I can't believe, as spouses of Alz victims, most of us have three grieving processes to endure.
First was when I realized my dh was no longer the man I married. I just grieved as if he had died before I could accept it.
Second is when I placed him a month ago. That hurt so much more than the first. I don't know how long this will last but I know I am in for the duration.
Third will be the final. I know it will just decimate me.
Spousal caregivers of Alz victims have to be the strongest people on earth to go through the process of grieving three times. There is nothing on earth to make it easier. We will come out of this abyss eventually. Just take one day at a time.
Shirley, I actually think there are more than 3. Every time our LO takes a steep decline and loses significant abilities. I'm not a Debbie downer but when my husband lost the ability to do everyday tasks, it always hit me hard and I was grieving for those losses. He's now in early stage 7, still at home with a 24/7 aide but has lost most of his speech and is becoming doubly incontinent. It is so very, very hard to witness. But I am grateful he's still home with me.
Amen to that Joan. Another spouse on this website once told me that at each stage you look back to the one before and wish it could come back. It was so true. The previous stage seemed so much easier in hindsight than the one you were in.
Shirley in retrospect three would have been manageable. The journey ahead will be a equally challenging as we attempt to discover who we are? What will the new us be after devoting so many years of caregiving? Can we heal? NO, never, but some will cope with our losses better than others. Personally without a woulda, coulda, shoulda, on my conscience and nary a wish un fore filled In our former bucket list, I'm giving myself permission to smile occasionally. Joang you offer such wise words. Unless you've been there 24x7 for years there is no way you can comprehend the experience and the impact that has been embedded in our psyche's I think we can all adapt the old Marine poem - When we get to heaven. " One more Alzheimer's caregiver reporting, I've served my time in Hell"
At the moment feeling quite overwhelmed as I have spent the last ten years grieving; starting with a: caring for my wife's mother having Early Onset and passing in a NH. b.MY wife being dx's with Early Onset,(Now 2 daughters in terror) c. wife dx'd with stage iv bowel cancer, declining chemo, preferring to die sooner of cancer when told she less than 6 mos to live post op. . d. after three years of remission cancer returned with a vengeance several months ago. e. final three months suffering horribly despite all the efforts of Hospice care both at home with around the clock nurses, in two different inpatient Hospice unit all trying to control a horrific syndrome, "Terminal Restlessness" and failing totally f. placement in skilled NH only viable alternative after Hospice Crisis Care Nurses were overwhelmed trying to keep up with DW incessant pacing during their 12 hrs shifts. G.DW's Passing five days after placemen, the only moments of peace, the result of chemically induced coma which precipitated her death. I've had enough of a life filled with nothing but stress and grief, I'm going to try and find me. A Hospice MD with whom I became friendly has set me up for grief therapy with a counselor who specialized in PTSD starting on Monday and am I ready! I agree 100% with Jang... in retrospect the earlier stages were a relative piece of cake. .
Yes, I thought by the time my DH passed away, I would be grieved out. But it has been so hard. It's almost like I was in a dream for the time he was sick... just getting through each day and now the pain is really real. Ouch. It hurts.
In my situation I think there are infinite stages of Alzheimer's grieving . In my particularly case the grieving began prior to the diagnosis when I was living with a man, my husband, who was slowly becoming a stranger. My marriage had slipped away and it was no longer. I was grieving for the loss of my marriage, partner, and former lover and friend. Then "official" diagnosis...more grief, fear, anger, and uncertainly. It was a daily grief mixed with unanswered questions as to how, what and why's. Daily grieving...daily struggling...and daily unanswered questions as I was wandering in a maze of caretaker confusion.
The medical community states there are 7 stages to Alzheimer's disease. Some doctors simplify the stage to 3....mild (MCI), moderate and severe. Whatever or however the caretaker and family looks at it the results are the same. We step into the mild cognitive impairment learning to accept, to the middle stage of learning to cope with their deficits and behavioral problems, to the final stage of death. Deep within each stages lays numerous uncountable stages of grief.
This kind of grief we are experiencing is named "ambiguous grief" because while a death has not occurred, the person and relationship has changed significantly enough to seem like a death. Ambiguous grief can also lead to "disenfranchised grief" where caregivers and especially those around them do not acknowledge that grief is occurring.
Here is an excellent link explaining this: http://www.alzheimer.ca/~/media/Files/national/For-HCP/for_hcp_ambiguous_loss_e.ashx
It is definitely worth reading because it validates our emotions as caregivers and the contradictory feelings we experience. I would suggest that if a caregiver were seeking counseling, this might be a concept that the counselor ought to understand in order to be effective.
BTW - Ambiguous grief was originally described for MIA families. A recent article in the NYT regarding the WWII losses on Tarawa and trying to recover remains mentions ambiguous loss for the families of these thousands of lost marines and the original work/paper done by Pauline Boss.
It will be five years in February that Claude passed on. At the time I thought I was doing my grieving as each stage passed over the long seven years, and I wouldn't be hit by it all at once like some of you have. With the help of my kids and a wonderful hospice group, I was able to keep him at home until the end. I was talking to him and holding his hand when he took his last breath. I thought I had coped well with everything.
About two months ago, my best friend's husband, who had Parkinson's for 19 years, fell, dislocated a shoulder he had previously had replaced. He had a cardiac arrest and went into a coma which he never came out of. I stayed with her nearly all the time thru four weeks of intensive care, two weeks of acute care and a week of a nursing home. She and her son had gone out for a walk and I was in with him when he passed. Grief for her and all the years of bottled up of my own grief hit me at that point. I have an appointment this week with a grief counselor and I talked Gena into meeting with a counselor also.
redbud - I don't really think about how long I have been here until those like you who lost their spouse not long after I joined post. I joined the first of January and I think you were one of the first to loose their spouse. Makes me realize how long it has been and how many have lost their spouse since earlier in my husband's journey. Glad you are still around.
What humans do is simplify. It's hard wired in our brains. We try to solve.
There is a critical element in human physiology though which everyone knows and few take into account and you can judge for yourself whether it's important.
We move in multiple cycles. All women know cycles. There are many of them. Even the natural Dopamine production in our bodies cycles and that effects emotional response. There are many such things.
Anyone can judge this because we are strong some days and weak others. We remember things that hurt us yet at other times we can deal with it. What one day seemed hard another day seems easy and vice versa and so on.
Because there are many things happening we would never score the same result on the same test on any other given day. We would likely react differently to exactly the same situation on different days or at different times or after or before certain events.
We might go to a pychiatrist and it might take them weeks to get us comfortable enough to just talk. That we can understand. But that it's exactly the same issue talking to ourselves isn't as easy to conceive. I know many people that get uncomfortable looking at a certain place within ourselves. Our age and what it implies is one example.
Did you know that seven people out of ten are much harder on themselves than people they hate? I made that number up but it's not far off. People are almost completely useless at genuinely liking themselves. I don't mean snuggling up into a blanket and feeling pretty good at the moment or telling yourself once again that you're doing all right.
You are probably.
But I can tell you Shirley's future and Joan's future and any of our futures.
Walk out of this valley or stay in it.
Go and read the Widow's thread. Someone tallied the ages of the caregivers. I tallied how many sound like they're getting on and how many languish. You won't like the results although more than half sound ok.
I had a serious insight recently into just how much I hate, don't want, and won't accept this either to her or to me or to us. I felt the revulsion in my bones that it doesn't matter how I feel because I'm STUCK here.
There is only one road and it is through the grief and when it has us on our knees one day I wouldn't worry about it because it's going to again so get used to being down here.
But when you strip all the BS away I always come to the same bare bones. We either want to be happy enough again or we don't and if we do then get off your duff and start caring about yourself.
See? This plug goes in there. IF we want to be (fill in your own description) again, THEN we have to work at that. That means doing things for ourselves because if you can think of another way to feel alright again deep inside I don't know about it.
If you don't think you deserve such help after what you've done then maybe a psychiatrist actually would be helpful. I can tell you point blank you deserve real help. Look around. Who do you see that can help you? Look in the mirror.
We can't avoid the grief and the rest. I don't think we should try. Our own systems will help us 'disenfranchise' what is too hard right now. But that's all 'enduring' and we're very good at that believe it or not. It's being happy where humans are imbeciles. Even normal people can't find their way out of a wet paper bag on that. Study that and come back and comment because I'll be here.
Look right into the eye of one thing that has been bugging you and tell it to flock off. Do it until you can feel it like an actor rehearsing until you can say it and mean it. Watch what happens. If you can't today, do it tomorrow because you change like the weather. The thing is little victories cumulate.
Every single frigging thing that doesn't bother you right now is a little victory. Every tiny little thing you like from a bar of soap, cup of coffee, your own car, the newspaper, is like bits of gold dust lying around being trampled. Every weird thing not actually strangling you right now as you read this is a blessing because it gives you time to get your gun. Do you have bleeding hemmoroids? No? Write it down. If you do have them then change that to scabies.
Learning to help myself heal changed me in good ways. Learning to explain how I am as a weatherman simplified my life. "How are you?" they ask. "Most of the storms are behind me." I answer.
Except my fellow traveller who is on his fifth psychiatrist. There I tell the truth. "Why is it when you're hanging by your fingernails and you fall into the abyss, you end up hanging by your fingernails again?" He smiled.
There's no magic day. I shrug now most of the time. Some days I wail. Mostly sunny with a chance of hard rain. I'll take it.
Wolf, your comments are as always erudite and insightful. You describe yourself as a survivor but you did not always feel that way, did you? Is it just that with the passage of time your spirit couldn't stand being in that dark limbo anymore?
For me, placement was eight weeks ago, so I am still reeling and trying to find my way as that "Curious Kind of Widow." I visit every day because he still recognizes me and needs to feel that he is loved. But it is so painful to see a once vibrant, intelligent man lose his dignity piecemeal. I mentioned before about feeling detached. My mind cannot transition between the ALF visits, the empty, lonely house, and the ridiculous superficiality that seems to be driving the rest of the world. Seriously I feel like I am going crazy or maybe my head is just going to explode. I know too much of this disease and the toll it takes. I don't want to know any of it. My heart has turned hard. I look at some people I know who are greedy, obnoxious, oblivious fools. Why can't this pain be spread around? It seems like these people are teflon coated to this kind of crushing pain, and it makes me angry. But anger is a cancer in itself and the gurus all say to let it go.
And here is where this is all leading: I feel like my life is a runaway train. There is no control - at least by me. You, Wolf, seem to have regained control. But I am careening down the road and just want to put blinders on and call it a bad dream.
It is so, so good that many have posted that one does recover, somewhat. Otherwise I think I might just give up. I cannot stop thinking that I must have done something so terrible in my life to deserve this and I will never be able to make amends. But what? But how? The room needs air and the window won't open. But then there is tomorrow, and maybe. . .just maybe. . . it will be a little better. It hasn't happened yet, but what else is there to hang onto but that little spark of hope. I can always give up tomorrow.
I placed my dh on Oct. 28. I am no better today than I was on Oct. 29. I feel like a misfit; don't seem to have any real desire to do anything but the necessities. DH is in a residential assisted living facility, only 6 residents and he is the only one with a spouse. No one there I can speak to that has any idea what I am going through. DH knows me as being familiar but has lost the sense of marriage. It is like a Twilight Zone. At this point, I don't see things getting any better; just a struggle to hang on. Tomorrow is our 59th wedding anniversary and another reason to ask "when will the hurt and anguish go away?"
My FTLD husband of 48 years placed two weeks ago. He couldn't wait to go, wanted to get away from me. Loves it there, doesn't like for me to visit. Hollers at me. I think the staff sees me as a disruption as that is what happens when I go. Has announced that he will not sit with the men as he likes women. So far he is just infantile and I don't think there are enough hormones for him to be sexual. So I sit by the phone hoping he will call.....it hurts that he has no use for me at all now unless he wants something. He knows who I am, can remember a significant part of our relationship, but I am bad mean mommie to him. He is getting on with his life, but so far I haven't decided who I am anymore. And just because he is in placement doesn't mean that my time is free. Paperwork, calls, ordering his meds and supplies etc. I can relate to what everyone says here. I have looked into getting the book "he's just not that into you" as that seems to fit now. But the quiet is nice.
I feel like you Shirley like a total misfit. He was placed in August and I am not much better. I find that going as much as I was is just too much. He does not seem to know how often I come. He likes it when I come but it is so painful for me. Of course he has no idea what I am going through. There are 3 men on his wing and I did meet the one wife. It did help but her husband can still play games. My husband does not know how to brush his teeth. It is truely a twilight zone. The thing that angers me is everyone asks me how he is and they rarely ask how I am. When my son called the other night and asked me how I am I broke down on the phone and could not finish the conversation.
Two years and nine months after placement I still feel no one understands except you nice friends on Joans web site. I think my DH still knows me when I visit him. I usually take a favorite snack an get him out of his merry walker to sit on sofa. He seems content but has not communicated in years. The staff tells me he is so calm when I am there. The NH is a wandering facility with about half of residence having alz/dementia and the other half are there for extreme obesity, diabetes and strokes. The ones with sound mental faculties are the ones that insist on telling me every little detail about all the things wrong with the NH. I don't want to be mean to the them as a lot of them have no family members that ever visit but they depress the heck out of me. I am with you Pavane55, I do enjoy the quiet after I get back home and get the cobwebs out of my brain. I must say that I always dread going to the NH but I guess I have to. What a life! At age 66 and 48 years of marriage I still can't figure out how to make things better!