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.

Hello:
Hope you are doing well.

Different parts of the brain are victim depending on the type of dementia.
These different areas of the brain cause different presentations, symptoms, outcomes and progression.

For instance - Damage to the frontal lobe of the brain eventually causes problems with intelligence, judgment, and behavior. Damage to the temporal lobe affects memory. And damage to the parietal lobe affects language.

In my case - wit Lewy Body Dementia - according to testing - the frontosubcortical systems dysfunction and bilateral temporal dysfunction.

I apolozige if this has already been mentioned.

This site has some great info for you:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/vascular-dementia

Here is a little high level info that might help lead to further info.
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/vascular-dementia

**I am not a Dr - I am a patient.

Peace
Larry

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Hi, I'm new here. I care for my husband who has been diagnosed with Alzheimer's. Just reading the stages I'd say he is in the late middle stage? He has alot of pain on the front right side of his head. there are times when he will be lalking or walking or eating and he just stops and gets this stare. For a little bit he can't function at all. Then he will slowly come out of it. Then he complains of " being judo chopped in the back of the neck". He's been checked for seizures and nothing found. Any one familiar with this?

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@teatime2

Hi, I'm new here. I care for my husband who has been diagnosed with Alzheimer's. Just reading the stages I'd say he is in the late middle stage? He has alot of pain on the front right side of his head. there are times when he will be lalking or walking or eating and he just stops and gets this stare. For a little bit he can't function at all. Then he will slowly come out of it. Then he complains of " being judo chopped in the back of the neck". He's been checked for seizures and nothing found. Any one familiar with this?

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Hi @teatime2 While I am sorry to read of your husband's diagnosis, I am pleased to see you found Mayo Connect and this group. I am Scott and I was my wife's primary caregiver as well as one of the caregivers for my MIL.

I don't know about the pain part, but I do know 'the stare' and checking out. That was common with both my wife and MIL. My wife also complained constantly of headaches, but not in her neck.

How long has it been since your husband was diagnosed?

Strength, Courage, & Peace

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@IndianaScott

Hi @teatime2 While I am sorry to read of your husband's diagnosis, I am pleased to see you found Mayo Connect and this group. I am Scott and I was my wife's primary caregiver as well as one of the caregivers for my MIL.

I don't know about the pain part, but I do know 'the stare' and checking out. That was common with both my wife and MIL. My wife also complained constantly of headaches, but not in her neck.

How long has it been since your husband was diagnosed?

Strength, Courage, & Peace

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Thank you for answering. He was diagnosed around 2011. Looking back I can see that he probably had this before that date,but since he is a stroke patient I really jus chalked the memory loss up to that.

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@colleenyoung

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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I'm hoping that I can locate the person who wrote about downloading the Savvy Caregiver Handbook. I read the comment and then went on reading other things, planning to re-read it, and it got lost to me. I was looking for that book, because I had it as a download, and somehow it got deleted. I searched the entire internet a week or so ago, and even contacted the area agency on aging, but was not able to find it again. It is an excellent book, but I hardly had it long enough before I must have deleted it by mistake. Please if you are out there I would love to have that link. My husband went for testing about 8 years ago because I was noticing signs of Alzheimers. He was not diagnosed at the time, but then two years later was tested again, and was diagnosed. It was amazing to see that some person out there had the link to the book. T U. I hope that I hear back.

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@teatime2

Thank you for answering. He was diagnosed around 2011. Looking back I can see that he probably had this before that date,but since he is a stroke patient I really jus chalked the memory loss up to that.

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Good morning and I hope you have a nice 4th today, @teatime2 I know many symptoms similar to dementia can be caused by other medical issues. While my MIL's were caused by dementia, my wife's were the result of a brain bleed and cancer.

I'm not a medical professional, but we were told changes in memory, personality, etc. can happen as a damaged brain continues to try and find new pathways for the synapses to work around damaged areas. Both my wife and MIL would plateau at times and then exhibit changes and at other times the changes seemed to come along one right after another. I remember these times of change were always challenging.

I hope your husband's doctors can find the source of his pain.

Strength, Courage, & Peace

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@lizzier

I'm hoping that I can locate the person who wrote about downloading the Savvy Caregiver Handbook. I read the comment and then went on reading other things, planning to re-read it, and it got lost to me. I was looking for that book, because I had it as a download, and somehow it got deleted. I searched the entire internet a week or so ago, and even contacted the area agency on aging, but was not able to find it again. It is an excellent book, but I hardly had it long enough before I must have deleted it by mistake. Please if you are out there I would love to have that link. My husband went for testing about 8 years ago because I was noticing signs of Alzheimers. He was not diagnosed at the time, but then two years later was tested again, and was diagnosed. It was amazing to see that some person out there had the link to the book. T U. I hope that I hear back.

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@lizzier, I wrote to you in another thread, but this information bears repeating here:
The Savvy Caregiver Program is available to buy. See here: https://hcinteractive.com/savvycaregiver/

The good news is that is on sale right now for $49, which includes:
✔ The Savvy Caregiver 4-DVD Set ($99 value)
Savvy Caregiver is a nationally recognized family caregiving program to help you better understand dementia, your role as a family caregiver, and how to regain some level of control of your life while also supporting your family member. This DVD set features award-winning instructor, Judy Dolloff, and is subtitled in both English and Spanish.

✔ Downloadable the Caregiver’s Manual ($25 value)
The Savvy Caregiver “Caregiver’s Manual” provides detailed caregiving information and areas for you to take notes for every step of your personal journey.

✔ Downloadable Savvy Caregiver Worksheets ($25 value)
These useful worksheets will help you cater the Savvy Caregiver information to you and your family.

@teatime2, I'd like to add my welcome as I sit here a sip a cup of tea. Will you join me?
You may also be interested in this related discussion
- Driving, Early Dementia and Stroke https://connect.mayoclinic.org/discussion/driving-early-dementia-and-stroke/

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Colleen thanks you so much for searching that out. I spent so much time looking for it, and I couldn't find it. I really appreciate your effort. They are offering the course again through our Alz. Assoc. here, but they only provide the downloadable version, and it's free, but nothing like having the whole program. Especially since I deleted my copy by mistake. This will be so helpful. Thumbs up!

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@colleenyoung

@lizzier, I wrote to you in another thread, but this information bears repeating here:
The Savvy Caregiver Program is available to buy. See here: https://hcinteractive.com/savvycaregiver/

The good news is that is on sale right now for $49, which includes:
✔ The Savvy Caregiver 4-DVD Set ($99 value)
Savvy Caregiver is a nationally recognized family caregiving program to help you better understand dementia, your role as a family caregiver, and how to regain some level of control of your life while also supporting your family member. This DVD set features award-winning instructor, Judy Dolloff, and is subtitled in both English and Spanish.

✔ Downloadable the Caregiver’s Manual ($25 value)
The Savvy Caregiver “Caregiver’s Manual” provides detailed caregiving information and areas for you to take notes for every step of your personal journey.

✔ Downloadable Savvy Caregiver Worksheets ($25 value)
These useful worksheets will help you cater the Savvy Caregiver information to you and your family.

@teatime2, I'd like to add my welcome as I sit here a sip a cup of tea. Will you join me?
You may also be interested in this related discussion
- Driving, Early Dementia and Stroke https://connect.mayoclinic.org/discussion/driving-early-dementia-and-stroke/

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@colleenyoung I wish my dad could have had access to something like this while he cared for my mother. He toughed it out for 10 years on his own, before she passed in 1996.

Any time you can have a source for assistance and how to cope with dementia is a blessing.
Ginger

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@teatime2

Hi, I'm new here. I care for my husband who has been diagnosed with Alzheimer's. Just reading the stages I'd say he is in the late middle stage? He has alot of pain on the front right side of his head. there are times when he will be lalking or walking or eating and he just stops and gets this stare. For a little bit he can't function at all. Then he will slowly come out of it. Then he complains of " being judo chopped in the back of the neck". He's been checked for seizures and nothing found. Any one familiar with this?

Jump to this post

Hi Teatime2, I have seen these gaps/losses in focus and awareness before. I have wondered if they are TIA's, focal migraines or perhaps a focal seizure of some type. With so much going on in the brains of those we care for, all I can do is observe, protect him and document. I try to think what he was doing prior having one of these issues. Before the awareness gap, I think about what he had done just prior. I can try to make sure he is hydrating, eating well, resting, etc. It's hard to watch, for sure, but managing their safety and your caring for yourself is a daily dance in this part of our lives.

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