Apply Now
RSS Feed Print
On observation perhaps....any thoughts?
dj okay
Posted: Sunday, September 1, 2013 11:04 AM
Joined: 11/29/2011
Posts: 1840

I have been struggling with my observations of how caregivers react to the loss of their loved ones over the past year.  I say struggle in the sense that I observe the differences in how others respond after the death of their loved ones and how I have responded.  My objective side tells me that we are all unique individuals and as such, have unique responses to a loss.  However, my subjective side tends to want to put my response into a category.  So for the sake of opening a dialogue, I'm going to attempt to describe the categories I have noticed.


First are those caregivers who seem to feel deeply the loss of their loved ones.  They struggle with grief for a season, in a number of different and unique ways, but they grieve deeply, nonetheless.


Second are those caregivers who seem to have grieved almost completely during the process of their loved one's decline.  So following the loss, they seem to move almost effortlessly into a new phase of their life.


I hope I am not offending anyone with my observations.  I certainly understand that there are countless variations on these two themes, so all of us fall into some position on the sprectrum between the two categories I've observed.  To add to the variations, I would be remiss to omit mentioning several of the factors that seem to place us somewhere on that spectrum between the two extremes.


First, there is the attachment we had for the lost loved one.  Obviously, losing a spouse affects every aspect of our lives and is also usually the tie that binds us the most closely with the loss.  But there are so many levels of attachment to say, our mothers, as in my case.  There are relationships that are so deep that the mourner cannot but be affected by the loss.  And possibly there are difficulties in relationships that may make it easier to move on.


Then, of course, there is the level of involvement of the caregiver in the care of the loved one.  I'm not saying here that those that keep their loved one at home are necessarily more involved than those of us that needed to place our loved ones for any number of reasons.  I found myself, for example, so totally lost after my mother's passing because her care had seemed to encompass nearly every aspect of my life.  So this factor is more a mental thing than a physical thing, in my opinion.


And certainly there is the factor of the other responsibilities that the caregiver still has in their life.  There may be other family responsibilities, work, charity, and even hobbies that can occupy the mourner and aid in many ways to their healing process. 


Age may play a role in the level of grief as well.  I can see where a younger person may certainly have "more to live for" than say, an 80-year-old widow after 60 years of marriage.  Again, I'm not making any judgements here, just observing some patterns.


I think I'm sort of answering my own questions here, but I'd just like to make a few more comments....


When a caregiver is able to almost immediately walk away from a loss without seeming to grieve, is that a reflection of the fact that their loved one was mourned completely during the last stages of dementia?  I am sure this is the case sometimes.  I can see in my case that my mother hadn't gone so far into stage 7 that her personality was gone.  I could still see that light in her eyes, on good days.  So I was left to mourn all that was still left of her spirit.


When a caregiver struggles to "get through" their grief, is it simply a reflection of the magnitude of the factors I mentioned, or it is symtomatic of a failure to complete their grief work and "move on"?


I have been left in wonder, at times, at the people that have been such an active part of the forums that seem to be able to just "walk away" when their loved one passes.  This observation has led me down this path of thought.  Maybe it's a product of the anonymity of this online community and the inability to follow the lives of people that leave our ranks.  Maybe it's just me to become so involved in the issues of these so-called strangers that are thrown into my path that I'm left with all these troubling thoughts.


I hope you don't find this discussion trivial.  I cetainly don't mean it to be.  This is something I've been thinking about for some time.


Do any of you have any light to shed on my observations?



Posted: Sunday, September 1, 2013 8:23 PM
Joined: 12/23/2011
Posts: 114

Hello DJ,

The call came at 2:50am, June 21, 2013, Bill had gone to another life. Although I had been expecting it, it was still like being hit by a sledgehammer.


I'm 79 Bill was 83 and we had been married 61 years in June. So how do I grieve? I'm one of your examples.


If it's okay with you, let me back up. In May 2011 all was well with our world, planning trips, going to granddaughters softball games, having fun. Then in June Bill began to "act strange". Doctor thought I had a problem! July 28th, 2011, it was lunch time, Bill came to tell me his work was done and he was going home now. And he left.  He was hospitalized and the diagnoses as dementia was given.


He could no longer speak any thing understandable.


I went to classes given by our health plan, alzheimers association, deloro organization. and learned there was no cure. Also learned about all the legal things that needed to be set in place.


The first week after June 21, 2013 I set into motion what needed to be closed out so I was really working hard. My daughters were helping by driving me everywhere. All the legal "stuff" is getting completed, If you are getting prepared look into everything, I received a surprise last week, something I didn't know about and I don't believe Bill remembered about either.


As for Grieving I'm having a difficult time, He had lost the ability to swallow. The 9 days were terrible to watch.  Maybe if I had taken him to a different doctor, Maybe.  The death certificate says Failure to Thrive, Dementia-unknown type.


I look at our picture and cry, I hear a song and I cry. Even the desk my computer sits on Bill put together.


I'm going to a guided bereavement group next week. Actually 2 groups and then will decided which one I'll follow.


Sorry for rambling!








Posted: Monday, September 2, 2013 5:19 AM
Joined: 8/28/2012
Posts: 318

Yesterday was one month since my mother died.  For the most part, I've just felt numb, as if I'm in a bubble watching myself go through the motions of life. 


I think I've been grieving the loss of the mother I knew for years.  I think, in terms of it being easier to get over the loss of someone with whom you had a difficult relationship, that's not neccessarily true.  I've also been grieving (for years) the loss of the mother I never had, and now there's no possibility of having that kind of unconditional love & support that I'd always hoped for but never got.


I think that when Mom died, my first reaction was relief more than sadness.  The last month of her life was so hard on both her and me that I was glad she was out of her suffering.  She stopped eating 52 days before she died, and refused everything but water.  She didnt know where she was, she didn't know who I was, she was agitated and raving most of her waking hours, she was so weak she couldn't sit up without someone holding her upright but she kept trying to get up, she was hallucinating, and through it all she didn't become incontinent until the last 10 days or so, so I was lifting her from her bed to the bedside commode numerous times a day.  Hospice suggested a number of different meds - Ativan, Seroquel, Haldol - and none of them calmed her down.  The only thing that worked was to knock her completely out with morphine. and I didn't do that very often because I kept thinking that she might have some lucid moments and I didn't want to miss them if they came.


I've had to start going through her things, in order to come up with an inventory as part of the process of settling her estate, and I've found that some of the things she was raving about were real.  She had gone on for days about getting married and was upset because she didn't know where her wedding shoes were. I'd seen her wedding dress & the coat she wore over it, but never any shoes.  I found the shoes in a box of random stuff in her attic, wrapped up in tissue paper, and sat on the attic floor in tears.  Another time she was going on and on about chinese jewelry.  She had a lot of jewelry, but I'd never seen anything I'd consider to be chinese.  But in a box in her dresser I found a beautiful jade necklace. 


I agree that when your entire life becomes the care of your loved one, it is hard to pick up the pieces - you sort of forget who you used to be.  Every time my husband and I are going to go somewhere together now - even just to walk up to the post office - it runs through my mind that we don't have someone to stay with Mom, and then I realize those days are over.  I have no idea what the next phase of my life will be like - right now we're in a kind of limbo, trying to get everything in order to settle the estate, thinking about what to do with her house, trying to tie up all the loose ends of her life.  I'm really dreading the 2 month anniversary of her death - it will be the day after what would have been her 91st birthday, and the day of my birthday. 


dj okay
Posted: Monday, September 2, 2013 8:48 AM
Joined: 11/29/2011
Posts: 1840

I'm glad I opened this conversation, if but to offer a chance for some to share their experiences.


Dear Millie,


After 61 years, I think you are doing as well as can be expected after only a couple months.  I was still hurting badly, looking back on it now, after that length of time.  My husband and I have been married 43 years and were about the age of you & Bill when we married, so I can only imagine the depth of your grief!  Plus, his decline was so much swifter than my mother's.  She had symptoms for years before diagnosis, at least 5 years as I remember.  She lived a fairly "normal" life for 2 1/2 years after diagnosis, then 6 months in assisted-living, and 3 1/2 years in a nursing home, before finally passing away after a brief illness (one week).


You have a lot of grief work to do and will probably grieve your loss, to some extent, for the rest of your days.  And, in my opinion, that should be normal for someone who was so devoted to her husband for 61 years!


I hope you find the support you need in that process in one of those groups you are going to try.  You are very wise to seek that out.  I believe it will help you immensely.  A friend of ours lost his dear wife last year to cancer (she was only 40 years old and they had never had children).  He has benefitted a lot by the support group he attends.


And, as always, feel free to share with us on this forum.  It has helped me in many ways over the past year since I lost my mother.


Dear SueK,


The feelings you describe are so consistent with what I was feeling after just a month that I could have almost written them myself.  Give yourself some time and it will get a little easier.


I understand your fear of next month's anniversary.  I had a similar situation at 3 months.  The 3-month anniversary of my mother's passing was on a Friday.  I had quite a difficult day that day.  The following Monday was her birthday.  And on Wednesday the same week, I picked up the ring I had made from her wedding set.  It was a tough week, but once it was over, I felt my healing began in earnest. 


On the relationship issue, I understand what you're saying.  I used the word "possibly" when I said that, because it wasn't true for me at all.  But I was thinking of a few members here that had very bad relationships with their mothers or fathers and seemed to deal with their demise and deaths quite differently than I had.


My mother was damaged emotionally by many cruel and thoughtless people due to a birth defect she had.  She never had professional counseling for this and my father protected her and doted on her the entire 55 years of their marriage.  My brother and I were left to deal with her broken-ness after my father's death and we were of no mind the same disposition as my father was to deal with it.

I had always grieved the absence of the kind of mother-daughter relationship that many of my friends had where they described their mothers as their best friend.  I only wanted to have something approaching that, and I never did.  That is, until my mother developed dementia.  She was still not able to give me what I needed (or thought I needed) in the way of friendship.  But we were able to put aside the differences that had troubled our relationship, she because she forgot, and me because I knew she was never going to be able to do anything else.  We were able to enjoy a tender, loving, and accepting relationship that we had rarely ever glimpsed.


Do take care of yourself during this busy and grief-filled season.  And let me know how you're doing.  I do care.

Johanna C.
Posted: Monday, September 2, 2013 10:03 AM
Joined: 12/9/2011
Posts: 12741

There are as many ways to feel the loss of a loved one through death as there are people on the planet.


Sometimes we "think" we see how another person is grieving and working through their loss and we "think" we "know" what is going on, which is really a personal judgment based upon our own personal biases, understanding, beliefs and experience; not the other person's.  In reality we are most often, "seeing thru a glass darkly."  We are blind and not privy to absolutes because we don't truly know the absolutes as we are not inside that person's head and heart, so it is best to always try to not assume or categorize a person to a box.


Death; dying and grieving, were subjects we received much, much education about all through nursing school and in ongoing continuing education.  The one golden mean was, never to judge or put one's own spin on what we think we see, but rather to be open.  We learned that loss and grief does not go from Point A to Point B in a straight and simple line on a predictable timeline; the path is most often convoluted and goes back and forth many times.  We need to let ourselves travel those convolutions as we work through our loss without over-intellectualizing ourselves and without prescribing an expected timeline for ourselves.


Each person has their own personal, but very different story, their own experience and as said, the stories and experience will be hugely variable.  Sometimes, it is true that we don't even understand ourselves in our own grief and can actually miss our own issues until far later if at all.  It is not so much a dynamic of "thinking," it is more a dynamic of, "feeling" and personal uniqueness.


Personally, I have lost my beloved parents not that long ago; also not that long ago, a beloved brother in early adulthood; my beloved sister in childhood; my beloved grandmother; and more.  But I have not lost a child nor a spouse.  Some of my beloved LOs were lost due to short illness; some to a lengthy one.  My grief was deep and my heart continues to have soft, sweet and poignant spots for each beloved and there can still be fleeting moments of sadness.  However; I have not had to sustain the overwhelming loss of a beloved child or my beloved husband and I think that would be a grieving of a much different nature and frankly, I am not sure how I would fare.


Following a death, some folks are very private and will share only a little information or let a bit of their feelings to be seen, others are guarded or do not want to show or divulge at all, others let all be seen and shared.  And the feelings and dynamics can shift as time moves forward - this shift can be one of lessening of intensity in the grief, or it can be one of deepening intensity; again, person specific and not being that person, we don't truly have the knowing.


I also think that type of grief and perhaps even how the grieving proceeds is also dependent upon who the person was, who has been lost and even how the death has come about as well as there being past experiences, cultural implications, religious belief for the one left behind, and on and on.


The grief at the loss of one's beloved infant, toddler, child, husband, sibling, mother, father, grandparent, etc. can bring unique dynamics to that situation that can be profoundly different.  Age at time of loss, past life experiences, religious beliefs, status of relationship dynamics; was the death thru lengthy illness, or abrupt condition, thru trauma, criminal activity, etc.  There are people who have lost someone who was abusive to them and who hurt them; their feelings and processing can be very complex.  So many dynamics and so many people - as said, each one their specific own, different from any other.


Some may seem as though they "walk away," and are fine - but are they always really?  No.  Some folks keep to themselves and perform as just "fine," but in their heart they are suffering their loss in personal privacy.  It is best never to assume.


Others may seem just fine, but they are in state of suspended grieving and it comes later; whether a few weeks, a few months and even a  year or more later and may come out in a variety of ways.


What becomes a concern is the inability to eventually begin a degree of resolution and lengthy inability to move forward; to begin to sink deeper and deeper and deeper into depression or in other ways that is harmful to the person.  There are some that get "stuck" and the death is a catalyst that brings to the surface unresolved personal or mental health issues that were lurking just below the surface.  In some, after time, it can even seem there is a fixation or obsessive component.


In such a situation, a mental health professional would be most helpful in restoring balance and acceptance to finally bring solace and peace by helping the person through the darkness and treating the issues of need.


Support groups for grief, especially when led by an educated, competent facilitator, can be very helpful for many; for others, this would not suit them.


The saddest and most hurtful part of grief is that there is no way to suddenly make it go away, the pain surpasses all and eases in it's own way in it's own time; this was the most difficult part for me.  Soft hearts of understanding friends and loved ones can be wonderful anchors during such times, but still; when it is personal . . . . . . . .


This has been a topic throughout the ages and since the dawn of cognizant human time and probably will continue to be so to the end of time . . . . . and not much will probably ever be different.


Of course, all of this is just one person's understanding and opinion out of many. 


Johanna C.




dj okay
Posted: Monday, September 2, 2013 10:37 AM
Joined: 11/29/2011
Posts: 1840

Pardon me if I came off as "over-intellectualizing" the subject.  It was certainly not my intent.  I was basing my observations almost solely on the behavior of members of this community who have lost loved ones this past year or so, during the same period of grief I've been experiencing myself.


And if you re-read my post, my "categories" were merely a starting point in my observations.  I went on to say that, in reality, we ALL fall somewhere on the spectrum (or continuum, if you will) between two extremes.  That is to say, we are all unique and display, at any point in time, similarities (to the outside world) of the two categories.


So, I think we are saying the same things, Johanna, if just a little differently.


Perhaps some of my reflections were brought out by Jezza's comment that, after 3 months, he was able to observe that he hadn't once missed his grandmother, after having been so involved in her care, and what a beautiful reflection that was.  Maybe, as you said, his grief will turn up unexpectedly in time and surprise him with its intensity.  Maybe he is just more philosophical than most and really can move on to this next stage of his life with joy and anticipation.  Maybe his age and the number of joy-giving aspects of his life can somehow overcome any shadows of grief he may feel.  I don't know.  I'm just a casual observer.


But I've been thinking about this since the time I lost my mother.  You may remember how involved Marjk was here for a long time.  And just a few weeks after she lost her mother, she resigned as a Peer Volunteer, and shortly afterward seemed to stop coming to this forum.  I was always amazed at the difference in the way the two of us reacted to our loss and the role we play(ed) here in the forums.  So many times I've wondered at the differences, so Jezza's comments brought it all back to mind.


I sure hope I haven't offended anyone by my observations.  I totally understand the uniqueness of our individual grief and respect that more I can say.  I guess it's just my logical nature that tends to analyze things.  It is certainly one of my weaknesses, if not a failing.


But if my reflections have given an opportunity for others to share their journeys of grief following their caregiving experience, then it was worth it.


And thank you, Johanna, for mentioning so many of the "factors" I neglected in my first post.  You are so right, there are a multitude of reasons we are unique.  And if we weren't, how dull would that be?

Johanna C.
Posted: Monday, September 2, 2013 1:12 PM
Joined: 12/9/2011
Posts: 12741

Oh heavens, no; I did not think of you "over-intellectualizing," the topic just brought a whole lot of memories and background dynamics up for me and I was thinking out loud - I tend to do that when I write.


If you misunderstood my intent, I do apologize.  This particular topic has been  very important one to me that I do not often discuss as it is personal.  During part of my professional background, in earlier years, I worked with Oncology patients and death and grief were something very important as the RN not only with my patients, but also with their families.     


As said, though I have had personal losses that have been very painful.  I have not experienced the loss of my child as my parents did, nor have I suffered the loss of my dear husband and I hold gratefulness for that close in my heart.


Losses such as those do not diminish the other losses, however; for me, it would be far different to lose a child or my husband than it would anyone else.  I am not so certain I would fare very well and I would undoubtedly be needing to seek outside assistance as I do not think I am that strong in that regard.    


Some of the Members here do step away actually quite quickly following the death of their Loved One.  The Message Board has served its purpose for them and that aspect of their need has now fallen away.  We have had a few folks who were avid users of this Board and who were much connected to other Members who simply left. 


In speaking with a couple of such folks, I was told they needed to step away from the dementia dynamics and move forward grieving their loved one and to more or less learn to walk forward again.  While they grieved their loss, they did not stay to dwell on dementia.  Once in awhile, one will pop in either on the Board or in a private email and say "Hello," and then waft  away again.  I always miss folks but understand.


My heart goes out to the losses the members experience and I see such grace and love from caregivers, that it humbles me.   Those that have lost their beloved spouses after such a lengthy illness and years of caregiving of their life's love, make a special impression upon me.


Would that we could find a cure and change all of this!



Johanna C.

King Boo
Posted: Monday, September 2, 2013 3:23 PM
Joined: 1/9/2012
Posts: 3625

Hello DJOkay-


Many interesting things to ponder.  I too, wonder what happens to some former posters.


I am thinking that for some, leaving the boards is necessary for them to heal.  Perhaps reading the boards and responding brings back memories of their own journey that are too painful to re-live (at least right after the death of their loved ones).  They may come back at a later date.  Marjk left, but did pop back a few times to say howdy to those who touched her during her journey.  I was glad to see that.


Others may find continuing on the boards part of their healing, paying it forward so to speak, help others better walk the pathway they themselves had such a hard time with.


I wonder myself, what my reaction will be when my remaining declining parent passes.  It took me a full 5 years, amidst raising a young family, to reach any kind of peace with my mother's death.  Her nickname, incidentally, was "DJ", so whenever I see your sign on name, I smile, because my DJ is indeed OK now. In another odd ALZ connected coincidence, her DOD is the same as our own Johanna C's parent, July 6.


For my still living Dad, I anticipate relief, I am quite tired of the journey, I must confess.  Yet I am scared that I may not miss him, scared that I could write off my past so easily, as well as my Dad, for all that he is, and all that he is not.


I'll have little control over that, though, so I must let it go and go about what needs doing now.  I will be re-assured, though, that healing and peace will com eventually.  Even though it took 5 years for Mom, it did come (see my post Dec. 2012).


Regards to you, thank you for your work as a Peer counselor.  Wishing you peace and healing.


Johanna C.
Posted: Tuesday, September 3, 2013 9:03 AM
Joined: 12/9/2011
Posts: 12741

Dearest King Boo - You are one of the folks who never fails to impress me and I often feel that sense of humbleness in regard to your amazing capacity of caring and advocacy for your parents all the while raising young children.  You are an extremely insightful and intelligent person and I have learned much from your marvelous wisdom.


When I see you have written, I always read what you have to say as quite often, there are nuggets of gold in your words.  Your light shines very brightly and I thank you for what you bring to all of us.


I do understand the emotional fatigue that is being experienced with the caregiving in regard to having  a second parent with dementia.  I too had a similar situation.  I think I finally had a flash of understanding in finally, "getting it," in not trying to analyze what I was in the midst of, but rather to simply let myself feel what I was feeling and to let myself move through my personal process which took some time with the back and forth of feelings after Mom died.  It is to be expected.


It is true that some folks while experiencing their loss of a death simply need to move away from the dementia centered dynamics and so they leave us.  Some still connect.  I was helped so much by the folks on the Message Board while in the worst of times with my mother, I wanted to give back in whatever way I could which has led me to where I am now with the Peer Volunteer Program.


My mother had years and years with FrontoTemporal Dementia as she slowly evolved from pre-diagnosis changes to the many years in full blown FTD.  She was over the moon with unbelievable behavioral issues as well as with physical conditions that were all consuming.  Then in the midst of that came the AD diagnosis for my step-dad.


I felt like a butterfly with hiccups and often simultaneously juggled and tap-danced while whistling, "The Flight of the Bumblebee," trying to be all and do all.  The largest component was the sub rosa emotional toll it took which eroded my inner resources bit by bit by bit.


Though I was prepared for my mother's death as she slowly began to fail and lose more and more and more, I was surprised at how deeply her death affected me when it did come.  I was blessed to be with her as she left, and I found myself inexplicably at the most basic level stunned to be losing, "Mommy."  That word popped into my mind when she passed and I had not called her that since I was a small child, but the word ran through my mind and heart all the same.    


After Mom died, and despite my grief, there was still step-dad continuing on with all of the dementia and physical condition and care needs.  No time to ponder myself very much.  And I was tired.  As I often can be heard saying; "It is not a sprint - it is a rigorous mega-marathon where someone keeps moving the finish line."


I felt a bit of blunting of my feelings but strove to continue to do the best I could under the circumstances; yet it wasn't at the same pitch emotionally as it had been with my mother.  Then at 96, step-dad had a sudden onset of a physical ailment no one saw coming and he did not survive it.  Mixed feelings of loss along with a sort of odd relief and a feeling of sadness and more than a bit of flatness. 


The death was without struggle or strife which was a blessing and I was relieved that he was able to be at home until the end per his wishes.  I felt such a deep sense of loss; both were now gone.  I felt the loss with step-dad's passing, yet it did not encompass me as deeply as was when my mother died. 


I miss them so and the way things used to be.  Nothing will ever be the same of course, and now I am one of the "older" generation following my parents . . . . life moves forward and we are moving with it; right behind us follows our children - as the song title says; "The Circle of Life."


It was important for me to remember that how I conducted myself in the face of such a large loss was being transmitted to the children and that they would internally, without even realizing it, internalize this and their own reactions to death could be colored by how I was reacting.  I did have my tears and grieved with my sadness showing, but I also had to remember the children and be comforting for them.


I so wish that such losses could be easier, but as human beings, that is not an option for us in most instances of a loss of a loved one. 


Eternity faces us all.

Posted: Tuesday, September 3, 2013 4:24 PM
Joined: 11/30/2011
Posts: 2105

This is painful for me to write.  I would say I am struggling quite a bit with the loss of my father.  I've thought about the reasons why over the months since his death.  My mother passed away 13 years ago.  I did grieve for her, I had my regrets. I think what helped is I felt she received the care she needed.  My father was her primary caregiver and so he made most of the decisions for her with input and support from my sibling and I.  I didn't have to take the lead on that.  That may be one reason why I didn't struggle as much with my grief.  Don't get me wrong, I did grieve my mother's passing, but it's not quite what I'm experiencing now in my grief for my father.  We had  difficult family dynamics, wasn't the happiest of households.  Although my parents did the best they could, it was tough growing up in our family situation.  Even still, I loved my parents, and I know they loved me, but it wasn't a close and loving atmosphere growing up.


When my mom passed away, I vowed to help my dad even before he developed dementia.  I learned from our experience with my mother's Alzheimer's and when my dad developed dementia, I appointed myself as his savior.  I took care of my dad for 13 years, 8 of those years with dementia.  My sibling made it clear that sibling's participation would be limited.  I did burn out, between his care, working full-time, having my own family and our own problems.  I did resent my sibling during this time and the lack of support, both hands-on and emotional.  I felt I was abandoned.


When I started this journey with my father, my priority was his comfort, his health, his safety.   I did all that I could to make sure he ate well,  had everything he needed.  In the end, he suffered.  I felt the care facility was lacking, I felt the the palliative care nurse was lacking and I was lacking in steam and energy, his other family didn't visit him much.  He died two days after we had him signed on for hospice.  I questioned the medications they wanted to give him.  I thought they were not good for him, I didn't understand that in this situation, Haldol could have brought him comfort.  He was in terminal restlessness.  I was with my father every step of the way, and when he died I wasn't with him.  I had just gone home to grab a bite to eat, I was gone for one half hour and I wasn't with him when he took his last breath.  My sibling was with him when he passed and maybe that's the way it should have been.  Sibling didn't visit him much and he always would ask for sibling, wondering why sibling didn't visit him.  The two months before his death, I took him to three different doctors trying to find the source of his pain, his discomfort, they couldn't nail it down.  He wanted to go home.  I tried to get him out of the care facility into another place where he could receive better care, but hospice told me it was too late for that, they advised against moving him, he was dying.


This is why I am questioning myself, regretting my decisions for him, grieving those choices I made for him.  I feel I failed him and I am so sorry.  It's been almost 16 months since his death.  I can say the frequency of these feelings are lessening a bit, but it's always there right below the surface.  I suspect I will always feel this regret the rest of my life until the time I can forgive myself for being human.  Seeing and hearing him those last two months, those last two days never quite leaves me.  I wake up in the middle of the night thinking about it.   I've gone to a grief counselor and it didn't erase these thoughts, it helped for awhile but the thoughts and feelings are still here.  I think for me, it's going to take a very long time for me to feel I can have some redemption.


Mostly now, I keep these thoughts to myself.  Everyone around me expects that I should move on.  They lose patience with me expressing my feelings of failure, they tell me not to feel this way, but I do.  So now, I don't talk about it.  The only release has to come from me and it's going to be a very slow process. 


I do find myself envious of those people who say they have found peace with the loss, they grieve, yes, but to feel a sense of peace would be wonderful. 


I still keep coming back to the forum and I sometimes wonder if maybe it keeps all the memories and the suffering alive for me.  But then I remember how lost I felt much of the time, and the support and comfort I received when my father was still living, the invaluable suggestions for his care.  I remember how I felt so alone and afraid in making decisions for him.  If I have something small to offer someone else, I feel I should do that.  


Getting back to life, I can say I'm still floundering about.  I do go to work everyday, I'm trying to catch up on things at home, still have to sort through my parents' home, still feel strange about having more time that is flexible.  It's a strange adjustment, that just feels right and wrong all at the same time.



dj okay
Posted: Tuesday, September 3, 2013 4:43 PM
Joined: 11/29/2011
Posts: 1840

Dear KML,


While I have followed your grief during the last 12 months, at least, this is the best description of your suffering that I have read.  Thank you for sharing so much and being so honest about your pain and regrets.


To those that say "don't feel like that" I say, feelings are just that.  We feel what we feel, whatever it is.  We cannot just shut them off.  And no one should make someone else feel bad in any way for the way they feel.  For them, it just is the way they feel.


I know that you are an intelligent woman from your writings.  I sense your compassion in the way you have responded to me and helped me through my journey, as well as my grief.  From this knowledge, I feel that you will find your peace someday.  There is so much available to us in this day and age, whether it be intellectual, philosophical, spiritual, religious, or otherwise.  There is something out there that will help you find your way.


Just promise me that you will continue to search and work toward peace.  There is no need for you to settle for the way you feel right now when you know that peace is attainable.


I like Johanna's quote:  "There is no perfection, only the best that we can do."  You have said yourself you did the best you could.  The fact that it wasn't enough should be no reflection on your attempt.  You did the best you could and you did it with love.  I doubt that any of us could expect more.


May you find your peace.  You deserve it.

King Boo
Posted: Wednesday, September 4, 2013 9:38 AM
Joined: 1/9/2012
Posts: 3625


Just Wow.

Johanna, your kind sharing of your feelings as you traveled with Mom and Step Dad left me breathless.  I imagine what I am experiencing is a similar pathway, and hearing how such a caring fellow traveler such as you felt is extraordinarily helpful.

I tend to feel that I was being a bit diffident and existential towards Dad, but, yes, it is fatigue.  Very helpful to recognize that, instead of thinking I've lost my capacity to care.


At this point, as well, hovering on the edge of eventually saying goodbye to Dad, is the facing of our own eternity.(your very accurate words).    In some ways, starting to integrate this into our daily may be one of the few gifts of dementia.  There's a lot of other losses that go with the loss of our parent, and perhaps slowly dealing with them along the way is preferable to a sudden smack, when retreating into the cloak of denial stunts the healing process.


KML, much of what you write echoes the beginning of a long path to healing.  Our emotions often follow a different path than our intellect, so as you say "forgiving yourself for being human" is a very long process.  I know it helps not for us to point out your tireless advocacy for Dad as amazing, but it was.  Finding our healing our own way takes years.  I would easily say that I was PTSD for several months after my mother's death, with sudden jolts of alarm and sitting bolt upright in the middle of the night with nightmares. With time and coping, it faded enough to begin finding ways to cope with the daily, and then later to heal.    Bit by bit.

Johanna C.
Posted: Wednesday, September 4, 2013 10:58 AM
Joined: 12/9/2011
Posts: 12741

Ah, dear KML; I see a bit of myself in your description of yourself.


That endless searching for more to help; something you may have missed; providers lacking in their interventions; researching because you just know there must be something else; and on and on and on . . . . . striving so hard to help and protect - this was also my experience.


I had always been a person who could quietly solve and resolve anything, never did I meet a challenge I could not find an answer for.  As an RN who was Administrator of Patient Case Management and all that entailed, I rose to many significant challenges on behalf of many of the patients and their families.  In fact, the nurses had a lovely decorative needlepoint sign framed for my office that said, "Dragons Slain Upon Request."  (Someone eventually took it, darn it - I loved that thing.)


Then, one day, without warning, along came the quite unexpected specter of the diagnosis of FrontoTemporal Dementia in my mother.  Shocking; and I was so unprepared for what that meant, but by gosh I was going to protect her and care for her and do my very best on her behalf.  I wanted her to have the best quality of life that could be and I set forth to do that for her and I would not let her down.  I left no detail unattended.


As time passed, the challenges ramped up and became legion on multiple fronts and solutions were not always to be found.  I researched, I read, Mom had specialists . . . . yet, so much was still in horrible stead and her changes evolved and evolved and even physical issues of decline arose.


Oh, how I tried.  How I strove.  How I researched.  How I lay awake at night, pondering, wondering . . . was there something just around the corner that I had somehow not found that would help?  What was I missing?


Well; finally, after quite some time, in talking to a very wise friend who is also an RN, she finally got through to me.  "I realize your mother has FTD and that you know that the disease is progressing and will ultimately lead to her death.  I realize you are seeking for something to help; but let me ask you this . . . . . if your mother had cancer and it was terminal and the doctors told you she was in the last stage, would you still be looking and looking and looking for more and throwing yourself against one brick wall after another as you are doing?"  Well; in all honesty, they answer was, "No, I would not be doing that."


That put things in perspective for me and over the next week or so, I was able to process that knowledge and discover that for me as for anyone else, there is no perfection; only the best we can do under the circumstances with the challenges at hand.  I had been searching for answers when there were none.  The course of disease was doing what it always does; it outwits us all.


I felt responsible.  I truly did want to help.  I was trying to control that which defied any control whatsoever.  And the providers, some were woefully inept, others tried but were short, some were excellent; they were all just like me - human.  I had to be ever vigilant.  That is emotionally exhausting and it does take its toll on our inner resources and that is not easily resolved nor restored - it take time and has its own timeline.


After the death, in hindsight I knew there were some things I wish I had done differently, but that was indeed hindsight which of course was 20/20.  Initially, there were some nights I lay awake thinking about this.  I had been the protector and could not forestall the eventual outcome and the things that happened, no one could have.  The shortcomings of some providers actually meant nothing in the course of disease and outcome.


I understand where you are presently at and it is certainly inappropriate for anyone to actually tell you to, "get over it."  Feelings are just that - feelings.  Logic and emotion do not live on the same plane of existence; they are separate from one another and they do not recognize each other.  The brain tells us one thing, our heart another.


Though you logically know you did the very best that could be and that there would not have been a different outcome no matter what and that not all providers are perfect, things would still have evolved in the same manner; your heart though, continues to call to you. 


Little by little, with tincture of time, we regain our perspective and we find ease of spirit.  If we cannot regain that perspective and it remains so skewed that we are suffering and going into a depression that does not lessen, if we cannot sleep and if the tapes keep replaying incessantly in our minds, then of course we need to have someone help us regain our footing.  Sometimes it takes a bit until just the right counselor is found, but it is worth that effort.


If you find yourself slowing evolving and coming to acceptance, you are doing fine and are just where you need to be in the moment.  Anything else in that you are losing ground, you are intelligent and able to see that you may need a helping hand to be your guide.


You did do the very best; nothing could have ever changed the evolution of symptoms, happenings and outcome.  No one could have done better or been as vigilant.  You have been an amazing care provider and a blessing beyond measure.


I am heartened that you felt safe enough and have recouped sufficiently to be able to share your experience and feelings; that is a very large step in recovery.


Oh to find the magic elixir that could remove the pain in our hearts and some of the second guessing and even guilt in our minds; but you know what I figured out?  That pain we feel tells us that we have loved and have been loved.  Being human carries with it the capacity for love as well as the capacity for feeling the pain of loss.  I would not have missed the love for anything.


With a soft hug and understanding from one daughter to another,


Johanna C.



Posted: Wednesday, September 4, 2013 11:46 AM
Joined: 11/30/2011
Posts: 2105

I really do appreciate all of you, your hearts are encompassing. 


We're all struggling with the same issues, and we help each other.  Thanks for being here, my friends.

one daughter
Posted: Friday, September 6, 2013 10:29 AM
Joined: 1/30/2013
Posts: 1980


That last paragraph really got to me.  I've never heard it put that way before.  I copied & pasted it onto a document. I'm going to print it out w/a nice font, go get a nice picture frame, & hang it in my home.  So that whenever I start feeling upset or missing my daddy or my mama w/alz, I can read it again.  Thank you.

Johanna C.
Posted: Friday, September 6, 2013 6:08 PM
Joined: 12/9/2011
Posts: 12741

Oh, one daughter, that touches my heart and I am glad it said something to your heart.   Love is never lost, ever.  It is what makes us who we are.


If we are blessed that we have received love in our lifetime, we learn from that so it is also something that we give to others.  After we are gone, the love we gave to those others continues to go on and continues to make a difference in the lives of those who received love from us, which in turn, because they were loved, now make those persons capable of giving love to different others which makes a difference in those next lives and on and on and on.


When all is said and done and we set aside this world and all the material things, all that really mattered and all that really lasts is the love; both given and received.  Priceless and timeless. 


You are loved and have been loved - what a blessing!


Johanna C.

Posted: Saturday, September 7, 2013 3:44 AM
Joined: 8/12/2013
Posts: 158

Love first entered my life for the first time when I was about 21 yars old. For me love is just not just a word but an all consuming feeling that has enabled me to perform what many consider the impossible.


I've never been gifted with the love of a parent, or other adult as a child. To hear the words Mom or Dad were strange to my ears. There were a number of kids like myself who were nobodies children in the first detention center I was located from age 2 to ten. Other kids when they were given a hiding use to cry: "Mammy, Daddy" and we, the 'Nobodies' use to howl with laughter, we just did not understand.

In all I served 14 years up to the age of sixteen locked away in an all male environment. On my release there was no one to turn to and that was fine. I was free in a very strange and exciting world. Emotionally barren, uneducated and stunted growth due to being under nourished, I had a lot to learn about every day living that people take for granted..

When love walked into my life in the form of an eighteen year old girl I was transformed. Her quite, gentle shy ways proved to be my salvation and inspiration to achieve the impossible dream; a loving family, home and to retire by age 54. Our life was not without heart ache and pain with the loss of one of our children.

When Alzheimer's was visited on my wife, there was no one going to be allowed come between her and I when it came to caring for her in her final years. It was a privilege and honour to provide the best care I was capable of when all the experts said she would not survive overnight four and a half years too early.

I now bask in the beauty and wonder she has bestowed on me with fond memories and to witness so many happy grand children and great grand children.

Best of all I can truly say 'I did things my way' I knew no different.

dj okay
Posted: Saturday, September 7, 2013 8:19 AM
Joined: 11/29/2011
Posts: 1840



You continue to be a role model of love and devotion.  That you would come here to share your journey of love with us is a testament to the power of love in a life once barren of that gift.  I am so glad that you were able to know love and to grow in love in such a way that you are able to continue that legacy of love with your children and grandchildren.


Thanks for sharing!

Posted: Saturday, September 7, 2013 9:31 AM
Joined: 8/12/2013
Posts: 158

I was one of the lucky survivors of the Irish Industrial School system. For most of my life I've been running from that past and lived in denial, ashamed of the stigma attached to have been in State custody. There are many who are bitter and are constantly complaining about their treatment in what they refer to as 'child labor camps'.

It was during my Caregiving days that I was jolted back to reality when there was s public apology issued on behalf of the Irish Government for all the wrong done to vulnerable children. So many of those kids never made it in life and sadly took their lives. By contrast I've had a wonderful exciting life without the constrains of a conventional childhood and education. They put me to work at age ten.

Whenever I reflect on my life I can but smile and ask myself; "What would people who worked for me, have thought if they knew the background I came from?"


 In the past few years I've research the whole background that led to my incarceration and the official records reveal an amazing story. It reveals that I was not guilty of any offence and that the records show many untruths told by my birth mother. Sadly it appears that she had many problems of her own to deal with. The research also reveals that I have many living relatives that I never met or lightly to.

The main point is that I'm at peace with the past and hope the story I've just completed  about our Alzheimer's years will prove of some help to others. Like every thing else in my life I handled the Caregiving in an unconventional manner: 'my way'. Just got to find a publisher and complete the back cover.

Little Wing
Posted: Saturday, September 7, 2013 5:02 PM
Joined: 5/15/2013
Posts: 146

It's interesting on the timing for this discussion, I spent this same day (last Sunday) what I call "brain dumping" a four page missive into an email, then sent it out to a few of my closest friends.  It wasn't to elicit a response, it was absolutely to just get it out of my head, thoughts that have been running around since my mom died this past June.  What's haunting me most, besides the obvious missing my mother, is the guilt.  It's not an overpowering guilt, it's more like have a fly in your house, and you'll see it flying around and you try to kill it and miss or even think you may have gotten it, then it goes away.  But tomorrow or the next day it's back buzzing around.


It's not constant this guilt, but it's the biggest issue I have with the death of my mother.  My mother went so fast, from beginning to end, from diagnosis to death was less than three years.  I know so many of you struggled for much longer, and that we and my mom were lucky it was so short.  It's not that I want it to have been a longer nightmare, but that's one of my guilts sometimes, almost like I didn't go through as much so I haven't the right to feel as badly as I do.  Or because I placed my mom that I don't deserve to cry as much. Oh, the ridiculous thoughts that run through our heads.


The main guilt I have, and it was these boards that prompted me to write my "novella" to my friends, was how grateful i was to have found you all but that I didn't find you soon enough.  This relates to how I treated my mother throughout her illness.  There were times when I thought she was overreacting, or trying to get attention, or manipulating us on purpose.  That's the guilt that eats me alive in my darkest hours.  A quote from what i had written:


"It took me until the very end of my mother's life to understand just a small chunk of what she was going through.  It took me until she died to realize that I hadn't truly believed she really had Alzheimer's (or some form of dementia)."

Some of that is denial because I couldn't fix it, couldn't control it, and being a control freak it must be something else, some other disease, so I can make her better.  I also find I miss my mom so much more than I thought I would or that I thought possible.  If I start to think about her I flit to another thought, because it feels like if I sit with a thought or maybe mentally try to talk to her, that I will break into a million pieces and never recover.  I know for a fact I haven't grieved.  I've cried some, had a few really good cries actually, but I'm nowhere near to dealing with this as is probably healthy.

So I'll keep writing emails to my friends, I'll keep coming on the board so I can offer up advice to those that are still going through this and I'll continue to pray that God will grant me the strength to deal with this whole journey and it's aftermath in a way that is healthy for me and respectful to my mom.  Thanks AS ALWAYS everyone for listening.  You guys are the best and you truly saved my sanity these last six months.

dj okay
Posted: Saturday, September 7, 2013 8:57 PM
Joined: 11/29/2011
Posts: 1840

Dear Little Wing,


I think sometimes it's easy for us to say "Don't feel that way."  But that's the way you feel, it just is what it you.  Feelings are so unique to the individual and the situation in which they find themselves, that it is very, very difficult for almost anyone to understand.


But I would like to comment on your statement that you feel guilt because you didn't find this forum sooner and therefore didn't really understand what your mother was going through.  You were in the midst of a most difficult situation, thrown into the deep end of the pool, if you will, and you had your hands full trying to deal with your mother.  You didn't know what you didn't know.  You were doing the best you could under the circumstances.  And you were doing so with love and nothing but good intentions.


Perhaps, as you said, there were times when you weren't as patient as you could have been (had you understood why your mother was behaving the way she was).  I think most of us have similar feelings.  I know I did.  There was more than one incident, before I found this forum and really started educating myself on dementia, that I yelled at my mother.  I felt horrible about it at the time and when I truly began to understand what she was going through, I felt even worse.  But now I tell myself that I was only reacting the way anyone who doesn't understand this disease would react.  I understand now that she was doing the best she could under the circumstances. But I didn't understand it then.  You were probably in the same boat.


I think we feel the most guilt for the things we haven't done.  Most of us would have tried harder had we been able to see into the future.  When my mother got sick at the end and I had to put her on hospice, I had spent the preceding 3 weeks at the hospital with my husband because his brother was in ICU, having gone through heart failure, had a valve replacement and was still in a coma.  I felt so bad when I knew my mother was dying and I hadn't been with her as much as I usually would have, but I told myself that I was only acting with the information I had at the time.  In your case, the end came much more quickly than you thought it would.  So you probably have more regrets about things you could have done, especially since you had so recently found this forum.  But no one can see the future, so we do what we do with what we know at the time.  I'm sure there was no neglect on your part.  So try to go easy on yourself.


But at the same time, I realize you are still very new to the process of grieving your mother.  It hasn't even been 3 months yet.  I was still quite fragile at 3 months, with many emotions and thoughts to work through.  Grief isn't something you can rush.  I found that out over and over through the past year.  It is emotional, mental, physical, spiritual, everything that makes us who we are.  So it takes time and it takes as much time as it needs.  If you work with it and allow yourself to heal, you will come to a place of peace.  I am getting closer every day.   You will, too.


As far as your mother going faster than others, I think you just had to cram in all the turmoil and emotional upheaval we all go through into a shorter span of time.  You may have had less time to become engrained in the caregiver's life, but you may have more PTSD (post traumatic stress disorder) symptoms.  Don't think because your journey was shorter that your grief should be, too.  I really don't think it works that way.


Anyway, thanks for sharing your thoughts and feelings.  I hope this discussion has helped you some.  It certainly has prompted some good responses.

Posted: Sunday, September 8, 2013 5:04 PM
Joined: 12/2/2011
Posts: 726

Wow, dj -- you started an amazing thread!  I haven't read all of it, but I will.  I no longer have the energy to post on the caregivers forum.  I am in awe of those of you who continue to help the newbies coming behind us.  Bless you for that.  I don't come here as often either.  I am trying to move away from my caregiving life so that I can figure out what to do next.


A year after losing my parents I thought I would be further along in my grief.  Will there always be this hole?  Will I always miss the life I had with them?  I take some responsibility for that. Taking care of my parents and my kids took all my time and energy. Now, they are all gone. I need to figure out what the next phase of my life should be. I need to find new purpose for my life. In middle age, it's not as easy as I had hoped.


Dear friends, and yes, I consider you friends -- I wish you all well.  Hugs...

Posted: Friday, September 13, 2013 10:36 AM
Joined: 11/30/2011
Posts: 2105

Little Wing:


You say you feel guilty for the way you treated your mom during her illness.  Well, I have the same thoughts about myself, as well.  It was sometimes confusing to me, my dad's behaviors.  Sometimes he seemed so with it, other times, very abrupt and demanding and could say hurtful things.  It would catch me off guard.  Add into that recipe of being tired, stressed, having a million things to do to take care of a person, your home, your family, your job and everything else that life throws at you. 


We can't do everything perfectly even though we convince and expect ourselves to.  I do feel badly and guilty for some of my reactions to my father, but I have to look at the whole picture during those times, everything that was happening at the time. 


We did the best we could, if we could have done it better, we would have if it was humanly possible.  The good we did for our loved ones outnumbers the times we feel we didn't do well.  We were tired and stressed and impatient with them.  I think also, the main emotion we may have felt at the time was fear.  The fear of what was happening to our loved ones and the fear of the knowledge that we could not change the course for them, that in itself provides a great deal of stress.


We have to ask ourselves, if it wasn't for us, where would our loved ones have been, would someone else have looked after them, cared about them, stressed over them, loved them?  In my case, no.  No one else stepped up.  We did  the best we could and if we look back and look at the good we did, we would be amazed at our strength and endurance during those times of caring for our loved ones.  We fought a battle for them.


All of the above is something I have to remind myself of on a routine basis and sometimes I need to hear it from someone else.  I think one day it will stick in my mind, at least I hope so, that I did the best I could and everything I did was out of care and love and I did it in my most human inperfect caring  form of a person.

Little Wing
Posted: Friday, September 13, 2013 10:16 PM
Joined: 5/15/2013
Posts: 146

Thanks everyone - your words or a balm (as usual!) and they make perfect RATIONAL sense.  I wish my guilt responded immediately to rational sense, but since I'm feeling fairly irrational it'll be a while.  A good idea is to keep telling myself "I did the best I could with what I knew at the time."  And yes, I truly believe no one else in my family would've done as much as I did for my mom, especially in the beginning.  And I truly believe in my heart of hearts that my mother knows I did my best, because she always thought better of me than I did of myself.  That sustains me as well.  I'll keep trying every day, chugging along!  As I'm sure you all will. Thanks all.  xoxo
Stellar Daughter-In-Law
Posted: Tuesday, September 17, 2013 3:38 AM
Joined: 12/21/2011
Posts: 295

In response to your original post:  I don't know where I fall into the two camps or a variation of either.  I have surprised myself by how little I have mourned or grieved the loss of my loved one.  Oh, it has hurt like hell at times and I think of him all the time still.  (He died 16 months ago.)  But I anticipated the grief being so much more all encompassing.  

I think the reasons are many that it has been a lighter version of grief.  The biggest reason is I don't think I have been able to emotionally fathom it still.  I just cannot accept the fact that I will never see him again.  Sure, I rationally know that and on some level I have gotten used to this idea, but I have never accepted the feeling of it.  He feels with me on a daily basis still.  (I am writing this awake at 4 AM wrapped up in his fleece blanket.)  So my feelings around it all feel very superficial.  I don't know how to access these other feelings.  They don't come often.  And when the deeper feelings of grief come it is a searing pain beyond belief like someone has ripped my skin off and I have to live through suffering that is unreal.  That has happened about three or four times since he died.

Another reason is because he was not my dad, not my spouse, not my brother.  He was my father-in-law.  I only have known him for 8 years, so it must be easier for me simply because of that.  I think I felt closer to him and loved him more deeply than many people love their parents or siblings.  But still, it is not the same.  I never had a chance to know him as someone without dementia, so I am not mourning the past life he had before this illness.

Lastly, there is a story I tell myself, that is true and also helps keep the feelings at bay: I know I did everything for him I possibly could.  Sometimes people thought I was going overboard.  Even on this message board some people thought alright already you solved xyz problem, move on.  But I never let it rest.  I never accepted the care I gave him as good enough - not while he was alive.  I always wanted to do more and give him more to make his life better.  Whenever someone asked how he was doing he never said "Good".  He always said "Better and better."  I feel like that was my motto for caregiving, that I could always make it better and better.  I always try harder and do more.  (I am a perfectionist so this does not surprise me.)  And going overboard while he was alive has helped me now that he is gone.  Having the peace of mind that I did everything I could for him is an incredible feeling.  I don't feel like I squandered any time I could have spent with him.  I wish he were alive still, and I wish he didn't have this disease, but I know that while he was alive with this disease I gave him all I could possibly give.  That adds to a feeling of completion in our relationship.  I feel like job well done on both of our parts.  No regrets.  I get to keep on living, he gets to keep on being dead and while it is sad, it is remarkably uncomplicated and for that I am very grateful.

Thanks for posting this question.  It is helpful for me to write about it.

dj okay
Posted: Tuesday, September 17, 2013 8:51 PM
Joined: 11/29/2011
Posts: 1840

Dear Stellar,


I am so glad you wrote.  I do miss seeing you on the boards.  First, I always enjoyed your enthusiastic approach to caregiving for your dear FIL.  Second, and I hate to admit this, but I've always been a big Katheran Hepburn fan, so I loved seeing your avatar. 


There was something in your post that rang a bell with me....

"when the deeper feelings of grief come it is a searing pain beyond belief like someone has ripped my skin off and I have to live through suffering that is unreal.  That has happened about three or four times since he died."


I had similar feelings for a while after my mother passed away.  I described it as being sucked into a riptide in the ocean and losing all control, not knowing if it would kill me or I would eventually come up for air, gasping and scared beyond belief.  I was always amazed at the intensity of the emotions when the grief would sweep over me.  But you're right, the suffering is unreal.  But here we are...we have survived.


I hear something else in your post that I sort of alluded to in my original post.  And that is the level of involvement you had in your FIL's care.  You absolutely put your heart and soul into it.  You did everything that could have been done and you did it with such total commintment and love, that the void that is left now that he is gone is enormous.


The loss of our loved one is one part of the grief we must work through.  But added to that, in our case, is the loss of the caregiving that became so much of our way of life.  I would almost say it's kind of like we are mourning the loss of caregiving.  I know that seems like a strange way of saying it, but I really felt the loss of that purpose in my life for several months, until I began to find activities to fill the time.  However, there is nothing, and probably never will be, that will mean as much to me as taking care of my mother did.  It seems that you may have experienced similar feelings over the last 16 months.


And I was so moved by the mental picture of you sitting there at your computer at 4 o'clock in the morning, wrapped in his fleece blanket.  I'm sure that brings you comfort in his loss.  I have things of my mother's that are like that to me.


Anyway, I hope you stop by to read this.  And I hope you continue to heal from your grief.  As Johanna said, the hurt is proof that we loved deeply. 


Peace, my friend.

Stellar Daughter-In-Law
Posted: Thursday, September 19, 2013 12:54 AM
Joined: 12/21/2011
Posts: 295

DJ Okay,

Reading your reply is so heartening.  It is pretty awesome to be here on the other side and identify with each other over loss. Something about it is so much less intense than identifying over a particular caregiving issue from when they were alive.  Grief is horrible and hard, but there is a slowness to grief, a long smoldering that feels so much less immediate to me that problem solving the woes of caregiving.  I guess we are not waiting for an ending to happen.  It has happened.  With grief there is intensity of feeling but I guess it lacks the urgency.  Unlike individual challenges of caregiving that resolve themselves for any number of reasons, grief is a process that lingers.  

During the first 6 months or so I felt so lost without the tasks of caregiving.  This is going to sounds like a cheesy bumpersticker but I think that caregiving is love in action.  It was a tangible, do-something-about-it way to love my FIL.  It was a series of concrete actions you could take to show love and fight the sorrow of their suffering.  It is so hard to have that be gone.  I have grown a bit more used to living without it, but it certainly gave me a huge sense of purposefulness and I feel a big area of purposelessness in my life without it. 

I miss the sense of patience that I felt when I was with him.  I miss the sense of entering the world of irrationality.  It forced me to suspend a sense of time and a sense of logic.  I'm a really type A person and suspending a sense of logic is hard for me to do.  Despite how stressful caregiving is, when I got into that bubble with him, that zone of being in his world, it felt like the closest I ever came to meditating or just being calm.  I loved that sensation.  So yes, not only do I miss him, but I miss that feeling that came from caregiving, of being able to shift into another world and of being able to love someone in such a profoundly tangible way.  

Hang in there.  And keep me posted.  It is great to touch base with you here.


PS - I'm glad my avitar made you happy.  It makes me happy too!


dj okay
Posted: Thursday, September 19, 2013 8:24 AM
Joined: 11/29/2011
Posts: 1840

Dear Stellar,


Have you given any thought to doing something with the skills you learned while taking care of your FIL?  I know for me, I feel better when I help others, either in the same situation I was in for years with my mother, or spending a little time with some of those special people at her nursing home that I came to know while she was there.  It is extremely poignant for me, since I would love it to be my mother, but it is still a good feeling to just talk with those precious ladies and hold their hand.


For a while after my mother's death, it was extremely difficult for me to read some of the posts on the caregivers forum.  It brought back so many painful memories and there were many times I could not bring myself to respond.  But I learned so many things over the years, and I survived so many difficult situations, that I wanted to help others who found themselves in the same place.  Nothing else has come close to giving me that "sense of purpose" that I felt while caring for my mother.  It isn't the same, no, and never could be.  But it makes me feel that my journey through the years of my mother's decline and then death were not just for her, but can continue to benefit others. 


Others on this forum have found different ways of filling the void.  Some have families to care for and are now able to spend more time with them than they could while caring for their ADLO.  Some have gone back to work or taken up new hobbies.  My husband and I are able to finally do some of the traveling we always dreamed of doing in our retirement.  But it isn't something where we are always on the road or always preparing for our next trip.  There are many months we are just home and I have hours to fill that I would have been with my mom or taking care of her affairs.  So voluteering has been a big part of my healing.


Everyone has to find their own way through their grief.  But you have always given such great answers and advice to others here that I thought that you might find some solace in helping others in some way.


Oh, and the timing of our grief journey that you alluded to several times, it is what it is.  There is no way to rush it or expect of yourself a certain healing by a certain time.  I have learned that grief is not just an emotional thing.  We are a composite of mental/physical/emotional/spiritual factors.  You cannot look at grief as just an emotion that must be dealt with.  It is physical and it is mental and it is emotional/spiritual (however you define that), all wrapped up together.  Sometimes it is the physical symptoms that let us know that our healing is not complete.  See my post from last April on "Heart vs. Smart". 


There are so many aspects of the grief journey.  I think being the primary caregiver either adds another dimension or compounds the already existing ones.


Anyway, it's good to have you back.

Johanna C.
Posted: Thursday, September 26, 2013 10:54 AM
Joined: 12/9/2011
Posts: 12741

Little wing's writing brought back memories that I experienced. . . .


Guilt . . . . the uninvited guest of the heart; it comes unbidden, unwanted, often irrational, and most often unwarranted . . . but there it is anyway; knocking at our door, stepping into our hearts and into our thoughts. 


After my mother's death, there was much to be done.  The memorial service and family flying in and out of town, guests staying at my home, paperwork to be completed, tasks to be undertaken and processed. 


Then came the space when all the furor settled down and there was time for my mind to float free.  What floated into my mind were all the times when Mom was living at home and I was not the best daughter . . . when in hindsight, I could have done so much better  . . . the times that I was far too human and failed to stay above the fray . . . . the time I snapped at her when she was floridly exhibiting horrid behavior and lashing out at me; the times I had really snotty thoughts about her as she seemed to be doing her worst quite consciously with malice aforethought - of course she did, but her broken brain gave her the impetus to conduct herself in such a manner; you all know the drill - these times happen to most of us . . . and I also felt the other times I felt I had failed her in some way; realistic or not.


The very worst guilt I felt I will title, "Guilt Is A Rosy-Red Robe."  I am embarrassed to own up to this, but own up I shall.


My mother would develop rigid ties to articles of clothing and would wear nothing else.  There was a blouse; then there was a dress that did not even fit her well anymore; they were obsessive fixations that no amount of positive interventions could dissuade her from.


Well; along came the time she fixated on her old, rosey-red colored bathrobe.  It was an old worn out fleece robe, had badly frayed rosy-red piping on the collar and sleeves, and it looked like 80 miles of bad road.  She would not let it be discarded even though she had four other lovely robes.


So the eventual happened, she refused to wear anything else but that doggoned old, tatty robe.  This went on for weeks and weeks and we were sorely pressed to sneak it away at night to launder it. 


And of course, when she had to go to doctor's appointments, she refused to wear anything else other than that tatty robe.  With it she insisted on wearing knee highs rolled down around her ankles and her clunky black leather slip-on shoes.  She refused and fought haircuts so she looked like an uncared for waif.


The straw that broke the camel's back was taking her to her cardiologist's office in her wheelchair in that worn out frayed robe, rolled down knee highs, Kleenex sticking out of her robe sleeves, uncut hair askew and her old pocket book on her lap. 


It took us quite a bit of time in the waiting room.  People stared, staff stared,  none of their business and I simply ignored them . . . . Mom just glared.  She looked uncared for and "neglected" in appearance.  the robe by now had a little split by the elbow.


So . . . .a few days later, Mom had to go for a simple procedure and then on to Skilled Care for a few days after.  She did well with that, but ME?  Well, I saw this as the perfect time to remove the rosey-red robe.


I brought Mom another robe and clothing.  I threw away the worn out robe into the trash.  I feel awful even typing this.


Well of course we know what happened - she later remembered the robe and became insistent I find it.  I was frantic.  She pushed and pushed and was just obsessed.  I finally used one of those fiblets and told her it must have been lost somewhere between the hospital and Skilled Care.


She somehow bought that, but continued bringing up her "beautiful" robe and how much she missed it for weeks afterward.  I realized she was mourning her rosey-red robe which was her comfort and security and attachment from days gone by.  I was able to see that robe was to her what a favorite teddy bear or "bankie" is to a small child.  Oh, woe is me!


If do-overs were possible, I never, ever would have discarded that robe.  To this day, I am ashamed of myself.


NOW . . . .I was the only person helping Mom; no one else stepped up.  I took great pains with every detail to ensure she had the best care and the best quality of life possible.  I went miles and miles far afield to do everything the best I could for her personally, for her environment, for her care, etc.  I truly do realize that I consistently went above and beyond in all instances.  Yes, I do realize all of that really is what counted and was very good.


Yet; there it is . . . . guilt!  Really rosey-red GUILT!


This is when I finally learned; logic and emotion do not live on the same plane of existence.  Logic tells us what is truth and factual; but emotion lives in the heart which operates singularly on feelings and disregards logic and thus comes guilt.


This is also when I had to apply another lesson I had learned by coin of the realm;  There is no perfection - there is only the best you can do under the circumstances with the challenges at hand.


Sometimes we are just so amazing in our care and interventions that we can almost hear the angels singing; and sometimes we have fallen short, but that is to be expected  . . . . . it is part of the human condition.


And . . . we also as humans tend to flog ourselves and blame ourselves for things we need not take upon ourselves, but there it is again . . . humanness.


Sigh.  A big rosey-red sigh. 


Soft hugs and warm thoughts to all,


Johanna C.



Posted: Thursday, September 26, 2013 1:13 PM
Joined: 11/30/2011
Posts: 2105



This is my moment.  The last two weeks of my dad's life.  He began calling out for help continuously, becoming more and more anxious and wanting to be helped continuously non-stop to the bathroom.  I wasn't provided with updates from the care staff.  I would ask them how's he doing, the answer was always the same, he's doing fine.  They finally told me he was calling out for help all during the night wanting to go to the bathroom, every five or ten minutes and it was wearing thin on them and my poor father.  I tried to figure out what was happening, took him to his neurologist, to a urologist, had his nurse practitioner check him out.  Medications were given, but they hadn't kicked in yet.


During this time, my daughter was diagnosed with uterine cancer at just the age of 30.  I was worn thin and frazzled and trying to cover all of the bases with my father and my daughter.


The staff began using a Hoyer lift on my father, no mention of it to me, just saw it one night when I went to visit him. 


This night, I went to visit him, he wanted to go to the bathroom, I did not know how to operate the Hoyer lift and I went to get a staff person to help me, no one in sight, they were with other clients and I told my dad he would have to wait. He kept insisting he couldn't wait, he had to go now, help me now, I can't wait, I have to go, damn it, help me.  I wanted to help him, I couldn't lift him safely into the Hoyer and I didn't know how to operate it.  But he could not understand this and he was desperate and was getting more and more angry at me and upset.


I literally jumped up and down like a little kid having a tantrum and told him he didn't care about anyone except himself.  The words shot out of my mouth and I immediately felt horrible for saying that to my father, my helpless father.  The expression on his face stays with me, the hurt I caused him at that moment stays with me.  I did apologize to him and I said, daddy, I am so sorry, I'm not mad at you, I just couldn't pick you up by myself.  He said he didn't want to be a burden and he cried. 


I've spent a lot of time being angry.  Angry at my sibling for not helping me, for not spending more time with my father, I was angry at the staff, I was angry at the nurse practitioner, I was angry most of all with myself.  I was never angry at my father, although it shot out of my mouth, it was pure fear of not being able to save him from this terrible thing that was happening to him.  The one thing I was on constant lookout for was his death coming, and there it was knocking at the door, and I didn't see it coming.


I was the only one who consistently, routinely, methodically took on my father's care for 13 years. I was under a lot of pressure during this time, the staff was telling me he was doing all of this on purpose, looking for attention, my sibling was telling me he was doing all of this on purpose looking for attention.  I knew that not to be true, something was terribly wrong but the three doctors I took him to, couldn't find anything, nurse practitioner was stumped.  I couldn't find any answers What it was could have been progression of the dementia, or it could have been something medically wrong that went undetected.  I will never know and that does eat me up.  I missed the biggest clue, he was dying and I didn't know it, I kept trying to find the answer to help him feel better.  No one else seemed to have a clue that he was dying either.  Both my father and I became a nuisance in insisting on getting help.  In the 13 years of looking after my father, his safety and comfort were at the forefront of my mind, and his comfort slipped away and I couldn't do anything about it, nothing was helping.


I am trying to move past this, but it definitely is something that is always below the surface.  I did go and speak with a counselor and she did try and help me with these feelings.  I've read books on grief, I've ashamedly talked to friends, my husband, my daughter and here on the boards.   But like it or not, I own these feelings and they are mine to deal with, and I am trying.


I do remind myself I took care of him for 13 years after my mom passed from Alzheimer's.  I do tell myself that while I was not a saint, I wasn't the opposite either.  My priority was always his care, his comfort, his safety and I did the best I could, I always tried.


So thank you for sharing your story.  I do think you are a wonderful caregiver and you sharing your feelings about guilt, is helpful to me and maybe others who are struggling that these feelings are normal and no one feels 100% that they've handled everything perfectly, which is maybe something I've expected out of myself and anything less I felt was my failure.  But the truth is, It's not failure, it's human.  I'm trying to make that my mantra.


I have told this story more than once and have re-read it many times in my own mind, looking for peace with it.  Slowly, I hope to get there.



dj okay
Posted: Thursday, September 26, 2013 2:21 PM
Joined: 11/29/2011
Posts: 1840

Awww, KML, your story brings tears to my eyes and tugs at my heartstrings.  I can understand your feelings of guilt and there is no way for us to "psychologically un-see" something.  I know you can still see the hurt in your dad's eyes and hear him cry.  I'm reaching out to you with a warm cyber hug(((((((((((())))))))))))))


But I also hear that you are making progress in your battle with this guilt and your grief and for that, I am thankful.  We all have that battle.


Unfortunately, I have several of those moments that haunt me.  It has been years since some of them and it took me a long time to get past them, but if I let it my mind will still pull  me back into that place of guilt over some of my "failures".


One of them, in particular, really bothers me.  I was just home a few days from emptying my mother's house and having the estate sale.  I had boxes of stuff I needed to unpack at my house, laundry to catch up on, and I was working full time and still exhausted from the trip and the 100 hours of work to accomplish all that.  While my brother and I were in Alabama, my mother was taken to the ER because her shoulder swelled up with arthritis.  She was prescribed naprosin and because I wasn't there to package it for the in-home aides that were giving her her meds, I had my husband call her twice a day to remind her to take this one med.  Within a week, she had taken 5 more pills than she should have.  I believe she had an allergic reaction to them, had ingested a toxic amount, or she had an anxiety attack or a combination.  But she called me one morning as I was about to start work and seemed very anxious and complained of having hives "all over".   I thought she was exaggerating which was common for her and I tried to calm her down but she continued on this rant until I finally yelled into the phone "I'll be there in 20 minutes" and slammed down the receiver.  When I arrived at her place, I found her in much worse shape than I could have imagined.  She did have half-dollar-sized hives over 75% of her body!  I would have been insane if it had been me!  So off we went to the ER!  And I was prepared to blow her off that morning!  I could barely stop thinking about what might have happened if I had.


I try to rationalize that she had yet to be diagnosed with dementia, although I was pretty sure it's what we were dealing with.  I try to tell myself I was physically and emotionally exhausted at the time.  And I also remind myself, now, that I knew little to nothing about the workings of the mind of a dementia patient.  But none of this removes the pitiful expression on her face when I arrived at her place that morning.


I don't see how anyone that has gone through an entire journey with a loved one with dementia could possibly escape without a few experiences like ours.  Patience is not limitless.  We are human and we will show our human failings during times of exhaustion and duress which are abundant.


We have to learn how to forgive ourselves.  I believe our loved ones already have.

Posted: Thursday, September 26, 2013 2:54 PM
Joined: 11/30/2011
Posts: 2105

dj okay wrote:


I don't see how anyone that has gone through an entire journey with a loved one with dementia could possibly escape without a few experiences like ours.  Patience is not limitless.  We are human and we will show our human failings during times of exhaustion and duress which are abundant.


We have to learn how to forgive ourselves.  I believe our loved ones already have.






What you've said above sums it up and is the absolute truth.  It always surprises how understanding and accepting we can be of each other, but forgiving and understanding of ourselves is slower to come.


That is one of the lessons I am learning from these experiences, to forgive and understand myself for my shortcomings as a human. 


Thank you for putting that truth into words.  

Johanna C.
Posted: Thursday, September 26, 2013 3:31 PM
Joined: 12/9/2011
Posts: 12741

If only we were handed a crystal ball along with the dread diagnosis so we could peer into it and find the reasons and answers for all the convolutions both mental and physical that attach themselves to our LOs as they progress through the different stages of their disease.


We have no way to gauge and interpret all the oddness and strange dynamics that pop up and behaviors that face us - we have absolutely nothing to compare it to.  We have been abruptly air dropped by parachute, blindfolded, into a foreign country, but we do not know which country; we do not speak the language and we do not know which direction to head because no one has given us directions; we do not have a road map.  One foot in front of the other; we often get on the wrong path, or blunder about and have to turn around and go another way.  Not just once, but over and over again. 


There is no way to prepare oneself for this - where in our ordinary lives do we learn about how to handle it all in regard to dementia beforehand?  Where do we gain the absolute infallible insight we wish we had or even feel we should have?


We don't.  We learn AFTER the fact while we are dealing with all the issues.  And "it" can take so many different forms.    We bury our own needs while striving to meet and keep up with all the demands of the disease, the ever evolving changes and our LOs necessities and it catches up with us in one way or another.  I do not believe there is one single caregiver who has never verbally/spontaneously uttered a negative word or phrase or who never took a negative stance and later regretted having done so. 


I really wanted to protect my mother and I really did want to forestall all that was happening to her.  Yet, I never felt more impotent in all my life.  I grieved and was so bereft within myself for her losses.  There was nothing I could really do - so I did "things," instead.  Decorated her room at the NH for each and every holiday.  Wrapped gifts with beautifully colored paper and big fluffy bows; brought her treats that she liked, made lovely little private celebrations with family while she could still be aware of them.  There were times she was not able to be aware of this, but it made ME feel better.


When she became unable to sit up and her speech was pretty much gone, I would sit next to her and recount memories of the past; her sewing, her cooking, her favorite things, Christmases and family gatherings, etc.  I am not sure if she got all of it connected in her mind, but she often would get a small glimmer of a smile.


But I still had those moments of what I saw as failure and some regret and I could not take it back - no retractions available.


My step-dad by this time had developed AD and I had him at home and Mom in the NH.  I often say those times were like I was simultaneously tap dancing, juggling, and whistling "the flight of the bumble bee," all together while trying to handle the heartache.


I did strive but just would feel so monstrously disappointed (guilt) in myself for the times I was impatient, etc.  My stress levels were monumental and sleep was not easy to come and I often woke during the night second guessing myself.


As Mom began actively dying, that feeling of being impotent increased and the feelings became even more intense.  The day of her passing was mercifully peaceful and without struggle or strife.  For that I am grateful. 


KML, you did all you could - the one thing that is often forgotten, is that toward the end stages, as the person progresses in his dementia, very often the person's brain does not interpret signals from the body correctly.


The information signals from the body must travel along the nerves and up the spinal cord and find a way to communicate within the brain.  Well; when there is advanced dementia with severe damage to the brain, those information signals become dreadfully jumbled and it is difficult for the person as well as for the caregiver to interpret what is actually at hand, so the person will complain of one thing that is a misinterpretation, when the signals are actually from some other cause. Communications of the information/message are often just plain scrambled.


This dynamic is not at all unusual and may well be what you were facing and there would have been no way for you to tell or know that.


Another example of that was my step-dad who had two years of terribly severe abdominal pain.  He had three different GI specialists he was referred to; he was given pain medication with no relief; he had MRIs, he was scoped up and down multiple time; labs, everything came back negative.


Then one day when the Neurologists saw my step-dad who was pretty much moving toward the final stage, we were finishing up the exam and Neuro asked me if that was all and if everything else was doing okay.  I said, "Well if it weren't for the constant severe abdominal pain that we can't find an answer for, he'd be in good shape."  (Paraphrasing here.)


Neuro asked some questions and then said, "I think his abdominal pain may be a delusion - the signals going to the brain are not being interpreted correctly.   He actually feels pain but there IS no pain.  He may no longer, at this stage, be able to interpret some signals accurately.  Let's see what we can do."  He prescribed medication and within one day, all symptoms that had plagued step-dad for over two years vanished.


It is something to think about.  Your father may have had the same dynamic which is a fairly common one.  This would very well explain all the negative medical findings and yet the persistent complaint.  And your verbal outburst?  You were exhausted, stressed to the max and you simply reacted to the ultimate in frustration as you were thwarted in getting any assistance.  Most of us would have found ourselves wanting in that situation.


You were a blessing to your father and he knew your love and your care.  I know; words - there goes that logic/emotion disparity thing again.


We have traveled such a strange road and despite being in that strange country without a map, we managed to do an awful lot that was right.


Now we have to remember that.


Johanna C.

Posted: Thursday, September 26, 2013 4:15 PM
Joined: 11/30/2011
Posts: 2105

Thank you, Johanna.  And again, everything written here is a lesson to all of the caregivers, they will read this thread and they will know and understand and hopefully be kinder to themselves when they feel they haven't done enough, didn't do something perfectly.  We learn from one another and we all can offer insight that is very valuable to someone who may feel very alone in their feelings and situation.
one daughter
Posted: Saturday, September 28, 2013 10:36 AM
Joined: 1/30/2013
Posts: 1980

I have 2 stories. 
Me & my daddy
My daddy would always try & talk to me while I was in my mama's room, getting her dressed, or in the kitchen putting groceries away & I would tell him to hold on cause I couldn't hear him. Then when I would go into the living room & sit down to talk to him, my manager would get jealous & get an attitude. this happened on a daily basis. One day after working all day, I was @ their house cleaning out the cat box, talking to mama, talking to daddy, shutting all the blinds, I was getting ready to leave & I opened the front door to head out. My daddy said "baby can I ask you to do one more thing for me?" I said "What now daddy. what can I do for you that I haven't already done today?" He started crying & put his head in his hands & said "I just wanted to ask you if you could tear off this childproof device on my Bic lighter. I felt horrible. So I went over to him, started crying w/him, hugged him, & apologized. I told him that it wasn't him it was me, my fault & that I was just having a bad day. I think about that day & how selfish I was all the time.
Me & my mama
This was after my daddy passed. We took her camping w/us in July. Everything was going fine. Mama was content. Until SD & grandson showed up. All of us in the camper. The TV on, the radio on, the grandsons video game on the cell phone was on, husband & SD talking, & grandson whining. Mama looks @ me & said "I wanna go home". She does this a lot @ her house. I thought oh no here we go again. I told her we would go in a little while. She asked again about 3 or 4 more times. I just stood up & said I gotta get out of here for a minute. By then we did have all the noise turned off. I guess mama thought I was leaving & she stood up & said "I wanna go w/you". She started crying. I said I'm not gonna go anywhere. She sat back down on the couch & scooted over & motioned for me to come sit beside her. I was crying & she was crying. I hugged her & told her I was sorry & told her I love her. It was my fault. Finally SD sees how her visit (w/grandson) was upsetting mama & they left. Mama was fine the rest of the nite & the next morning as I was packing up. However, I wasn't. I was leaving out w/mama while husband stayed behind to lock everything down. He hugged me & I just started crying. When he asked me what was wrong I told him I feel so guilty for the way I treated mama last nite. He said well she's forgotten about it, now why don't you. Because I'm supposed to be the level headed one.
I have always told my husband that whenever my LO's pass, I will feel guilty. He tells me, I have nothing to feel guilty about, cause I've always been there for them & that I've always been a good daughter. But it's stories like these that keep haunting me

× Close Menu