How to cope with early onset decline of my sister long distance

Christylee · June 6

Hi. I live in AZ, my sister and her family in WI. For some time she has had memory issues. She was only diagnosed 2 mths ago and is 66. Last weekend my nephew told me she is in decline, not eating, and is now in her own world. .I am going back to WI shortly. Personally I am crushed. As a nurse I know the support they need. I can be there. For myself, I’m floundering. Any advice?

Crawfsu · June 9

I’m so sorry you are going through this. I’ve been in a similar situation living a in the Northeast with a sister down south who was diagnosed at 57. I struggled with guilt of not being closer. I made as many trips as I could and always scheduled something meaningful to do together. On one trip I arranged horseback riding because that was something she loved as a young adult. The phone and/or facetime and zoom calls. Use the dementia consultants (Master’s level professionals) on the Alz help line to support you and your sister. They are great. It’s a hard journey and you take it one day at a time.

ARIL · June 10

I am so sorry. This disease is awful for everyone, but early onset is a special brand of horrible.

Other healthcare professionals on this site have talked about how different this is when the PWD is your own family rather than an unrelated patient. Give yourself grace. Even accepting this new reality is hard and takes a while. Yes, you know what support they need. And offering help will also help you. But it’s going to hurt, and being crushed is absolutely an expected and appropriate reaction.

Agree with Crawfsu that one day, one hour, one moment at a time is the only way through. Come here when you want. There are a lot of understanding people on this forum. This area gets less traffic than “I am a caregiver (general).” You are likely to get more responses posting there. (And you don’t have to be the primary hands-on caregiver to count as a “real” caregiver here.)

Iffy49 · July 27

https://alzconnected.org/discussion/76226/how-to-cope-with-early-onset-decline-of-my-sister-long-distance

You said she has family. That should be the first resource. Let her family take the lead even if you think you know what is best for her.
You also said, “I can be there” . Please be careful to protect and value yourself.

How to cope with early onset decline of my sister long distance

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