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Mom has dementia and dad is struggling...

 
 
Draccy
 
Thu 5 Jul, 2018 11:47 am
My parents have had a long, happy marriage of 50+ years. But a few years ago, my dad noticed my mom was acting strange, and learned she has something called Frontotemporal Dementia. It presents kind of like Alzheimer's. She's now lost the ability to speak and walk, and there's no way to tell how much she understands or if she recognizes us.

My dad, who's almost 80 years old, tried to take care of her at home with a part-time caretaker. But my mom is very heavy and just the physical element of moving her around the house became impossible -- more than once, neighbors had to come help pick them up off the floor. We urged him to seek an assisted living facility for her, near home, so he could visit every day but leave the difficult tasks to caregivers.

He did just that, and she's been there a year now. The care facility is OK -- not negligent or anything like that -- but understaffed, and some people there are good while others are marginally competent. I understand this is very common in assisted living homes in big cities now because of the large elderly population and the low pay offered to caretakers.

Anyway, my father doesn't think they're up to the job -- and indeed they have trouble with her bedtime, etc., just physically moving her around -- but he also doesn't trust them with anything. Feeding her, exercising her, anything. He spends hours each day there and basically functions as a caretaker there.

He's having trouble -- he gets very little sleep, doesn't keep up with stuff at home -- papers and junk piling up, although at least he's paying his bills -- and worst of all, he's emotionally fraught. He gets angry at my mom for not listening to him, or for not being able to stop sucking on her fingers, and things like that. He keeps saying he thinks she's doing it out of spite, or that she doesn't respond to him because she's depressed. He sometimes yells at her or yanks her hand from her mouth a little too roughly, or yells at the people who work at the facility if he feels they're not doing their jobs well.

I've told him he should go to a support group for people who are caretakers of family members, and he says he tried it before when his mother had Alzheimers back in the 90s, and it didn't help him. I can't get him to do any self-care. My parents' friends and even relatives have mostly abandoned him.

My brother and I live in the same region, but as we're bringing up kids of our own and work full-time, we aren't able to be there enough to really make a day-to-day difference for our dad. We visit frequently, we invite him to outside events to help him get away when he can, but it's just not enough.

As he ages, my dad is getting more exhausted and physically frail, and I noticed he's getting a bit forgetful as well. Just normal aging.

Sorry this was so long. I guess what I'm asking is, for someone who resists self-care options such as support groups, and who takes on huge burdens because he doesn't trust caregivers with his loved one -- am I missing any forms of support I can try to find for him? I'm thinking this is an impossible question but I needed to put it out there. Thanks.
 
jespah
 
  4  
Thu 5 Jul, 2018 12:38 pm
@Draccy,
Hey,

First of all, I am so sorry this is happening to your family. Dementia of any sort is just plain cruel.

Here's a question: is it possible/allowed for you and your dad to hire a secondary part-time caregiver? Maybe even the person who was there before, if they're available. This would be (presumably) someone your father trusts and likes, who's sharp enough to notice if anything is amiss. That person could initially come along with your dad a few times until he becomes ready to let that person come on their own. Set up a day or two or more per week for that person to hang out with your mother for, say, a morning.

With free time, your father would be able to do some self-care, even if it's just a nap (I am not knocking naps! Smile).

Even if you couldn't hire that person back, maybe there's a college student in the area who needs to make a few bucks. If there's a nursing school in your area, so much the better. A lot of students would love a little mad money.

And if the place kinda, sorta doesn't allow it, there's no law that says your mother's friend can't stop by, or your dad's. And who needs to know that person (I'm talking about this student or caregiver or the like) gets paid afterwards?

Your mother is your father's whole world. Even if her illness was something else, if it's terminal then he would also need to break away on occasion.

Also, see if you can visit a bit more often. Are your kids able to write letters to their grandfather, or draw pictures for him? I bet he'd like some unexpected things in the mail that weren't bills, to tell him that all of you love him and that he matters to you.
Linkat
 
  4  
Thu 5 Jul, 2018 02:39 pm
@Draccy,
I am not sure about his and your family's financial situation. But is this the sort of assistance living situation where you can have your own apartment? One that will provide the level care of each individual as needed?

My husband's grandparents went into such a situation when his grandmother had dementia and cancer. His grandfather was not able to give her the care she needed (even with someone coming to the house - similar to your parents' situation).

They went into this assistant living where they had a small apartment - his grandmother got the full care and he had limited care (like cleaning the apartment and ability to go to their cafe to eat). This way he can be there for your mom but they can take care of all the stuff such as cleaning so he is not as exhausted.

He also could attend support groups there - even in a sense of informal support groups where he finds some individuals on his own that are going through a similar situation - it would be in the form of say attending a card game, listening to music or other social opportunities that they would hold in such a facility. That sort of support where you make a friend or two that is in a similar situation where they would talk together rather than the forced type of support group - may fit his personality better. Also not being so tired and worn out would help him mentally deal with your mom better.
PUNKEY
 
  4  
Thu 5 Jul, 2018 04:17 pm
Im sorry for your plight. Been there, done that. The administrator told me to go home and “take care of yourself.”

Yes, caretakers get sick, too. The symptoms of your mother show that all his efforts are not making that much difference. He’s having a hard time accepting that. Your dad needs to be convinced that he needs to take care of himself.

Arrange for a complete physical for him and, if possible, a short vacation. Try to involve the other family members. The major hospitals usually have services for caretakers.

Wish I had more to give you, but ther’s not much you can do except pull in all senior citizen services you can.
Draccy
 
  2  
Fri 6 Jul, 2018 11:15 am
@jespah,
Thanks, Jespah, for your thoughtful and kind reply! The idea of a secondary caregiver is a really good one, and it's one we've tried to suggest to him before. He always has the same objection: that, aside from the bedtime routine, eating and maybe an hour of helping her with exercise time, the person would sit around with nothing to do. He should stop worrying about the caretaker having nothing to do, and just hire someone. A challenge is finding someone physically strong enough to move her around, but I'm sure someone is out there who fits the bill.

I LOVE the idea of the grandkids sending him something in the mail as a surprise. And I have to remember to just plain invite him over more so he can get away for breakfast with us or something. Maybe establish a regular thing -- hey, it's Sunday breakfast, come on over!

You've thrown me a life preserver in the form of good ideas, so THANK YOU!
Draccy
 
  1  
Fri 6 Jul, 2018 11:36 am
@Linkat,
Hi Linkat, thanks for your reply! I wonder how my dad would view that idea. He's lived in the same house since 1967 and has a lifetime worth of possessions there. (He's a pack rat but thankfully not a hoarder!) He'd probably need at least for a while to keep the house *and* have the apartment with my mom. Food for thought, and I appreciate it!
Draccy
 
  1  
Fri 6 Jul, 2018 11:38 am
@PUNKEY,
Thanks Punkey! You're right, there are services and help that he needs to take advantage of. He's been referred to support groups through his HMO. He doesn't do it, though, always saying "tried that, didn't help." But I think he's just using that as an excuse to avoid having to dwell on his situation and talk about it. Understandable but I hope I can get him past it.
jespah
 
  1  
Fri 6 Jul, 2018 12:37 pm
@Draccy,
My pleasure - I'm probably in your generation and I know I'll be in a similar boat sooner rather than later.
0 Replies
 
Linkat
 
  1  
Fri 6 Jul, 2018 03:45 pm
@Draccy,
Draccy wrote:

Hi Linkat, thanks for your reply! I wonder how my dad would view that idea. He's lived in the same house since 1967 and has a lifetime worth of possessions there. (He's a pack rat but thankfully not a hoarder!) He'd probably need at least for a while to keep the house *and* have the apartment with my mom. Food for thought, and I appreciate it!


Yes I know that is a tough thing - it was for my husband's grandfather as well.
0 Replies
 
Linkat
 
  1  
Fri 6 Jul, 2018 03:46 pm
@Draccy,
Also do they have anything at the assistant living facility that your grandfather is at? There must be others in a similar situation even if he isn't living there himself maybe there is a group he could in a sense hang with - maybe while someone else is caring for your mom and he is taking a break.
0 Replies
 
 

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