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Caregivers Who Have Lost Someone
For Still Water
Hello there, please forgive my absence on this board. But I just now caught up with some of your postings. From what I can tell, you are heavily into the sixth and seventh stages of grief: i.e. guilt, resentment and anger. You are a strong woman Still Water. Anyone who has gone through this disease process with our LO is. Grief is a specific emotional and mental process that we must go through. It allows us to digest our loss. To analyze and process what has happened.
I can relate to many of your feelings. Both when I lost my mother to cancer in 1992, and my recent loss of my dad in Dec, 2015. Please understand that you are normal and following the normal course for the grief process. It's not fun, and never will be. But these steps you are taking, and the constant nagging thoughts, will eventually get you to a healthy place. Hard to believe, isn't it? I remember walking into a room and not remembering why I was there. Or having a quick thought rush through my mind that it was time to "let my mother out, as it had been 6 months and I had proven myself." as though someone had taken her and kept her locked away from me on purpose. I still have those moments where I feel some guilt because I should be doing something for Dad.
I have experienced the resentment and anger you are also going through. There were plenty of times while Dad was sick, that I just wanted a "thank you" from him, for all that I was doing. I knew I couldn't have that, but that knowledge didn't stop me from wanting it. So my anger and resentment focused itself on my two MIA siblings. The two physically healthy people who should have been helping, but didn't.
I know there really isn't much I can say to calm this grief process you are going through. We all have to take it step by step, and inch by inch. One miserable and unpleasant thought after another, until we process it all. Sadly, one of the next steps is that we "resist returning" as though if we give up our thoughts and our grief, we are betraying our LO. Eventually, we do get to the point where hope gradually comes through, and finally, we struggle to affirm reality.
Still Water, you were a wonderful daughter! You gave your mother the very best you could. You gave her so much more than most people would ever consider doing. You were tireless in your efforts, loving and kind throughout these final years. But as we all are, you were powerless to prevent her death from AD. This disease has a 0% survival rate. Someday, you will get to that healthy point where you can let the rest go, and see what all of us see. A strong, healthy, independent woman, who did the very best she could with the ugliness of Alzheimer's. You are to be admired and celebrated for the person that you are. And someday, you will get there. In the mean time, we're all here for you.
Wow thank you for taking the time to write me that thoughtful
message. Your right. I am in the anger stage I have sensed that for a while
now. Angry at the agency, angry at some of the aids, angry at the doctor, angry
at Hospice, angry at my sibling (like you) for not helping, angry at all of my
family members for not offering even one hour off, but most of all angry at
myself. I don't like being alone. How could I have not seen this coming? I
could have and should have fed her and hydrated her. Even if she did not want
much to eat, I should have gave her something when he was hungry and thirsty. I
should have kept her alive. I should have and could have. I hate myself. It
also dawned on me yesterday, that although my mother loved me, that was obvious
even until the end, she did not care about me. She could not care about me. She
forgot how to. And so that I think was also part of my resentment. So in the
end, no one cared. And I let her go out of resentment towards everyone. I went
too far. Now I have to live with that. Somehow... But thank you for reminding
me that this is all normal. Its very hard to feel normal because nothing is
normal anymore. My entire life has changed and I miss my mother terribly. More
than I ever thought possible. Thank you for praising my efforts. It sure does
feel good especially coming from someone like you who did the same, who gave up
your entire life as well.
I'm going to share a paragraph that I wrote in a chapter titled: I Don't Want This For Myself (page 520)
I remembered that day, Tuesday, June 10th, 2014, that very first day I picked up his fork and fed my
father. All the times that I asked “why does this disease have to take so long to reach it’s end goal of
death?” And now finally, I realized that it is because, sadly, we lovingly intervene. If his disease, at that
time, had been left to it’s own ugly devices, my father would have then died in 7 - 14 days. But because I
had fed him, this disease process was allowed to slowly move on. This final stage, for us, was the
complete result of my “love”. That’s a pretty hard thing for a daughter to admit. And someday I hope, that
my father will understand. I honestly meant him no harm.
Ok, so here's the point. The grieving process will always contain a period of guilt. It doesn't matter what we do, how well we did, if we made the right decisions, if we made wrong decisions, if this is what our parent wanted, or not. NONE OF THAT MATTERS. We will always find someway to question, criticize our own efforts, tell ourselves we should have done it different, and find a way to accept the responsibility of it all. We will each convince ourselves that we did something wrong, or should have done better. That is part of the process of grief.
Still Water, if this feeding issue wasn't on the table, I promise you'd come up with something else to take it's place. You'd find something, because we always do. THAT'S GRIEF! You would feel that you didn't spend enough time with your mom, that you should have quit work, or taken her from the nursing home sooner, or anything else that you could find a way to blame yourself for.
As you know my dad did all 7 stages to their bitter ugly ends. MyParentsSunshine and I have talked about this end stage, and the feelings that creep in for the caregiver who loves their parent. I am so glad you and your mom didn't have to do that awful, dreadful, final stage. Girl, you are my hero, and the child I hope to have someday if I get this God awful disease. Now here comes something I have rarely admitted. There were times in those long, drawn out, final months, where I knew this is not what my dad wanted. There were times when I would sit in bed with him, and in my mind I was saying, "If I put a pillow over his head and laid on it, he wouldn't fight me." Did I want my dad to die? NO...........but just as MPS mentioned, this end game is simply cruel and unusual punishment. NO ONE SHOULD EVER HAVE TO GO THROUGH THIS!!! And for what, just so they can suffer longer? So if you want to get your feet stuck in this "I should have kept her alive longer, I should have fed her." and the guilt you are feeling, I'll walk right along with you. But my banner will be, "I wish I had ended his suffering sooner." I too, loved my father with all my heart. I wish this disease never existed. I wish your parent and mine, never had it. I wish there is never another daughter who feels she let her dad down like I did. Or another daughter who had to secretly pray for her father's death in the middle of the night, like MPS. Or never, one more daughter who thinks she could cover her father's head with a pillow, just to put him out of his misery.
Sooner or later, you have to put this guilt behind you. Do it when you are ready. Do it when it's time. But do it for yourself and for your mom. I remember on one of your posts, you talked about how strong your mom was. How she raised you kids alone, all by herself, and she always worked so hard. You are part of her. You are that same strong woman she always was. And the best way to honor her, is to stand proud an tall, knowing you did right by her and the very best you could. You are her legacy, and my money is on the fact, that she wants you to continue happy, healthy, and proud of the wonderful loving care you provided.
Grieve all you must with this life changing experience. But privately promise yourself, that someday you will quietly put down this burden of guilt, and carry with you to the future the love that you shared, and the knowledge that it was truly AD that ended her life.
I am feeling so loved that the both of you took the time
to care about my issues.
MPSunshine: Thank you for finally coming to this side of
the message boards. We need you here. You were my one and only supporter of
taking my mother home under the Waiver Program. I have been on the boards for
years but became hated (resented) for a long time, for taking my mother home,
and I was always too busy to reply and try to help others, so I just lurked. All
along knowing what I was doing was the right thing so it never bothered me. When
you wrote "there were these tiny little glimmers and he truly tried so
hard for us, he really did, that was what hurt my heart was that even in his
most difficult moments he exuded love, love, love" Same with my mother. That
is what hurts my heart. She did not want to die. She was strong, she tried. Everything I
asked her to do, she tried to do. Brushing her hair, sitting up in the bed
herself, walking. She tried. She also never stopped loving me. Tight hugs,
always holding hands, always kisses. She never gave up --- I gave up. For the first
time in 15 years, I gave up. What drove me to that madness? You are also right
in saying, I was isolated, did not get good advice, I was worn out and tired
and I broke. But a nursing home, to give someone else my problems to deal was
never an option. And I have no regrets that I was the one to end her life while enjoying the peace and comfort of home. I just think I should have waited a little longer, weaned her off food
gently till she died. But I don't think I would have wanted to watch her suffer
that long. The aids would have not complied. And what would have been the point? I continue to negotiate with myself
to this day.
HisDaughter: I am working very hard at trying to get rid
of this guilt. I am going from therapist to therapist, bereavement counseling, reading
one book after the next, low dose of anti-depressant and sleep meds.
Just when I think I am okay, I start to miss her and then the guilt creeps back
in. Back in 2014 when you picked up that spoon and fed him, I don't think you
were ready to let go. I am sure he was a much stronger alert man then the
father you watched pass away. I think it is only after years and years of
watching them get worse that we get the strength to want to let them go. You
wrote " I remember on one of your posts, you talked about how strong your
mom was. How she raised you kids alone,
all by herself, and she always worked so hard.
You are part of her. You are that
same strong woman she always was. And the
best way to honor her, is to stand proud an tall, knowing you did right by her
and the very best you could. You are
her legacy, and my money is on the fact, that she wants you to continue happy,
healthy, and proud of the wonderful loving care you provided." That made
me cry. I think about what you wrote all the time about my mother and about myself. I want to feel that way. I think I deserve to feel that way, but today, I
don't feel like I did the best for her --- in the last month of her life. Thank you for having faith in me. I am
working on it. I promise you.
Good! I'm glad you are. It's always easy to think that we could have done something better or different. But the reality is, Still Water, that there is a 0% survival rate for this disease. You may have been able to keep her alive for another week, month, or year, just to allow this disease to progress. But death was ALWAYS GOING TO BE THE OUT COME. There is nothing you could do to change that. No matter what you did, your mom was going to die. AD always wins this battle.
For those of us who have done the 7th and final stage to it's bitter end, we wish we could go back and find a way to end the suffering sooner. I still see absolutely nothing about my father's final year of value, he simply had to endure longer. That's it. And for what? So that the final week he could be in horrible pain with even a position or depends change! He couldn't walk, talk, smile, hold his head up, and he could barely chew or swallow. He rarely opened his eyes. Someone is going to have to look in the tear stained eyes of this daughter, and explain to me how we as a society see this as compassionate! I for one, am so glad your mother did not have to endure that. But my bet is, I'd be standing in a long line of people who agree. And your mom would be the first person in that line. She wouldn't have wanted to do that final stage. No one would. It's ugly, cruel and inhumane. And the sad part is, Still Water, my dad had the very best of situations. He was home, loved, supported, one-on-one care, with His Daughter right by his side. There wasn't one thing that we didn't do to make things better, or at least as good as they could be, throughout this entire process. He had it better than most people do. Yet this ugly, disgusting, disease process makes it horrible.
So think of me and my dad, the next time you feel guilty. Ask yourself if you really think your mom deserved to experience that final stage. If that is what SHE would have wanted. Cause in my opinion, no one wants or deserves that.
I wanted to end my mother's suffering sooner. I begged hospice to help, I yelled at them to help. It was terrible seeing my mother in such pain. Hospice could only do what they could within boundaries. Mum was dying, I wanted her to die sooner rather than later. Our society doesn't provide well for our gravely ill and suffering and dying -- we do far better for our pets. Yes, we managed to keep my mother out of pain at the end, but at the cost of her having no idea what was going on.
When my time comes I'll go out my way, on my time. (I hope)
I do not want to even imagine how hard it would be to see someone die in pain or to be in pain and not be able to help.
My husband was never in pain. He stopped wanting anything to eat or drink. We offered...he refused. It was that simple. Never did Hospice say to stop feeding only to offer and back off when refused. He diet became totally unhealthy...a lot of orange sherbet or maybe some fruit I had pureed (sp). He was given small doses of morphine on a regular basis his last few days. He became less and less in contact but knew me until he fell away and then died. It was a matter of hours.
My heart cries with those of you who had to witness the pain you are talking about.
Thank you both Moish and Jfkoc for adding to this post. I hope talking about our stories helps Still Water let go of some of her guilt. We all know she has to go through this process, but anything we can do to help is a benefit.
In my book one of the things I wrote about is this final stage. Nothing prepares you for this. The books say very little. And for the first time tonight, I just saw that the Alz Association is now going to do a class on the final stage. (Finally)
There's a paragraph in my writing where I talk about how all the experts want us to believe that our LO is still in there somewhere. There were times when that thought was a comfort. And then there were times when that thought was my worst nightmare. My father would never have approved of his condition, and never would have wanted it to continue. Yet I was helpless to do anything to end his suffering. Moish, I completely understand your begging Hospice to help. Since I wasn't doing Hospice, my begging was with my deceased mom. Toward the end I didn't beg, I demanded she come back and get him.
And jfkoc, I also had morphine in the final week. But I still don't think it was handling all his pain with rolling him for position or depends changes. His eating slowed also, and his swallowing became very difficult. I did just as you did, offered, but allowed him to accept or refuse food and drink.
I know this offends some people, but I'll say it again. This country has got to get a grip on reality and compassion!! This just isn't right that terminal people are not allowed death with dignity. We treat our pets better than this. And this disease takes the cake in the cruelty game.
Like you mentioned, your reasoning is 100
percent right. There is no cure. There would have been no decent ending except
for a peaceful death which none of us are guaranteed. If she did not die from
dehydration she would have died from either aspiration pneumonia or sepsis because
otherwise she was healthy. His Daughter It was good for me to know, your father
had the best care possible because that also plays a big factor for me as far
as my guilt goes, my mother also had the best care possible so I thought that
somehow I could and should have created a peaceful death. But if you could not,
then I could not either. That is reassuring. I can feel the anger in your sole
when you wrote that message to me, you must have been terribly tormented for a
long time. I have also begged my father who passed away to take my mother, so
that I would not have to. He did not listen. I had to.
My mother has been in stage 7 for 5 years. She was total
care but in no pain. She was alert, sitting up in the wheel chair all day,
going to day care once a week watching TV, communicated some, however refusing food and liquids for 5
years. Personally I think she was just
not hungry and also too confused to understand what food was. She had no
swallowing problems but was on a pureed diet. We feed her by hand for 5 years
by coaxing her but she never enjoyed eating. Once in a blue moon, she would
take the cup and drink herself and when she first got home from the nursing
home she was feeding herself, but after a while that stopped. So after a
non-life threatening kidney issue we got Hospice to the house, they observed
her refusing foods and liquids and told us to not "force" her. I took
it as an opportunity to let her die knowing her life would never get any
better. There was no fun or joy or laughter anymore in her life. Just quiet
confusion. She was just existing. I stopped all food and hydration. The first
day she wanted nothing. The second day she wanted a little water. The third day
she wanted food and water, but I gave her nothing but small sips of water. Then I watched her suffer for 9 days. I took
a photo of her on her third day of not eating or drinking, the look on her face
haunts me. She looks angry at me for not feeding her and she looks so skinny. I
took another photo of her when she got to the Hospice Facility. She had a
serious frown and a wrinkled brow. She was suffering. And now I am feeling
terribly guilty and missing her.
Last night, every time I started to feel
guilty I thought of your father and your story. And it helped. I will keep
Guilt is a killer, please don't rehash all you should've could've done differently. You will never have a moment's peace. Stay in professional counseling until you are ready and willing to say I did everything I could, my conscience is clear, I loved my mother with all I had. It is over. She no longer suffers. I am grateful for that.
Our situations were much different, my father was in a Care home which was a necessity to keep him safe. I praise God for those who cared for him and grew to love him dearly. I was his consistent companion. He adored me and vice versa. He gave up food and drink on his own. It was a peaceful loving passing with Hospice.
None of us will ever get over being abused by this Disease, not a one. I wish you Peace in your days ahead and hope that you can move forward bit by bit into the land of the living. Your mom would want you to. Yoga is great, meditation is great. Most of all finding your tribe to continue on life's ride with. Peace. Ecclesiastes 3...for everything there is a season.