Looking for any advice

lougirl

Hi everyone! My Dad has been diagnosed with Alzheimer’s for almost two years now. However we did notice things for a few years before his diagnosis. At first it was very slow and it seems like since March of this year he has rapidly gone down. He still lives at home and is currently with Palliative Care and Home Health. We do still bring him to his doctors for visits also. He is 85 and my mom is 84. She is his primary care giver. I live not far from them so I am able to go by and check everyday.

Long story short he sleeps a lot which I know is the disease. He does still eat but with prompting. He is total incontinent as he is in a Depends 24/7. He doesn't know the house that they live in. Wants to go back to his childhood home in another city. The doctors have put him teetering between the end of stage 6 and the beginning of Stage 7. The best way to describe the most recent thing that has happened is he is forgetting "how" to walk. I know this is part of the disease also and eventually it will lead to him not walking at all.

My problem is my Mom. It seems she wants and insists on doing everything for him. She doesn't allow any help. I ask and it seems like I am doing more harm than good. I have become the one she takes out her anger, tiredness, grief out on. I have not argued back and just try and stay calm and give her the grace she deserves. I know the care is too much for her and she just won't admit it. I have asked if she needs help in the home and she says no. I have asked if it is a money issue and she insists no. They also come from the generation where finances are hush hush. It is not a discussion we have had. She doesn't go there.

My brother does live with them. He puts a financial burden on them but she won't admit it. It is her baby and he can do nothing wrong. He doesn't work and he is capable. Just lazy because everything has always been handed to him his entire life. He's in his 50's.

I just need some advice on how to handle this situation. Maybe some guidance as how to proceed. I feel like the nurses from home health and palliative that come in can see the "situation". I try and talk to my mom about simple things about even getting a shower chair and I get resistance. I want to make sure my Dad is getting the care he deserves. She is doing the best she can I just feel more could be done. She is somewhat in denial about his diagnosis. She doesn't think he needs a shower chair for example. I ask if he can still manage to step into the tub and shower himself and yet he can barely walk and she tells me yes he can. I honestly don't even know how. He can barely stand up without leaning over and his legs wanting to give out.

Has anyone else had a situation similar to this and can offer any advice? Any at this point would be greatly appreciated .

harshedbuzz

@lougirl

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

This is a tough one. Your mom is not behaving rationally. Do you think she's in denial about you dad's progression and current baseline? Or do you think perhaps she's had a cognitive shift of her own that is impacting her ability to reason?

You need a Plan B in the event your mom has an illness or injury that prevents her from providing care herself. Fully 1/3 of caregivers die before their LOs. To that end, you need to have a CTJ with your mom immediately whether she wants one or not. You not only need to know what she'd want for dad if she can't be there for him, you need to know what assets they have and where as well as the legal paperwork to access them quickly. They both need a POA with you, or your brother, as primary agent for her and secondary for dad. I personally would not accept joint POA or the care aspects without access to assets to pay for care.

Given your mom's age, I wonder if she's like many other ladies of her generation would

take advice from a trusted family physician

harshedbuzz

THis site. Grrrr.

I'd be inclined to get her to the doc for a quick screening and discussion about the situation as you see it. You can share concerns with the doc ahead of time.

HB

psg712

Agree with HB. Depending on the status of your relationship with your brother, it might be good to have a frank talk with him before the talk with your mom. Maybe you could frame it as you have concerns but need his perspective, since he lives full time with mom & dad. Maybe ask how he plans to care for dad at home if mom is unexpectedly ill or incapacitated. That might motivate him to get on board with helping mom to think about her Plan B.

If brother is not willing to help with future planning for your parents, what are his plans for his own housing if mom passes first, you place dad in a facility and sell the house to fund his care? Just saying. But I know families are complicated. Hope you can make some progress to help your mom. She must be exhausted handling 24/7 caregiving at age 84. She sounds a lot like my mom was prior to her dementia, when she was caring for my ill father. Angry and overwhelmed but stubbornly independent and couldn't see the forest for the trees.

lougirl

https://alzconnected.org/discussion/comment/246991#Comment_246991

Thank you so much for your insight. I have tried to sit down and talk to her about what she wants if something happens to her. She says she doesn't know and changes the subject. It has been difficult. We have tried to sit down numerous times and have these difficult conversations. I can try to reach out to the physician and see what they think also. That was a great idea.

lougirl

https://alzconnected.org/discussion/comment/246992#Comment_246992

So sorry you have been through it too. It is just an awful disease for everyone involved.

My brother would be incapable of taking care of my dad and me and my sister have talked and stated if anything would happen to my mom we have POA for Dad and either her or I would take him in. We would have to sell the house and my brother would need to go to work. He is completely capable to work and live on his own. Just unable to care for my Dad.

I will try and have a talk with the physician to see if she notices anything and what advice she offers.

Thank you for taking the time to respond. I know I'm not alone.

ARIL

I am sorry you are facing this. Yes, I too have been through something similar, although the one refusing any help was a stepparent. I agree with others about strategies and will add this: in our case the physician was a help (I communicated via MyChart in advance of visits), and also a social worker affiliated with home health. It was the SW who finally set up conditions that made hiring some in-home assistance possible. That was just a stop-gap, but a lot better than it had been.

cdgbdr

I agree with ARIL. You may find that home health or Palliative care social worker could help. You should be able to call the agency to reach the SW.

H1235

What a rough situation. At their age I assume they don’t have a patient portal set up. I set one up for my mom and it was a great way to communicate with the doctor. This allows you to really think through what you want to say and you won’t forget to ask something. Do you attend doctors visit? I’m wondering if the doctor is making suggestions that your mom is not following through with. (Like maybe a walk, or seat in the shower, like you suggested) You said you and your sister are your dads DPOA, has your mom also assigned a DPOA for her. It would be a good idea. Hope you can find a solution.

harshedbuzz

@lougirl

It's great that you have a sister on the same page. Have you tried teaming up and sitting your mom down for an intervention? Needless to say, you don't involve dad in any of this. Preferably out of the house, so she doesn't have her son or DH as an excuse to leave the room.

If this isn't feasible, then perhaps drafting your own Plan B makes sense. Find a CELA who does a free consult/first appointment and ask what steps you'd need to take upon mom's death/incapacity and line that up. Learn about Medicaid in your state as a safety net. Find a SNF and MCF (3 is better in case you have a wait-list situation when you need one) and tour, ask questions and figure out the how dad will pay for it.

It sounds like your mom may have some anxiety around their finances. FWIW, much of mom's thinking around bringing in help and placement were driven by financial anxiety rather than devotion to dad although she would never admit that.

In the context of the chronically unemployed brother, she may be looking to preserve assets for his future. The way you describe your brother-mother dynamic makes me wonder if there isn't some invisible disability, perhaps unrecognized, that has prevented him from a normal launch into adulthood— a mental health issue, subtle developmental delay or learning difference that might have been hinted at during his school years. At 50+, even if he is capable, it's unlikely he could find a position in which he could earn a living wage.

Was dad the one who managed the financial piece of their marriage? Do you have a general sense of what their assets might be? Is the house paid off? What do comparable houses sell for? Does either have a pension? Is he a veteran? Do you know if they have an investment account? Is it possible she's been funneling money to your brother and hoping to avoid you finding out? FYI— she may run afoul of the Medicaid rules should she be gifting him money which could prevent/delay dad from qualifying for institutional Medicaid if they don't have a LTC policy or considerable assets.

Dad's gone, but I still use mom's portal and e-chart to communicate with her care providers and share concerns. I also attend all appointments with her. The regular players look to me to nonverbally confirm or deny her reporting during appointments, so I always sit behind her.

Good luck. This is some tough stuff.
HB