Caregiving for Parent when you have a full time job and a teenager

sfrench

Good morning. I am new to this forum and located in Wichita, KS. My mother has some memory issues resulting from an unknown stroke about a year go but discovered after she had a fender bender last March. I am 55, work a full time job, have a 16yo at home and two dog :smile: . She has always lived independently (my dad passed in 2017) but is now having severe issues remembering day to day things - eating, taking meds, how to use her phone, microwave, dishwasher, etc. I did manage to stop her from driving. Her sister has been her for a few week (my mom will be 81 and her sister is 82) and taking care of her and told me last night that she convinced her to move in with me from October to March then go back to her house when she comes back to Wichita for her dr appts in March and stay at her own house for a few weeks. I do have cognitive testing set up in November to understand exactly where things stand. I am navigating this as best I can but I am so lost. My daughter is in nursing school and a CNA/CMA/HHA so has helped a lot and has worked at several places in memory care and AL. My mom is dead set on "dying at home". I am navigating her long term health policy, understanding my DPOA and managing her money and my decisions, etc.

I don't want to be selfish and say she would be better with in home care at least 3-4 hours per day, or in AL - if she would even qualify at this point, but the expense are so high! If she lives with me, I do travel at times for work, visit friends, travel with girlfriends, etc., and I do not have anyone I can call on to stay with her.

I really need some good thoughts, prayers and any advice. Thank you.

M1

Welcome to the forum. Your mom likely has anosognosia, which means she doesn't recognize her deficits and need for help, and you are unlikely to convince her, talking about it will just make her defensive and upset. Safety has to drive the decision making. Sounds like she needs assisted living at the very least. Have you talked to an elder law attorney about how to qualify her for long-term Medicaid?

It is very hard to have to make these decisions without her consent, but that's the position most of us find ourselves in. Dying at home is unrealistic-- a wish but not a plan.

H1235

I agree with M1. No one wants to go to AL or a nursing home, but the reality is sometimes that’s what is necessary. If she is struggling to use her phone, microwave would she know what to do if there was a fire? Would she think it’s small I can put it out? Even a daily care visit for 2-3 hours may not avoid a problem like this. You don’t want to wait til the accident has happened before you consider a move to AL. Having her in your home from October to March is a long time. If you’re working and away from home I just don’t see that working. Some AL places may also have a waiting list. You mentioned expenses, everything is expensive no matter what route you go. Im glad you have the DPOA and you have managed to stop her from driving. Those are two very big hurdles. It’s good you have an appointment to get her evaluated. Many here have found it helpful to send a message to the doctor in advance explaining with examples what you are seeing. Explaining in front of your mom may cause her to get angry and defensive (speaking from experience). I would also ask the doctors opinion on the kind of care she needs, is she safe being in the home alone, living alone etc. While the evaluation is important I would not wait for that. At the very least I would recommend looking into your options. Medicaid, Medicaid waiver -qualifications, AL facilities costs etc., in home care costs and assistance available. Local commission on aging may be a good place to start. Good luck. I hope there is something here you find helpful.

mabelgirl

My thoughts are we must do what is right for the family not just the PWD. It does sound as if your family would fare better with mom in a good AL that the family can visit frequently than in her own home. When my mom was at the point yours is, she nearly burnt my brothers home down ! There are just so many things that can go wrong. I don’t consider it selfish to provide the best care for your mom without scarifying your life as well.
Prayers for peace in your decision making.

psg712

Your mom sounds a lot like mine was a few years back. It just doesn't sound like you can be sure she is safe at home alone anymore. If she stays with you, you would have to be home and alert to her activities all the time, or get someone else to watch her when you are out. AL nearby could allow you to visit often but be assured that she is being monitored when you cannot be there.

NizhoniGrrl

Does she have LTC insurance? Getting all of the diagnostic tests and documentation together is your first priority. This is all very disruptive to our lives, even when they are in a facility, unfortunately.

Anonymousjpl123

@sfrench i live alone and work full time, so caring for my mom at home was not an option. It has taken a herculian effort, but I found places (first AL, then MC lite, now MC) where whe is comfortable, had friends, and can thrive - whatever that means. You know your mom and yourself best, but as family we tend to overestimate our loved ones. When i moved my mom to an AL in my state, I envisioned her visiting nearby museums, walking outside, socializing, and enjoying activities. Instead she stayed inside virtually all the time. She didn’t want those things: I wanted them for her.

Now, I show people - including those who have experience caring for a loved one at home - photos of us and her friends in her place, and they are shocked. That there can be some good, even in the midst of this terrible disease progressing.

Whats important is that she is safe, not alone, and has care. What that looks like can be a lot of different things.