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hillyann Asked October 2013

My mother just called me crying because my dad is being mean to her. They're both in AL, both suffer dementia.

Mom has broken arm; surgery earlier this month for plates and screws. I was there. Mom fell and broke C1 and C2 in her neck a week later. I was there. She shares a large room in ALF with her husband of 66 yrs.....60 yrs. too long. Folks live in NC I live in FL. I have plans to move them to FL (they have refused for 3 yrs.) Oct. 30. Mom is begging me to come get her. I think I'm losing my mind. Only child. Worried about dementia progression as they are both on the decline. Is it too late to move them??? I work (when I can) and have a husband, daughters and granddaughters that count on me too.....I have been commuting the 632 miles every 4 to 6 wks. since 2010 and I'm exhausted.

Appaloosa Oct 2013
My experience with brain damage makes me ask, if your mom says your dad is mean (and your 60 yrs too long comment makes me think it's his way), and she's had a broken arm and a fall that crocked her neck bones, have you considered that your dad's dementia might have progressed to the place where he could be physically dangerous? Many very nice people with dementia hurt other people. My sweet little old foster aunt attacked a caregiver with a knife for trying to prevent her from burning down the kitchen. My current caretake-ee hits people in the hospital when they try to give him treatments that hurt. He yells at me and gets physically defensive if I have to physically prevent him from damaging things. It's not his fault, but it happens anyway and is very dangerous. And even if your dad is not explicitly dangerous, two demented and feeble people left to their own devices can hurt each other by accident. You need a place that can keep them both safe and you need to be able to check up on them. A place nearby with separate rooms sounds life a great idea. Hugs to you.

Chicago1954 Oct 2013
What do you mean 60 years too long? I certainly wouldn't make her stay with him. She needs some happiness. Is this your father? You call him, her husband. Take her. Leave him. Some things just can't be helped.

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akdaughter Oct 2013
I agree with moving your parents to an ALF close to you. If the money is there, they could have separate rooms. My mom was 2 hours away and I was driving 2 to 3 times each month before I moved her to my town. She was disoriented for a couple of weeks, but now she doesn't even remember the previous facility. Visit some AL facilities in your town and talk with residents and staff. Not all facilities are good with dementia residents. Choose one that has residents at a similar "level" of dementia as your parents. Make sure they have plenty of activities to get your parents out of their rooms and busy.

hillyann Oct 2013
It really does help to vent on this site. Unless you are in this type of situation, you really don't get it--including the black humor! I have been in a state of inertia for a few weeks now; an emotional hangover where I am just drained. Thank you for writing, it helps to know that I'm not crazy :)

IsntEasy Oct 2013
You'd be surprised by how many couples take the opportunity to separate when care issues crop up.
I've seen many a spouse given a new lease on life by their partner's need for care (or vice versa). Couples that have slogged on for years and years in an unhappy marriage. Then, one of them has care needs that differ greatly from their partner and it's the spark that allows them to act. In the community where I work, we've had situations where we've gone to great lengths (at the request of their children) to keep a couple together, only to have the wife announce that she wants her husband moved to skilled nursing while she stays put. It's not unusual.
If your parent's finances allow it, leave dad where he is (maybe in a smaller, less expensive apartment) and bring mom to Florida. If the money's there, why not?! It doesn't have to be a legal separation. They can just live apart.
I'd meet with an elder law attorney to make sure everything's in order first, then just do what works for your mom, with or without dad.

Zoolife Oct 2013
Hillyann, So sorry, I know you're losing your mind! I'm an only child too, have two with dementia and live in Texas they're in Virginia and refused to move here about 4 years ago with I had beautiful condo for them in assisted living 3 miles from me. Last month I went back to care for them within one week my employer fired me. I left them in better shape then I found them I'm home in worse shape than I left, no job, insurance with medical problems of my own.

Bottom line I've been told by friends and professionals is I've gone above and beyond, it's time to care for myself. Being an only child that's hard when it's our folks. My parents are very difficult always have been suborn, angry, non of my fathers sisters will help or even answer my calls. Hillyann, there really is little at this point that can be done. Sure you could go get your mom bring her to your home but how will that effect your family. Can you maintain care for yourself, husband, children plus your mom. What if she gets to your home then wants to go back because she misses your dad. Dementia changes from moment to moment it's a horrible struggle. It's OK to take care of yourself, I'm working on learning that now too! You will be left it's up to you as to what you learn from these situations. I struggle on a daily basis I've been back going on 3 weeks still dealing with the mess my life is and there problems. Everything I put into place for my folks in home care they've undone then said the agency is lying. My dad is a narcissist it's always someone else's fault. I can't deal with them the agency knows what I've been dealing with they are supportive of my taking a break away from them. Continue to vent on this board it's helped me. I know where you're coming from take care of yourself as best you can, do what you can for them than turn the rest over to God as you understand Him! Bless you on your journey!

hillyann Oct 2013
Thank you both for your response. This is such scary territory and I think I was in denial for so long about the depth of their dementia. They fooled me and a housekeeper for a long time while they were in their home. Do I need to worry about my Father being so mean? I guess the ALF has seen it all before, but I get this weird "please don't judge him" attitude. He was a great man before this awful disease.

NotHisFault Oct 2013
I agree - move them close to you. The move will be traumatic at first for your parents, but they will adjust and will forget where they were previously. My husband has no short-term memory and very few long-term memories now, so he lives in the moment every day. When he was in a rehab facility for two weeks recently, the first week was a killer - but he adjusted after a week. Your parents will adjust to their new ALF and you will be more at peace. The whole move will be hard on you, your parents and your family - but hang in there. It will be worth it and they will adjust.

rowan8041 Oct 2013
If they are both suffering from progressing dementia I would say go ahead and move them. I've had a lot of experience working in ALF's and one thing I know is that it won't matter what state they are living in. With dementia, often new memories don't form, so their comfort zone is in the past, and in their heads. I'm not trying to sound cruel, but that is just the way it ends up. In later stages they won't know where they are at all, and your presence will be a comfort because you are a solid memory in their heads. When you visit, take the time to reminisce; this often brings comfort to the elderly with dementia. Get them into a nice ALF near you, and make sure it's a place with a routine schedule, and try to visit them routinely. The best thing you can do for elderly folks with dementia is allow them to enjoy their memories, visit them often because recognizing family makes them feel grounded, and to have a routine. Even if they don't remember from day to day what time lunch is, or naptime, etc. their bodies often get used to the routine and it lowers their cortisol and stress levels to just be doing the same thing day in and day out with periods of activity when they are lucid or feeling up to it. Keep your chin up - it's never too late to move them to another ALF, and I've seen couples get separate rooms in some facilities which will supervise their visits to each other - look into it, call around a bit, and see what can be done about keeping them together but SAFE.

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