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Death and Dying - Dealing With The Restless Patient

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How to deal with the restless patient

Sadly, I know of what I type - as I write this, I'm watching my 95 year old Mom, Gertie, entering the last stages of life on earth - that stage being dying. As she lies in her hospital bed in my living room, I've learned much about dealing with the restless dying patient. And, there's much to learn.

I hope that by writing this Squidoo article, I may help others who follow in my path understand this process and learn from my tips. My Mom was quite vital until just 10 days ago so it's been a rapid education on dealing with a dying restless patient. I hope to shorten the learning curve for others.

I'm writing this article on Feb 9, 2012 as I sit next to my Mom so it's a bit of a different perspective than my normal musings which are usually more targeted to a theme. I plan on sprinkling real life examples throughout so you can get an idea of what an hour or two (until I finish this article) in a caregiver's life is like when dealing with the dying loved one.

Please read my accompanying article: When death looms - the signs and symptoms of the last moments on earth.

At the very end of this article (scroll waaaay down), there's links to some of my other senior citizen caregiving articles. Or, click to see my A list of all of my care giving articles.

Update: Feb 10, 2012. Mom spent a bit of a restless night so I was on the phone with Hospice a few times talking about medication. Quite sadly, I got the flu yesterday but I think it's the 24 hour variety (I hope). We're hanging in there - Mom is one tough cookie and will leave us on her timeframe and that is that.

Update:Feb 11, 2012: Mom is in the last stages today. We hope she makes it through today though as today is my nephew's 30th birthday. Tomorrow would have been my sister's 59th birthday and that seems like a much better day for me to let her go. She's resting peacefully with no pain.

Update:Feb 14, 2012: We're still here. This woman is not in any hurry although she's still in no pain. She remains a joy as she comes out of her comatose state once in a while and beams me her beautiful style. Her body is shutting down so it's not long now though. I'm praying she will rest in peace - I know she will.

Final Update: Feb 15, 2012: Mom died this morning at 7:11am. Now, to those of you who follow my blog, you know that Mom, Dad and I are gambling folks so I found the time comforting. She died very peacefully surrounded by Elizabeth (an excellent caregiver), brother Mike, friend Sharyn and myself. A sense of relief followed - relief that she's no longer struggling just to exist. She will be missed greatly by all but I still have a very strong feeling that she's here with me. And, that's where she will remain. In my heart forever.

Update Feb 19th: I moved the comment section of this article to be right below the introduction. Normally, the comment section would be at the end but I found it difficult to scroll down this article a few times a day to see the comments. Pictures of my Mom's sweet face make me melt. So, please leave comments if you choose but don't feel like you have to. Thanks. Lori

Update Feb 24th: I am amazed at the number of people who have given me beautiful comments. I'm also amazed that life seems to be going on as well as can be expected. Mom's death was not tragic by any means but the loss is still here and will be here for a while. Marianne and Steve (2 great friends of mine) sent me a wonderful gift - a bereavement lamp. I wrote an article about it if you're interested: Bereavement gifts - a beautiful way to remember those who have passed.

Was this article helpful in any way?

I've had a few people comment that they can't believe I've kept writing through the challenges we're facing right now - I can't stop. Writing has been a passion for a few years now and gives me some sort of release from my daily life.

Please leave me comments. I always read them to Mom and, sometimes, even now, she grins.

  • OliviaDaughter May 31, 2012 @ 4:12 pm | delete
    Really good info, my mother passed in 2010. I miss her. Good job with your mom.
  • Jennifermarie May 29, 2012 @ 10:58 am | delete
    The article is going to be very helpful in the month??? to come.
  • Jennifermarie May 29, 2012 @ 10:58 am | delete
    The article is going to be very helpful in the month??? to come.
  • Carolyn D May 22, 2012 @ 4:01 pm | delete
    I'd hoped for more on dealin with the restless patient ~
  • gottaloveit May 23, 2012 @ 8:00 am | delete
    I'm sorry you didn't find the information you were looking for Carolyn. I only wrote what I was familiar with and, not being an RN, this article is a personal glimpse into how I dealt with my mom, the restless patient.
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This is SO the truth for me 

A goodbye to Gertie's Galavants

Update 3/30/12:

After Mom's death, I came to Key West for rejuvenation - the last months were fairly difficult for both Mom and me. In looking back, I'm grateful that I had that special time with her and even more grateful that I documented a lot of the moments in my blog Gertie's Galavants - Travels with a 95 year old . I decided to write my last post and have closed the blog but please go stop by and read a few of our escapades. We did have some fun.

My darling boyfriend had my blog turned into a hardback book - 400 pages! It's a much cherished read these days.

My gorgeous mom - she is really really missed 

This Squidoo article won a purple star

I am so humbled that this article was selected to be given the coveted purple star just the day after I published it. The purple star is given to those articles the powers that be consider above par. Thanks to all of my friends who must have read it. My online friends are so supportive and I so appreciate you guys. Much love. Lori and Gert.

A few good books on death and dying

I've always been a fan of being armed with the best education on any subject in which I'm interested. The below are books that have helped me understand the process of death and dying and caregiving (I've been Mom's primary caregiver for 5 years now).
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Favorite pictures of all time

Click on any photo to enlarge and see write up.

Mom and rescue dog Rita have a special bond

Mom and rescue dog Rita have a special bond

Mom and rescue dog Rita have a special bond
Taken 2 years before Dad died in Laughlin on a windy day. She was leaning against him for a shield from the wind - the story of their lives.
Mom and Rita again.
John, me, Bobbi and Gert enjoy a happy hour.
Just a wonderful picture.
She was never far away when I had a beater full of cookie batter around.
Gizmo hitches a ride.

Death and dying - dealing with the restless patient

#1: You'll learn a new language

Mom in hospital bedSimilar to learning a foreign language, I've learned to interpret my Mom's gutteral sounds into something I can recognize. Those dying might lose the ability to speak for themselves so your job is to be an advocate for one who can no longer be an advocate for themselves. Sometimes, this means educating visitors about the symptoms they might see, such as restlessness, incomprehensible words, a far fixed glaze.

I spoke with my wonderful Hospice nurse, Sonia, recently about the fact that Mom almost always says "No" to every questions. An interesting side story here is that, when I was 2 years old, I was hospitalized with the measles, mumps, and chicken pox all at once (ugh - yes, I do have memories of this traumatic time, albeit faint). Anyway, I was in the hospital in June on my 2nd birthday, and the nurses all wanted to give me a small party. They'd ask if I wanted a party and "No, No!" was always the answer. My nickname at GW Hospital in DC was "Little Miss No-No." Little did I realize then that life is a cycle and I would be dealing with my own "Little Miss No-No" 52 years later. But, I've digressed...

Anyway, Sonia mentioned that Mom is living in a sort of twilight state in which her mind is dreaming. So, she might blurt out words or full sentences that she's dreaming about. I noticed this the other day when she sat straight up in bed and blurted out "Gertrude is WHITE!" Sharyn and I did the mature thing and collapsed in laughter. Eh, ya gotta have some fun. Read more about this episode in my blog post Gertie-isms are still funny.

The whole rambling point of this section is that those dying might focus on a single word which is generally "No." So, any question you ask them might be answered in "No" but that's not necessarily what they mean. Your job is to interpret what they really mean.

My Mom might say "No" to the question "Do you want coffee" (her favorite) yet she'll purse her lips as though sipping from a cup. This means, to me and other caregivers who know her well "I'd like a sip."

So, be prepared to learn a new language - the language of the dying. It's actually a pretty interesting language if you're open to it.
dying

My Mom has always had the most caring hands 

Death and Dying - Dealing with the restless patient

Lesson #2: Keep your patience!

death and dyingThe next thing you need to know about dealing with a dying restless patient is to keep your cool. It might seem like it's an endless loop you're living in - sort of like the movie Groundhog Day. For instance, here's a short idea of what 5 minutes in our lives is like right now:

Mom: Gets fidgity - sits straight up in bed and yells "Help!" (Note: I'm sitting next to her)
Me: Gets up and straightens the bed covers, readjust the hospital bed to a different position, talks reassuringly to Mom, asks her if she needs anything (a garbled "No" is the answer). Asks is she's comfortable (a garbled "No" is the answer). Readjust the bed again, push her gently into the pillows surrounding her. Mom quiets. I go back to my chair and continue to write this article.

30 seconds passes.

Mom: Gets fidgity - sits straight up in bed and yells "Help" - you see where I'm going here.

Things to remember:

1. It's not her fault. My Mom has always been the most amazing person to care for - she's always been more concerned about my wants and needs than her own. This last phase of dying is just her body reacting to changes. Her kidneys are slowing, her heart rate is abnormal, her pulse thready. These are physiological changes to which her body is reacting.

2. It's not your fault. You're not being remiss in smoothing the bed covers, you're not being remiss in adjusting the hospital bed. It's just what it is. Just get up and do it again.

Life with Gert (and Joe)

Some of my favorite pictures

I bought this red hat as a joke having no idea how adorable she'd look in it.

I bought this red hat as a joke having no idea how adorable she'd look in it.

I bought this red hat as a joke having no idea how adorable she'd look in it.
This picture was taken on their 65th anniversary. Dad died 10 months later.
Indian poker always cracked us up.
A sweet picture of a gorgeous woman.
Motorcycle mama.

Here's some items that might help with those who are restless in bed

When I was growing up and couldn't sleep, Mom would rub alcohol on my back and then apply a generous amount of Johnson's baby powder. This almost immediately relaxed me. Although I don't want to chill Mom with an alcohol rub, there are a few things I've found that do help when she is particularly restless. Some are below.
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Death and dying - dealing with the restless patient

Lesson #3: Get Hospice help!

hospice and death and dyingI can't stress this point enough - Hospice help can make the difference between you losing your mind or not. We started in on Hospice 7 months ago and I've never been happier. Instead of second guessing every single decision I've made, I've had a telephone number to call at any moment of any day. I've frequently found that Hospice has confirmed that my first instinct was the right, and this has furthered my confidence in dealing with new situations.

During these last days, I've turned to Hospice to help me deal with learning how to change the hospital bed (Mom is no longer able to get up), change and clean her, and prescribe medication.

For more information about Hospice, check out my article Choosing Hospice - is it the right choice?.

Note: the picture is of my gorgeous Mom just last week after her very first Hospice administered bed bath. Amazing woman.

More favorite pictures of our journey

Mom at her 93rd birthday party.

Mom at her 93rd birthday party.

Mom at her 93rd birthday party.
Bobbi, mom and I attended a friends wedding a few years ago. We didn't mean to color coordinate!
John, Mom and me. Neither Mom nor I could have survived this journey with the good humor we've managed if not for the most adorable, wonderful man in the world.
Mom at the cruise port of our Cruise to Nowhere Cruise....
Got crabs? The woman will eat every single crab claw around.

Death and Dying - dealing with the restless patient

Lesson #4: Ensure your dying patient is in no pain

death and dying and hospiceLuckily, my team of excellent caregivers and I have managed to keep Mom totally pain-free from bedsores or any kind of ailment that might afflict the bedridden, including pneumonia. The Hospice doctor who oversees her care prescribed two drugs to help us do just this: 1) Morphine and 2) Haloperidol.

Most people think that morphine is for pain but that's not exactly true. In the dying, morphine not only might relieve aches and pains but it also relaxes the patient and allows breathing to be less strained. Haloperidol is a medication that relieves anxiety and quiets Mom. In fact, as I type this, I just administered .25ml (a teeny weeny bit) of both drugs and she is resting much easier in bed. In fact, she's way more relaxed than I am!

Since I'm writing this Death and Dying - Dealing With the Restless Patient article in real time, I'll give you an idea of what just happened:

Me: Sitting here typing
Mom: Sits straight up in bed and yells "Lori!"
Me: Jumps up and runs to the bed. "What?" No response but a far away glaze. "Mom - what do you need?"
Mom: Comes out of the glaze and focuses on my face - "What, Sweetheart?"
Me: "Mom, what do you need?"
Mom: "Sheep!"
Me: "Sheep? You need sheep?"
Mom: "Yes"
Me: (thinking back to Lesson #1 here about learning the new language). Gets an idea. Aha! "Mom, do you see sheep?"
Mom: "Yes"

A bit of background. Mom and I have both been insomniacs throughout our lives. Mom taught me to count sheep jumping over a fence when I was very young to help my mind relax. To this day, I count sheep. Sadly though, these days, they're those stupid Sealy Posturpedic cartoon sheep. Damn. Anyway, back to my story:

Me: "Mom, do you see sheep jumping over a fence?"
Mom: "Yes"
Me: "Ok, let's count them together. One, two, three...she's out by four.

Please check out my article Helping the bedridden. I've learned so much in the last 10 days that I need to update this article but it will get you started.

And, here's an article about Pneumonia symptoms in the elderly which might help you too.

Some more items to help with a bedridden patient

A friend of mine's Uncle died in his favorite recliner, open book on his chest with his dog in his lap - if you ask me, he way won the game of life. But, for the majority of us, that's not how death will come. The below items have helped me deal with my bedridden Mom.
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Death and Dying - dealing with the restless patient

Lesson #5: Never leave them unattended

Now, it's impossible to never leave a dying restless patient unattended but try to at least monitor their movement. Someone who has been bedridden for months can suddenly "make a break for it", crawl over the hospital bed's bed rails and be on the floor before you utter 'Damn!"

John bought me a monitor that has a video to it so there is now a camera trained on Mom every minute. The monitor is one that I can carry around although I'm generally only in the kitchen for a few moments if there is no other caregiver in the house. Regardless, as I prepare her next cup of coffee, I always have one eye on the monitor so I can make a mad dash for her if I have to.

And, here's something really important: If your restless patient is in a hospital bed, I don't care how long you're out of the room, put the bed in its lowest setting to the floor before leaving him or her alone. This way, if they do make a break for it, they'll already be almost at floor level.

Always have a good baby monitor around

I prefer the video monitor which also vibrates or lights up if there is a noise in the room. A regular baby monitor doesn't work so well for me as there's a lot of ambient noise in the living room where Mom is (how can there not be with 6 dogs, a cat and a bird around?). The below are all highly rated monitors so any would be great to help in your care giving role. Click on any picture to see pricing and specifications.


Summer Infant Day & Night Baby Video Monitor with 5" Screen


Motorola Digital Video Baby Monitor with 2.8 Inch Color LCD Screen


Summer Infant Baby Touch Digital Color Video Monitor

I am my 95 year old Mom's caregiver

Very sadly, I expect that will be the last time I write those words. Mom is just moments or, at the most, days away from her final rest which she so richly deserves. She and Dad gave their children and grandchildren amazing lives and, for that, I can't be more grateful. I'm not sure what my next chapter entails but I think it includes going off into the sunset with the best man on the face of the earth by my side and there will be beach - Key West to be exact.

Death and Dying - dealing with the restless patient is my 134th Squidoo article but won't be my last. I'll be back.
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Here's some other of my senior citizen articles that may help you

If you're a care giver like I am, knowledge is power. Please feel free to read, comment, and forward any of these other articles along to anyone else you know who might be in need.
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gottaloveit

I used to spend most of my days caring for my adorable 95 year old Mom, Gertie; she died peacefully in my arms Feb 15, 2012.

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