Husband has had FTD for 10 years (just NOW diagnosed) I have my own medical issues at 69 and I can't do this anymore. He is different (nicer) to others but abusive (so far verbal/yelling) and so they refuse to "believe" I can't cope anymore?!? BTW the professionals; doctors, social workers, etc all support the decision....the family is absolutely clueless.
You are in the middle of possibly the worst crisis in your life, and these people want to throw you under the bus and stomp all over you after you're flattened by it. Let others comfort you. There are many who will. There's no reason for you to feel guilt after doing what's best for him as well as you.
Good luck. I'm sure you've done the right thing, and I'm sorry you have such a horrid family.
The Association for Frontotemporal Degeneration also has support groups (either virtual or in-person) that can provide you with needed support. God bless you and good luck.
Please have your family read the following because I'm writing it for them.
Hello family of CINDERCYN. I was an in-home caregiver as my employment for 25 years, was a supervisor at an AL, and now am in the homecare business. I can say that in such a long experience I've encountered and been a caregiver to many seniors with every kind of dementia there is. I have seen ones who were adorable and sweet as pie to their caregivers and anyone who came around. Then the second their spouse, adult child, or some other family member came around they turned on them like snakes. Nasty, ornery, verbally abusive and often times physically abusive also. No one believed them.
I remember many years ago long before there was cellphones and people used video cameras with tapes. Anyway, I was a caregiver to an old lady with dementia who was sweet as pie and lived with her daughter who was single with no kids. Her siblings and their kids (the grands) did not believe 'Grams' could ever act the way her daughter was saying. They got very angry when mention of facility placement came up.
I made a plan with the daughter that I'd tell her mother I had to leave a few minutes early and that she'd be coming from work early. I pretended to leave and waited in the other room with the video camera that was stashed there.
The minute the daughter had her keys in the door, the ornery tone started followed by the swearing and berating. Then the client threw her water at her daughter and then tv remote. All the while continuing to swear, threaten, and tell her what a useless piece of sh*t she is.
That's when I came out from the other room with the camera. The client embarrassed and mortified by her own behavior, started to cry and hyperventilate which did not stir my sympathies in the slightest because I'd seen this game so many times. The daughter took the tape and showed it to her family whose thinking was greatly changed by it. I showed up for work the next day and the client wouldn't let me in. In her dementia she was able to remember the day before then turned on me. Her daughter had her placed a month later.
So you don't know what your mother lives with. If you want to move stepdad into one of your homes and take responsibility for him and his care needs, do it. If not, you should really have nothing to say.
You tell them that your own and your husband's life as it concerns his dementia and its management is a private matter you discuss with a team of professionals.
You tell them that you appreciate their concern but that this is a PRIVATE MATTER you do not wish to discuss further with them.
Unfortunately this leaves you without the SUPPORT that honest solid discussion groups can provide you. IF you can possibly access any support group, please do. If you can't, consider trying to form one.
I'm so sorry. This all makes everything so much more difficult.
Actually, I am glad to hear the the Doctors are behind you in this. Just ignore these people. They are not the ones dealing with the day to day things. He is probably very good at showtiming. Do what you need to do for you.
Its really never too early. Actually the earlier you can get them into a facility, the earlier they will except it as their home. When my Mom was in an AL, a man was brought in who tried to escape all the time. I heard one of the aides say "they waited too long".
I never updated anyone. If they wanted to know how my Mom was doing, they could call me. I was POA and I made all the decisions. I am with you that once he is placed to just give everyone his address and stop the updating. When my brothers did not visit my Mom or call me to see how she was, I said nothing to them. They were in their 50s and 60s and they would have to deal with any guilt feelings they have. I have none because I was there thru it all.
Well the simple solution to that is to tell them both that they are more than welcome to take their stepdad into their homes to care for him. And I will put money on the fact that neither of your children will take you up on that.
So get your husband placed so you can get back to being his wife and advocate and not his burned out and scared caregiver.
It's painful what you're going through. I guess I would say try to weigh the feeling of peace you'll have once he is placed and you have your life back compared to the sting of a criticism from someone who has not walked in your shoes. Peace will win everytime. 🫂
You can attempt reconciliation later if you wish, but right now you should concentrate on your own well-being as well as your husband’s. You two are the important ones here, not the naysayers.
THEY are the ones feeling guilty, and they want to dump that guilt somewhere, so they pick you.
You have nothing to feel guilty about. If they weren't in the trenches with you carrying the same load as you, they have NO right to complain.
The family member who gave us the worst time (honestly the ONLY family member to give us a hard time) was my FIL's sister. She lived 10 hours away and had not seen him in 10 years. They talked on the phone "regularly", but she had the ability to literally hang up on him and not talk to him if he upset her or was verbally abusive (and she did several times).
When we moved him to SNF, she was VERY vocal. We were abusing him, he was going to die in there (Well technically yes, but it wasn't causative, it was just where he was), the people there were not taking care of him, he was being abused. Nothing we said or did was ever enough for her, nor could we ever convince her it was necessary.
At first it was really hard. But after a while we adopted the "those who matter don't mind, and those who mind don't matter" mentality.
Family who hasn't been in the trenches - do not get a vote.
That is always true. The ones who do none of the caregiving are always the ones with the most to say and have the most opinions.
I don't mean to sound crass, but after a spouse dies, the in-laws will show their true colors. It happened to me.
Your safety comes first and foremost.
Join a support group and get your support there.
Perhaps ask yourself why their 'opinion(s)' of you matter so much to you?
When you know or understand what is driving your feelings to somewhat be sucked in (or value their assessment / feelings / input over your own experience), you will be more able to separate the automatic response (feeling bad 'believing them' and/or wanting them to appreciate / support you ... you give yourself some S-P-A-C-E in-between what they say and how you feel about it. This space gives you some time to 'reset,' 'shift' and remind yourself that you are a whole individual person who deserves respect. And, you give this to yourself.
When you become aware in the moment RIGHT BEFORE an automatic response, you are empowering yourself as a whole, deserving person of respect, love, and appreciation. You take a deep breath and give yourself some self-love.
Practice what you will say to yourself.
You do not owe them anything, not even a response.
You might want to look at them in acknowledgement ... and/or walk away... doing your deep breathing.
You remind yourself of what a good person you are ...
What a good wife you've been for 10 years (of this situation)
You remind yourself that you have your own health care needs and that you deserve to take care of yourself.
You do not try to convince them / others of anything.
Like a horse with blinders on, you look straight ahead (emotionally) and believe in yourself and know in your gut and heart that you are doing the right decision for you and your husband.
Keep acknowledging yourself.
Find support where you can get it.
Do not subject yourself / listen to others who do not support you.
Gena / Touch Matters