Death and Dying - Dealing With The Restless Patient
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.
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.
Update June 22: I'm strong enough emotionally now to restructure this article and put the comments back down toward the bottom. So, if you visit, please scroll all the way down and leave me comments. If you're here because you have a loved one in the same situation, I wish you all peace. Heck, I wish you peace anyway!
My new ebook - Senior Citizen Caregiving 101: Things I wish I had known
My new eBook is a result of my 5 years of caring for Mom. I spent a lot of time figuring out things for myself but you don't have to because I've written up 15 chapters of things I wish I had known. Come see what I have to say.
Favorite pictures of all time - Click on any photo to enlarge and see write up.Click thumbnail to view full-size
Come visit my new website
After caring for Mom all those years, I became an expert in identifying good gifts for senior citizens. And, in an effort to help others who trod in my path, I started up my own website called (surprise, surprise...):
If you visit my site, you'll probably find a lot of items you never knew existed but can make life much easier for both the caregiver and senior citizen.
Death and dying - dealing with the restless patient
#1: You'll learn a new language
Similar 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.
A goodbye to Gertie's Galavants
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
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).
Death and Dying - Dealing with the restless patient
Lesson #2: Keep your patience!
The 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.
My Mom has always had the most caring hands
Life with Gert (and Joe) - Some of my favorite picturesClick thumbnail to view full-size
Death and dying - dealing with the restless patient
Lesson #3: Get Hospice help!
I 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 this article on my website: 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.
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.
These bed suspenders clip to the bottoms of the fitted sheet and will hold it securely in place.
I'm not sure what I'd do without these large disposable washcloths - a quick swipe over Mom's face generally relaxes her. I plan on keeping a pack in the jet ski and on John's boat this summer too. They've got lots of uses.
I didn't buy one of these but really wish I had. We use small throw pillows on either side of Mom to keep her in place and prevent her from bumping up against the bed rails.
Never ever (!) underestimate the importance of a good quality sheet in the life of you or your loved ones.
More favorite pictures of our journeyClick thumbnail to view full-size
Death and Dying - dealing with the restless patient
Lesson #4: Ensure your dying patient is in no pain
Luckily, 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?"
Me: "Sheep? You need sheep?"
Me: (thinking back to Lesson #1 here about learning the new language). Gets an idea. Aha! "Mom, do you see sheep?"
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?"
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.
Even the bedridden should be exercised a few times a day.
These shampoo caps are fairly amazing. I've found though that they turn Mom's ultra white gorgeous hair a little yellow. I prefer to have Hospice use regular shampoo and conditioner on her.
Butt paste is a very necessary item in a care giver's bag. Shit happens...
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.
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.