Testing/changes due to diagnosis of parent

notequipped · July 20

Just curious if anyone has had testing due to the diagnosis of a parent. If so, what kind of testing?

Has anyone taken any legal steps should you face the same diagnosis? What would you do differently?

I am adamant that I do not want to be cared for by family in the event that I develop Alz. (My Mom, her Mom and my mom’s paternal cousin have all had Dementia. It is unknown what type my grandmother had. My Mom and her cousin have(had) Alzheimer’s.) The best plan that I have come up with is to divorce my husband in the event of a diagnosis.

JulietteBee · July 20

My mom and two first cousins all have/had Alz. One cousin has died. My mom's blood work shows she has the APOE3/4 which is the genetic variant. My adult child and I are now painfully aware that our chances of developing it is greater than zero.

I currently do not want to be tested. If I do develop it, in light of my pre-existing, genetic, terminal disease, I honestly would want to move to a state that has assisted-dying laws on the books. I would NOT want hubby or my child to have to go through the experience we are currently going through with my mom.💔

H1235 · July 20

I think everyone should have all legal matters addressed. A will, DPOA, medical poa, and living will are so important regardless of the risk of dementia. I think any care wishes should be written down and left with this paperwork so your DPOA knows your wishes and can follow them.

harshedbuzz · July 20

I would purchase LTC insurance.

If you divorce your DH, it's likely someone other than him will likely be named your court ordered guardian. Timing would be another factor; you'd have to decide when to initiate it. If you didn't do it early on while you had the capacity, you may not be able to pull it off. Even if it could be arranged, the Alzheimer-version of you might no longer want that.

HB

notequipped · July 20

https://alzconnected.org/discussion/comment/277792#Comment_277792

While I agree they are important, I don’t believe that those things protect your family financially. I don’t want my husband to be in a position where joint funds come under that much scrutiny and need to be exhausted for my care. Maybe I need to schedule an appointment for myself with the CELA today - though I’m still far from ‘elder’ at this point.

@JulietteBee I live in a state with assisted dying laws in place. It’s not helpful due to the mental competency requirement.

notequipped · July 20

https://alzconnected.org/discussion/comment/277793#Comment_277793

I guess detecting it early is what I’ve been giving the most thought to. From what I have read, having the gene is no guarantee that you will develop Alz - LTC insurance is expensive and coverage seems like it can be spotty. Genetic testing as a method of early detection seems like it’s discouraged.

H1235 · July 20

https://alzconnected.org/discussion/comment/277794#Comment_277794

A lawyer can definitely help with financial advice as well. A trust may be in order. I agree, I wouldn’t want our life savings blown on me, but I would want to be sure there is money available so my husband can get the respite he needs or to cover mc so he is not forced to care for me at home when it’s beyond his ability. I think a lot depends on your financial situation. If you would never be able to afford mc and would need Medicaid then you would take different steps than if you have the funds to cover mc for both of you for several years. I agree that longterm care insurance might be something to consider.

JulietteBee · July 20

@notequipped, thank you for pointing that out. I guess I would need to be tested earlier rather than later, so I can relocate while said competency is still intact.

Having a Trust and all that will not protect my husband, financially. We have that already and yet, for him to be able to get help in home will require he kicks out our adult child or have our child spend down every last dime, majority of it being from my parent's estate.

You posed a very thought-provoking question which terrifies me.

notequipped · July 20

@JulietteBee It is terrifying. I’ve given this a great deal of thought. I think that in our case, divorce is the way to go to let him still be able to enjoy his golden years without effectively going broke. Super early detection is imperative though. Unfortunately, I believe that you need to remain competent at the time of the assisted death. They need to come up with a dementia clause.

JulietteBee · July 20

@notequipped, I understand that it may end up being your only option.

I remember an aunt of mine who had been married for almost 50 years at the time her husband got gravely ill. She informed the family that she had filed for a divorce. It was an absolute shock to us. As far as I understood it, after his death, it was on paper only. They continued living together and recognized they were still husband and wife in God's eyes. She had to do that as that was the only way she was able to get NY state to afford him medical aide, without bankcrupting herself.💔

terei · July 20

Another point to be made here is that there does not have to be any kind of announcement to anyone what you and your husband decide to do. Divorce and the splitting of assets can be done privately without the input of other relatives and friends.

Testing/changes due to diagnosis of parent

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