Struggling as a caregiver mom with dementia

Fleabug821

I’ve been my mom’s person going on 6 years now. She started out being diagnosed with cardiac heart failure and now stage III kidney failure but the dementia seems to be the hardest. She lives alone just a few blocks from my house but I work everyday so I can’t keep an eye on her constantly. I do have a nanny camera set up. She’s been wondering to neighbors lately and thinks people are in her house she tells them. I know she needs more help than I can provided. After her last hospital visit in February she went to rehab at a skillled nursing home but once sent home she
denied home heath,I tried to get her to go to assisted living, denied it. Now she’s back as she was before. She can’t take care of her daily ADL’s, not taking her meds correctly causing fluid build up in her legs, leaving dirty clothes all over the house where she’s had accidents, paper panties, food containers, trash. She gets upset with me for cleaning and making her bath. I’m just at my wits in and I have no idea where to turn. She makes to much to qualify for Medicaid and I’m not sure if she can go into assisted living now with the condition she’s in? It’s just so much and so overwhelming. I’m loosing my mind and my health is suffering. I want the best for my mom but I have kids, a grandson, husband, dog and job. I’m 😕😥 sad, confused, angry, depressed, dead inside!!

M1

You need to talk to a certified elder care attorney about obtaining power of attorney for her or suing for guardianship if she won't agree. There are ways to qualify for long-term Medicaid that differ from those for health insurance, the attorney can assist with that also.

mommyandme (m&m)

ttt

MP8

Hi Fleabug821. So sorry to hear what you are going through.

You might try the Alzheimer's Association Helpline. It's free, always available, and you can speak with a social worker who is knowledgeable about Alzheimer's and other dementias. I've called several times when I was at wit's end and they have been helpful.

Also, does she have a regular physician? If so, does that person know what's happening? It would be worth reaching out there, too.

I know it's hard but take care of yourself. Finding even a sliver of time to enjoy something - your grandson? your dog? a bath? - can help. Even if it's just for a minute or five or ten.

Phoenix1966

You’ve been given some very good advice. Get to a CELA first to get your legal and medical ducks in a row for her. I doubt your mother would be accepted at an AL location. That is for people who perhaps need a little reminder now and again, but are mostly capable of handling their ADLs. Your mother sounds like she needs to be in a Memory Care facility.

You should also probably start to scout out some potential MC facilities now. Often, there is a wait list for them and it sounds like your mom should be on that list.

Fleabug821

https://alzconnected.org/discussion/comment/187112#Comment_187112

We actually had a doctors appointment today because of her wondering to the neighbors last week telling them someone broke in her house and cooked. She proceeded to tell the doctor all about it and he’s referring her to a neurologist. Maybe that’s a start. I’m also trying to find an elder attorney. I’ll probably call the Alzheimer’s hotline too. Thank you for sharing.

Fleabug821

https://alzconnected.org/discussion/comment/187019#Comment_187019

I have dual power of attorney and medical POA. I do need to see a lawyer though to make sure I’m handling things correctly. I don’t want to penalize her if she needed Medicaid to step in.

Fleabug821

So can a memory care facility handle all stages of dementia? I’d much rather put her in a assisted living with memory care verses a nursing home.

I'm just unsure exactly what she needs.

Fleabug821

https://alzconnected.org/discussion/comment/187120#Comment_187120

So is a memory care facility like a nursing home that has a memory care wing? When she got out of rehab back in March I had toured a few aside living facilities that had memory care but I wasn’t quite sure about what they do once a person gets to where they are not able to do anything for themselves. I don’t want to move her around. If she goes somewhere I’d like it to be a permanent place and they can handle what is a to come as this all progresses. Also what is a CELA?

harshedbuzz

@Fleabug821 said:

"So can a memory care facility handle all stages of dementia? I’d much rather put her in a assisted living with memory care verses a nursing home."

Assisted Living for Memory Care is basically the same thing as MC. It's just a more discrete nomenclature for some. A good one can offer aging-in-place which means your LO can live out their life in the facility. That said, there is an expectation than you would provide additional staffing once her care needs reach a certain level-- non-ambulatory, needing feeding assistance, etc. Sometimes bringing in hospice will satisfy the MCF, sometimes not.

A traditional AL is not a good fit for anyone but those in the earliest stages of dementia who don't have behavioral issues. My cousin put her mom in AL in the mid-stages and it went very badly. The facility was not secure, residents were not escorted to meals and the other residents excluded her once it became obvious to them that my aunt had had a cognitive shift.

"So is a memory care facility like a nursing home that has a memory care wing? When she got out of rehab back in March I had toured a few aside living facilities that had memory care but I wasn’t quite sure about what they do once a person gets to where they are not able to do anything for themselves. I don’t want to move her around. If she goes somewhere I’d like it to be a permanent place and they can handle what is a to come as this all progresses."

I can appreciate not wanting to move her. There are a lot of models for MC. My auntie's was part of a large CCRC in a building shared with traditional AL. My dad's MCF was a free-standing MCF that's all they did. One advantage was that the staff were there by choice and were well trained and experienced. Auntie's place was very high-end and well run, but sometimes floaters would come into the unit who weren't trained in dementia care. Given you mom's health issues, a campus with a SNF might make sense. If either the heart or kidney issues progress she may need skilled nursing. Dad's MCF didn't have RNs in the building; the DON was an LPN.

Also what is a CELA?

Certified Elder Law Attorney. These are the experts in Medicaid planning.

MP8

https://alzconnected.org/discussion/comment/187134#Comment_187134

Hang in there! I've had times when I was convinced I could not make it another day - even another hour - without screaming, running away, etc. These crazy periods are interspersed with times when life feels almost like it used to, although it seems these times are getting shorter. Learning to surf . . . .

housefinch

Maybe an honest discussion with your mom’s PCP would be helpful, too, about her medical issues? I am wondering if those will shorten her life faster than the dementia does. @M1 can address this better than I can. Also, maybe evaluating her medications, overall medical treatments, etc, in light of her dementia, and considering a palliative care appointment for some perspective & advance planning before a crisis hits would be worthwhile. I’m a physician but not for adults.

M1

If you hold power of attorney, then you make the living arrangements without discussion and just take her, period. There's a saying on these boards that safety drives the decision-making; she doesn't get a say, even though you are used to deferring to your parent. Your main issue may be cost of care, and yes, the attorney can help you qualify her for Medicaid. She may not need skilled nursing if she gets proper diet and medication administration. But it does sound like she needs memory care, not assisted living, and finding a facility that accepts Medicaid may be your biggest challenge.

Fleabug821

https://alzconnected.org/discussion/comment/187153#Comment_187153

Thank you for sharing your story and all the information. Definitely helpful. I’ve felt so lost. I wished I had found this site along time ago. ❤️

So can a memory care facility ha

VKB

https://alzconnected.org/discussion/comment/187019#Comment_187019

I agree.

Fleabug821

https://alzconnected.org/discussion/comment/187195#Comment_187195

I screamed to the top of my lungs in my garage before heading to work this morning. Didn’t do any good except hurt my throat! 😫 ugh

So can a memory care facility handle all stages of dementia

harshedbuzz

@Fleabug821

You said: "So can a memory care facility handle all stages of dementia"

The answer is more nuanced than that.

It is typical for MCFs to operate under a business model that balances the care needs of their resident pool by restricting new admissions to those who are early stage 6 or earlier and can still ambulate (some will allow a long-time wheelchair user who can get around independently) and self-feed to avoid having an entire population who needs assistance with everything. If you miss that window, a MCF will not be an option for your LO. I often remind people weighing the timing of placement that they're a broken hip away from losing that choice and having to place in a SNF at a much higher cost and likely without dementia-informed programming.

Dad's MCF admitted their facility limited the number of residents with FTD-behavior variant to one per hallway because of their higher need for staff engagement meant other residents might not get the attention they needed. Other facilities cherry-pick their residents for the pleasantly befuddled only and don't accept everyone who applies. My dad was turned down by one facility based on his alcohol-related dementia which has a reputation for difficult behaviors.

I was very open about dad's mixed dementia when I toured the dozen or so facilities in putting my Plan B together. None of them said outright that they wouldn't accept dad prior to interviewing him, but I suspect the cherry-pickers would have shown him the door after cashing the community entrance fee and first month's rent. It's always prudent to ask under which circumstances would a resident be asked to leave. The only place I visited where they not only took all comers but didn't flinch at a challenge was the state veterans' home which was an amazing place if you qualify and survive the waitlist.

As I mentioned in an earlier post, most MCFs will expect family to bring in additional aides when care needs increase. It's a good idea to ask what triggers that request. Sometimes hospice will satisfy this request.

My aunt was in MC for about 4 years before her guardian started to make sure my aunt had someone at lunch to make sure she ate; she had had a stroke which impacted one side and also had essential tremor which meant it took her much longer to eat and she often needed help with packaging. If guardian or other family couldn't be there, then the guardian hired someone to come in. Over time, aides were added to help with hygiene like toothbrushing which is typically verbally prompted or performed hand-over-hand when time allows. When the cost of aides on top of MC fees approached a SNF fee, the guardian moved her to get the higher level of care. The CCRC was very flexible and allowed my aunt to spend most of her day in the MC side with staff and residents she knew having meals and doing activities.

HB

SDianeL

https://alzconnected.org/discussion/comment/187308#Comment_187308

short answer yes. But find one that handles her specific medical issues as well. Speak to them. Someone posted on this forum questions you would ask the MC facility.

Fleabug821

Thank you everyone for their stories, advice and suggestions. I’m so happy I googled and found this site ☺️spoke to a elder attorney today and got the form for her physician to fill out for guardianship. Now onto looking for the right facility for her. She’s not going to be happy about any of this but it’s for her own good and health.