May 252015
 

As a degenerative physical disease such as myositis progresses, our coping methods also progress. In the beginning there are inexpensive physical aids such as canes and walkers and often the help of a spouse or family member. Then come more expensive pieces of equipment such as wheelchairs, hospital beds, adaptive toilets, lifting mechanisms and modified vans. Next may come home renovations or moves to homes with more appropriate layouts. Next we may hire caregivers from home health agencies. Finally comes the really big decision of whether to enter a facility. Recently I have noticed more discussion about assisted living or skilled nursing facilities among the myositis community. I can only speculate that as awareness grows and diagnoses increase in number more of us have advanced to the point we can no longer live independently.

It is difficult to write a general article about the need for assisted living or the experience of residing in such a facility because there is no federal standard. It has been left to each state to create its own definitions and requirements. In some states such as California, assisted living facilities may approach the level of skilled nursing in the amount of care they are allowed to provide. In other states assisted living can only provide minimal assistance with activities of daily living. For those states with more restrictions, skilled nursing may be the only option. Of course that means more expense and less freedom.

I wrote a series of blog entries on the subject of assisted living and much of the content is still valid especially for those living in a state such as California. I have provided links to each of those blog entries below. I am continuing to do research on the subject and someday I might turn this into a book. For now I will expand on the series of articles I have already written, with special emphasis on the unmet needs of the physically disabled.

Follow these links to read more:

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

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 there 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

Since I wrote this article, my circumstances have changed. I was able to find an assisted living facility, Sunrise at La Costa, that was willing to put up with my non ambulatory status and ceiling lift. I wrote about my new residence in this blog article. Since living there I have learned that even one of the best facilities in the area leaves a lot to be desired for providing intellectual stimulation to someone who has no cognitive deficiency. (Well, not beyond the usual deficiencies I have always had, that is.) I will continue to write about this subject because I think it is important to hundreds of thousands if not millions of people in this country and around the world.

Index for series of articles about assisted living.

Introductory article plus updates.

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

Jan 212011
 

The author photographing his favorite room.

The author photographing his favorite room.

At the risk of challenging the squeamish or offending the proper, I have decided to share my bathroom with the world.

If you are disabled, you often can appear almost “normal” when you are out and about during the day. After all, you’re dressed, you don’t stink (hopefully), and you move from place to place quite briskly with the aid of your $30,000 wheelchair. However, most people never get to see you when you are at your most disabled: when you are dressing and undressing, getting into or out of bed, or when you aren’t using the bathroom. Today, I will explain the extraordinary measures I have taken to make my bathroom a happy place.

We bought our present home about five years ago, shortly after my wife had been diagnosed with myotonic dystrophy. We realized that she would no longer be able to climb stairs, and since I hadn’t been able to do that for many years, what was the point of remaining in a two-story condo? Housing prices were still very high back then, so we were somewhat limited in our options.

Floor plan of inaccessible bathroom.

When we bought our home in 2006, it still had the original master bath as shown in this floorplan from a 1964 brochure.

We settled on Seven Oaks, a senior citizen development in the Rancho Bernardo area of San Diego. Our home had been built in 1964, and the bathroom had been left undisturbed – a monument to the shortsighted thinking of home builders of the time.

Modified ADA bathroom plan.

A few modifications turned an ancient bath into one that is modern, and completely accessible.


My first task was to redesign the bathroom in a manner that would allow me to get into it in a wheelchair and actually accomplish some of the functions one typically performs there. That redesign turned out to be simpler than I had imagined, once I realized that all I needed was the ability to close the door behind me and to transfer sideways onto a toilet or shower seat. In addition, I needed to be able to get close enough to the sink to be able to run the faucet and expectorate toothpaste. You can see my solution in the floor plans accompanying this article.

When we moved here, I was still able to stand, provided I held on to something with all of my might. Since my illness is progressive, I realized that wasn’t going to last very long – actually it only lasted about five months after we moved into the house. So I designed the toilet and shower seat to be high enough that I could slide from them back into my wheelchair when it was at its lowest level. My wheelchair has an elevating seat, so I could get into either of the other locations by raising the wheelchair high enough to slide downhill.

ADA Shower bench.

My shower bench is 23 inches high (like the toilet).

The sink was an easy matter to take care of. I simply had the entire counter and cabinets removed and then replaced the sink with a suspended model from Kohler.
A sink suspended above the floor.

My suspended sink lets me roll right up for easy access.


Those who know me well know that I am always thinking ahead. So I realized that even sliding downhill would eventually become too hard for me to accomplish. As a matter of fact, I am reaching that point right now.
An overhead lift at the opening to a shower stall.

To accommodate my overhead transfer lift, I had to design my own shower curtain. Here it is in the open position.

So I had an overhead lift system installed in the ceiling of the bathroom. Now I could use the electric lift to pick me up and then glide effortlessly across the room, right? Not so fast. There was the inconvenient matter of the shower curtain rod. It had to go. So I have been spending the last several days building a new kind of water barrier that could be moved out of the way of the lift and then replaced once I was seated in the shower.
Shower curtain stretched across shower stall.

Here is my custom shower curtain ready for use.


Several days? Yes, because my arms have become so weak that I can no longer hold an electric drill with any substantial security. In fact, I can’t even pick up what most of you would think of as an electric drill. I use one of the ultracompact lithium ion models which are not powerful enough to penetrate the 56-year-old wood surrounding my shower stall. But eventually I managed to get the various components in place.

The toilet. I have saved this for last, because I know most people don’t like to talk about this particular piece of equipment. However, for the disabled, it is almost always on our minds. When will we need one? If we find one, can we get on it? More importantly, can we get off? Reasons why I rarely travel more than a half hour from my home. Toilet mounted on ToilevatorYou see, my toilet is my friend. I had a Toilevator installed beneath the toilet, which raised it 4 inches – enough to make transfers convenient. I also added a BioBidet 1000 seat.

BioBidet 1000 toilet seat.

My BioBidet 1000 toilet seat gets the day off to a fresh start.

This wonderful device almost eliminates the need for conventional hygiene (which with fingers that don’t bend or grasp is almost impossible anyway) and it makes me look forward to the beginning of each day.

I hope none of you have been reading this over dinner.