Can you mourn for someone with AD while they're still alive? Everytime my DH loses ground and the disease progresses, I feel like I'm in mourning with each stage, grieving the part of him that is lost to AD. It's cruel to have to lose him bit by bit. If he died suddenly then I could grieve all at once, but the prolonging of this hard and unkind disease is heartwrenching. I wonder sometimes what he or I have done in life to deserve this in that I believe in karma, yet I realize there are the physical aspects to consider. But with each stage I cry, and say goodbye to the portion of him going. Anyone have any ideas how to accept that he isn't himself wholly, on an emotional level?
Shadowbaby, you have hit on something I have often thought about too. Yes, I think we do mourn for the bits and pieces of the person that is gone. It is called the long goodbye, you know. I don't have any ideas of how to accept this. I just try to deal with it as it comes. But as he declines, the sadness increases.
Vickie, thanks for understanding. I'm glad to know someone else gets it. The long goodbye really kinds of says it all. Was that a book title? Seems like I've heard of that phrase before. If it's a book title or subject please let me know because I'd like to read more about it.
There was a movie (1973) with that title; and also a song-lyric - neither have anything to do with AD.
However, I have heard that phrase used in connection with AD and I couldn't agree more. From the moment of DX to the end - it is, indeed, the long goodbye.
Almost 2 years ago, I wrote a blog about mourning the loss of our relationship. Copy and paste this link - http://www.thealzheimerspouse.com/mourning.htm If that doesn't work, log onto the home page - www.thealzheimerspouse.com - click on "previous blogs", and scroll to #12.
I think you will find the blog interesting and helpful.
The Long Goodbye is a book by Patti Davis about losing her father, Ronald Reagan, to AD. You can copy and paste this link for information on the book - http://astore.amazon.com/wwwthealzheim-20/detail/0452286875
I was remembering a thread in which I used the term "living bereavement" so I looked it up and ttt'd it. It is called THE EMOTIONAL DIVORCE. I did that before reading all of this thread, anyway, blogs #87 and #88 are good reads.
I think this goes along with Caregivers dimentia!! I have posted several times about my concern that I have lost most of my own memories about who my LW was and what she was like. I can't remember her smile, our conversations, very little of our amorous times, and almost everything. It is like they have died. But several of our friends on this blog have said that after the physical death of LO, that the memories come back. This really seems related to the "slow death" you are talking about here. I love the Carol I have now but sure wish I could remember more about my Carol of 49 yrs of marriage.
As you know, I have found my husband in a nursing home in FL. I've been able to talk to him over the past few days. They've been treating him for various aillments and he seems stronger, more able to manage. I still have the desire to bring him home even to another nursing center, just to be around him every day. I have been in mourning for his loss of every aspect that made me love him in the first place. It was a rocky marriage for 26 years. Seems like in the past several years, as my frustration with him grew, all I could remember were the bad times. Now, I find myself able to remember the good times we had, things we did, the life I miss. It is bittersweet. I know I'll never have my lover back. I know it will only get worse. Lots of people here have agreed (and my 'wise mind' agrees, too) that I should leave him where he is and let the divorce go through, save myself all lthe heartbreak that is coming ..... referring to the next stages of the disease and the care he will need. After all the thought I've gone through regarding his eventual homecoming (hopefully while he still remembers me) I believe that my efforts are a form of grieving. Does that make any sense? I feel like there is nothing else I can do for "us" but bear a final burden for his sake. Lord knows what I've gone through with his dysfunctional family. I know that when this is all over, I will have no question in my mind that I've done everything I possibly could have done.
I understand exactly how you feel, I have been going through some of the same issues with my DW. It was important to me to know that I had done everything posible for her. We took her out of stroke rehab and brought her home a week ago to see if we could take care of her at home. It has beccome evident this past week that we are unable to provide the care she needs. She doesn't understand how great a danger she is to herself. She has fallen at least once every day this week. So we will begin looking for a place for her. Her daughter and I both agree that the entire squad of us cannot take care of her. When she falls she is unable to get herself up again, it takes two of us to get her up off of the floor. We don't want her in this kind of danger, but at least we tried.
Shadowbaby, I understand exactly what you mean. It IS a mourning; and we caregivers are going through the grieving process each day--all the stages--at different times, and on different days. I think the only stage I cannot go through is the acceptance stage, don't know if I ever will. I feel so sorry for my husband--thank God sometime for the anosognosia, because it would be a lot worse if he understood and knew what was happening. I guess that is why so many of us visit this site--it is comforting to know each of us is not alone.
Shadowbaby, I believe you have described our emotions to a T. The reason we are all so "crazy" is because this grieving process goes on day after day after day without closure. We say goodbye everytime they loose ground and become someone we no longer know. We don't know them any more yet we continue to grieve none the less. My dh has been 8 years suffering but today, he still has glimpses of "knowing" even when I don't think he is "here". Bille, I was astounded to read your blog when you said that you could not remember her smile, conversations, amorous times and just about everything. I thought I was loosing MY mind because I cannot honestly remember the details of our marriage. I cannot even remember his voice. I pray that what you say is correct. Maybe with his loss, I can then truly remember the wonderful life we had together. Why does this happen? My family members often say do you remember...? I never do but they can remember so much of my life. I thought maybe this is a way for our brains to cope with the overwhelming loss. Ya think?
Kathryn I think you're right about our brains shutting down to cope with the lingering loss. I hope the time will come when we can all remember the better times.
Shadowbaby, I mourned the loss of my husband over the last two years. He's no longer in the body that I'm taking care of. It is inhabited by a self-centered, spoiled two year old that insists on his way, wants to watch the movies he wants to watch, eats when he wants to eat, chews his capsules, drinks your glass of tea instead of his, wants you to go to bed when he wants to go to bed, wants to hold something in his hand at all times, and has to be behind you to see what you are doing if you leave the den. None of these things would my husband have EVER done! He was the most considerate, thoughtful man who didn't care what we did as long as we did it together. The two year old still loves hugs and kisses from me, but he doesn't remember me as his wife.
I am still grieving, because I know he is getting worse.
I wish we knew how long until they are bedridden, and how long from bedridden until they pass away. I know that every case is different, and there are no timelines. Here at Joan's place we've seen it take 10 years of nh; 5 years of nh and 3 years back at home bedridden; three weeks from walking and talking to death itself - and everything in between. Knowing that we can't do anything to help them except love them and care for them as they decline is the hardest part for me.
It is a long grieving process and with each loss, we grieve again. I need to know that I have done the best I could for my husband to ensure that he gets the right care at the right time. As he has progressed, knowing I have done the best I can for him has helped me through the next stage.
For me, the stage he is now (7 with little to no talking, no walking and in his own world most of the time), the right care means being strong enough to let him go and not try to keep him here. He does not have a life now by his own definition and all I can do is try and let it end with as much dignity for him as possible.
Yes, I feel if anyone can relate here, it is a feeling we all share through this disease! We putter on day by day doing what we have to do, but when someone actually asks you can he do this or that? you come to a fast reality of just how much you have lost. We just celebrated our anniversary with him having so much aggression and threatning to kill himself, he was admitted to the hospital on our anniversary. As you always tend to look back particularly when holidays or important things are involved, you cant help but grieve along for the losses. It is just SO hard for anyone else to concieve at all the grief you feel, but here we have that as a common ground where we can empathize not just sympathize! When he was admitted to the hospital one of the techs told me, we are taking this not only day by day, not just hour to hour, but ten minutes to ten minutes and that SO hit home with the changes I see lately. So keep that in mind, it is smaller increments we tread on with but I think too they start to become emotional disconnected as they get further into the stages. That is painful also to come to grips with, but part of the process to help better you , I guess , for the loss.
shadowbaby, I have told my friends and family many times that I feel as though I am in the constant stage of going to a funeral that never ends, that is exactly how I feel. I do feel that if we could remember the wonderful gentle ways and love that once was there for us as our husband we would not be able to cope with now, and then in many ways we do remember those times just not the way we think we should, otherwise we could not be the caregivers that we are, do I make any sense??
I just read this Buddhist quote that helped me feel better today. Thought I would pass it on. Having a son suffering with schizophrenia is a similar grieving process like all of you are describing.
"Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for the grief, for relief, for misery, for joy." peace to all of you TD
I grieve for the parts of him that are gone. So far, he still connects with me on some level. There are times when he looks at me with such love and trust in his eyes I feel like I have been punched in the gut. He lights up for a few seconds when I walk up to him. Those are moments to be treasured as I have no clue when or if they will ever be lost and not come again.
We all have choices even with the horrible things that are happening. We can choose to focus on what was lost or we can learn to take joy in what they can still do. I try to take joy in what he can still do. He is in a chair now but can move his feet to maneuver it around. I am amazed at what he can get himself into but find it even more amazing that if left by himself, he will figure out how to get himself out. If I put his arms around me, he still knows how to squeeze me. He will often go 'mmmmmmmmmmmmmmmmmmm' when he does that. There are times when he greets me by reaching out to touch my face.
So many have said it, it is worth saying again. This disease will take him to his grave, I choose not to join him in it at this time.
To Mary, Jane and Therrja, and everyone else who posted. Thank you! You've given me much needed support and validation that is invaluable. This site is so comforting-just to know there are folks out there who feel like I do, and will give me comfort and understanding throught this process. At least I know I'm not crazy and not alone in this. Shadowbaby
if its possible to continue to survive even though your heart is broken, i guess grieving for a living spouse is also very real. many you have summed it up perfectly. an ongoing funeral, the never ending grief, depressive states, and sadness over each of daily small losses. the unforgiving facts that the disease is a continuing spiral down into the abyss and dragging us behind because we cant disconnect the bonds-because there is still a 'breathing' body attached to a dead future. sometimes i believe the mourning is more for ourselves as we see our lives dwindling away without recourse day by day and no timeline in sight. the inability to move forward with living detained by the dying. its a catch 22 that we have no control over til its over-divvi
Wow, this post nailed it - it definitely is the long goodbye and everyday you are grieving some loss in your loved one, no matter how small (or big). I was thinking how when someone has cancer it seems like friends/family really "rally" around the person with cancer and their families... with Alzheimer's not so much. It's like you say they have Alzheimer's and people run the other way. Plus, I think it is hard for friends/family members who are not around them everyday to understand that something is wrong... "well, he LOOKS fine to me!" is what I get a lot. Yes, he LOOKS fantastic, but he can't set the clock to the correct time, forgets to eat lunch and can't remember what you said 2 minutes from now.
You really want to let your friends know what is going on with you - but I start feeling like "Debbie Downer" all the time. How do you tell people you have to watch the man who was your best friend become a complete stranger? How do you wake up in the morning with a cheerful attitude when you know it is only going to get worse over time and dealing with today is bad enough? I still get the impression that people think I am just "making" up the things my DH does because he still looks fine. Does it get easier when they start looking like there is something obviously wrong? I know that is awful to say!! I wanted to kill the checker at Walmart the other day because of some things she said to my DH (jokingly) because he couldn't figure out how to pick up the grocery bags and put them in the cart....
Boy, these last 2 posts really nailed it. Except that my DW does show it phsically due to the brain damage. People think she is my mother, and small kids stare at her in the wheelshair at Target, etc.
WalMart clerks earn no respect from me.....like the greeter who confronted my dw when she returned a coffee pot..."This is the third time you returned a coffee pot....can't you make up your mind?? Well, my dw burst into tears, and ran off into the parking lot....when I could not find her, I drove home and found out that she had walked home....luckily she found her way. I am waiting for the opportunity to punch that "greeter" in the nose... People can be sympathetic if you have cancer, leprosy, but mention ad and their sensitivity vanishes....looks like it really is very contagious, and it affects people instantly.......
Nobody is posting - must be watching Dateline's Your Cheating Heart. Along those same lines and this thread, I just want to say when it comes time to think about 'dating', I start thinking about the same old problem I had when I was young and single: rejection. I guess its the male ego thing, but gosh, do I hate rejection. Not so much the trying to get that first date, but the third or fourth, etc. That is why I was so happy to find my soul-mate. Now if I don't want to be alone the rest of my miserable life, I'm going to have to go through all that junk again.
Stuntgirl and all others who have had sometimes rocky marriages. I can definitelh relate tothis. Problems started shortly after our five year old son died. I blamed it on the death which he did not accept well or cope with, A few years later I began to see behavior I had not seen ever in our relationship. It about killed everything that was good in the marriage. I blamed it on the death of our child. It was a rough 15 years and many times I seriously considered divorcing him. Hated to do it for a multitude of reasons including our ages, stages in life (retired), still had 2 young children to riase and so I stuck it out. Mostly resentful but determine and we had had just a fantastic relationship earlier. More and more the resentment took over but still I stuck it out. It wasn't until things got really bazare and I could reelate them to alz that I took a seond took. I am convinced that some of the hell he put me thru was very early alz without a diagnosis. I moved from there into caregiver, not always a loving caretgiver, but I did my job to the best of my ability. In the past 5 months I am finally remembering the good times, and they were good times I had been attracted to him when I was only 22 to his 38, the spark was there. We settled for friends as he was married (unhappily). Finally after 8 years I started to see him as something more than a friend. It was like a fire - think johhnhy cash song, we got married in a fever - but even that took 3 years to come about. We worked hard at blending his family, my family and then our own. Sometimes it worked well, sometimes not, but we were committed to the approach. These were wonderful times. Happy in our jobs, happy with each other and happy with our new age family. With thr six kids living we have a span from 29 to 53, Today I am finally beginning to remember those wonderful early years and if I breakdown now and cry it will be because of remembering those times. Right now I am still dry eyed as I have been since he died in december, If that makes me a monstr nd unfeeling so be it. Everybody does this differeny\t Sleeping meds are kicking in gotta go I love each and everyone of you
Texas Joe...yeah rejection is a tough one to handle..Wish I could find those one line pick up phrases that work with women, but the reality is that the number of "qualified" women are few and far between. I have been watching the women I see, and mentally rating them to see if I could ever date them. So far, there are over 500 that I could not date under any circumstances, 5 that are possibilities, and none that I could ever think of as a "soul mate". Most have severe baggage, medical issues, and financial problems, and it would be very difficult to accept them as they are. I too fear the rejection issue, but mostly I fear the time it takes to get to know someone. In high school, it was easier since you only had to cover a few years, and the future was optimistic. Now, I have 30-40 years of experiences and events, and have to learn how a person lived her life, and how she looks to the future. The future is now a lot shorter now, and there cannot be anymore "30 year mortgages"...so yes Texas Joe, trying to find the courage of starting over again seems hopelessly discouraging, and I am really starting to believe that "Nice guys finish last"...seems like most women love the "bad boy" image, and the prettiest and nicest women usually end up with some creep, who abuses them, drinks, cheats, and treats them poorly. I have always had the reputation for being a "nice guy", which to me indicated that women were not attracted to me, and that they only wanted to be my friend. I have yet to attempt getting into the playing field, and I am finding that it will be very difficult to find someone who truly loves me, and not my money, talents, or personnal possessions.
Frank and Joe---Why don't you try looking for a "friend" instead of a "date". Instead of looking at every woman as a potential mate, just look for someone with whom you can have some interesting conversation or eat a meal with. Once you get to know them, things may proceed further, but if not, at least you have acquired another friend to talk to.
So far as rejection goes, it's easier to reject someone who's looking for a date than it is to reject someone who just wants to be a friend.
I have lots of friends....one in particular who is very understanding...but she is only a friend, and I doubt we will progress any further than that...I think the chemistry is missing...and yes, we have conversations and meals, but it is nothing more than a friendship. And, I take things very slow, and not even sure I want another relationship...I fear that caregiving has drained me, and I have little to offer other than "excessive baggage...I even fear a "one night stand", because I think it would leave me feeling guilty and selfish....
TheQueen....you could have written my OWN story, except that my husband and I were 26 years apart! I stayed through it all. Thought I was a good example in a throwo-away world....work things out, don't walk out. Our children (his, mine and ours) range in ages from 24 to 47 and really resent the fact that I stayed in a bad marriage. Like you, I now believe that some of his strange behavior earlier on was the first manifestation of the AD. Phranque and the other guys.....Susan L is right. NO PICK UP LINES. Sweet, thoughtful, noncondescending would win me over everytime. Also...NO CHASING. Small steps, take your time. Make us a friend, first, one that can trust you. (As for me, I'll be doing a background check, too...can't be too careful.) One day, I want the full life to the end that I had pictured and isn't going to happen with my current mate. Also, hey, where would I go to meet anyone, anyway? I don't hang out in bars, don't live near anybody. You guys would have to make a road trip to see me. You don't meet anyone in line at a matinee or alone at a table at Applebees. Maybe eHarmony?????
TexasJoe and phranque, could y’all maybe be tending to place the cart before the horse in seeking to “qualify” women as potential life partners and shortcutting the idea of possibly enjoyable courtships? Courting and dating can be fun too – it certainly beats just moping around alone. And then let things go where they may.
I’m reminded of the story about the stable boy who was infatuated with the princess whose horse he groomed in preparation for her ride each day. Finally one day he sought the advice of an older stable hand, who ventured that a stable boy was probably invisible to the princess, and that he should try doing something to get her to notice him and then hopefully go on from there. So that night the stable boy could hardly sleep – dreaming up scenarios for getting himself noticed by the princess and how the day might proceed thereafter. Before dawn he had it all figured out – he’d plait a colorful ribbon into her horse’s tail and position the horse so the princess would be bound to notice it as she prepared to go for her morning ride.
Then as he held the horse for her to mount, she’d ask, “What’s that?”
And he would reply, “It’s a beautiful ribbon – I wanted the horse to look especially beautiful for your highness because you’re so beautiful today.”
And then she would say, “Well thank you very much for the compliment – would you like to accompany me on my ride today?”
And he’d say, “Yes, my princess, I’d be delighted to accompany you, and I’ve prepared a basket of food in case you should get hungry on your ride.”
Then off they’d go, and by and by as they approached a secluded, sun-dappled mossy glen in the forest the princess would say, “Oh, let’s stop here – this looks like a delightful spot for a picnic.”
They’d dismount and the stable boy would spread a blanket on the ground for them to sit on and open the picnic basket, revealing all manner of delicious fruits and cheeses and wine, which they would begin feeding to one another.
One thing would lead to another, and after awhile the princess would comment that she was drowsy, and that perhaps they should lie down for a bit before resuming their ride.
And he’d compliment her again on her great beauty and ask if he might dare to ask for a kiss. And then nature would take its course and before long they’d be making passionate love!
So the stable boy was up before dawn, plaiting the ribbon into the horse’s tail, and when the princess approached and asked, “What’s that?” he quickly replied, “It’s a ribbon in the horse’s tail – let’s screw!”
Some things you probably shouldn’t try to shortcut -- advice from an 81 year old who still loves the sight and scent and touch of a beautiful woman who enjoys being a woman!
OMG gourdchipper, that's the funniest thing I've heard in a long time! Phranque, we are on the same page. I do believe it would be better to start as friends, because rejection might be less of a problem, but we don't have the time or energy left to continue such relationships for years until hopefully friends become lovers. Then what, Viagra?? Also, what happens when nothing develops? Why do the jerks get the girls and we nice guys are told "you're a great guy, but.......". Anyway it is very discouraging thinking about going through all that stuff again. Why can't the women chase us, like they do the bad boys. I'd like to see that happen just once.
If nothing develops??? Friendship can never be bad...it is better to have loved and lost then to never have loved at all. I guess I am too "old fashioned" and could never tie a ribbon to a horse's tail and say lets screw..I would be going on the picnic, and then would probably not dare to ask for a kiss... Even if women were chasing you, I am sure you would run the other way..at least I would...never did like being chased. Viagra?? perhaps with the right person, you would find that it is not necessary... I think the right woman will accept your small advances gradually, until it leads further and further. Sometimes love surprises you... I think if you treat a woman with respect, dignity and integrity, that will win out every time. Even if it turns into just a friendship, you are still rich enough to have earned that friendship. Texas Joe, you may feel like I do...when a woman says she wants to be friends, you automatically assume that she is telling you to keep your hands and mouth off her....just friends, not friends with benefits...let alone lovers.. Gourdchipper...nice story...I agree...no cart before the horse....but then again, the horse and buggy days are pretty much over...lots of dragonladies out there, and I do not want any pies.........
Gourdchipper, You know of what your'e speaking. You are a man of wisdom to be sure! Women don't even know if they even like a guy for quite a while, and we tend to want to see if a man is trustworthy before we can go any further and let our feelings enter into the equation. We want to get to know you first, that's just how we do it. And yes, guys don't like the dreaded F word (friend) but try to turn things the other way around and imagine how you would feel in that person's position. Shadowbaby