I read an article about a woman who was told by the nursing home staff that even though her husband does not know her, her daily visits are keeping him alive. But is that really a good thing?? I've been wanting to discuss this for a while, but didn't, for fear of offending anyone who's spouse has passed away.... Please forgive me if I sound insensitive.... I really don't know what it's like to lose a spouse. All I know is that I'm always thinking of my husband in the long-term care facility - I worry & am concerned about him on a daily basis, which causes me daily stress - the "long goodbye" of Alzheimer is brutal...... I keep on seeing him sitting there alone with that lost look - that picture seems to be burned into my memory.... I can't seem to find peacefulness. It's like a band aid being removed very slowly - I just want to yank it off & be done with it. Right now I feel death would bring a sense of peacefulness & closure - no more "limbo" - I will be free from the stress which Alzheimer has caused. I feel once that "picture" is gone or at least starts to fade from my mind I can move on. But with death I assume comes another set of emotions - so what's worse? Will I be trading one set of emotions for another - equally as sad? I wonder if I will miss our visits, even though I find them somewhat painful. Anyone else feel this way?
The group has had this discussion more than once over the years. I know that I was very conflicted in the last year of DH's life. You are miserable 24/7, exhausted, isolated, depressed, not taking care of your own health, being driven crazy by the aides...etc., etc. But it isn't like it's doing your spouse any good. They just sit there miserable too, or agitated, confused, pooping, falling, asking a million times repetitively to be taken home...and they never, Never, in a million years would have wanted to be like this. Being cared for as if they are an infant, all dignity gone...I still just cringe to remember how awful it all was. And yes, I certainly would wish for him to just die already...but Wait!...No!...but Wait...but all the stress and suffering would be over...he would be at peace...I could get some sleep...yeah, but...He Would Be Dead!...oh, noooooo...that's no good either...Aaaaugh!! Yes, I totally do get it. Crazymaking.
But here's the thing. When he died, and the nice funeral services were over, and I was all by myself picking up the pieces of what life I had left...it was Horrible. Grief, depression, more isolation and loneliness (because, yeah, now you are free to do things--but you don't feel like it)...and still not sleeping well because I was so sad and missing him so much. Would I want him back? No. Not the way he was with Alzheimers. Was I a heartbroken wreck? Yes. Far more than I expected. I mean, we know they're going to die...wouldn't you think we'd be more ready for it? Handle it better? Nope. So anyway, you get through the Alzheimers journey and then you start the recovery and recuperation and rebuilding phase. It took me nearly three years to put a life back together that I'm happy with...and believe me, life is a lot different now than it was with him in the good old days before AD. It took a lot more work than it seems like it should have, but I've found that there is definitely peace, joy, and happiness at the end of that long, dark, miserable tunnel. It just takes a while to get there.
Your question about daily visits keeping them alive - I doubt that. There are times when maybe the healthy spouses will for them to live no matter what, can keep them going longer, but I don't believe it is common. My FIL lived another 9 years after my MIL dropped dead from the stress. The only one that lived nearby was my BIL and I know he only visited once a month when he had his monthly meeting with staff. I think how long they hang on depends on their 'will to live' and the progression of the disease.
I am one that wants this over even though I know we still have a ways to go. Once this is over he will be out of this nightmare, whole again and I can proceed to recover and move on. Why would someone want to put it off? Probably those that had a great marriage, who are married to their soulmate. But, I would say half of us here has not had a great marriage.
Oh, Nicky, I so understand what you are going through. I never felt that the length of my partner’s life was what mattered. Very often I wished for her ordeal to end soon rather than continue indefinitely. And I wished that for my sake as well as for her sake.
It was always understood that she would not receive treatment for any additional illnesses except for reasons of comfort. For her last year her appetite kept diminishing The person that I had to argue with was the Nutritionist who was adamant that I had to give her food supplements like “Boost”. Thankfully her doctor supported my decision to allow her to choose what or how little she chose to eat. Eventually she became unable to swallow without choking, and finally even when offered thickened liquids forgot how to swallow.
Your dilemma is somewhat different than mine. I’ve never read any research that says visiting a loved one regularly extended the life of the nursing home resident. And I’d be surprised if there is any.
There are a number of reasons to visit. Staff are very aware of regular family visits and that can make a difference in quality of care. We do want our loved one comfortable. Visits can also make our loved one feel less abandoned and feel more loved.
One thing I might suggest, and I suggest it because on a few of the moments my partner was lucid she was very concerned about the quality of my life. Assure your husband that you will be okay when he is gone. Leading to the end I began speaking to her about how much she meant to me, but assured her I was going to truly be okay when she was gone. I told her I did not want her to worry about me. I did this in the course of just talking to her, and while talking to the aides who were helping me care for her. I would tell them the wonderful things about her, and the fact that I never wanted her to worry about me when she died. I spoke naturally as if death were indeed the next step, which of course it was. And I continued to do this even when I did not know if she could understand.
I’ll add a post script to this. How often you visit has to depend on your needs. What you need to do in order to survive this journey. It is different for everyone. And some cannot handle the pain of visiting, and some cannot handle the pain of not visiting, and some just need a respite in between visits.
Elizabeth*, Charlotte and lIndyloo* have all said it all so well. I can only add that to "do the right thing" settles it for me when I'm trying to make a decision.
Thanks for all your input. Makes me feel a bit more "normal".
Charlotte, we had a very good marriage of 44 years, but I still feel a quick death is a kinder death than Alzheimer, for him, myself, our kids, the grandchildren & the rest of the family.
And Elizabeth I totally agree with all dignity gone - my husband would NEVER want to live this way.... if he could see himself, I know he'd want to die.
Nicky, Like Charlotte, I'm skeptical of the claim that the length of an Alzheimer's patient's life would depend on visits. I believe that our spouses' lives are determined by how much damage the disease does to particular parts of the brain, and not by the psychological effect of visits.
Many of us have experienced the conflicting thoughts of hoping our spouse will be as well and happy as possible wishing they will not hang on and suffer. I suggest that you remind yourself that these are only thoughts - that's all - and in your mind's eye, just watch them travel across your consciousness. Rather than being upset by them, try to give yourself a well -deserved pat on the back for maintaining your sanity in the face of these conflicting thoughts and emotions.
I face these conflicting thoughts and emotions all the time. One of the aides just returned from being off for 3 months her first comment to me was wow what a decline in 3 months. I sense we are getting near but what that means or how long it will be I do not know. Lisa had an aunt who went into a home at a fairly early age don't know what she had but her mussels all tighten up hands and feet curled etc couldn't move this just horrified Lisa.
Starting a few years ago she would say to me I just want to die lately she has been saying I am dying. I just teared up writing this. She can hardly talk, she hardly eats, she stopped using the washroom months ago, now she can hardly stand and walk, I would just like her to be released from this nightmare. It just rips me up when I visit but I need to be there for her. What a journey.
Nicky, I understand questioning this. I just hung up with a nurse at my husband’s MC that my husband was just threatening to kill someone if he couldn’t leave and was sobbing uncontrollably. They just “calmed” him with the latest trial of meds. My gentle DH never spanked our children or was in any physical fight. I believe that talk is a sign of the level of his desperation. The MC told me earlier this week that he has never made a physical move against a person there during his outbursts.
I just got out of the hospital for spine surgery and cannot visit him but arranged friends and family to visit everyday. Most of these people have started telling me that these visits are emotionally difficult for them.
I am really starting to believe that the bravest, most giving thing I could do is allow him to take his earliest “exit”. Sometimes I wonder if I should be looking for that exit. Are these thoughts a reflection of my guilt that I can’t make his hellish reality any better? Why should someone suffer so much torment - is this really respect for life? Do I wonder this because of my pain rather than his? I feel like I am observing a torture scene and I can’t do a damn thing to stop it.
We were blessed with a wonderful marriage until this disease tore life to shreds.
I am surprised to hear how much grieving is still left after experiencing so much grief already when one’s LO passes. Is it a different type of grief?
Excuse my ramble; I want so desperately to take away his misery. I hope I am not offending anyone here.
DW and I were married for 61 years when she passed. She was the first girl I dated seriously as a sophomore in high school, and I didn't date any others seriously in highschool or college. So when I lost her I lost a major part of myself. I went through feelings of grief as well as relief that she was no longer suffering, as well as relief that I could do something other that care for her 24 hours a day. 4 months later I met a woman, much younger than me, and found we had a lot in common. 4 months after that we were married, by my son-in-law, with all 3 of my kids, and one of her 2, taking part. I still think of DW often, but, thanks to major support from my kids, her kids, and our friends I am enjoying life. This is not for everyone, and I often wonder why it worked out this way for me. Maybe a higher power was guiding us.
Aug44, I had many of,the same feelings u r now experiencing. I wanted the hell to end I think as much for me as for him. For me it was the sense of total powerless in the wake of,the disease and not knowing how much longer I would have to endure it. I thought that surely once he passed I knew I would grieve but I thought that the grief before the actual death would spare me having to go through so much after. I was wrong. Yes the grief is different after they pass in that once they r gone (at least for me) I lost my purpose and also a huge part of myself. Did not know who I was --it felt like learning to walk again and starting my life over--making new friends, finding new activities and interests. I have made progress but it is a journey. I have learned that most of the world is designed for couples. I have a good relationship with my kids but they have their own life and I am determined to create a life for myself one day at a time. Try to take care of yourself because u cannot save him.
CO2 - what you described is exactly what I fear..... not looking forward to it.... I fear once he has passed away & my grieving is manageable, I will be too old & too tired to finally enjoy what's left of my "new" life....
Nicky, I'm coming up on 90 in a month and still enjoying life, eight years after losing my precous wife after 60 years of a wonderful marriage. I think the secret for both marsh and myself proved to be remarriage. Despite loving my wife dearly, once I accepted the reality that she was going to die and I was going to live, the engineer in me kicked in and I started thinking in terms of my "after" -- like a football coach putting a team loss behind him and beginning preparations for the next game. I knew I didn't want to spend the remainder of my golden years alone, so remarriage only seven months after my wife's death proved to be the answer for me. I realize remarriage isn't for everyone, but I do believe that beginning to think about and make concrete plans concerning life "after" is key getting through the awfulness of AD caregiving and to later happiness. What would you like to do during your "after"?
Right now I am sitting with Lisa waiting for the dr she is sleeping yesterday fell hit her head big goose egg. this morning found on floor as she tried to get up and just slipped down to floor. What is the dr going to tell me what can he tell me? Yes I want this to end for her and for me.
Nicki like you I cannot stand watching this steady decline knowing that there is nothing I can do about it is bad now and knowing it is only going to get worse what is the point?
Right now I am sitting with Lisa waiting for the dr she is sleeping yesterday fell hit her head big goose egg. this morning found on floor as she tried to get up and just slipped down to floor. What is the dr going to tell me what can he tell me? Yes I want this to end for her and for me.
Nicki I have a new life waiting for me, I have already started it but that is not why I want this over like you I cannot stand watching this steady decline knowing that there is nothing I can do about it knowing that tomorrow will probably be a worse day than today.
First, I think any nursing home telling anyone their visits are keeping him alive are as disrespectful as they are fantasy. Visits do not keep anyone alive. There are only two scenarios. In one the patient is aware of your visit, just as they are aware that you come and go as you please while they can not. That has to hurt badly. In the other the patient is not aware of your visit and may recognize your touch or your voice or even your smell, but otherwise not know you from Adam or Eve.
I wished for her to die sometimes so that this nightmare would end. I see no shame in saying I wanted the torture to stop. I also wanted it to end for her for the same reasons many have stated - an end to her suffering in a life that offered almost nothing and could only get worse, and where the inevitability of the end was already long seared into the brain.
The stress is as real as the fact of the disease. Learning that being stressed is your actual state can take years but dementia is a patient teacher and you have years to learn that in. Your life may have been normal for years but now it's stressed for years. Having our spouse in a NH doesn't change the fact of living in stress. It just changes how it appears. The fact of being trapped in an existence that can't go anywhere in a state long under duress while visiting our spouse who is doomed is a continuing state of stress.
I try to remind people of this not to discourage them, but to help them remember that the state they're in has real causes and real effects. I would compare it to asking people to pass their physics exam on a roller coaster. Don't get distracted now. Why aren't you concentrating?????? Because that analogy doesn't even include that your loved one and the life you had is dying while writing the physics exam on the roller coaster.
These events are more powerful than my analogy because you get exhausted by it all knowing you're in it but not when it will end for you both. When they are released from this, they truly are out of the clutches of the disease. You are not; but, the actual events have ended and the disease is gone along with it's constant source of strain. Going through our grief and assimilating what happened to us is just starting whatever we thought before. But if we want to come through or get past or go around or whatever you want to call it, with some time you do start on the journey CO2, and Elizabeth, Marsh and I to name four, have talked about.
The grief and assimilation take time. The spirit settling down enough takes time. Figuring out who you are takes time. Letting go of things and coming to terms with things takes time. I'm almost 3 years after and I'm honestly just beginning to look forward. But I have as much peace inside now as anyone and my insides were an old road sign shot full of holes and rusting in a hollow somewhere. I get up every day in a fairly empty world still and with some background issues still, but I have peace inside and I feel like myself even though I still don't really know myself. "Know thyself". Jesus Christ said. Here, you do it. Show me how.
One comment on Rona, who followed his true path I believe because his writing has moved from stressed to a voice that is empathetic and quite spiritual. Pardon my boldness Rona, but I'm quite sure you chose well. I see often that those that believed they saw their path, were right overall to follow it.
Dementia caregiving is a hard road that exacts a heavy price there is no doubt; but, having paid that price, I'm clearly a better person for it. I have no low self esteem left after living in that for almost my whole life. I get up in the morning feeling calm and myself inside and instead of worrying that I'm pushing 70, I really do feel fortunate that I have this time. I still have some effects and quirks and sadness and stunned moments that all that happened and that I'm way over here with no idea'r. But I am and I no longer question that or worry about it.
I hope that everyone in their time gets over this. It can be done as we can see from numerous voices in numerous ways.
Marsh, I'm 66. I'm glad you're enjoying life at 86. And Gourdchipper, 90 yrs young..... wow, good for you....
I agree with the others finding someone else could be the answer, but not everybody can find that someone else. I don't even know if that's what I would want. And recently I've been thinking what would happen if I found someone else & was happy for a few years & then this new someone got dementia also..... I cannot & will not go through this again..... I shouldn't be negative, but the only thing I do know is the thought of living another 20 years is scary... especially if it's going to be alone. I know that my husband cared for me more than anyone else, knew me best, was always there for me, soothed my fears & loved me unconditionally - for me right now, 20 years is too long without someone to share my thoughts, fears, joys, sadness. And as all of you know, sharing with our kids is definitely not the same.... not only are they working full time & busy raising a family, their ideas are different from ours. Sure they can help out, but don't necessarily want to listen to all the little boring details of our daily lives.
After reading all of your posts, I have a better idea of what to expect while I'm on this AD journey & also after his death. I enjoy reading about your thoughts & experiences - it's been helpful.
Nicky - I just turned 65. I really don't see much of a future since my mom and siblings died in their 70s.
Like so many here I went from home to marriage - never had a time of being single. It has been a challenge to start doing all the upkeep on the RV that my husband did. As I become more independent I miss my Mr. Fix-it and most of know I can do it myself if need be. I do believe for men it is easier to move on than a woman. I think the majority of men that have been on this site, they have moved on to new loves. Maybe when you are older you realize life is short. There are women here who have moved on, often while their spouse is in the last stages of this horrible disease. But for the men and women who have not- they have not for various reasons. One for me would be what you said: I don't want to get stuck with being a caregiver again. He would have to have the funds to pay for his care in an assisted living or nursing home vs me being stuck doing. Maybe some who have remarried will feel safe to share how they approached this issue when choosing to marry again. But then again, a new spouse might be stuck taking care of us.
It is so individual and we all have to do what is right for us at the right time. Having never been single, before I ever married again I would want to know I can do it on my own. I don't want to marry because I 'need' someone to take care of me. I also don't want to marry a man who 'needs' a wife to take care of him. I have had 46+ years of taking care of a man - tired of it with no end in sight. But then again, one never knows - that someone special just might show up out of the blue.
I belong to a neighborhood ladies group. One of our members is a pilot and her husband, also a pilot, died in a plane crash while flying with someone else. That was her fourth husband. A year or so after that she began dating again. At one of our potluck's we took a poll about dating/marrying again. It was almost evenly split. 50% liked being with someone. 50% said "Been there, Done that. Never again!". There were none in the middle.
I will not marry again or even date. At this age I finally have "girlfriends". I always felt best when I lived alone. Still can't imagine what possessed me to get married. Had never imagined that. I figure either I will team up with the two brothers I like, or one or more girlfriends. Sorry guys. To each his/her own.
I hope I can find some women to build friendships with. I think that is something I want more than a mate. HB always didn't like me have girlfriends unless he was also friends with their husband. As a result I didn't have any women friends of my own. When he is placed I plan to start attending church again - maybe meet some nice women there - women that don't swear, are single or have freedom for friendships. I think that is where my mind is for the near future. I grew up taking care of my younger brother and sister, then my nephew, then got married and had a husband to take care of, then kids, and still taking care of my husband. If I marry it has to be a man that will take care of me.I am tired of taking care of others. I want to know what it is like just to take care of me. There is a woman I have known since diaper days. We lost track of each other after graduation and I got married. We reconnected after our high school reunion in 2010. Been trying to get together but with my husband we can't.
I have to say I never felt I needed girlfriends after I met my husband & got married. My needs were being met by him, our immediate family (parents) & our children. I could never understand the appeal of girlfriends getting together - I was much more content spending time with him - we are both homebodies (hb a bit more than me). Unfortunately, my need to be a homebody is still there, but now I'm not content spending time at home because I'm alone & makes me lonely. So now I'm finding myself looking for girlfriends, which makes it more difficult because we moved a few years ago - I only had one real good friend I enjoyed spending time with. My needs have changed & it feels foreign trying to make girlfriends. I'm not anti-social, so at the beginning when I started meeting girlfriends it felt good & I thought I'd be fine. But I soon realized that it wasn't what I really needed - just doesn't seem to be enough - my need is still not being met. I have 3 new girlfriends that are widowed & are very nice & I enjoy their company, but they are not enjoying widowhood. They miss their husbands terribly - they feel the void in their lives - and one of them has been a widow for almost 10 years & is still not really happy. Very discouraging for me.
I know people are going to suggest I find new friends that enjoy life, but easier said than done. Some of them are still married & doing things as couples - some are single & are either wanting to go out to clubs to meet guys or they are happy they don't have a guy in their life anymore - I don't fit anywhere in there.....
I am really enjoying living alone and working on myself--have never really had the opportunity to do that before. This past year being out of the workforce and with absolutely no family responsibilities has been so fulfilling. I do see my friends and tend to function in networks of people--I enjoy that. But oh my goodness, how I love living alone! Bandit is good company--makes the apartment homier--and gets me outside in the fresh air a lot, and chatting with the neighbors and so forth--so I'm not in here chanting mantras and regarding my navel. Eat what I want, when I want, sleep when I want, in peace and comfort--eight hours last night--almost unheard of for me. Watch what I want on TV (i.e. Netflix, Amazon Prime, DVDs), or just read in peace and quiet. Play the harp or my whistle, browse the Net, try to draw. I'm not a holy roller, but get a lot of satisfaction from being part of the music ministry at church--and when I do my Lauds, Vespers, and Compline at home, to try to add a little music with the harp or with just singing the Psalms. Very fulfilling--sort of mystical--and I couldn't work on this stuff if I was living with anyone. I do see my women friends, but am not interested in doing lunches and all that more than maybe a couple times a month. Looking back on this year (I drove up from the Heartland last Dec. 28), I can't believe how much I've grown and changed...hard to explain...but for the first time ever in my life I'm taking care of myself--in a good way--and not so caught up in taking care of others and of having to dance to others' tunes. And I'm loving it. I went through the fires of Alzheimers with all of you by my side, so you know how it was. It damaged the bejesus out of me--I almost died, too--emotionally if not physically--and painful family issues on top of the Alzheimers just about did me in. So I am, I think, doubly grateful and doubly enjoying this nice first year of being done with all that. I don't know what the future will bring, but for me, I'm looking forward to spending it mostly alone, with my personal boundaries raised high. I like friends, parties, social events and all that--just not too often or too intrusively. Re-marriage doesn't seem to be on my radar--I think I'm past that stage. And besides, you don't get the best twice.