We asked our community members what the best source of caregiver support they’ve found is. While we could all use more support, here’s what’s helpful.
I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can’t get out with the way things are being the sole caregiver so Facebook is a godsend. It sure gets lonely. – Renee
Facebook pages aren’t the same as human connection, but you might find some understanding on other caregiving pages. There are some that are private, and most I have found are under the sandwich generation title. – Chelly
A group on Facebook filled with like-minded couples all dealing with spinal cord injuries. It’s called Love Like This Life. Wonderful group. – Erin
I have found great support though 2 fb groups for SCI caregivers and spouses and another for FTT. – Kirsten
You can connect with other caregivers in our private Facebook groups.
Volunteer caregiving organizations
The Alzheimer’s Support Groups has a 24/7 helpline 800-272-3900. There may be Faith in Action or National Volunteer Caregiving Network respite programs in your area. – Helen
Home Health Care Agency…but I miss so much time from work when the nurses choose not to show or cant show. I dont have family or friends to help. My daughter or my other son they help here and there when I get to a point where I HAVE to have some time for myself. Surprised I still have a job. – Rhonda
Other caregivers
Personal support. Just having someone to talk to, who can say with all understanding, “I get it. It’s hard, I know, but you will get through it” because they have been there. Having someone who can provide real, honest empathy instead of empty platitudes. – Debbie
You can always connect with other caregivers here as part of our community.
Hospice
Our Hospice Nurse and Aids. My Aunties, Cousins and friends who share funnies with me on Facebook because they know I can’t get out too much. – Carla
Palliative care then hospice for my parents. – Deb
Hospice was a life saver. Their employees and volunteers1 – Julie
Family & friends
My husband has been helping me take care of my mom in our home for over 13 years. I recently completed my Master’s Degree and could not have juggled caregiving, work and school without his support. He is an amazing husband and the best son-in-law ever. – Kathy
My husband. We’ve been married 3.5 years. He is God’s blessing to me. – Jeannine
Right now my younger brother. He just recently took over so I could have a ‘me’ day in town. – Mary
My sole support for caring for my adult son with muscular dystrophy is my younger son and a couple friends. – Erika
Support is limited
We were caregivers for over twenty years and over time friends, family and others drifted away and we were left on a island with our loved one and each time we reached out for help from Agencies the door was slammed shut or we were told they could provide someone for two hours one time a month. Caregiver support is really a myth. – Jean
You can see all of the responses here.
Nowhere
MDA/ALS
Have not found any.
My Church Family !
If you open up and talk, there are many out there that understand because they have been there too Just a pat on the back, a hug, or a “I know what you are going through” go a long way to support. And there are loving caring people out there to hire to give you respite. Look and you will find.
None here in Australia!! I went down every avenue to find help caring for my disabled aunt as well as being a single mother….they make it so hard I can see why people give up being a caregiver.
Haha!!!
This page
This page has been my only support. I still read it even though my mom died and I’m no longer a caregiver. It still brings me comfort so thanks!
Here. A TBI support group. That is all.
I have not.
caregiver space is mazing, by all who give of their time and care to those who are in need, a million thanks.
So far have scouted out our church, our support groups, agencies, care.com, Jr college and, as much as I’m able, same town university. I’m bewildered, exasperated, disheartened…no one will spend companionship time for free or small wage with my 66 year old husband who is in severe stage. Not his daughter, not his son, not his siblings. No friends except one older friend who will only go upon request, not just regularly, and she much prefers me there (defeats the purpose). Only my mom would for free but she’s 80 and homebound.
Here and a couple other sites
Talking with friends and some family
No one specifically. Talking to friends here and there
Nowhere. I’ve had social workers work for months to find someone or someplace that would provide low cost care. Wish I could give recommendations. There is a website care dot com that has listings of caregivers of many levels of experience that friends have used for their lower maintenance care (no medical experience) and there are retired nurses or nursing students who are on it.
There are organized support groups and they offer limited assistance. As far as daily struggles go, not much out there.
The best support you will get is talking to someone who is living it otherwises, no one understands.