Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@tunared

Hi Janet7
My wife has tried mutiple drugs for MCI/Dementia but the side effects were very bad and not worth it to her. She decided to stop the drugs and I agreed with her.
So far, the only thing that has helped her is exercising. She is on a treadmill for about 90-120 minutes a day and we just started with a personal trainer too. I was surprised that the personal trainer is cheaper than the cost of the drugs ( with NO side effects other than tired muscles). To me, the cost doesn’t matter as long as i keep my wife around a little longer.
Good luck

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Hi Dan,
Your suggestion to have Will exercise is the second one I have seen today! I haven’t seen that suggestion from his doctors or from anyone else except this group and I thank you both very much. Where we are moving, there are sidewalks and if the weather isn’t good, we have free passes to the YMCA from his work.
I personally love to go into a pool. I am not a strong swimmer, but the water relaxes me, and will help my stress!
I thank you again, and God-bless!

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Janet7
My wife's neurologist has told her a few times that exercise is the only proven method to delay the progression, however, the progression varies with each individual. I've seen a slowdown in her progression and it makes me very happy. I could not picture life without her. 🙁

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@tunared

Janet7
My wife's neurologist has told her a few times that exercise is the only proven method to delay the progression, however, the progression varies with each individual. I've seen a slowdown in her progression and it makes me very happy. I could not picture life without her. 🙁

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So happy for you that exercise helped your wife live longer! I will definitely start a walking routine with Will. Having a routine works so well with him because he was raised on a routine for everything: at meal time, has to have the same glass, same spoon, same bowl, same time for bed and same time for waking, same kinds of food, etc. I guess it is this routine that gives him comfort, but on the other hand, change is very difficult for him and causes him to have anxiety and confusion. Can’t wait til we get back to Illinois in our small apartment and have a peaceful life, drama over!

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try many things and what ever works, keep with it and hold Will close.

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@janet7

So happy for you that exercise helped your wife live longer! I will definitely start a walking routine with Will. Having a routine works so well with him because he was raised on a routine for everything: at meal time, has to have the same glass, same spoon, same bowl, same time for bed and same time for waking, same kinds of food, etc. I guess it is this routine that gives him comfort, but on the other hand, change is very difficult for him and causes him to have anxiety and confusion. Can’t wait til we get back to Illinois in our small apartment and have a peaceful life, drama over!

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Hello @janet7 Just wanted to add a couple of observations based on my experiences with my wife. First, for years, she craved and needed her routine. Her days were identical for her and that was one of the only ways she came anywhere close to controlling her anxiety. I believe her routine was the only thing that gave her any sense of control in a life that was totally out of her control due to her disease.

Second, one of the things I learned while working for the National Alzheimers and Related Diseases organization, was that any change in a person with dementia's life can cause a noticeable downward change in their abilities. I just say this to perhaps prepare you for this possible outcome with your big change coming.

I'd also add the comment, just from my review of literature and studies, that while exercise is a good thing, there is no proof it has any actual positive impacts on the rate of decline in people with dementia or alleviates their disease.

Strength, Courage, & Peace

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@IndianaScott

Hello @janet7 Just wanted to add a couple of observations based on my experiences with my wife. First, for years, she craved and needed her routine. Her days were identical for her and that was one of the only ways she came anywhere close to controlling her anxiety. I believe her routine was the only thing that gave her any sense of control in a life that was totally out of her control due to her disease.

Second, one of the things I learned while working for the National Alzheimers and Related Diseases organization, was that any change in a person with dementia's life can cause a noticeable downward change in their abilities. I just say this to perhaps prepare you for this possible outcome with your big change coming.

I'd also add the comment, just from my review of literature and studies, that while exercise is a good thing, there is no proof it has any actual positive impacts on the rate of decline in people with dementia or alleviates their disease.

Strength, Courage, & Peace

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After 25 years in one house, we had to move for I could not manage climbing all the stairs anymore. I hired realtors, sorted all our accumulated stuff to give away or throw out, and looked for a place to move to without stairs. My husband had mild dementia, ad was of no help. In fact he fought me about moving. I had to do everything alone.

Anyway, during the moving process and afterwards in the new place, his condition became much worse. He is now close to the moderate stage of dementia. We are here now three years, and he is adjusted to living here. I just want to warn everyone living with a spouse with dementia that big changes, like moving, will make your person’s condition worse.

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Well, we are going through the Dementia getting worse because of our move back to Illinois. He has come apart and confused and not making sense with what he says. When we moved to NC 3 years ago, his Dementia was just beginning and not very noticeable. He wants to move back to Illinois where we have love and support because he realizes how he has changed, and not for the better. He recently had a pacemaker and that coupled with Dementia, is getting difficult for both of us. I am hoping and praying when we get back to Illinois in our small rental apartment, that it will be less confusing for him and more at peace.

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To the site moderator... I'm not sure which forum I need!
My wife's mom (93) is currently in a "Memory care " facility in our area (Salem, OR). We are discouraged by the extreme turnover rate of the "Caregivers", "Med techs", supervisors, and site managers in all of our local care facilities. For the dementia patients, who need consistency, this creates anxiety, confusion, anger, and exacerbates care problems and our ability to manage them. Mom is at a fairly advanced level of LBD with delusions, hallucinations, incontinence, and all the rest, so it is important that we consistent contact points. But the facilities we have tried, just can't keep staff or management on board. And moving her to find a better one is bad for Mom. We are "private-pay" clients. HELP!

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@qvt

To the site moderator... I'm not sure which forum I need!
My wife's mom (93) is currently in a "Memory care " facility in our area (Salem, OR). We are discouraged by the extreme turnover rate of the "Caregivers", "Med techs", supervisors, and site managers in all of our local care facilities. For the dementia patients, who need consistency, this creates anxiety, confusion, anger, and exacerbates care problems and our ability to manage them. Mom is at a fairly advanced level of LBD with delusions, hallucinations, incontinence, and all the rest, so it is important that we consistent contact points. But the facilities we have tried, just can't keep staff or management on board. And moving her to find a better one is bad for Mom. We are "private-pay" clients. HELP!

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Welcome to the Caregivers: Dementia group, @qvt. You posted in a good place to connect with others. You might also be interested in this related discussion with helpful tips from members:
- Memory Care or Behavioral Units for Dementia https://connect.mayoclinic.org/discussion/behavioral-units-for-dementia/

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@qvt

To the site moderator... I'm not sure which forum I need!
My wife's mom (93) is currently in a "Memory care " facility in our area (Salem, OR). We are discouraged by the extreme turnover rate of the "Caregivers", "Med techs", supervisors, and site managers in all of our local care facilities. For the dementia patients, who need consistency, this creates anxiety, confusion, anger, and exacerbates care problems and our ability to manage them. Mom is at a fairly advanced level of LBD with delusions, hallucinations, incontinence, and all the rest, so it is important that we consistent contact points. But the facilities we have tried, just can't keep staff or management on board. And moving her to find a better one is bad for Mom. We are "private-pay" clients. HELP!

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I worked in several facilities with memory care units and in the most humble and the most luxurious settings, consistency of caregivers is always a problem. Consistency is nearly impossible with staff covering three shifts, a staff primarily women with childcare and elder care needs of their own, the difficulty of the job where one can be hit, bitten, screamed profanities at, a job with often heavy physical requirements and unpleasant care tasks that may pay less than your local Walmart.
Putting aside the bottom line that any facility, you would have a relative in, must have an adequate level of cleanliness, quality of food, enough caregivers so basic needs are all met, what I found more important for the mental well-being of folks in Memory Care was the daily schedule of the structured environment. That things follow along in the same way day after day after day. I get up now, pills next, out for breakfast now, I sit here, back to my room going this way, out for an activity always in this area, I sit here. It’s the daily comfort of the daily schedule. The people will change constantly, but they’ll know my name. The other piece of Memory Care is that they do operate on 24 hours in the sense that if the resident is up and about at 3 am, no problem, sit in your spot, have a snack.
My husband has vascular dementia and is in a facility with Memory Care. We live in a college town in a rural county. We are really fortunate in that many of the caregivers are “country women”, lots of mother/daughter/son CNA combinations, student CNA and nurses getting their hours, plus the facility uses the facility van to pick up and drop off staff who need transportation to work (that’s new since COVID).

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