Mar 24, 2012

Alzheimer's Caregiver Permission

What is the best decision for the person living with Alzheimer's disease?

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Caregiver Permission
Saint Jane Frances de Chantal
Permission. Granting yourself permission. The act of permitting. The act of caring.

The majority, most, of Alzheimer's caregivers find themselves at the point where they need to "accept" that the only alternative left is to allow their loved one to be taken care of by someone else. To rely on the personnel at an Alzheimer's care facility to take care of their loved one.

For a long list of reasons, mostly guilt, this is often an agonizing, excruciatingly difficult decision.

For many caregivers the admission that they can no longer "do it" comes with an all encompassing feeling of failure.

The caregiver not only asks themselves if it is the right thing to do, they wonder if they are a "bad person" for doing the right thing.

This very difficult decision is compounded by an element of trust. Can you trust others to care? To care for a person you have known for all, or most of your life. Can you trust them?

The decision to "place" someone in an Alzheimer's care facility is often compounded by a simple reality -- how can you know, know for sure that the facility you are picking is staffed with personnel that know what they are doing? That know how to deal with a person suffering from Alzheimer's disease. How can you be "sure" that the person you love will be cared for in a fashion that they have become accustomed to at home?

Are you abandoning them?

How do you arrive at the point where you can "permit" yourself to do what is right? How do you give yourself permission? Where does the permission come from? From within? Or from others?

The answer to these questions are both simple and complex.

If you can no longer care effectively for someone with Alzheimer's you must decide -- what is best, what is the right thing to do?

What is the best decision for the person living with Alzheimer's disease?

Safety, security, the need for professional care are elements in this equation.

And, what about you the Alzheimer's caregiver? Are you equipped emotionally to carry on; or, have you reached the point where you can no longer do it?

If you continue are you going to go over the edge into the depths of depression? Or, is it just this simple -- you can no longer care effectively. Are you at the point where you might be doing more bad then good? For yourself, for your loved one?

If the person living with Alzheimer's disease lives on until the severe stages it is likely that they will need the "professionals". People that are "hands on" experienced. People that have been there and know what to expect -- and what to do as a result of their collective experience.

People that are on the job around the clock.

Most Alzheimer's caregivers come to the job with little or no experience. This is true even with professionals like doctors and nurses. Alzheimer's caregiving is a unique experience for most. As a result, this lack of experience and lack of frame of reference eventually forces us to turn to the professionals for around the clock care.

My goal for Dotty and me? Our shared goal is clear and straight forward. Make it to Hospice. Not into the Hospice. To the point where I can keep my mother at home with the help of Hospice. Will we make it?

What if we don't make it? Then I'll have to give myself permission to do what is best for Dotty. I'll call on the professionals.

In the meantime, I am learning from the others that came before me. Like: Max Wallack, Kerry Runyeon, Sheryl Lynn, Rose Lamatt, Pamela Kelly and the many that have emailed me and told me of their own very difficult decision and how it made them feel. How they felt.

I can say this. When my father was dying from terminal cancer, Dotty and I were able to keep him at home until the day he died. We could not have done this without the wonderful support and care we received from Hospice by the Sea.

I know that we have several people on this blog that understand the concept of "permission" better then I do. They are experienced professionals that deal with this issue with caregivers that find themselves in this emotional and psychological trap.

I hope they will decide to write about this most difficult of issues -- permission -- here on the Alzheimer's Reading Room.

We need their help, advice and experience. Sooner or later, most of us will need them.

Original content Bob DeMarco, the Alzheimer's Reading Room