Intro since "Caring for a parent" is new

JMack88

I introduced myself in the caregiver's group a while back, but now that there is a group specifically for those caring for their parents I thought I'd re-introduce myself to this group. Sorry if this is super long!

My younger sister and I are the caregivers for our mother. Our father passed away in 2018 from a rare disease called Multiple System Atrophy (MSA) which can best be described as Parkinson's Disease on crack. The progression is much faster than Parkinson's. It was a very traumatic experience for the whole family.

My sister and I are both single. Also, when my mother and father re-did their wills, medical POA, Living Will, and other end of life legal stuff, due to my dad's initial diagnosis which was Parkinson's (because it didn't become obvious until later that he had MSA) my sister had gone with them to drive and since she was there, she was assigned POA since she could sign the paperwork that day. This is not really a problem for me since my sister and I are usually on the same page as far as caring for mom goes. During Dad's final illness, my mother was the one making all the decisions for him.

After Dad passed away, my sister and I began noticing mom was having some cognitive issues. After multiple issues convincing her to see a new doctor because my sister and I both felt her primary care doctor was incompetent, we finally got her to see a geriatrician for primary care. Mom just turned 84 in June. The geriatrician diagnosed her with mild cognitive impairment a few years ago. In April this year, he said her cognitive impairment is "progressing as expected." She was otherwise in fantastic health for someone her age.

My mother and father were living in Pennsylvania before dad's illness became too much for mom to handle alone. After Dad passed away, we convinced mom to spend winters in Maryland at the house we were raised in where my sister is living. This was ostensibly due to the lake effect winters up at the Pennsylvania house. In reality, it was because we were becoming concerned about mom's ability to care for herself due to forgetfulness causing her to not be able to track her medication or eat regular meals.

During the summers, mom has insisted upon going back to Pennsylvania. However, since my sister teaches school and has summers off, she's been able to go to Pennsylvania with my mom to spend the summers and keep an eye on things. I usually trade off with my sister when I take my summer vacation from work. That way my sister is able to take her continuing education classes for teaching and get a break from caring for mom.

This summer we had our first major incident. The day after I arrived and my sister left Pennsylvania, mom had a fall and broke her humerus at the shoulder and her cheekbone both on the left side. She's right hand dominant so at least that wasn't a problem.

However, between the pain, the emergency room visit, and the heavy pain killers (vicodin) which really knocked her for a loop, she was really out of it for the first week and barely got out of bed for anything but bathroom breaks. I couldn't leave her side because she was so unsteady and confused about where she was that she couldn't find the bathroom and could barely walk. When my sister returned the 2nd week into this situation, we had to make a second emergency room visit because mom was constipated from the pain meds.

We ended up bringing mom back to Maryland where it's easier to care for her and we have her regular doctor and a support network of extended family to help.

Long story short, mom's recovering. However, there seems to have been a jump from where she was cognitively prior to the fall to a more advanced state. My sister has had to start paying bills and other things mom was capable of prior to the fall. Before the fall, mom was able to pay bills but not balance the checkbook. Now mom can't write a check without having to re-write it multiple times because she makes errors.

Things that are frustrating for us include the constant repetition of things, especially her calendar. She will sit there for hours looking back and forth from the clock which displays the date and time to her calendar and telling us everything coming up for the next two months.

Her diet is frustrating us. Before she fell, she'd take a very small portion of everything we were having at meals, then eat half of it and put the rest in the refrigerator "for later" which results in the refrigerator being full of two bites of this or that on saucers/plates. She would also drink one bottle of Ensure a day, half in the morning and half in the afternoon. Now it's a chore to get her to eat more than two bites of ANYTHING although she will take several sips of Ensure, but she wants to put everything back in the fridge after just tasting it. She claims she's not hungry. We realized that after she was able to feed herself again she started eating a LITTLE more, but still not what she needs. The doctors want her to eat 3 square meals a day plus two bottles of Ensure. We are definitely not getting that much into her on a daily basis. Maybe in 3 days, but not in 1 day.

Getting her to drink anything and stay hydrated is just as big a task. She never feels thirsty so she won't drink anything even if it's available and sitting right at her elbow.

She doesn't remember going to Pennsylvania this summer at all and is really upset that the whole summer is gone and she "didn't get to go up home." She keeps talking about going by herself and I think the only thing keeping her from trying is that my car is parked behind hers. My sister doesn't think she'll remember how to start her car since she hasn't driven in several years - we've been taking her everywhere she needed to go. I don't want to take the chance that she might figure it out.

She's about to start two months of physical therapy 3 days a week for her broken shoulder and that's going to be difficult for my sister and I to get her to with our own schedules.

Personally, I'm frustrated that I've had to move into my sister's guest room and have spent the last 8 years there caring for my father and now my mother to assist my sister. I have my own place that I visit once a week to pick up my mail and water my plants. I want to go home and be around my own things. However, I can't leave this all to my sister to handle, she's asked for my help and really needs it. During COVID it also made sense for us to stay as one household so we didn't need to mask up around each other.

I'm just so very tired emotionally and physically all the time lately.

Emily 123

Hi JMack,

A lot to unpack. I'm so sorry. It's ok to want a life. It's ok to want to be in your own home with your own things. I had my mom with me while we waited for the covid vax to be released and I found it very hard to juggle working and keeping an eye on Mom. I can't imagine how much harder it would be if I were living out of a suitcase in someone else's home.

Unfortunately it sounds like your mother's disease has progressed, which isn't unusual when there are stressors. The current plan doesn't meet anyone's needs.

With her short term memory no longer working, and the effects of the disease on her reasoning, she's no longer got the capacity to make decisions. It's time to activate the POA and have a good discussion with your sister about where she sees this going--you can't live in her home indefinitely.

For your peace of mind, pop the cables off her car's battery, then look online to see the bluebook value and sell it as an asset to pay for her care. (We used Carvana, and it was easy.) She doesn't have to be involved in any of the process, the car can just dissappear one day when she's out, with the excuse that it's in 'the repair shop'. The POA can sign off on all the paperwork (as 'acting as POA for xxxxxx'').

Your mom may be at the point where out of sight is out of mind. If she's really focused on that calendar, maybe try removing it and/or the clock for a bit to see if it breaks her focus on wanting to go to PA. Worth trying if it helps keep her calm.

I would say that the least disruptive thing would be to do a single move to get your mom into a dementia-focused assisted living or memory care facility that can provide rehab in-house. ( Her rehab team might know of some nearby, if she'd stay in Maryland). Or you could consider a care home if they could handle her need for transport and have a good understanding of dementia. If you've been following the threads here, you know that contentment with any move may or may not come to our loved ones, because the disease will never let them comprehend the situation fully, or let them use logic and reasoning like they used to. It can be hard for them to adapt once the disease really takes hold.

As for the eating...there's often a gravitation towards sweeter foods and treats. Sometimes the food itself is hard to eat from the plate because of visual field changes. Sometimes it seems like the texture of foods can throw people off. My mom stopped liking stews and things like rice and noodle bowls where ingredients were all together--she wanted her foods not touching, and she doesn't like thick, creamy textures anymore (think mac & cheese--I must note that there's ALWAYS room for ice cream!). She does better with finger sandwiches now--nothing drippy or messy. I can get her to drink milkshakes with protein powder in them. She'll drink Gatorade, since it's sweet. She'll also do the 'few bites' thing too. I just wait a few moments and bring the food back to her out of the fridge, telling her she saved it from yesterday. A few more bites..back to the fridge, wash rinse repeat.