Getting support for my dad who is my mom's full-time caregiver

harnold87

Hello, first post here, hoping to get some different perspectives.

My mom was diagnosed with early onset alzheimer's nearly 8 years ago (I think) right around 60 years old, though she likely could have been diagnosed earlier, she had been showing symptoms for a few years at that point. My dad has always promised her he would take care of her, but as disease as progressed it's beyond a breaking point for my dad. For reference, my mom doesn't know who any of her kids are, generally couldn't tell you what day it is, where she is, how old she is, what her husband's (my dad) name is, etc. She occasionally gets lost if she tries to go for walks around their 55+ community after many years of being able to go for the same circular walk around with the dog with no issues.

All of this being said, my mom is mostly able to understand her decline at times, and at others really struggles to articulate herself and her needs. We have talked about getting in home care giving support but my mom got very upset when my older sister scheduled for some folks to come into their home to meet them and talk options.

I'm looking for help understanding how to navigate getting caretaking for someone that does not want help. I can see the ways that this is destroying my dad trying to be her 100% of the time caretaker, the man can't even take a shower without having to rush and worry about what my mom is doing. I just want for them both to get some supports during this incredibly difficult time. Any and all suggestions/opinions welcome.

SusanB-dil

Hi harnold - welcome to 'here', but sorry for the reason.

As has been said on here, you must have the oxygen mask on yourself before helping everybody else. Dad needs the help, as you already know. Caregiver burnout is real!! You can try fiblets. Get someone to help and tell mom that she and your dad are helping them. 'This person is helping so they can get more credits for their CNA course'. or 'This person is helping because they need the extra funds'.

Your mom may understand her decline only partially. For the most part, she probably has anosognosia. This is not denial, but rather, they think that everything is fine and everybody else just wants to aggravate them. In her case, she doesn't see the full scope of decline and thinks she is doing just ok.

You might also check into adult daycare a day or three a week. You could tell her it is a senior center, perhaps.

Some memory care centers will take someone in for even just a week, called respite care.

Your dad promised to always take care of her - that doesn't necessarily mean he can safely do so all by himself. Even if, at some point, she needs memory care, he will always be her advocate, watching out for her, just not 24/7 by himself. That isn't sustainable.

And yes - 'this' does create difficult times and it is hard.

H1235

Welcome! While I’m sure a caregiver aid would be best for your dad, maybe consider some other ways he could get help. Some ideas- hire someone to mow the lawn, hire a cleaning service, someone to do laundry, maybe some kind of meal delivery service, order groceries online and have them delivered. I know this still doesn’t allow your dad to take a long relaxing shower. Maybe help with these things might take some pressure off him. Would you or your sibling be able to devote a set x hours a week every Saturday (or whenever) to stay with your mom so he could have a break? Having it planned weekly might give him something to look forward to. I hope you can find something that works.

harnold87

https://alzconnected.org/discussion/comment/241564#Comment_241564

Totally valid suggestions, a bit more context for the post. My parents retired and moved to Southern California (about a 9 hour drive away from myself and two sisters on a good day). As for offering to get additional helpers like cleaners or folks to help with things around the house, he has insisted that it's not something he wants someone else doing. I haven't pressed on it in a while though so I may need to bring that topic up with him again.

harshedbuzz

@harnold87

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

Yours is a frustrating but very common scenario. My mom was much like your dad in that she was very resistant to bringing in outside help for respite and assistance with dad (who was not a pleasant PWD). She was also too close to the situation to see the impact his care needs were having on her physical and emotional health.

I was fortunate that I did convince mom to move back to the area where I live after she almost died with dad as her oblivious healthcare advocate. My appeals to get help in were mostly fruitless. Part of this was that dad's anosognosia prevented him from understanding that he needed care of any kind and she was justifiably concerned about his reaction. Part of this was financial; mom was loath to spend money to buy herself some respite from the slog of caregiving. She would have happily accepted all the free help I offered but I was too busy with their moves to play that game, too. Part of it was that aides coming to the house didn't give her the break she craved which was time alone to putter in her own house. The expense along with the aftermath of dad's anger to go wander around shops made it a poor investment in her opinion. She didn't like being home if an aide was there as that made the house feel like a nursing-home-for-one.

You might be able to make a better argument for aides if you understood why dad is against the idea. Or not. Mom didn't come to the realization that she should have gotten more help sooner only came after he died and her self-neglect resulted in a health crisis that cost her vision in one eye and the ability to drive meaning that he stage 8 is not what she planned for, and neither is mine.

In any case, you and your sister need a Plan B in your back pockets in the event dad is one of the third of all caregivers who died before their spouse does. Sometimes waiting for the other shoe to drop is all you can do.

HB