My husband is now after 2 months in Memory Care doing okay after 12 yrs of Early Onset ALZ. I just cannot stand him being so alone walking around.
He is in late stages but the extra caregiver I hired is exceptional and gets him to eat. I have her spend about 6-7 hrs a day with him and I go everyother day. I have cameras in his room and some of the staff just does not care.
During the week, staff is fine, but weekends are horrible. I am always trying to figure out how I could bring him back home. Does this make sense?
You say he’s doing okay after two months. He’s adjusting to his new normal. He has an exceptional caregiver every day, and you’re there every other day. If you take him home what’s better than that? And how long before you can’t do it anymore? And what transition would have to be made then?
You done the best anyone could do. Maybe you had a picture of what it would be like for him there - but it isn’t that way. There’s nothing wrong with his walking around alone. His brain may be too broken to engage with others as a normal person would. He’s sick. He isn’t ever going to be the same as he was, that’s just the way he is. Be glad that he is walking and not bedbound with all the problems that brings.
I feel your post is more about you than him. You’re uncomfortable so you want to change things, yet he seems to be where he needs to be.
I am so very sorry, but acceptance is needed here, not drastic action that takes you backward into a worse situation for both of you.
He is not being mistreated so I did not mean to give that idea.
I can assume this is grief and it only gets worse and not better.
I know that 2 months is not long in Memory Care. I feel I have been grieving for 12 yrs since he was diagnosed and now I am face to face with this horrific disease and what it has taken from him and me. Thanks again for your thoughts!
See if there is a local, in person, grief support group. They are very helpful and you won't feel so alone either.
My husband was diagnosed two years ago with Frontal Temporal Dementia-I'm pretty sure he has had it a good deal longer. I call this the long good-bye. The changes continue, and nothing can be done about it. I do the best I can and that's all I can do now.
Again, I am so sorry you're at this point in the dementia journey.
But take a moment to think about how you would answer this question if a friend asked you. Would you tell her to immediately bring him home? Or would you tell her to consider all of the pros and cons? You have a wonderful (one) extra caregiver for 6-7 hours a day. So for 17-18 hours a day you would either have to hire additional caregivers or be on your own.
You say that via the cameras you can see that *some* of the caregivers don't seem to care. May I ask exactly what you mean by that? As I'm sure you are aware, they have many residents to take care of, so they don't always have time to spend long stretches of time with each individual. They may be short-handed - ESPECIALLY on weekends - which is typically a shift most people don't want to work. And sometimes you may have someone who is an EXCELLENT caregiver in the practical sense, but may not be the most nurturing of people, so may not stop to engage in anything but the actual care of their patient. It just really depends on the situation.
I know it's hard. But consider that you might not find another two or three perfect caregivers for home. He is in late stages - so you know things would be difficult for you on your own. Your home is not likely set up with all of the protective measures that a memory care facility already has to keep him safe.
You can sleep right now. If he was at home - even with caregivers - every sound would alert you to potential needs. As he progresses, he might only want you or he might not want you at all. You spend time every other day now. But you would be spending 24/7 with him at home - with caregiver assistance. That is very different. YOU would be 100% responsible for him all the time. If the caregivers call in sick or quit. YOU would the one filling in/covering the gap.
I know it cannot be easy to be in your situation. It breaks my heart to even think about it. I know it breaks yours to have to make the choices that you do. But your heart tells you that he should be home - because weekends the caregivers don't seem to care. Is he getting bad care? Are his needs being met? If they aren't actively doing something wrong, and they are meeting his needs, and you are feeling guilty - I will give you this advice - that I received here.
Guilt - is likely the wrong emotion. Guilt is for someone who did something wrong. Grief is for someone who is hurting for what they have lost and hurting for someone who is struggling. Consider whether moving him now will make this better for him. Or actually make things worse. Is he doing ok because he has the structure of the memory care? Would bringing him home upset that structure and cause him to struggle more? Would your desire to help him actually hurt in some way unintentionally?
There is nothing wrong with wanting to bring him home. It makes total sense. But outside of the weekend staffing issues, which I think happen everywhere, is it possible that some of the things that you are seeing are just a product of the disease and would happen anywhere?
Two months is a lifetime for you - but also not that long. I would gently suggest you give it more time. He is safe where he is, and it takes time to adjust. For both of you.
It sounds like your husband has adjusted quite nicely, now it's time for you to adjust nicely with the fact that he is receiving the 24/7 care he needs and that there is NO way you could provide that same care at home.
You are mourning the husband you once knew, but is no longer there, and that is certainly understandable, but it's time to start living in the "real" world and accept the fact that he will never be coming home and that you made the right decision by placing him where he is now.
So please just enjoy whatever time you may have left with him, and quit second guessing your decision regarding his care.
You did the right thing.
But please... for his sake and yours, do not bring him home. Only option would be if you have 24/7 aides at home. Maybe you can do all-day visits on weekends?
You are no longer able to take care of him alone. You know this. He is in MC for a reason. You may think taking him home would be better for him, but in reality it would be hurting him. He needs more care than you alone can do. It's not your fault! Just the progression of this awful disease.
It's a fact that caregivers can die before their loved one, from the physical and emotional stress. If something happens to you-- even an injury-- your husband will be without help and you won't be able to heal. You owe it to him to keep yourself safe and well as long as possible.
He will worsen and you would likely have to place him again. Could you handle another round of that? Could he? No.
He would suffer from not getting the 24/7 care he needs! I think this is one of those sad scenarios that we do when something is the best for those we love, and worst for us.
Best of luck to you
God bless you.
It has been suggested to me by a number of people that I have overdone my part in all of this -- to my detriment and his. I'm beyond exhausted, seriously depressed, and spend at least some part of my day just crying. Ariadnee is right. It's a daily grieving, like watching a small death every day, and we have no idea when it will end.
We have had a particularly close and happy 30 year marriage, and when he got sick (which is when the dementia, which I think had been developing for a year or more, came on strong) I spent up to 15 hours a day in the hospital with him. This nearly killed me and gave him the idea that I should ALWAYS be there. When he came home we got home helpers but I continued to give too much of myself, which allowed him to think the helpers were mean or careless. Now he's in a beautiful AL place but he calls many times a day to say how lonely he is and how he misses me -- and of course the guilt gets to me and I drive there and spend a big part of the day -- when I NEED to be paying bills, selling his house, going to the dentist, exercising, etc. -- with him. Frequently he spends my visits complaining. Now I'm trying to follow good advice I've received and leave him alone every other day, and only spend an hour with him when I'm there. Result: he's getting to know people and taking walks by himself.
He needs to be there and I need time to re-create a life for myself. So no, don't bring your husband home. For one thing, that cruel memory loss means that he is not soothed by more time with you -- he won't remember that you've been there after a few hours. Dementia of any kind is a nightmare world but aside from a few medications there is nothing we can do. At some point our doc's assistant, who is very wise, talked to me about various memory care places here. I asked if they were all unpleasant, in the sense of simply letting people sit in their wheelchairs and stare into space, and she said yes, pretty much. But then she said, and I've come to appreciate the sense of this, "The lack of stimulation and comforting constant attention helps them die." It seemed cruel to me at first but I've since seen what people go through with these illnesses and yes, unfortunately, the only cure is death. The more awful the person's state is, the more quickly he needs to die, which is horrible but as far as I can tell, it's the truth of the situation for many. Drawing out the torture for him AND you is not a kindness. You need a life and he needs a blessed release from his awful condition.
I continue to grieve daily and wonder how long I can stand it. But I'm trying to be sensible. When everyone says "Take care of yourself" part of what they mean is "Lay off. He has a dreadful illness and crucifying yourself to make him live longer or 'more happily' won't help." This is the most painful thing I've ever lived through and it is the same for my hubby, but -- people can die in many protracted ghastly ways. If they no longer have the use of the one thing they have relied on all their lives -- their minds -- imagine how frightened and confused they are, every minute. I remember seeing one patient, an elderly woman, clutching a bald baby doll. Every few minutes she would start screaming in absolute terror. One of the nurses would go over and touch her and talk to her softly until she calmed down. But a few minutes later she would start screaming again. Thinking of the terrible place where she was living in what was left of her mind made me want to weep. I really hope she did not last long.
Hugs to you and may all of us survive caregiving, in whatever way we are doing it. And peace to those who are trapped in a world where nothing makes sense and they have no way of using their minds to escape.
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