Friday, January 4, 2008

What Does It Take To Be A Caregiver?

I asked this question the first time in early 1999 and then again in late 2001 I asked it twice more.

The first time I asked the question I had no clue whatsoever what was involved in caregiving. Except I knew that I knew squat about it and I really couldn't imagine myself nursing anyone. It wasn't about Alzheimer's then because I didn't really know about that disease.

Dad knew what he wanted which was for all of us to go home from the hospital. Well, really he wanted to go home with mom but he knew he needed me to help. He wasn't diagnosed at the time and seemed competent but a little eccentric. Mom really wasn't capable of deciding what was best for her. I told Dad that I had to get back to Dallas and he just looked at me and said "Well, you can't leave." And that was that. There was never anymore discussion.

I visited with a couple of friends about what I was contemplating. One was a Nurse turned Physicians Assistant. The other was someone who had experience as a caregiver. Both were greatly trusted and respected. I wanted to be as certain as I could be that I could provide a satisfactory level of care. And I had business responsibilities to consider. There were two social workers that also were extremely helpful to me. Then I was mainly concerned about medical knowledge and skill or, rather, my lack thereof. I didn't know enough to know the level of my own ignorance.

Of course that first time it was really up to Dad anyway. I would have failed in any kind of custody battle then so it finally came down to whether I helped him at home to take care of Mom or he was doing it without me. But I assured myself that I could learn what was necessary and I could martial enough resources to provide adequate care at home. And I did.

The next time was 2001 when Mom had broken her leg due to a fall down one of the four stairs in the house and we were in the hospital again. This time the medical responsibilities were much more demanding. But I thought I had developed a lot of knowledge and skill in 2 years. And really I had but not nearly as much as I thought. But I was more confident. So I had a little hospital operation going there at the house. Mom died though just a couple of weeks after I brought her home from the hospital. It was so hard then in so many ways.

Then it was just me and Dad and I knew then he had Alzheimer's. And that was the next time I asked. This time I tried to find out what good care for an Alzheimer's patient meant. It isn't all that easy actually to answer that question even now. There were many differing opinions. I didn't have nearly as much confidence left after Mom's death.

I looked at a lot of paid facilities. Basically I have a new appreciation for anyone working in the field regardless of where. It is really hard work and very much undervalued and not appreciated. But, even with that new attitude, I found a lot of places to be like the old TV dinners. The meals looked so yummy and inviting from the pictures printed on the boxes. But the actual meals when cooked and eaten never lived up to the hype.

Then I asked the question pretty often over the next several years. And this last year beginning in 2007 I asked it even more frequently. It seems amazing that just one year ago I was so sick myself and dad was sicker and Judy was sick and we all three were together. I called my doctor and my lawyer and they both were skiing in New Mexico and it really pissed me off.

Sometimes I am asked this question now by people who are just beginning their own caregiving.

I tell them that it is possible to learn the medical knowledge necessary and it is possible to have someone help them develop the nursing skills. And that includes stuff they can't even imagine doing now. And, yes, it means giving injections and all sorts of other stuff. And it is possible to manage the business stuff and the financial stuff and the legal stuff and all the other stuff stuff.

I tell them there is a lot more loneliness and isolation than they can understand even with me telling them about it. I tell them there are periods of extreme boredom punctuated with periods of extreme terror accompanied by physical and emotional exhaustion that exceeds what I experienced in Army Basic Training.

But as bad as all that is I tell them it can be handled. It isn't easy but it is survivable.

Then I add the BUT. And that's the grief.

It's the grief that is so difficult. Grief can't be managed. Grief is experienced. I would say it is endured except that really isn't true. Endurance makes it seem like a race or some event that if you just tough it out long enough it will end. That's like the physical and emotional part. You endure that. But grief isn't like that. Experience is the right word. You just experience it.

And caregiving for Alzheimer's has a lot of grief. It is the gift of grief that keeps on giving. You experience the loss of one thing and then it returns only to be lost and grieved all over again. There is loss followed by loss. Then something happens that makes you even wonder if it is Alzheimer's and there is this kind of cruel hope that supplants the grief for a bit. Except that there is this nagging doubt in your mind. Then the loss reoccurs and the doubt is promoted to certitude. The disease does not disappoint in this regard. If the one thing is not lost then something else is.

And that's only the grief of loss for the patient and you. There's a whole different grief for other people who are also victims. They are either victims by virtue of their own relationship with the patient or with the caregiver. But they experience the loss and you get to grieve that right along with them. And there is nothing you can do about it. Not one thing. And the sooner you learn that lesson the better off you are except it is a lesson you can't really ever learn.

So what's my point you might ask? Well, it is that the main thing you have to be willing to do if you want to be a caregiver for a loved one is experience grief.


Annie said...

My post for today should read,"Go read Terry's blog".

~Betsy said...

So well said, Terry. So very well said. It IS the grief that happens over and over again. It never goes away - or if it does, it returns again with a vengeance.

You are a remarkable person. I am so glad to have met you and I thank you for putting your honest thoughts to words.

nancy said...

oh how i agree with you, grief is the gift that just keeps on giving. it's kinda like the energizer bunny, it keeps going and going and going.

just when i have a few relatively good days in a row, BAMM, it's right back there.

as for the teaching of nursing skills, you are so right. over the 30 years of nursing i have done, i have taught people and families how to do things that some nurses or physicians aren't familiar with. i always told them, "nobody has a more invested interest in doing this right than you". people can learn most anything they want to.

on the other hand, with all my nursing background, nothing was able to prepare me for being a caregiver for AD. all the professionals i sought out never gave me as wonderful hands on advice as the caregivers out there doing this job daily.

thanks for your post, it was great! i too am so glad to have met you and call you my friend. blessings.

Joanne D. Kiggins said...

What a deep and exceptionally true post, Terry! And there are so many different facets of grief that caregivers will experience. You're right...grief is the gift that keeps on giving. Great post!

Lori1955 said...

Wonderful post. I remember when I went to vounteer for Hospice and they were a bit skeptical of taking me. I was told that they prefered that I wait a year to grieve the loss of Helen. I told them that what they didn't understand about this disease is that I had been grieving for 6 years.

I don't know that when I took this on that I was willing to experience grief but I sure got my share of it.