Resources for someone in early stages of dementia

[DawnM]

I am asking for a friend, so really just need ideas to tell her, I can't actually make any of the decisions in this case.

 

73 year old woman.  Single.  Diagnosed with Dementia.  Two children, both married, both with youngish families.  

 

Very little savings or retirement, gets a small amount of $1500/mo or so to live on.  Still paying mortgage, small amount, but not sure how much.

 

She really cannot live on her own anymore.  

Her drivers license has been taken away.  

She is becoming belligerent and well, mean.  (even meals on wheels has now refused to deliver to her)

She is refusing to leave the house, sell the house, etc.....

She is still lucid, but becoming more and more forgetful and angry every month.

 

They are working on a power of attorney, but it is hard and she is so resistant.  

 

She doesn't have enough for a nursing home and the low income nursing facilities are on a 1-2 year wait list and require her to share a bedroom and they are saying they won't take Alzheimer patients.  Places that will take Alzheimer patients are not for low income.

 

No idea how to advise or even make suggestions, but they have asked me so I thought I would ask here.

 

They are in Michigan if it matters.

 

 

 

[MomtoCandJ]

Not sure how the Medicare/Medicaid thing works (all I know is with limited income both will pay but the person must also have limited assets). That's how we got my great grandma into a nursing home. If you don't mind me asking, what part of Michigan? Northern Michigan (where I'm located, not the upper peninsula though) has lots of nursing homes and many take Alzheimer's patients (and where I'm at the income isn't high).

[JFSinIL]

I'd see if a social worker at the local social services offices or nursing home would talk to you about resources and what to do. 

[Amy in NH]

I was just reading about dementia, vitamin B12, and acid blockers. Do you know if she takes acid blockers or a B vitamin?

[DawnM]

I was just reading about dementia, vitamin B12, and acid blockers. Do you know if she takes acid blockers or a B vitamin?

 

 

No, and she wouldn't unless monitored and even then might be belligerent about taking it.  She is already not taking other medications she needs to and gets angry when given them.

[DawnM]

Not sure how the Medicare/Medicaid thing works (all I know is with limited income both will pay but the person must also have limited assets). That's how we got my great grandma into a nursing home. If you don't mind me asking, what part of Michigan? Northern Michigan (where I'm located, not the upper peninsula though) has lots of nursing homes and many take Alzheimer's patients (and where I'm at the income isn't high).

 

 

Detroit area.

 

They have been working with a social worker but there are issues with that too.....I can't remember what they were, the social worker says she is not bad enough yet to file a case, but she isn't well enough to function on her own.

 

I don't know where they are on the attorney thing.

[*lifeoftheparty*]

..

Edited December 18, 2016 by *lifeoftheparty*

[prairiewindmomma]

http://www.alz.org/gmc/in_my_community_helping.asp

 

Here are some local resources.  I would check with them for additional support and help.

 

The aggression and paranoia are very common with Alzheimers.  We had to medicate family members in order to prevent physical violence. Their first priority should be getting the power of attorney, but the second should be trying to find a good psychiatric nurse practitioner focusing on Alzheimer's/dementia.

[StephanieZ]

So scary and sad! I don't have a lot of detailed info, but I would encourage her children (presumably your friend is one of them) to immediately proceed with getting guardianship if they can't execute the needed POAs. She is in grave danger as is. If funds for a guardianship process aren't available, then I'd contact Adult Protective Services as well as the local chapter of the Alzheimer's Association and the mom's personal doctor . . . and ask/beg all for assistance. 

 

If it were me in those shoes, I'd expect to need 5-15k to get going with an attorney. If the kids can't afford that, then they are in deep trouble with few resources.

 

The mom will eventually need a NH that accepts Medicaid and accepts ALZ patients. I'd look into options near the children, in particular whichever child is more likely to step up and take care of Mom. Alternatively, Mom could live with one of her kids, but that would be a heavy burden given the situations.

 

Just hope there is more $$ somewhere . . .

 

 

[Guest]

ALL anti-psychotic medications are Black Box warned and contradicted for use in dementia.

 

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm124830.htm

 

My best friend blogs about her experiences with early onset Alzheimer's. She is 47, but your friend is going through the same experience even if she has lost the words for it and does not have my friend's background as a writer and public speaker.

 

This is her resource page:

 

https://stilllifewithdementia.wordpress.com/2015/10/10/suggested-reading/

 

I would advise you to help your friend get connected with Dementia Alliance International ASAP:

 

http://www.dementiaallianceinternational.org/

 

and to avoid alz.org:

 

https://stilllifewithdementia.wordpress.com/2016/02/06/the-alzheimers-association-usa-does-no-help-people-with-alzheimers-or-dementia/

 

Kate Swaffer has a list of 20 things not to say or do to a person with dementia here:

 

http://kateswaffer.com/2014/06/05/20-things-not-to-say-or-do-to-a-person-with-dementia/

 

and Christine Bryden's book is also worth reading:

 

http://www.amazon.com/Christine-Bryden-Dancing-Dementia-Positively/dp/B008UB770C/ref=sr_1_2?ie=UTF8&qid=1448155457&sr=8-2&keywords=dancing+with+dementia+by+christine+bryden

 

HTH

Edited February 17, 2016 by Guest

[prairiewindmomma]

IEF--your resources are aimed at the person living with dementia, which is lovely.  I'm glad that those resources are there.

 

My loved one can no longer read a menu at a restaurant, let alone write...and has become physically abusive to caregivers when her anxiety is too high.  As her condition progresses, she is losing the ability to do any type of self-care (toilet, bathe, etc.)  She is well beyond being able to advocate for herself, and in fact is very very angry that we no longer allow her to drive or stay in her own home even though she cannot remember who she is or where she is from moment to moment.  She acts on that fear and anger by beating the heck out of whomever is around her, unless she has her anti anxiety medication. Pharmaceuticals have a time and place---and are an appropriate part of effective dementia care.  They certainly shouldn't be the only solution--providing a soothing environment, appropriate activities, and redirecting are certainly important too.  But I find your advice to be a limited viewpoint based on a limited experience.  Don't shut other people's voices down.

 

 

[Laurie4b]

 

 

and to avoid alz.org:

 

https://stilllifewithdementia.wordpress.com/2016/02/06/the-alzheimers-association-usa-does-no-help-people-with-alzheimers-or-dementia/

 

 

 

 

I think blanket advice to avoid Alz.org is misguided. It may not work as a forum for people with the disease, but it is an excellent source of information. 

 

And if OPs friend is already in the belligerent stage and not taking meds, it's unlikely she would avail herself of forums anyway. 

[sparrow]

We had the "fortune" of having my mother, with Lewy Body Dementia, fall and break her hip :( . This set up a required stay in a skilled nursing facility which became permanent for the last year of her life.

 

By far, the most important thing we did was contact a law office that specialized in elder law. I happen to be in Michigan and can wholeheartedly recommend this firm: http://mielderlaw.com/

[sparrow]

Oh, and this is a great book, even if it's just so they can nod along and say, "Oh, gosh, yes, we deal with this, too": The 36-Hour Day

 

Best wishes to your friends. This is not easy.

[Storygirl]

We live in a different state, but I can tell you how things worked for my mom. My parents are middle class but with a small amount of savings. My mom worked for a number of years (but not enough to get full retirement benefits) in the public school system, so she had some money in a retirement account. They could not afford to put her in the Alzheimer's care facility, as nice as it seemed to be, because they only admitted private pay patients. Dad visited many of the nursing homes in the area to see what they were like and talk over the options. After he found one he thought suitable, we admitted mom (who had been living with me for almost a year at that point).

 

They had to pay the full amount out of pocket until they had depleted Mom's retirement accounts. At that point, she was approved for Medicaid, and now her nursing home bill that they have to pay is equivalent to her monthly pension check. Dad has no significant savings of his own (he was always self-employed and did not do a good job of saving for retirement but just spent money as he earned it), and about ten years ago they sold their home and became renters. After almost fifty years of home ownership, they had no equity in their home but actually had to pay to get out of their mortgage. So they really have no assets other than my dad's income and my mom's retirement accounts.

 

My understanding for how it worked in our area for someone who owned a home -- the nursing home could not require someone to sell their home, but they would consider it a financial asset, and the financial package would reflect that. Most people would need to sell their home and use the proceeds to pay their nursing home costs. Once all of those proceeds had been depleted, then they could qualify for government assistance.

 

Although it might not seem fair, the individual is expected to use their own assets, whatever they may be, to pay for their own care, before Medicaid will kick in.

 

All that to say, I suspect your friend will need to sell her house in order to fund her admittance into a nursing home. Once that money runs out, she may then qualify for more help. It's a tricky situation for them, since she evidently does not want to sell. Perhaps she will need to move in with a family member temporarily while her house is on the market, since she won't be in a position to keep things in shape for showings.

 

While they work that out, if I were the family I'd go ahead and put her on the waiting list for one of the low-income nursing homes, if she would qualify to be on their waiting list. In case it takes a year to get her out of the home (not ideal, but what if?), at least they will have a back-up plan.

 

It's all so very much harder when the family member who needs help is reluctant. My mom had Alzheimer's for many years before she got to the point of entering a nursing home, and my dad was able to make some advance preparations with POA, etc. But it was still difficult on many levels.

[Pen]

I know someone in another state with a bit similar type of situation. The older person initially went into an assisted living facility that accepted their monthly social security as payment less around 100 for personal use. However, the older person is now past the assisted living stage and needs a more skilled nursing home, not only for mental reasons, but also physical ones.

 

Interestingly though when (I think after a fall) the older person got into some decent hospital care, particularly with good food on a regular basis, many of the symptoms got much better as if a significant part of the problem was that in losing ability to care for self and eat good food, that itself was creating some of the apparent "dementia." If the person you know's mom can't get food for herself well, and esp. if meals on wheels (which may not be the best of nutrition in the first place) won't even come, that could be a part of the problem there too, and leading to a downward spiral.

 

And I too would suggest getting her on waiting lists for nursing homes.

[Pen]

How is the person's mom getting things like food at this point, btw, if she won't go out, and Meals on Wheels is not going to her?

 

Also, btw, the person I referred to in post above has still not sold house. Other possibilities, like perhaps turning it over to an agency that can rent it out and have the rent be added to social security to help pay for a NH are under consideration.

[SebastianCat]

We have dealt with similar issues with DH's dad, who has dementia as a result of a stroke years ago.   Getting POA immediately (or guardianship, if she isn't lucid enough to comply, or doesn't fully understand) should be first priority.   A good eldercare attorney and a good primary doctor are worth their weight in gold.   We live in FL, and FIL is currently living in GA, and we have had several consultations with eldercare attorneys.   A consultation will run the family $250-400 here.

 

Medicaid will cover skilled nursing care, which is not the same as assisted living or memory care.   DH's dad is transitioning from assisted living to an intermediate program (called "bridges" where he is) because he doesn't need full memory care yet, and isn't eligible for skilled nursing care.    Some assisted living facilities will accept Medicaid, but most do not.   A dementia patient who is no longer safe living on their own can move up to the "front of the line" for Medicaid eligibility, but there are some hoops to jump through and procedures to follow.   An eldercare attorney should be able to help guide those decisions for the family.