Streams

Caregivers Support Group

Tuesday, February 18, 2014

nurse, home health aide, home care (Getty)

Nell Lake discusses the relationship between caregiver and patient and the issues of old age, end-of-life care, medical reform, and social policy. Her book The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love is about a local hospital’s caregivers support group.

Resources for caregivers

caregiving.org

Alzheimer's Foundation of America

AARP Caregiving Resource Center

eldercare.gov

Guests:

Nell Lake

Comments [17]

Brian Stein from Manhattan

There are programs that are for people who have Alzheimer's , dementia, and brain injuries in their home. These programs require Medicaid but an elder care attorney can advice on how to obtain. Medicaid eligibility without losing all assets. These programs can provide social work and home care as well as counseling, respite care, etc. The programs are called the nursing home transition and diversion program and the traumatic brain injury program. These programs are administered by the VNA of Staten Island in NYC. They can be reached at 718-816-3555. For Long Island the program is administered by the Suffolk Independent Living Organization (silo). They can be reached at 631-320-1662. In Westchester these programs are administered by the Westchester Independent living center (WILC). They can be reached at 845-228-7457.
These are excellent programs and are extremely flexible in how they can assist.
In the interest of full disclosure; my company, All Metro Health Care, provides services through these programs throughout New York State.

Feb. 19 2014 09:00 AM
Jed Levine

The Alzheimer's Association, NYC chapter has over 100 support groups for family caregivers, including the Samuel Field group, mentioned above which we co-sponsor. For more information call our 24 hour Helpline 1 800-272-3900. You can also visit our website ALZ.org/NYC.

Feb. 18 2014 06:11 PM
John A

Read every comment. Lived through this about 5 months also.
Marti from the Hudson Valley:
My experience also. I am reluctant to discuss here. I was able to move in with my father and act to protect him, but had to give up any ability to complain in order to do so. Did seem to be a valid compromise.

Feb. 18 2014 01:41 PM
Jonah Okun from new york, ny

To Marby and all the other caregivers out there:

Sometimes making an in house support group isn't always realistic for caregivers. TheCaregiverSpace.org provides a free online place to feel understand, share openly and locate meaningful support.

This is a place for all caregivers.

Feb. 18 2014 01:40 PM
RM from Brooklyn

Marvey(?) who has a 63 year old husband with some brain related issues (TBI?) could approach this organization in NYC that works largly for Alzheimers patients.

http://www.renewalcare.org/about/

Feb. 18 2014 01:35 PM
muzz from NYC

I feel for the woman whose husband has a brain injury. Perhaps his doctors could refer her to appropriate support groups. There are several organizations that purport to help with this (brain injury foundations, etc.) It's very isolating, wishing her much support.

Feb. 18 2014 01:34 PM
Adrienne from Inwood

Support for the caregiver is essential! A good resource for a well spouse caring for someone chronically ill is wellspouse.org. There's a support group lookup. Worst comes to worse, you can start one.

It's the outgrowth of a book called "Mainstay" by Maggie Strong (pseudonym for the writer Zane Kotker) who started a movement for caregivers more than 20+ years ago

Feb. 18 2014 01:34 PM
Lorraine Furey from Highland Mills NY

Can anyone address the guilt for caregivers who had to put their parent in a nursing home when home care was impossible? My mother has been in a nursing home for 8 years now. I cry every day on the way home from seeing her.

Feb. 18 2014 01:32 PM

Sadly there is the societal stigma of gender-role where men who care for relatives are seen as some aberation which doesn't seem to be so readily attributed to women.

Feb. 18 2014 01:32 PM
LOUISE WECK

RE:CAREGIVER GROUPS
TRY THE Y'S. I WENT TO A WONDERFUL CAREGIVER GROUP AT THE SAMUEL FELD YMHA IN LITTLE NECK. THER WAS NO CHARGE ALTHOUGH THE PROGRAM FOR THE DEMENTIA SUFFERER DID HAVE A COST.

Feb. 18 2014 01:32 PM
Christine Sotmary from Westchester, NY

We are working on a new profession Professional Caregiver Advocate to support Caregivers in two ways. One is to sit with individual families to find out what they need and refer them to the right programs and professionals and the second is to train a community activist to create 12 different programs to help Caregivers cope.
Also CaregiverAccess.org has many resources for Caregivers in Westchester.

Feb. 18 2014 01:31 PM
Vicky from Manhattan

I'm sorry, but my perspective is completely different-nothing about this is a blessing. My mother has dementia, lives in assisted living and is continuing to struggle. I love my mother, she loves me. But the expectation that I give up my life to care for her is blatantly unfair. I have had to forgo job opportunities, my social life is shrinking, my stress level is off the chart. I am exhausted and so frustrated with the kindly, sympathetic nods of people who tell me that I am such a good daughter. BS - Put your $ where your mouth is. Fund services. Establish services that are appropriate. In NYC the least expensive care is in excess of $6000/mo and that level of care is minimal. As her needs grow she will need more. Not sure what we'll be doing then. But I do know that neither of us consider it a blessing....

Feb. 18 2014 01:30 PM
Peppa Labaija from Bergen Cty., NJ

My Mother and I always had a very difficult relationship. When she was diagnosed with cancer I was in the process of moving to another state. I made the decision to stay and care for her. Knowing that this was the last stage of her life removed the walls between us and we developed a relationship I never thought possible. As an only child I had no backup so it was very difficult at times but I am thankful for every minute we had together. She died at home peacefully in her own bed.

Feb. 18 2014 01:30 PM
Marti from the Hudson Valley

I wonder if there is any evidence of relative caregivers denying other family members access to the elderly person and refusing offers of help. I've personally witnessed a relative taking over the care of an elder and then creating a scenario in which the relative in question became the physical, legal and emotional gatekeeper, with cruel and painful consequences for the rest of the family.

For the woman who was looking for support, try: http://www.caregiving.org/

Feb. 18 2014 01:24 PM
pibbles from brooklyn

I agree that taking care of my own mother was a blessing, but it was also *really* hard. I am pleased to hear that some attention is being given to the joys of caregiving, I'm shocked that there have been so few calls addressing how incredibly difficult it can be too.

Feb. 18 2014 01:24 PM
Ana from NJ

We just moved my mother back to her country as the family can provide full time care after being diagnosed with dementia. She is under the care of a cousin of hers with daily contact with my brother and other family members, however, she is getting very aggressive to the point where we fear for the caregivers safety. We are trying to make the transition as smooth as we can but this aggressive behavior is proving difficult to manage. Any advice would be greatly appreciated.

Feb. 18 2014 01:11 PM
georgina from NYC

There are support groups for just about everything. But I can't find an in-person support group for caregivers of elderly parents in NYC. Every nursing home should have one. Everyone knows the caregivers need help. Why is it so hard to find?
Thank you.

(and if you know of any group in NYC, I would love to hear about it)

Feb. 18 2014 12:56 PM

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