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Scott, Volunteer Mentor
@IndianaScott

Posts: 295
Joined: Oct 22, 2015

Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

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.

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Colleen Young, Connect Director
@colleenyoung

Posts: 3339
Joined: Jul 23, 2014
Posted by @colleenyoung, Aug 30, 2016

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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donnajane
@donnajane

Posts: 2
Joined: Sep 16, 2016
Posted by @donnajane, Sep 15, 2016

Please join me in to this group. I am caring for my husband with early stages of dementia. He is constantly asking the same questions which can be nerve racking. He can still sit in a group and laugh and converse so many do not realize what is happening. He only drives in and around our area where he has lived since childhood. Never any distance. We play bridge and he amazes me how well he can play complicated hands. We exercise almost daily at a YMCA. He does do some yard work. He has started constantly itching his head, but I can see nothing. Wondering if a dematologist is needed to check.


Colleen Young, Connect Director
@colleenyoung

Posts: 3339
Joined: Jul 23, 2014
Posted by @colleenyoung, Sep 15, 2016

You are most welcome in this group @donnajane. It might give you piece of mind to see a doctor about his scalp to ensure there isn’t something there that you can’t see. But also be prepared that this may be another symptom of the disease.
It is wonderful that the two of you can still be so active both physically and socially.

When others are not able to realize what is happening, I hope this group can be your virtual shoulder to lean on, a place where you can talk frankly and openly. We look forward to getting to know you.

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lindabf
@lindabf

Posts: 12
Joined: Mar 30, 2016
Posted by @lindabf, Sep 16, 2016

I really get what that’s like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He’s 74 and otherwise very healthy. For awhile I thought I’d just gotten very boring and bad at communication since we could discuss something one day and the next, he didn’t even remember we’d discussed it. Then I had one of those stomach-sinking “Aha’s” – that’s a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV — and it’s the same frustration every day — apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn’t get it — the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it’s just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I’m pretty sure that’s one of those conversations he won’t remember having. And despite the fact that he doesn’t want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He’s still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I’m so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It’s discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease–but I am sure looking forward to the kind of progress with dementia treatment that we’ve seen with cancer in the past few years! Glad there’s a place to share about it with people who don’t pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!


Scott, Volunteer Mentor
@IndianaScott

Posts: 295
Joined: Oct 22, 2015
Posted by @IndianaScott, Sep 16, 2016

Hi @lindabf Nice to e-meet you. No eye rolling here in this group and pats are only ‘atta-girl!’ (or boy) on the shoulder in support!

I was my wife’s primary caregiver for 14 years as she battled brain cancer and suffered from many of the symptoms of dementia. She passed at 63 in July. She and I were also secondary caregivers for her mom when she had dementia.

The line separating ability and inability, as it changes almost daily with our loved ones is one of the supreme challenges in caregiving I agree. Being supportive, gently encouraging, but willing to acknowledge the line in the sand when it is arrived at can be a ‘Mission Impossible’ at times. Frustrating, saddening, and angering…each of which we, caregivers, force ourselves to mask as much as possible.

I send you strength, peace, and continued courage!


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Sep 16, 2016

@lindabf My experiences are similar to yours and I remember our family trying to figure out if it was normal memory issues or something more severe; so frustrating and unsettling, not to mention overwhelming.

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rmftucker
@rmftucker

Posts: 25
Joined: Sep 15, 2016
Posted by @rmftucker, Sep 16, 2016

@lindabf I went through almost exactly what you are observing for about 3 years and finally decided to mention some of my concerns to my husband’s doctor. My husband was willing to take the testing when suggested by his doctor. He would never have consented to it if I had surged it. The same with giving up driving. My children and I were concerned about how we could convince him to stop driving although he only drove around locally where he was familiar with roads, etc., but when his doctor said he really shouldn’t be driving and visited with him a bit, he hasn’t even suggested driving since. He still has his driver’s license, but I don’t think he will be renewing it as it will require Dr’s permit and probably a driving test which he could not pass. We’ll deal with that when the time comes nearer his birthday.
One day at a time.


Scott, Volunteer Mentor
@IndianaScott

Posts: 295
Joined: Oct 22, 2015
Posted by @IndianaScott, Sep 16, 2016

Hi @rmftucker You bring up an interesting point, which I observed with my wife as well. I could suggest something till I was blue in the face and she would at best bristle and pitch a fight over it, or more often just reject it out of hand. Not so if the word came from her chief doctor. His word was gold to her and if he said A, B, or C, so it was! His word was also what ended my wife’s driving. After he said ‘no more’ she never ever brought it up and I know it was a huge blow to her at the time.

Amazing similarities….

Strength and peace,

Liked by ladycat, lindabf


sallysue
@sallysue

Posts: 40
Joined: Oct 13, 2016
Posted by @sallysue, Oct 13, 2016

I don’t really know but it seems to me you should see the dermatologist just so you know for sure it is not something you can do something about. If he says it’s nothing skin wise then you know it is the Aslzheimer and we will work on distracting techniques. My question is; my sister lives with my husband and I and has had Alzheimer’s for about 5 years. We just got it diagnosed last month (9/16). She has not said another word about it since then. Do you think I should bring it up to ask her how she feels about it? Does she want to tell our siblings? We have already done the DPOA, wills etc. what do you think? Does she really need to talk about it? Should I push for her permission to tell our siblings?


sallysue
@sallysue

Posts: 40
Joined: Oct 13, 2016
Posted by @sallysue, Oct 13, 2016

This is what I am looking for. If I post this does it mean I’m part of the care for dementia people group?


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Oct 13, 2016

sallysue, my mom never could come to grips with the fact that she had Alzheimer’s and therefore never shared the news with family. My sister and I talked with our aunts and other family who needed to know but we didn’t publicize to others. Mom knew there was something wrong and she grieved it so much but just couldn’t say he words. I think we honored her in not asking her to tell others. Hope this helps you.


sallysue
@sallysue

Posts: 40
Joined: Oct 13, 2016
Posted by @sallysue, Oct 13, 2016

Thank you @nanax2! That is what I needed to hear. My sister is not grieving it so far. Our lives continue and she follows my suggestions about schedules, diet and lets me give her her meds. So with your supportive reply I think I will just let her be herself and answer the siblings questions as they arise. Thank you so much it has been nagging me and my husband for these last 4 weeks.

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safetyshield
@safetyshield

Posts: 210
Joined: May 24, 2016
Posted by @safetyshield, Oct 13, 2016

@sallysue In my opinion I do not believe you should sister in talking about her Alzheimers but just let her know and give here the environment that you are there to listen without judgement or negativity. She will be going through a rollercoaster of emotions and she will need you to be her rock. I know this will be hard but she will be going through emotions while the Alzheimers takes control. Keep in touch with this conversation group for your support.

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safetyshield
@safetyshield

Posts: 210
Joined: May 24, 2016
Posted by @safetyshield, Oct 13, 2016

If you want to be we are here for you and what ever your needs are

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Colleen Young, Connect Director
@colleenyoung

Posts: 3339
Joined: Jul 23, 2014
Posted by @colleenyoung, Oct 13, 2016

@sallysue, first of all, welcome! There are a few things you can do to make sure you get the messages relevant to you.

1. Because you posted a message in this discussion, you will automatically receive an email notification everytime a new message is posted here. If you no longer wish to get these email notices, simply click “unsubscribe” in the next email notice.

2. Follow the Caregiver group to get relevant messages in your Daily Digest. Here’s how to follow a group http://mayocl.in/2ebIxQu

3. To get only messages relevant to the discussions and groups you follow:
a. Go to Account Settings https://connect.mayoclinic.org/account
b. Scroll to the bottom.
c. Click the box that says ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.

Learn more about setting your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/

Let me know if you have any questions. I’m sure this is helpful for everyone in the group.

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