How Can Hospice Help a Person With Severe/End Alzheimer's?

4 answers | Last updated: Sep 12, 2016
Sissa720 asked...

My mom (90 years old and in the severe/end stage of Alzheimer's) is currently being cared for at home by my 84 year old father (not in great health - bladder cancer, glaucoma, deafness MG). Mom cannot walk, talk, listen (very deaf) cannot take care of and really isn't aware of her toileting needs or her other bodily functions. My dad is taking care of all things, he gets her up out of bed, tries to toilet her, tries to hold her upright (with extreme difficulty) so he can clean her after she has peed or had a BM. Tries to change her diapers and at the same time dress her in clean clothes. She is under hospice care but the told him they could only come in 5 days a week for 90 minutes - that leaves him the entire weekend on his own and 22.5 hours on his own with her every week day. Is it possible for him to get more help through hospice? My dad is rapidly approaching total burnout......


Expert Answers

Brenda Avadian, brings knowledge, hope, and joy to family caregivers for loved ones with Alzheimer's and dementia. She cared for her father with Alzheimer's and helps families one-on-one and in groups. She is the author of eight books, including the pioneering memoir "Where's my shoes?" My Father's Walk through Alzheimer's and the Finding the JOY in Alzheimer's series. She presents vivid, compelling, and funny keynotes to both professional and family caregiving audiences.

Caregiving is challenging enough for one; with two who are deaf and of ill health, it's nearly impossible.

Hospice plays a critical role in supporting your family while your mom lives with severe/end stage Alzheimer's.

Whether or not they intend to, your parents are the models of The Greatest Generation--seeking to independently handle things on their own 'til death do them part.

With all the resources available to caregivers today, does it make sense to do most of the work alone?

No.

I'd recommend talking with the hospice agency to see what else your parents are eligible for. Depending on your insurance, your parents may qualify for in-home care.

My heart goes out to your family--especially, your dad. He's a real hero, but we want him to live. With the rate of your dad's exhaustion and your mom's late stage Alzheimer's, you may lose both your parents in a short period.

Also, call your local Department on Aging to see what services are offered in your area.


Community Answers

I am not sure that you can get more help from the hospice. Your father might have to look for a nursing home for your mother, where she could get 24 hr care and still receive hospice care as well.


Jennyb answered...

Hi, Sissa. I can more than understand why your dad might not be willing to consider a nursing home ... having cared for my dear husband at home until he died of end-stage dementia. Hospice does seem to be doing what they are allowed to at this stage -- although you might also check into whether they have volunteers who would come sit with your mom to give your dad some respite, andor the services of a social worker to help you find support programs and services from other agencies.

I'd suggest three other things.

(1) Contact the Area Agency on Aging where they live, to find out what other support programs and services are available where they live. Some of these would help your dad with routine house/yardwork, such as Meals on Wheels, freeing him up to focus on his wife. To find their AAA see:

http://www.aoa.gov/AoARoot/AoA_Programs/OAA/How_To_Find/Agencies/find_agencies.aspx

(2) If either of your parents served in the Armed Forces, contact their local VA to see if there are any VA programs that might be available to help. Your county should have a Veterans Service Office where you can find an advocate for help with VA. Or, you can find a Veterans Service Officer to assist you at:

http://www.va.gov/ogc/apps/accreditation/index.asp

(3) Check into home care agencies in their vicinity. Your dad has already taken the first, most difficult step of letting hospice aides come into the home. That may make it easier for him to accept additional help from aides, houseworkers (cleaning, laundry, cooking), etc. If they have long-term insurance, some of this help may be covered. Otherwise, it would be out-of-pocket, but your dad might find it well worth the cost if it enables him to keep his wife at home. (Note: if one of your parents was in the Armed Forces, they may be eligible for the VA Aid & Attendance benefit, which could be used to pay for in-home care.)

(((((hugs)))))


Lynna205 answered...

JennyB gave the best answer! What is wrong with the "experts?" Why are you suggesting a nursing home? It is very apparent that is not even a consideration for this man. What about Medicare/Medicaid?