Where are the Home Caregivers?

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Alzheimer's ...for caregivers

"Where Are All The Home Caregivers?" ©

This was one of the burning questions asked at the 1995 White House Conference on Aging.

"We know they are out there, but we can’t find them. Community services and support services continue to remain untapped and these are services that caregivers can benefit from and services which can improve the quality of life for both the caregiver and the family member. How do we justify the need for improved services when we aren’t utilizing the ones we have?"

As a home-caregiver I offered my personal experience navigating the health/support system for my husband and my observations of what other caregivers experience. I believe there are significant reasons for why we become so elusive.

Overt discrimination resulting from assumptions about caregivers and caregiving that are inaccurate and biased.
Lack of understanding and reverence for the sanctity of the role of the caregiver.
Misinformation about the illnesses professional service providers are dealing with, Alzheimer’s residing fairly close to the top of that list. You cannot accurately help any caregiver if you don’t understand the nature of the disease being faced. Each illness has its own unique aspects that also make the job of caregiving equally unique. The emotional and physical barriers to caring for someone with ALS are different from those presented by Alzheimer’s, or Cancer, or Multiple Sclerosis.
A very real frustration, often transferred to the caregiver, over the inability to offer viable solutions because of government restrictions, lack of information about available services and funding problems.

However, the answer to where we are, is obvious: We are where we have always been. We are at home doing the best we can under very difficult circumstances, trying, for starters, to summon up the courage to deal with voice mail!

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If Alzheimer caregivers need anything from their professional helpers and the public in general, it is permission to take on this level of care with the same confidence and resolve our children are afforded without question or that someone facing cancer or MS is afforded. While there are legitimate concerns about the well being of a caregiver who is left largely without help or support, there seems to be real lack of concern for the feelings, the desires or the wants of the person who actually has the disease and a general dismissal of the caregivers desire to honor those qualities. Too often the care is delegated to the realm of drudgery. Too often our people are thought of as…

"SOMETHING TO TAKE CARE OF,"

instead of

"SOMEONE TO CARE ABOUT."

This attitude tends to undermine any resolve the caregiver has towards taking on the tasks associated with this disease and it tends to dishonor the connection the caregiver feels towards their person. Their feelings of connection aren’t only dismissed they are labeled as unrealistic, co-dependent, controlling and a number of other sobriquets none of which begin to tap into the mix of feelings or fears the caregiver and their family member really feel.

This phenomena is the result of bias, bias about this disease that is expressed in the jargon, and the attitudes, and the beliefs of too many who reside safely on the fringes of this disease. These negative attitudes impact on both the well being of the caregiver and their family member.

I think it needs to be said, that as long as Alzheimer’s is characterized in terms of ‘forgetfulness or memory loss,’ a concept that does little more than trivialize the enormity of the impact this illness has on those who get it, the bias that exists towards it will continue to fester. Unfortunately, what most people relate to is their own fear of this disease and that includes those in the professional community as well as the general public and those unresolved fears influence how they relate to the caregiver facing this disease with a family member.

The brain holds our identity as human beings and to lose the function of this organ is, in a very real sense to lose our identities. Is there a fate worse than death? For many of us, to live past the use of our brain falls in that category, and yet what about those who suffer this fate? Are their identities solely existent in their own ability to recall, relate and remember the sum total of their lives or do we, who still have use of our thinking process have an obligation to afford regard and reverence in spite of their affliction? These are questions that must be asked if attitudes towards this disease and those who get are to be changed.

It is time for service providers, to take the lead and set a new standard of attitude and care for our Alzheimer’s family members. They must begin by acknowledging the existence of the bias, and that requires an examination of their own emotional response as well as their attitudes towards those who get this disease. They must begin to question the validity of the language that surrounds this disease. They must also become educated about this disease and the actual care needs before they can begin to give advice on how we caregivers should deal with the challenges.

In other words we need something more than reinforcement of how difficult this caregiving experience is. We already know that. What we need is specific information on how to deal with the behaviors, the incontinence, the family dynamics, and the negative attitudes we endure from the moment of diagnosis. We need role models and we need tools, options, and information on available resources, and we need encouragement. Sad looks and reinforcement of all the difficulties this disease offers really doesn’t help much when we are facing very urgent care issues.

On the other side of this coin, we caregivers have to start empowering ourselves if we are to glean any sense of pride out of doing the tasks or help our people maintain their dignity. The reality is that millions of us are taking on the challenges of Dementia care in spite of all the rhetoric without compromising the dignity of our family members or ourselves. We are doing a remarkable job and we deserve to be regarded for our efforts. We need to stand up and make our voices heard. We need to take the time to challenge the prevailing rhetoric about Alzheimer’s Disease, we need to demand that our service providers get educated about this illness, and we need to speak out on behalf of our family members who can no longer speak for themselves.

If we don’t, who will?

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