Becoming a personal care surrogate

PianoGirl

Hi!
I am brand new to this group and so appreciate the networking with others who are navigating the care of a parent with Alzheimer’s.
I’ve been trying to be proactive about this. My brother and I hired an elder law attorney. We established power of attorney for my brother and Healthcare proxy for both. He and I work together to take care of my mom. My brother takes care of the finances and I take care of the day-to-day stuff.
I just finished the process of applying for the frail elder waiver. I think we are finally starting to see the possibility of getting help or my mother who lives alone with Alzheimer’s.
We installed cameras around the perimeter so that if she goes walking, we know which direction she went and what she’s wearing and what time she left. I put AirTags in her shoes so that I can track her. We have cameras in strategic places inside the house like the kitchen, hallway and her favorite room to hang out in. She has a medication dispenser that I fill. I go to all her doctors appointments.
Establishing a personal care attendant is my current “ mountain of learning”. I would be eternally grateful for any insight on those of you who are the surrogate for your parent in the PCA program. What are the “do” things (is there a checklist). What are the things to watch out for? How do you manage being a manager of your parent’s care and still be someone with a full-time job with their own family to care about?

PianoGirl

Are there surrogates out there? Who chat about this kind of stuff?

harshedbuzz

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

I'm a little confused by the terms in your post and hesitate to answer for that reason. I wonder if maybe other folks might have a similar response.

It sounds like you have obtained some kind of funding for care in the home for your mom. You and a sibling both provide some care, but it sounds like he's the POA and you manage more day-to-day things. When you say surrogate for the PCA program, does that mean you are essentially the "boss" in the work client-caregiver relationship vs your mom who is cognitively impaired?

I can only speak to hiring a HHA through an agency. In that situation, we generally flesh out what you'd like the aide to do with your LO. The aide we got for dad was intended mostly to babysit him as he was reluctant to accept care from anyone but mom. Mom only had 15 hours/week during which she ran errands and maybe had a quiet cup of coffee somewhere.

My friend worked, so her aides came for 6 hours daily and engaged her mom in activities like prepping dinner or baking, they'd have a simple lunch the aide prepared, play games together and go for walks. As mom's disease progressed, the aide would manage mom's shower and laundry and do puzzles with her or take her for a walk in her wheelchair.

One caveat is to secure your valuables. We had an aide make off with mom's jewelry; this same deadbeat accidently left another client's checkbook at mom's house.

HB

H1235

Welcome. This is a great place for information, advice and to vent. We are all in this position in some way or another. It sounds like you have set a lot of good things into place. Does she still use the stove? Forgetting food on the stove could be very bad. Some have disconnected it, other use that as a sign it’s time for other arrangements. I will attach a few resources you might find helpful. The first is a staging tool. Notice it gives a rough age equivalent at each stage. You can think of a person with dementia as almost aging backwards. This may help you as you consider is she is safe to say at home alone. It will not only help with where she is at now, but what might be coming.

DBAT 4.pdf

This is a good article that really explains a lot about how the mind of a person with dementia works or doesn’t.

understanding-the-dementia-experience.pdf

A few things I have learned from my experience so far and the great people here…

Never argue or correct. Distract, change the subject and if it doesn’t matter, just agree

You need to do what is best for her- not necessarily what makes her happy(because that might not be safe). This will mean making difficult decisions that she doesn’t agree with. You can’t always ask for her input, because she probably will not be able to consider all the complicated angles an reasons that need to be considered.

Do you have a plan B in mind? Living alone is not going to be safe for her for long. If assisted living is something you are considering there can be waiting lists. 24 hour a Dayi. Home aids are expensive and can be difficult to monitor no shows.

SDianeL

https://alzconnected.org/discussion/comment/249725#Comment_249725

Welcome. I don’t understand the terms “surrogate” or PCA Program, however, everyone in this group are caregivers or have been. Read the book “The 36 Hour Day” which helped me after my DH diagnosis. Soon your Mom will not be able to live alone. You will either need to move her into your home or hire 24 hour caregivers. You should also have a plan B for a memory care facility asap. Tour some, choose one and get her on a waiting list. I don’t believe you will be able to continue working if you are caring for her. Caregiving is mentally and physically exhausting. This is the place for info and support. Come here often to ask questions or to vent. We understand what you’re going through.

terei

I also am unfamiliar with those terms

ARIL

I do not have direct experience of this either, but I know that in some places there are Medicaid-funded Personal Care Attendant (PCA) programs in which individuals provide care as “surrogates,” often for relatives, for pay. Massachusetts has such a program, for example.

Although questions about specific processes or checklists in a PCA program would need to be directed to people who run the program or people with expertise in Medicaid in your state, caregivers on this forum are familiar with the physical and emotional experiences of day-to-day care, especially for parents or spouses. Many of us have full-time jobs and other responsibilities.

Sorry about your mom’s situation. This is a hard road to walk to be sure.