CLL caregiver; spouse with bvFTD (Frontotemporal Dementia)

Posted by whereisit54 @whereisit54, May 16 3:06pm

He thinks he's fine. We're in our early 70s. The bvFTD runs in his family. I waited my whole life and married at age 66. Almost immediately he started getting mean to me. In fact he was already suffering from it when we met. We were to sell both houses & get a place together. Mine got sold. His needed renovation in 1999 its dangerous with broken glass in the windows. We have my $ to move. Mr Demented says no. He's too functional. I decided no treatment for my CLL because I cannot do this.

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Lori, Volunteer Mentor | @loribmt | May 17 12:17pm

Hello @whereisit54. You’re sharing such a compelling story and my heart goes out to you. My daughter’s former father-in-law also suffers from bvFTD, (Behavioral Variant Frontotemporal Dementia). It’s a horrible form of dementia, not that there’s a good one. But the normal sweet, attentive and loving partner turns into a complete stranger. The body is the same but their emotions, their social behavior, the withdrawal and the abusive, Dr Jekyll/Mr Hyde behavior is sad and frightening. I’m so very sorry that your husband has this and you’re now in the positive of being caregiver to someone who feels like an ungrateful stranger.
I wanted to address this first before I talk about your CLL. From what I’ve learned, don’t wait until your husband decides ‘he’s ready’ to move. Now is the time! You may have to force the issue. BvFTD patients are unaware that they are slipping. You may need to get a lawyer to help you navigate some issues ahead. FTD patients can deteriorate rapidly and may require long term care in an assisted living facility.
You may even consider a divorce only to get control of your finances so that your assets are split. You can still be his caregiver. This is strictly for financial reasons. If this FTD runs in his family, what has happened to those members? Did they have long term care? Do you have any family members or friends who can help give you advice with this? How about your husband’s doctor?

It might be helpful for you to talk with other people who are caring for loved ones with FTD. Right here in Connect there are several discussions: Here is a quick search I did with the results:
Connect discussions on FTD. https://connect.mayoclinic.org/search/
Also, a little article on bvFTD from UCSF:
https://memory.ucsf.edu/dementia/ftd/behavioral-variant-frontotemporal-dementia
Now, let’s talk CLL. This can be a very slowly developing form of a chronic leukemia. Sometimes people may go years without any treatment. If needed the treatments can be highly successful in allowing for a full and healthy life. You are only in your early 70s and yes, you’ve been handed a plate full of stress and issues with your husband. But that shouldn’t take away your right and will to enjoy your life. Things feel overwhelming right now with the situation you’re in. But there can still be a great deal of joy and living ahead for you. How long ago were you diagnosed with CLL? Do you know what stage you’re in? Has your doctor recommended treatment?

Was this a newer diagnosis for you?

whereisit54 | @whereisit54 | May 17 5:11pm

Husband's Dr office said wait for an event and then call the police. No help there. I seemed to have had blood count issues for 4 years. I found this online site that goes with the lab & I searched what was wrong. I asked my general Dr to order I think 2 tests fish & something else. So officially diagnosed March.
There's so much more I'm just too tired to write.

Lori, Volunteer Mentor | @loribmt | May 18 8:34am

In reply to @whereisit54 "Husband's Dr office said wait for an event and then call the police. No help there...." + (show)

@whereisit54 This has to be an incredibly frustrating, exhausting, frightening and overwhelming experience for you right now. This is not what you signed up for when getting married a few years ago. I’m so sorry your husband’s mental health has deteriorated so much. The belligerence and meanness are difficult to cope with. You have my empathy. I’ve seen this similar treatment with the extended family member I mentioned.
If you ever feel like talking about it, I’m here for you anytime. Do you have other family members that can help offer some moral support for you?

whereisit54 | @whereisit54 | May 18 10:02am

No. He has a sister but this runs in their family. She absolutely refuses to discuss this with me. So much so it's possible she has it too.

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