Live-in Companion for Mom with MS Dementia

KristieT

My mom is still high functioning but she really can't be left alone because she gets very disoriented and confused and won't prepare meals or take her medication. For safety and security we need 24/7 care or very close-at least during waking ours in her home. 

We need support but not necessarily from a certified nurse or home health care provider. Does anyone have any options for this type of service. The person would be  needed to work 40-50 hours a week. We are trying to keep her  as independent as possible for as long as possible and she really wants to stay at home. 

Any advice is greatly appreciated. 

loveskitties

You also need to consider could she make the right choices if an emergency occurred.

If not, just having companion during waking hours is probably not enough.

If you are determined to have in-home care, you might also need to consider splitting the time between a "companion" and some sort of aid who can dispense meds.  Many "companions" don't want to or can't legally dispense meds.

I understand her desire to remain in her own home, but as you describe it, it sounds like an assisted living facility would be what she needs.

Hope you are able to find the help you need and want.

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MN Chickadee

It sounds like 24/7 care is definitely needed. Even a couple hours unsupervised during the night can lead to trouble. PWD are prone to getting up in the night to mess around, this could lead to trouble with a kitchen  appliance, wandering off, or who knows what. The issue with hiring a companion who isn't a nurses aide or similar is that you need someone trained in dementia. This is a very specific skill set, so just hiring any nice person looking for work may not be a good thing or work for long. Also, her needs are likely to change drastically soon. She is likely to need help with all aspects of daily life before too long, such as toileting, bathing, personal care etc. So you want to be set up with people who can manage that. 

Full time care in the home is difficult to manage. Most people who succeed have one or more things going for them - lots of family local and willing to pitch in and take shifts, lots of resources in the community (large workforce to hire, adult daycare etc) and/or plenty of money to hire help, modify the home to make it handicap accessible, and spend on whatever they need. If a worker calls out sick the family has to be able to cover it. Same for vacations - weeks at a time missing someone who covers 8 hours a day. There are many ways to care for our LO and no one size fits all. It is my humble opinion that sometimes memory care is the best thing we can do for our LO. There sometimes comes a point where the house, all its contents, trying to keep up with daily life is unfair to the person. They are using all their brain power on just survival in an overwhelming setting. My mother was a total ball of stress those last months at home. Worrying about what we were cooking, feeding the pets, worrying about all the maintenance and grass and plants and this and that, was that the mail man or an intruder, taking apart the contents of closets etc. After her adjustment to MC all those stressors were gone and her anxiety came way down. I think she actually became more "independent" then, or at least more content. She was thriving and able to put all her energy into forming bonds with some other residents, activities, and visits with family. MC is kind of like the movie groundhogs day every day and most PWD thrive on that routine. They know what to expect, not much changes. All by design. A good one has activities geared for a PWD and a pace that suits them. So it's not all bad if you have to move her from her home. You may find a combination of this works for you, bringing in help for a while and then moving her. No PWD wants to move but sometimes as their loving sons and daughters it's what we need to do to keep them safe and well cared for. 

Good luck and let us know how things go. 

Edited to add - we found adult daycare extremely helpful in the middle stages. It was a shift we didn't have to cover at home, total respite for us so we could get things done around the house, cheaper than hiring someone at home, and they kept mom busy and socialized. If there is that option in your area you might find it a useful stopgap.

mommyandme (m&m)

When my mom started down the dementia path, we hired in home help six hours a day, three in the am and three in the afternoon/evening, 7 days a week.  My brother and I lived in two separate states from my mom.  It wasn’t easy to manage long distance. The morning help would help her dress, have breakfast and meds.  Would also take her to appts and make sure she bathed. They’d make sure a lunch was prepared and in the fridge for later. Afternoon shift would make sure she had dinner, meds and was ready for bed then she’d get herself to bed. She was ambulating fine then.  My bro and I knew someone would be there “soon” to check in on her.  Then we went to two four hour shifts.  Then we got cameras which saved many days and were a proxy for 24/7 care per her neurologist until we had caregivers on hand at all times.  On her alone time we would still be able to see what, where and how she was.  We had friends and neighbors that could lend a hand if needed. Then the physical 24/7 happened, which was harder to manage long distance but for 6 mos we figured it out.  Fortunately a couple of her caregivers became good friends.  

Then we moved her in her own home directly behind mine. I’ve been her primary caregiver for almost two years now. She’s never alone and is barely ambulatory.

We found caregivers at different home care companies, none are nurses or CNAs.  We also used Care.com to find a lovely CNA caregiver that helped us before we moved her and we still stay in touch.

The caregivers could put out moms meds as long as it was clear what and when she needed them.  We had a number of pill organizers prepared weeks in advance for that purpose.  Mom could get them in and swallow them fine up until about a year ago.  Getting her meds in with caregivers wasn’t a problem in our situation. 

Not sure if any of my story helps. I hope you find what works for you and yours soon.  

harshedbuzz

KristieT wrote:

Hi and welcome Kristie. I am sorry for your need to be here but happy you found us. 

My mom is still high functioning but she really can't be left alone because she gets very disoriented and confused and won't prepare meals or take her medication. For safety and security we need 24/7 care or very close-at least during waking ours in her home. 

I'm not sure what in what sense you consider her "high functioning" as it sounds as though she is managing any IDALs and is confused and disoriented. Your description sounds rather like stage 5 or there abouts- able to self feed but not able to prepare meals which is generally seen at the start of the later stages. 

Sometimes it's useful to consider stage in an age-equivalent- not to infantilize an adult but as a shorthand for what is safe at this point.

Stages of Dementia Dr. Tam Cummings

If she's on the cusp of stage 5, she might have skills akin to a 10-12 year old. So maybe OK to be left home alone for a few hours but not overnight. The ability to do this will fade in the coming months-years, so you'll need to revisit it anyway.

But first you'd have to be certain she still has the wherewithal to recognize an emergency and respond appropriately. My mom left my dad alone longer than she should have based on him being very verbal and seeming OK to her. I stayed with him one day when the HVAC system was being installed. She didn't trust dad not to ask crazy things of the crew, so I was there to answer their questions. They set off the smoke detector soldering and yelled out to let us know. Dad did not process any of this at first. He sat there for about 30 seconds and asked me what the terrible noise was. I explained as he sat there. After about another minute, he stood up and toddled off to tell my mom having forgotten she wasn't there. At no time did he attempt to call 911 or instruct me to. I a real fire he would have died. He never stayed home alone again. 

We need support but not necessarily from a certified nurse or home health care provider. Does anyone have any options for this type of service. The person would be  needed to work 40-50 hours a week. We are trying to keep her  as independent as possible for as long as possible and she really wants to stay at home. 

You could probably hire a team. Initially she'll likely need help in the morning and evening. Overnight care is likely more necessary than afternoons at this point. Have you ever stayed over with your mom for several days to get a sense of what she's doing in the evening and overnight? I stayed with dad when my mom was in the hospital as I lived a distance from them and was gobsmacked by his shenanigans- yikes. Companion care would be available through an agency; sometimes there's an upcharge for PWD. Care.com might be cheaper as the agency takes a cut but you'd be on the hook for doing legal payroll, extra insurance and scrambling to cover call-outs and no-shows. The best route to finding caregivers is often word of mouth with pricing akin to Care.com. 

You could also look into a live-in. This can be cheaper than an agency (dad's companion caregivers were just over $30/hr 3 years ago) but you have to be careful of issues like running into overtime. You'd want a contract drafted to protect you against tenant-issues if things didn't work out. And you'd have to provide coverage for days off and vacations.  My neighbor did something similar with his first wife- I don't know what it cost, but the year after she died he put in 3 new baths, a new kitchen and took his new girlfriend to Italy for a month. 

Any advice is greatly appreciated. 

I can appreciate wanting to keep her home, but do understand this is very expensive unless you have family willing to cover a fair number of shifts. 

The problem is, as the disease progresses, you might not realize when 24/7 care is needed with disastrous consequences. A few years ago, there were a couple of adult daughters who were looking after their mom with a goal of keeping her in the home in which they'd grown up. Daughter A was an 11-7 RN who came each day to get mom up, showered, gave meds and breakfast and left mom a plated lunch. Daughter B was a high school teacher who was able to pick mom up by 3pm- they'd run errands, have appointments and dinner and a little TV before she took mom home and got her meds and ready for bed. They split weekends with mom. And it worked really well until it didn't. Mom went outside one night wearing only a bath towel-- her body was found by a neighbor walking a dog. 

HB 

Doerger

Did you get a specific reply on this? My mom is also active and needs engagement. All we get from home health agencies are CNAs who act as babysitters. I work during the day and would like to find an agency that has actual care plans for patients, set goals, and updates them.  

Most of what I'm finding with dementia care is institutionalization or babysitting. Where is the thoughtful care? Let me know if you find anything. Vague advice is mostly what I find.

harshedbuzz

Doerger-

Hi and welcome. I am sorry for your need to be here, but happy you found us. 

Generally speaking, you'll get more traffic if you start your own thread rather than add to an existing one.

To your question, that's a tough one. Not all HHAs are interested in or trained for dementia care and IME, agencies don't seem to put much effort into matching clients unless they have to. In the early going our agency sent some real duds until I called and spoke with them about how things weren't working out. The last aide they sent was perfect for dad. My friend had an aide for a couple years who even spoke mom's native language with her; they cooked, puttered around the house and did puzzles together. It was great until mom progressed, and the aide asked to be reassigned to a new client who wasn't as impaired. 

Are there any good day programs in your area? These can really vary, but a good one could keep her more engaged especially if she's able to feel as if she's volunteering there. There is even a place that offers elder day care near me. It was started by some medical professionals to care for their parents while they worked. It's open 6am-6am and offers all kinds of add-ons like hair appointments, mani/pedis, PT, OT, showers along with meals and activities. 

Some people have better luck with care.com or word-of-mouth to find a companion who might take their PWD out for lunch or to get hair done or shopping. 

HB

MN Chickadee

Doerger - for us the thoughtful care you mention was adult daycare. We had an excellent one near us. I'm sure they aren't all the same but you might look into it. Ours had a number of very caring staff plus some volunteers. They did art, went on field trips, had musicians and pets come in, had chats and exercises. We had quarterly care conferences to discuss how how my LO was doing and how they could best meet her needs. She was very able bodied and energetic when she started the program and they were able to keep her busy and everything was very dementia informed.