Options for Mother with Dementia after ALF

yogiprincess

After 2 years in ALF my mother is in need of a higher level of care - primary because of her needs at night like toileting and her inability to call for assistance when she needs it. ALF is giving me some time to decide what I will do, but I am having a hard time with the options I am considering - and would love different perspectives. An important note is that in the past two years, I've had cameras in her apartment and I monitor them several times a day + I've hired private CNAs to spend the day with her. So, I am looking to maintain both. Here are the options and the issues I have with each (this is in Orlando, Florida):

1. Memory Care. I have not found a MC that allows me to have a camera in the room. Their "reason" is that in MC other residents enter other rooms and they have not given consent to being recorded…Because of this, I am working with my Phycologist to help me accept that I will loose the ability to not monitor her regularly, and that I will have to trust that MC cares for her consistently and in a dignified manner. So far I've toured 3 places and neither of them make me feel like I could trust them…I will continue looking with the hope I find one that gives me more confidence.
2. Rent an apartment and hire 24 hour care on my own. I know this will be a serious undertaken, both financially and mentally (I have a demanding full time job). But given that I cannot move her with me (due to space and working hours), I may have to make this type of sacrifice.

Both options come with pros, cons, pain and sacrifices…For those of you in similar situations, what are your thoughts on what I am considering?

caregiving daughter

I would suggest you do your best to identify a memory care you feel comfortable with,. Doing so may take 15 tours. You then make the best decision possible and try to find peace with the fact that you cannot control everything. Perhaps the professional therapist you mentioned could help you with that. Before you decide, try to catch family members of other residents and ask their opinion of the facility and its' employees. Try to assess retention of caregivers. You want happy caregivers who then stay with their employer. After placement, I would highly recommend that you visit at all different times. Do not allow the facility to get used to you being there every Tuesday and Thursday night—mix it up. When issues come up, and they will, make gentle requests to staff. If the situation is not resolved, sit down with the nurse in charge.

Regarding assembling you own care team, the costs and level of coordination could be prohibitive. On your own, you would likely need two caregivers, one for during the week and one on weekends. You would be doing all your own interviewing and background checks. If one of them falls ill or decides to quit, you would be starting from scratch to replace them. While they are out, you would need to step in yourself or hire someone with which you have no familiarity. With a service, you would be asked to employ likely three a day, in eight-hour shifts. The service would have the flexibility to replace a caregiver whenever they feel the need. Therefore, you could have people coming and going. When I did the analysis years ago, this last method far exceeded the cost of memory care.

Please hang in there and I wish you the best in developing a care plan.

JulietteBee

I was recently in a similar, yet different situation.

My mom was in an ILF when the psychologist documented that a move was necessary and she needed more hands-on care.

Understanding that you say your mom cannot live with you, I will tell you that we did. We packed up our house and bought something larger to accomodate mom. As of this week, I am in process of hiring in-home care via an agency. I am home all day, so I would opt to have the caretakers do12 hour shifts from 9P-9A. That would help me to get ber undressed for bed and get her dressed in the morning before they leave.

Yes, it will be more expensive but mom never wanted to go into a home and I will spend my entire expected inheritance/estate on her care. She & my dad worked extremely hard to acquire what they did. I do not want any. What I do want is to afford her the opportunity to die at home with family.

All the best in your decision making. Hugs!🫂

harshedbuzz

@yogiprincess

A couple of thoughts.

I have heard mixed results asking to install a camera which makes me wonder if this isn't something related to state mandates rather than a "reason" as you suggest. I do know some people who have used Echo devices to drop in; these seem to get less push-back.

I am a little confused about help with toileting in the context of your mom not being able to ask for assistance. Is this about overnight incontinence care or is it related to someone routinely checking through the night to take mom to the toilet? If it's the latter, MC might not realistically meet your expectation of keeping mom dry through the night.

Most MCF have minimal staffing overnight. Dad's MCF did a well check hourly during the day, but overnight it was every 2 hours. I suppose you could have toileting added at each check in the care plan but that would mean waking mom through the night.

Hiring staff comes with pitfalls. Unless you went through an agency with a very deep bench, you'd have to deal with vetting, interviewing, payroll, additional liability insurance, vacations and scheduling issues as well as "no shows". Care through an agency is expensive. Nine years ago, pre-covid mom paid over $30/hr for dad's aide; more for overnights, weekends and holidays. 24/7 coverage, especially if mom is a 2-person-lift, would be eye-watering.

It might make more sense to hire an aide for overnights in the MCF if you want someone focused solely on her. Most MCFs are OK with private aides coming in and, in some cases, will insist on them at the later stages.

I can appreciate the trust issues with leaving a vulnerable person who cannot report poor treatment. This isn't easy. That said, my take is 180 degrees from yours. I was more comfortable with dad in a congregate setting with a team of carers and the families of other residents coming and going. YMMV.

HB

caregiving daughter

The previous poster's idea of hiring an overnight companion, at MC, is compelling. You likely could go with an outside agency so there would be no conflict of interests, rather, person could give you an honest opinion of what goes on at night.

Victoriaredux

It's hard to "let go" , out of concern we want everything perfect - but PWD aren't the easiest and staff has to work around their behaviors. And no matter how attentive , how caring the staff the patient will decline .

Having been through having 24/7 live in caregivers with one of my PWD -I'd never do that again. One started with an agency then talked the PWD into a direct hire [ violation of contract] before the DPOA kicked in then they filtered and stole from the house ; then started in on financial issues .

After they were fired an agency was used to replace her and they didn't do a background check. ALWAYS ASK WHEN Was the last background check done- what was checked ? It was a nightmare- that person had a criminal record that was horrifying .

If you aren't going to be living with your LO - ask yourself who is watching the watchers? That's an advantage of MC - their assets and licenses are on the line. Read their facility inspection reports. Get to know the staff - bring cookies , remember names, hanging photos of your LO in earlier days - makes your LO unique - not just another gray haired person in sweats. Talk to other families as you run into them in halls . Their eyes are better than a camera .

yogiprincess

https://alzconnected.org/discussion/comment/276200#Comment_276200

Thank you very much for your thoughts. I am doing MC tours every week…

yogiprincess

Love the idea of an overnight private caregiver! Thank you!

yogiprincess

Re: use of cameras - in Florida it is not a state mandate, it is up to the ALF and/or MC companies to decide if they want to allow it. So the reason they give for not allowing is what I mentioned in the post.

psg712

https://alzconnected.org/discussion/comment/276284#Comment_276284

You may want to ask the MC facilities you are considering if they have any requirements about private caregivers. Most will welcome the extra eyes and hands, but some have only specified agencies they will allow into their facilities.

April23

When my dad needed a higher level of care, I placed him in a residential care home (RCF here). I don’t know if you have anything like that where you live. Several of the residents have electronic monitoring but I have never felt the need for it. I also have a private caregiver with him part time during the day but that is because of additional needs that I feel need special attention, it isn’t a reflection of the care he receives, which is excellent.

yogiprincess

https://alzconnected.org/discussion/comment/276308#Comment_276308

Thank you. Do you mind sharing what state you live in? I just discovered the concept of an RCF. I thought the options were the standard pretty big MC…but I think my Mom could do better in an RCF. I would do the same you are doing, hire a private to keep her company during the day. I am touring two homes tomorrow. Keeping my fingers crossed.

April23

https://alzconnected.org/discussion/comment/276376#Comment_276376

I’m in Texas. My dad’s place only has 8 residents and two caregivers. It’s a beautiful home with home-cooked meals. My dad is doted on and spoiled rotten! I wish you luck with your search.