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 Is there somewhere a child of a caregiver can talk? 
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Joined: Sun Jul 25, 2010 10:33 am
Posts: 4
Post Is there somewhere a child of a caregiver can talk?
My Mom is the primary caregiver for my Dad, who was diagnosed with LBD mid-July, but was misdiagnosed with PD two years ago. I am getting very frustrated with a few things relating to my Mom's situation.

First, I have four siblings who all live close to her who do seemingly nothing to volunteer their services. I am a 45 minute drive away, so not too terribly far, but I have small children who are in elementary school so I can't just drop everything to go out there. The last time I tried to get any of my siblings to help my Mom out, only one responded positively and the other three got very mad. This was about a year ago even before Dad's diagnosis. I'm not sure how to get through to them or if I should just write them off.

The other thing I am frustrated with is my Mom's inability to say "no" to anyone. My aunt keeps asking her to look after her (teenaged) foster kid while she and her husband go to Palm Springs (they have a place down there) because they can't take him with them. In addition to looking after my Dad, my Mom is also looking after her 93 year old father who lives there. Now while Grandad has pretty much perfect health, he's from a generation that relied heavily on females, so she does almost everything for him. I wish my aunt would grab a clue. Like Mom doesn't have enough on her plate? Sheila has grown children of her own who could look out for him or she could call the Ministry and make arrangements for respite.

I am so afraid she is going to burn out and slip into a deep depression (she has a history) and it's going to turn into a bigger deal.

It would be nice to see a component of this forum dedicated to people such as myself who are not in constant direct contact with the LBD patient but want to support the caregiver as much as possible, even if that just means emotionally. Most of the primary subjects on here are either very specific to the disease or too generalized. This could also include long distance caregivers.

Thank you in advance!

Fri Sep 03, 2010 7:52 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Is there somewhere a child of a caregiver can talk?
Hi and welcome. If you read through the posts you'll find some about siblings, getting help from others, etc. So sorry about your situation. I certainly have my own share of issues with my only sibling - I'm finally geting the picture that because of her "communication style" we have not been getting the care for my dad that I have been so desparately seeking, and I spend a lot of time repairing relationships . I do most of the managing of the caregiving from 500 mi. away, and because we are pretty much empty nesters now, I go to my dad's every 2 - 3 weeks for 7 - 14 days. All this despite the fact that my sister lives 5 min. from my dad's house and an hour from his ALF. :x
Some of us talk privately about our situations via PM or email. I'll send you a PM with my email address if you want to "talk". Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Sep 03, 2010 8:09 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Is there somewhere a child of a caregiver can talk?
There are certainly some posts here by family members who are not the primary caregivers. This category is often made up of (a) adult children who want to support one parent caring for the other parent, and (b) those who want to support their spouse who has a parent caring for the other parent [so the mother-in-law or father-in-law has LBD].

The only way I can think of to find such posts is to do a search for those in category (b) by searching for the word "in-law" in past posts.

I think there are more posts of those in these two categories on the LBDcaregivers Yahoo!Group. In particular, I believe "planomom" has a mother with LBD, and the daughter tries to support the father.

I was my father's primary caregiver but I lived in a different state than he did. One publication I found useful early on was this one:

So Far Away: Twenty Questions for Long-Distance Caregivers
National Institute on Aging ... aregiving/ (download for free online)

I'm sure at least one of the 20 questions in that publication addresses how an adult child can support the caregiver parent.

Mon Sep 20, 2010 4:00 pm

Joined: Mon Sep 27, 2010 10:35 pm
Posts: 3
Post Re: Is there somewhere a child of a caregiver can talk?
I'm not the original poster but that article is exactly what I've been looking for. My dad's current wife will be his primary caregiver and its just not possible visit often but I do want to help when and where I can. Thanks for the link!

Thu Oct 07, 2010 12:56 am
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