Questions for newly diagnosed mom

Jackie_K

Hi everyone - my mom was diagnosed last week and the doctor said she is in the early stages. One of the recommendations that the doctor had was to set up some help for her at home - her executive functioning is still intact but her short term memory is so poor that it's hard to trust her with basic things.

She doesn't need help with anything like dressing or bathing at this point, but she is forgetting to take her medication and we believe she is forgetting to eat sometimes. There have been some other things that have alarmed me too when I am there to visit with her (random things in her stove, that sort of thing). Has anyone set up anything like this yet, and do you have any suggestions? The doctor said insurance doesn't cover this - if anyone is comfortable sharing a ballpark for cost I would also greatly appreciate it!

On a less tactical note, does anyone have any suggestions for things that they did for their parent upon receiving this diagnosis? My brother suggested having us all write her a letter, which we will all do. Would love any other suggestions. I am doing my best to work through the all the things that need to be done, but I'm also feeling a lot of grief right now.

M1

Welcome to the forum Jackie, though I am sorry you are facing this. It sounds like she has been living alone? One of the really hard questions is whether it is still safe for her to do so. If she is forgetting to take medications and forgetting to eat if not prompted, help at home may mean 24/7 care, which is pretty expensive (25-30 dollars an hour typically). If there are random items in her stove, what would happen if she turned it on? Is she susceptible to scammers? Is she driving? Life may need to change faster or more drastically than you want to believe.

If you do not already have power of attorney for her, you should consult a certified elder law attorney sooner rather than later to get her legal and financial affairs in order. They can help you assess finances as well, as planning ahead for Medicaid applications is many times needed.

I am less certain about things to do for her from the family. The diagnosis may have more impact for you than it does for hef, she may well forget what she's been told or have anosognosia (more than denial, she really thinks she's fine).

You've come to a good place for support and advice. Im sure others will chime in.

mommyandme (m&m)

My mother lived alone and out of state from both my brother and I. We started with a home care service and contracted for 6 hours a day with two three hour split shifts. At that point she just needed oversight and assistance. The morning would cover meds, breakfast and lunch left in the fridge, errands, assist with dressing, any appts and, of course, companionship. Afternoon/evening shift would cover dinner, meds, getting ready for bed etc. She was alone middle of the day and all night. That worked well for quite a bit, then we increased to two four hour shifts until 24/7 was necessary. Finally we moved her next door to me and I became her primary caregiver. Cameras installed were incredibly helpful as she continued to decline. I agree that $25-$30/hr for a service is a reasonable expectation. If you found someone from a source like Care.com the cost might be a bit lower but it’s up to you to do the vetting and there could be tax implications you’d need to take care of. We had success with Care.com too.

Welcome to the forum yet I’m sorry for your reason.

jfkoc

24/7 care is warranted at this point. I know that is not what you want to hear but start looking for it so that you are ready when the "other shoe frops" and it will.

Along with looking for in home care I would start finding a facility and please consider one near you.

Now is the time to get all financial and legal matters tended to!!!!!

Letters from family? Content??? Please not her illness.

NOTE; all options are expensive unless she has a Long Term Health Policy.

Jackie_K

Thank you so much, everyone. This is really helpful advice as we start to explore getting some in home care set up for her.

We met with her PCP today and per her doctor, she can no longer drive but does not need 24/7 care at this point. What @mommyandme (m&m) described sounds about what my mom needs to start. I am in parallel starting to explore longer term options as I know that will happen at some point.

My mom was a lot less upset about the driving than I thought she would be. I think it is more stressful for her than she lets on, but so many things have resulted in her being really angry so I was pleasantly surprised that it was not a big fight. Her car is currently not working (and we have intentionally avoided taking her to go fix it), so that has been fortunate timing for us.

On the letters, of course we would not write her letters about her illness. It would be family memories and telling her how much we care about her.

Thanks again to everyone for the advice.

harshedbuzz

Hi and welcome. I am sorry for your need to be here but glad you found this place.

Neither you nor her doctor have any idea how safe she is at home right now unless one of you has spent several days 24/7 observing her at close range. In your shoes, I would make an excuse to have a 4 day sleepover and make notes. Is she able to safely use a stove? Are the contents of her fridge and pantry safe to eat? Is she getting a lot of scam calls or weird "charity" solicitations in the mail? Does she still have access to internet via a laptop, smartphone or tablet? Check out the contents of her email. Is she actually showering and changing clothing daily?

If no one has her DPOA and Medical Directive, you'll need to get that done asap.

If she's not compliant with medication, either a family member or aide will need to take that over. If family is close and visiting most days, you might be OK for a time having an aide come in for a few hours each day. Where I live, these were $30/hour 5 years ago via an agency. It's less off care.com or via word-of-mouth sometimes, but then you have to deal with insurance and taxes and covering when they don't show up.

HB

blatthitham

Hi there, my father has ALZ and also has a hard time remembering to take medications. Check out the Hero machine. It’s amazing and has an app so you as caregiver can keep track.

I believe some insurances will accept it as well.

Hope this helps!

MN Chickadee

You've received good advice. Being my mother's caregiver and POA was both an honor and the hardest thing I have ever done. I would second finding a fake excuse to spend a few days at her house to see where she is really at and what goes on 24/7 so you know what kind of care you need to hire. I would absolutely tour memory care facilities near you and get on some wait lists as well. Having a plan B and plan C are immensely important. Things can change suddenly with dementia. And I would meet with an elder law attorney for financial planning. They can help make a plan based on her finances to pay for care. Once people spend down their money they may qualify for Medicaid for long term care but there are strict rules that vary by state and you want legal advice on timing and sheltering any assets you can. Hiring help in the home is usually the most expensive way to go, unless family can cover a large share of the day and only hire one shift of help or respite care. There is some variability by geographical area but ballpark - hiring 24/7 care in the home would run you $15,000 or more per month. A memory care facility would be more like $8-10 thousand per month. So people fly through savings and assets pretty quickly and having that long term financial planning is really important. As for what to do for her, just spend time together. Reminisce, look at old photos, talk and laugh and touch. Writing a letter may be therapeutic for you as her child but if you give it to her I would keep it very positive and nothing that will cause anxiety about her future. There is definitely plenty of grief in this journey. It's constant and unrelenting. My mother lived with Alz for 15 or more years and died a little over a year ago. The grief changes but is always there, even now.