We have 6 children living close to us. In August 2023, we moved closer to them at their request so they could "help" us as my husband has Vascular Dementia. They rarely call to ask how he's doing, or how I'm handling caring for him. I finally "lost " it and complained how difficult the last 18 months have been for me as his 24/7 caregiver. So they got together and decided that I should sell our home, get rid of our dog, and move to Assisted living with him. I am fully independent and competent. He doesn't qualify for Assisted living. He requires memory care. I've been diagnosed with Lymphoma and can get exhausted. I have PTSD related to all the trauma as the children informed me that because I complained about caring for their dad, I've lost my family. Only 2 of my sons and a daughter in law are supportive. The rest of the children won't call me or let me see my grandchildren. I love my husband and took excellent care of him while he was here with me. His agitation increased and he was becoming violent and it wasn't safe for me to be alone with him any longer. While he was home with me they visited with him twice in 18 months. They've been visiting with him now that he's in the facility and think they know enough about him to take him out to visit with family for a Barbecue, etc. , without my presence. Recently he's been put on medication for anxiety. He experiences sundowning, doesn't know how to pick up a sandwich, needs his food cut in small pieces, forgets there is food in front of him, doesn't do well with excitement or loud noises, rarely communicates, and needs assistance in the bathroom, etc. They think that because he's comfortable when they visit him at the facility, he'll be fine to go for an outing and needs a break from the facility. I'm all for him spending time with them outside the facility, but they need to understand his needs to be comfortable. I don't think a surprise gathering with 6 of his kids, their spouses and the grandchildren is a realistic plan for a happy outing. They haven't asked me for advice and think they know better than I do, what his needs are. If I restrict their ability to take him for an outing, they'll start a war with me, that I can't handle right now with my anxiety. They don't respond to any text messages or voicemails from me. I love my children and miss them terribly. But I've been disowned for admitting him to memory care. I miss my husband. We were married for 31 years. I've been his caregiver for 8 years as his Dementia progressed. I have a hard time getting myself to go visit with him and feel so guilty for only going twice each week. I tried to be the best mom, they always said I was. We always had love in our home. I'm trying to understand and I know that losing their dad this was is so very difficult for them. I realize that I shouldn't have complained a few times that I did about how difficult it was to take care of him, but I never showed impatience or frustration to my husband and am proud of the way I took care of him. It sounds silly, but if it wasn't for my service GSD and my best girlfriend, who's been an angel, the emptiness would be unbearable. My son's are supportive but extremely busy with their jobs and families. I understand that and don't want to be a bother. I'm the mom and supposed to be strong for them. I wish someone could explain all this to my heart.
I have a friend who allowed her kids to take over her life. She now lives a hr away from friends with no car. She is 74.
I say you had every expectation that expressing how difficult caregiving can be to your children about their dad whom you love so much would result in maybe your feelings being validated, or at least some sympathy, not disowned! Don't blame yourself you had no fault in any of this. I hope the staff decide it's not wise medically to take him out.
I would let them take him as much as they want, they will find out how very ignorant they really are.
Hopefully it is not to damaging to your husband to educate them on the reality.
You have done wonderfully for and by your husband, now it's time to take care of you.
May The Lord give you strength, courage and healing for this season of life.
I agree that he seems fine to them and well enough for an outing. But they don't realize that he seems well because he is comfortable and feels safe where he is.
I would put in writing your instructions as to how they should handle visitors,. And if there is anyone you want not to visit that should be in writing. If you want supervised visits you can specify that so if anyone shows up the facility can contact you and if you can you can meet them.
I know how you feel and what you are going through I hope things are resolved.
Edit. I see you’ve already done this.
My husband is in memory care now with many of the same issues that yours has, so it's easy to put myself in your place and try to figure out what I'd do if I were you.
First I'd have a talk with the administration at H's facility. I'd be very candid and honest as to how this family got to this point. I assume you pay his bills there and are his POA? If so, you are the boss. I'd ask the management what they'd advise. They've seen it all before. You don't want kids to remove him and not take him back and conceal where he's gone. H may tell them that's what he wants, but he is legally incompetent to make such decisions now, and his children need to know that.
The facility may very well say that it isn't in H's best interest to go out with your children. The facility doctor may sign a form saying that he isn't to be released to them. Check it out.
If he is allowed to leave, you decide if it's in his best interest. I don't think it is. But I also believe that taking care of H for an afternoon or a day or week would open your children's eyes to the true situation. Don't expect them to apologize, though. Tell facility that no one can take him out without your approval in writing EVERY TIME.
You are entitled to be yourself. Everything isn't about H! Being yourself means that you get to express emotion, ask for help (which it looks like they didn't provide), tell them how sick you are and feel, and cry in front of them. If you haven't, do it soon. Drive home the pain you feel. Then do it again.
You are no longer the strong mom, and thats okay. You are beaten down by H's illness, and you miss him terribly. You are deeply hurt that those children you raised together are unkind, lack compassion, and don't understand. Own those emotions and don't let your kids tell you what to do.
In a family I know, the parents have always, since their kids' early childhood, been afraid of making their kids angry to the point of being ludicrous. As if the kids are the authorities when it should be the parents! Don't be like that. Be you. The tired overworked you that doesn't have to kowtow to the kids. You know what? You owe them nothing.
My husband has an estranged grown stepchild. If said person shows up, I already know what I will do.
I'm terribly sorry you're being mistreated by your daughters while you're suffering such loss yourself, not to mention illness. May God bless you with courage and strength to deal with all the issues you face.
I am so sorry that this is such a painful time for you.
I hope I’m not overstepping and I certainly understand your instinct to keep them from taking him out resulting in agitation and heartache for him, but maybe you should let them. Let them see his real condition and perhaps they may get a clue to value the choices you’ve made.