Assisted Living

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

Feb 252016
 
On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

On the left, the way we were in 1996. On the right, with some of my grandchildren and great grandchildren, late last year.

Normally, my “Chronicles of Disability” consists of annual reports on the changes in my health over the previous 12 months. I forgot to post a report for the year 2014, but perhaps it’s just as well because there were very few changes – – just more weakness in general. So now we come to this major milestone. It has been 20 years since I was diagnosed with inclusion body myositis (IBM). This rare muscle wasting disease is described as “slowly progressing”. That may be true one month to the next or even one year to the next. But when the person I was in 1996 is compared to who I am today, the contrast is jaw-dropping.

Twenty years ago I didn’t think there was much wrong with me. Yes I was slowing down in my running, and my golf shots seemed to be getting shorter, and I did fall once in a while, so what? I was 55 years old, just normal aging? I could still hike mountain trails, jog (slowly), show up for work every morning, work around the house, go to parties with my wife, take long driving vacations. Life was very good.

Now, I very nearly meet the criteria of a quadriplegic. I can’t move either of my legs or my left arm. I can only raise my right arm a few inches above my waist. I cannot stand, walk, or transfer without the aid of an overhead lift system and a caregiver. This will probably be the last year that I am able to continue feeding myself, unless the new drug (BYM338) gets released and actually works. My fingers don’t bend and my speech is getting quite weak. This is making my writing avocation more challenging and I may need to give it up within a year or so. Unrelated to my disease, but definitely affecting my life, my wife died of her own rare muscle illness in 2012.

My current home features the ultimate "open floor plan". My wheelchair loves it.

My current home features the ultimate “open floor plan”. My wheelchair loves it.

At the time of my initial diagnosis, we were living in a two-story four-bedroom home overlooking the mountains of southern California and a little slice of the Pacific Ocean. Today I am living in 250 square feet in an assisted living facility. The room is comfortable, the view isn’t bad (mostly of an ancient olive grove), the caregivers are friendly and helpful, and the food is very good. My days are spent doing what writing I can, either for Huntington Manor or for my Life Disabled blog, but that work is getting more difficult every day. So instead I am catching up on a lot of movies and television and doing a little reading. I also like to take my wheelchair out on long jaunts through the countryside and down to the local business district of Poway. Huntington Manor is launching a major renovation of the facility and I have been promised one of the beautiful new rooms that will overlook the garden and the hills beyond. That is enough to keep me motivated to stick around until the project is finished in 2017.

When I first started this blog, and when I wrote “Rolling Back: Through a Life Disabled” I suggested that the newly diagnosed read about my experiences to be properly prepared for what lies ahead. Now with a new treatment on the horizon, it is quite likely they may never have to experience this severe of a decline.

I have reposted many of the pictures and captions from the past 20 years. I think they tell an interesting story about the effects IBM has had on one person’s life. As you’ll see, I have remained generally happy and hopeful throughout that time, but I must admit that my general mood has been declining. Recently, I saw a neurologist who lowered my expectations for the new drug by pointing out that it would not be of any use for the muscles that were already dead and that, in my case, most of the muscles are completely destroyed. The most I can hope for is maintaining the minimal capabilities I have now.

By the way, one of the special pleasures I get these days is when someone purchases my book. It’s available on Amazon — just click on the link on this page — seven dollars for paperback and three dollars for the Kindle edition, or free if you are using Kindle Unlimited.

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.

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?

Oct 012014
 

As you may know, I recently launched a series of blog posts discussing the benefits of overhead lifts and questioning why assisted-living facilities were not using them in this country. To gather data I had a meeting with the owner of Pacific Mobility (installed my lifts) and representatives of Prism Medical (manufactured my lifts). during the course of the meeting, someone mentioned that Sunrise Senior Living had a policy against lifting residents without mechanical assistance.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

After the meeting I looked them up and discovered Sunrise was one of the the original assisted living programs for the United States and has grown to about 300 facilities in the US, Canada and Great Britain. Their founders were from Holland and their story is worth reading. You can find it on the Sunrise website.

Sunrise has facilities in the San Diego area that I had previously ruled out because of the locations. However I decided to give Sunrise at La Costa a call. I learned that they that do have a policy against most manual lifting however they use floor lifts to accomplish it. So of course I told them all about the advantages of overhead lifting and directed them to this site. After watching the video and reading my previous post, they decided to ask regional management for permission to give it a try. Hallelujah! They agreed.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

I learned that living here would cost me nearly double what I have been paying at Huntington Manor. But since I had made such an issue of finding another facility that would accept me and my lifts I felt I had no choice but to make the move. I’ve been here several weeks now and am truly enjoying this new environment. For one thing, I am only a 30 minute wheelchair ride from the ocean. For longer trips, the local bus stops right in front every half-hour seven days a week. Also, because I am disabled, I get to ride for free on both the bus and the local rail transit.

In an attempt to make my relatively meager funds hold out, I have taken on two freelance clients. Fortunately since my background is in marketing consultation and writing, I can accomplish both mostly online with the aid of voice recognition.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

Pacific Mobility owner Jeff Conner presents me with a brand-new overhead lift mechanism courtesy of Prism Medical.

More news to lift my spirits: Last week, Jeff Conner, the owner of Pacific Mobility stopped by with a free lift, courtesy of Prism Medical and installed the lift along with brand-new batteries.

By the way, this does not mark the end of my series on the advantages of overhead lifts. There are still thousands of assisted living and skilled nursing facilities that have not seen the light. Perhaps even more importantly there are countless caregivers trying to transfer and transport their disabled loved ones without the aid that an overhead lift could provide.

Note: if you reached this page from my series of posts on the subject of assisted living, here is how to get back:

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?

Jul 292014
 

Ceiling Lift installed in my room at Huntington Manor

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


So why aren’t more facilities using them?

A few weeks ago, I decided to find out. It seems that the answer may be very complicated, although, like many questions, money and politics may be at the root of the issue. In the following posts I will share what knowledge I have been able to gain through talking with facilities, manufacturers, and installers. For this first post, I simply want to make everyone understand how simple the process of doing a transfer with an overhead lift can be. Those of you who have followed my blog through the years will recall the nightmare experience I had at a local hospital when they tried to transfer me with brute force. I weigh 220 pounds and it would take a lot of brutes to get me out of my chair.

So please watch the video below with that in mind. It is only four minutes long, because that is as long as it takes a single caregiver to smoothly and safely pick me up from my bed and put me in my wheelchair.

However, I know there are many other factors holding facilities back. Besides money, some are concerned whether it would be safe to install a lift within one of their rooms. I will show the many types of installations and explain that there is one for almost any situation. Others think it would be an expense that they might never recover. There are plenty of case histories to put that fear to rest. Then there is the misperception that most facilities don’t use overhead lifts. While this may be true in California and many other states, it is definitely not true in Europe and Canada. What do they know that we don’t? That will be the focus of one of my articles.

Jun 102014
 

Ceiling Lift installed in my room at Huntington Manor

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

I am about to begin some posts on a subject that has been the source of puzzlement to me for some time.

Overhead lifts are widely used throughout Europe and Canada where studies have shown they dramatically reduce resident and caregiver injuries. They also cut labor costs since transfers that normally require two or more caregivers are now safely accomplished with one. Despite this information, the assisted living industry in the United States appears to be intractably opposed to overhead lifts, or for that matter any kind of patient lifts, within their facilities. Asking around I have found that many of the major chains have forbidden facilities from installing these systems. Instead they require the caregivers to do the lifting and repositioning. Some claim that overhead lifts would increase labor costs and lead to more injuries and lawsuits, despite the evidence that the opposite is true.

I am trying to determine why there is such opposition. I’m also trying to learn if the problem is as widespread as I believe. Today I heard from a facility that is part of one of the largest chins in the country. According to the person I spoke with, the decision came from their risk management people. (Unsure whether it is an in-house department or a separate risk management company.)

I need your help. Please comment on this post or my Facebook entry that I have linked to this post and let me know anything you have observed on the subject. I plan to publish the first article around the beginning of next week.

Topics will include:

An overview of the issue.
The types of modern overhead lifts available and how they work.
The myths and truths about overhead lifts.
Examples of the use of overhead lifts in other countries.
Exposing either the ignorance or the lack of concern for patients and caregivers that hinders their use in assisted living facilities in the United States.

If it turns out to be obstruction by either risk management or insurance companies I will address that subject as well.

I will deeply appreciate any help you can give me.

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:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

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.