New here.(2)

moxvox

Hi all: My mother was diagnosed around a year ago, but has been exhibiting symptoms of dementia for some time before that. After my father's death late last summer, mom's symptoms have accelerated. She has limited financial resources, and lived with my sister for 3 months until she began to accuse my sister and her partner of plotting behind her back, taking her money, and general emotional volatility. My brother asked her to visit to provide some respite to my sister, and mom has refused to return to my sister.

Our biggest problems are: first, that my siblings and I can't agree about how to discuss how to best care for mom. 2 sibling believe mom should be involved in these discussions, which inevitably are derailed by emotional outbursts from mom. On the other hand, we all feel as if none of us has the skills necessary to provide the best care for her.

My involvement is problematic, as I live 300 miles away from my mom and my siblings.

I'm not sure if I'm asking for input or just wanting to know we're not the only ones who have struggled with these issues.

Thanks.

SusanB-dil

Hi moxvox - welcome to 'here'...   A lot of support and help here.  I know others will weigh in, but please do know you definitely not alone with sibling issues.  Do one of you, hopefully, have DPOA and HIPAA access in place?  

If mom is giving outbursts with the discussions, it sounds best not to involve her.  If she has not accepted diagnosis, she may have anosognosia.  it is not denial, but the firm belief that nothing is wrong. It is best not to confront her with it.

The paranoia of someone plotting and stealing is not uncommon.  Does she have a Primary Doc?  You may want to tell doc about the agitation.

moxvox

Hi Susan:

Thanks for your words of encouragement.

We are working on POA and Medical POA. Since our mother is still considered competent she, of course, must consent to the POAs. Since she often doesn't acknowledge her condition (depending on the day), that's difficult.

Part of the sibling issue is that two of us insist that Mom be part of every discussion, which then ends with her outbursts derailing/ending the conversation.

She has a PCP and sees other specialists (including a neurologist) and is usually accompanied by one of my sibs. However, she is often combative and asks that the doctor bar whoever is with her from the exam room. This has resulted in several conversations about possible elder abuse, which can be uncomfortable for everyone involved. Her neurologist categorizes the dementia as mild, although her symptoms seem to lean toward moderate.

So, much going on, and I am mostly confined to the sidelines because of my distance from her and my siblings, which has its own problems.

Again, thanks for your kind words.

SusanB-dil

Do tell her neurologist.  If no HIPAA access is in place, one of you can still tell doc what is really going on, they just will not be able to discuss it with you.  Slip a note (send it, fax it, hand it) to the doctor and spell out what is happening. Sometimes, a PWD can 'show-time' and pull themselves together just enough to dupe a doctor into not getting a full accurate picture.

Do see an elder-care lawyer about getting the paperwork together. or, whichever one of you will be handling those important decisions.   (If she was diagnosed, how is she still deemed totally competent?)

LicketyGlitz

Dementia often strains family relations, mox, it's kinda like having a baby to save a marriage... a nightmare! My sister and I started off our co-care of our mom in a difficult place, we had just started to come back together after a HUGE falling out. One thing I did to help us navigate each other easier is that if something was important to my sister, than I had to respect that. Like in your situation, if my sister required mom's input about her care, then I would go along. Soon enough it will be clear to everybody that mom's dementia brain no longer has her best interest at heart, but I would give my sister time to get there for herself. Any pushing and shoving from me would make a tense situation worse.

And sometimes she'd have to back off until I was able to process a new dementia wrinkle and move in the direction of a solution she proposed. That worked to keep us from killing each other.

I'd second SusanB's suggestion to talk to her PCP or neurologist about medications that may help alleviate some of the paranoia and aggression (or even better, get a geriatric psych doc on her care team, they are gold throughout this journey). And get those legal docs in order. Whomever is managing her health care can do a lot via email with doctors now. One of my friends who is a long-distance caregiver like yourselves, she manages her mom's health care (appts, medication research and requests, etc.) all online, while her sister is boots on the ground for her parents because she's in the same city. That may be the way you can contribute too, while your siblings are boots on the ground.

Whatever your family decides, I wish you all the best! A tough road, but we found moments of joy that help us survive and sometimes even thrive.