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?

  6 Responses to “What Can We Do About Assisted Living?”

  1. Right On Mike! I often lie awake nights wondering what we will do as Jack’s IBM progresses. I can no longer shower him, as he needs a shower chair and I cannot push it (another unrelated story). Visiting Nurses will send someone for two months, then we have to find another source. VN is covered by Medicare and supplementary insurance, but independent services are not. What it comes down to is that we would have to pay $40.00 just for Jack to have a shower and shampoo. Why is it so expensive to those unable to work and earn money? Jack has been on SSDI for 16 years now, and our income was initially reduced by one third. Now that I am retired (or working at home as his primary care giver) I am just trying to think of a way to afford a handicapped van. We have to live day by day, trying not to dwell on the future of his disease while still trying to plan for it.

  2. Another excellent posting, Mike! Wish I had answers.

    I do live day by day and pray a lot whenever I am transferring. So far I am still able to take care of my own personal needs, but beyond that am too fatigued for much else. I am blessed to have an angel husband who has taken on laundry and cooking and can take me to appointments and water therapy with our accessible van. Every two weeks we have someone come in for cleaning our home.

    Having IBM is a humbling experience and I learned to be grateful for all the small and big blessings in my life. Do keep up the good fight, you are in my prayers.

  3. Thanks for sharing this story. It is too bad to know that the society is demanding higher costs for senior care. Caring for seniors is a gesture of worship in action. I have seen people that just consider adult care as an art. At least caregiver’s also have aged parents and costing higher means they are costing their parents.

  4. […] How can we make assisted living better for the physically disabled? […]

  5. […] How can we make assisted living better for the physically disabled? […]

  6. Hi Mike
    Here in the UK I get help from local council social services etc, i have lever taps fitted in the kitchen and bathroom, grab rails, bed rail support, raised stool in the kitchen, stair lift, wheelchair , arm support crutches all provided free and i use a mobility scooter to get around that was bought at my cost, if these items weren’t free it wold have cost me a fortune to buy them.

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