May 22, 2012

Alzheimer's, Hospice Crisis Care

Hospice Crisis Care is provided by a team of hospice nurses and other team members, in home, for as much as 24 hours a day.

Alzheimer's, Hospice Crisis Care

By Bob DeMarco
Alzheimer's Reading Room

Very early this morning I had to call Hospice for a nurse. Basically for an evaluation, some advice, and some basic education.

I wanted to make sure that I understood the situation, the stage we were in, and more or less, the meaning of what I was seeing with Dotty. I was seeking clarification and understanding. This is how I cope best.

Hospice sent the runner, the nurse that runs around from patient to patient from 1 AM to 9 AM. I learned in these last two weeks that night is worse than day. This is the pattern for us. Dotty and me.

This was the second visit from a wonderful, caring, compassionate, extremely competent nurse named Beth.

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I met Beth for the first time last week under very trying circumstances.

As soon as she came in and took action I knew she was one of us. Later on I learned that Alzheimer's had already knocked on Beth's door. She was a One.

As soon as Beth approached Dotty for the first time I saw that she could do something that is hard to learn, speak Dementia.

I saw it in the way she approached Dotty, looked right into her eyes, smiled, and talked in low, slower, clear emphatic voice.

It takes a lot of practice and empathy to learn how to speak Dementia effectively. The words and actions come at a much slower pace. The smile one of the nonverbal parts of the communication is essential. You can't fake a smile to a dementia patient. You gotta mean it.

Beth also had what can best be described as a magic touch.

So here I was again with Beth this morning. She evaluated Dotty and then changed her brief. One single thing stands out. Dotty's blood pressure had fallen to 98 over 55. This came as no surprise to me, Dotty's BP has been dropping daily.

I saw the look of concern on Beth's face. She has a wonderfully expressive face. Great for being a nurse. Not so great if she ever decides to play poker for money.

Next Beth sat down and asked if I wanted the crisis management team. Hospice offers crisis management as part of the Medicare benefits.

Crisis management means twenty four hour, around the clock, in home nursing care.

In our case for Dotty this would basically mean symptom control. Management of pain, shortness of breath, and changes in mental status. Specifically control of agitation.

It also means Zombie-ville. Ativan, Haloperidol, one or both. This is how pain and agitation are usually managed. It would mean, Dotty is no longer -- there.

Beth was clearly surprised when I said no to crisis care. I saw it in her face. I suppose when most people are offered crisis care they jump at the opportunity. I suppose they feel relieved to know that they will have a qualified nurse in house around the clock, 24 hours a day.

Beth started to ask me a series of questions. I explained why I was declining crisis care at this time. She asked how I intended to deal with pain, agitation etc. I'll save the details for another time.

Finally, I said to Beth, if you think I am making a mistake, tell me. I could see her immediate reluctance to answer this question. Beth is a nurse, not a "shrink".

Finally, I said, you were here last week, you are here now. How are we doing? How am I doing? She said, you are doing wonderful job. She meant it.

That settled the issue. Almost. We can also get critical care. This would mean sending Dotty to the Hospice, in house, critical care unit. The answer to that, not likely. Only if absolutely necessary.

Shortly thereafter the aide came to care for Dotty. She asked, do you want crisis care. That conversation was much shorter.

What does crisis care mean for Dotty. Most likely it means Ativan and Haldol, one or both. This translates into "see you later ville", or not there ville for Dotty. Zomby-ville.

Please Note: I had read extensively about drugs like Haldol etc. in the Alzheimer's Action Plan. When the critical care nurse finally did show up on the scene she did try and convince me to use these drugs. I said, NO. Please put that in the book for the next critical care nurse. I am not a doctor, so I am not offering any medical advice here. But I think you might want to read up on these issues.

We are not ready to take that step. We might. I can't say right now. If at any point it becomes obvious that I can no longer manage the situation; or, that I am doing more bad than good, I'll put Dotty into crisis care.

Why not do it you now you might be wondering.

As I have said, I am going to be right right there when it is time for Dotty to go into the light. 

But who knows, maybe it will be a little cloudy up there when Dotty gets ready to go. Perhaps Dotty would hesitate. So she might need me, the person she trusts the most, to reassure her to go, that everything will be fine (it wasn't easy writing these words).

My goals have been clear throughout this journey.

  • Bring to Dotty the highest quality of life possible. 
  • Grant her her greatest wish, to die at home. 
  • And to care for her as long as I could handle the situation we find ourselves in.

By the way, Dotty didn't leave me hanging on this one.

Just days before she was admitted to Hospice care Dotty told me.

I don't want to go anywhere, I want you to take care of me.

Dotty might be deeply forgetful, but she knew what was coming before I did.

I want to send to each of you my warmest regards for the comments you are making and the well wishes, love, and prayers you are sending to us.

I feel like like I am on the two inch line. Two inches to go. I want to go those last two inches with Dotty, and supply her wish. I cannot imagine what this would have been like without each and every one of you.

Thanks to Hospice by the Sea, wonderful really.

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Originally published May, 2012
the Alzheimer's Reading Room