Spouse's Recent Diagnosis of Fronto-Temporal Dementia

Posted by snowbloom @snowbloom, Mar 28, 2022

For the past few years my children and I have noticed changes in my husband's cognitive abilities. (My husband has been a licensed clinical professional counselor and minister for 40 years as well as taught psychology at the college level.) After a couple years of trying to get referrals we finally got a neuro-psych eval last November. My husband scored in the 3rd percentile for short term memory! He also has aphasia and spatial/coordination issues. So, after that, we got referred to a neurologist who, after a thorough assessment, diagnosed "moderate to severe fronto-temporal dementia of unspecified type." He has ordered a PET scan and referred my husband to a geriatric psychiatrist who runs a "Mood and Memory Clinic" in our area. Unfortunately, they are scheduling a year out! My husband also has severe sleep apnea, Type II Diabetes, and depression. We have four very supportive but busy children, and three of them live several hours away from us. I am feeling really overwhelmed and sad about all these changes. I have made an appointment for counseling for myself and am hoping the counselor can help me process my emotions going forward. I have no idea how to navigate these unfamiliar waters and would be so thankful for any help and support from others in similar situations.

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

Welcome to Mayo Clinic Connect @snowbloom . I’m so glad that you found us. You have a heavy burden but i hope you’ll find some help and tips from other members. I’m sure that @IndianaScott has quite a lot of advice that will help you. While we wait for other members to join this conversation, here is a link to a blog site:
https://connect.mayoclinic.org/blog/dementia-hub/
Have you found any caregiver groups in your area?

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Hello @snowbloom I echo @becsbuddy welcome to Connect. I'm Scott and I was my wife's caregiver and my MIL was also diagnosed with frontotemporal dementia. It is a challenging diagnosis for sure!

I'm sorry to read of the myriad of other health challenges your husband is struggling with. As a fellow caregiver, I can certainly understand your feeling of being overwhelmed by this all. His aphasia must make this all especially difficult for you to have to guess what he needs.

When does your husband get his PET Scan and will his regular doctor interpret it for you or do you also have to wait the year for the geriatric psychologist? Has your husband's doctor been of any help with directing you to local support options such as a local Alzheimer's Association support group or given you specific suggestions for how to help you manage all your husband's needs? Does he use a CPAP for his apnea?

Strength, Courage, & Peace

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@IndianaScott

Hello @snowbloom I echo @becsbuddy welcome to Connect. I'm Scott and I was my wife's caregiver and my MIL was also diagnosed with frontotemporal dementia. It is a challenging diagnosis for sure!

I'm sorry to read of the myriad of other health challenges your husband is struggling with. As a fellow caregiver, I can certainly understand your feeling of being overwhelmed by this all. His aphasia must make this all especially difficult for you to have to guess what he needs.

When does your husband get his PET Scan and will his regular doctor interpret it for you or do you also have to wait the year for the geriatric psychologist? Has your husband's doctor been of any help with directing you to local support options such as a local Alzheimer's Association support group or given you specific suggestions for how to help you manage all your husband's needs? Does he use a CPAP for his apnea?

Strength, Courage, & Peace

Jump to this post

Thank you for all your advice and information. Right now, I am drowning
with all the issues with his Dementia and now his heart failure. His
neurologist did send me lots of info for support groups and right now I am
overwhelmed with everything so I need to get my bearings and get myself
ready to go forward. For me to do this, I need to get organized and set up
files for each category: Dementia and Heart Failure. Then spend some quiet
time with meditation and prayers. I don’t have a lot of time so I need to
start right away. I don’t have much time to devote to any support groups
right now. Just seeing the emails supporting me is all I can do and hope
you understand.
You mentioned a PET scan and a geriatric psychologist? I haven’t heard
about either one. Are these the tests and counseling he needs to have?

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@janet7

Thank you for all your advice and information. Right now, I am drowning
with all the issues with his Dementia and now his heart failure. His
neurologist did send me lots of info for support groups and right now I am
overwhelmed with everything so I need to get my bearings and get myself
ready to go forward. For me to do this, I need to get organized and set up
files for each category: Dementia and Heart Failure. Then spend some quiet
time with meditation and prayers. I don’t have a lot of time so I need to
start right away. I don’t have much time to devote to any support groups
right now. Just seeing the emails supporting me is all I can do and hope
you understand.
You mentioned a PET scan and a geriatric psychologist? I haven’t heard
about either one. Are these the tests and counseling he needs to have?

Jump to this post

Hi, @janet7 YEP! Caregiving certainly is overwhelming! I always felt like I was being forced to juggle ten flaming swords all at the same time — while I have never been able to juggle at all!

I'll have to defer to @snowbloom regarding the PET scan and geriatric psychiatrist since she mentioned them in her post. In my wife's case she only did MRIs and had only her primary care doc and her neuro-oncologist doc as her long-term team. Along the line she did have several specialists, but they came and went as needed. Then added a whole additional layer once she was in home hospice..

Strength, Courage, & Peace

REPLY
@IndianaScott

Hello @snowbloom I echo @becsbuddy welcome to Connect. I'm Scott and I was my wife's caregiver and my MIL was also diagnosed with frontotemporal dementia. It is a challenging diagnosis for sure!

I'm sorry to read of the myriad of other health challenges your husband is struggling with. As a fellow caregiver, I can certainly understand your feeling of being overwhelmed by this all. His aphasia must make this all especially difficult for you to have to guess what he needs.

When does your husband get his PET Scan and will his regular doctor interpret it for you or do you also have to wait the year for the geriatric psychologist? Has your husband's doctor been of any help with directing you to local support options such as a local Alzheimer's Association support group or given you specific suggestions for how to help you manage all your husband's needs? Does he use a CPAP for his apnea?

Strength, Courage, & Peace

Jump to this post

Hello. Thank you so much for your response. We live in a very rural area and programs and services are limited and mostly require driving a distance. I am just starting and slowly learning how to advocate for my husband. Up to now he has resisted my involvement in his healthcare. I just started going to appointments with him. I also have started managing his medications for him (filling a weekly medication dispenser). This was necessary because he had started getting confused about when he had taken his meds and a couple times he took a double dose! I keep all his meds in a lock box now. As far as the PET scan/ psychiatrist: we got a letter from the Mood and Memory clinic saying they received our referral and unfortunately have a very long wait list. They are scheduling a year out. They said they would call us when an appointment was available. I asked to be put on a short-call or cancellation list which they were happy to do. Fingers crossed there. My husband does have a CPAP but he doesn't tolerate it. He recently had another sleep study because we thought he might be able to get an "Inspire" device which is like a pacemaker implant for breathing. But my husband's apnea is not just obstructive, but also central nervous system-related, so he is not a candidate for that. He may need supplemental oxygen at night. His O2 saturation becomes dangerously low about 30 times a night! Who knows how that is affecting brain function As far as his diabetes— that has become a big challenge because he has become very impulsive about eating. It just feels like a lot to deal with. Everything takes time.

REPLY
@snowbloom

Hello. Thank you so much for your response. We live in a very rural area and programs and services are limited and mostly require driving a distance. I am just starting and slowly learning how to advocate for my husband. Up to now he has resisted my involvement in his healthcare. I just started going to appointments with him. I also have started managing his medications for him (filling a weekly medication dispenser). This was necessary because he had started getting confused about when he had taken his meds and a couple times he took a double dose! I keep all his meds in a lock box now. As far as the PET scan/ psychiatrist: we got a letter from the Mood and Memory clinic saying they received our referral and unfortunately have a very long wait list. They are scheduling a year out. They said they would call us when an appointment was available. I asked to be put on a short-call or cancellation list which they were happy to do. Fingers crossed there. My husband does have a CPAP but he doesn't tolerate it. He recently had another sleep study because we thought he might be able to get an "Inspire" device which is like a pacemaker implant for breathing. But my husband's apnea is not just obstructive, but also central nervous system-related, so he is not a candidate for that. He may need supplemental oxygen at night. His O2 saturation becomes dangerously low about 30 times a night! Who knows how that is affecting brain function As far as his diabetes— that has become a big challenge because he has become very impulsive about eating. It just feels like a lot to deal with. Everything takes time.

Jump to this post

Hi @snowbloom It IS a lot to have to deal with! My wife used oxygen nights and we had the machine in our house for years. First, it was a tank system, then we kept that as an emergency backup, and went to a much quieter, more mobile, concentrator. It helped her immensely at night and while she didn't like the nasal prongs, she became used to having them just under her nostrils and that did the trick to keep her oxygen level higher.

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I think my husband should be on oxygen while waiting for results of a heart monitor recording his heart beats. Depending on results, he may get a pacemaker. We don’t know how long it will take to get the results and he is having problems breathing. Two doctors have seen him since his hospital visit and neither one suggests oxygen. He wants the do more, but runs out of breath when he tries, so all he can do is sit in a chair. Can someone relate?

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@snowbloom @janet7 and others, I want to tell you about 2 expert blogs here on Mayo Clinic Connect that may interest you.
– Dementia Hub https://connect.mayoclinic.org/blog/dementia-hub/
Be sure to also check their Caregiver Resources (https://connect.mayoclinic.org/blog/dementia-hub/tab/caregiver-resources/) which list online support groups that you can join on Zoom

– Living with MCI (mild cognitive impairment) https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/
While I realize your partners do not have MCI, the blog post in this blog offer helpful information for all forms of dementia.

REPLY

First, has his neurologist ordered a Cpap for your husband? If not, have your neurologist set up a sleep test for him. This test will determine the type of sleep apnea he has and then his doctor can order a Cpap or Bipap. It is dangerous to have sleep apnea because the heart can stop beating and could lead to death.
He will feel so much better when he starts using one of these machines because he will be getting the sleep he needs.

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