I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. The person with whom I spoke about this issue had a list of very personal, spousal related guilts, which I listed in the blog. Should we feel guilty about those things she talked about? In some cases, maybe guilt is justified. Maybe not. What do you think?
When I was quite young I learned that many people are raised to feel guilty--whether they are guilty of anything or not. Thankfully, my parents never did this to me. I abhor the idea that some are taught that we are born in sin, original sin, collective sin--whatever--I am not here to debate any of that. I just don't see how it can make someone feel good about themselves. So I look at guilt the way I look at a legal trial. The defendant knows whether or not he is guilty, and the jury makes a considered verdict--not always the right one.
Guilt is a very, very destructive emotion. It keeps you from doing what is best for yourself and often enough what is best for your loved one. There was a moment when I was visiting in a facility crying about my husband's condition and a counselor came up to comfort me and said, 'don't feel guilty, dear.' I was astonished and told her I didn't feel guilty, I hadn't caused any of this, and if I had that kind of power, I'd reverse it--why would I do such a terrible thing to us, why would I feel guilty? And that's what it amounts to w/AD. The things the woman told Joan are all normal--most people don't even like to change diapers on a baby--so you don't want to do it for a grown man--that's normal--nothing to feel guilty about. Annoyed, put upon, yeah, all that stuff, but why guilt? While I still loved my DH, I didn't want him to touch me. I felt bad, terrible, deprived of love, upset about him, but hardly guilty. We all do a lot of things we'd rather not do, AD or not, and then go on to the next thing. Grump, complain, fuss and yell--all normal stuff when in such situations.
Over and over again in life, when I've felt guilt coming my way when I didn't do anything wrong, I'd say, I DON'T DO GUILT! unti I meant it! It takes practice, but unearned guilt never helped anyone. If you think it helps to feel unearned guilt, then hold on tight, keep it close, otherwise just give it the boot. And don't feel guilty about doing that!
As is typical around here...your relative has described my emotions to precision.
Every line item applies to me, except in that I have not yet had to change diapers or select a caregiving institution. But the thing is...I already know how I'll feel about those things in advance, and it's what she says.
Caregiving, as it becomes messier and more labor-intensive, is not a mantle I'm going to take on with a brave and noble aplomb. Well...it might look like that to people not inside my brain, but that's not how I'm going to feel about it.
I think a lot of the guilt comes up when some caregivers compare themselves to what others in a similar situation have done/are doing. I guess it's human nature to do so, but it's really not fair to do that to ourselves. As we all know, each patient is different, relationships and past history are different, financial situations are different, etc. Also, I think some people are just hardwired to feel guilt.
Guilt is a strong word. Maybe what I feel is more along the lines of regret that I don't have a more warm and fuzzy, nurturing personality. It's not really guilt, per se--I recognize that I have the personality I was born with and I'm doing the right thing vis a vis my spouse--but I can't help noticing that a more maternal or touchy-feely kind of person might be helpful to him. Oh well.
I think for there to be guilt there has to be an action causing whatever the guilt is attached to. That action for some can be as minor as a bad wish, for others something absolutely obvious and active. None of my DH's conditions are the product of a wish on my part. None of them are the poduct of an action I performed. And none are the inadvertant (unplanned, unexpected) result of anything I've done.
As long as I do my best to care for him and make his life as good as possible as long as I possibly can, it will be enough. I can do no more. And, if/when I have no choice but to place him, it will be because that is the best I can do for him. And still I will be advocating for him--good enough. There is no guilt.
I do feel badly about his losses and the things he'll never have the chance to be a part of, but not guilt.
other than occasional guilt over lack of patience at times during the journey, i dont think i feel guilt either- knowing neither of us was to blame for the disease. divvi
I agreed with much of what she told you. I have no desire to be changing diapers or cleaning up my adult husband. Nor do I look forward to feeding him or other caregiver things. Guilt? I am not sure - I guess so. My oldest sister is a born caregiver. She loved caring for her husband but then she was only married 2 years when he had a stroke. Recovered from that but within a year seemed to have given up. She kept him home so as to not loose her savings and he wanted to die in his home. BUT - her husband knew her up until the end. With AD we become strangers to them. I already no longer want affection from him. I think I shut down very early in this diagnosis.
For many guilt comes based on our childhood. If one grows up with abuse, high expectations or trying to be the peacemaker guilt can come. I was a perfectionist and peacemaker as a child. If I didn't think I could do it perfect, I wouldn't try. My grades were how I measured how 'perfect' I was. I also tried to be the peacemaker mostly by taking responsibility for something even if I was no where around. I was going to get blamed anyway, so might do it to begin with.
No guilt here, either. I can only do what I can do and when the time comes for placing my wife in an assisted living facility or a nursing home, there will be no guilt because I'll only place my wife there when I can no longer handle things myself or with the help of some part-time aides. But there will be no guilt.
For a while I was confusing sadness with guilt. What has happened to our LOs was not of their or our doing. It was uncomfortable being able to enjoy what my husband couldn't. Now that he is gone I can finally begin to sort things out.
I must agree with Divvi (again!)..any guilt I feel is from my lack of patience at times (most times). Some are natural caregivers, not me, but I know that if things were reversed, G would do even worse than I am. He has always been uncomfortable around those that are ill...avoid at all costs, so...we do what we can.
I believe bluedaze might be onto something. Surely some folks are confusing guilt with another emotion. If not, I feel sorry for them. Especially Joan's family member. I'm repulsed by having to change poopy pants but I don't feel any guilt about that. I feel trapped and would love to get out of being his caregiver, but I don't feel guilty about that. I complain about a lot more than tiredness and I don't feel guilty about that. And, bless his heart, when his time is up, I don't plan to mourn or spend a lot of time missing him. I've been mourning his loss and missing him for years. Nope, no guilt here, not even for the times I've been less than stellar as his caregiver. I'm HUMAN and I'm not perfect but I can honestly say I do my very best every day and I think that's all anybody can ask.
I guess I am not the only one who doesn't have patience. When I would read the posts I would think why couldn't I be like that. Not having patience is no surprise to me because I have never had an over abundance of it. After reading the posts on this thread I don't feel so bad and just hope and pray I can make it through what is to come.
Jean,as I read what others further along were doing I would just say to myself: not me. When he gets there he will go into a facility. I have no desire for the nitty gritty of everyday care when he gets incontinent, etc. I just do not see me having the compassion or empathy to do it for him. If our marriage had been better, then maybe.
But then again, until the time comes I guess we don't know for sure.
I am so glad I wrote that blog and received such honest comments. There is nothing so isolating as thinking you are alone in your feelings. Getting it all out there is good for all of us. I do share some of the feelings I wrote about in the blog, and I just can't help feeling guilty about it, particularly the one about loving my husband differently. Somewhere inside of me, it is programmed that just because someone has a disease, even one that changes his personality and abilities, I should love him the same, and care for him with willingness and self sacrifice, no matter how disgusting the job may become. Must have something to do with the "in sickness and health" vows. Maybe it is because I have loved him so much for so long that I feel guilty not wanting to be the chief diaper changer and prisoner of caregiving. I don't know. I really don't. I just know that I could relate to what my relative said about the guilt.
Everywhere I turn, I see husbands and wives, some quite elderly with their own health problems, taking care of their spouses, who need the care of an infant. They keep at it until they are ready to drop from exhaustion. They place them only after they are on the cusp of nervous breakdowns or death themselves. There will be no way that will be me, and for that, at least, I feel no guilt.
Joan we all have our limits - and there should be no guilt if our limit is different than someone else.
I think the idea of 'til death do us part' whether our spouses death or our death from caregiving has been instilled in us since days of old. But we have realized that we need to care for ourselves first if we are to be her to care for our spouse. That care can be in home or placement where we then care for them by becoming their advocate. I cringe to think of future generations and what they will do - we have become such a 'disposable' society.
Right now I have no intention of going through diaper changes etc. One reason is there is NO WAY I could turn my husband over and get him into a shower and clean him up. When that time comes I will look for a facility and place him. He had two accidents a while back but they weren't too bad and I think I handled them quite well but if it was an everyday thing I know I couldn't do it.
"Ouch!" Charlotte, I think you're right. As the elderly among the elderly, I think I'm OK, but society too often thinks I'm getting 'disposable.' As for that 'sickness & health' stuff--when you're a starry eyed 20 y.o. bride you are all for it. Fifty years later, it's a whole different ballgame, new situations, new rules must apply. And I am not going to apologize for growing old--which more and more of us do. I don't think we were really meant to live this long and be caregivers when some elderly need CG's themselves, altho I'm not complaining.
As for loving DH, I came to love him in a much different, more profound, more gentle & understanding way. It was not hormonal driven, but it was very precious, he was so vulnerable, and I could not help but contrast that with his having spent most of his life only wanting to care for and protect me & our children. That did not mean I was eager to be his CG, that I didn't rebel and lose patience, but it was in me to protect him in every way that I could. Did I hang in past the time of caring for myself? Yes, well, so be it.
The day for placement is getting closer and I'm waking up in a panic in the middle of the night thinking, I can't do this TO him. Guilt overload in its most awful form. It feels criminal to deceive him into going into this place. I'm scared. I feel sick literally..and then I'm trying to breathe and THINK..this man has been mean and hateful to all of us. Until he was medicated with risperadol, he was nearly impossible to be around. In the years before he was diagnosed, I kept an 'escape bag' packed because of his anger. WHAT is wrong with me now to be so sad and feeling sick and afraid? Do I have the stockholm syndrome or something? I'm a trained counselor for goodness sakes.. This morning, I too want to refuse this GUILT BAG and declare that I've done the best I could maybe over and beyond what anyone else could do or would endure. Will work hard to keep those thoughts when the scaries creep in.
Judy my thought is that placement is finally admitting that there is no more that you can do. The train is rushing through the tunnel and you have to get out of the way. Good luck, dearheart.
Reading all the other comments, I think everyone speaks in general how I feel on this subject. I don't feel guilty in the caregiving of my husband because I do the best I can do in trying to take one day at a time. I suppose the guilt that I do feel is the fact that I have lost the feelings of intimacy with him and yet he has not lost his feelings in this way. In fact, just this morning he asked me why I'm not interested in sex with him any longer. I suppose this is where the guilt comes in because,of course, I can't explain to him how I feel. So instead, I just say that I'm very consumed with everything I have to do on a daily basis and that it just doesn't come to mind plus I'm very tired.
I'm not sure how I will handle situations such as incontinence, feeding, etc. I don't know how helpful family members will be considering everyone has their own lives to lead and they can only contribute what they can insofar as help. I know I need to keep him at home as long as possible due to finances, but I know I will not feel guilty -- just sad to see him deteriorating and there's nothing I can do to change any of what's inevitable to come.
Charlotte - I am 55 and don't for a minute consider myself elderly. However, given the stressful challenges of dealing with DW's decline and the comments I've fielded recently about "how much older I look all of the sudden", I have decided I am..... Early Onset Elderly
Guilt,Guilt, Guilt! How do ever get over this? I placed my ALZ husband 8 weeks ago. Yes, he has declined, looks sad. He was total care, feeding, all ADL's. I miss him more and more, and struggle with this. I hate leaving him when I go to visit, but down deep in my heart, I know it was almost unbearable for me, but now I still feel like I am drowning. I still have not slept in our bed, I have gained 10 lbs. Nursing homes absolutely do not take good care of people, therefore, I must always be watchful. I feel almost frozen with guilt. I always think, how could I have taken him from his home? I ask God daily to end this horrible nightmare- as I feel I have almost nothing left in me. Is anyone else so sick of living, breathing, ALZHEIMERS?? Some may say, you just have to remain positive, etc., etc., but maybe that person's spouse is not as advanced, and it has not been yearrrrrrsssss. As I push my husband through the hallways of the NH, trying to keep him sitting down, (he sits down and stands up 1000 times)I feel like I cannot hardly do this anymore- anyone else feel this way? I still love my husband the very same way I always have, even though he is late stage. I think that is more difficult, loving them so much still. I was never able to emotionally detach. I know I will make it through this- Alzheimers is not going to get 2 of us.
I haven't yet read what anyone else has had to say as I type this. I'll do it in a little bit and might have more comments, but yes, that is exactly how I feel. My husband has not died yet, but just from the placement I feel all of that. I didn't experience the wet bed yet, but I did experience the wet floor a few times in the last weeks and the wet bed was coming. Etc.
And now the comments:
Betty is right. One should not feel guilt. But I do anyway. And I feel guilt that I feel relief that I'm not going to have to do the wet bed and diaper routine. I really think it is important not to hide the fact that I'm feeling all of these things from myself, or I'll end up feeling guilty that I'm not feeling guilty enough. <grin>
Judy, the one thing I don't feel guilty about is placing him. If my neighbor had not stopped him in time for the police to catch up with him he would have died in 100+ degree heat after causing me bodily harm. It is easy not to feel guilt about placing him because I wasn't the one who made the final decision. A doctor and RN in the emergency ward decided it was not safe for either of us for him to come back home with me. And I keep reminding myself of that.
ckkgram, the nursing home my husband is in takes very good care of its patients. I do not spend hours there. I show up for half an hour to 45 minutes with him, and sometimes additional time with the doctors and nurses. I show up on different days and at different hours. I'm his advocate, but I'm staying out of the actual caregiving although they are willing to let me do anything I'd want to do for him. I prefer not to.
My husband is clean, well cared for and being fed appropriately and is getting the appropriate medications. The staff is kindly, not just to him but to everyone around him.
I slept in our bed that first night. Had some problems staying asleep and sometimes still do, but I'm getting better.
Do I feel the way you feel? I don't think so. I'm beginning to remake my own life. So far that has mainly been hibernating, but I can already tell that is going to change. I feel great affection and love for the man who shared my life for the last 50 years, but I haven't been "in love" with him for quite a while now. There is a difference.
I'm going to make a suggestion. Go home. Stay home one day and just take care of you.
For me guilt has come because I always think that if I try hard enough, I should be able to do this indefinitely. With DH in respite, I came to see that kind of thinking as my own "caregiver dementia". To think that I can keep going as DH declines even further, and as my own health declines even more rapidly, is just crazy thinking.
One reason I feel guilty is that my husband expects me to fix everything, and I can't. If he's tired, he looks to me. If he's in pain or not feeling well, he looks to me to fix it. When I take him to the doctor, it's always "you should…", so they expect me to manage everything, too.
This week I read Gail Sheehy's book, Passages in Caregiving. I recommend it very highly. Yes, she had enough money to hire any help she needed and get to see any doctor she wanted, and her husband had cancer instead of dementia—but the emotions and caregiver thinking I believe she covered very well. One part of the book hit me right between the eyes. She said that a therapist told her: "Your husband projects onto you the person who will make him feel better, help him through the day, the person in whose presence he can feel relaxed and emotionally supported." What was wrong with that? "Nothing….AS LONG AS YOU HAVE NO OTHER LIFE." (capital letters added for emphasis)
I guess my guilt is because I do want that "other life". So far I've spent 12 per cent of my life taking care of a husband with dementia—and probably another 12 per cent before that dealing with dementia before it was diagnosed. I feel guilty because I keep thinking that I'd like some time outside of the role of caregiver, and I'd like to have it before I drop dead from fatigue and stress. And, frankly, I’m starting to be angry that I feel guilt over that. I really do think that I shouldn't have to feel guilty because I want to survive this terrible disease.
At 82 there is not a lot of the "other life" left and I refuse to feel guilty for wanting some me time. For Heaven's sake you are doing the best you can and that is good enough.
Well, I refused to take any guilt for anything connected with this horrible disease. I didn't cause my husband to get the disease nor could I do anything to fix it. Why should I feel guilty?
As far as maintaining my life during all those years...I did my best. It wasn't always easy.....I isolated myself....it was self-preservation. Who wants to mingle with healthy couples who are still enjoying their lives? I had nothing to add to their conversation nor could we go on trips, attend parties or even have people in our home due to all the damage he did there.
But, I got help to care for him and I joined groups, I initiated conversations, arranged lunch dates...I put myself out there. I basically reinvented myself as an individual. I was no longer so and so's wife or so and so's mother....I was now Sandi...an interesting and fun person.
Am I guilty now that my husband is dead and I am doing fine? Heck no....he is proud of me, I am sure.
Just remember my mantra...."do not let this disease take two people".
I feel guilty sometimes about spending hours playing spider solitaire or reading when DH would like some attention. However, he seems to thrive on it and has been very well behaved. I am not planning to feel guilty about placing him when the time comes. I am already preparing friends and family by explaining that I've switched his day care to the place where he may eventually be placed. There is often just a beat of silence as this sinks in to my listener, and I go on to say that I'm hoping to keep him home for a long time yet. But in fact I will be surprised if it's longer than a year or two.
I still have many feelings and sorrows and much sadness about our situation, but thankfully still don't feel guilty about any of it.
Everyone here loves and cares for their spouse to the best of their ability. I just hate to see people feeling guilty for something that is not their fault. We bear so many burdens, guilt shouldn't have to be one of them.