New and trying to find our way.

LB1614

Hello! I am new here and so far have appreciated reading posts on this forum - thank you all for sharing so openly. This site is not somewhere I thought I'd be posting on in my early 30's...

My mother was recently diagnosed with Alzheimer's (aged 65). Her neuropsych work-up showed results as anywhere from far below average/significant impairment to borderline, depending on the testing / cognition area. Therefore, her doctor said he couldn't tell which stage she is in at this point in time. He did start her on exelon and told us to return in 6 months. He also ordered an OT driving evaluation. I'm wondering if others have had this experience? It is super difficult to plan with so much uncertainty and 6 months seems like such a long time!

So far, I am helping my mom with her weekly med planner, checking on her finances weekly, and scheduling/taking her to all of her medical appts. She currently lives alone, with a small dog. Her spirits are good and she speaks with a therapist weekly. Besides my extremely supportive husband, it is just me to help and support her..

Fortunately, I'm a social worker and several of my friends/colleagues work in aging/hospice. My mother resigned from her job, and I've linked her to Medicare, early retirement benefits, and I have a call into the local Area on Aging office. My parents divorced after 25 years of marriage, and unfortunately, my mom has very limited savings. I have her on waiting lists for subsidized housing complexes. From what research I've done it appears that folks with Alz aren't eligible for long-term living insurance. What resources are out there for long-term care for loved ones with Alz with limited savings? Are there any other resources I may be missing or should consider exploring? 

I appreciate this community! 

L

M1

Hi LB. It's a travesty, but the only way to pay for long term care is to qualify her for Medicaid. You should find a certified elder law attorney to help you plan for this, as it takes some time and is different in each state..  S/he can also help you set up powers of attorney too, which you will ultimately need. Welcome to the forum, and good luck.

towhee

You asked--Has anyone else had the experience where the doctor says- here's your diagnosis, here's your hat, see you in six months? Many of us unfortunately. Most of us have to get our information elsewhere.  As to what stage of the disease your mother is in, the doctor really might not know. He knows the test results, but not your mothers' baseline, what the test results would have been last year for your mother, so he doesn't know if she has declined a lot or just a little. He will depend on what testing he does in six months and especially on your report of her functional abilities. There are various scales that are used to measure what stage a person is in (google seven stages of alzheimers) but no one fits neatly into a box, everyone usually has characteristics of multiple stages. What you will need to determine in order to care for your mom are her functional abilities. Frequent advice is to spend a couple of days living with your mom (give non anxiety producing excuse) so that you can see her true level. 

The path of this disease is nothing but uncertainty. It can last 2 years or 15. It can be slow and than fast or fast and then slow or be a gradual decline. While you are still in the beginning stages you need as much information as you can tolerate and use that information to make a Plan A, B, and C. The most often recommended resources here are The 36 Hour Day and "Understanding the Dementia Experience" (the last is available free online).

The previous poster brought up POA. Getting a durable power of attorney and a health care power of attorney is vital. You need to try to do that before you approach the driving issue, as the driving issue can create bad feelings. When it comes to the driving let someone else be the bad guy and try to replace driving with other transportation access.

You asked about care resources. To try to stretch the time she can live independently, you can look into Meals on Wheels. This gives her nutrition everyday and someone to check on her. (Cooking is one of the most dangerous activities) Some churches have call groups where volunteers do check in calls every day to vulnerable seniors. You can use remote access cameras to check in on your mom. There are systems that monitor a pattern of physical movement and can let you know when something is out of the pattern. There are fall monitors and GPS trackers for wanderers. Senior Day Care is less expensive than AL and can extend the time family can help care. Some organizations offer respite care (very limited) to family caregivers. Your area might offer a Community Alternative Program (Medicaid) where aides would be provided to help your mom take a shower twice a week and do minor chores. There is sometimes also a program called PACE. If someone was in the armed services there could be VA benefits.

 When she reaches the level where she needs Memory Care, there isn't much but Medicaid in your situation, and what it covers differs from state to state. Some states cover Assisted Living/MC some only cover skilled care (Nursing homes). If you don't know, find out what your state covers. In states that don't cover Assisted Living family often either has to try to care for loved ones themselves or move them out of state until a doctor says they have reached the level where they need nursing home care. In qualifying for Medicaid, since your assets are low, they are not a problem. You will undoubtably spend them on her care. Whatever you do, do not transfer assets out of her name. If she needs care services within the 5 year lookback period, she might not get them. Income limits can be a bit more complicated, so you need to find out what those are. 

Welcome to the club no one wants to join. You have already accomplished a lot getting your mother diagnosed and getting her retirement and social security.  You have knowledge from your profession and good information sources in your friends.  A lot of this information you might have already known, but I hope something is helpful.

LB1614

Thank you, M1. We'll start working on obtaining an elder law attorney, that is great advice. Thanks again!

LB1614

This is all very helpful information, towhee, much appreciated! Thanks for taking so much time and energy to write this out and help point me in the right direction. I'm hoping that the driving eval (done by an occupational therapist) will end in her losing her license, so I don't have to be the bad guy. I have applications for our Medicare-funded shared ride service ready to go for when/if the times comes!

All of the options you gave for extending her time at home are helpful to consider - thank you! I like the camera option; I'm not sure about staying with her for a few days at a time, to be honest, but it's something I will consider. As probably many others on here, my mother struggles with alcoholism and mental illness, which re-triggers my own traumas by being raised in this environment. I try to do what I can while still taking care of myself and maintaining my own boundaries. It is quite the balance...

While this is the club no one wants to join, I am grateful to finally have some answers. 6+ months of testing/work-ups, wondering, getting frustrated, etc., in the middle of the pandemic, was quite unbearable. Wish it wasn't this, though there is some comfort in knowing. Thank you for your guidance!

zauberflote

LB, hopefully your mom will lose her license. Perhaps that will cut off access to alcoholic beverages. I know someone that happened to. Nobody bought any for her. But if your mom manages the ride-share thing, she might maintain access. It would be good for her to stop drinking for a(nother) reason you may not have heard of yet-- Wernicke-Korsakoff's dementia. There are experts on this around the forum who may drop by with support.

harshedbuzz

LB1614-

You've already gotten some excellent advice from the previous posters.

Caring for a parent who was always challenging is a special kind of suckitude. My own dad and I never really got along; I was never his favorite but did the work it took to be OK with that. Unfortunately, when his favorite (my sister) died, he layered alcoholism over his other mental health issues which resulted- eventually in a dual dementia diagnosis of Alzheimer's and Wernicke-Korsakoff's which is a particularly nasty dementia/amnesia that can result from alcohol abuse, eating disorders, certain end stage cancers. There seems to be a genetic predisposition to it- dad's nephew had it and died in his 50s, my sister likely had it the last year of her battle with AIDS. 

Did your mom see a neurologist as part of her diagnostic process? WKS comes with some pretty distinct symptoms related to temperature regulation, gait, vision and a tendency towards false memories aka confabulations. If she does have this, no alcohol should be the rule.

Dad was an active alcoholic at the time of his diagnosis; in the middle stages of the disease he could make the lives of those around him hell without his fix and yet he didn't have the mental capacity to recognize what he was doing to himself (short term memory shot as well as anosognosia) or the ability to learn strategies to overcome his addiction and implement them as needed. I did look into a special alcohol rehab for seniors, but given his dementia even they thought it would be a waste of time. We didn't have any good options- either place him in a facility where he couldn't get alcohol making him miserable and spending down monies my mom would likely need for her own care or attempt to restrict it to a minimum because he was aggressive and abusive without. 

A few people here suggested non-alcohol wine. Everytime it was offered I thought it's cute you think that because dad's brain was damaged, not his palate. Perhaps not people who have lived with an alcoholic. Still, I did try. I even tried cutting it which wasn't accepted either. Given my dad's dual diagnosis, there was no happy ending to be had. His drinking probably hastened the progression of his disease, but his quality of life and that of my mother were such that it became about keeping things as calm as I could. 

One thing that helped was getting dad to a geriatric psychiatrist for medication management. He put dad on a lowish dose of an antipsychotic which seemed to calm down the aggression. He also put dad on Wellbutrin to try to activate him a bit. That failed miserably, but the Wellbutrin seemed to lessen his desire for alcohol considerably which helped a lot. This medication is indicated for smoking cessation and binge eating, so it kind of makes sense it might help some with drinking.

Dad's psychiatrist suggested the special OT driving evaluation. I put it on dad to make the arrangements, and he wasn't able which to me meant he shouldn't drive. These evals are not covered by insurance and run about $500. Another downside is that she could pass this month and be unfit to drive next month. Or she could drink and drive. In your shoes, I would disappear the car. Perhaps it could be "recalled" and "wait for a part back-ordered from China". 

Given the diagnosis, a standard Section 8 senior living apartment is not likely a good fit for long. It's just inexpensive housing. TBH, she's probably even past a situation where a hospitality model AL will be enough supervision and support for her. My aunt was placed in AL because her daughter had been scaffolding for her so successfully she seemed less impaired than she was. She lasted less than a month before it all went horribly sideways. 

Talk to a CELA about Medicaid planning and whether it will pay for MCF in your state. Mine does not. When we looked at MC for dad, I did consider moving him across state lines to a state that does. 

Good luck with this.

HB