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.

@loisj

I am also caregiving for my spouse who was diagnosed with dementia. He had a fall in January, 2016 which resulted in a subdural hematoma. His short term memory was affected and he has gone down hill since. We are coping but, boy, it is hard.

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Hello @loisj Nice to e-meet you here and welcome to Mayo Connect! I am Scott, and while it was sad to read why you are here, it is good your are here at Connect with so many fellow caregivers! I believe you will find this group a solid one made up of folks who love to listen, share, and give tips and ideas on how to make our caregiving journeys a bit more bearable and manageable.

I was my wife's caregiver for her while she battled brain cancer, during which time she exhibited many dementia-like symptoms. I also was a secondary caregiver for my mother-in-law during her battle with dementia. I agree — caregiving is just plain hard!

I also worked for the national Alzheimer's Association for several years fundraising for their research efforts. From my time there, as well as with my mother-in-law, I recall medical interventions often cause a noticeable decline in cognitive functioning. In my mother-in-laws case, it even happened after simple doctor's appointments. It is an odd, but consistent outcome.

I look forward to hearing more from you when you can post. How long have you been caregiving?

Strength, courage, and peace!

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@debbraw

Hi @daisy2011 – I'm Debbra. My husband was diagnosed with Mild Cognitive Impairment, which seems to be progressing toward dementia. I totally relate to your loneliness. For me, the erosion in emotional connection is the hardest part. My heart is going out to you. Stay here on Connect. it's a great antidote to lonely evenings! Is there anything you do to be less lonely? Visit with friends? Call family? I'd love to hear what helps for you. For me it's calling two friends: one to keep my husband company and one to keep ME company – separately!

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@debbraw what a great idea! Calling 2 friends. I shall try it. Althought husband has aphasia, can't talk well. We shal see.

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@IndianaScott

Hi again, @daisy2011 Yes, I agree, this disease can be very isolating to caregivers. It is what actually brought me to Mayo Connect in the first place. I found it a great way to be at home and yet reach out into the entire world and break that isolation. Or at least break it a bit! It is very hard when our loved one isn't communicating much anymore for sure. I know it was very hard in my case just as you describe!

Don't forget many of us are here and happy to visit, answer questions, and simply chat! it can be a great escape while still being right there for your loved one!

Strength, courage, and peace!

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@IndianaScott . Isolating very true! That is how we are at this point. I cannot understand when my husband tries to speak. Frustrating for him as well. No help ffrom physicians, etc; just patience and praying to be able to figure it out. Just found out that Primary Progressive Aphasia is a rare disease when not caused by stroke. At my wits end. So depressed, getting therapy….and praying for strength to get through each day. Thanks for your thoughts.

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@bflattenor

Go to Mayo Clinic Connect B_PLL. I seem to have my own group.

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@bflattenor I know how that feels….lonely and frustrating when the disease is supposedly RARE. my husb has Primary Progressive Aphasia but without stroke. Also Mild Cognitive Impairment which has escalated to a dimentia much like Alzheimers. Good luck . God Bless.

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@mnina

As a Carer, I find I have to make so many decisions in a new arena. It can be mentally exhausting trying to do that right thing, which can change from week to week or day to day. Sometimes my husband behaves like a child, his world has shrunk so much in his illness. I too believe in keeping it simple and sometimes having to steer things away from stress and or conflict. For me, it’s ok because I assess each thing individually and it’s an option to make decisions for my sick husband, that would otherwise bring heart ache. Most of all, I try to take care of myself, which I’m not good at but getting better. After 4 years, I’m finally starting to get my own medical check ups, I’m 61 and it’s taken 4 years to bring my own self care to light. Wishing you a peaceful day and time to take care of yourself too.

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Hi minina.. I am new here and not sure you will get this but my husband was diagnosed with behavioral variant Frontal temporal dementia in 2013 and passed away in 2017. He was 63. I went through SO much partly because he was so young. I am writing this because you can make it through this awful decease. I mananaged to take care of myself and him as well caring for him at home until the last few months.

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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I moved in with my mom. I am her only daughter. I have 2 brothers who live out of state.
I have my daughter come in every Sunday for 8 hours so I can go see and be with my husband. He is taking care of our house and pets.
I also have a volunteer come in for 4 hours on Tuesday's so I can go shopping.

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@cathyb

Hi minina.. I am new here and not sure you will get this but my husband was diagnosed with behavioral variant Frontal temporal dementia in 2013 and passed away in 2017. He was 63. I went through SO much partly because he was so young. I am writing this because you can make it through this awful decease. I mananaged to take care of myself and him as well caring for him at home until the last few months.

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Hi @cathyb Nice to e-meet you here! I am glad you joined in Mayo Connect and especially the Caregiving discussions. I am sorry to read of your husband's journey with dementia, but am thankful you reached out here! The isolation of caregiving is so typical and can be so incredibly overwhelming — at least it was for me that is for sure! I found Connect exactly because I was looking for folks who had other caregiving experiences so I could have some comradery during a time when my life was consumed with caregiving. I also understand a bit about your age comment in that my wife was stricken with her disease when she was 49.

It is so wonderful that caregivers share so that other caregivers know they are not alone and at times the sharing of ideas, tricks, hints, and anyting that worked can be a true godsend.

Was there anything specific that helped you through the tougher times that you might want to share here to help others?

Strength, courage, and peace!

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@baney

I moved in with my mom. I am her only daughter. I have 2 brothers who live out of state.
I have my daughter come in every Sunday for 8 hours so I can go see and be with my husband. He is taking care of our house and pets.
I also have a volunteer come in for 4 hours on Tuesday's so I can go shopping.

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Hello @baney Nice to e-meet you here on Mayo Connect even if it is due to some terrible circumstances. I am sorry to hear of your mom's need for caregiving. It is wonderful to read that you have some care assistance each week! That is so important for you and awesome that you have those resources available! That is also terrific that your husband can manage the 'home front' and the pets! I bet they are really happy to see you when you get home too!

If I may ask, what is your Mom suffering from?

Strength, courage, and peace!

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@IndianaScott

Hello @baney Nice to e-meet you here on Mayo Connect even if it is due to some terrible circumstances. I am sorry to hear of your mom's need for caregiving. It is wonderful to read that you have some care assistance each week! That is so important for you and awesome that you have those resources available! That is also terrific that your husband can manage the 'home front' and the pets! I bet they are really happy to see you when you get home too!

If I may ask, what is your Mom suffering from?

Strength, courage, and peace!

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My mom has Dementia diagnosed 10 years ago. On April 22, 17 took mom to the ER for a stroke. While in ICU on April 23 she had her second stroke.
My dad had his own medical problems main one being CHF. He fell on April 24th and fractured his back. He passed away May 15th.
Mom was in rehab when she got sick and was admitted into the hospital. They told us to say our good byes. I brought mom home on June 1st. In the first 3 months if being home she had rallied twice. In December hospice had to discharge her.
So mom has mixed dementia and strokes.

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@baney

My mom has Dementia diagnosed 10 years ago. On April 22, 17 took mom to the ER for a stroke. While in ICU on April 23 she had her second stroke.
My dad had his own medical problems main one being CHF. He fell on April 24th and fractured his back. He passed away May 15th.
Mom was in rehab when she got sick and was admitted into the hospital. They told us to say our good byes. I brought mom home on June 1st. In the first 3 months if being home she had rallied twice. In December hospice had to discharge her.
So mom has mixed dementia and strokes.

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Hi again, @baney I am sorry to hear of your dad's passing. My dad passed from the same thing.

It also sounds like your mom has had quite a challenging health journey for sure. My wife was in home hospice care for 14+ months and it was a real blessing that she could be home and still receive the care she so desperately needed. Sorry to hear she has been discharged from hospice, but then again that may be a good sign I guess.

I will keep you in my thoughts and hope for the best for you and yours!

Strength, courage, and peace!

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@dianajane

@IndianaScott . Isolating very true! That is how we are at this point. I cannot understand when my husband tries to speak. Frustrating for him as well. No help ffrom physicians, etc; just patience and praying to be able to figure it out. Just found out that Primary Progressive Aphasia is a rare disease when not caused by stroke. At my wits end. So depressed, getting therapy….and praying for strength to get through each day. Thanks for your thoughts.

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@dianajane – it must be heartbreaking not to be able to understand his words. My husband struggles with words, but he usually gets them out in one form or another. Can your husband write his thoughts? Curious whether you and your husband have been through the HABIT program at Mayo ? It's specifically for people with Mild Cognitive Impairment and their partners. It was a godsend to us. My heart is going out to both of you.

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@debbraw

@dianajane – it must be heartbreaking not to be able to understand his words. My husband struggles with words, but he usually gets them out in one form or another. Can your husband write his thoughts? Curious whether you and your husband have been through the HABIT program at Mayo ? It's specifically for people with Mild Cognitive Impairment and their partners. It was a godsend to us. My heart is going out to both of you.

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In reply to @dianajane "@debbraw" + (show)

@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it.

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@dianajane

@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it.

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@dianajane – the HABIT program is a Mayo program for people who have been diagnosed with Mild Cognitive Impairment and their spouses. Not sure where you are located, but they run programs in Jacksonville, FL, AZ and MN. Habit is an acronym that stands for Healthy Actions to Build Independence & Thinking. Here's a little clip about it. Definitely worth checking into. https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/multimedia/vid-20088028
Meantime, I'm glad you are here in the Connect Forum. Let me know what you think of the Habit video. OK?

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@dianajane

@debbraw what a great idea! Calling 2 friends. I shall try it. Althought husband has aphasia, can't talk well. We shal see.

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@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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