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Can someone give me advice... why do I feel so much guilt?

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Probably because you wish it would work and it didn't. Try not to beat yourself up about it.
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Just adding to previous post. Think about all the reasons it did not. You did try, more than once it sounds like. Give yourself credit for at least trying.
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Possibly because as a man, you feel like you must fix this, but there is not any fixing that can be done. Guilt is for when we have done something wrong. You have not done anything wrong. Also, she's in memory care for a reason. She needs to be there. People in nursing homes often speak of going home, but don't always mean the home they were just in. Sometimes, they mean their childhood home. It sounds like it is just better for her and everyone else that she is in memory care instead of at home. Are you feeling guilty because she's in there and you don't have to be?
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Can you ask the nursing home social worker to find you a support group of other caregivers, preferably spouses? You will find so much support. I think it's helpful just to hear other people struggle with the same issues you do.

You are providing the best care for her by not taking her home. Your only job is to make sure she is well cared for and you are doing that. Deep breaths! And please see if you can sit in on a support group. I bet you will find it very helpful.
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My mother had dementia and was also in her 90’s. To make myself feel better, I tried to take her out a few times. It never worked. Her idea of “home” was at her parent’s house in the 1920’s. She would have extended panic attacks and wind up in the ER because she thought she was having s heart attack.

You are doing the best you can.
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My mother has similar behaviour. I agree with the posts below. "Home" doesn't necessarily mean her most recent home, but rather a concept of home that is not in the nursing home. If she needs the care offered at the nursing home and you can't provide it at your own home with nurses and aides, then it's best to leave her there. With my mother, I found that every change of venue was causing anxiety. She's best when left alone in her own environment. One of the things she doesn't like at her senior assisted living (memory care) residence is being told what to do. The aides have learned to leave her alone when she says "no."
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We want to please them, assuage our feelings of guilt (which are unfounded), and make them and us feel better. Can’t be done. You might list all the reasons she needs care there. And in another list all the reasons why being home doesn’t work anymore. Then you see clear valid reasons on both sides of the coin. We can’t go back to how it used to be. You are facing a "loss" of your wife as she was and you desperately want it to be ok again. The sad truth it isn’t and going through dementia with a loved one is like a long slow death, bit by bit.
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Who wouldn't feel guilty. You want to be with your wife...you took a vow "in sickness and in health....your friends may even say.."how can you do that"..the kids also might say something like that.
I am sure this was not an easy decision for you. I am sure that you went through a lot of "stuff" before it became clear that you could not safely care for her, that you can not be up 24/7 to make sure she did not fall, did not leave the house, did not scald herself when taking a shower, did not leave the stove on....any number of things that would make it unsafe for her, for you. Or physical limitations, getting easily into bed, getting to the chair safely, getting in and out of the house safely...
Notice how often the word safe comes in here? That is what you care about that she is safe.
You can tell her that she can come home when it is safe for her to do so but right now she would not be safe at home. You also have to be concerned about your health and safety, what would happen to both of you if you were hurt trying to care for her? Who then would care for both of you?

I also read that when some say they want to "go home" or "come home" it is not a physical place but to a time when they were well. So in her case maybe she really is not talking about a physical place. Just tell her that she is at home where she is, she is safe, that you love her and that you will be there for her.

Know you have done the best you could, no one could ask more.
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drooney Dec 2018
You are so correct. Have worked with Alzheimer's patients, who when family did try to take home, it did not comfort them. "Home" isn't a place, it is a feeling. Home is safety and good memories. Home is our happy past!
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First, I can't imagine what the guilt must feel like and feel sorry that while doing what's best for her, it feel so bad for you. You've probably thought of this already, but would bringing things from "home" help? An old family heirloom blanket or wrap, maybe? Familiar things might ease the pain for both of you. Plenty of photos she can see from where she spends most of her time in her room. Surround her with things of her favorite color. Even having one of your coats there at times you can't be may help. I hope you can find something to ease your feelings of guilt. Good luck to you.
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Almost everyone wants to come home. They believe that everything will be good and happy like it used to be.
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Hi JLEGAZ85,
My 97.5 yr old Mom has now been in an excellent assisted living and memory care for one year and 8 months. Each day in the afternoon, she calls many many times to tell me she wants to come home. It breaks my heart each time when I repeat and repeat that she is in the best place as when she was here I could no longer work, sleep or go out with my husband. We took care of her 24/7 for 10 years so I understand her wanting to be with us always, yet at the same time, the care that she needs got both my husband and I sick (I am almost 70 and he is 67) and now we need to take care of ourselves. A few minutes later, she says she is happy where she is at and has no recall that she called 15 times for me to go pick her up.

I have gotten better at not allowing the guilt to overtake me. I now only break down and cry once or twice a month. She is my mother after all and she was a good mother and friend. It hurts me so much that I cannot bring her home even for a visit as she will not want to go back. We take her out to restaurants every other week and we visit her two or three times a week. We are self employed and still work for a living and for our small retirement - which got even smaller in the 10 years we took care of her.

It is an unwinnable situation. It is the hardest thing I have ever had to deal with inside my heart. And it is hard to accept the reality of my not being able to care for her still.

I understand where you are at. You are not alone. I thank God for the good days and have learnt patience repeating the same stories each day over and over again. Yet, we are human with feelings and those we must accept and know that we have done all that we can humanly do.

Not easy. I send all of us who are in this situation many many blessings and health for 2019!
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peggy40 Dec 2018
Thank you for describing exactly how I feel ❤
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I think the guilt is the conflict between what your heart wants to do and what your brain knows what needs to be done. I also think many others also struggle with this feeling as we watch our loved ones decline with a terminal disease and we feel helpless.
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My husband also wanted to go home. Finally I decided to not say, "Goodby", "I'm going home" or anything like that. I just give him an excuse like I have to get some groceries, or in my case since we have a small dog., " I have to take care of Suzie. I'll be back soon." Since he doesn't remember that I have visited after I'm gone for 10 minutes, that satisfies him, and we don't have the problem of him wanting to go home. I have a friend who used to tell her husband that she had to go get the car, and then she just left. It worked for her without the problem of telling him he couldn't go home.
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How will she react if you just say "you are home" or "you are home remember? Here is your ___&___... this is home. Maybe combined with not talking about you going home or some of the other ideas mentioned here. I think remembering that "home" may not mean what you are thinking to her each time she asks to go, it might even be different each time she asks, is important but most of all try to release yourself of all that guilt, you really don't have anything to feel guilty about. Though I know that is far more easily said than done. This disease takes so much from all of us, more than simply the patient, it's so unfair!
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jlegaz85 Dec 2018
Thank you for your in put it all helps!
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Elders often speak of days of yore. They may say "remember that house in West Hartford, CT?" That generalizes the word, "home."
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DITCH THE GUILT - you still have the 'until death us do part' stuck in your mind - just because she is in care doesn't mean you have abandoned her rather try to think that you have optimized her care by having professionals take care of her - not you sacrificing your limited physical resources to the point that you die before her then she will be without your love, care and protection - she will be much better off with you visiting & monitoring her welfare than if you had her home & died then she would be truly lost -

You have done as much as you can on your own & I'll bet those weeks you brought her back were hell on you both - don't do it again - 'home' is an idealized place in her mind that never existed nor ever will - if asked she probably has the bedroom from 1 house, a garden from another & a kitchen from some place else [that never needs cleaning] mixed in her mind as 'home'
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