Dad - Spouse of Dementia person - Mom Needs Help

FLDaughter1

Hi: Just signed up today. Mom and dad have been living with my husband and I for 25 years. Mom got dementia about 5 years. She broke her femur 4 years ago and after the operation her dementia got worse. This past April she broke her hip and once again the dementia is worse. It is a lot of work to care for her because my dad who is 88 years old can't accept the fact that she has dementia. They have been married for 63 years. My dad needs help but is convinced he doesn't. If he didn't get her all wound up caring for her would be so much easier. We want to keep them at home together as long as we can but this is taking a toll on both my husband and myself.

The Veterans Administration said they can't help dad because he does not have dementia (but her really needs help) but I need to get him to a in-person support group. One to get him out of the house and two so he can hear what he is not supposed to be saying and doing from a third party. Hearing it from his daughter is not working.

Anyone else with this type of issue?

Fairyland

Sorry, that sounds really rough.

A support group might get him out of the house -IF he will go, since he “doesn’t need support”.

Learning a whole new way of dealing with his wife of 63 years at age 88? It’s possible but not likely. But yes it might work better from a 3rd party. We daughters, even after many decades of life, don’t know diddly squat, right?

I wonder if it might work even better coming from an authority like a visiting nurse or the PCP? You could do some behind the scenes exploration with them and see if they will play along.

harshedbuzz

Hi and welcome.

I did have a similar situation with my own parents for a time. 

In my case, dad clearly had dementia, but mom refused to accept this as a possibility which meant dad wasn't diagnosed until pretty late in the game on their 60th anniversary. He also had mixed dementia and one of those was alcohol-related which made angered my mother-- she was beyond resentful that her life was ruined by what she considered to be a self-inflicted condition. 

He was not the pleasantly befuddled version of dementia- but aggressive and nasty. Early on, before she processed and accepted the situation, she would say things that would get him going and I would have to drive to their apartment and get them both settled down which got real old, real fast. I cannot imagine the stress of that under your own roof.

Getting him to an IRL support group would be my first strategy to try. I would say it was the single best thing I did to support my mom. For whatever reason, when peers told mom something I'd already told her 100 times, it stuck. I also got her to a psychiatrist and therapist for medication for her depression/anxiety and to give her another safe place to talk that wasn't me. 

This also helped her. I know sometimes men aren't as open to reading, but this one is relatively short.

understanding-the-dementia-experience.pdf (alzconnected.org)

The other piece, too, is that sometimes both parties in a marriage have had a cognitive shift but the second one goes unnoticed because it's not as far along or presents differently. A check up at which the PCP screens him might be in order.

HB

May flowers

My MIL (late 70s) knew that my FIL had dementia but had difficulty dealing with it, often leading to escalation. Support groups would have been a huge help to her (in hindsight).

One thing to really keep an eye on is your dad’s health, and yours and your husband’s too. My MIL was so focused on my FIL, that she neglected going to doctors and such. One month after we convinced them to move here and got them into new patient doctor visits, they discovered she had stage 4 cancer. She passed away 6 months later. That’s when we took over my FIL’s care. 

DearLiz2020

This is hard; I'm sorry what you're going through.  I think you're doing the right thing!  I went through something similar with my Dad and my Mom with dementia with mixed Alz.  What I did for my dad was have a few chats about online support groups vs. in person, and, signed him up for all of the Alz related education classes and insisted he attend with me, so, he understood the gravity of what he's dealing with from a third party (not me, his daughter).  After going through all the classes, he agreed to attend a 1x/week online caregiver support group in my area offered through a county government elder office.  While I can't get my dad to ever go into 'therapy' I think it helped a bit.

LittleVolcano

Does your dad have any friends or relatives who can take him out and do something fun, or just run errands, or talk, and give him and everyone else a break? My husband often organizes trips out with my dad's brother to get sandwiches and sightsee where dad and my uncle grew up. They enjoy reminiscing (and they all enjoy each other's company as well). 

For my dad, he also ended up talking to old friends (usually at funerals, unfortunately) and found friends who also had wives with dementia. Them sharing their struggles helped Dad to accept our situation as well as opened his mind to doing more research about it (online) and has recently opened his mind to hiring help. He won't do in-person support (and I don't either), but he's done a lot of online research. But I feel that talking to his friends about their shared experiences has helped him the most.

I also told him about this forum. He was afraid that it was just a bunch of people complaining and badmouthing their LOs, but I told him that's absolutely not the case (of course we vent, but we are typically venting about the disease, not our LOs), and that he can just search and browse without having to contribute if he doesn't feel comfortable. 

Something will get through to your dad in a way that's comfortable for him. It's just a matter of figuring out what that is, which is the challenge. 

Big hugs and I wish you the absolute best of luck! Thank you for caring for both of them so closely. 

FLDaughter1

Thanks everyone. Unfortunately dad has only one sister-in-law left (she'll be 97 end of this month) and all of his friends have passed. We do have an appointment set up for him to see his PCP. My husband goes to all his appointments and I go to mom's. My husband plans on speaking with the PCP as we can't believe that the VA can't do anything for him. Even if he joins some type of group where he can talk about his military experience and stuff. I did find one in-person support group close to home so we are going to try to convince him to go...with my husband.

My siblings are in Virginia and Massachusetts and they try to visit when they can but they all have families that are having families.

I read the article that harshbuzzed sent and I'm thinking of printing it in pieces in large print so Dad can read it. It was a great article. Maybe that and the support group can bring him around.

My next step is to find something that mom can do. She used to do sudoku and play cribbage but when she attempted to play again she got depressed and angry with herself that she couldn't do it anymore. Even puzzles are getting tough for her. I'm looking for games that maybe we played as youngsters with no math or strategy involved. I have to be careful not to insult or demean but I'm sure I'll find something.

Will let you know how it goes with his PCP in two weeks.

caregiving daughter

Boy, if you could find a really good geriatric care manager, perhaps you could contract with the person to spend an hour with your dad. You would need someone that fully understands dementia and is really good relating to a senior male. It would be expensive but I understand how you are looking for someone that would appear as objective. How would you assess your dad's cognition? It sounds like you have tried to explain the diagnosis and the do's and don'ts but for some reason he is not following. Maybe it's what you said with it coming from his daughter.