Double Trouble - long distance edition

CareFromAfar

 Hi All,

I’ve been lurking in this forum a while & decided to post in hopes of getting some advice for my situation. I’m sorry this is long, but I would be so grateful to anybody who can chime in. My head is spinning!

This is regarding 2 LOs (my grandparents) who are basically parents to me. Grandpa has vascular dementia, Grandma has Parkinson’s & congestive heart failure. They live in CA and I live in WA state. Due to the pandemic and having 2 small children (baby + preschooler) it’s been several years since I’ve visited them. I had no idea what was happening until my grandma was hospitalized for her CHF about 5 months ago. Neither of them thought to seek medical care even when it was clearly urgent… she only got treatment because my uncle finally forced her to the ER (and 3 months after discharge the exact same thing happened again).

Since the first incident, Uncle has started reporting all of their unsafe behaviors to me. He lives with them and has become the default caregiver, but does not want to be. He is a recovered addict and I feel really concerned about his sobriety & emotional capacity to deal with all this. Of course, according to them “everything is fine!” and “don’t worry about us!” 

I truly feel that without my uncle’s intervention my grandma might be dead. She has very limited mobility and also signs of cognitive decline from her Parkinson’s. Grandpa *seems* fine most of the time but is exhibiting poor decision making on multiple levels, has gotten lost in familiar places, is missing some key memories, etc. I don’t trust him to care for her and vice versa. Recent photos of their home depress me and I’d consider it an unsafe environment for people in their condition.

The good news: they updated their estate planning a few years ago, and I was able to get all of the paperwork from their attorney! However, the medical POA, financial POA, and trust are all “springing”. They list each other as the first agent, followed by me. So I’m having trouble wading through the red tape of being able to help them. Grandpa’s neurologist is preparing a letter saying that he no longer has capacity. But the springing POA specified that it needs the opinion of *2* doctors… so now I’m trying to figure out how to get him into his GP for a second opinion. 

As for Grandma… I really can’t tell if she’s still of sound mind or not. So I have no idea how to proceed there! If I talk to her before her Parkinson’s meds have kicked in she says really strange things. And her lack of awareness to seek medical care for herself is concerning.

My uncle desperately needs the freedom to move out, but because “they’re fine” I’ve only been able to convince them to hire a caregiver for a few hours a few times a week (to help Grandma shower). Somebody will hopefully start next week, but I know it’s not enough. Ideally, I really want to move them into a MC facility near me so that they’ll be safe and I can visit them often. But until I can figure out how to activate POA, I don’t have access to their money & I can’t afford it on my own.

Would there be a benefit to me consulting an elder care attorney? Also, is that very expensive? I see that mentioned on here often but not sure it applies in my situation. 

Any other advice or just words of encouragement would be so appreciated. I feel unqualified to navigate this & unsure of logical next steps.

May flowers

I am sure someone will chime in on the legal aspect, but I just want to welcome you and let you know we all understand what you are going through. I hope you are able to get them to a MC care near you soon.

M1

Welcome CFA.  What a difficult situation.  I would vote for consulting an elder care attorney (there's a website with locations, nelf.org).  Most offer a free initial consultation.  I would personally think it's worth it just to be sure there's not some way of facilitating this that you're not thinking of.  Good that you have the paperwork, but what a mess.  Sounds like you are going to need documenation from both of their doctors, not just your grandfather's.

Their moving and your having control of their assets is going to have implications for your uncle also.  Just wondering if that's another aspect of this that bears thinking about?

BTW, the "we're fine" part is a condition that's part of the disease called anosognosia, if you want to read about it.  It's more than denial.  

Wishing you luck.  Glad you found this forum.

CareFromAfar

Thank you for the welcome May Flowers!

M1, I appreciate your advice! I’ll move forward with an elder attorney consult… I’m guessing I should find one in their state. I also appreciate your reminder of anosognosia… I learned about that here but couldn’t remember the word. I haven’t slept though the night in almost 4 years (motherhood!) so I’ll be the first to admit my own executive functioning and memory are not operating at 100% Part of why I’m reaching out for advice.

With Grandma I’m not totally sure where personality traits end & disease begins. We were always very close until she started pulling away from me a few years ago, and I never understood why until now that this all came to light. She’s more self aware than Grandpa so there’s a chance she may voluntarily give up control if I can have a CTJ talk with her in person. Grandpa on the other hand is fighting this diagnosis tooth & nail, so I’ve been focusing on him  first. Especially since her physical health is so poor, I feel an urgency to get this legally sorted before she ends up hospitalized again (or worse).

As for Uncle, I know they have already asked him to move out. He says he plans to leave once they have a caregiver coming in. Not sure if it’ll actually happen or if this is all a role play at normalcy.

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Jo C.

Welcome, Care; this certainly is a set of challenges.   I live in California; a few years back I had to get documentation regarding the inability for my mother and step-dad to be able to make decisions for themselves.  My mother had a behavioral variant of  FTD and my step-dad had Alz's. 

What I was able to do was to get a written letter from the dementia specialist that was a Neurologist and another from the primary care doctor.   Consulting an Elder Care Attorney in California is a good idea.   It would probably be difficult for you to make a trip down to see the Loved Ones (LOs) and get the ball rolling.  How stressful this must be for you.  Also; it is wise and caring of you to understand how difficult this must be for your Uncle; that is no small thing considering his health history.

I wonder if your grandmother may have or may be developing dementia or even Lewy Bodies Dementia which is often seen when Parkinson's Disease is present.  As for the grandparents, there is a big difference between "want" and "need."  Very often my LO would know what she wanted and was quite intractable about it; that did not mean that she was capable of knowing what was in the least able to be done.   Getting that legal document was very helpful.  Then I just worked with therapeutic fibs to get things done and get care in the house.   When my mother finally got to really know the care aide, (picked one for a good fit), she loved her and no more fussing or trying to fire anyone.  What a relief that was.  I think she was more impressed with the helper's housework than she was with getting any personal assistance.

The Alzheimer's Association has a 24 Hour Helpline that can be reached at, (800) 272-3900.  If you call, ask to speak to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They have much information, are wonderfully supportive and can often assist us with our problem solving.

California has changed regarding Medi-Cal and other things which has made some instances easier.  There is a link to a general information group that specializes in California legal matters that is highly regarded.  Here is their link; you may find some helpful information and they may be able to assist if you call:

http://www.canhr.org/

Let us know how you are doing and how things are going; we will be thinking of you,

J.