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?
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.
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.
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.
At one point, I know I will have to place my husband in Memory Care. I can not do this alone, with help, or afford 24/7 care. This house was not built to be turned into a free standing mini medical care facility. This is a 100+ year old residence and as such, not easily converted into what my husband will need as far as long term care is concerned. I can't find anyone to rennovate the powder room into a wet room, which would be to outfit it with a shower and tiling up to the cealing and a center floor drain, once he has to be moved to the first floor for safety reasons. We're in a rural area-so what many may take for granted, can be a challenge to get done here. What I'm trying to point out, is how prepared is your living space to even consider what will be very challenging care giving to someone who you will not be able to move on your own, to bathe easily, dress, and keep from wandering. Also, as the disease progresses, there may be other issues such as yelling, screaming. How close are your neighbors and would they mind these out bursts? You didn't mention if you're working, which adds another layer to this. Also, you will have to figure out how to help keep your husband's mental state active, and what works for one person may not for him. Another aspect to think about, is when there's an emergency with your husband-how fast do the EMTs get there? In long term care, I'm pretty sure it's faster and they probably have a direct admission for all their patients-which also means faster hospital care and much less time in the ER its self and right into the hospital.
I am in a number of online Zoom dementia support groups, and it seems that when loved ones are place in long term care, memory care, they tend to stabalize, seem to be better overall. Nothing is perfect, and this may be all there is now to deal with dementia. I am in agreement with the other posters here in letting your husband stay in Memory Care.
Best of luck to 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.
You said he is doing fine, the issue seems to be you giving up your caregiving role and not accepting the reality of the situation, he cannot come home to your house, he has a new home, let him acclimate himself.
Walking around alone what is wrong with that? My step mother does it all the time, she is getting exercise, talking to people and enjoying the activities.
If you cannot accept what is best for him and move on with your life, a therapist may help you through this transition. It appears that you cannot give up the role of caregiver. He is getting more attention than 99% of the people in MC who cannot afford a special caretaker, ie babysitter.
Good Luck.
I agree with Lea, visit more on week ends when there's less people.
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.
Too bad you can't get someone to stay on the weekends with him.
Prayers
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.
The responses saying that you can visit and then they forget you were there so it doesn't matter are so wrong. There is no way to guess what they are feeling. Care situations in memory care are not good for dementia residents. I don't think in my lifetime this problem will be solved and it makes me sad for all the the elderly who deserve better.
Here are 20 questions to ask yourself to help you understand why someone with dementia might get anxious, angry, lonely or aggressive:
What would you do if you had to walk a mile in their shoes?
How would you react if your children took your car keys away and told you couldn’t drive anymore for no reason?
How would you react if people told you it was daytime when you knew for a fact it was the middle of the night?
How would you respond if someone told you strangers would be coming to your house where you had lived alone for decades to take care of you because you couldn’t take care of yourself?
What would you say if someone came and took your dog or cat away?
How would you react if somebody kidnapped you from your home and took you to a prison full of sick and crazy people?
What would you do if the people in the prison ordered you to sit down when you wanted to stand up? Or made you stand up when you wanted to sit down?
How would you react if you wanted a drink and were told you couldn’t have one?
How would you respond if you loved peace and quiet and you were now surrounded by loud noises, and strangers who shouted, groaned and talked nonsense all the time?
How would you react if people less than a quarter your age talked to you like you were a two-year old?
What would you do if you wanted to escape, but all the doors were locked and you didn’t have a key?
What would you do if you weren’t allowed out – ever?
How would you react if somebody tried to force-feed you?
What would you do if somebody made you swallow pills you knew would put you to sleep when you wanted to be awake?
What would you do if a stranger tried to take something that belonged to you? What if they managed to get it and they wouldn’t give it back?
How would you respond if someone told you weren’t allowed to go into your own room? Or open a door? Or close a drawer? Or pick something up? Or put something down? Or go outside? Or go inside? Or do whatever you wanted?
What would you do if you were trapped, and you cried for help, and someone put you in a chair you couldn’t get out of and said you had to stay there?
What if a stranger wanted to come to the bathroom with you? What if he tried to undress you? What if he put his hand between your legs and under your arms and under your breasts?
What if you said you didn’t want to have a bath but people took your clothes off anyway and then they forced you into the bath and told you to calm down and be quiet?
What if things like this happened every day? How would you feel?
How would you express your feelings if you couldn’t find the words?
What if you did find the words and no one listened?
What would you do if you were alone and powerless? How would you react if you had no control over your own life? What if you felt incompetent, invisible and inconsequential?
What would you do?
God bless you.
Be honest about the level of care. 6-7 hours per day is not 24 hours. He needs 24 hour care.
If you can afford that and don’t mind a stranger in your house with you constantly then and only then would I even consider it.
He had been in and out of rehabs for a period of over 5 months prior to moving into the SNF, and as "luck" would have it, he had to be in two different ones in that time period.
But that wasn't really like a straight line. It went more like this.
1. Sent to hospital for 7 days
2. Discharged to rehab for just over 2 months
3. Discharged home - stayed for 106 hours
4. Back to hospital for another 7 days
5. Discharged to NEW rehab for just over 6 weeks
6. Discharged home for less than 24 hours (19 to be precise)
7. BACK to hospital again for less than 24 hours
8. Back to second rehab for the remainder of the time until discharge to SNF
When we met with the Charge Nurse and Social Worker at the SECOND care plan meeting (this was NOT mentioned during the first, which was only a couple of days after his arrival), one of her concerns was that he had dementia and they wanted to assess him for it. We were on board fully because we had been wanting the same but his primary doctor did not share our mindset.
We mentioned that we had noticed what we considered a fairly significant decline in the last 6-8 months. She asked about the above timeline and when we shared she said the following:
"I fully believe that he is in Stage 2 Dementia, even without the assessment, based just on my own observations. With that said, with all of the upheaval and moving around he has done lately, if the assessment bears out dementia, it would not be shocking to me that he has shown significant decline in that period based just on the moving alone. Each time you move someone with dementia, it is confusing and distressing for them. Which in turn exacerbates their symptoms. So it isn't surprising to me that he has seemed worse in that time period given the circumstances."
She went on to say that once he settled in there, they would give him the assessment, because they wanted to let him adjust a bit more to his surroundings before administering the assessment. They didn't want to run the risk that his previous history of self-isolation at home (self-imposed home bound to some extent) and then self-isolation at both rehabs for the most part as well as so much moving around would skew his results.
In other words - If you bring him home - you are running the risk that things could most certainly get worse - at the bare minimum for a period of time as he readjusts to being home. Even when someone misses home - there is always a period of readjustment -even for someone with full mental capacity.
I think you know - this is more about grieving what was and what you wish with all of your heart could still be. But you know in your head that it is best to continue on the pat that is established. For both of you. Where he is, you can continue to be his wife and enjoy your time together in that capacity.
Is it the onky way to make the weekends less 'horrible' for you & him?