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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 1/7/14


My mother is in a rapid decline with dementia, as well as other health issues.
She is unable to be alone for any time period.

My brother has moved in with her and is with her all the time, providing transportation to doctor visits, making meals, ensuring correct medication and running the house. He has zero income and this is putting a hardship on our family, especially him. My mother's Social Security was greatly reduced when my dad died, so funds are limited.

We have become aware of programs providing funds to home care individuals.
How do we apply? The local agency for aging has referred us to various agencies who refer us to other agencies and we just get the runaround.

Please help.

Caregivers Reply

Shared by: Jeannie Wolfsen
Central Coast California

With your mother has multiple health issues and dementia, she may be a candidate for Home Health which has a tremendous amount of support services. You will need a referral from your primary care physician (PCP). Possible reasons would be medication management and symptom management of the medical issues (ie: hypertension, diabetes, etc.). You may want to check with your state programs as there might be a program which pays friends/family for care-taking. Good Luck!

Shared by: Donna Onesian

I am a social worker in a geriatric medical clinic. Each state is different but a good place to start would be in a clinic such as ours where the doctors address medical concerns and the social worker will help the family sort through caregiving, social and financial issues. Another suggestion would be to call the local chapter of Alzheimer's association, who can be a wonderful source for resources. The national number is 800-272-3900. Also, get on line and look up your states government health site for seniors- this may be of help as they can have benefit qualifications on line. Hang in there.

Shared by: Kay

I am not sure where you are located but in MN there are a number of programs for the elderly with limited income. Programs that will pay for updating bathrooms with grab bars, paying for incontinent pads, lighthousekeeping and PCA(Personal Care Attendant), respite, Day/ElderCare community programs, transportation to medical appts, RN/Case Mgr visits, foot care etc. PCAs can be hard to find and hang onto and so often counties will pay family members to be PCAs. Also I am not an attorney but I believe if your brother is living in a home that is owned by your mother for 2 yrs or longer, than that at that point would not be considered an asset.

If you would like to write more or contact me to discuss further please let me know or perhaps the staff at the newsletter can let me know. There is a decent amount of county and state assistance for the elderly who meet limited income standards, which can bring a good deal of relief to caregivers who are trying to do it all. I took care of my mother (by myself) who had limited income and numerous health problems. She qualified for what was called the Elderly Waiver Program and the assistance was very helpful! Inquire about the program with the county (where she resides) social services dept. Not sure if the program is a county, state or federal program. I hope it still exists as it brought a good amount of relief. One last thing to mention is to state that it makes all the difference in the world to have great doctors involved who really want to help their patients and listen to the caregiver. That is key as it is the physician who is often the one who is listened to th e most and can help make things actualize in the home. Hopefully your mother has compassionate, knowledgeable physicians who understood geriatric care involved, as they can often be captains of the ship. Good Luck and Peace, K.

Shared by: Marilyn Bown

Acumen Fiscal Agent is in Many States. My state's have a self directed option. This would allow your brother to be paid for the care giving for a few hours a day. You your Mother (if capable) or some one close could be the employer of record hire your brother and possibly someone to give him a break.

If you want more information about the self directed option please e-mail me.

Shared by: Carolyn
Rockville, MD

Your mother may qualify for Medicaid, which could help pay for some amount of in-home care to relieve your brother. Your state dept. of aging or disabilities is the place to start. Also, check to find other sources of help.

Shared by: Carolyn Lee
Tulsa, OK

If your father or mother served in the military, and must have served at least one day during wartime, she is qualified for "aid and attendance" for surviving spouse. It is a rather long and arduous process but I am now receiving about $1200/month for my mother.

Shared by: Frances Contreras
Fresno, CA

If you are in the US, and your mother has Medicaid, then she may qualify for In Home Supportive Services, which pays for some personal & chore care as well as protective supervision hours, if the person is at risk for injury if left alone. While it does not pay for 24hr care, it does help. There is also the Adult Day Health care programs/ CBAS in California which are paid through Medicaid, or the Adult Day care programs which are usually connected with the caregiver resource centers. Also many Agencies on Aging have caregiver support services that can at times pay for respite or in-home care assistance. At the least they could help direct you. For In home supportive services (IHSS) contact your local county office. For Agencies on Aging:

I hope this helps,
Frances Contreras MS CRC
Clinical Manager
Fresno-Madera Area Agency on Aging

Shared by: Amy Yoder

I just lost my Mom at 97 and at least ten years of dementia. Both my sister and I are nurses, so we were determined to give back to her. The last 2.5 years of her life she lived with one of use 24/7. We had a schedule, and I now realize after hearing from others how fortunate we were to have each other! I took early Social Security and retirement at 63, my sister was already retired.

We were constantly told that we could be reimbursed or find low cost help, and we never did. Even her Doctor admited that there wasn't anything available. There are many, in our area, of really good in home care givers, but we could afford them unless we sold her house, and we didn't have the energy to get it ready to sell and take care of her too. She died in our home. My sister and I wouldn't have had it any other way, but we also realize that everyone has their own journey, and the path isn't the same or right for everyone. Our husbands were patient and kind, and having her in our home exposed her to us everyday, so when there was a good moment, we got to experience it with her. She wasn't combative and up until the end only needed partial assistance for everything.

Good luck on your journey, we live in California so that might have been part of the problem :)

Shared by: Jim Maurer Danbury

The area agency is a great place to start. It is disappointing you feel they did not answer your need. I would give them another chance with the additional information you learned from the referred agency they sent you to. Also I would be remiss if I did not suggest local Adult Daycare/Day Health companies be contacted. Often they can direct you to those agencies that can greatly reduce the daily expense of their services. Their services per hour are lower than homecare and can give your mother socialization and stimulation you cannot typically get at home.

Shared by: Barbara Fenwick
Manitoba, Canada

I am assuming you are in the USA? Here in Canada each province has a self manage caregiver program that pays the home caregiver when there is none available for round the clock thru the Homecare Program. So, as a caregiver for my husband who has COPD and is on palliative care, I have access to a wage for my work to a max of 55 hrs a week at the going rate for caregivers. It's a wonderful program but I had to stumble upon it on the govt website to learn about it. Hope to make more Canadians aware of this program, and maybe inspire some to fight for it in the USA. After all,we are saving the govt billions on providing the care at home.

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