Any spouse caregivers of Alz patient with teens in the house?

DWofGADH

This is my first post. My DH was diagnosed with Alzheimer's in February with APOE3/APOE4 variant. He has had two Kisluna infusions. I am 56 and he is 70, and we are both still working, though he will not be as actively working now. We have a 10th grader at home. She knows about the diagnosis. I am so worried about her and what the future will look like for her. I'm sure she's a little embarrassed anyway about her "older" parents. It also makes me realize I must do everything possible to stick around for her. How have any spouse caregivers with teens handled everything?

sandwichone123

My kids were a little older at diagnosis, and I hope you find someone with teens. I just want to say make sure to protect your kid. Sometimes someone with dementia will choose someone to be angry and mean to, and it's often a kid. I hope that doesn't happen, but please be alert. Teens need a safe place to come home to, and optimally a safe place to meet with their friends.

Dementia is expensive, so consider helping her look for scholarships when the time comes.

debbymc4

Yes! I am 52 and my partner is 72. We have a 10th grader. I thought I was a unicorn!

DWofGADH

https://alzconnected.org/discussion/comment/242204#Comment_242204

I guess we are both unicorns! Glad to know. How is your partner doing? How is your 10th grader?

mbald

I’m 57 and my DH is 57….we have one teenager at home and two in college. My DH was diagnosed in January with EOD and had his first infusion 3 weeks ago. I feel he’s declined since the diagnosis. Our teenager is aware of diagnosis….hard not to be given how many time he asks the same questions. I feel bad for her as she has one more year before she goes to college, it isn’t fair.

PlentyQuiet

DH was diagnosed as our eldest was just going to college and our younger was in 11th grade. This was 4 years ago.

They are doing okay. I'm sad that their dad will not be there for the large milestones. They are too, but they see him where he is (stage 6) and we are all together in hoping something takes him quickly so we can have more regular memories and fewer EOAD memories.

The money worry is real. I was informed by our Elder Law attorney that the 5 year lookback would see helping to pay for college as a gift that would be clawed back. Also the spousal impoverishment rules are not designed to support a spouse in their 50s with maybe another 30 years to live and who had to leave the workforce in peak earning years to be an unpaid caregiver.

Get good legal and financial advice and don't hide symptoms from the kids. They need to know where things stand. My eldest chose to stay at college 3 hours away after a discussion at diagnosis (DH was only MCI at that time) and he was able to clearly say that as a parent the thing that would give him the most happiness and comfort was for them to live their life to the best of their abilities. It relieved so much guilt.

Eldest graduates this friday with an Ed degree and I would not have changed a thing for them. They are involved in his care and doing well. My overall guiding principle was that EOAD will take down DH but I was determined that it would not destroy the family as a whole.

beachbum

I am 54 and my DH 58, he was officially diagnosed last year with EOAD and both kids are in college. However, we were later getting diagnosis and the symptoms had been going on for at least 4 -5 years when my kids were high school/ middle school. I was a married single parent. I was in charge of all travel for sports, college visits, , everything related to raising teens. They knew something was wrong but I focused on them and making sure they had a normal life. I found myself covering for him more and more until we could deny no more. When we got official diagnosis I was completely honest with the boys . They know their time is limited. EO is horrible and so many more obstacles, I am thankful I have a good job and carry the benefits but I have to keep myself healthy and in shape because I not only have DH but my children. You are not alone

JoseyWales

Here's another unicorn. DH's symptoms first started when DS was about 8 or 9. FINALLY a doctor agreed with me that it was dementia and DH quit work when DS was in 9th grade.

I gave DS a car as soon as he could drive, so he could go to things without needing me to take him. I took DH to as many school activities as I could, which became harder as DH declined. DH was able to be at the senior night for sports and music - but walking DH through those things was so hard because he had to be led like a child. DS never seemed embarrassed. During DS's senior year there were tons of activities we ended up missing because DH would refuse to go last minute. DH made it to HS graduation but complained the whole time and had no clue why we were there. BUT he was there.

Dementia and kids has its own horrors. It starts out being something you think you can handle…. until the person with dementia no longer recognizes the child, or becomes upset and yells at the child. DS put up with a lot, and saying "he has dementia" just isn't good enough. It is still their parent yelling at them.

beachbum

My kids also have never been embarrassed, just kinda accept and go on, but they do get frustrated when try to engage in a conversation and it is one sided. Most the time his attention more focused on me ( which drives me crazy) and kinda ignores them. My youngest often asks how long before his dad doesn’t recognize him, they were very close and he is taking it the hardest. I wish I had an answer for him but who knows, I would guess he is late stage 4.

DWofGADH

Thanks very much for all the comments. It helps to know I am not alone.

debbymc4

https://alzconnected.org/discussion/comment/242246#Comment_242246

Things are very difficult. I'm overwhelmed by being a single parent, caregiver, and main income source. My stress level impacts my child. I think we've all been in levels of denial for a long time, and we are coming to terms with the reality of what is happening.

debbymc4

We did the car right away, too. I hurts me when they want to stay away even though I understand it completely. I want to stay away, too.

dunmunn25

I am 69 my DH is 73. He’s in late moderate cognitive. We have our 16 y/o granddaughter living with us as well as our son. When I’ve talked to her she says she understands what’s going on with grandpa. My DH talks about the woman living next door. Of course that’s gd. In the room next door. He seems to be more interested in what’s going on in her room, then she is. I imagine it will be harder as time goes on but for now it’s ok. If he gets focused on her, when he doesn’t recognize her, I just distract him.

Traveler18

I am 61 and DH is 66 in stage 6 FTD (early onset and about 9 years in) and moved to MC in March of this year. We have a son who is now 18 years old. I would say let your daughter lead the way on how she wants things to go. Our son (not the most caring and empathetic person as a teenage boy), has been a huge help to me. I took the hard yards, but he helped to watch out for dad as well. We had to do an Eagle Scout project last year where I had Dad at my side and impatient the entire time. Our son just let things roll. I had to pull a couple of the older kids aside (who worked closely with us) and mention the illness so that they had context for the tone of the conversations that were happening. My MIL had Alzheimer's so the family has some exposure already and some PTSD that is happening as we relive this experience. 😬 When we moved my DH to MC, our son was mostly relieved as he didn't have to worry about the weird things that Dad was up to. He knew it was the disease, but that didn't repair/replace damaged and lost items, worries about wandering, or safety. DH made the Eagle Scout ceremony in February, but was pretty disoriented through a lot of it. We are coming to terms that he will miss HS graduation. This is the start of the next new normal.