Daughter with early onset

GHJ

Are there no others in this quiet sorrow? I am a retired nurse with long dementia care experience. It's my 58 year old daughter in this instance, and her sister and I are overseeing her care. We are not fitting any present category but wish there was more info addressing this topic, parents caring for child with dementia. A support group for this unique situation is needed, even tho general Alzheimer's posts are certainly helpful. If there are even a few members, shared experiences are comforting and reassuring for those who live it also. Thanks, Guys.

Sue

M1

Welcome to the forum, I hope you will find it useful and helpful regardless. There are not many in your unique situation, but I am sure you are not the only one. There was a frequent poster on the old forum pages named Cobalt who was caring for a son with intellectual disabilities and early onset dementia. I have not seen posts from her in a while; I know she lived out west (Arizona i think) and she and her son had been featured in some newpaper articles out there, for which she posted some links at one point.

Many of us who have been here a while are struggling with the new format (just introduced last week) but try not to let that throw you., Any and all who are dealing with this difficult disease are welcome. My affected loved one is my partner, I can only imagine how difficult it would be to see it happen to a child. Good luck.

Mint

Sue welcome to the forum. Very sorry for the challenge you find yourself in. Though it isn’t as common for parents to be caring for child here, there are others here such as Jude who have gone through this. Also some people here are dealing with partners of the same age group as your daughter. Also see others taking care of a sibling on here

There are several retired health care workers of various sorts on here.

think you will still find the forum helpful. Also you will be a nice resource for others who might come here in your same situation.

take care

harshedbuzz

Hi and welcome.

Cobalt was the only parent-caregiver I can recall on the boards. There have been a few sibling-caregivers whose loved one has early on-set. Gothic Gremlin is one who posted in the last few days. When I first joined there another sister who was primary care-giver to her sister who had Alzheimer's and Down Syndrome; her situation was different as she'd been the legal guardian/caregiver for years before the onset of dementia.

HB

CatsWithHandsAreTrouble

Hello, sorry you've found yourself in a challenging place in life, I do hope you can find some solace here.

I'm an adult child caring for my mom so I don't have much to say on your unique situation, however I am friends with an older lady at my church who was the longtime caregiver of her son with multiple disabilities and early onset dementia as well. I can try asking her some things for you if you want, though I cannot guarantee promptness as she's not been coming to service as frequently since the passing of her son mid last year.

GHJ

Thank you, M1, Sayra and HB! I feel hugged! I will share more as time goes by, and so hope I can be of use here also. God bless you..

Mint

HB her name is Jude, just did a search and found her. Mainly posts on Loritas front porch and not very often. She lived in a different state but believe at least once she went there to help some if I remember right.

LicketyGlitz

GHJ, I did some poking around the internets and found a couple of resources that may be helpful to you and your family...

Scroll down to the bottom of the page for a young-onset caregivers support group. The organization is based in Chicago, but it looks like they do their support groups on Zoom so I'd check in with the contact person and see if this would be helpful for you.

https://www.brain.northwestern.edu/care-and-support/support-groups.html Chicago

I just met the co-founder of this group! If you're in the vicinity of Calgary, AB, check it out! And if not, I emailed her and asked if she knew of any similar organization in the states, or any online support groups for young-onset caregivers. I'll hope on the forum as soon as I hear back from her and let you know.

https://youquest.ca/ Calgary, AB

GothicGremlin

Hi there Sue -

I'm not in the same situation as you, but my younger sister, Peggy, was diagnosed with early-onset at roughly the same age as your daughter.

One of the best books I've read about what it's like to have early-onset is Wendy Mitchell's book, Somebody I Used To Know. I read this book to Peggy (she lost the ability to read fairly early on). When I told her the title of the book, she said "this is exactly how it feels." I asked her what she meant, and she said that she often felt like her "old" self, was someone she used to know, and that she is now a different person - which is not something I would have ever picked up on.

The book was useful to help me be able to step into her shoes and see the world as she sees it. The book isn't depressing at all, and it's not long. I highly recommend it.

Peggy was diagnosed almost five years ago, and she's been in memory care now for about a year and a half. It's been a rough five years, filled with trial and error.

I'm so sorry about your daughter. 58 is young. If there's anything I can do to help, please let me know.

LicketyGlitz

Oh, Gothic! Good recommendation on the Wendy Mitchell book!

GHJ, I heard back from the gal who founded YouQuest in Canada. She did not know of any similar organizations in the U.S., and said that England and Australia had similar services for young-onset. I suspect you are not in those countries.

If you or either of your daughters are on TikTok, I recommend checking out The Kathy Project. It's two sisters, Kathy is living with Alzheimer's (I think that's the right dementia?), and her sister Jean is documenting how Kathy and her family are making it through the journey. Their mother is often featured in the videos too, as she's become somewhat of a target for Kathy when she's having a really bad day. You might find some similarities with the journey your family is on. Here's an article about them: https://www.douglasmagazine.com/the-kathy-projects-jean-collins-to-speak-at-breakfast-to-remember/

GHJ

Hi All,

Thank you so much, the responses are gratefully received. We are not so different after all; my daughter, J, has been in facility care for years and spends time with her Dad, sister,N, and me her mama each week. She does have a mental illness which was triggered by years of domestic abuse and eventually became unable to live in a family home for her own safety and security. Now, tho, for a while my many years of dementia care "Spidey Sense" has tipped me off that this was more than her illness progressing. This has recently become a seriously concerning issue tho as of yet no diagnosis..waiting has been interminable to see an appropriate neuro. In a couple more weeks now. I know how you all have such challenging lives, thank you again for sharing your thoughts with me, I have checked out your recommendations and bought 'Somebody I Used To Know' - I so appreciate the tip. I have a pretty good library but caring for J is different. All counsel is welcome, and I do hope to become a help for you as well. God bless!!

GHJ

PS: Sorry, meant to say we live in the deep south but really appreciate the carer links. It's not possible to do in person meetings at this time anyway, but the AlzConnected site is perfect for our needs. Have a blessed week, my dear friends :).