What do I need to be realistically looking at in terms of care?

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Two things in the last month with mom:
1) She came to me insisting that the washing machine was broken and she couldn't get it to turn on. She said she pulls the dial out, and all it does is come off.
Our washing machine has a dial that you turn to set your settings, and a button that you push to turn it on. She has used this at least once a week for three years.
When I explained that you had to push the button, she was perplexed that she didn't realize that. Her old machine had a dial you pull out.


2) We had scheduled to make banana bread in the evening after dinner. She wanted to help and focused on it all day, worrying about what time we would do the ingredients, should she do some of them early, even though I assured her we would do it in a few hours, after dinner. While I was eating, she went into the kitchen and insisted on helping. She pulled out the bread pans and tried to spray them with the nonstick stuff. I explained to her we would do that in a few minutes when I was finished eating. In frustration, she brought the pan over to me and the spray can, and dumped the pan loudly next to my dinner plate, for me to spray. I said, I'll be done in a few minutes, why can't you just spray the pan yourself in the kitchen? She appeared flustered and said, "I don't know." Then she took it back in the kitchen and I had to tell her to push down the top to make it spray because she couldn't figure out how it works. She's been cooking for 50 years.


She's normally very detailed in the things she does although she relies heavily on notes. I haven't seen her forget basic things before though. This is unusual, she's normally not incompetent, even if her behaviour is sometimes odd.


She's out of it more often these days, usually when she's tired, before her nap. She's recently been sick with an infection, and taken about 4 months to recover. She was barely eating at all and was well underweight but she's been eating properly as she recovered and has started to gain it back.


As I've posted here before, she is resistant to all my suggestions regarding doctors, and to the doc's suggestions. I suggested she consider taking Omega 3's, get a vitamin D test (she rarely goes outside, ever, and refuses unless there's a doc appt), have a nutritional workup since her recent weight loss, and so on. She has the best insurance imaginable, but her answer is a stubborn "no" to even the most basic of suggestions. (She takes vitamins, she's taken them for 50 years, they're sufficient, the ins won't pay for vit D test so why bother asking). I have had some conversations quietly with the doc, but have been also walking a balance with respecting her health decisions as well. When she goes to the doctor, she is - you guessed it - "showtime" fine. Miraculously cured.


So my question is, what do I need to be realistically looking at in terms of care, home care, help with that, possible illnesses and progression, etc. She's nowhere near needing to be in a "home" and I would not go that route unless she needed nursing care that I am not equipped to provide. Right now I live with her to help but dread what may be coming and fear that I may spend the next 15 years trapped here.


I know there's a lot of advice on this site about Medicare, home care and such. We don't have any money. ANY money. (Not even life insurance, because she says Medicaid would take it anyway). I'm concerned about getting trapped into a care situation here without money for home nursing help, or having to choose a home where she would be miserable. Down the road, it's not there now, but I am concerned and would always choose to keep her at home unless the other option was medically necessary. Advice welcome, thank you.

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Aww! This reminds me so much on an elderly lady who used to have bread baking in the oven....at 4:00 IN THE MORNING! This when she was 80!! And then she had a group of ladies over for a luncheon, have a swim in her pool and play a few rounds of tennis in her court. This lady was AMAZING! I will also say she was a different kind of amazing when she forgot how to bake bread! My late mother and I made sure to get to her AL where she resided and I was so glad that we made the EFFORT-even bringing her a gift of a card and a ceramic cardinal in a pretty gift fixed by me, the younger lady as that was her favorite bird. Have extreme patience with your LO.
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Twilightzone, you've gotten some good responses on care. I'm going to focus on the finances.

If Mom hasn't any money, I suggest applying for Medicaid now. They do pay for some in-home care. For example, if Mom gets to need a lot of help with her shower they would cover a bath aide coming in a couple times a week. She may be entitled to some housekeeping help. I know you can do that, but as she needs more care it is good to free up some of your time. Probably not now, but down the road Mom may need a visiting nurse or a person care attendant. Medicaid will cover the co-pay on medicines, and on doctor visits. They may pay for Mom attending an Adult Day Health Program once or more a week. Apply now. Use whatever is needed in your home as it becomes necessary. And use it for paying for a facility if/when that time comes.

Here's how it went for my mom.
1) When she began to have problems in her senior apartment, we called Social Services for a needs assessment. They helped get her on Medicaid. She got a visiting nurse, a cleaning person who also did laundry, covered all her co-pays, and signed her up for meals on wheels.
2) When it became clear that Mom could not live alone, even with all that help, she moved in with my sister. Medicaid continued to provide benefits.
3) When the dementia and arthritis pain just could no longer be managed at home, we placed her in a very nice nursing home that accepted Medicaid.

All I'm saying is, if your mom might qualify, don't put off applying for Medicaid until/if she needs a care facility.
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FuneralGal, the gifts to family may be tax free, but that is NOT a way to spend down to qualify for Medicaid. Gifting is specifically disallowed. The reasoning goes that you should have used that money on your own care before asking for financial help.

Also, the OP states they have NO money -- doesn't sound like they are looking to give money away.
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At this point of the year, I the she can still gift from last year and this year...there is a "look" back period though.
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At this point of the year, I the she can still gift from last year and this year...
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First, it is legally allowed that you mother can gift up to $10,000 per year tax free to immediate family. This is a a smart way to do the spend down for Medicaid assistance. Talk to your local funeral home and they will help guide you. I used to work in this and they are a great resource.
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Do you have all the legal paperwork done like POA, living will, etc? If possible go to Eldercare attorney for this, shop around see if less fees. Maybe one for elderly that charges less fees (like taxes for elderly free, etc offered) would be able to help. It maybe too late for long term insurance, it was for us. Expensive too generally. Get as educated about homecare, Medicaid ability, etc. You can make better decisions if you are fully knowledgeable about things. Parents can be stubborn, try to work with her and convince for a shower, etc as the situations come. Be prepared for the unexpected, like falls, if she would turn the burners on (removed knobs) etc. My husband has frontal temporal dementia at age 61. God be with you. I am keeping him at home until the end I hope. This is the hardest thing I have had to do.
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Thank you all for your feedback.
Just was reading about TIA - that sounds like a possibility if it is transient like that.   Symptoms are more notable when she's tired. She was better today, and made chili. But she hasn't been "right" for a long time, and is often confused and exhausted when taken out of the home to go shopping and such. But the two incidents detailed above are new and different.

I agree that the insurance would cover some type of vitamin D test, but she just refuses. Said she asked the doc a few years ago, he said ins wouldn't pay, she takes vitamins, that's it, end of discussion according to her.  It turns into an unproductive argument and spitting contest.  It's frustrating because our conversations often go in circles.   I'll work on it because she needs the test. I may just bring it up when we are at the doc's whether she likes it or not - but I've had to walk the line with meddling as well.

I'll suggest to her getting these new symptoms investigated? I'm pretty confident it'll be met with a stubborn 'no,' but she was also concerned about why she forgot the bit about the washing machine. Still she's resistant to any kind of medical tests.

Clever suggestion to tell the elder they will lose their health insurance if they don't go. She's pretty up on these things so I probably coudln't get away with it - but eventually that may work on her. lol

i need to get on it and start learning what the resources are. Without money they are probably pretty scant. We probably could not afford long term care insurance either.
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I agree with others who suggest TIA or some sort of stroke activity. If her last brain imaging is available, get a neurologist to order a repeat imaging to stare and compare. Something has changed.
An injection of B12 monthly was quite common fifty years ago. I don't know why that protocol was dropped; it did help my grandmother.
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I can imagine your concern and frustration. I will share what I learned with my LO.

Since you don't have a diagnosis, it's difficult to say what you are dealing with.(I'd try to get her checked for UTI, and other issues as stated above.) But, as JesseBell said, if it's Vascular Dementia, it often has a stepped down progression. At least it did with my cousin. She went from running her own household to needing AL within a few months. The symptoms are not unlike your description of your mom. She forgot how to use the washer/dryer, tv remote, drive, etc. Her short term memory was non-existent. Her doctor said she needed Assisted Living and soon after entering, she progressed further, then went into Secure Memory Care, since she started to wander and became incontinent. Within 3 years, she is now in MC with profound dementia Severe/Late Stage. (Wheelchair bound.)
I never expected this to happen so quick.

I might go ahead and look around to see what resources there are available in your community. There is help that comes to you in the home and also facilities. I would trade the name "home" for facility, because there are all types of places and they all are not rest homes. I'd explore what is available in your community, should you need them and how the payments work. I'd look into Medicaid type programs that pay for AL or Memory Care much like Medicaid does for nursing home. Your mom may not require skilled nursing care, but, could require assistance with her daily activities. If you can consult with an Elder Care attorney who knows Medicaid, it would be helpful. I'd explore if her income qualifies her for these type of programs.

I would go online and view the Teepa Snow videos on You Tube regarding dementia, as they explain what you're dealing with and how to get through this journey. They are quite informative and supportive.

Sometimes, the demands of caring for a dementia patient in the home are not just the incontinence, immobility, or physical disability, but, other things that can tax your body and mind, such as constantly repeating things, constantly asking the same questions over and over, having delusions, hallucinations, sleep disorders, constant pacing, rummaging, wandering, resisting care, resisting medication, etc.

Caring for someone with challenging behavior alone in the home requires a lot of work and diligence. I'd learn where to go for help if that happens and you need it. This site is a great place to get information and support. I wish you all the best of luck.
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