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It's getting harder to care for my husband who has dementia. Next Friday, he is scheduled to go for a physical which is required before he can go to a memory care unit. I feel guilty about making the decision to move him there, but it is a constant struggle trying to get him to take a bath, wash his hands, brush his teeth, blow his nose, dress, get up and out of bed, take his meds, etc. Lately he's been very gruff, uncooperative, sulking, non-verbal at times, and has tried to hit me and throw things at me.

But even if the doctor says that it is a good idea to get him in there, how do I explain it to my husband? Or don't I?

How do I get him there? Just take him by car, and more or less, drop him off?

I've heard that people have been told to NOT come to visit or talk with the patient for the first 3 weeks. Why? What if it is not a good fit?

Thanks for your insights.

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From your description, the time to move him is now, for your safety it could have even been earlier than now.

If you haven't already, if I were you, I would write an email to the doctor succinct Lee outlining your problems with care taking your husband and why you can no longer have him at home. Some doctors are reluctant to recognize the needs of the caregiver and the impending inability to care take. But you should not have this discussion IN FRONT of your husband.

How do you tell him? You don't. On the day of placement, you take a trip. If it is a memory care facility, they know what they're doing with. Once you get him through the door, even if they have to help you, he's in. You don't have to drop him at the door. You can certainly go in with him. You will have clothes to take (and usually they will need to be marked if you haven't done that already). And there is the issue of his medication, which I will write you in a separate post.

You may be asked not to visit for 2 or 3 weeks. This is generally to help the staff help him do what they euphemistically call "settling in". In truth, they are usually agitated from the move and when they see you, they believe you can be there to take them away. Each patient is different. When we placed my dad, we went back each day for the next 5 days but we gradually detached from him so that we watch over him but did not speak to him. We let the staff go about their work without "helping". In all fairness, they will have to "learn" your husband and the torture for you, as the onlooker, is that they won't do everything the way you do. Don't expect them to necessarily listen to your evaluation of your husband or how you think you should be cared for. You see, they think they know what they're doing. So, pick your battles carefully, and only interject when it's truly a matter of safety.

After those first few days, we did stay away for another 4 or 5 days, but then my mother couldn't stand it any longer so we went down. We had to place him at a facility nearly an hour from home, up and down a very steep pass. My mom's age was 76 & 77 while he lived there for 1-1/2 yrs, but she's visited all day long every other day, her main "job" being to feed him because he couldn't eat by himself. I was working so I generally went about once a week, either with her or by myself on an off day.

Feeling guilty about placing him would be the same as feeling guilty about him having the disease. You can't. If he has tried to hit you or throw things at you, you are already at risk and past the point of no return. I know how sad it is, but you must think of your safety right now. After he is placed, you will be in a better position to be his wife instead of his nurse, and oversee his care from a place of rationality rather than exhaustion.
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The time is clearly now. And there is no point in trying to explain it to him, he's not going to understand and it may well agitate him. I'd make arrangements to take him there during mealtime and to dine with him. I'd explain to him that 'we are going out to lunch' or whatever the meal is. Eat the meal with him and then get him distracted by something so you can leave. If he has a little memory or needs some pacification, you can tell him he's at rehab until he gets better or a hotel. Personally, as a dementia care professional, I don't like the no visiting for 3 weeks. It all depends on him. His placement there is going to be difficult both for you and for him, but it needs to be done. He may find visits from you reassuring, or he may get very upset every time you leave. The facility probably wants to avoid the latter and any acting out behavior he may exhibit at that time. What do you think his reaction will be to you visiting and then leaving? If it will be a huge drama, based upon how he currently acts about everything else, then the three week separation may be helpful in settling him. Then when he is settled better, you can visit.

I think the most important thing you can do is to find a way to not feel guilty. You are not responsible for him having this disease. You have done all you can for him. It is time to admit that and go on. Easier said than done. What helps me during such trying times, I've had dementia and deaths in my own family, is to practice gratitude. I am grateful that there are places for people with dementia to go that are specialized in their care. I am grateful that, after a little while, I'll be able to visit and still see him. I am grateful that the burden of his care is going to be lifted from me. I am grateful...... My prayer is that you feel at peace.
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This is a tough decision to have to make and my thoughts and prayers are with you. You need to ask yourself what kind of life is he having now. It is all about a quality of life not quanity. When chosing a place make sure you are up front about his needs and ask them what their activity program looks like. Do they take an extensive intake history on him upon or even before admission? We have come to learn that past routines provide comfort. We need to know as much about the person as we can so we can travel this journey they are on with them...meeting them where they are not where we want them to be. Make sure you find someone who can take care of the whole person, physically, mentally, spiritually...it is important to ask staff to patient ratio...what is their discharge criteria...what would make them discharge him? Do they do all the way through end of life hospice care...do they offer support groups? What is their staff training like? Lots of questions but very important to make sure it is a good fit for both your husband as well as yourself. I hope all goes well and you make the transition without to much difficulty. I am not sure about their policy of not visiting for the first 3 weeks...I am a memory care professional and I have never asked a family to stay away...I think the visits help with the transition making it more successful. Here at our facility we ask the family to come to a meal with them and attend activities with them. It gives much reassurance and helps to continue that life story. Many blessings for a successful next step on your life journey.
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My MIL went from AL (Assisted Living) to the memory care unit because even with an alarm on her she still managed to get out all the time and wander the parking lot looking for her car. In AL they had 2 or 3 staff members on duty for 3 hallways. So if no one was by the doors or elevator when the alarm sounded, they would not be able to distract her or re-direct her (no easy task in the best of circumstances for this stubborn, strong willed woman) before she was out. And once she had her mind set that she was leaving, boy was there a battle to try and change her mind. She is NOT an easy going woman in the best of times.

They moved her to the locked unit and we did not visit for a week. They told me that most of the residents spend a lot of time the first week standing by the door waiting for an opportunity to get out the door. She did call us twice the first week to say she had been incarcerated, or was being held against her will, and then she settled in. We kept waiting for the other shoe to drop, but she was happy to be there. Unbelievable since for the past 6 months we got calls from her every few days (and middle of the night) telling us she needed a ride home, etc., and she had lived in that room for 10 years. After the first week in the memory Unit we didn’t have another eruption until Christmas.

No, do not drop him at the door. You will be the one constant he knows when he goes to his new home. We were asked to help with the move (but as antagonistic as she had become, we told the staff, “No thanks. You get to be the bad guys here.”). What we did do was choose what items she would take to the new, much smaller room with her. We picked some of her familiar things to let her know that she was safe and where she belonged.

They also have an 8x10 case outside her door for her photo, or a photo she would find familiar to help her identify her room.

All told, we waited one week to visit. Her sister called her every evening as she has one for months (following a NH stay for a fall, that mentally set her back and from which she never got better), so that was still a constant.

My friend did not visit her own Mom for a month. That was what worked for her.

So let the staff and the social worker guide you. They will say, “It’s up to you,” but tell them you need their guidance and recommendations. Once you do that they will tell you what they think. There is no “3-week” standard. Each resident is different. My MIL is nicer than she has been in a year. She has been in this unit only since right before Thanksgiving. A huge relief for us.

I spoke to staff and social workers right before Christmas asking their opinion about taking her out on Christmas morning for a very low-key visit to my son’s house. I got very worried looks, and “It’s up to you. We don’t restrict anyone.” But I told them I wanted their recommendation. They were going to have to deal with her when we returned her. Then they each said the same thing. “We don’t think she is ready yet. Best to give her more time to firmly understand this is her new home and not give her mind an opportunity to think she can live anywhere else.” That was all we needed. We visited HER on Christmas, rather than take her out.
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More or less drop him off...OMY I do know how you feel...We are on a roller coaster of emotions....I would not just drive up, and kick him to the curb...How he is now..is not the true him..Make the transition..with him...stay with him..as you would have him do for you....If you don't ...when you return home...ALONE...you are going to find...the very spirit of him...and what you shared it gone as well....The things you are getting weary of..and ware you out...will be gone...the house will be silent...there will be no one to care for...no one there at night with you....if you just pull up and drop him off....he will resent you..and when you come back...for a visit....After you realize...how alone you really are...YOU will have had an awakening...of what your life meant..and what he meant...and he will also see exactly what he meant to you...There will be another meeting in Heaven.....you will want to be able to face him...so just do all things...with LOVE...even if you have to leave him in a facility....act in love!
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CarolLynn, what a great post. Terrific advice from someone who's been through the process and managed it brilliantly. Thank you.
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The hardest decision I ever made was calling the police when my husband wandered off in the car (!!!) for the second time in a week. I had him "baker-acted" (a FL law which is really a God-send) into a behavioral facility. After just a few days the social worker there told me he had to go into a secure memory care facility. I was relieved but still felt a bit guilty, but I knew it was best for him and me. I couldn't control him any longer. It was too dangerous for both of us and the general public. I only visited one time during his 11 day stay at the behavioral center because the day I did go, he wanted to leave with me. I had the aide distract him as I darted out another door. It was so heartbreaking....still, I knew I had to do it. I visited several places. Talked to the staff; observed the residents at meals, activities and just wandering the halls. After I selected the home, the staff there moved him from the behavioral center to the facility. In the meantime, I had taken his clothes, etc., over there and set up his room so there would be some semblance of familiarity. The staff suggested I wait a few days to visit, which I did. When I did see him, he was very ill...no one's fault. It was just the rapid and unrelenting progress of the disease. He had Lewy Body Dementia which is very different than Alzheimer's. He was only in the home 11 days...he had to go to the hospital because of a UTI, kidney failure and dehydration. From there he went to a secure rehab center. He made some minimal progress, but after 2 months it was obvious he wasn't going to improve. He had UTI after UTI, a severe, severe, severe "wound" (bed sore) on his tail bone that had been there for quite some time. Eventually, he started bleeding through his catheter and went into the hospital again. In the meantime they discovered what they believed to be lung cancer. Within 2 days he was in hospice and passed away 13 days later. Perhaps if I had placed him sooner, all of this drama might have been avoided, but in reality, I believe this was God's will. And so, I have accepted all of this as that. I don't feel guilty. I believe I did what the Lord wanted me too. I believe it is definitely time to place your husband. Your safety has to be your #1 priority. Found the best facility you can for him. You will need to remain his advocate. I visited the places at different times every day. If I saw something that I thought was not right, I talked to the nurse, the social worker or the aide. They knew I knew what was right and wrong. Be firm but polite. I saw far too many residents who never had a visitor. I worried that perhaps they might be neglected by the staff, but I really didn't see that. If you choose the right place, you can feel comfortable that your husband will be well cared for. Yes, they will do things differently that you would, but they are professionals. They are efficient, and they have other residents to care for. I helped out, especially in the evenings because that was always my husband's worst time. He'd be cranky from being tired and in pain from his wound. I comforted him as only a wife can, but I let them do their job. They appreciated my help, and I learned how to better lift and turn and move him. Work together with the staff, but let them know that you are watching. I never criticized anyone. I just made it clear...firmly but politely...that my husband needed this or that. They understand how stressful this is for you, and they will help you cope if you let them. Ask for updates at least once a week on everything...how much he ate, drank, did, slept...will a doctor see him daily, weekly? You will notice changes far more quickly than they will. Bring them to their attention immediately. I don't blame any of the staff for my husband's rapid decline. They did what they could. So did I. That is why I am at peace. Yes, I miss him, but I know I did the best I could for him. I tried to make his last months the best I could. That's all we can do. the rest is out of our control and in the Lord's hands. God bless you.
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It was a surprise to us that my husband needed to have a TB test prior to entering assistedcare/memorycare. Several days are needed to receive the test
results. Apparently this test is so common for all the people who take care of others that it is generally not talked about. Thought a heads up might help a few folks.
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I don't want to lose my husband to this horrid disease...I don't want to put him in a nursing home, I don't want him to be ill...When I was young..I rushed through this life...holding things TO DO till we retire...those things are never going to happen...Today..he was in a good mood...laughing at our dog...and acting like he was about 11 years old...so...I just went along with it..and Joked with him...made him laugh...again..He used to be a WIZ at cross word puzzles.in the Post.....he could do them in 20 minutes and get every word....with only a few he would ask me..or I would look up....I have been saving them from the paper to give him to do...and he is lucky to get a few words...and get them right...I saw him looking at it..for a long time today..Before he went to be...he sat it on my lil table...he could not do it...I am sure he must be thinking WHY can't I do this???
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Since you are asking the question, I do believe you have already answered it. When it becomes so unmanageable for you, you have to consider your own health and safety. He is progressing into professional care, and when you take him to the memory care facility, the reason you are not allowed to visit is for his time to adjust, as well as your time to get used to him not being at home. So both of you have a time of re-adjustment because this will be the living arrangement until he passes. Accept you have done your best, but NO ONE controls this terminal illness. IT has a nasty way of ruining not only the person inflicted with it, but all those who love that person. Rest easy knowing he will have professional care, you will be able to rest, and then you can visit when the appropriate time comes and he has had time to settle-in. You are doing the best thing for him AND you. My best to you both!
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