Jun 282016
 

I was diagnosed with inclusion body myositis 20 years ago. Throughout this blog I have recorded the various stages of weakness and disability that I have experienced. I have always wondered how the story would end. Now I know. I hope this will help others suffering from my condition.

The past few months I have noticed the effects of my weakness to a much greater extent. Especially with respect to being able to hold myself upright when sitting, the ability to breathe, and most importantly, the ability to swallow. People have suggested a feeding tube however that would have meant moving to a different type of facility and a much lower quality of life. Therefore I decided that would be something I would never do.

Two weeks ago I woke up with pain in my left side that greatly restricted my ability to take a deep breath. I also seemed more congested than usual and attributed it to a cold. However after a week the cold had not gone away and I was spiking high temperatures at night. Eventually I decided I had to go to the urgent care.

At urgent care they took a chest x-ray and said I had aspiration pneumonia in three places in my lungs: upper right, upper left and lower left. I was immediately transported to the hospital where they began giving me their strongest antibiotics IV.

Their speech therapists evaluated my ability to swallow which was made much worse by the hospital bed that did not give me the lateral support I need in order to sit upright and swallow. So she said they would not be able to give me food or water. After two days the doctor came in and said I was not getting better and that I would never get better because they could not get nutrition into me. He suggested a feeding tube but added that even that might not be any difference. Of course I refused the feeding tube. He then told me my best option was to return to my assisted-living facility under hospice care. They would continue the antibiotics and I would be able to eat and have a chance to fight off the pneumonia. However he cautioned that under even the best of circumstances there was a good chance that this would be the end of my life. He was a very good doctor and went on to say that I had been fighting this inclusion body myositis for many years and that now it just might be time for me to stop.

I am back at Huntington Manor now and despite the antibiotics and being able to eat (although not wanting to) I am back to running high fevers at night which is a sure sign the pneumonia is continuing to worsen.

I am on hospice and they will keep me comfortable as I complete this journey. I have made many online friends over these years and I value those friendships deeply. I simply couldn’t leave without saying goodbye.

Apr 142016
 
Back where I belong.

Huntington Manor assisted living in Poway, California.

I recently returned to Huntington Manor assisted living after spending 15 months at a much larger, more expensive facility which I will refer to as “The Other Place.” People have wondered why I came back to Huntington Manor and, if I like it better here, why did I move in the first place? These are good questions and my answers may interest you.

Huntington Manor is a 27-bed assisted living facility located on the outskirts of Poway, California. My wife and I moved here in the spring of 2012 because it was the only place we could find that would accept my overhead lift system and was priced low enough that we could afford two rooms. My wife died a few months later but I remained here for another two years. I liked the location, had become friends with the owner, had gotten to know the staff well and enjoyed working on their website and blog.

Is this all there is?

My family felt that I was not taking advantage of some of the extra amenities that were available in larger facilities. So every once in a while I would check out a few of them, however I always got the same answer, “Sorry, but we can’t take care of someone as disabled as you and we definitely don’t want your overhead lifts in our facility.”

One day I was told about a place near the coast that might accept my physical requirements and my lifts so I checked them out. Like the other large facilities, they promised an extensive activities program, restaurant–style dining, frequent excursions, and several common areas where residents could mingle. When I asked about my overhead lifts, they said they would have to check it out with “corporate.” At the time I didn’t know exactly what that meant but I certainly do now. After several weeks they told me I was approved. But could I afford to live there?

Large assisted living facility

Could I afford to live this large?

Sticker shock.

Do you ever see those reports about assisted living that show the average cost by state and think “that’s not so bad.” It wouldn’t be if those were the actual costs, but sadly they are not. When the larger facilities publish costs or give them out over the telephone they are quoting the base rate for a room and the most standard care level available. (Smaller facilities are less likely to use this tactic.) There are very few people entering assisted living who could live with that amount of care. If you have difficulty transferring or walking or keeping track of appointments and medicines or dressing or feeding yourself, you will pay a lot more. The way it works is the facility will do an “assessment” and assign points for each type of care you need. Would you like help taking a shower? Do you have difficulty cutting meat? Do you have other bathroom issues? Based on the number of points, they will assess you an additional daily rate. In my case, the basic charge for the room was $140 per day, but the added charge for providing me assistance was $80 per day. That meant I would be paying $6600 per month for those months with 30 days — much more than I was paying at Huntington Manor. Nevertheless, they were advertising so many extra services that I felt I should try it out.

Corporate greed trumps senior need.

If I had known what was going on behind the scenes, I would have made a different decision. I had been given the standard story –a married couple started this chain of facilities out of a desire to create lodging for seniors that felt more like homes and less like hospitals. This was true, and from the stories I heard from people who had worked there for many years, life used to be very good for both the staff and the residents. But then came the economic downturns and the big corporations smelled blood in the water. Today The Other Place is owned by a real estate investment trust (REIT) that packaged several hundred senior living facilities together and offers shares to investors. They have no interest in the business or the residents — but they certainly worry about their shareholders. They contract with large property management corporations to run each of the facilities as profitably as possible. How do you get more profits? You cut costs and raise rates.

I experienced the cost-cutting first. This showed up in the number and quality of the activities offered, the quality of the food, and the number of caregivers available.

Activities – not my idea of good times.

The main reason my family wanted me to move to a large facility was for the activities. Even before the cost-cutting, I discovered that most of the activities were designed around the needs of people who were much older and especially for those who were suffering from early stages of memory loss. I’m sure my children picture me have a lively conversations, going to movies, developing close friendships, etc. Sadly, that did not turn out to be the case. Most of the activities focused on either playing bingo, or playing simple word games. There were crafts every couple of weeks but they were usually at the level of early elementary school. I understand that I was not the target audience for their program. Assisted living activities programs are mostly for people who are over the age of 80, female and with some form of cognitive difficulties.

The one program I truly enjoyed was the music. They brought in professional musicians who performed and encouraged residents to join in singing. Of course that cost money and it was one of the the first programs to be affected by budget cuts. The number of acts was cut in half and some performers just quit coming because the pay was too low. There were monthly excursions and weekly trips to local restaurants but I preferred my wheelchair and public transit for the independence it gave me. Besides, many of the residents needed to be watched carefully, so any trips away from the facility required at least one caregiver for every two residents to make sure no one wandered off. This limited the number of participants to about ten residents.

Dining

I had heard stories about the elegant dinners they used to serve, and you still see pictures of food from those events posted on their website. I never saw any personally however because by the time I arrived all menus were being planned from the central headquarters back east and the local chef was given almost no authority to change the menu or improve the quality of food being offered. In fact, the menus were printed a month in advance and shipped to the facility to be displayed for each meal. After a few weeks, everything seemed to taste the same. That was because many of the foods were based on the same packaged ingredients. For example soups were made from one of four stock bases. Very few items were cut from scratch in the kitchen.

No turkey loafing at Huntington Manor.

No turkey loafing at Huntington Manor.

At Huntington Manor, the first step in making chicken soup is to boil some chicken. At The Other Place, most turkey or ham dinners come from deli loafs of turkey or ham. Here, they come from turkeys and hams.

Cuts in caregiving.

Perhaps the saddest result of corporate greed is what happened to the caregivers and their relationships with residents. When I arrived there were seven or eight caregivers on duty during the daytime hours. They were charged with caring for approximately 70 residents. By the time I left, many days there were only five caregivers for the same number of residents. If you are doing the math you’ll see this works out to one caregiver for every 14 residents. Subtract from that the several hours per day they must spend on other tasks such as working in the dining room and there is obviously little time to get to know a resident well. By contrast, at Huntington Manor we have five caregivers on duty during the daytime for 27 residents – – an average of about one caregiver for every five residents. At night, the contrast is even more dramatic. The Other Place has two caregivers on duty at night for all 70 residents. Huntington Manor has three on duty for 27 residents.

At both facilities, the people who actually provide the care are competent and hard-working. Many of them truly enjoy what they do and like to help people. Because the pay levels are so low they typically work two or more jobs to support their families. They deserve our respect. Unfortunately many of the residents have personality disorders that go along with dementia, making them difficult to care for. In my four years of living in facilities, I have never experienced any kind of abuse but I have certainly seen caregivers on the receiving end of it.

Where does the payroll go?

Something else that comes along with bloated corporate ownership is bloated staff. It’s wasteful but may be necessary to keep up with the record-keeping and regulatory demands of a big corporation. Where I am now we have four staff who are seldom involved in direct patient care: the owner, the administrator, the cleaning person and the gardener. At The Other Place most of the common areas are filled with offices. There is the executive director plus people in charge of the business office, sales, assisted living, intermediate memory care, health services, activities, food service, maintenance, and reception. Many of these have their own staff. Every two months or so a carload of impeccably dressed executives descends on the managers and hovers over them making sure every procedure is carried out according to the corporate book. I’m sure the regional managers fly back to headquarters every so often for some of the same treatment. Almost lost from sight are the five or so caregivers themselves.

The big price increase.

When I was negotiating the price for The Other Place, I was given a chart showing price increases during the past several years. They averaged about 2% which made me feel comfortable that I could manage them. After a year I got my first actual price increase. It was just under 10%! Doing some investigating, I learned that a dollar increase of about the same amount was likely for the following year. There was no way I could afford to live here unless I changed to one of the smallest rooms. To do that I would need to reinstall my overhead lifts – an expense of about $2000 and adjust to a cramped lifestyle and wait for the next round of cost cutting and price increases. It so happened that I heard from Huntington Manor the next day asking if I would like to return. I really didn’t have to think twice. So now I am back here and far happier. I miss my favorite caregiver at The Other Place but I am back with good friends that I had here before. If only I had known all of this beforehand, it would have saved me tens of thousands of dollars.

Conclusion:

Despite my experience, I am not recommending people avoid larger facilities. For their target audience, they are providing the services those people seek and can afford to pay for. If someone has Alzheimer’s disease, it could be a very good choice. However, for those of us whose challenge is mostly loss of mobility, we may need to be more creative in our selection process. The big chains now control the largest portion of assisted living beds, but there are many intermediate and small privately owned facilities. Here in California, six-bed Residential Care For the Elderly (RCFE) properties are everywhere. They are less strictly regulated and can offer personally tailored types of care sometimes at significantly less cost. I was unable to find one that could meet my needs, but not many people are as mobility-challenged as I am. If you are facing the prospect of needing more care then you can receive at home, don’t be discouraged. During these past four years the good moments have far outweighed the bad and I’m looking forward to more.

Mike Shirk

Nov 192015
 

My new/old home is calling me back.

My new/old home is calling me back.

My former assisted-living facility has been tugging at my emotions for some time. Then my current facility gave me a swift kick in the wallet. So I am moving back to Huntington Manor in Poway, the place that originally welcomed my wife and me with all of our disabilities, where I was living when she died and just a mile from where her ashes are buried. Compared to my current facility, it is one fourth the size, 30 miles further inland, and more country then luxury. But it is also much closer to my eldest daughter and many of my friends, more flexible in the kind and amount of care provided and surrounded by the mountains and trails I have enjoyed for so much of my life. So when I received the letter from Sunrise telling me my rates were being raised by nearly 10%, the message was clear: “Go!”

I can’t have my old room back with its gorgeous view, but they are doing all they can to make me comfortable in a different arrangement. I will be occupying two rooms that were recently constructed as part of an overall improvement project. (You can see them in the background of the photograph.) In a few weeks, once I am settled, I will share some of the insights I have gained into the big business side of assisted living. One little preview – – instead of a family–owned chain of facilities, I have actually been living in a real estate investment trust, VENTAS, comprising many hundreds of properties, each being run by property management firms, with the primary emphasis on returns to investors. Exactly what that means to the residents, and the hard-working caregivers who serve them, will be the subject of my next blog post.

Aug 312015
 

The interest level and expectations surrounding BYM338 are evidenced here.

The interest level and expectations surrounding BYM338 are evidenced here.

All of us with inclusion body myositis are waiting anxiously for some sign of results from the Novartis BYM338 trials. After all, until now there has been no proven treatment available for this relentlessly progressive muscle wasting illness. The critical stage III worldwide trial is wrapping up later this year and so far all we have are anecdotal remarks from participants. Of course they can only guess because the study is blind, with a fourth of the participants getting a placebo and another fourth getting a dose that is very low. The good news is that some people are reporting results that to them seem significant enough they believe they must be getting either the middle or highest dose and it is working.

However there are places we can look to find real data. For example, a study report published in Current Rheumatology Reports and made available through Springer.com contains some actual results from the phase IIa trial on patients. This was a small trial of 14 participants and of them 11 received the drug. It states that the participants who received the drug were given a dose of 30 mg per kilogram of body weight in a single infusion. The results were then measured at two months and again at three months. After two months, the average person receiving the drug gained about 7 percent of thigh muscle volume. Walking distance in six minutes was measured another month later and the average drug recipient gained 15 percent in walking speed. Both results were statistically significant. The dose was three times greater than the maximum dose being used in the current stage IIb/III dose-finding trial, (although it was only a single dose while the trial consists of monthly doses.) According to the Brookings institute, these results were what prompted the FDA to grant Breakthrough Status to BYM338.

The results of an early study of BYM338 are reported here.

The results of an early study of BYM338 are reported here.

Another place we can look to obtain hints about the success of BYM338 is in the other trials that Novartis has been conducting. The ClinicalTrials.gov website lists eight studies that have been completed or are ongoing plus one that was withdrawn. Among the conditions for which the drug is being tested are IBM, sarcopenia, and cachexia related to chronic obstructive pulmonary disease, lung cancer and pancreatic cancer. Sarcopenia is the skeletal muscle wasting that occurs in most people beginning at age 30 and accelerates as we age. It is classified as an illness when the muscle wasting exceeds two standard deviations from the norm. Cachexia is the wasting of muscle plus fat that results from many serious illnesses. Considering the high cost of conducting all these trials, it is clear that Novartis has high hopes for the drug. As do we!

Questions:

1. In the Novartis quarterly report presentation for Q2 of 2015 they continue to state that FDA submission of BYM338 for sporadic inclusion body myositis will be in 2016. My physician was told by Novartis that they were accepting no requests for compassionate use for this drug prior to FDA approval. Might that policy change once the submission to FDA has been made? (Compassionate use, also called extended use, is an FDA program to make drugs available to seriously ill patients when no other medication is available. FDA states that compassionate use is available for drugs that have not been formally approved nor proven effective, so it is a mystery why Novartis has chosen to withhold this particular drug from the program.)

2. As I understand the mode of action of BYM338, it prevents myostatin from signaling muscle cells to stop growing. This allows the cells to resume their normal process of regeneration (myogenesis). Although it doesn’t cure the IBM, it hopefully will allow the body to build new muscle cells as fast or faster than IBM destroys them. Of interest to those of us where the disease process has resulted in near paralysis, how much muscle fiber must be remaining for myogenesis to take place?

3. The trial with mechanically ventilated patients was withdrawn. Does this mean there was some side effect related to mechanical ventilation? Unfortunately, some IBM patients may become too weak to breathe without mechanical assistance.

Jul 192014
 

Lately I’ve been getting less joy out of my wheelchair joystick.

As my upper body strength has declined, I have found it more and more difficult to control my wheelchair using a conventional joystick. I am able to maneuver the chair okay but when I first take hold of the joystick I need to sling my arm up and around and let it drop onto the knob. Frequently that results in me jerking the joystick in one direction or another and running my feet into a wall or backing the chair into furniture. A few months ago, my physiatrist at the MDA clinic recommended I be evaluated for an alternative control system. After trying several of them, I decided that my only hope was to try to design one myself. Before I show you my concept, let me explain what I found wrong with all of the others that were available.

The first idea was a micro joystick that would require much less strength to operate. However it had a very short “excursion” in other words the distance from zero movement to full speed was something like 1/10 of an inch. Also, it was designed to be moved with a finger. Those of you with IBM will immediately see the flaws there as our fingers are among the first parts of our bodies to lose strength. I could barely get the wheelchair through the door out of my room to try it out. Even when I tried to use my thumb, the amount of fine motor control needed far exceeded my capabilities.

The next experiment was a device that would be controlled by my chin. Once again my weakness got in the way. If I reclined the chair at all, my head collapsed back into the headrest and I no longer could even reach the chin control, let alone operate it. However this control did have a longer excursion and therefore I was able to at least get the chair out the door but I found it extremely difficult to keep it going in a straight line. Furthermore any distraction to either side that caused me to turn my head also turned the chair. Picture that happening while you’re going down a sidewalk with a steep curb!

There is another type of control that is similar to the chin control and that is a head array. We determined that it would have the same failings as the chin control for me.

There are other, more extreme types of alternative controls such as the sip and puff which uses your breath for control (another of my weaknesses). One that sounded fascinating was a trackpad system which would be very similar to using the mouse on a computer. Hwever it relies on being able to control your fingers which I can’t.

In this proposed control, my thumb rests on a miniaturized joystick. My remaining shoulder muscles would slide my hand forward and back for controlling wheelchair speed while my thumb muscle (the only one left in my hand) would control the direction left and right.

In this proposed control, my thumb rests on a miniaturized joystick. My remaining shoulder muscles would slide my hand forward and back for controlling wheelchair speed while my thumb muscle (the only one left in my hand) would control the direction left and right.

So now we get to my proposed solution. I need a flat panel to rest my hand on when I first reach for the control. I have the most strength in my thumb, so it would be ideal if the joystick were waiting for me near, but slightly forward, of where my thumb would normally rest on the flat panel. I could then make a motion quite similar to the same one I use when I am controlling the mouse on my computer. I have become skilled with those motions out of necessity.

Access Medical sent my design to a company that specializes in making alternative wheelchair controls and I will let you know if they are able to come up with something for me.

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.

Feb 092013
 

Mike and Beth at a winery in Washington state, 1998

Beth and I visited a winery near Seattle on a 1998 driving trip along the coast to celebrate our 24th anniversary. I had been diagnosed two years earlier and was still getting around using forearm crutches. Beth wouldn't be diagnosed for seven more years.

Over the past several months, I have spent quite a bit of time browsing forums that deal with loss. Loss of a loved one, loss of ability, loss of strength and mobility. It makes me sad to hear of so many people who feel that no longer being able to walk, or no longer having the companionship of a loved one, means that life is no longer worthwhile.

I went from being a low handicap golfer, avid hiker and runner, enthusiastic traveler, to being confined to a wheelchair and now being confined to an 11′ x 15′ room, especially when the weather is too bad to go out for a wheelchair ride. My wife of 38 years died in October, far too young, due to her own rare disabling disease (myotonic muscular dystrophy).

I definitely grieve the loss of my wife and loss of strength and loss of the life I once had. At least once a day that grief will be strong enough to make me stop whatever I’m doing and shed a tear. In fact, during the first couple of months after my wife died, the grief was so intense that it was quite painful physically. Rather than avoid it, I chose to accept that pain, experience it as deeply and fully as possible, and in that way let it help me heal. Years ago, a meditation instructor taught our class how to get rid of a headache. He said when you felt it coming on to focus on the pain as intensely as you could. Try to describe it, determine its focal point, trace it throughout your body. The remarkable thing was that once a person focused intensely on the pain it usually went away. It seems that pain is trying to send us a message and if we can pay attention, it won’t have to shout so loud. So that is Part One of how I deal with grief and loss; I embrace the pain and let it heal. In fact, I pick a fight with it by writing this blog and the new blog I have created celebrating Beth’s life.

Part Two is realizing that my life is about so much more than what I have lost. I have the comfort of feeling surrounded by family, even though many of them live far away. Beyond that, life is so exciting right now due to the advances of technology. My computer provides a window into a world that I could never have imagined when I was growing up. I can use Google Earth Street View and visit nearly any city or countryside in the world just by moving my mouse. One moment I can be “walking” beside the Eiffel Tower, the next I can be riding along the Pacific Coast Highway at Big Sur. Recently I have developed a keen interest in computer programming and have discovered the wonderful online courses offered by Stanford University. In fact I was just watching a lecture (on iTunes) by a Stanford computer professor and marveling at how much I felt like I was right in the room. That prompted me to add this article to my blog.

In a few minutes, the caregiver will deliver my dinner, attach my mobile arm support, place a bib around my neck, and I can enjoy my meal while watching the latest Batman movie on my computer. So yes, my life is populated by loss and grief, but they are joined by new sources of fulfillment. I hope that others in my situation are finding their own joy as we continue this surprising journey.

May 292012
 

Note: At the time this series of articles was written, my wife Beth was still with us. She died October 11, 2012.

Beth having lunch during our first week at Huntington Manor

Beth having lunch on the deck outside our room during our first week at Huntington Manor

As my weakness from Inclusion Body Myositis became more debilitating and Beth’s vision and cognitive issues worsened, we faced the big question – should we move to assisted living?

There were several aspects to this decision. Perhaps the most easy to evaluate was the financial. Perhaps the most difficult was the emotional.
And then there were family issues, especially children who were tired of worrying about us.

Being the analytical type, I prepared numerous spreadsheets trying to decide whether the move to an assisted living facility made financial sense. I discovered that, to obtain adequate care within our home, we would need to spend about as much as it would cost to get assisted living outside the home. However, there were so many other emotional issues involved that no amount of tweaking the numbers on the spreadsheet seemed to fully resolve the issue in either of our minds.

View from our home in Rancho Bernardo

We had promised ourselves to spend the rest of our years in our Rancho Bernardo home.

We had spent a lot of money on, and had a significant emotional attachment to, the changes we made to our existing home. It was single-story, easy to get around for us in wheelchairs, and had a very nice view out the living room window. We each had our individual art studios on either side of the spacious family room. We would have to say goodbye to all of that. In addition we would be downsizing dramatically from about 1600 ft.² to a little over 500 ft.²

Then there was the concern about our independence. Would we feel as though we were unable to live our own lives if we moved into a facility that had its own schedule and structure?

Eventually, the more I worked on the financial side of it, the more I realized that moving to some form of facility was going to become inevitable. If we remained where we were and continued to spend considerably more money than we had coming in, we would eventually reach the point where we had exhausted our savings and then what? We could sell the home, but then we would hardly have enough resources to maintain us in any other location for more than a few years. On the other hand if we moved and spent down our savings, we could retain our home and rent it, which would provide additional income during that time. Then, when the savings was depleted, we could sell the home and continue to live in the assisted living facility for several more years.

So, ultimately, the practical considerations and family concerns outweighed the emotional worries. How is it working out? Better than we expected. In the next article we will get into the details of how we chose Huntington Manor to be our home – conceivably for the rest of our lives.

Index for this 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?

Mar 112012
 

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

Jun 082011
 

Mike in a ceiling lift hovering above his bed.

Mike in a ceiling lift hovering above his bed.

Now that I am too weak for sliding transfers, the only option is for someone or something to pick me up. I chose the latter – a ceiling lift. I had previously installed two, one in the bedroom and one in the bath, so now it was time to put them to use. This video shows the process I go through each morning and night.

Important update: when I lived at home, these lifts were attached to the ceiling. Now that I am in assisted living that is no longer a desirable solution. There are new types of systems that require only unobtrusive pieces attached to walls on opposite sides of the room–they don’t even need to be attached to studs as all of the weight is absorbed at the base.