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JJGood19 Asked April 2016

Mom with dementia getting frustrated due to loss of independence. Any input?

Also having public outbursts. Six months ago my parents moved into Assisted Living. Then my stepdad had an extended hospital stay & we hired a care giver/companion to stay with Mom during the day to help her with her confusion. Over these six months in addition to the move, mom is no longer allowed to drive by herself. So she has basically lost what little independence she had. She's also in great denial about the level of help that she needs. Stepdad has recovered & kept the caregiver to assist them both. Now they don't go anywhere unless the caregiver takes them. This means that going to the gym, grocery shopping, doctors appointments, laundry, and even lunch out is all done with the caregiver. Recently Mom has started blaming the caregiver for her loss of independence, threatening to fire or hit the caregiver, and even had a few meltdowns in public where she is very mean and hateful towards the caregiver. My stepdad won't consider trying a different caregiver from the same agency and is ready to ship mom off to live with me! I realize that a new caregiver could potentially be the focus of Moms frustration, but I was thinking maybe if Mom had her own caregiver, separate from the one my stepdad views an indispensable, even if only for a few outings a week, it might alleviate some of moms frustration. Coincidentally Mom has also been complaining that everything suddenly tastes very salty???? Any input is greatly appreciated. P.s. I live over 1400 miles away and can't convince my stepdad to move closer to me.

JJGood19 Apr 2016
sunnygrl....
In Mom's mind, coming to live with me will make her happy, but what she doesn't seem to realize or care about is that she won't gain any independence regardless of where she is living, and she will grow to be angry at me...or potentially take it out on my kids or hubby. I have already reached out to someone local who helps those in my situation through an elder care organization.
I agree with you, "It's unlikely that you will find a caregiver that she will like, because she may be unhappy with anyone. She may also be unhappy wherever she is living. Finding contentment and peace is a challenge for dementia patients."

JJGood19 Apr 2016
Thanks sunnygrl and cwillie.
Things are cordial, several people who see my parents on a weekly basis are reporting back to me.
Spoke to her doctor about getting a referral to another doctor qualified to do those types of assessments, apparently there are limited docs in that specialty in her hometown.

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cwillie Apr 2016
It sounds as though her dementia has advanced quickly and her husband is having a tough time of it. I agree, an evaluation should be done of her current cognitive capacity, she seems totally unaware/unaccepting of her new reality. Perhaps meds will help calm and ground her.

Who is reporting all the problems to you? Do you have a cordial relationship with him? It sounds as though it is time for you all to get together, even if only with a conference call, to formulate an acceptable a plan for the future.

Sunnygirl1 Apr 2016
I think I would start with her doctor who is familiar with her dementia. Tasting salt can be caused by a number of things, such as dehydration, infection, medications, Vitamin deficiency, illness, etc. Perhaps, her doctor can figure it out. I think I would also be equally concerned about the progression of her dementia. The behavior you are describing sounds like that is what is happening.
I
It sounds like she has become resistant to care, aggressive and anxious. Sometimes, this anxiety can be treated with medications. I'd discuss that with her doctor. With my cousin, medication really helped her have much more peace of mind and she loves her caretakers.

You say that your stepdad is ready to ship his wife to you. That tells me that her behavior is overwhelming him. It is very stressful to be around a person with advancing dementia. Often they cannot be reasoned with, make up things and make hurtful comments. No wonder your stepdad is so desperate. Some posters suggest that couples stay together in IL and AL, but to me, it's not fair to the spouse who does not have dementia. It's just too much for another senior to deal with around the clock. You can discuss this with your stepdad OUT of your mom's presence to see how he feels about.

I think I would have her accessed to see what her needs are now. It's unlikely that you will find a caregiver that she will like, because she may be unhappy with anyone. She may also be unhappy wherever she is living. Finding contentment and peace is a challenge for dementia patients. They may not be capable of doing that due to the brain damage.

I would focus on placing her a place where she can have her daily needs attended to and where they understand dementia and work with the person. I would check out a Memory Care Assisted Living facility, as regular assisted living often have difficulty handling a resident who is aggressive and resistant to care. A person who is trained to do this can help you with the options. I wish you all the best.

JJGood19 Apr 2016
cwillie -- to clarify, my parents live in a combined AL & Independent Living community and have access to the transportation, meals and activities, however they have not joined many of the activities and I do not think they have even attempted the transportation. As far as I know, right now they are not paying for any additional AL care either.
AND YES...it is a small town, but has good resources.
Mom is unhappy and confused, she's physically very fit and active and sees the other residents as "much older" and does not want to join them in their activities. She doesn't recognize that it's dangerous for her to drive on her own, she thinks she's a fine driver (and she's OK, but drives by habit more than anything else, so watch out at the stop signs!!! been in the car with her at a two way stop she assumed was 4-way).
So six months ago she was living in her home of over 20 years, driving to workout on her own, driving to the grocery store on her own etc. Now she can't drive or go anywhere on her own, she's in a new, cramped "apartment" and she has very little say in any decisions about her daily life. My stepdad's doctor appointments are numerous and most days things revolve around his doctor appointments or health related issues/needs. Mom is unable to help him due to her dementia and not recognizing that he needs help, so she gets resentful of the caregiver from that perspective too.

Also, I wonder what the significance of the all her food suddenly being too salty is....

cwillie Apr 2016
Is the AL in a very small town or rural setting? I'm a little surprised that the only options available for them to get out would be the caregiver, often ALs have their own transport available to take residents shopping or on other outings. Public transit or taxis may also be an option for both of them instead of total reliance on this caregiver. It sounds as though your mom is unhappy (and confused?) and is lashing out at the closest available person, that is often a regular caregiver.
I'm also wondering about the level of care they are receiving from this AL, it sounds more like an Independent Living senior's building, is that what you meant to say? Assisted living means just that, there should be assistance, meals, doctors etc on site already available to them.

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