Next steps for outdoorsy/active and healthy stage 4/5 Alzheimers

coastal_kid

Hello there,

I've been lurking on this forum for a little while as I determine if and how I engage in this community. What incredible outpouring of support and advice I've witnessed as I seek the silver bullet I don't think I'll find.

I live slightly remotely from my parents. My dad is 79, an introvert and slightly reclusive who's essentially woken up for his entire life, put his boots on and gone outside. He's been an academic and deeply skilled carpenter, and his only hobbies have been backpacking, camping and making things with his hands. My mom is 75 and his caregiver.

Dad's stage 4/5 at this point. When he's clear, I get almost 100% of the essence of him, telling stories about college and our backpacking trips together. When he's down, he cant' remember how to brush his teeth or draw a bath. More lows than highs recently. He tried to refill the water reservoir of a handheld (plug-in) steam cleaner by submerging it into a half-filled bathtub a couple of weeks ago. Tonight, my mom tells me he couldn't remember how to draw a bath or take a shower.

Mom has a lot of life to live, she's 75. She's a locally famous artist who holds art classes in her studio and wants to be a part of my young kids lives. She can't do those things anymore because she's following dad around the property making sure he's safe, has water, snacks, and is avoiding the power tools as much as possible.

(get to the point)

We have toured a couple of memory care facilities to find a place that might not make him lose all will to live. It's early summer now and she doesn't think she can handle another winter trying to care for the most stubborn human alive as he continues to unravel. And I don't blame her. But my god, the thought of putting dad with all of these old people in various stages of decay (please don't take this as my full judgement, I'm just trying to illustrate my perception) is gutting. To me, he seems like a young buck with solid moments where he's not utterly confused (yet).

I have a few questions, if you will:

1. What are the best services you've found that support the primary caregiver to give them a little bit more longevity?
2. Does anyone have experience with memory care / foster care for reclusive introverts who love the outdoors? What did you find and what was successful? I need to look into various foster care options in the area since I understand that some folks have better experiences with those, but its' overwhelming due to the lack of accessible information online.
3. Am I tricking myself about anything here? Give me real talk if it looks like I need it :)

Thank you <3

[Deleted User]

The user and all related content has been deleted.

M1

Welcome to the forum. My partner of 30 years is a reclusive introvert who loves the outdoors, also worked her whole adult life as a landscaper and a custom contractor, so for most of her adult life got up at five, put on her boots, and left the house in her Toyota truck to spend most every day working outside. Retired to a 150 acre farm in 2006 that she has made into a showplace and then developed dementia beginning in 2014. We live in a rural area, and finding help at home proved impossible (especially during the pandemic), plus there was the dynamic that she wasn't about to accept help on her own territory (she never recognized her deficits). But it's very hard to dementia-proof a farm. She had to go to memory care in March 2022 after threatening me when I wouldn't let her drive. Got hospitalized first for three weeks, which was disastrous because they messed up her meds, and that made things much worse. Our beloved primary care doc who knows us both well just flat told me I couldn't take care of her at home any longer.

It's been a struggle. My first choice facility wouldn't/couldn't take her last spring after the messy hospitalization, so the alternate facility I chose proved to be way too small and claustrophobic for her; plus there were multiple, recurring issues of extremely poor communication with me. She was miserable, and couldn't stand for me to visit because she just wanted to leave and didn't understand why we couldn't. So I decided in the winter to try again with my first choice facility and was successful this time, we just moved her two months ago, and it is a night and day difference. Biggest differences are: first of all, communication with the staff is much, much better and they are generally better staffed and more experienced; but also, it's a physically larger facility with more light and larger indoor and outdoor spaces. This has made a huge difference in her tolerance of the place and is something I would definitely take into consideration when you are assessing your choices. There is much room to move around, to be outside, and if not comfortable in one space, easy to move to another. There is a garden, a small aviary, a resident cat, and a greenhouse.

What has been less successful is that she is still an introvert and despises most group activities, including being reluctant to eat in a group setting. She is/was a fairly accomplished amateur artist, so I have set up a table in her room in front of a window where we are spending a lot of afternoons drawing and painting (under the guise of her "teaching" me), and that is proving a good way to spend time together. She has always been charismatic and still is fairly socially interactive and aware; she can make friends with the staff easily, but is leery of making friends with other residents.

Her disease is progressing, which in some ways is making things easier, too. She is more accepting of being in this facility, although we are still using a bit of a ruse--they are doing physical therapy on her bad back, and that is working as an excuse as to why she has to be there. Plus she has forgotten our farm, and has forgotten most of our past life together (we've been partnered for 30 years, but she told me yesterday that I haven't told her very much about myself--so the holes in the memory are getting ever larger). At this point, progression of the disease has some mercy to it.

I wish you well in finding something that works. I do think it is much more difficult for introverts to accommodate to the exigencies of life in a group setting.

harshedbuzz

Hi and welcome. I'm glad you unlurked yourself.

Does he still have a real interest in these activities? One of the earlier symptoms of dementia is a loss of interest in activities that were previously pleasurable for them. My dad had been an educator who devoured books, but as dementia took hold his ability to enjoy this activity waned as his short-term memory made recall of what he'd just read difficult. Dad was also an avid DIYer who remodeled several houses in the past and while he talked constantly about improving spaces, he didn't have the executive function to plan, initiate or execute even the simplest idea. He did, however, enjoy talking about it on repeat.

Given that you are at a distance, perhaps you have a rosier view of dad's current abilities as they impact your mom. Two thoughts come to mind on this. Firstly, man PWD have an ability to showtime for short periods which can make it seem like their day-to-day function is higher than it actually is. This trait is frustrating for caregivers because it causes well-meaning family to get a false sense of their day-to-day. Sometimes cognitive reserve (which one would expect to see in a retired academic like your dad) will mask deficits for a time and make the PWD seem to be less far along than they actually are.

The second thought is that care needs to be scaled to the needs of a PWD at their worst not on that rare day when the misfiring circuits connect or their son is in from out of town. Also, a PWD is considered to be in the latest stage for which they have symptoms/behaviors even if they do seem to retain certain skills from a higher stage. It could also be that your mom is not being entirely honest with you about certain aspects of dad's behavior as a way to protect his dignity. My mom claimed dad wasn't incontinent until I walked in on her cleaning up after the feces hit the fan.

FWIW, showering and brushing teeth are ADLs. He needs assistance to complete- perhaps mom talking him through the process or getting the shower temperature set, that's a solid stage 5. But if he can't turn on the water or doesn't know what to do with the toothbrush, that's more of a Stage 6 behavior.

Seven Stages of Dementia | Symptoms, Progression & Durations (dementiacarecentral.com)

Mom has a lot of life to live, she's 75. She's a locally famous artist who holds art classes in her studio and wants to be a part of my young kids lives. She can't do those things anymore because she's following dad around the property making sure he's safe, has water, snacks, and is avoiding the power tools as much as possible.

That's the sad part of dementia. When one person has the disease, the whole family suffers with it. It's worth considering that you mom has a life expectancy of 88 and that dementia could last 10-15 years. Would you hire a 75-year-old woman as a caregiver to dad? Do you have a Plan B in your back pocket should you mom become too ill to continue or die before him as 1/3 of all caregivers do?

(get to the point)

We have toured a couple of memory care facilities to find a place that might not make him lose all will to live. It's early summer now and she doesn't think she can handle another winter trying to care for the most stubborn human alive as he continues to unravel. And I don't blame her. But my god, the thought of putting dad with all of these old people in various stages of decay (please don't take this as my full judgement, I'm just trying to illustrate my perception) is gutting. To me, he seems like a young buck with solid moments where he's not utterly confused (yet).

Again. Care needs to be appropriate for dad at his neediest and most confused.

But I completely feel the pain in your heart around touring appropriate MCFs and picturing your dad in such a setting. The thing is, a quality MCF will allow residents to age-in-place which means you will have residents on a spectrum of decline from about stage 4/5 until the end. Typically, staff will try to encourage him to connect with others who are more where he is. Dad never bonded with any of his fellow residents, but the staff doted on him and he enjoyed their company.

I have a few questions, if you will:

1. What are the best services you've found that support the primary caregiver to give them a little bit more longevity? Are you looking to extend your dad's time at home? Or are you looking to ease your mom's burden so she is able to care for herself as well as your dad? Is your dad the ideal patient who is generally cooperative? My dad was not for my mom. He actually got much better care in a MCF because he cooperated with the staff. Meantime, mom's health suffered. She had a couple of medical crises because she wasn't on top of her own health issues because dad was so uncooperative. As a result, she lost the vision in one eye and a lot of her independence in stage 8 which in turn robbed me of mine. I was at my parents' home 5 times a week at least during this and I was unaware of how bad things were when I wasn't there. That said, the answer might be a live-in caregiver, a day program M-F to allow mom to work and a cleaner as well as someone to do lawn/home maintenance and meals. If mom is crying "uncle", it's time to place dad. It is 100% her call to make if she needs him placed.
2. Does anyone have experience with memory care / foster care for reclusive introverts who love the outdoors? What did you find and what was successful? I need to look into various foster care options in the area since I understand that some folks have better experiences with those, but its' overwhelming due to the lack of accessible information online. Foster care isn't typical for PWD. I have a friend with an adult son in a medical foster care home because he has diabetes and autism and blames his mother for everything. He lives in a home with several adult men who have various medical needs which are overseen by his guardian who is an RN. There was a woman here a few years back whose mom had dementia plus mental health issues who was unable to care for her mom; she arranged to the state to assume guardianship and place her in care. Are you thinking of a residential care home? These can really vary in quality. The few I have seen locally would not be my first choice at all. Both my dad and my aunt were well-served in a MCF with dementia-informed care and well-trained staff. I toured a dozen places which gave me a sense of what would be best for our family. You really can't research online effectively. I found myself dropping in unannounced and asking questions of staff and family members rather than relying on the sales pitch my tour guide offered. Most of these places have a secure outdoor area, but it's more likely to be a patio and garden setting to accommodate those with mobility and spatial reasoning issues to prevent falls. Many families do hire companions to take their LOs out; there's no reason you couldn't hire a college-aged young man to take him hiking or fishing regularly. Or you could do it yourself.
3. Am I tricking myself about anything here? Give me real talk if it looks like I need it :) Maybe a little. Meantime, make sure mom has the necessary paperwork that allows you to step in as dad's agent if she no longer can because of illness or death. And make sure you are her primary agent on her POA and Advanced Care Directive as dad is no longer competent to be making decisions. -HB

MN Chickadee

I found adult daycare to be a life saver in the middle stages when my mom still had some good days and was physically very capable and mobile. It can be a great stop gap, sort of like having them in memory care part time. She started 3 days a week and we upped it to 5 after a while. This gave my dad and I the respite we needed. We just had to deal with evenings and weekends then. It tended to be more mobile folks early in the disease and the staff found activities to engage everyone. We told mom she was volunteering there and after some early unhappiness she settled in. She thought she worked there and was ready to go the minute she got up. It wasn't until incontinence set in that we had to move her to MC. I would contact your county's agency on aging hotline to see if there are any adult day programs near you. Perhaps this, combined with hiring some help in the home, would be a temporary solution. You might look on Care.com or similar. It could be you could hire a student or someone willing to come on weekends and do outdoorsy things with him to tire him out and give him some of the things he enjoys. You may have to come up with fiblets, such as this young person wants you to teach her about __________________(thing dad enjoys.) Most things that trigger issues, like his tools, likely need to be out of sight out of mind. Remove the dangerous things and put them in storage or something. He won't just move on as long as they are there. Maybe say they all went in for repair or a family member needed to borrow them for a project. He will still need pretty constant supervision....

If you do need to move him soon, know that the quality of the facility and staff are paramount. A good staff will keep a resident busy and as happy as possible. Part of it is you need to let go of his past life. He won't be able to camp and do the things he used to. Much of his normal life is over as awful as that is. Grieve that and let it go. Of course every area is different, but there are some really quality MC units in my area. The second one my mother was at is really fantastic. Part of a larger campus with AL, MC, SNF etc. (Her adult daycare was on campus as well.) They do field trips all the time. There's a company in town with adaptive/handicap accessible boating that they bring folks to a few times during the summer. They go out and get ice cream, they do a big vintage car show on site, they have a golf cart and take residents on rides through the nearby university and parks every day. They have musicians and pets brought in. There are locked outdoor terraces residents can utilize to just sit and enjoy the flowers and fresh air. Nothing will be like home, nothing will be like it was 10 years ago but don't let perfect be the enemy of good. I hope you can find something that works. Keep us posted and good luck.

jspdude409

It is difficult to see the individuals in the facility dealing with different stages of the disease and not question how you could leave your loved one there. But their reality is not yours and you have to understand they don’t see things in that same light as you or I . Look for a place where you see the staff interacting and engaging with the residents, that type of care is priceless.

coastal_kid

Hi all, thank you so very much for these thoughtful responses. Unbelievably helpful to hear an array of experiences from folks in different stages, with similar circumstances to my family's.

@harshedbuzz, responding to some of your provocations:

Does he still have a real interest in these activities? 

He recognizes his inability with executive function and – for the most part – has given away all projects around the house to hired hands, though he tries to chip away at small things on clear days. He doesn't read any longer, and has let me take his computer to archive the things I'd like to keep because reading and writing is very difficult these days. He doesn't really have any other hobbies, so he spends his time sort of cleaning up and preparing items in his pole barn/garage to give to others.

It could also be that your mom is not being entirely honest with you about certain aspects of dad's behavior as a way to protect his dignity.

In our case, my mom is ready for her life back. She's emotionally and physically exhausted, and we've luckily established a very transparent connection around how he's doing, and how she's doing. I'm making an effort to go visit alone for weekends so I can really check on needs, do punch list items, and get eyes on how (mostly mom) is doing.

It's worth considering that you mom has a life expectancy of 88 and that dementia could last 10-15 years. Would you hire a 75-year-old woman as a caregiver to dad? Do you have a Plan B in your back pocket should you mom become too ill to continue or die before him as 1/3 of all caregivers do?

This is a really helpful reality check. Thank you for this. Our plan A is that she'll be his caregiver until it's too hard, either physically or emotionally (we think before this winter). If she gets ill in the meantime, we'd put dad in MCF respite care or full time. Plan B is one of two MCFs we've found.

Is your dad the ideal patient who is generally cooperative?

My dad is definitely not the cooperative type :). Not a fan of people telling him what to do – and by people, I mean my mom. I tend to think his path may be similar to your dad's (or at least I hope).