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did you get a chance to grieve your diagnosis yet
alz+
Posted: Wednesday, February 17, 2016 2:13 PM
Joined: 9/12/2013
Posts: 3608


Have been thinking about the anxiety that comes with neural diseases and felt there was a connection, for me, in never having knowingly grieved having been given a diagnosis of a terminal illness.

The way others claim we have nothing wrong with us, the way they expect us to keep performing, the lack of acknowledgement that we are feeling our mortality even if no one else wants to acknowledge that, and this lack of comfort towards this future outcome may contribute to that anxiety.

The doctor who did diagnose me was an elder Indian neurologist at a University Hospital. He treated me like a friend and I responded. He was sad to tell me "Alzheimer's". He told me how much he loved working with  people who had it and that he was "sorry" to have to bring me such news.  2 weeks later he was forced into retirement, his replacement was of no use to me, cold, rude, short tempered. But I had that kindly 15 minute office visit to hold on to.

Then I had to "protect" my adult children from fearing they might one day get it. Then protect my Mom from having to be sympathetic. Keep up a happy face (total failure) around my Husband. My brother and sister assumed I was just "attention seeking".

When and how did I mourn losing a future with my grand kids? Not being able to earn a living? Needing to give up on most things I loved to do, facing future helplessness, being unwanted at funerals, certainly getting my time clock punched.

I remember when I wanted to discuss end of life with my son and his wife called me "morbid" and made a face. End of discussion. Never any mention of it with her since.

was wondering if and how other people have mourned getting a terminal diagnosis?

do you think mourning, coming to acceptance has made a difference in the course of your illness? In you anxiety and anger levels?

My husband has recently been helping much more, we are both smiling most days.


abeautifulwaytolive
Posted: Wednesday, February 17, 2016 5:43 PM
Joined: 8/17/2015
Posts: 86


I comment here to offer some insight that might be of use. 

I, as a care partner for my mother, am constantly battling my feelings. It's so hard not to make it about myself. MY mother is dying. I'M too young for this. How am I going to deal with her decline. And I have to remind myself my mother is a strong woman who is dying. She used to always know what to say and now she hardly says anything. She was so smart and now she is watching her brain die before her very eyes. And she also has to constantly reassure me that it's going to be okay. Which is so backwards.

I now focus on the now and spend as much time with my mom and make this as good an experience as I can for her.

I guess my point of posting is that I feel like I made it almost impossible for my mother to grieve her disease and maybe with the help of others, we can figure out how to change that.


alz+
Posted: Wednesday, February 17, 2016 6:58 PM
Joined: 9/12/2013
Posts: 3608


beautiful wat to live - my love to your Mom and you. 

***********

I saved these from a week or so ago, looked how Grieving a terminal diagnosis:

http://www.terminalillness.co.uk/accepting-terminal-illness.html

"

Working through Emotions

 

Many people go through their lives doing their best to control and conceal heir emotions, especially feelings of fear, anger, or sadness. Discomfort with emotional expression can hamper the process of accepting a terminal diagnosis, however, and can make grieving a much more painful process. All people experience both positive and negative emotions, but some feel the need to act upbeat, even if that is contrary to what they are feeling inside. It is important that those closest to a terminally ill patient encourage them to express themselves freely as talking about their feelings can help terminally ill patients to work through them, leading toward calm and acceptance.

When they are first diagnosed, many people are determined to fight and win out over their illness. While refusing to give up easily is a noble act, some terminally ill patients will not beat the odds. There is no shame in coming to a point of acceptance of a terminal illness; in fact, quite the contrary is true. Once a patient is comfortable that they have done all that they could in hopes of regaining their health, accepting the inevitable can help patients to make the most of the time they have left, focusing on the quality, rather than quantity of their remaining days."

Working through Emotions

 

Many people go through their lives doing their best to control and conceal heir emotions, especially feelings of fear, anger, or sadness. Discomfort with emotional expression can hamper the process of accepting a terminal diagnosis, however, and can make grieving a much more painful process. All people experience both positive and negative emotions, but some feel the need to act upbeat, even if that is contrary to what they are feeling inside. It is important that those closest to a terminally ill patient encourage them to express themselves freely as talking about their feelings can help terminally ill patients to work through them, leading toward calm and acceptance.

When they are first diagnosed, many people are determined to fight and win out over their illness. While refusing to give up easily is a noble act, some terminally ill patients will not beat the odds. There is no shame in coming to a point of acceptance of a terminal illness; in fact, quite the contrary is true. Once a patient is comfortable that they have done all that they could in hopes of regaining their health, accepting the inevitable can help patients to make the most of the time they have left, focusing on the quality, rather than quantity of their remaining days."

.......................

many people do not seem to understand being diagnosed with Alz is a terminal diagnosis, they act as if it is same as being aware all living things must one day die.  they seem to speak differently, with compassion and shared sorrow towards any other terminal illness.
 for some reason many of us were not allowed to grieve our diagnosis, our future of losses and coming death. seems if we can,and then come to terms with it, life would be easier to handle. 
For some reason one night I thought high anxiety was from lack of grieving. 
any insights on this?
 

alz+
Posted: Wednesday, February 17, 2016 7:14 PM
Joined: 9/12/2013
Posts: 3608


.http://www.hospicenet.org/html/help_yourself.html


from article:
"

  Hospice

Helping Yourself Live When You Are Dying

You have learned that you are dying.  The thoughts in this brochure are intended to help you deal with this tension and to continue to live even though you are dying.

Acknowledge You Are Dying
 If the onset of your illness was sudden or unexpected, you will likely feel shock and numbness at first. This is a natural and necessary ...

You can only cope with this new reality in doses. You will first come to understand it with your head, and only over time will you come to understand it with your heart.

To acknowledge you are dying ... There is no easy way to do this, and you will probably struggle with this task every day until you die. Know that acknowledging the reality of your coming death, , instead of denying it,  will open your heart and mind to the possibility of a new, rich way of living.

Questioning the Meaning of Life
Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears and hopes. Illness establishes new directions and often causes some questioning of old directions. ...

Accept Your Response to the Illness
Each person responds to news of terminal illness in his or her unique way. ...be it fear, excitement, anger, loss, grief, denial, hope or any combination of emotions.

... discover how you will live with your terminal illness. Don’t let others prescribe how you feel; ...there is no right or wrong way for you to think and feel.

Respect Your Own Need For Talk, For Silence
You may find that you don’t want to talk about your illness at all. Or you may find that you want to talk about it with some people, but not with others. ... 
But if you don’t want to talk about your illness, don’t force yourself. Perhaps you will be able to open up more later on...

Telling Your Family and Friends You Are Dying
Your family and closest friends deserve to know that you are dying.  If you simply cannot bring yourself to tell them, find a compassionate person with whom you can entrust this important task.

Be aware that everyone will react differently to your news, ... Some will refuse to believe it. ...

Many will not know how to respond...they may even avoid you altogether. Know that their apparent abandonment does not mean they don’t love you.

Even children ... can cope with what they know. They cannot cope with what they don’t know. ... do answer any questions they may have.

Be an Active Participant -... this is your body; your life. Don’t fail to ask questions that are important to your emotional and physical well-being out of fear that you will be “taking up someone’s time.”

Learn about your illness. ...

. You may not be in control of your illness, but you can and should be in control of your care.

Be Tolerant of Your Physical and Emotional Limits
Your ability to think clearly and make decisions may be impaired. Respect what your body and mind are telling you. 

Say Good-bye
...When you feel you are ready, consider how you will say good-bye. You might have a gathering for friends and family. Other ways of saying good-bye include writing letters, creating videotapes and passing along keepsakes.

Find Hope
When people are seriously ill, we tend to get caught up in statistics and averages; How soon will the illness progress? How long do I have left? These can be helpful but they don’t provide spiritual and emotional comfort.

Even if you are certain to die from this illness, you can find hope ... finding meaning in life, whether that life will last five more days, five more months or five years.

Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. ... Allow yourself to be around people who understand and support your religious beliefs...Find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.

Reach Out For Support
Many of us grew up believing, “Do it on your own so you don’t have to depend on anyone else.” But confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to your fellow human beings. ...

Hospices are an indispensable resource for you. Their mission is to help the dying die with comfort, dignity, and love, and to help survivors cope both before and after the death. They often offer support groups for people with life threatening illness. You might also consider seeing a counselor one-on-one.

Whatever you do, don’t isolate yourself and withdraw from people who love you."



alz+
Posted: Wednesday, February 17, 2016 7:29 PM
Joined: 9/12/2013
Posts: 3608


http://articles.chicagotribune.com/2011-04-19/health/sc-fam-0419-new-grief-20110419_1_terminal-illness-cancer-survivors-diagnosis

if interested you can copy paste links or search for information on your own. 

I am still looking for something else but here is summary from link above:

"Over the years, experts have proposed many models of grief to help people understand what they're going through...

Elisabeth Kubler-Ross introduced the "five stages of grief" (denial, anger, bargaining, depression and acceptance) in 1969 in her book "On Death and Dying." In those days, unexpected death was more common than it is now. ....

"...One book argues that this changing reality has changed the grieving process as well. In "Saying Goodbye: How Families Can Find Renewal Through Loss" (Berkley, $26.95), Barbara Okun, a psychologist and clinical instructor at Harvard Medical School, and psychologist Joseph Nowinski propose a new five-stage model — crisis, unity, upheaval, resolution and renewal — for what they call the "new grief." Okun addresses some of the issues involved:

Q: How does the prolonged nature of terminal illness affect grieving?

A: (It makes) people more conscious of time, of being together, and being sure they do what they want to do.

It also gives people time to think about not just the patient but also the family. How do we want to be? How do we have those difficult conversations that we've never had before? How do we find out what the patient really wants? So it gives you time not just to prepare for loss but also to prepare for living — for living with uncertainty, and for living beyond loss."....

" in the first two stages — crisis and unity — you're very task-oriented. There's so much to be done, so many arrangements to make. In the upheaval stage, it's like being on a roller coaster. You can't really plan. It just feels like everything is out of control and you don't know what to do. You feel ambivalent: When is this going to be over? How can I stand this? I'm going to lose my job if I don't go back to work! Who's going to take her to chemo next week? Who can I rely on? And, What about me? People feel guilty for feeling that way, which causes more anxiety. If only they could realize that all those feelings are normal.

Q: So what do you do at this stage?

A: You need to get yourself some respite. Go for walks, get massages, go to the movies, listen to music. Whatever works for you. You need to get some balance." ....

*******************

I will say good bye to the trees I pass on my walks. I say good bye to things, and clothes. I wrote love letters to my children, to my mother.

I burned my journals that were just chronicles of sadness and despair. some times I lay by my dog and just enjoy her presences, her sounds, her smell. I do pray, I do find I do most of my deep feeling stuff in prayer.


I wanted to have a life celebration party but now...maybe a very small party. I don't know, a good cry is always a huge help. Gets old to be up beat all the time, like protecting the world from my little sorrows and disappointments.


BillBRNC
Posted: Wednesday, February 17, 2016 7:57 PM
Joined: 12/2/2015
Posts: 1018


I wasn't going to reply to this topic, as I have a unusal situation. 6 years ago, I was told that I had less than a year to live due to heart failure, unless I had a heart transplant. Then, even with the transplant, I probably only had 5 years left, maybe a tad more. Then a few months later, they told me I had little chance of living 30 more days without a transplant. For the next 6 months, I lived with the Grim Reaper walking a step or two behind me while awaiting a transplant. Then I started to improve enough to get off the list. Then for the next several years I got a tad better, then I found out about Alzheimer's. I can't really say how I felt years ago or how I feel now. It is what it is, at least that is how I thought about it back then, and it is how I think about it now. The Reaper is still walking behind me. I mean it, I can see the guy smiling at me all the time. I really do, I'm not kidding. We all die at some point in time, some sooner than others. I don't want to die, but I don't care to live unless I have a tolerable quality of life. It is what it is. I haven't actually thought a lot about the Alz thing yet. I guess I will after I get a second opinion, but I'm still under the gun from my heart failure that also in incurable. It sucks, but there is nothing I can do about it. I have much greater fear of Alz because of what it means to my quality of remaining life and what it means to my family. It scares me, like nothing I can recall in the past, much more so than the heart thing. It might be because my mom had Alz, and saw what it did to her. I don't want to think about this anymore, but I thought I would just pass comments along for what worth. My love to all.
llee08032
Posted: Wednesday, February 17, 2016 10:36 PM
Joined: 5/20/2014
Posts: 4408


Life is not sunshine and roses everyday for me and sometimes I need to talk about that too.

I sent my son to the grocery store Sunday. He comes back all upset say's he got confused in the store and then got lost on the way back to my house which is only 10 mintues from the store. I wasn't sure how to respond! He asked if he was too young for this to be happening? I tried to comfort him and said you are too young for this to be happening. Don't worry etc. I see the realization setting in as he spends more time with me. He seemed shocked when I told him about my blow up at work. I want to both prepare him and protect him all at the same time.

I'm still trying to figure out how to deal with all these arising issues. My youngest son lives out of state and I haven't told him anything yet. I won't tell him on the phone. I'm not sure if anything has been said to my granddaughter or if I want her to know at all.




alz+
Posted: Thursday, February 18, 2016 6:38 AM
Joined: 9/12/2013
Posts: 3608


sorry for those long copy paste posts above.

Bill, yes you already went through this when doctors told you your heart was failing.

Maybe I have grieved in other ways too without knowing it. 

COME TO TERMS with illness. Yes, I lowered my expectations of others, then I lowered my aspiration bucket list.I send my grand kids a box twice a year full of weird stuffI find in the house, from sea shell collection, ot odd ceramisc, vintage remains from my ebay years.
 
old fur hats, puzzle boxes, stuff. maybe our illness is too long and unpredictable to grieve it.

I still have not looked into old littlehouse in town that says SENIOR CENTER on it, my dream of close by group is fading. i would like to take a modern dance class. i amchoosing to stay in this house which is ultra rural but there is town 15 miles away with a college and theatre and dance c ompanies and stuff.

my visiion is so fogged and the print is so tiny I just can not type with out a struggle.

maybe someone will cut through those copied posts and know what i can not express. i feelit inside me, this lack of having some family sympathy before i got my walking legs in regard to illness.

one friend said about how his mom was doign with alz diagnosis, "we are taking it philosophicly," and that helped. oh these eyes.dag nab it.

love toall


llee08032
Posted: Thursday, February 18, 2016 9:46 PM
Joined: 5/20/2014
Posts: 4408


((((alz+)))) 12 inch notebook?
Iris L.
Posted: Thursday, February 18, 2016 11:16 PM
Joined: 12/15/2011
Posts: 18508


When I was told by one geriatrician that I had to accept that I had dementia, I fell into a deep depression.  What got me out of the depression was my decision to fight for myself.  I decided I was not going out without a fight.  That's when I took Best Practices seriously.  This was in 2010.


I also began to read obituaries and stories of terminally ill people.  I learned that they mostly wanted to be with their families and other people close to them, and they wanted to keep on doing what they were doing.  


My family is not long lived.  Many of my relatives died in their 50's, even late 40's.  My father died suddenly at age 58.  When my Mother was my age, 65 years, she appeared to be in good health, and she enjoyed her retirement.  But she developed cancer at age 68, and passed away at age 70.  She did not have dementia.  My grandmother also died at age 70.


I feel that even with dementia, we do not know what is in store for us.  Some will die of dementia, and some will die of another cause.  I am not going to sit around and wait for the Grim Reaper.  


The actuarial tables say I have about 20 more years.  With my family history, I feel like I've had a good run, and it's all gravy from here on out, 20 years or one year.  But I do not feel like I'm on the way out right now, despite the fact that I have developed a new symptom.  I am more concerned about my daily life now, not the end.  But it's good to prepare for the end, as much as we can.  Thanks for posting this thread, Alz+.


Iris L.


 


BillBRNC
Posted: Friday, February 19, 2016 6:31 AM
Joined: 12/2/2015
Posts: 1018


Iris, you take care of yourself. Heck, you take care of most of the rest of us, so you must take care of yourself first. You are right as can be about living each day to fullest and making the best of whatever time is left, without keeping time along the way. I've already outlived my Dad and one of my brothers, so I'm a lucky fellow as it is. I don't know where my brain came up the picture of the Grim Reaper following me, but it did and I seem to be stuck with it, but I see it as more of a joke than something serious, at least that's how I'm trying to look at it. Every day I wake up is a good day, plain and simple. I'm going to go for a long walk later this morning. It is sunny outside and in the low 20s, should warm up to freezing by late morning. Just a perfect day to enjoy being alive. You take care, Iris.
llee08032
Posted: Saturday, February 20, 2016 9:56 AM
Joined: 5/20/2014
Posts: 4408


I don't feel like I have fully gotten the chance to grieve diagnosis and sometimes the emotions and feelings of loss sneak up on me and catch me off guard. I'm not trying to be negative but it is what it is and I don't feel I have time to grieve because I have to paste myself back together for work too quickly and put on my happy quote, unquote normal face.  Sure I allowed myself to roll up in a ball for a couple of days here and there but I had to get back up and get into survival mode. Truth be told that's my fight right now just trying to survive day in and day out. Just like the alcoholic gets another day of sobriety (a gift and blessing if there ever was one) I get another day out in the world of normal living one day at a time.

Some days it's a damn hard struggle like Sisyphus trying to roll the boulder up the mountain and I'm stuck at the bottom pushing with all my might and will...and it's so hard pounding and pounding at the same mass of stone. I'm not perfect, I make mistakes everyday. I'm certainly not perfect at best practices or  at every thing dementia and I can't say "I got this" or that I can show you how to "get this." I'm still a fallible human being and now a cognitively impaired very fallible human being.

It's when I give up the struggle of pushing the boulder up the mountain and surrender my power to the All Mighty that I have power. It has nothing to do with me. It's a constant struggle keeping my ego and id out of the way and not letting it get in between Him and I and others. And wouldn't you know it...when I do puff out my chest and get all fluffed up about myself He knocks me to knees and I surrender all over again and again and again. That's my best practice.


llee08032
Posted: Saturday, February 20, 2016 10:39 AM
Joined: 5/20/2014
Posts: 4408


The supernatural world of spirituality needs to be added into best practices also. I cannot spell Mediterrean diet today but that's okay too. But there is no diet, exercise regimen or amount of socializing that can beat, touch or come close to Best Spiritual Practice. I got another 4 days out in the work world of normal this week and I really didn't have to do anything but surrender and get myself out there. This where I stop bragging and surrender my will because of my deep faith I know that know matter what I do whether or not I progress  and at what speed I do or don't progress it WILL be HIS WILL and not mine. I am moved to say it's my turn to brag about my Best Spiritual Practice and for me that's the only practice I need to concern myself with because w/o it I have nothing, zilch, zero!

I can't take the darn pills! When I get done working I'm too tired to exercise. I talk all week in work and need to decompress and I socialize at a minimum these days. I've added fresh fruit to diet but I'm concerned now about fish and mercury. I'm a cannibal who likes red meat, big juicy burgers, and an fallialiable human. Sometimes when I speak about my life and what I'm dealing with I tire about hearing about how I need to eat fish to make my life better and more fulfilling. I take fish oil pills. When I speak about pain and sorrow I need compassion not an insinuation that I'm being negative and not practicing Best Practices well enough or good enough. 

IMO we're not talking about Spiritual Best Practice enough. 


The_Sun_Still_Rises
Posted: Saturday, February 20, 2016 1:24 PM
Joined: 7/24/2015
Posts: 3020


I think we each person be wonderful glorious mix all things...good an bad (I try no judge them this way).  We have pain sorrow, an joys, accomplishments.  Just like earth be have sun an rain an both be needed make life be happ here.

I happ agree with you re spiritual practice...as means much more me now that progressing...an harder do.  It be bring much satisfaction, peace me...hope it be do you too. 

Surrender this disease be a hard one...which funny since ultimately we have no choice but surrender it.  I find it both defeating an peaceful calm this slow surrender into it. 

I love be see you spiritual side, I hope you will be share more it.  Welcome weekend Llee.  <3


Michael Ellenbogen
Posted: Saturday, February 20, 2016 1:45 PM
Joined: 11/30/2011
Posts: 4460


Not sure if it’s my memory effected here but I don’t think I can honestly say I know the answer. I pushed on so hard with so many things around that time which lead to my advocacy and I have been so busy with it. I try to not allow myself to not have something to do as I know I will spiral down if that happens. Is that my defense mechanism . I know I am not in denial that some may say. I have very clear picture, probably better than most. I also stopped thinking about it at this moment because I don’t want to open up something I may not want to know. Is that even possible?

 


llee08032
Posted: Sunday, February 21, 2016 7:30 AM
Joined: 5/20/2014
Posts: 4408


Sun, I surrender to God not the disease. Hope that clarifies.
llee08032
Posted: Sunday, February 21, 2016 7:46 AM
Joined: 5/20/2014
Posts: 4408


Michael, 

I was speaking for myself and how I feel I have had not yet had the chance to fully grieve diagnosis. I was only diagnosed 16 mos ago and it makes sense that I'm not where others are at in their process. I agree Michael you are very clear about what lies ahead. Thank you for all you do!