Jun 25, 2012

How Did You Know It Was Time for Hospice?

I want to say to you. There is no downside to requesting Hospice. None.

By +Bob DeMarco 
+Alzheimer's Reading Room

Reader Donna asked under the article, How Alzheimer's Patients Experience Cognitive Decline.

How Did You Know It Was Time for Hospice?

Bob, I have wondered what was different about Dotty on the day after the Philly sandwich, or on the Monday when you went to the doc, that made you say yes to hospice? 
Every time my mom has a bad episode of not being able to eat, barely talking, sleeping close to 20 hours, I will think she is about to leave and then she will be back to her conversing and eating self. Her illness is complicated by presence of cancer. 

But still, how did you know it was time for hospice? 
I know each person is different, but hearing how others arrived at a decision is helpful, if it is something you are ready to write about.
This is one very good question.

Donna, the simple straightforward answer was that I knew I would not be able to take care of Dotty on my own this time around.

Dotty did get very very sick at least a couple of times before she went to Heaven. I did not consider or even think about Hospice those times. My real concern, those times, was whether or not Dotty would bounce back, or if she would become permanently bed ridden.

This time was different in many ways.

For example, during previous episodes I would have to help Dotty out of bed, put her in the wheelchair, get her to the bathroom door, and then help her walk the last few steps to the commode. This was doable and mostly just stressful.

This time around it was nearly impossible to get her up, and to help her move those last few steps. It was almost like she was dead weight.

There were two more things that were very different.

When I was talking to Carole Larkin, I could hear the concern and angst in her voice. I had been talking to Carole for years, so she was around during previous episodes when Dotty was sick.

But this time the tone of Carole's voice sounded very different than it had in the past. I said something like, go ahead and say it. Or, tell me what you are thinking. Carole basically told me she thought Dotty was in terminal drop.

One thing here that everyone should know. Carole is a geriatric care manager. This means she has lots of experience with older people, and older people with dementia. So she knows the signs.

I think she was able to say to me what she said because she knew I trusted her, and was familiar with all the ups and downs that Dotty had over the years. So she had an informed opinion. I registered her concern. This was about a week before I requested Hospice.

It was very valuable to me to have the well informed and experienced opinion of Carole at the time.

Others might consider hiring someone like Carole even if it is on a just an every once in a while basis.

When I finally said to Carole on Monday morning, I am going for the Hospice, she encouraged me to do so.

Donna, there was something else that was as important. The single biggest thing that made this "time around" different was that I knew that Dotty was getting ready to go to Heaven. I did not have that feeling or understanding on any of the other times when Dotty was very sick. Like in January 2011 when Dotty couldn't get herself out of bed and wasn't eating much for an extended period. I didn't have any feeling or inclination that Dotty was going to die.

Donna, this was the first and only time I had the instinct to request Hospice.

However, I want to say to you. There is no downside to requesting Hospice. None.

I think you should consider asking the doctor to have Hospice come in and do an evaluation.

My advice is simple and clear -- make the request. If it is not time they will tell you. If it is time, they will give you enormous emotional and medical support.

I'm not sure if the many readers of the Alzheimer's Reading Room that have used Hospice in the past are still around, if so, I believe they will echo my opinion.

I should also tell you that Hospice was here and assisted us for the last 75 days of my father's life. To say they were a God send would not be an exaggeration on my opinion.

Carole Larkin is also available for consults via telephone, video phone, and Skype. However, she does charge for her services and time. She is an available alternative for everyone here.

June 29th is Dotty's birthday. I'll reveal on that day the exact reasons why I believed that Dotty was ready to do to Heaven.

Readers are welcome to enter their advice, opinions, and experiences in the comments box below this article. Please comment.

Original content Bob DeMarco, the Alzheimer's Reading Room