Bathroom

Need we say more?

Oct 192014
 

Some more advantages to using an overhead lift together with a hygiene sling.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

In addition to lifting someone safely and easily, an overhead lift offers some additional benefits. You might compare it to taking your car in for an oil change. Just like they put your car up on the rack to have easy access, the caregiver also has easy access to otherwise hard-to-reach areas of the person being cared for. Besides post-toileting hygiene, this helps with skin checks, skin care and changing underwear.

Changing underwear? Here’s how: while the patient is being suspended by the lift, pull the underwear around the bottom and toward the knees as far as possible. Lower the patient back down to a seat. Unhook the leg straps from the overhead lift and then bring them back up, passing them between the underwear and the seat. Lift the patient again and let the shorts fall off. Put a clean pair over the feet and legs and lower the patient once again. Unhook the leg straps from the lift. Pull the shorts as far up as they will go. Put the leg straps on the lift again, being sure they are on the outside of the shorts. One last time, lift the patient and pulled the shorts the rest of the way on. Lower the patient back to the seat and the shorts have been changed. (The process takes a lot longer to describe that it actually takes to accomplish.)

I designed and sewed pants that I could put on by laying them on the chair and  fastening them around me.

I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

What about the outer wear? Some people use open-bottom garments that are specially made for wheelchairs. Personally I prefer the type of pant that I designed which simply lays flat on the wheelchair seat and I am lowered onto it. Then it Velcros in three places – along the legs and down the front to form a complete pair of shorts that look exactly like a regular garment.

If you are not yet convinced, maybe a demonstration will help. In the interest of public decency I decided not to be the model for this brief video.


Jeff Conner, President and owner of Pacific Mobility.

Jeff Conner, President and owner of Pacific Mobility.

Special thanks to Jeff Connor, President and owner of Pacific Mobility, who recently presented me with a new overhead lift mechanism, courtesy of Prism Medical. He also brought along his panda to help demonstrate the advantages of an overhead lift and a hygiene sling.

Oct 012014
 

As you may know, I recently launched a series of blog posts discussing the benefits of overhead lifts and questioning why assisted-living facilities were not using them in this country. To gather data I had a meeting with the owner of Pacific Mobility (installed my lifts) and representatives of Prism Medical (manufactured my lifts). during the course of the meeting, someone mentioned that Sunrise Senior Living had a policy against lifting residents without mechanical assistance.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

After the meeting I looked them up and discovered Sunrise was one of the the original assisted living programs for the United States and has grown to about 300 facilities in the US, Canada and Great Britain. Their founders were from Holland and their story is worth reading. You can find it on the Sunrise website.

Sunrise has facilities in the San Diego area that I had previously ruled out because of the locations. However I decided to give Sunrise at La Costa a call. I learned that they that do have a policy against most manual lifting however they use floor lifts to accomplish it. So of course I told them all about the advantages of overhead lifting and directed them to this site. After watching the video and reading my previous post, they decided to ask regional management for permission to give it a try. Hallelujah! They agreed.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

I learned that living here would cost me nearly double what I have been paying at Huntington Manor. But since I had made such an issue of finding another facility that would accept me and my lifts I felt I had no choice but to make the move. I’ve been here several weeks now and am truly enjoying this new environment. For one thing, I am only a 30 minute wheelchair ride from the ocean. For longer trips, the local bus stops right in front every half-hour seven days a week. Also, because I am disabled, I get to ride for free on both the bus and the local rail transit.

In an attempt to make my relatively meager funds hold out, I have taken on two freelance clients. Fortunately since my background is in marketing consultation and writing, I can accomplish both mostly online with the aid of voice recognition.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

More news to lift my spirits: Last week, Jeff Conner, the owner of Pacific Mobility stopped by with a free lift, courtesy of Prism Medical and installed the lift along with brand-new batteries.

By the way, this does not mark the end of my series on the advantages of overhead lifts. There are still thousands of assisted living and skilled nursing facilities that have not seen the light. Perhaps even more importantly there are countless caregivers trying to transfer and transport their disabled loved ones without the aid that an overhead lift could provide.

Jul 292014
 

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.


So why aren’t more facilities using them?

A few weeks ago, I decided to find out. It seems that the answer may be very complicated, although, like many questions, money and politics may be at the root of the issue. In the following posts I will share what knowledge I have been able to gain through talking with facilities, manufacturers, and installers. For this first post, I simply want to make everyone understand how simple the process of doing a transfer with an overhead lift can be. Those of you who have followed my blog through the years will recall the nightmare experience I had at a local hospital when they tried to transfer me with brute force. I weigh 220 pounds and it would take a lot of brutes to get me out of my chair.

So please watch the video below with that in mind. It is only four minutes long, because that is as long as it takes a single caregiver to smoothly and safely pick me up from my bed and put me in my wheelchair.

However, I know there are many other factors holding facilities back. Besides money, some are concerned whether it would be safe to install a lift within one of their rooms. I will show the many types of installations and explain that there is one for almost any situation. Others think it would be an expense that they might never recover. There are plenty of case histories to put that fear to rest. Then there is the misperception that most facilities don’t use overhead lifts. While this may be true in California and many other states, it is definitely not true in Europe and Canada. What do they know that we don’t? That will be the focus of one of my articles.

Jun 102014
 

Ceiling Lift installed in my room at Huntington Manor

The owner of Huntington Manor was willing to have my ceiling lift installed.

I am about to begin some posts on a subject that has been the source of puzzlement to me for some time.

Overhead lifts are widely used throughout Europe and Canada where studies have shown they dramatically reduce resident and caregiver injuries. They also cut labor costs since transfers that normally require two or more caregivers are now safely accomplished with one. Despite this information, the assisted living industry in the United States appears to be intractably opposed to overhead lifts, or for that matter any kind of patient lifts, within their facilities. Asking around I have found that many of the major chains have forbidden facilities from installing these systems. Instead they require the caregivers to do the lifting and repositioning. Some claim that overhead lifts would increase labor costs and lead to more injuries and lawsuits, despite the evidence that the opposite is true.

I am trying to determine why there is such opposition. I’m also trying to learn if the problem is as widespread as I believe. Today I heard from a facility that is part of one of the largest chins in the country. According to the person I spoke with, the decision came from their risk management people. (Unsure whether it is an in-house department or a separate risk management company.)

I need your help. Please comment on this post or my Facebook entry that I have linked to this post and let me know anything you have observed on the subject. I plan to publish the first article around the beginning of next week.

Topics will include:

An overview of the issue.
The types of modern overhead lifts available and how they work.
The myths and truths about overhead lifts.
Examples of the use of overhead lifts in other countries.
Exposing either the ignorance or the lack of concern for patients and caregivers that hinders their use in assisted living facilities in the United States.

If it turns out to be obstruction by either risk management or insurance companies I will address that subject as well.

I will deeply appreciate any help you can give me.

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Nov 182013
 
Read more about my drinking problem below.

Read more about my drinking problem below.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.


Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.


Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

Jun 282013
 

Dear bidet, you have no idea how much I have missed you for the past 24 hours.

After struggling with inclusion body myositis for more than 17 years, it was a bout of constipation that finally sent me to the hospital. After 17 days, I owed too large a debt to my toilet to ignore the problem any longer.

I checked into Scripps Green Hospital late in the afternoon. I was in my Permobil C500 power chair, but I was forced to abandon that for a gurney. The hospital staff seemed shocked when I told them that I could not stand up and transfer, they would have to find a way to lift me. A Hoyer lift I suggested. They shook their heads. “We will get a lift team,” one orderly said.

Silly me, I expected to see a few rejects from the San Diego Chargers show up. Instead, it appeared that their lift team consisted of anyone who was not on break at the moment. I tried to explain that I had contractures on my left arm and left leg and that I would be no help whatsoever, not because I did not want to, but because I could not. Nevertheless, they each grabbed a limb and said “one, two, three!” and lifted. I have a fairly high tolerance for pain, and even when something really hurts I try not to make too much of it. I literally screamed out loud at the top of my lungs. But on a positive note, they didn’t drop me to the floor. This process was repeated when they transferred me to the x-ray table, then transferred me back, then to my final destination––a bed in room 466.

At last! Oh how wrong I was. You see in order to cure my bout of extreme irregularity they were going to administer “GoLghtly” which is mostly used to prepare for a colonoscopy. It makes you Go, but certainly not Lightly. In my case it was a way to force the issue. After drinking a couple of quarts of the stuff, I was ready for the next phase at about 3 am. A nurse’s aide came in response to my call button (eventually) and I explained what was about to happen. She extended her arm and wondered if I needed help to the toilet. Obviously the second shift had not been told about my condition. When I told her that I could not walk, stand, or even roll from side to side, she left quickly in search of help. Help consisted of two more aides and a bedpan.

Their technique was simple, but brutal. They would shove me to one side of the bed, rolling me in the process, then put a very uncomfortable plastic thing beneath and roll me back the other way so that I was perched on top of it. Now my pain was complete. In order to shut me up, they brought in several more pillows and placed them in areas that bothered me the most. Of course the entire process had to be repeated to remove the pan. And both processes were repeated five more times during the night.

By morning, I was declared “fixed” and a nurse asked if I would like to have breakfast. You would not think I could have an appetite after all that, but since I had not eaten for nearly 24 hours, I let them bring it to me. I don’t need to tell you what hospital food is, but fortunately it was not possible for me to eat any of it. My dysphagia means I must be sitting upright but the hospital bed wouldn’t take me to that position.

“Can’t you just sit on the edge of the bed with your legs dangling over the side?” the nurse asked. Once again I had to explain about having no upper trunk support. So they put the breakfast on the over-bed table and shoved it up close to my face. Of course I could not raise my arms high enough to even pick up a fork, let alone get something to my mouth. When the nurse returned and saw that I had not eaten anything, she offered to feed me a few bites. A few bites was all it took to send me into violent coughing spasms whereupon she promptly decided I needed a consult with a respiratory therapist and a speech therapist. For that matter, why not also have occupational therapy and physical therapy? (I was on Medicare with a good supplement after all.)

So, for the three hours before lunch, I was visited by all of them plus a case manager, charge nurse, resident doctor, dietitian and nutritionist. Then came lunch and once again they tried to feed me, and once again it was nearly impossible. By then they were ready to fill out my discharge papers and send me home. But there was one last minor detail. They had to get me out of the bed and onto my wheelchair. This time they did get a Hoyer lift, but none of them had used one before, so it was a part scary/comical procedure that lasted for the better part of half an hour and ended with me kind of in my wheelchair.

Now I am back at Huntington Manor, sitting in my very comfortable Permobil, secure in the knowledge that soon my two caregivers will use the overhead ceiling lift to painlessly lift me from the chair and place me in my bed.

I had asked one of the nurses why the hospital was not better equipped to handle people like me. Her answer was that they had all kinds of patients, not just people like me. Of course that is true, however local grocery stores also have all kinds of people shopping there, but that does not prevent them from having wide unobstructed isles, handicap parking out front, and automatic doors. Time and again I read of people complaining about the inaccessibility of healthcare facilities, yet nothing is ever done about it. if I were a little bit younger I might take this up as a cause. It is not that I am too old for the work, it is just that I know I would never see any progress during my lifetime.

Mar 202013
 

A handicap-accessible bathroom.

Every time I explore other assisted living facilities, my bathroom always draws me back to Huntington Manor.

The following is a comment I posted on another blog site. It is in response to an article written by Martin Bayne on Dr. Bill Thomas’s ChangingAging website. Mr. Bayne finds himself in a situation similar to mine. He has begun writing articles advocating for the plight of those of us who need assisted living and for whom their are no satisfactory options. I share his concern and am hoping that I can find a way to add my voice.

I am 72 years old, nonambulatory due to a rare disease (inclusion body myositis), and am living in an assisted living facility. It took me a lot of searching before I could even find one that would accept me. Most said that they would not take care of someone who wasn’t able to stand or walk. My “neighbors” are almost exclusively people 20 years older than me and most are incapable of carrying on a conversation. (no fault of their own, disease and age have damaged important cognitive functions.) The caregivers here are very conscientious, but like most, they are overworked. I am fortunate that I can be my own advocate and thus I get very good treatment.

Every so often, I will check the surrounding area of Southern California to see if something new has arrived that might provide a more stimulating environment. At the end of each search I always return to my room and feel grateful for what I have, because it is fully wheelchair accessible including an enormous roll in shower. Most of the facilities have tiny tub-showers with fiberglass enclosures and little built-in seats that could not possibly accommodate me. As for their “activities” the larger facilities seem to focus on the needs of the least common denominator and provide “sing-alongs” featuring songs from the 40s, bingo, and various childish games. For this, they charge anywhere from $5000 – $7000 per month. By comparison, I like to spend my time studying computer programming via the Stanford University lectures on iTunes. (Or writing this blog.) I know that I am not the only person who is older or disabled but also has a continued desire to learn.

It is obvious that we need a new paradigm for the care of an aging population. As we live longer, more and more of us will develop chronic illnesses that reduce our mobility or our cognitive facilities. In my own case, the ideal solution would be to live in my own home with visiting care givers to get me out of bed and shower and into my wheelchair in the morning and then get me back into bed at night. For most of the day I can be independent except for meals, which I could obtain at a local restaurant or my local microwave. The problem comes from not knowing exactly when I might need help. If I were in bed at night and an emergency arose, what would I do? If, during the day, I dropped something important and couldn’t pick it up, how would I get help? Right now, I can press the pendant that is always around my neck and someone will be around to help me. At home alone there is no such system. The cost of round the clock in-home care is prohibitive and would be a terrible waste of human resources anyway.

My concern is that the movement of for-profit corporations into this field means that any rational and humane solutions will be forever blocked.

Mike Shirk

Aug 182011
 
My shorts with seams removed, ready for hemming, velcro, etc.

My shorts with seams removed, ready for hemming, velcro, etc.

For the past few years, putting on pants has been an hour-long process. Because I can’t stand, I would start the pants over my legs, then return to bed to finish getting them up. By the time I was through pulling, trying to roll, and cursing, I was almost too exhausted to get back out of bed.

Then a few months ago, I lost the ability to slide into bed and started using a ceiling lift. Don’t know why it took me so long to think of this before, but I simply ripped out the seams of a pair of jeans shorts at strategic locations. I removed the stitches along the inside of both legs and then up from the crotch to the beginning of the zipper. Then I removed the zipper itself and replaced it with Velcro. I also added a bit of fabric to the inside of the legs and put Velcro there. I added a fleece panel for comfort and privacy.

My shorts, waiting for me to drop in.

My shorts, waiting for me to drop in.

Now I no longer have to return to bed to dress.  I simply lower myself (overhead lift) to the wheelchair where I have the pants laid out flat and then close them up. Takes a couple of minutes instead of an extra hour. I also no longer have to struggle with pulling my pants out from under me when going to bed or using the toilet.
Wearing my shorts

Not a fashion statement - more like a declaration of independence.