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:

Dec 192013
 

What if you liked to drive fast? And what if you couldn’t drive at all? What if the most exciting part of any trip was when you tried to negotiate your power chair onto the EZ-LOK system on the floor of your van?

Well, that’s basically my situation. But I do have a few advantages. I have a power wheelchair. It doesn’t go really fast, but I usually can catch up to most of the pedestrians on the sidewalk. More importantly, I have a GoPro camera that I can strap to my head or mount on the chair. And I have A brand-new iMac with Logic Pro X for manipulating sound and creating music plus Final Cut Pro X for editing video. Put it altogether, and what might be the result?

You are about to find out, provided you click on the video link below. It only lasts a minute and half, but it might give you a whole new idea of what life in an assisted living community could be like.

I call it Huntington Raceway Lap. You will see why.

Enjoy.

Jul 132012
 

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

Beth and Mike in the Huntington Manor courtyard.

Beth and Mike adjusting to life at Huntington Manor.

I may have over promised when I said the next article would be about adjusting to life in assisted-living. I have always embraced change, and therefore I thought this would just be one more change to assimilate.

I didn’t realize this would be a different kind of change. Most of life is marked with milestones of achievement – moving away from home, graduations, first love, first home, marriage, children, a bigger home, promotions, recognitions, vacations, retirement.

Even the downsizing that goes along with later stages of life can be viewed positively as you are shedding excess baggage, allowing you to have more time for travel and fun.

But this is different. If most of life is like climbing a winding mountain road in a sports car eagerly waiting to see what’s around each turn, what we are going through now is like stalling and coasting back down the mountain in reverse, with the certain knowledge you will never make it back home.

However, blaming assisted living for our sense of loss is like blaming your garage for no longer holding a car. Physical and personal circumstances have altered the trajectory of our lives. Well-meaning family and friends try their best to make us feel like we are still part of their circle, but the truth is we are not. We are part of a completely different life, one that is necessarily highly regulated and predictable.

Mike, Drew, Linda, Howard, Jennifer and Beth at Huntington Manor

Family members joined us at the Huntington Manor Summer Picnic.


So how does one adjust? I believe there are some key steps:

1. Accept the change. Dwelling on what used to be your life is a sure path to depression. In an earlier post I said I needed to rewrite my life’s script when I learned I had an untreatable, progressively disabling disease. Perhaps now it is time to tear up the script altogether and improvise!

2. Celebrate the advantages. While assisted living may limit your options, it also can improve many aspects of your life, especially if you have been struggling with the activities of daily living. Being helped out of bed, bathed, dressed and fed a nutritious breakfast is a wonderful gift. So is having help available at the push of a button. Cheerful caregivers bring us water and snacks, make sure we get our medicine, drive us to doctors, serve us lunch and dinner on our patio and help us to bed when we are ready.

3. Find purpose. In my case, I’ve taken on the job of building an internet presence for Huntington Manor by updating their website, adding two blogs, one on facility news and one on cooking for the frail elderly, and a Facebook page. I am also dusting off my old php/sql skills to build a database to be used for administration and marketing. I have also given myself the longer term objective of writing one or more books.

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?

Jun 112012
 

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

Ceiling Lift installed in my room at Huntington Manor

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

Once we decided we needed assisted living, there was another choice to make — which facility. We knew the change was going to be huge, whichever facility we chose. so we tried to find as many ways as possible to keep our life intact. This included finding a place not too far away so the overall community would still be familiar to us, and one that would allow us to bring enough personal items to continue our lifestyle as best we could. For example, we both use power wheelchairs and wanted to continue to do so as they give us the independence to travel several miles into the surrounding area. We are both artists and wanted to be able to bring our art supplies and our table. Of course we wanted to remain together for as long as possible.

We did a CANHR (California Advocates for Nursing Home Reform) search and it yielded nearly 700 facilities just for San Diego County. Most are converted single-family homes where they are able to keep six residents, two to a bedroom. Small facilities such as this do not have as restrictive licensing requirements as larger ones and they may be less expensive. For many people this might be a good alternative, however for us they were not appropriate.

Huntington Manor Dining Room

Every few days, before signing a contract, I would roll into the Huntington Manor dining room unannounced.

We needed wide hallways and doorways and adjoining separate rooms to accommodate our large wheelchairs — a physical layout rarely found in a single-family home. Since I cannot help with transfers, I needed a team of caregivers or an overhead lift system. I was also concerned whether a small facility would have the level of care we needed for Beth’s complex medication management and my challenging physical state due to inclusion body myositis.

There are several large assisted living facilities in the county, but they have fire code restrictions that prevent them from accepting non ambulatory residents. Most have associated skilled nursing facilities which is where they suggested I stay, but that would totally restrict my freedom and be very expensive. Also, because our needs were different, the large facilities planned to put my wife and I into two separate buildings.

After eliminating hundreds of facilities, we came upon Huntington Manor, just five miles east, in Poway, California. At 27 residents it was neither large nor small, which for our needs was just right.  It came with good online recommendations and had beautiful surroundings. What really caught my eye was their statement that they accepted nonambulatory patients. Huntington Manor specializes in caring for the frail elderly and has done all of the necessary legal groundwork to be able to accept up to 21 residents who are unable to bear weight. Also, for the first time, I found a facility owner who was willing, even eager, to let me install an overhead lift system in my room.

I stopped by several times, unannounced, to observe the staff and sample the food (friendly, delicious).

A plate of BBQ chicken, carrots and peas

With plates like this, Huntington Manor passed the taste test.

One drawback, which the owner made sure we understood, was the age of the other residents. Most are in their nineties, so we may need to look outside the facility for social interactions.

Price was an issue of course and although Huntington Manor was less expensive than some of the very large facilities, it is still more than we can afford indefinitely. Eventually we will need to sell our home and after that within a few years we’ll need to find some other living arrangement.

In the meantime I am looking for additional sources of income. (Any potential sponsors for this blog site, please take note.)

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?

May 152012
 

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

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

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

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.

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?