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I’m new and looking for advice on my mon who has dementia
Kathy Joh
Posted: Saturday, December 7, 2019 10:01 PM
Joined: 12/7/2019
Posts: 4


Hi.

I am new here and as I read through here it seems the challenges I have are minimal but here we go. 

Mom is 94 and living in a retirement community. She has mid- mid/late-stage dementia. She is a phenomena in that she’s still on a regular schedule, can remember to get up to use the bathroom at night, can sometimes remember to dress herself etc. She has also has a strong and healthy appetite and outside of the dementia is physically in good shape.

Mom lives with my brother who is autistic. He is functional and is now retired and they live together at the facility. A very co-dependent relationship, some good some bad.

My question is moms dementia in the past 6 months has gotten worse. She is hard of hearing and frequently removes her hearing aids, so we know she’s not hearing well. Her verbal skills have decreased and she talks very little.  When she does talk are the times she gets angry and agitated. 

We also have caregivers coming in daily for 4 hours to get her out of the apartment and mixing with the other residents - -well as best as she can - weekly visits to the beauty shop there, lunch.  She also has caregivers who come in the morning to help her showing, dress, take her med, and in the evening to dress for bed and help her with meds.

My question really is what is a sign to know when mom needs more care.  It’s clear to me the past.6 months her mental faculties have decreased considerably.  I want to prepare her and prepare my brother for changes that may be coming in the next few months.  I feel like separately them because she may need more dedicated care and supervision would be detrimental to her and to him, but I feel that time may be approaching. 

Would a FT caregiver help or would she be better and safer somewhere where there is dedicated staff trained to work with patients in her state. I feel the move again would cause her to regress further.

THanks.


TessC
Posted: Saturday, December 7, 2019 10:44 PM
Joined: 4/1/2014
Posts: 5006


If it was me I would not move my mother until she really, really needed full time nursing home type care, and not just because her dementia and memory seems to be getting worse. Yes,, hire more aides to help if you think she needs more hands on care and stimulation, but a move to a nursing home should be the last resort because they don't  provide better care in most cases.

I tried to find a good nursing home for my mother a few years ago because I wanted to be her daughter again- not her caregiver - but the 2 best nursing homes in town were not good enough for my mother. So before you go that route- check the best nursing homes up and down and all around, because many people don't find them to be the best option. If you can avoid it, do so as long as possible. Good luck!


harshedbuzz
Posted: Sunday, December 8, 2019 4:05 AM
Joined: 3/6/2017
Posts: 1945


In your shoes, I would be looking to implement a plan B now for your brother. And I am sort of in your shoes; I have an adult son with a "high functioning" (ugh, I hate that expression) form of ASD under my own roof. College grad currently working and taking a professional certificate to increase his options in competitive employment.

The general consensus in the autism community is that adults with developmental delays should move into their own housing around the general age that their peers do. If he's always lived with mom, you can expect difficulty with the transition whatever the circumstances.  It might be better to have him adjust while your mom is still somewhat able to be there for him as she is likely his preferred person. 

How is he set up financially? Can he stay in his current retirement community after your mom passes? Can he afford it? If he needs some sort of housing assistance or voucher, you will want to start getting on the waiting list asap. If he does get some sort of governmental support aside from traditional social security, you'll want to make sure that any inheritance from your mom goes into a Special Needs Trust. 

It sounds like the level of support your mom gets is working for now. As she progresses, a MCF might be a good fit for socialization and care. 

gubblebumm
Posted: Sunday, December 8, 2019 3:12 PM
Joined: 7/12/2017
Posts: 1345


What are your expectations?  She is 94, she's pretty old and not everyone is Betty White, so what are you thinking she is able to do?
Kathy Joh
Posted: Sunday, December 8, 2019 3:13 PM
Joined: 12/7/2019
Posts: 4


My brother was part of the decision making process when they moved into the community. They were aware of his disability. But I think it’s not really a good fit for him. He’s just turned 65, so he’s at least 10 years younger than the others there. We’ve looked at a group home organization which might work out for him. But one thing to note he was just diagnosed with autism about 5 years ago. Back when he was in grade and high school he regularly saw an analyst and social worker but both said he seemed happy and content. At that time they diagnosed him with a perceptual handicap, And he’s always had socialization skills. Financially he’s fine. He’s got a pension, social security, a 401k, and money my parents put in a trust for him.

My mom, there are good and bad days. I worry while she has caregivers, she’s not really getting memory care help. Her verbal skills are lacking also. We are in a blessed position because we can generally afford to help her in whatever way possible. She has multiple caregivers, one that is outstanding. But I’m always afraid of someone new as she doesn’t react well to that. And I really am of the opinion she needs to be somewhere at least during the day that provides her more stimulation.


Kathy Joh
Posted: Sunday, December 8, 2019 6:16 PM
Joined: 12/7/2019
Posts: 4


Well maybe that is an issue I have then. Perhaps my expectations are unreasonable. Of course my primary concern is that she has a good quality of life is happy and safe for whatever time she has left whether it is a year or 5 years or more.
harshedbuzz
Posted: Monday, December 9, 2019 2:43 AM
Joined: 3/6/2017
Posts: 1945


Kathy Joh wrote:

My brother was part of the decision making process when they moved into the community. They were aware of his disability. But I think it’s not really a good fit for him. He’s just turned 65, so he’s at least 10 years younger than the others there. We’ve looked at a group home organization which might work out for him. But one thing to note he was just diagnosed with autism about 5 years ago. Back when he was in grade and high school he regularly saw an analyst and social worker but both said he seemed happy and content. At that time they diagnosed him with a perceptual handicap, And he’s always had socialization skills. Financially he’s fine. He’s got a pension, social security, a 401k, and money my parents put in a trust for him.

I know a couple of people with similar stories. It used to be a common situation where a mom or dad was diagnosed with ASD (usually Asperger's type) after their child was. I have a cousin who was diagnosed in his early 40's after my then 7 year old son was; my PCP's older brother got diagnosed at 51 when he was at a crossroads in his career. 

I would guess that a condo,  55+ community or CCRC would be a better fit for a 65 year old man who has been living in the real world. Most group homes are a mix of people who are not capable to have had a career in competitive employment often because of behaviors or intellectual disability. He likely would not have much in common with the persons with whom he might be matched. IME, people on spectrum often have very little patience with others on spectrum.

My mom, there are good and bad days. I worry while she has caregivers, she’s not really getting memory care help. Her verbal skills are lacking also.

What do you mean by the bolded? IME, memory care is kind of a euphemism for hands on care of a person whose dementia has robbed them of the ability to be independent around their ADLs with some activities planned to engage them at what ever level they are. That could be music, simple games, puzzles, movement activities or helping with chores like folding laundry or laying the table in their community. Memory care doesn't improve function except in the rare instance where the individual had been totally isolated or malnourished. 

  We are in a blessed position because we can generally afford to help her in whatever way possible. She has multiple caregivers, one that is outstanding. But I’m always afraid of someone new as she doesn’t react well to that. And I really am of the opinion she needs to be somewhere at least during the day that provides her more stimulation.

A day program a few days a week might provide some socialization and activities for her. A good MCF could do the same. You could even have that exceptional caregiver stay on to provide a bridge to the new community, be a friend to her going forward and to be an extra set of eyes for you. 

Good luck to you. 



SunnyBeBe
Posted: Monday, December 9, 2019 11:09 AM
Joined: 10/9/2014
Posts: 840


There are a few things that I might consider.  Living with a person who has dementia can be very stressful.  I'd consider that it might be that way for your brother. Even just watching her decline could be very stressful.  I'd explore if it's feasible moving forward, as your mother's condition progresses. Is he able to be responsible for her when the caregivers are gone? It's a big responsibility.  

I'd also consider that at age 94 and having dementia, your mom may not be able to enjoy activities as before. You say that she's refusing to use her hearing aids.  That may be a signal, so, I'd listen to that. I learned that my LO, after a certain point, was not able to process information, communicate with others, focus well, etc.  I learned to think of what was going on in her mind, with the dementia, and not what I thought was interesting, engaging, fun, etc.   

Are the part-time care providers able to gauge how your mother does after they leave? Is she able to practice proper hygiene after toileting?  Is she having incontinence?  I'd consider if your brother could handle this on his own.  

If you think that your mother's not talking much is related to depression, I'd discuss it with her doctor.  It could be the progression of the disease.  Eventually, my LO stopped talking.  I'm not sure of any therapy that would prevent this. Is your brother able to provide details of how your mother is when the care providers are not there, so that you can have her assessed, to see what level of care that she needs? 


MN Chickadee
Posted: Monday, December 9, 2019 11:53 AM
Joined: 9/7/2014
Posts: 934


I don't have much to say on many of these dynamics, but wanted to chime in that you might look into an adult day program or daycare for her. Some retirment communities run them, or shop around. We found it was a great way for my mom to get out of the house and socialize in ways she could handle. The staff are trained in dementia care and the activities are tailored to the person's abilities whatever they may be. We knew she was getting good snacks and lunch, was safe, and was doing what she could for activities and socialization. They even provided transportation. Combined with morning and evening caregivers may be a good situation for her. Or you could add a mid-day caregiver to do more hours of one on one, taking her out, playing cards or whatever she enjoys.
Kathy Joh
Posted: Monday, December 9, 2019 3:21 PM
Joined: 12/7/2019
Posts: 4


I appreciate all of the  feedback. As I write this and review my original post, I want to say that unlike some of the posters here, our situation is not dire. I don't mean to sound flippant about it. I said before we are blessed that at least we have the financial resources to get her the support she needs and also my brother. 

I do think that my brother living with mom has been a godsend for both. Mom at this point in her life having had him living with she and my dad before he passed, she's be lost without him. In my brothers case, I don't know that he realizes where she is at mentally. Not fully, But we have had discussions about where he wants to live post mom. I fear him living alone but this retirement community is not really a good fit for someone with his socialization challenges plus the age factor. He does have support groups he participates in outside of the home which has been a huge help for him and he's made some good friends there.  I do feel he needs to be somewhere that has some sort of support structure. It sounds like a group home, considering he is independent and generally functional, is not the answer.

As far as mom, I appreciate a lot of the feedback, And I think I realize I am projecting onto her what I think she needs versus what she may need. The good thing is she is still able to move freely with help of a walker outside of their apartment, she uses the bathroom religiously-she can get to it - no accidents, and she showers daily - That is one of the things her caregivers that come in daily help her with.


 
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