Husband has Essential Thrombocythemia (ET) & MCI

Posted by tresman10 @tresman10, May 14 1:28pm

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???

Hello @tresman10 and welcome to Mayo Connect,

It sounds as if you and your husband have a lot to deal with right now. I'm glad that you found Mayo Connect. While we are not medical professionals, we can offer support and encouragement, which we all need when we are dealing with chronic health problems for ourselves or for family members. As you mentioned ET, I did find a discussion on that topic. Here is the link, https://connect.mayoclinic.org/discussion/et_essential-thrombocytemia-fainting/. I would like to invite @shenriq and @lisadej1 to join in this conversation with you.

Regarding MCI, I would like to invite @debbraw. Debra's husband also has MCI and I'm sure she would be glad to offer you some suggestions. Mayo Connect also has a Caregivers' Discussion group with some very supportive people. Scott, @IndianaScott is the mentor of that group and I'm sure he would welcome you to that group as well. Here is the link to those caregiver discussions, https://connect.mayoclinic.org/group/caregivers/

Could you share with us what kind of help or suggestions you are looking for?

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Hi @tresman10 Welcome to Mayo Connect. I am so sorry to hear about your husband’s diagnosis. I know from experience how unsettling the news about MCI can be and how badly it hurts to watch the love of your life face a series of heart-wrenching losses.

My husband was diagnosed in 2015 with Mild Cognitive Impairment. At this point it has progressed substantially, but I can share with you three things that have brought me a huge amount of comfort.

First, Mayo has a program called HABIT (Healthy Actions to Benefit Independence and Thinking). It’s a two week program that helps the person diagnosed and the partner learn how to deal with the “new normal.” I can’t even tell you how valuable this program was to us as a couple and to our extended family. Here’s a link so you can watch a video about the program.
https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program
If there is any way you can get involved with HABIT, I highly recommend it.

Second, I joined a Caregivers Support Group at our local Council on Aging. With the virus rampant now, they even offer support services on line. It’s just a godsend to be able to talk to others in the same boat and know how they are handling it.

Third, I found an understanding, compassionate therapist for ME. It is such a relief to have someone looking out for me while I am caring for my husband.
The HABIT program, my support group and my therapist have brought me tremendous peace of mind. Through them, I have learned that you CANNOT do this alone. Could you check into the HABIT program and see if it’s a fit for you? Also, do you think it could work for you to look for a support group and seek out a therapist/counselor for yourself?

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Hello Tresman10…….my name is Claire and I have jak2, ET and MPN. I have been on Hydrea for two years and my blood Dr. Tells me that I am doing very well inspite of the fatigue. Good luck to you and your husband with this journey

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Ty for of your input. Habit sounds great,but travelling its no longer an option. Discovered this the hard way. But I am learning allot from the many posts & have implemented a couple tools mentioned. Successful& useful. I am eager to learn from these testimonials. Simple item of daily calendar to track days&make notes. Also a wrist watch that shows time,date&day of week in large numbers has been very helpful. Now knowing I am not alone&have this forum is quite a relief. So many Dr thought i was just a nut case, or overbearing spouse who was just making up stories. Geez! So many test with little results. But platelet Dr confirmed MIC & move forward. I informed d r at appts that info hubby provides cannot be counted upon as true or accurate. I know this now too. The answer to a question can change multiple times in 5 min. I feel relief having this forum to discuss it. Ty!

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@tresman10 – I totally understand the issues about getting connected with HABIT. You mention the wrist watch and that's a good idea. Also, a bunch of people in my HABIT Alumni group have bought the dementia clock. It shows the day, time, day of week, etc. There are a number of them on the market and I'm not recommending one or another. I'm just going to give you a link so you can see what I'm talking about.
https://www.amazon.com/dp/B078KDDY74?tag=ecservice-20&linkCode=ogi&th=1&psc=1
I'm going to buy one for my husband for Father's Day. Does this sound like something that would be beneficial in your house?

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@tresman10

Ty for of your input. Habit sounds great,but travelling its no longer an option. Discovered this the hard way. But I am learning allot from the many posts & have implemented a couple tools mentioned. Successful& useful. I am eager to learn from these testimonials. Simple item of daily calendar to track days&make notes. Also a wrist watch that shows time,date&day of week in large numbers has been very helpful. Now knowing I am not alone&have this forum is quite a relief. So many Dr thought i was just a nut case, or overbearing spouse who was just making up stories. Geez! So many test with little results. But platelet Dr confirmed MIC & move forward. I informed d r at appts that info hubby provides cannot be counted upon as true or accurate. I know this now too. The answer to a question can change multiple times in 5 min. I feel relief having this forum to discuss it. Ty!

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@tresman10 I understand somewhat of what you mean by your husband being an unreliable informant. My mom was like that as well. I had to prepare doctors, attorneys, etc. for some of the misinformation, she would provide and let them know what was the truth. My mom always seemed reliable to professionals but really was not so at all.

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@debbraw

@tresman10 – I totally understand the issues about getting connected with HABIT. You mention the wrist watch and that's a good idea. Also, a bunch of people in my HABIT Alumni group have bought the dementia clock. It shows the day, time, day of week, etc. There are a number of them on the market and I'm not recommending one or another. I'm just going to give you a link so you can see what I'm talking about.
https://www.amazon.com/dp/B078KDDY74?tag=ecservice-20&linkCode=ogi&th=1&psc=1
I'm going to buy one for my husband for Father's Day. Does this sound like something that would be beneficial in your house?

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Ty!! Haven't heard of this, will check it out. Very helpful Indeed

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@debbraw

@tresman10 – I totally understand the issues about getting connected with HABIT. You mention the wrist watch and that's a good idea. Also, a bunch of people in my HABIT Alumni group have bought the dementia clock. It shows the day, time, day of week, etc. There are a number of them on the market and I'm not recommending one or another. I'm just going to give you a link so you can see what I'm talking about.
https://www.amazon.com/dp/B078KDDY74?tag=ecservice-20&linkCode=ogi&th=1&psc=1
I'm going to buy one for my husband for Father's Day. Does this sound like something that would be beneficial in your house?

Jump to this post

Please share any more tips to ease daily life & caregiving

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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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@tresman10

Please share any more tips to ease daily life & caregiving

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@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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@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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@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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@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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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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