Frequent reader, new poster

Middling Child

First of all, thank you to everyone who shares their stories and information in this forum. I've been reading here for at least a year, but this is my first time posting. 

My mother was diagnoses with mild dementia/cognitive impairment several months before the pandemic, and has been quite steadily declining since then. I would estimate that she is currently in stage 5 and has been for a little while now. She is lucid and compliant but needs help or at least prompting with most ADLs, including showers, medications, and meals. She currently lives alone in an "active" retirement community.

I am the secondary caregiver, as I live about 5 hours away from my mom; my sister who lives in the immediate area is the primary caregiver. I'm running into a problem that I haven't seen discussed in the forums--it seems like my sister is the one in denial about how quickly my mom's dementia is progressing and what level of care she needs.

My sister visits about 5 days a week, sometimes just stopping by with groceries and sometimes spending the entire day and occasionally the night. I visit about once every month or two, usually for 5-7 days, staying with my mom. 

My mom is steadily losing skills, and on my last visit there was a noticeable decline in her short term memory, with her forgetting conversations almost immediately. She is up and down over the course of each day, and from day to day, but the overall path is one of decline, mostly steady but sometimes with sudden losses of capacity.

When I've tried to raise with my sister the need to get more help, she resists, pointing out all the things that she is able to take care of and listing her strategies for managing problems as they come up. There are situations in the house or in my mom's non-dementia medical care right now that seem borderline dangerous to me and have been for a while, but when I ask what we're doing about them, it seems like there is no sense of urgency, she's "looking into it." If I ask too many questions, she shuts down and stops responding to my texts or emails. 

This is actually very unlike my sister's personality in general. She is the eldest child and generally is over-cautious responsibility personified. But, I can't figure out what's going on or how to reach out in a way that doesn't make her feel criticized. She's doing an amazing job and cares for my mother with amazing love and compassion. But, she looks to me like she's burning herself out. A friend of mine who is further along this journey with her own mom said she may have lost the forest for the trees, forgot to put on her own mask first, and is now not in a place to make good judgments. I guess that's possible, or she isn't ready to think about a likely future of AL/MC, when she's seemed resistant even to getting any home care to give her a break. She happily takes a break when I'm able to be there, but that's getting to be harder for me with work. 

So, I guess my question is, has anyone experienced this with a sibling or family member who is in the primary caregiver position and is therefore the one making most or all of the big care decisions? And if so, what are some ways to communicate in a non-judgmental, loving way?

feudman

Middling, its very common for a family member or LO to he in denial about the extent of impairment. If the primary caregiver is with them daily, they tend not to notice the decline as much as those who visit at intervals. There can be other reasons for denial, like simply not wanting to face up to it. We surely all want for it not to be happening, and postpone all the hard choices on the horizon. I'll stop short of advising you on how to approach this, since family dynamics are so complex, but are there other family members or LO's you can discuss this with? That's where I'd start. You certainly need to come up with a plan, but proceed with caution. Maybe others have dealt with this and can share what worked & what didnt. Best wishes to you.

star26

 “There are situations in the house or in my mom's non-dementia medical care right now that seem borderline dangerous to me and have been for a while, but when I ask what we're doing about them, it seems like there is no sense of urgency, she's "looking into it." If I ask too many questions, she shuts down and stops responding to my texts or emails.” 

If you feel comfortable sharing specific examples, others here may have specific tips or language for addressing those issues with your sister.  But even without examples, I can imagine the risks of a Stage 5 PWD living at home alone, even with daily visits.

 

 

Speaking for myself as an overwhelmed and burned out primary caregiver, sometimes when someone has pointed out things that need to be done or improved upon I have shut down or felt bristly about it. It never happened, but if that same person were to offer to do that work for me instead (to whatever extent possible) it would have made a difference. For instance, rather than suggesting she find and hire home caregivers (which can be a lot of work and a pain in the butt especially if one is already busy) you could acknowledge how busy she is and your desire to help and ask if she would like you to research and interview caregivers or agencies. You could see if she would be open to having you act as an assistant?  

If she won't accept help, or the issue is that she doesn't agree with what you feel needs to be addressed, you may just need to continue to defer to her and monitor the situation until or unless something bad happens.