Care Giving at Home for Advanced Alzheimer

My family has been dealing with the “loss” of our mother to Alzheimer’s for over 7 years now. I find it very difficult to decipher the medical, research, nonprofit, & governmental worlds – the information below may be useful.

My father who retired at 59, is mom’s primary caregiver. He is now 74 years old. My father is the type of person who could not find his own socks without the help of my mom. He now bathes, dresses and feeds her every day. My sisters and extended family help too, and we found a caregiver for my mom who comes 3 days a week, 8 hours a day.

Finding a caregiver is like finding a mate, yet, it costs a lot of money. We learned early on, that the middle class does not qualify for services – nor can you really afford it. We had COSA social workers at the house, called many different governmental agencies and didn’t get any help. We searched and found care givers on Craig’s list and went through about 5 people before we found our current, wonderful lady. The most important quality for us was that the person to help with mom's care had to be nice and patient, and provide some limited activity. We had problems with the first couple care givers who started off great, yet, became “lazy” and/or called out etc. Dad did not want to use the agencies that provide home aides although they are fully insured. Dad was afraid mom would not get consistent care. He pays his caregiver directly – saving a little.

Newly, we are also getting services through Medicare – this was more of a hassle than it may be worth for some people. Medicare only treats a “disease” that has a finite end. Alzheimer’s is progressive, and mom is not “trainable” to take care of herself. Unfortunately, she is at the point where she cannot do anything for herself.

A couple of years ago mom started seeing a gerontologist as her primary physician. She has other issues including a pace maker. The frustrating part is that doctors don’t do anything to “treat” Alzheimer’s. We kept asking about services from Medicare, especially when the government said it is a disability. Finally her physician got an agency to come and assess our needs within the home. You need a “prescription” for this “agency.” They send a social worker, and an occupational therapist/nurse. We asked for a physical therapist to help mom with walking and other physical strength. While this is active, we can have a home health aide come to the house a couple days a week and get mom up, bathe and dress her in the morning. It is not much and a lot of red tape to go through yet we were able to get some equipment too. Dad got raised toilet seats, a hospital bed, and is getting a lift installed for mom to go up the steps. We have to keep on top of the agency, and there are so many people involved, it is hard to get straight answers. We went through 2 agencies as the first one was far from the home – we didn’t know this at first.

If you are like my family, and want to have your love one stay home the following may help:
- Find a good primary care doctor, gerontologist, to handle all aspects of “healthcare” for mom
- Look on Craig’s list for home health aides, care givers etc. – Interview, spend time with them. Make sure they live close to the house etc. We posted an ad ourselves the last time and received many responses.
- Ask the doctor to refer an agency for Medicare services
- Don’t underestimate your needs. It may be a short time until your loved one is incapable of getting around on their own. Tell the “social worker” or occupational therapist if there are any issues with bathing, bathroom, eating, walking etc.
- Continue to lobby for services, this is terribly frustrating, yet needed to keep loved ones at home.