Lesson 1385 – Hospice – a list for the caregiver

 

A few days ago I made a list of things that would help and/or be useful to someone who is in a residential hospice. Now I’d like to look at a list for those giving care. I know that my situation was different, most people never stay longer than 2 weeks, but as you know my mother lasted 8 weeks at hospice before she died.

That was 8 weeks of me traveling down to stay with her four days out of the week (and there was one period where I was there for 9 days straight because I had spring break.)

I am forever glad that I was able to do this, but it took its toll on my body. You know when on the airplane they tell you to put your oxygen on first telling you that if you are in charge of someone, you can’t take care of them if you don’t take care of yourself – (and then every nurse repeats this story to you nearly every day at hospice?)

It’s true.

While with my mother, I sat for hours and hours and when it was time to eat, I would grab a quick lunch (which usually meant a sandwich and fries) and return to my sitting. At night I’d return to my hotel and well, you can probably figure out what I did – absolutely nothing. A day at hospice doesn’t exactly psych you up for a vigorous workout in the evening.

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Lesson 1380 – Hospice – A list of what to bring

I love lists. They are how I get through so much work every day. I’ve got some down time? Let’s see what’s on my list that needs to be done.

As anyone who has had a baby knows, there are plenty of lists of things to bring to the hospital – lollipops, tennis balls for back pain, and even baby nail clippers. You need a lot at the beginning of life.

And then there’s the end of life.

I haven’t seen too many lists about what you need to bring if you go into a residential hospice. But, as it turns out, there are a few things that can actually help the patient out. This is a list of items my mother who was ambulatory (initially she could walk down a hall and back) and lucid (at the beginning) really appreciated during her stay at hospice.

Lesson 1377 – Lessons learned from mom

 

 I delivered  these words at my mother’s funeral this weekend. 

 

I have some terrific memories of mom – which include the vacations we went on, the activities she encouraged us to do, and the independence that she always stressed from an early age.

I remember the vacations on Cape Cod, learning about how the glaciers formed the land, rolling down sand dunes, and picking wild blueberries for our breakfast cereal. I remember going to the Audubon society and learning about the different plants. Taking walks down the guided trails, ahead of mom but always knowing she was there, right behind me.

Mom taught me to appreciate nature.

I remember the injured birds we’d bring home, the abandoned mice, the ducklings, the rabbits, the turtles, the polliwogs, guinea pigs, gerbils, dogs, parakeets, and even a cat or two.  Mom always managed to make room for them at the inn.

Lesson 1376 – Hospice – 100% about the patient

 

I appreciate all the comments and questions about my experiences with my mother in a residential hospice. Many good points have been brought up and I plan to share the excellent information and discussions with all.

A few points, although my mother was confused at the end, (week 7 -8) she was completely lucid at the beginning. That’s right her mind was sharp but her body was breaking down faster than we could fix it. Here’s a case where dementia would almost be a blessing. It’s simply cruel at the end to have a clear mind with a broken body.

When mom was in the hospital (before hospice), there was a conference call between all her doctors. She had health problems 2 pages long, but it was her congestive heart failure that topped the list. At a point, a heart simply gives out – it’s what happens when you get older. Hearts don’t beat forever.  The docs had all unanimously decided that mom was near that point where her congestive heart failure would end her life. They offered residential hospice (because my mother lived alone and refused to go to anyone’s home.)

Mom actually wanted to go to hospice. She knew it was a well-run, beautiful and caring place.

“Does she know where’s she’s going?” asked the ambulance attendant as he helped transfer my mother from the hospital to hospice.

“Yes,” replied my brother. “She wants to go.”

“She wants to go? I’ve been in this business a long time and this is a first.”

It was because she was cognizant that I spent so much time with her at hospice. I didn’t want her to be alone when/if she figured out why she was there. She was weak, she needed oxygen, she couldn’t walk far, and she was in a fair amount of pain, but she was aware.

Mom could talk about politics, she wanted to know who was still in the race. She did word searches. She read the friggin’ newspaper every day. But she couldn’t (or wouldn’t) connect the dots that she was at hospice to die. Even though my Dad had died at that very same institution one year earlier, she, until the end, thought that she would be rehabbed and sent to a nursing home.

Was she in denial? Probably. Was she using classic avoidance? My magic 8 ball says “looks likely.” But you know what? That’s okay. I did nothing to correct her point of view.

Seriously, could you be calm about the fact that you are in an institution to die even though you read the paper and order a bagel and coffee every morning? Is it really necessary that you make that kind of acceptance? Would you be able to? Not entirely sure I could.

Lesson 1375 – Hospice – It may not be the end

 

There are different levels of hospice care. A patient is eligible for hospice benefits if she has an illness from which she will never recover. If it is determined that the condition is present and the patient is not actively dying, a hospice nurse would visit either the home or a nursing home for a prescribed amount of time to help assist with difficult tasks, like taking showers, taking a walk, or even getting the medication straight.

That “illness from which she will never recover” covers a lot of bases and it’s why you’ll hear stories of someone’s dad being in hospice for 6 months, or someone’s mom getting hospice care for years for her C.O.P.D. Some patients can live for a long time while receiving hospice benefits.

A residential hospice, however, is different. A patient is sent to a residential hospice facility if she has an illness from which she will never recover *and* it appears she will die within a few weeks. Residential hospice is not a nursing home. It is a place where people go to die comfortably. The average stay at a residential hospice is 2 weeks.

In fact, and this was an incredible shocker to me, if they can stabilize you, even though you are actively dying, you will be moved to a nursing home. I saw this happen many, many times.

Lesson 1374 – Hospice – One thing at a time

 

 

The life lessons from the flock are back.

As you know, I spent the better part of the last 2 months with my mother while she lived until she died at a residential hospice. It was my first introduction to such a facility and I learned so very much both from the experience and from just being with my mother.  I’m a writer and teacher. I give honor to my mother and this journey by writing about it so it can be shared with others – that you may learn.

The final update

 

During mom’s hospice stay, I sent updates out to the family and friends. I’m sharing this with my online friends because you have been so supportive throughout this journey. Every single message was read and appreciated. Thank you, thank you all. 

This will be the final update.

Mom/Teddie passed away yesterday at 12:55 p.m. April 28th with Larry, Sue, I, and many members of another patient’s (Nancy) family by her side laughing, joking and telling her that we all loved her. We’ve met many friends on this hospice journey and have discovered that in the end there is enough love for everyone.

Mom was comfortable until her last breath. She didn’t struggle. She simply slipped away when she was ready. She made sure to do it when the sun was shining, the seas were calm, and the birds were out and singing. Mom had told me earlier that she had always wanted to die on a warm sunny day and not in the cold of winter. She got her wish.

It is a testament to mom’s generous spirit that many nurses who had worked with her during her stay came in to say good bye and to give hugs. Word gets out quickly in that place. For one nurse, it was the first time she had ever cried for a patient. That speaks volumes about mom’s character.

Although she was in hospice, mom had a great last 2 months. She made friends, she heard music, saw art, smelled flowers, sat in front of the ocean sound, and shared (literally) buckets of candy with everyone. Mom laughed, watched her favorite shows, and even until the last few days wanted to know about the election results. She lived until she died.

I will be heading back to New Hampshire soon, but this time, instead of saying “Goodbye Mom, see you next week” and leaving her here, I get to bring her back with me in my heart.

We all do.

I wish you all peace and love. Go out and enjoy this fine day we’ve been given. Take care,

Wendy

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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

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