Life! disabled

Mike and Beth's Big Move, Part I

Assisted Living, BTW, Bedroom, Chronicles of Disability, Daily Living, Get Support, Huntington Manor, Motivation, Muscle Disease 1 Response »

May 152012

Mike and Beth touring the English Garden at Huntington Manor Assisted Living.

We are moving to Huntington Manor, an assisted living facility about 5 miles from the single-family home where we have been living for the past six years. This may come as a shock to many who know us and know how fervently I have been clinging to my independence. It comes as an even greater shock to us. However it is not a move that has been made casually. It is the culmination of many months of questioning, analyzing, arguing and soul-searching. The best way to picture what we have been going through is to pretend you are passengers on the Titanic. You’ve been enjoying a spacious stateroom and fine cuisine. Then the iceberg announces itself. You can choose to remain in your comfortable stateroom and hope for the best, or you can fight through the crowds and climb into a lifeboat, with no idea how you will survive that experience. But you know the freezing waters of the North Atlantic are waiting if you make the wrong choice.

For us, that time arrived when we could no longer say that we were each others’ caregivers.

I have been in a wheelchair for 12 years and my wife has been in hers for six. But we have always managed to find a way to be just enough help to one another to get by on our own. Several months ago I began losing what little strength I had in my hands and arms, causing me to stop driving, stop cooking, and start thinking about what to do next.

I am technically classified as “non-ambulatory” and in my case that is an understatement. I cannot walk, I cannot stand, raise my head, or rise to a sitting position without the help of my electric bed. Most assisted living facilities can’t accept a non ambulatory resident. Maybe we should just stay put.

Then at Christmas my wife began having symptoms of a cognitive issue. Whatever is going wrong inside her brain causes her to be very anxious and confused, especially at night. She will get up at two in the morning thinking it is time for her to leave for an appointment. Picture my helplessness lying in bed knowing that I can’t get out before attaching my ceiling lift sling and using it to get into my wheelchair, a process that would take at least half an hour. That is when I realized that it was no longer safe for us to be alone. The waters were rising.

Huntington Manor is an Assisted Living facility in Poway, California

So, back to the search for assisted living. Fortunately we discovered a facility that had been off the radar the first time I looked. It is Huntington Manor, a charming old ranch home that has been converted into a modern assisted living facility with a special emphasis on meeting the needs of the frail elderly. We are neither frail nor elderly but the services they offer are exactly what we need. Best of all, because of their emphasis on an older population, many of their rooms are certified to handle non-ambulatory and bedridden patients – like us.

The owner was very sympathetic to our situation and offered to make some modifications on a new wing of his building to make the transition for us less painful. The most significant change was to give us two rooms at the end of the hall, remove the doors while adding a wall and door in the hall. This lets us be together and also gives us some much needed extra storage space.

End of Part I

This is such a significant change in our lives and has involved so much soul searching and analysis that it cannot be adequately covered in a single blog article.

Therefore I will be posting a series of articles about the process as well as more articles on the actual move-in and adjustments we will be making.

Part II – How we approached the decision to move to assisted living, emotionally, practically and financially.

Part III – Why we chose Huntington Manor.

Part IV – Deciding what to take, what to leave, how to adjust our expectations.

Later I will be writing blog articles about life in the assisted living facility both for my own blog in for a new blog I will be writing for Huntington Manor.

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.

I Won't Stand For That

BTW, Get Creative, Inclusion Body Myositis, Motivation, Muscle Disease 13 Responses »

Nov 252011

Mike takes his song on the road.

(But I will sing about it.) I wrote and performed this song to encourage myself and others suffering from a serious chronic illness to keep fighting and even enjoy the struggle. Most of the video was shot with my iPhone 4s, editing was done in iMovie, instrumentals created with Band in a Box and Garageband, vocals recorded and final compilation done on a MacBook Pro using Garageband.
I Won’t Stand For That

Where Was I?

BTW, Clothing, DIY, Daily Living, Get Creative, Mobility, Motivation, Muscle Disease, Sewing, Vehicle Modifications 7 Responses »

Oct 112011

This shows how badly I needed a custom back for my wheelchair.

I apologize for the length of time that I have been absent from my blog site. Over the past few months, my upper body strength has deteriorated dramatically. I had always assumed that my illness (Inclusion Body Myositis) would continue to progress slowly, as that is how it is described in the medical literature. However, you can’t always believe what you read. Just since this spring, I have lost the ability to raise my right arm. This has also caused me to give up driving, abandon any thought of painting, and even give up using my iPad (can’t lift it). It has also forced me to develop a lot of additional tools that I need just to get through the day.

To be honest, I have been more depressed than at any point in my disease progression, and this has caused me to lose motivation. I am finally coming to grips with my new status and am ready to renew the fight. In fact, I am finishing up work on a song that hopefully will inspire me to persevere. It is called, “I won’t stand for that.” As soon as I finish production, I will be posting it here. (I am no singer, but I did have some musical ability in my previous life.)

I have also recently designed a unique pair of “shoes” that I can put on by myself and I will demonstrate those in the next couple of weeks.

Another major milestone has been the acquisition of a custom–molded back rest for my wheelchair which has made a huge difference in my general well-being. More to come on that as well.

Getting Dressed with Help From Above

BTW, Bathroom, Bedroom, Clothing, DIY, Daily Living, Sewing 2 Responses »

Aug 182011

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.

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.

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

What Keeps Me Hangin' On?

Bathroom, Bedroom, Clothing, Daily Living, Equipment, Home Modifications, Inclusion Body Myositis, Mobility, Muscle Disease 4 Responses »

Jun 082011

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.

The Artistic Side of Our Braun Entervan.

BTW, Mobility, Our Studio, San Diego Access Issues, Vehicle Modifications No Responses »

May 182011

Mike and Beth at the DreamAbility Reception

A trip to an art exhibition for disabled artists (including us) triggered some thoughts about the role our accessible van had played in our art careers. See the full article here:

Shot Down by The Remington Club

BTW, Bathroom, Bedroom, Daily Living, Equipment, Home Modifications, Mobility, San Diego, San Diego Access Issues 16 Responses »

May 062011

The Remington Club sign with text added by the author.

I have always been a planner. So when 15 years ago I was presented with a diagnosis of a disabling, progressive, and untreatable muscle disease, my planning mode went into overdrive. How would I cope with each phase of the disease? What would I do when I could no longer work? And what about that dreaded time when I was no longer able to dress or bathe myself? I was able to deal with most of the steps along the way by purchasing scooters, wheelchairs, mobility vans, and by making all kinds of different assistive devices to use around the home. Readers of this blog will have seen many of those (with plenty more to come).

But it was that last phase that worried me most. I always figured I would simply have to move into assisted living once I was incapable of doing things for myself. Keep in mind that my wife was diagnosed with her own disabling, progressive, untreatable muscle disease five years ago, so she couldn’t be the solution to my own weakness.

Well, that time I have thought about with great foreboding has arrived. Not only can I no longer stand or walk, my shoulders have suddenly begun to lose strength to the point that on some days I can’t raise either arm much above my waist. This has taken away my ability to make transfers on a sliding board as my arms just don’t have the strength to give me the support I need in that process. My biggest stumbling block right now is getting onto a shower seat. Even though I had the foresight (planning) to install ceiling lifts above my bed and above my bathroom, manipulating the complicated harness is becoming a very challenging endeavor with my weak arms and immobile fingers.

It just so happens there is a very attractive assisted living facility a few blocks from our house – The Remington Club. I had always assumed that would be my next destination. So I called them to get an idea of prices and room availability, etc. That is when I discovered that all of my planning had omitted a very important question. Would they be able to help someone who is too weak to stand? The answer was an emphatic “no”. Maybe that was just one particular facility that had enough business that it didn’t need to go out of its way I thought. So I called another assisted-living home that came very highly recommended and asked the same question. Absolutely not, they said. Yet another call produced another turn-down.

Later that day, I had business to take care of with a company that had provided me the overhead lift systems. As I was speaking with the owner, I asked him if he had run into this problem of assisted living facilities not wanting to deal with people who required the kind of equipment he sold. I had pointed out to the representative of the Remington Club that portable lift systems could be set up in a residence room at a fairly low cost and would make it simple for one of their staff to move me to the desired location such as getting me out of bed or putting me into the shower. That did not change their mind. He told me that he had indeed run into that end in one case had managed to persuade a very small facility to install a portable lift system in a residence living area, and that they were so pleased with the result, they asked him to install more and some of their other rooms so that they could accept a wider variety of client.

But in general, it appears to be the rule that assisted living facilities don’t want to give that much assistance. Which leaves a huge population of people like me who only need help getting into and out of bed and into and out of the shower without any options other than to hire people to work inside my own home. We now have a caregiver twice a week to help me take a shower, but I still can’t get over the shortsightedness displayed in the current attitude of assisted living facilities toward people who are physically disabled to the extent that they can’t stand on their own. Especially when you consider that the equipment to lift and move such a person costs less than one months rental in the typical assisted living facility. The resident could either buy it for themselves (I have been told that Medicare will reimburse for a lift system for someone who is unable to support their own weight when it is necessary to get them out of bed) or the institution could purchase it for themselves and, since it is portable reuse it in several apartments.

The mobility supplier that I spoke with said that the track system could be placed in several rooms and a single lifting device moved from room to room as needed since the hoist itself weighs only a few pounds.

If you know anyone in the assisted living industry, please pass along the link to this article.

Life! disabled featured in Myositis publication.

BTW, Inclusion Body Myositis, Research, Resources No Responses »

Apr 282011

The Outlook Spring 2011, Page 6

The Outlook, a quarterly publication edited by Theresa Curry for The Myositis Association (TMA) devotes nearly two pages of its Spring 2011 issue to tell its readers about the Life! disabled blog. TMA is a nonprofit organization located in Alexandria, Virginia and dedicated to raising and distributing research dollars in search of cures for the various myositis diseases. In addition to being mailed to patients, caregivers, physicians, researchers and opinion leaders, the Outlook is also available online to members of The Myositis Association. One way to support the important research they do is to join TMA. The dues are very reasonable and the work they do is extremely valuable, especially to those of us who suffer from such rare, difficult and disabling illnesses. Please visit their website: http://myositis.org

How Ability Center Modified Our Braun EnterVan to Help Me Keep Driving

BTW No Responses »

Mar 242011

Braun EnterVan Steering Wheel with Hand Controls

A letter from DMV and weakness in my driving hands triggered a visit to our mobility specialist. Read all about it on the Braun AbilityVoice website.Read the full article.

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Beth and Mike's Big Move Part II - Making the Decision to go to assisted living.

Too Many Shoes

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