My DH has an inherited form of younger-onset Alzheimer’s and our kids are now in their late twenties.

It is going to be a defining life experience for your son, no matter how much or little he is involved, and you will need to learn everything you can about the disease of dementia so that you can help him, even if you have no direct contact with his father.

Yesterday I watched Emma Willis’s interview with Oprah and got some additional perspectives and tips. I try to learn a little bit at a time so that I can cope better, but also so I can help our kids to navigate this as well. Our kids have no peers/friends who have a parent with dementia. It is isolating and it feels like this disease landed like a meteor in their lives. They do not live close enough to be involved in day to day care, but their dad is not his best self, nor his old self, and it impacts them.

The brain changes that lead to Alzheimer’s (accumulation of amyloid and tau in the brain) begin years/decades ahead of the clinical symptom of memory loss according to his neurologist.

Educate yourself about behavioral changes in dementia. It can be subtle. But irritability, having no filter, abandoning relationships …. All of these can be symptoms of forms of dementia if that is indeed what your son’s father has. The patient has changes in their brain and can lose the ability to be compassionate, and appropriate, and to connect with others. It is progressive so it will not get better. Educate yourself so that you can educate your son and others in time as well. That is a gift that you can give to this situation.

There are resources at a nonprofit called Lorenzo’s House for the families of people with younger-onset dementia. Check out their website. They have many offerings for the various age groups. I attend a group for the female caregivers of men with younger onset dementia, but there are offerings for the 18-24 year old group which your son may find helpful sometime. These are young people who have lived, or are still living, the experience of having a parent with dementia. I also watched a video of a panel of young adults talking about their experience. That was helpful, as many of them had advice for the other, healthy, parent on what would have been helpful to them.

Both you and your son will be impacted if the dad has younger onset dementia. You both may already have been impacted. It is a progressive and terminal diagnosis. And yes, in the case of my DH, it is inherited. That fact in itself adds a whole other factor for the offspring to deal with.

It’s a lot. Learn what you can so you can be there for your son. You will one day be in declining health yourself when you are old. Model the behavior and perspective and equanimity that you would want to see.

You’ve posted before. They have no obligation, just like no obligation to care for you either.

Anonymous wrote:

Anonymous wrote:You don't have to care for your ex. But you do have to support your child in living with this and maybe ultimately becoming a caregiver at a young age. So be flexible, be understanding, be emotionally supportive. Your child is going to go through something HARD that would have been your job but you chose to opt out.

OP here and I didn’t choose to opt out. Sadly, exDH did. I never would have wanted this to be DC’s job and put up with a lot in the hopes of making sure they would not be in the situation they are in.

I would hire a caregiver for my ex, to shelter my child.

OP, I suggest you try to save money. Not to care for your DH but to assist your DC in doing so. There are going to be emergencies and your son will need flights and hotels on short notice.

If you needed a reason to look after your own health, this is it.

Anonymous wrote:Try to be sensitive to your DC's struggles. If your DC spent winter break calling all the ERs and shelters and police stations trying to find his missing father, don't be like "Well, I had such a fun time in Italy with my new boyfriend!!!!" Understand that this is going to potentially be really, really hard. Like having to go identify a body hard.

ExDH and I spent our fair share of time calling hospitals and police back in the day for my FIL. That’s why I’m terrified for DC. ExDH always said it would never happen to him and he would end his life first before dementia was a problem for him; obviously that is an extreme reaction but I think it demonstrates how underprepared he is for what could be coming.

Anonymous wrote:You don't have to care for your ex. But you do have to support your child in living with this and maybe ultimately becoming a caregiver at a young age. So be flexible, be understanding, be emotionally supportive. Your child is going to go through something HARD that would have been your job but you chose to opt out.

OP here and I didn’t choose to opt out. Sadly, exDH did. I never would have wanted this to be DC’s job and put up with a lot in the hopes of making sure they would not be in the situation they are in.

Anonymous wrote:Yes,
He is their father.
Do you want to be taken care of if you were in the same situation by your children?

This.

And DC is going to wonder if they inherited those genes.