So many questions! Ups and downs, rapid decline, toileting issues, when to move....

lauraleaf23

Hi all,

My 82 yo mother was diagnosed with Alzheimers just a few months ago. We moved her into assisted living a year and a half ago with "mild cognitive impairment." In the last month, we have seen a significant decline. She was prescribed Aricept about 6 weeks ago by her neurologist and the rapid decline started shortly after. Just lots of anxiety and confusion. He has now taken her off aricept (it's been 2 weeks or so). She really declined in the area of toileting- she started complaining of "leakage" so we started her on pads. She obsessed and obsessed over the pads- my brother took her to the store and they bought 3 different packs, so then she was obsessing over which ones to use. It was like overnight she wasn't sure of how to even go to the bathroom. We moved to depends. Still so much anxiety around toileting. She feels she has to go pee then very little comes out. She woke me up 3x when I was there a few days ago saying she needs to go to the hospital and she needed a laxative. I was able to get her prune juice and a laxative, so she had a BM. I know it could have been a UTI, but her urine culture came back negative.

Doctor upped her prozac and prescribed remeron as an anti-anxiety and appetite stimulant.

Yesterday was a good day, she sounded super chipper on the phone. I live about 3 hours away, so I can't be there all the time, but we talk at least once a day. Tonight she sounded distraught again, like she has been this whole past week. She is very aware there is something wrong and she keeps saying she needs to go to the hospital or see a doctor. Her doctor was there last week and there is nothing a hospital or other doctor can do. It's heartbreaking to see her so distressed.

I've been wanting to move her closer to me for some time now, and I think it may be time. How do I know when it is the right time? How will a move impact her? Here are some of the things I'm thinking of:

1. She has friends, familiar faces and caring workers in her AL place
2. She has a routine and it feels like home
3. She has lived in the same city for 43 years- if she were to move closer it is not as beautiful and I think she may be disoriented.
4. I am her #1 support and caretaker. If she is closer I can be there more often and it will take the stress of travel off of me.
5. Should we do memory care or AL? Board and care? I went through this with my dad, but he was at home with my mom until he couldn't be, then we did a board and care which seemed to hasten his decline because they just kept him in a wheelchair all day (he was ambulatory before) and had almost no stimulation. This was extra heartbreaking to see.

I'm researching leaves of absence from my school district and FMLA. Very difficult to know what I need to do and how much time I may need.

Thanks for listening.

Laura

harshedbuzz

@lauraleaf23

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

You said:

1. She has friends, familiar faces and caring workers in her AL place. As dementia progresses her friends will drift away. Some because of their own health issues but most because interacting with a PWD is difficult and not rewarding.
2. She has a routine and it feels like home As PWD progress, former routines will need to change. Many will become confused about "home" as they progress into stage 6. At that point many will be begging to "go home" even if they're in the actual building in which they've lived for 50+ years. At this point "home" is more of a feeling of safety without confusion than a place.
3. She has lived in the same city for 43 years- if she were to move closer it is not as beautiful and I think she may be disoriented. This would not concern me. Most PWD by stage 6 aren't actually out in public very much so which city doesn't really matter. The other piece to this is that with a decline in cognition, changes in visual processing and a tendency to kind of time travel the PWD weren't oriented to location. I moved my dad from his beloved house in FL to suburban Philly and when he looked out he thought he saw palm trees and fretted over tropical storms. Auntie initially believed her lovely MCF was the married student housing at Rutgers circa 1949 and later described the view from her room as overlooking the ocean and rocks and not the stand of pines that the rest of us saw.
4. I am her #1 support and caretaker. If she is closer I can be there more often and it will take the stress of travel off of me. This is the number one reason to move her and trumps any other concerns you might have. As the disease progresses there is a real likelihood that she could have a fall and be sent to the ER to be checked out. When a facility sends a person to the ER, they do not send a caregiver with the resident which could result in mom alone in an ER unable to advocated for herself. You not only need her closer, ideally you want to be able to get to that ER before she does. As her POA it's best you are there for her.
5. Should we do memory care or AL? Board and care? I went through this with my dad, but he was at home with my mom until he couldn't be, then we did a board and care which seemed to hasten his decline because they just kept him in a wheelchair all day (he was ambulatory before) and had almost no stimulation. This was extra heartbreaking to see. When I was in your shoes, I chose a MCF. My cousin put her mom with dementia in an AL not realizing how much scaffolding she was providing before the move. It was a disaster. My aunt couldn't track time and missed meals, she couldn't keep up with the activities and conversations with the other residents and became more isolated. A few of the ladies who didn't care to interact with a PWD were outright mean about it. Care at this place was a daily well check and medication distribution-- my aunt had a fall and wasn't discovered for hours. She suffered a hip fracture and went downhill from there rapidly. I don't know if Board & Care is a thing where I live anymore. My grandmother was in one years ago that was a real dump; my cousin moved her within the month. From what I hear though, I would prefer a MCF where staff are trained in dementia care and all aspects of the community are dementia-informed from the design of the building to the activities offered.--HB

lauraleaf23

https://alzconnected.org/discussion/comment/187916#Comment_187916

"Board and care" around here means a house where there are 6 residents and there are round the clock staff- I think it's usually 2 during the day and 1 at night. There is a lot of attention given to each resident due to the low ratio, but depending on who else is in the house and their current state of mind/ability it can be challenging. With my dad, he went to a place where people were basically there to die, so while he was higher functioning before, he just went downhill so fast. Before he was placed there, he had lived at home with my mom. There was a rapid decline, and he was so confused that we ended up taking him to the hospital where he stayed a week (NOT RECOMMENDED if you can avoid this- it was hell) while we searched for a place for him.

harshedbuzz

I'm sorry for your experience with dad. That is heart breaking.

For a PWD I lean towards a high quality MCF.

The Board & Care my grandmother was in sounds similar. On paper it sounded appealing-- a more "homelike" setting "in the community" with a similar staff to resident ratio. In reality, the ratio was seldom as presented as the caregivers were also charged with laundry, cleaning tasks and meal prep so effectively there was one person tending to care a lot of the time.

Dad's MCF was designed with "neighborhood" that each had a dining room, kitchen and living room area for 10 residents at most with 2-3 hands on caregivers from 7am-11pm plus the DON during the day. Schedules were set so that there was no "weekend B-team" meaning dad always had someone who knew him and vice versa. This place only did MC; staff was not only well trained in dementia-informed care they were working there by choice. My aunt's MCF was very good, but it was part of a CCRC and they did sometimes have floaters or newbies who took the MC job in hopes of transferring to a different unit.

They had activities daily and a recreational therapist who filled the role of activities director. She offered all manner of coffee groups, daily walks and exercise, music programs (live ensembles from area schools or a DJ for the monthly family party), crafts, games, and movie matinees. When she learned dad liked golf, she dug up a putting practice set for him and a few others.

HB

lauraleaf23

https://alzconnected.org/discussion/comment/187928#Comment_187928

Thanks for your insight. Where are you located? I'm having a really hard time finding any sole MCFs. I found one today I really liked, but have researched and found it is part of Frontier, which had a class-action lawsuit not too long ago for not paying fair wages... they have 55 residents, and say they have a 8:1 ratio, but I'm worried there won't be enough care. They have a new license, so on our state's Social Services site it doesn't show any history of complaints or violations. Feels a little fishy, even though I liked this location more than any other I've seen. Beautiful grounds and clean interior. They said they do not have a nurse 24 hours/day. The one other MCF I liked in terms of programming is on a super busy street (as I think I may have mentioned above) and has a very minimal outdoor area. Up until now, my mom has enjoyed going for walks and is still very ambulatory, so the nice grounds is really appealing to me.

harshedbuzz

@lauraleaf23

I'm in suburban Philadelphia.

Dad was in a Promedica Company "Arden Courts Memory Care". They have facilities in several states.

Locations - Arden Courts (arden-courts.org)

I live in an area well served by these sorts of places. I passed a dozen MCFs on my drive to dad's place and they've built 2 more since he died. I toured a dozen places before placing. A few of the fancier ones didn't take Medicaid if dad outlived his assets and they tended to be the kinds of places that cherry-picked for the pleasantly befuddled. My sweet auntie would have been a good fit for such a place, but dad probably wouldn't have gotten past the interview.

Dad's place was less fancy- no crystal chandeliers or 9' case clocks there. It was clean and nice, but it had a more lived-in patina to the public areas as a home's family room would have. Staff was well trained and paid a bit more than other places so retention was better. The place was very accommodating of staff-- the DON would them pick them up if it snowed because many of the aides didn't like to drive in the snow and they even allowed school aged kids to come in on school holidays if childcare was a problem. Dad loved when the kiddos came.

Checking ratings can be hard post-COVID. A number of places near me were sold or otherwise rebranded. This is probably related to distance themselves from the numbers of people associated with the facility that died in the pandemic. Another thing that has happened near me is that a facility might be sold by the parent company after an incident like you described-- they sell it to a new company and rebrand it often with new staff. There's one very nice facility near my doctor's office that has been sold and rebranded 3 times in the last 12 years.

Regarding the outdoor space. Depending on where you live, this may be less of a deal-breaker than you would know. Dad's was a pretty large backyard like space-- I'd guess maybe 75 x 25 yds square. There were some raised planters for those interested in gardening as an activity and they decorated with lights at Christmas. His room and the dining room overlooked this space which was nice. It wasn't always available to residents. If it was too cold or too hot or rainy/snow-covered it was closed. On a perfect day weather-wise the doors might be open but if a jacket was needed, residents needed to ask to get the door opened so staff could be sure they were dressed appropriately. There were usually hourly well checks during the day, but if residents were outside, they needed to have eyes-on every 20 minutes which meant the garden wasn't open during meals or while aides were getting residents ready for the day.

HB

HKC

https://alzconnected.org/discussion/67006/so-many-questions-ups-and-downs-rapid-decline-toileting-issues-when-to-move

Hi Laura,

I am new to this chat and ALZ but as I read your post, I felt like I could have written your message. My mother is 86 and initially diagnosed with mild cognitive disorder with vascular dimentia.

My dad and I are her primary caregivers. I finally took a leave of absence from work on FMLA. FMLA permits 12 weeks or 480 hours with your physician’s sign off. It could be intermittent or continuous. When that runs out your state or city/county may have additional laws to permit a longer leave.

my mom was on Aricept recently and we observed increased anxiety, confusion and sleeplessness. After she was on Martizapan for just 1 day, she had a TiA (transient ischemic attack). We discovered she also had a UTI, dehydration and very low blood pressure. Btw, if you suspect UTi, test repeatedly as my mom initially tested negative twice before she tested positive and I noticed significant decline during that time

As to your question about moving your mom, every time we traveled or placed my mom in a new environment, her condition declined. She still lives at home with my father but I wonder for how long since her condition continues to decline dramatically. There is no right or wrong decision- whatever you decide will be the right one for yours and your mom’s circumstance

lauraleaf23

https://alzconnected.org/discussion/comment/188245#Comment_188245

Thank you HB. I can't seem to find many places like that, and I'm in Southern California, so I feel outdoor space to walk around is important. Almost all the places I'm finding are big CCRC's with a memory care section- maybe one of these would be okay. Thankfully money is not that much of an issue, so we ~should~ be able to find a place! YES about the rebranding. When I looked up this place I'm considering on our state social services site, their license is from January 2023, and I can't seem to find any past info. Reviews from various sources look good, but I'm always a little leary about those. Can I company pay money to have reviews removed?? Where is a good place to find unbiased reviews? The marketing director has "LVN" behind his name, but on his card it says "License number pending" and I can't seem to find him in our state database of licensed health care workers... I just called the hotline, and I'm waiting for a care consultant to call back, so maybe they can help me with finding an appropriate place.

lauraleaf23

https://alzconnected.org/discussion/comment/188259#Comment_188259

Thanks so much. You and your dad are taking on a LOT. I considered moving her in with me, but it would be such a huge lifestyle change, and I would need to hire round the clock care, because I can't be waking up in the middle of the night multiple times to care for her. With the UTI- I had her tested, and while we were waiting for the culture, they put her on an antibiotic. I've thought about having her tested again, but would the treatment be any different? I guess it wouldn't hurt to test again. Was your FMLA paid? I'm afraid of taking any of that time now because I know I will ~really~ need the time later down the road. Thanks.