Community Services

Accessing Community Services
and attempting to cope....

by Bob Hoffmann - June 1996

We all know as caregivers that there are few things that can be more devastating to a family than dealing with a progressive form of dementia such as Alzheimer's disease. For those of us that are involved as caregivers for a younger victim (e.g. Early Onset Alzheimer's or one of the more rare forms of Dementia that attacks at a younger age) it seems to introduce unique problems. My wife, Shirley, showed first symptoms of dementia when she just turned 50 years old, and after only two years is rapidly progressing through the mid stages of the disease. She now requires 24 hour supervision and care, and I have quit my job to become her full-time caregiver. This requires that I take her with me any time I need to go shopping or run necessary errands and is becoming increasingly more difficult as she continues to decline. As I have looked out through the community for services that could help me deal with this, it has been discouraging.

Caregivers of victims of any age can feel trapped and isolated at times while trying to deal with a disease that by its nature is imprecise, diagnosed only by the elimination of other causes, and then running its course without any ability to predict the path it will follow, or when or how it will end. Support groups provide a level of confirmation that is needed to come to grips with the disease. For families of younger victims in particular, there is the additional burden to satisfy friends and relatives who are in disbelief with the diagnosis, assuming that there is some factor being overlooked or a family problem. Also, there are fewer community services available for families of younger victims to draw upon. Following are some examples of services that I have attempted to access:

Respite Care at home - Although there is a community service (SAIL Caregiver Connection) to which I was referred that provides respite care through a network of trained volunteers, I was told that we do not qualify for the service as it is restricted to seniors, and evidently receives some funding based on that policy.

Assisted Living - Several times, the new assisted living facility Kensington Cottages was suggested to me as a possible solution as this disease progresses, as they specialize and are trained to deal with dementia forms of disease. When I investigated, I found that they are currently licensed only for age 60 and above, although there is some hope that this may be changed in the future.

Share a Home - Having someone come into my home (e.g. college student, Nursing student, etc.) and live here during the year, in exchange for providing coverage for me when I need to run errands or when I am sick seems like an ideal solution for me right now. As I investigated this with the Share a Home program, I found that it also primarily addresses older families and/or those with limited means. Although I am now on a limited fixed income since taking an early retirement option to become a full-time caregiver for Shirley, my recorded income for last year disqualifies me for the program right now.

In-Home Health Care - I used a service to provide coverage while I was still working, but found it to be fairly expensive and unreliable. At a cost of $15 to $20 per hour plus an up front consultation fee, the caregivers that were sent to me were not adequately trained on dementia related diseases, sometimes showed up an hour late or left an hour early, and did not always perform satisfactorily as a Homemaker Helper without direct supervision which my wife could not provide at this stage. There was limited continuity, with 4 or 5 different caregivers showing up. As Shirley progressed to require full-time supervision, I decided to hire and train someone direct which turned out to be a far superior solution, and more economical.

Adult Day Care - I have visited both Adult Day Care facilities in Rochester, but have been reluctant to try either yet with Shirley, as she is very active and impatient, and I have concerns about their ability to provide the level of security she might require. The attendees I observed were generally much older and more "sedated", and fit within the supervision ratio which was about 1 per 5. One facility did have a special program for dementia victims although I believe Shirley would be too active to participate without sedation.

What I have found in Rochester is consistent with what others that are part of my "electronic" support group have reported. That for victims below the age of 60, there is little help until you reach Hospice which is generally covered under most insurance plans. This can be devastating to the families that are still raising children and still assuming the financial burdens of college, home payments, retirement funding, and other mid-life commitments. I found two cases similar to mine through the electronic support group on Prodigy, and in both cases the spouses quit/suspended their jobs to become full-time caregivers with children still in the home. Both reported excellent support through the hospice programs during the last six months of the disease, but for the time preceding, no access to services beyond local and electronic Alzheimer's support groups. I have been discouraged in that as I have attended conferences (such as the annual Mayo ADCC: For Families) and participated in other meetings that there seems to be very little awareness of this issue, and a curious response (as if "why are you even asking the question?"). It is easy to see why caregivers in this group can feel even more isolated and rely heavily on electronic support groups to maintain their sanity. I am not sure where I would be at today without the help/advice/support of friends that I have made electronically that are in similar situations. It is important that future Health Care reform at both the state and federal level address the needs of all caregivers working to keep their loved ones at home.

So not to be too one-sided, I must say that I count my blessings daily for the help that I have been able to obtain. I was in a position to take an early retirement which has allowed me to move into the role of full-time caregiver. I have a daughter in college that has been a big help in giving me relief during the summer vacation period and on holidays, although the emotional impact on her has been evident. My son who graduated two years ago and was working in Florida, chose to relocate back to Rochester where he currently is employed, and has also been able to give me some relief on his days off. Other sources of support I have been able to find:

Friends - In the early stages, friends tended to pull away, afraid to ask questions or call. There seems to be a reluctance or assumption that you want to keep dementia a family secret. They do not know how to react, how you will react, how Shirley will react, or how they can help. They are concerned and want to help, and I have found that you need to take the initiative to help them and help yourself. After attempting to talk to several of Shirley's close friends, and seeing the difficulty and emotions (on both sides) to discuss the disease, I decided to write a letter to them explaining exactly what was happening, the prognosis, and what they could expect from her. I also bought a book called "Living in the Labyrinth" which describes the disease from the victim's point of view and gave it to them. The response was very positive, as they began to visit and take her out to lunch periodically when she was able, and now come to our house twice a month to allow me to attend the Men's support group. They feel good about being able to help, it has improved the quality of life for Shirley during this stage, and I needed the help.

Church - I waited longer than I should have to contact the Church for help. They helped me locate someone that I was able to hire directly for the last couple months that I worked, and there have also been periodic visits and a desire by one of the Men's worship groups to find a way to help.

Electronic Support Groups - This is the age of the Internet, and there are some good support groups available on the online services. Prodigy in particular has an excellent support group for Alzheimer's Disease and for Caregivers. AOL has a similar forum format. Through participation in the open forums, it is easy to establish friends in similar situations and share experiences through private e-mail. When I first posted over a year ago, I was "adopted" by two men that were caring for spouses at home that were in the final stage of dementia with hospice support (one victim was 43 at death, and the other was 51). Besides E-mail exchange, we would sometimes talk on the telephone in the wee hours of the morning when things were quiet at their house. Since the passing of their spouses, I have established other friends in earlier stages and have been able to give back some of the help I received earlier. I believe this media is a crucial tool for full-time caregivers as it becomes their primary access to the outside world, without which the isolation they would incur, in particular during the late stages, would be unbearable. I continue to find and respond to people new to the electronic support forums that I find in states of panic as they try to find information to help them deal with this dreaded disease.

Education/Conventions - The Mayo sponsored Alzheimer's education program, and annual conference have been of great benefit, although as mentioned previously I have been somewhat frustrated with the lack of recognition and resources available to families of younger victims. One of the highlights was the presentation by Nurse Heart, as I got a lot of mileage out of the red clown’s nose that she passed out. At home, I would put it on periodically and let Shirley "discover it". It certainly livened things up and I have since passed that trick on to some of my electronic support group friends. Also, early advice I received from the friends that I made on Prodigy to get a copy of the book "The 36-Hour Day", as well the Alzheimer's Association bulletins, was beneficial to me in gaining an early understanding of how to deal with the disease.

Hopefully as new health care legislation is considered, there will be recognition of the need to support Home Health Care services for all ages inflicted with a dementia, as the disease does not differentiate. The impact of not recognizing this need has an ultimate economic impact as I believe it drives more people into the medical assistance programs earlier, at an enormous emotional impact to the family involved.

My advice to others beginning this journey would be to seek support wherever they can find it, and in particular through friends, neighbors, church, and to get electronic access to an online support group. Besides other "how to" books, I would recommend getting the book "Living in the Labyrinth" which is a best seller that describes the disease from the viewpoint of a younger dementia victim. Understanding the terror that someone with dementia is experiencing and the impact to their self esteem and self worth, is the first step in being able to help them (and yourself) deal with the disease as it progresses.

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