After 44 and 1/2 yrs of being together, he has had a difficult time adjusting to being apart from me. I'm not able to take care of him at home any longer, even with caregiving help, going to a dementia day care program and hospice services. 24 hr. home care wouldn't work because he would be looking for me and wanting me to help him. Our children and his close family supported his placement. Our 3 children still say, "Mom, we know that you'll make good decisions." He was better for a few weeks about me leaving the facility, but last night he begged me again, "Please don't do this to me. I just want to be with you." That used to happen a lot for the first 5 weeks. I've been back and forth with hospice saying we (sister, her hub and me) should refrain from visiting for a few weeks (which wasn't a good decision), and now, visit often, but don't take him out too much. His sister, who is beside herself over his decline, is having a lot of trouble, as am I.
Hospice and the facility feel that he shouldn't leave the facility grounds too often so he is able to see the facility as his home. We should try to only take him out to lunch or off the premises once or twice a month. His sister and hub would like to do that more often, and take him to their home, where we spent many fun times. As far as the facility, the grounds are beautiful, as is the facility, and there are ample sitting areas inside and outside where we can relax and enjoy the weather or take a walk. Over the holidays I took a week away to visit family, and they took my hub to their home. On Christmas Day, they took them to a family gathering. It was probably too much, because he didn't eat much and kept his eyes closed on Christmas Day. Today I called hospice and asked for a family meeting with his team so that everyone is on board. I agree that taking him off the premises too much isn't good. He doesn't always recognize the people whom he used to know, including our children and grands. The world is confusing and there is much that he can no longer do, like using eating utensils, seeing and identifying nearby objects, using the bathroom alone (he wears pull-ups), etc.. His hospice RN said that he will feel safer in an environment that he knows and I get that. She told me that family tends to want to do things that make us happy, but aren't necessarily good for our Loved One. We project our wishes on them. I think that's true. We dearly want to give them good experiences and return to our former days of joy, but their world is no longer the one that they knew. It's very hard. I love my s-i-law and her husband. But I feel like I'm between a rock and a hard place, and frankly, they're upset and I am, too. I don't want to destroy our relationship, and I'm lonely and need their support. Any suggestions, dear ones? It's a horrible, horrible disease!
I haven't had her here once.
I want her to come here, but I quickly realized that change is so very hard for someone with memory issues and it isn't fair to take them away from what's familiar. What's familiar fades very quickly, so your SIL and her husband probably don't realize that even their house is no longer familiar enough for your husband to be comfortable there
I now bring my mother Mexican food for lunch once a week, and we "eat out" at her place. I wanted to take her down the street to the place where I get the food, and the staff at her place (whom I trust) said not to do it. They're correct, of course, and she's much more stable when things don't change much from day to day. Even the Christmas decorations at her place stressed her out, but now that they're gone, she feels much better.
Here's how I look at it -- Remember when your children were very small? If you were out and about and walked more than a few paces ahead of them? They'd freak out even if they could see you, and somehow they couldn't bridge that gap and catch up to you. They'd plant their feet and cry, no matter how much you'd tell them to catch up. You'd have to take a few steps back toward them in order for them to be able to catch up.
That's what happens with dementia patients. They can't bridge the gap between what feels safe to them and what is still safe in spite of being a bit different than what they're used to. You just have to stay within their boundaries of what's comfortable, not yours.
Tell your extended family that it isn't kind to your husband to apply their standards to him. He's not the person he once was, and the most loving thing to do is to work within his parameters, not theirs.