1. < Caregivers: Dementia

Husband has Essential Thrombocythemia (ET) & MCI

Posted by tresman10 @tresman10, May 14, 2020

My husband has both, some days good, some not so much. ET is managed with hydra & aspirin MCI is a learning curve for me daily. Some days it is overwhelming. Some days almost normal & this pandemic has made life challenging . Anybody???

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

tresman10 | @tresman10 | May 20, 2020
In reply to @debbraw "Hi @tresman10 - The best information I ever got was from a 6-week program called The..." + (show)
@debbraw

Hi @tresman10 - The best information I ever got was from a 6-week program called The Savvy Caregiver that our local Council on Aging provided free. The program was originally developed by a group from the University of Minnesota and it is excellent - providing advice for all the stages of dementia. It begins with the time right after diagnosis and goes through all the way to end-stage dementia. It gives the caretaker advice on how to assess risks, how to relieve stress and many many other important topics. You can get the manual at this address:
https://www.hcinteractive.com/files/pdf/SavvyCaregiverManual.pdf
It's 176 pages but its packed with down-to-earth guidance for day to day lifel. If you can't take the course, I would download the manual. In fact, I've taken the course and I still downloaded the manual for reference. Could you take a look and see if this is something you would find useful?

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Ty Ty ty...I downloaded the manual& am reading through it. So far it is spot on with me, daily life, challenges, and education. This will get me up to speed on what to do. We don't have family near us & have a few casual friends where we live in retirement community. Really I am on my own figuring this out until now. Some days I am on verge of melt down, no trigger just daily stuff catches up & am emotionally drained.. I am now encouraged to see i am on the right track & will learn from this manual how to care for both of us. I try to be strong, successful most of the time. My go to place is in the kitchen today. Couple hours of baking and all is well again.

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tresman10 | @tresman10 | May 20, 2020
In reply to @colleenyoung "@tresman10, I'm not sure if this was already mentioned, but I recommend following the HABIT blog...." + (show)
@colleenyoung

@tresman10, I'm not sure if this was already mentioned, but I recommend following the HABIT blog. It is written by the 3 Directors of the HABIT program at Mayo Clinic in AZ, FL and MN. There's a wealth of information here:

- Living with Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

How are you and hubby doing today?

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Ty for the link. Having a good day. Hubby is happy & simple to care for. I took a couple hours break for myself& did some baking. Since our apt. Is quite small i can be in my little kitchen, keep eye on him, & he has comfort knowing where I am because he can see me & chat when he wants to. Works ok

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 21, 2020
In reply to @tresman10 "Ty for the link. Having a good day. Hubby is happy & simple to care for...." + (show)
@tresman10

Ty for the link. Having a good day. Hubby is happy & simple to care for. I took a couple hours break for myself& did some baking. Since our apt. Is quite small i can be in my little kitchen, keep eye on him, & he has comfort knowing where I am because he can see me & chat when he wants to. Works ok

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I appreciate you sharing that, @tresman10. It sounds like you and your husband are making the best of your situation and doing it admirably! I like that you are doing things that you enjoy. Self-care is really important for caregivers.

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shenriq | @shenriq | May 26, 2020

I’ve had ET for many many years. I have no gene mutation, having had an extensive panel of genetic tests. My symptoms are largely fatigue and night sweats, but I’m lately noticing a new symptom: numbness in fingers on my left hand and top of my left foot, so that’s my story. Happily, my platelets have remained low enough to not compel using Hydroxyurea, only 81mg aspirin —and I’ve had no “episodes” (strokes, clots or heart issues).
You described noting about your husband’s ET issues, so I’m not clear about what support you’re seeking.
Wishing your husband and you good health.

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tresman10 | @tresman10 | Jul 3, 2021
In reply to @debbraw "Hi @tresman10 - The best information I ever got was from a 6-week program called The..." + (show)
@debbraw

Hi @tresman10 - The best information I ever got was from a 6-week program called The Savvy Caregiver that our local Council on Aging provided free. The program was originally developed by a group from the University of Minnesota and it is excellent - providing advice for all the stages of dementia. It begins with the time right after diagnosis and goes through all the way to end-stage dementia. It gives the caretaker advice on how to assess risks, how to relieve stress and many many other important topics. You can get the manual at this address:
https://www.hcinteractive.com/files/pdf/SavvyCaregiverManual.pdf
It's 176 pages but its packed with down-to-earth guidance for day to day lifel. If you can't take the course, I would download the manual. In fact, I've taken the course and I still downloaded the manual for reference. Could you take a look and see if this is something you would find useful?

Jump to this post

All i can say is WOW & TY!!!!! This manual is priceless. I downloaded it & have read now twice. I learn something each time. Is there a way to get a hard copy of this manual? I would like to write notes in it as i read. I am watching the progression&think it would help me to keep notes. Ty so much for sharing this resource. I will admit i got an emotional overwhelm reading it too. Knowing what it's ahead on this road is quite a heavy load. Count my blessings that husband is a happy&content fellow.

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2 replies
Debbra Williams, Alumna Mentor | @debbraw | Jul 4, 2021
In reply to @tresman10 "All i can say is WOW & TY!!!!! This manual is priceless. I downloaded it &..." + (show)
@tresman10

All i can say is WOW & TY!!!!! This manual is priceless. I downloaded it & have read now twice. I learn something each time. Is there a way to get a hard copy of this manual? I would like to write notes in it as i read. I am watching the progression&think it would help me to keep notes. Ty so much for sharing this resource. I will admit i got an emotional overwhelm reading it too. Knowing what it's ahead on this road is quite a heavy load. Count my blessings that husband is a happy&content fellow.

Jump to this post

@tresman10 - I totally agree about the value AND about the fact that it is scary and emotional to look too far ahead. My husband is well into moderate dementia and probably edging toward the severe stage, and it's still scary for me too think too much about what lies ahead. But that Savvy Caregiver course and manual has been one of my most valuable resources in navigating this journey. Wishing you and your husband all the best.

REPLY
1 reply
claire39 | @claire39 | Jul 4, 2021
In reply to @tresman10 "All i can say is WOW & TY!!!!! This manual is priceless. I downloaded it &..." + (show)
@tresman10

All i can say is WOW & TY!!!!! This manual is priceless. I downloaded it & have read now twice. I learn something each time. Is there a way to get a hard copy of this manual? I would like to write notes in it as i read. I am watching the progression&think it would help me to keep notes. Ty so much for sharing this resource. I will admit i got an emotional overwhelm reading it too. Knowing what it's ahead on this road is quite a heavy load. Count my blessings that husband is a happy&content fellow.

Jump to this post

Hello Tresman10.....I too have ET and would love to read that manual. How do I access it and can you buy a hard copy. I know information is sometimes scarry but I would risk it. Please let me know if you find out if you can buy it. Thanks for sharing.......Claire39

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lizzier | @lizzier | Jul 4, 2021

I looked all over the internet a few weeks ago to buy a copy of Savvy Caregiver Manuel and could not find it. it would save my copy paper and ink, but to no avail.

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tresman10 | @tresman10 | Jul 4, 2021
In reply to @debbraw "@tresman10 - I totally agree about the value AND about the fact that it is scary..." + (show)
@debbraw

@tresman10 - I totally agree about the value AND about the fact that it is scary and emotional to look too far ahead. My husband is well into moderate dementia and probably edging toward the severe stage, and it's still scary for me too think too much about what lies ahead. But that Savvy Caregiver course and manual has been one of my most valuable resources in navigating this journey. Wishing you and your husband all the best.

Jump to this post

Ty for replying. How did you obtain the manual & course?

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Debbra Williams, Alumna Mentor | @debbraw | Jul 4, 2021

@tresman10 - Our local Council on Aging offered the course a couple of years ago. It was a 6 week class that met weekly for a couple of hours one day a week. They went over all of the information and had a geriatric nurse there to answer questions. The course itself was free but there was a small charge if you wanted a hardcopy of the manual. Well worth it! As I said, this has been one the best resources I've had.

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