Suggestions for a "resistant" dementia person?

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Any suggestions?

We, my wife and I, are responsible for the care of my aged (86) Aunt who lives at home. We live out of state and visit once a month. She suffers from dementia which seems to cycle in intensity from day to day.

We have, on my aunt's behalf, contracted to a local home care company for 24x7 care and my Aunt has been getting care for the last year. We have recently added PT (physical therapy) 2-3X per week and we are finding the we are getting increased resistance from my aunt to: getting up and going to the bathroom every 2 hours (dealing with incontinence), doing her breathing exercises (to increase her O2), PT, going on local trips (once or twice a week), and other daily activity (showering, playing games, etc.).

We have tried, encouragement, distractions, directness, subterfuge, having visitors, ... Just looking for other's experiences and helpful thoughts. It gets to be difficult for the caregivers when we are requesting they get my Aunt to do things and she resists or refuses - they then give up. This doesn't sit well with us but we also understand the challenge of doing a job when "the client refuses care".

Anyway, Thanks for any thoughts you may have,

Jim

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@sunnygirl1 you rock that is very well put. Im having an issue with taking over the role of parent fwith my mom. She thinks she can take care of herself but she can rember anything. I cant help getting angry at her. I try to remember she has an illness but i need to vent my frustration i thought about boxing but I have nerve damage from shingles. My hands dont work that good anymore. I need help
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Have you talked to her doctor about the progress of her dementia? I think that sometimes we may interpret a dementia patient's actions as refusal or noncooperation, when in reality, the person may not be able to focus or function in the way we are expecting them to do. I would explore something like Ataxia. It prevents a person from being able to move the body the way they want to. Also, there could be brain damage that prevents the patient from focusing on a task. Have you had her evaluated to see what if any types of therapy may still be beneficial to her?

I think I might explore from a specialist the types of things that she would still be able to benefit from, taking her dementia into consideration. This may ensure that your expectations for someone of her age and condition are reasonable. Some people who are 86 years old and have no dementia, still prefer to just rest and not engage in activities, therapy, etc. They are just tired and not interested. I can understand it.
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I empathize with your challenges. My mother has severe chronic congestive heart failure with acute CHF, vascular dementia with small vessel disease, acute atrial fib and a personality disturbance on top of the dementia. My wife and I encountered a pattern of care resistance resulting in a cycle of aspiration pneumonia, loss of balance, falls, confusion, inability to conduct logical reasoning, agitation and inability for self care. We made the difficult decision to place my mother in a nursing home 1.5 years ago. We also utilized the court to get full permanent guardianship for her. What I can tell you is that the resistance is coming from a place of fear on your aunt's behalf. She doesn't want to end up in a facility. The positive side of placement for my mother is that she now receives a "smaller environment" to operate within, i.e., a bed with safety rails and scooped mattress to prevent rolling out of bed; monitored medication; good meals offered at proper times; continuous nursing support etc. My mother's personality disturbance results in lying and story telling. She will tell you that she hasn't seen a doctor in the nursing home since she's been there; that the nurses wake her up at 4:00 AM and run her down the hall for a thyroid test - even though she can barely shuffle; tells us that persons visit her at 12:00 midnight etc. What I am trying to demonstrate is that my mother needs 24/7 care and that it may be approaching where your aunt might need the same thing. Best of luck to you.
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Jim
You and your wife are heros for looking out for your aunt
As long as she is accepting of caregivers in her home - isn't suffering other ills from falls UTIs etc don't sweat the small stuff
My mom will still willingly brush her teeth and wash her hands and face but it's a battle to put her in the shower and wash her hair so if it only happens once a week I'm grateful
The above posters have been on this journey a long time and although my mom's dementia didn't really become a nightmare until about 2 years ago I've been her caregiver for nearly 9 years after she had some serious falls - Medicare only covers so much PT and she's used up her sessions even though she's had 4 serious falls since New Years - disappointing since it took a switch of home Hal agencies to find the right pt to even work with her since she's a feisty one
Good luck
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It doesn't sound as though Jim's aunt is complaining of boredom, though, do you think FF?

Jim, you're doing all the right things. You have provided your aunt with very good care in the familiar environment of her own home. You have ensured that she has every opportunity to conserve her health and wellbeing. She is safe, she is well taken care of.

If she is becoming increasingly resistant to taking the opportunities that are in front of her, you should still offer them, encourage her, continue to explain the purpose, see the value of enriching her quality of life. But, as I see you clearly understand, while one can offer, encourage and enable, one cannot force.

After all, it is her benefit and enjoyment that you're doing these things for. If she doesn't want to, even if her lethargy is the result of dementia, then what's to be gained by trying to make her?

You and I, all we caregivers, can't help seeing it by our own standards: that if we did nothing all day but sit and sit - not even sit and think! - we'd be so bored and frustrated it would be torture. But when you're 86 and you have well-developed dementia, then a comfy chair, nice food and kind people are your version of 'a loaf of bread, a jug of wine and thou beside me in the wilderness...'

In short, her wants are simple and you are meeting them *beautifully.*
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Jim, please remember your Aunt is 86 years old, she probably has a very good reason for not wanting to do things for herself.... she is tired. One doesn't have the same energy one had lets say 5 years prior. Even I don't have the same energy today at 70 compared to 65... it's like, poof, where did it go??

I have noticed the same with my Dad [94]... he has physical therapy in the mornings and afterwards he's too tired to join in any afternoon activities where he lives, he rather sit in his recliner and watch local 24-hour news. I figure at his age he should be able to do what he wants... if he wants to watch TV, so be it.

I wonder if your Aunt would like to be around people of her own generation? Would she like to visit an adult day care? Or maybe consider moving into Assisted Living? That way she has her meals with other table mates. The boredom would be less.
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With my mom, what sometimes works is having the aides at the NH say " now it's time to..." as opposed to "do you want to...?"

Has she been seen by a geriatric psychiatrist? Many of us here have found that antidepressants and/ or anti-anxiety meds make a huge difference in our loved ones' motivation.
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