I am doing fine. I have come to the solid conclusion that my father was a brave and compassionate man who did the right thing and I can now live with that for the rest of my life.
I am of course as sad and as tearful as you would expect. As the other *'s around here have reminded me, it will take a while to get used to their being gone. The house did get 50% larger and there seems to be more echos around here. I do wonder who will EVER eat all the food that is now in the house. (I brought all mom/dad's food over to my place)
I spent today moving stuff outta mom/dad's place. (beds & furniture) It is actually handy right now to have a big (mostly unfurnished) place of my own to put things. I suspect that the physical activity of lifting and carrying was a good thing and will also help me sleep better (although that has not really been a problem)
I have been having some unusual thoughts in my head that only an AD spouse could understand. The typical AD death is a hospice 'bed death' and has been well described here. Because Rita was still ambulatory at the time of her death and because I could still care for her and I did not have to face the placement decision, I kinda feel like I did not go far enough with her.
Yeah its real strange, I feel like I got off easy. Kinda like I took a short cut and did not drive all the way to the end of the road with Rita . . . . I get the feeling that I was 'cheated' out of the entire AD experience.
I have read about the final experiences of others here and sheesh who would WANT to go through that if you did not have to, but I now do have a little 'survivor's guilt' to work out because my finish line came up way sooner than I ever thought it would. I had prepared myself for the long painful ending.
Strange to feel this way, but with my ending being so different from others I felt I would share it with you all. Thanks for thinking about me. Jim
What about considering a road trip or vacation if you can. Seeing something different and being away from the two houses for even some kind of short break might let in some fresh air. If not now, maybe something to think about.
Jim, I pray all the time that my husband's journey ends before AD ends it. Unfortunately he is healthy otherwise, so not that likely.
Please try not to feel guilty because you did not have to go the total journey you think you should have. You did go the total journey that you were meant to do. Try to think of the positive - you didn't have to go to the worst and neither did Rita.
The cause of my wife's death will be gun shot wound to the head (no surprise) as a result of 'homicide'. However, learning that brought on a cry filled drive all the way home. . . . .
Why? It means that she did NOT die from Alzheimer's Disease!!! All those years of watching her intellect and personality drain from her body was all for not.
The doctors did not do a microscopic examination for the plaques and tangles. There is (and will be) no official record of what I believe ACTUALLY killed her. Her medical records all reflect only a 'presumed' diagnosis.
As I sit here typing this I am experiencing only the normal memories of her from her pre-AD years (as discussed above) and it seems like perhaps it was all just a bad dream(?) I am left with nothing to hang my hat on for all that I have lost.
My father did not get a exam for AD pathology either. So where is the record of why he did what he did?
This experience also has me thinking about all the other AD people who die non-AD deaths. The wanderers who perish from exhaustion, the cold or being hit by a car. It seems they are not really AD deaths either. . . . ?
Even if we know they are, they are never counted as an AD death. I wonder what the REAL number of AD deaths is?
Jim I can't begin to understand all you have been through or the reasons for what you are feeling. You have said you truly believe your father did this as a gift to you (trying to figure out how to word this...) I guess my thinking is if that is what you firmly believe, why would you "waste" that gift torturing yourself with these thoughts?
Does it matter so much what the death certificate says? Can you not just know in your heart the real reasons leading up to this tragedy? Would it be less difficult if it was say a car accident that claimed her life?
I am concerned about you Jim. I wonder if you weren't too quick to push the trauma away. These are very real, complicated and conflicting emotions you are experiencing.
I lost my Dad to suicide, he took no other lives with him, and that alone nearly destroyed me. It is not the same I know...You have knowledge of why, and you believe it to be a gift, a mercy killing. That has to bring great peace. But still Jim, so very tragic.....
Well said, Nikki. Jim, I can't begin to comprehend the enormity of your loss. I, too, am concerned about you. I don't know anybody who has lost the 3 most important people in their lives at one fell swoop. This is just beyond anything anybody should have to endure. I hope you are talking to someone or at least contemplating talking to someone.
Jim, My mother had ALZ but she also had pace maker so I think she kept on " ticking" longer than she might have otherwise done. She did not have a post mortem of her brain....but they did state ( in TX) based on her neurologiast's DX dementia. Her younger brother, 11 years her junior, died a year later and a post mortem was done on him...and he had it bad..The thing is they both had similar temperments but the initial presentation of symptoms were somewhat different...he lost his vocabulary and it was thought at first strokes. PET said otherwise.
When I reported my mother's death to her doctors, they kept asking what the primary cause of death was,,it was not ALZ they said. I said she did not have hx of stroke, no cancer etc...her brain finally just stopped working and she stopped breathing with no fanfare...one last breath and that was all, no other "drama"....maybe getting upset with them telling me how stupid I was got their attention. I don't know...
I know you care and YOU KNOW what happened with your father...you knew him better than any doctors and the same with Rita...As long as YOU know the details it doesn't matter what the coroner or other professionals want to say about their conditions. And certainly we here at Joan's Place, know too...and we support you in every way.
I, along with all the others, will tell you not to feel cheated that you didn't " go the distance" as you surely did. It was not yours to control just the same as if I lose my DH to stroke..with his complicated medical history it could be any of the other causes but that does not mean he didn't have ALZ. He does as does his sister.
Be at peace knowing you did all you could for your Rita...and she knows this too. She is at peace and now it is time for you to sort out how you feel, take the time you need and know we are with you.
Your loss was heavy and I can't imagine what you are going through...we all send our hugs and love to you.
Please don't waste your time worrying about what the coroner/ME called labeled "cause of death". Your precious wife did indirectly die from alzheimers otherwise your dad would not have elected these actions (cause and effect action). Hold on to your "gift" tightly because only you know the facts and circumstances. As educated as the coroner/ME they are not looking into the emotional aspects of death, but rather only the physical aspects of death.
Jim, I am worried about you. I understand that you have this board to use day and night. You can come here and safety share your innermost thoughts however, in addition you need to look into a "Grief Share" program. Many various churches have these programs open to the public so you don't have to be a "member".
Others on this board have been saddened and angered that the cause of death for their loved one was listed as other than Alzheimer's. I am glad that the doctor who pronounced Gord seemed to have some experience with Alzheimer's. As he sat with my son and I, he told us that he was putting the cause of death as Alzheimer's and aspirational pneumonia. I was glad though I really don't know why. I guess it covers some need we have to name the monster which denied a good life to our loved ones long before their actual life was over.
Dear Jim, our grief can be triggered by words, or events, and comes out in tears. I have a friend who tells me that tears are a gift from God and that they heal. I find that to be true for me. I can understand your frustration that this enemy of Alzheimer's was not named. And I know the complete frustration of having your heroic efforts end up as seeming to be of no importance, or consequence. In the large picture, your love and care of your wife are what makes the universe go round its moral axis. We know that. You know that. This will heal. Prayers and love from me to you.
Jim, don't fell cheated cause you did not have the long road of AD with Rita you felt you should have. I think what you are dealing with - the loss of three lives directly and indirectly related to dementia is far more emotionally and physically draining than having gone what you felt was to the end of the AD journey.
Re: Listing the cause of death as Alzheimer's. I understand Jim's feelings, ... there is no denying that Alzheimer's Dementia was at play here. When we look to our government for special funding for Alzheimer's Research, they look at recorded statistics to see what an impact Alzheimer's Disease has on 'cause of death'. If everyone who died with Alzheimer's was listed as such, perhaps our elected delegates would realize how wide spread it is.. and that is is not simply a "loss of memory disease".
Jim, I pray for you and hope you do find a person who can listen to you sound off. I understand Doctors and Nurses put their on health care on the back burners., because you are so accustomed to handling everything yourselves. I didn't think I needed to let it all out, until I was talked into seeing a psychologist. What a difference it has made in my life... and all I can say now is I wished I had begun to see her earlier.
Nancy B*, I continue to go to see a stress counsellor once a month. The unbelievable trauma a caregiver undergoes needs every possible healing process available. I think it was Wolf who said, under another topic heading, that we cannot help but be changed by what happened.
I was listening to a speaker from the U of MN at a meeting last night and, although I probably won't quote him word for word, he said that statistics show that caregivers need 3 years to physically recover from the stress of caregiving - and that doesn't address the emotional and mental stress we are under. I think I will also seek out a counselor, cause my feelings are so stuffed, I feel numb. I believe that if I don't work this stuff out, I'll have these feelings for the rest of my life and never be able to move on.
Yup Nancy B*, You got it. It is a numbers game and the bigger numbers always get the most attention and funding. It is a case of 'Disease Politics' and the Alzheimer's organizations are not as savvy or as powerful as the Cancer groups.
I am not dwelling on this as an expression of unresolved grief. The reason I care about all this is that I have a very strong sense of history and I know that history is not about what really happened, but it is about that way the events were remembered and recorded.
I still very much appreciate the gift my dad gave me. In exchange, I feel a need to protect his reputation and memory from the vultures of history. Jim
and Jim..I get YOU. I know what you are saying... and I understand completely. Most, if not ALL, of us on this website understand. Let us all remember to get the doctor/coroner or whoever lists AD as one of the contributing causes of death. We need to make NOISE... make sure each and every one of our LO's count in the statistics as they relate to Alzheimer's Disease. It's really that important.