Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and 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.

@IndianaScott

@providence1960 TRUTH! Pure caregiver truth!

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And just had an hour of “one minute at a time”…
Mom was so confused this morning….but lots of distractions I provided calmed her although it took longer than usual today. It’s such a diabolical disease. At least the sun is out even if it is only 22 degrees. Will get Mom to the mall for some indoor activity. Spring and warm weather will be a blessing.

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@providence1960

And just had an hour of “one minute at a time”…
Mom was so confused this morning….but lots of distractions I provided calmed her although it took longer than usual today. It’s such a diabolical disease. At least the sun is out even if it is only 22 degrees. Will get Mom to the mall for some indoor activity. Spring and warm weather will be a blessing.

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Sorry to read this, @providence1960 Those days are tough indeed!

I agree — COME ON SPRING! It is only 7 here and light snow. At least Punxsutawney Phil did see his shadow so spring will be early — and he better be right!

Enjoy the sunshine and don't shop too much at the Mall 🙂

Strength, courage, and peace!

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I’m not sure where to start a post, but need help. Again. My husband has dementia-like issues after viral encephalitis was disgnosed in Jan. 2012. He has now started to sleep-walk and of course, doesn’t remember it. Last night he must have been up for some time and had opened closet doors, messed up tax papers on my desk, moved other things around and looked for food. I am a very light sleeper, but was exhausted and didn’t hear him. I need to get some kind of camera system for our house that connects to my phone. I will need at least two cameras and an alarm on my phone to alert me. Has anyone else done this? I wast to proceed assp.

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I use a baby monitor. It’s just audio but I can tell if my sister is up and moving around. It is not expensive and needs zero upkeep or installation. It does not however, connect to my phone. I plug it in at my bedside at night and then carry it with me to whatever room or outside during the daytime. I’ve never run out of battery.

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@sallysue

I use a baby monitor. It’s just audio but I can tell if my sister is up and moving around. It is not expensive and needs zero upkeep or installation. It does not however, connect to my phone. I plug it in at my bedside at night and then carry it with me to whatever room or outside during the daytime. I’ve never run out of battery.

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Great idea!

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@sallysue

I use a baby monitor. It’s just audio but I can tell if my sister is up and moving around. It is not expensive and needs zero upkeep or installation. It does not however, connect to my phone. I plug it in at my bedside at night and then carry it with me to whatever room or outside during the daytime. I’ve never run out of battery.

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Thank you! I did think about that, but I need to keep an eye on him if I’m grocery shopping, etc. I’m looking at Consumer Reports ratings, but wish someone could tell me how they like an indoor security camera.

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@shirleymac

Thank you! I did think about that, but I need to keep an eye on him if I’m grocery shopping, etc. I’m looking at Consumer Reports ratings, but wish someone could tell me how they like an indoor security camera.

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We have Canary cameras. The picture is very clear and the remote monitoring works great. Also you can speak to the person at home using the camera and the app.

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@faithful23

We have Canary cameras. The picture is very clear and the remote monitoring works great. Also you can speak to the person at home using the camera and the app.

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Thank you! I’ll look into that brand. I appreciate your recommendation!

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Hi @shirleymac Sounds like you have been getting some good suggestions here! In our case we, too, used a simple baby monitor for my wife. I got one at a garage sale for $5.00. I also put an old fashioned shop bell on the bedroom door. If the door was opened it jangled and the noise was enough to wake me, especially once I got attuned to it.

Now I have gone a bit more high tech and spent a bit more and bought a Nest camera. It sends an alert to my phone each time it 'sees' anything move. It also has a microphone so I can listen or talk, too. No monitoring expense, just their free app once you buy any Nest product. I went with Nest because I had installed one of their remote thermostats.

Just my ideas of what worked and works for us.

Strength, courage, and peace!

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@IndianaScott

Hi @shirleymac Sounds like you have been getting some good suggestions here! In our case we, too, used a simple baby monitor for my wife. I got one at a garage sale for $5.00. I also put an old fashioned shop bell on the bedroom door. If the door was opened it jangled and the noise was enough to wake me, especially once I got attuned to it.

Now I have gone a bit more high tech and spent a bit more and bought a Nest camera. It sends an alert to my phone each time it 'sees' anything move. It also has a microphone so I can listen or talk, too. No monitoring expense, just their free app once you buy any Nest product. I went with Nest because I had installed one of their remote thermostats.

Just my ideas of what worked and works for us.

Strength, courage, and peace!

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Thank you! I had not thought of Nest, specifically and didn’t realize there wasn’t a fee to use it.

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This site is so helpful…I like the idea of Nest. Thank you.
Spring is a blink away….and that makes me happy and hopeful for sunny days. I am sooo tired of winter.

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@providence1960

This site is so helpful…I like the idea of Nest. Thank you.
Spring is a blink away….and that makes me happy and hopeful for sunny days. I am sooo tired of winter.

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I am all in on welcoming spring this year! Been quite a winter so far and with more snow in our forecast it appears March is going to come in like a lion! At least we'll have the lamb to look forward to albeit later on! Cheers and think flowers! Here is one of my favorite varieties.

Iris yellow

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I need to clarify my background as I was not a caregiver for my husband before he died. He didn't allow that, but was in denial of his mental condition for years, and never was actually diagnosed, however we came close at one point. I studied on an Alzheimer's caregivers website to learn more about caring for a relative, who later died in a facility. Then I studied on a brain tumor caregiver's website when my husband was diagnosed and had surgery for a benign brain tumor. I studied with the help of the Alzheimer's group when my mother had a bleeding stroke and couldn't speak and was bedfast in a facility for over six years. All this time I was attempting to figure our my husband's inconsistent mental condition, and discussed it with my doctor. He said it was the beginning of Alzheimers, and I insisted the problem was frontal lobal because of the loss of his executive skills. He was in charge of the family business at the time and kept us in a bad financial condition because he really didn't manage and wouldn't cooperate with anyone. So I had to learn to manage through many a crisis and keep the household stable while he was making my life miserable and telling lies to make me mad enough to leave him. I didn't budge.
He was treated for prostate cancer, then a brain tumor, and then metasticized cancer of the spine. That took his life in short order, all the while he was estranged from me and not living in reality. He had an eating disorder and did not treat his diabetes, or his alcoholism. I am experienced enough to share ideas on surviving a mind going bad, for whatever reason. My advice is you can control things to a point, but you will not win against these terrible deseases, some of which are made worse by a person who refuses to cooperate in normal care for good health. Do not expect to be able to do a good job of care giving, just do what you can manage at the time and pray to God about the rest. Get some support for yourself and arrange time off for you. Do not feel that you absolutely must care for a person in your home whom you think might harm you. if you don't help yourself, you will not be able to help others. That is my motto for just about everything these days. Dorisena

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@donnajane

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.

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It seems like everyone thinks I’m the one who is losing my mind! Most people have no idea how frustrating answering and clarifying the same question is, and yet, the same person can play bridge. I am my husbands caregiver and I get so frustrated, but then I finally remind myself to take the focus off him and drop the judgement. For me, I get tired and know that the likely hood of all this effort is what? So am training my brain to stay in the present:

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@dorisena

I need to clarify my background as I was not a caregiver for my husband before he died. He didn't allow that, but was in denial of his mental condition for years, and never was actually diagnosed, however we came close at one point. I studied on an Alzheimer's caregivers website to learn more about caring for a relative, who later died in a facility. Then I studied on a brain tumor caregiver's website when my husband was diagnosed and had surgery for a benign brain tumor. I studied with the help of the Alzheimer's group when my mother had a bleeding stroke and couldn't speak and was bedfast in a facility for over six years. All this time I was attempting to figure our my husband's inconsistent mental condition, and discussed it with my doctor. He said it was the beginning of Alzheimers, and I insisted the problem was frontal lobal because of the loss of his executive skills. He was in charge of the family business at the time and kept us in a bad financial condition because he really didn't manage and wouldn't cooperate with anyone. So I had to learn to manage through many a crisis and keep the household stable while he was making my life miserable and telling lies to make me mad enough to leave him. I didn't budge.
He was treated for prostate cancer, then a brain tumor, and then metasticized cancer of the spine. That took his life in short order, all the while he was estranged from me and not living in reality. He had an eating disorder and did not treat his diabetes, or his alcoholism. I am experienced enough to share ideas on surviving a mind going bad, for whatever reason. My advice is you can control things to a point, but you will not win against these terrible deseases, some of which are made worse by a person who refuses to cooperate in normal care for good health. Do not expect to be able to do a good job of care giving, just do what you can manage at the time and pray to God about the rest. Get some support for yourself and arrange time off for you. Do not feel that you absolutely must care for a person in your home whom you think might harm you. if you don't help yourself, you will not be able to help others. That is my motto for just about everything these days. Dorisena

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Thank you!

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