The caregiving doesn't end with placement in MC.

Bowerbird

My DH has been in MC for about 1 1/2 weeks at one of the only standalone mc facilities in my city, which happens to be near my home. I keep reading that caregiving doesn't end with placement and that is so true. When I go to visit him, with a day or so off between visits, he is inevitably lying on the bed (he doesn't participate in activities), with his shoes all wonky because he tried to put them on himself, possibly having refused the caregiver's help (laces removed or knotted, tongue smushed up into the toes of the sneakers), no socks, no jacket even though he gets cold easily, the bedsheets awry, unshaven. So I get his socks on, fix his shoes, shave him, brush his teeth because I can't tell if they've been brushed, comb his hair, put on his jacket. It is a labor of love to be sure, but I guess I'd been hoping that all of that would be done, so I could just enjoy being his wife. I also wonder when I take a day off for my mental or physical health, if he just walks around like that because no one fixes his clothes.

I like this MC and it gets great reviews, but I can't help but wonder if this is the right place for him. If I moved him, would it be the same situation? The caregivers here are never on their phones, which is a plus, but they are busy.

He is unhappy there and only ever wants me to be with him. I know it takes time to adjust and moving him seems as though it would more disruptive and probably he wouldn't be any happier in another facility. I spend time looking on the Internet for other places, but nothing seems any better.

I have difficulty when I leave for the day because the techniques suggested do not work with him (like slipping out when he is distracted). I've told him I have an appointment and he wants to know with whom. I suggest he lie down and take a nap after lunch and he resists because he knows I will leave.

I am just venting here because it is frustrating and painful. I think I am starting to adjust somewhat, but it pains me that he is not and may never, at least until he is at a less aware stage during this terrible progression. I consider him moderately severe, but do not know his actual stage.

Jeff H

I would talk with management. My father was in MC for about one year. They watched over him, ensured he participated in group activities, and checked on him when he was in his room.

wose

I don’t have any sage advice, just a giant hug. I’m so scared for this step. I know it’s right around the corner. It’s just so sad and difficult for you. Try to keep reminding yourself you are doing your best and you’re keeping him safe.

annie51

This is so hard for you. I’m so sorry you’re going through this. Have you been able to talk to the caregivers themselves? I got to know my DH’s main caregivers and when I visited I asked them a lot of questions about how he did that day or mentioned issues that I saw. They were very willing to share information each day, good or bad. After a while they automatically gave me a quick update when I came in. They seemed especially proud to let me know when they had a tough time with him but worked through it. I felt like getting to know the caregivers well was a benefit. It does seem like they’re dropping the ball some.

tucson anne

Men and memory care…I was curious about whether there were studies about whether men have more trouble adjusting to memory care and it turns out the answer is, not surprisingly, yes. Many reasons, but chiefly I think most men aren't as social as women so don't make some of the contacts women do; the activities are things that women may like (my husband never colored, painted, played bingo); the men are more dependent on their wives by the time they need memory care. I had the same experience as you when I tried my husband in memory care in August; I gave up and brought him home where he is happier but I am not. When you read through the wonderful comments on this site, you will find that it seems women adjust; men struggle. Good luck and stick with it; I've only postponed the struggle.

Bowerbird

https://alzconnected.org/discussion/comment/266060#Comment_266060

It makes sense to me also that men have more difficulty adjusting to MC. I have toyed with the idea of bringing him back home, but as you say, it only postpones the inevitable and I had huge worries of what would happen to him if something happened to me first. Also I like the idea that he is under the care of nursing and the Medical Director. Having him home was taking its toll on me and he was not doing much at home either, sometimes expecting me to find something for him to do.

White Crane

Hi, Bowerbird, I'm sorry your DH is having such a hard time adjusting to MC. It takes time. For us, the first few months were the hardest…for both of us. I had to learn that when it was time for me to leave to tell him I had to pick up a prescription or some other fiblet and then leave without looking back. It broke my heart to hear him calling after me but if I stayed and kept making excuses for leaving it just made things worse. The aides assured me that he was fine after I left. Sometimes they would take him a snack or other distraction that helped him focus on something else. As to being dressed properly. It could be that he is fighting the aides about dressing. Talk to the aides. If you are not satisfied with their answers or how your DH is being treated, have a talk with the administrator. You said he wasn't shaved. Oh, my, that is a sore spot with me and one I have finally had to decide wasn't worth me getting all upset over. The aides shave him when he will let them. So many times, he won't let them. Like you, I would shave him myself…or try to. Sometimes he would let me and sometimes not. It finally got to be too much of a struggle. They know my wishes and they try but if he won't cooperate, then he looks scruffy for a while. I wouldn't worry too much about it. Get to know the aides and the administrator and the director of nursing (DON). Talk to them. Ask questions. Let them know you are his active advocate. At my husband's MC, I am on a first name basis with most of the staff. We've gone head to head on a few things ovover the last two years but I am his advocate. May you find some peace as time goes on. This is a huge adjustment for both of you. Sending hugs.

Brenda

BPS

The aids ask and encourage my wife to take part in activities but she usually refuses. They don't force her to do anything the ask and encourage and if she refuses they try again later. She likes most of the aids and smiles when they come into her room. The aids don't seem to worry to much about if they have matching shoes or anything like that for the ones that can dress them selves. As long as the resident is happy they let those things go. I also tell my wife when I am leaving. I tell her that I have go do what ever and that I will see her a little later. My wife mostly stays and eats in her room now. I thought how boring that would be but she has no idea if she has been awake for 10 minutes or 4 hours.

Bowerbird

https://alzconnected.org/discussion/comment/266069#Comment_266069

Thank you so much for responding. I appreciate your input because I'm thinking that your experience is similar in some way to mine, but you are further along in the MC journey. I think he probably is fighting or refusing the aides' attempts, but I guess I do not understand why they do not go back to him later and try again, other than that they are busy. I have spoken to the admins, including the Nurse Practitioner, because the first time I saw my DH at the MC after leaving him there for a week, was a disaster, which I posted about. I contacted two of the admins, figuring the squeaky wheel gets the attention. I guess I don't want to always have to be the squeaky wheel, but I need to get over that. When he was home, he would not let the aides do any personal care with him, which exhausted me; the same thing is happening at the MC, but I am hoping that with time he may get over that.

TrumpetSwan

Agree with the topic of your post that caregiving does not end with placement. Not at all. Not in the slightest.

You have introduced more people into your life in very personal ways. Of course, you are going to be overlooking what they do and, likely, not always approving of what you see. As you settle into the new dynamics of MC, it is alright to make notes of things you see that seem off, dates and times, etc., and decide if there are trends in gaps of care that you deem worth raising to someone such as the DON or Executive Director.

If you do speak to the staff, well, then there you go down another road of additional corrective actions and more follow up on what was done. It is exhausting and sometimes it seems endless. Only you can decide if the gaps become enough to move to another place.

I have many of the same questions you mention. Getting to know the staff is good, but as soon as I get to know someone they are gone and that bond is broken. The turnover in staff is high, and I cannot keep trying to make friends with new people all the time. I have thought about moving my mom to another facility, but then just think it would be way too disruptive for her. I also think many of these facilities hire from the same pool of local employees, so the only thing that would change is the physical structure - not how the care is provided.

You are doing the best you can. These are incredibly difficult situations. It would not be perfect if they were at home either. Give yourself some time to settle in. Keep an eye on things. Allow yourself some time off between visits to unplug, breathe and pace yourself.

Bowerbird

https://alzconnected.org/discussion/comment/266076#Comment_266076

Thank you, this is so helpful and such good and welcome advice. It can be overwhelming thinking I have to keep track of all the gaps all the time (it's only been less than 2 weeks). No one in a facility can do what we did or would do at home. It is so difficult to tear myself away from there and not visit every day, but my sanity and physical well-being demands it.