Hello friends, new around here!

brianhanna

Wanted to say hello and wish you well. My brother, sister, and I are looking for some help with Mom's Alzheimer's diagnosis. This is all new to us.

So far, we have her at her home. She had some incidents with local police, fire department, and neighbors and we realized she wasn't safe at home any more. My brother's boy took her in for a few months but that didn't last. She wanted to know why she'd been kidnapped, God love her. My brother has now moved from California to Indiana to take care of her full time. She seems happiest at home with her things around her.

She's at the "Who is that man who is staying here and taking care of me? And what is your name?" stage. She can't write the number "2". She can't manage any of the instrumental activities of daily living, like paying her bills or managing a prescription. But she can go to the bathroom, wash and dress herself and feed herself, the basic activities of daily living, so I guess she won't qualify for Medicaid. She doesn't seem to require a Nursing Facility Level of Care.

My sister and I are both 10 hours away by car, so my brother is doing full time caregiver. We're looking into options to get him some time off. A local retirement community has an adult day care program and a 7-day respite stay option that look good. I'd like to get Mom used to the place before an extended stay, so the adult day care looks like a good option.

I've been contacting ARC of Indiana, a navigator program, and getting some advice from them. I've been reading and learning about Indiana's programs, making phone calls, and trying to plan ahead. Working on contact lists, dated records of contacts, progress, and so on.

We see our long term plan like this. This is a movie, and my brother is the producer. (He worked in the movie industry, you see.) Mom is the diva actress, somewhat uncooperative. Act 1: she gets worse and can't take care of herself any more; Act 2: she's at home with my brother; Act 3: she goes to a facility. We want a nice long Act 2. My sister and I are trying to get the crews together, because obviously my brother can't do everything himself.

I'm just starting to look for support groups and found your community. I'll check out some smaller group video meetings too.

I love what I'm reading here about distracting, entering their world, etc. She's about 3 years old right now, from what I can tell. She's having a hard time finding nouns. When she was frustrated trying to say something, I said to her, "Your words have run away" and she clapped her hands and smiled. "Yes, yes! That's it!"

Any good hints about what else to do would be great. 

Blessings to you and your loved ones, Brian

Wilted Daughter

Welcome

The research you have performed is good for outlining resources. I typically start research at national level (federal), regional level (state), then local level (city/town). Where there is more funding you should find more resources (i.e. federal vs state vs local). 

The National Institute on Aging (NIA), National Institutes of Health (NIH), US Department of Health & Human Services have numerous resources/publications (most publications are free).

State websites can connect you to specific state/local resources. 

Additionally insurance providers (Medicare, Medicaid, Private insurance) have information on plans, coverage, etc. (resources).

There may be support groups in your area/online offered through elder services, ALZ Assoc., Trualta.com, local churches. etc.

I hope you have a good experience here and find/learn what you need to navigate through your journey. Best wishes!

M1

Welcome Brian.  If you haven't found it, look at Tam Cummings' stages of dementia.  From what you're describing, she's at least stage 5 and possibly early 6 (out of 7).

I would suggest you not "guess" about whether she'll qualify for Medicaid; this is worth talking to a certified elder law attorney about (look up at nelf.org).  Medicaid for long-term care is different than Medicaid for the uninsured.  These CELA's can help you be sure all your legal ducks are in a row (POA for finances and for healthcare, living will, regular will, etc) and handle her finances properly so that she can qualify if needed (varies by state).  These are necessary early steps for all of us.

Good luck, read a lot of threads, there is tons of good advice here.

Tfreedz

Welcome Brian! 

I loved the clever movie scenario you layed out and your positive attitude. It is very good of you to do all of the legwork and research while your brother is doing the hands on caregiving, both are extremely important. Since you mentioned wanting act two to last as long as possible, it is essential to get your brother some relief ASAP. Whether it is a caregiver/companion that comes in a couple hours a few times a week or the adult day care it needs to get started right away. Caregiving even the easiest person is all consuming and draining, you don’t want your brother to burn out, so help him get relief even if he doesn’t realize he needs it yet. Care.com is helpful as well as local agencies in her area.

As others have mentioned, read and explore this forum and suggest it to your siblings. It has provided me with a ton of information and support. 

You all sound like a loving, supportive family, your mom is blessed to have you!

brianhanna

Tam Cummings stages of dementia - thank you for the pointer there! I think you are right, she is between stages 5 and 6. I'm estimating a mental age of about 3. And this is for a woman with a doctorate.

She's having trouble recognizing family but not incontinent yet. Sometimes inappropriately dressed, but mostly can do that OK. Some catastrophic reactions but not resistant to caregiving yet. She is sleeping longer though, like 12 hours a day.

And thank you for the pointers about Medicaid. I won't guess and will have her evaluated. My ARC person indicated Indiana has a pretty high ADL bar for Medicaid waivers, so I'm less hopeful, but I will try. I'll check out nelf. We have POA but need to get that transferred to my brother. And thankfully we have some good-hearted accountants local (distant relatives) that have been watching out for her finances. 

I appreciate the suggestions, thank you!

brianhanna

For sure I want to get my brother some relief. I could tell just how exhausting the 24 hour vigil has been, and what a toll it is taking on him. A friend of mine in another support group ended up being the primary caregiver for his wife with Parkinson's and I remember some of his stories, so I've got a glimmer of the effort required.

The nearby retirement home has a fully set up memory care unit, and adult day care for drop off. It is literally like a block and a half away from her house. I am thinking if we can start getting her used to the place a little, it might make an eventual full-time transition easier, but with her condition, she may just never become familiar with any new surrounding.

At any rate, government aid or not, we'll have to make respite possible. A friend with Lewy Body disorder caregiving experience said to consider my brother in just as much need of support as my mom, and I believe that.

Thanks for the response, and best wishes. Brian

Tfreedz

Yes at this point your brother needs immediate support. If the adult care place can’t be done within the next two weeks please consider a few hours of care several days a week. You should definitely pay out of pocket with her funds until you can see if she qualifies for any funding. I worry that if you wait on that, your brother will be in burn out mode. We were fortunate to find a college student, friend of a neighbor and it has been a lifesaver! You don’t even realize how badly you need a mental break until you get it. The facility near by sounds ideal, I hope it all works out well for your family. Keep us posted!

Emily 123

Hi Brian,

What a team!

I agree--if your mom's at the point that she's not recognizing her sons as adults, she's not likely to retain any memory of the daycare visits to help ease her in. It might be better to do just a few daycare visits to see how amenable she's going to be to the environment, but really move ahead with the respite soon. 

 Now that family's had a chance to really see the amount of care she requires, it might be reasonable to review if a long second act with your brother as caregiver is still tenable.  (It sounds as if she might be wandering?)  Caregiving has a way of taking over your life 24/7.  People will try to do it until they are beyond exhausted, but there needs to be a balance between the needs of the PWD and those of the caregivers.  

Best wishes,