I spent the greater part of a day last week trying to expedite the delivery of a Roho High Profile air cushion for my wife’s wheelchair. After several minutes of repeatedly explaining myself and this the fourth time that I had dealt with a medical supply company on the subject, I was a little frustrated. It seemed like this was the thing I always found myself doing. First, in order to get Medicare in the loop, my wife would have to go to a doctor and get a prescription for the particular item she needed. Never mind that she has been in a wheelchair for 37 years and is listed with every agency as permanently paraplegic. The thing that seemed to be the only absolute in any process was the amount of red tape, doubled and redoubled efforts to get something or acquire something that should have been routine.

My wife is a retired school teacher. She had opted to pursue a career in teaching in spite of paralysis from the chest down due to a motorcycle accident. For most of her adult life she has learned to cope and to be mobile without assistance. It was only recently that she started having more difficulties in negotiating herself through and around obstacles to her chair.  And as she grew older her body did not recover as quickly from infections or sores as in the past. That being said, it seems odd that the Medicare system is so disorganized or even inept that they cannot seem to ‘remember’  a patients’ files and status. Ditto for the VA which has been notoriously in the news lately and for good reason, as many vets are not getting the care they need.

I found the same ‘challenges’ when I was acquiring a new shower chair for my wife, and resolved that issue by just purchasing one for cash from a medical supply. I was assured there was ‘help’, but in fact it is more productive to watch paint drying than to deal with the government agencies at times.

The one area we did not have any trouble was with building a ramp for my wife. So urgent is the need for a ramp into a home that I am surprised people just don’t sit outside and camp in their yard waiting for the ramp to be installed. I work with local ministry’s and nonprofit agencies to provide ramps for the people who cannot afford one. I also widen bathroom doors, install handicap showers and rebuild and remodel homes for ease of access on the behalf of people who suddenly find themselves handicapped and disabled. To say that there is a lot to do is an understatement. I find very few people who are getting even the necessary things done in their homes.

So urgent is the need for a ramp into a home that I am surprised people just don’t sit outside and camp in their yard waiting for the ramp to be installed.

I built the ramp in the photo above for the granddaughter of a good friend. My friend asked if I could help out with this project because they had nowhere else to turn. Chrissy, or Christine (the granddaughter) had nowhere else to turn. At the age of 40 she had a degenerative bone disease that was so advanced that her feet were crumbling as she walked. She also had a case of Lupus and added another disease to that in Leukemia. Her husband suffers from Type 3 diabetes and is usually ash gray in color and usually drained of strength. Joe does a heroic job, but the fact remains that they collided with all the worse things that happen to working class people who are suddenly thrust unto social services for their medical care.

Christina had been a cashier all her working days and Joe a mechanic. Now they are struggling with just getting upright and mobile as each struggles with health and bodies that are shutting down. I am not going to go into the details of Christine’s struggles to get medical service and help. Quite honestly, it is too depressing. Because she was in a low paying job, her allotments from Medicaid and Medicare are low. When she needs another surgery she often has to go to multiple doctors to get all the facts together and build her own case for her need.

The ramp became necessary and was added to her mobile home a couple years ago. She had pins and screws in her feet holding them together and designed to prevent future breaks. But bone had crumbled so much that she suddenly had a screw nearly 3 inches long working out of her foot and the end had punched through the surface skin which necessitated another surgery and put her in a wheelchair.

What do we do when we are in desperate need and don’t have the material to provide the need? In the words of a Marine friend who had been a career soldier, “We improvise!” I had already built several ramps that year Christine was forced into a wheelchair and there was no money left in my coffers. I have tried to build every ramp and every remodel out of pocket. Simply because most people in the Land of (dis)Enchantment, New Mexico, are so short of cash that they often are not eating nor taking their prescriptions due to economic constraints.

But this is one area that miracles can happen. In spite of a very tough economy, many people are still generous here and we found a way to put the material together for a ramp for Christine. If you look at the photo it will quickly become apparent that the lumber is used and some is painted here and there. This is because this ramp is a combination of wood and lumber from several local businesses. The fir posts are from a well known barbecue restaurant. The treads or deck boards are from dismantled seats from a well-known restaurant that folded and closed. The rails are from glass crates that were used to transport window glass to local glass and window shops. The screws and nails as well as the wood preservative, which gives the joists that stained green look came from a local hardware store. No one business contributed all of the materials for this ramp. Because the floor of the mobile home Joe and Christine are living in was 32 inches off the ground, the ramp had to be 32 feet long to acquire the proper slope and be safe for a person to negotiate alone while in a chair. There is a ratio to use in determining the proper length and slope of a ramp. That formula is a 1/12 (One in Twelve) pitch. This simply translated means that a ramp is 12″ long for every 1″ of rise. Thus, a 32 inch high ramp at it’s head is 32 feet long.

In looking for help to build, consider contacting churches. And this is where you put your pride and shame aside and deal with things. Yes, I know. We all do that. We hate to admit we can’t take care of it ourselves. I am Southern Baptist in church affiliation. SO in my particular faith there are groups called Baptist Builders. They are volunteers that will help people by providing building skills and help as well as skill and expertise in building or remodelling for handicap issues. Are you going to hear someone share the Gospel with you? Probably! Baptists use their services to show people they are cared for and cared about by God. Here in New Mexico I have encountered another church that strives to help those in need. That is the Catholic churches. Again, many members are builders and will contribute labor and expertise to help those in the community with needs.

A third group that is sometimes available is the non-profit groups that will provide helping hands. And don’t forget the individuals that are out there who are good hearted. Craigslist has been a great source for material and help for us in this area. We find that if we are working with people and make the need known, that the best of society rises to the top like good cream.

We find that if we are working with people and make the need known, that the best of society rises to the top like good cream.

The fact is, regardless of how good your insurance plan is, sooner or later you are going to have the day that the help is not there in the traditional sense. It is at those times that you need to look around and be creative in your thinking.

Finally, as a caregiver, you need to be known as you truly are. This means being in community from time to time. Fellowship with people outside of the sphere or circle of the necessary. Find a church or support group where you are part of the community. As caregivers, we often view the world as suspicious because we convince ourselves that no one understands us. While that may be true, what is really needed is that we be known and remembered and missed if we don’t show up. When we are part of the community around us and not withdrawn and reclusive, we can often find these major tasks such as a wheelchair ramp or a bathroom remodel are not so difficult.

As caregivers, we often view the world as suspicious because we convince ourselves that no one understands us.

Christine’s ramp was built and finished with a collection of used and some new lumber. The property manager of the mobile home court she lived in was ignorant of her rights under the ADA code and I had to ‘educate’ the manager as well. While most people will show compassion, this particular individual was all about the homeowners association rules and the appearances of the properties. A wheel chair ramp, no matter how well painted and finished, was unacceptable to her.

If you are so unfortunate as to find yourself under the influence of selfish and uncaring people, please find the local building inspector and/or housing authority, planning director, or your elected representative and get support and help. The ADA code gives very clear guidelines when it comes to your needs and rights. Use the code and use the services of the local agencies to protect your rights. Life is tough for the disabled. When dealing with people who refuse to treat disabled people with dignity and respect it is infinitely tougher.

Perhaps the greatest piece of advice is that we should not put limits on where help comes from. If we look to only government agencies for help, we will soon find that we are forced into a holding or waiting pattern for far too long without any real relief. Be open to the services of other entities in your community such as churches and non-profits. They often can fill the need that would otherwise fall through the cracks. My wife often says that we need to stay positive. I am the first to say that is nearly impossible when staring at a huge need without the resources to deal with it.

Finally, I do something else that is not often thought necessary but is invaluable for future issues. Keep a log of your situation. When contacting people for services, write down who you called and what you were told and where or what you turned to next. It will save you from back tracking and doing the same things over and over and sometimes in the process of reading your own journal you can identify a new method or way of tackling a problem.

It is not always going to be easy. In fact as you well know, most of the time we as caregivers are in uncharted territory and we deal with a new list of unknowns every day. So when we have an opportunity to solve issues and problems with community support, we need to take it. Otherwise, we stand in danger of burning out as the many issues outside our expertise overwhelm us.

One of the things I am working on now is a design for a wheelchair ramp that can be emailed to those in need. It would be the design and specifications that a builder would need to construct a ramp for you or a loved one you are caring for. The drafting and illustrating is not ready for publication yet, but when it is it would be free to whoever emails and asks for it.

My wife and I are Christian, we attend a Southern Baptist Church in Albuquerque, and we have found that the need among disabled is great while the help available is sparse to very thin and often no help is available. After building 43 ramps in 2 years, we realized that the need is huge and very few people are properly cared for. Too often we have encountered former caregivers who are now being cared for as they attempted to carry their charge up or down stairs and in and out of bathrooms. The most recent was a woman who was caring for an elderly lady who had suffered a stroke. The nurse caregiver weighing about 95 lbs. was carrying an elderly lady who weighed about 110 lbs in and out of a house that was 36 inches off the ground. Every time the nurse took her aunt to an appointment she was carrying her up and down the front stairs of the home. On a wet and snowy day, the nurse was carrying the lady down the stairs and slipped on the ice on the stairs which caused an accident putting her in a wheelchair along side of the woman she was caring for. I don’t want to see that happening to someone else.

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This is a ramp that I built for a schoolteacher who was diagnosed with cancer. It was a simple and easy to build (for an experienced carpenter) ramp that consisted of just a few pieces of lumber and provided the lady with access to her home while she was undergoing treatment and needed a wheelchair. At this point it is not used as much as she is recovering.

The ramp in this photo is made of locally donated material and cost less than 100.00 to make as we only needed to buy wood preservatives and screws and adhesives to assemble it. We added a hand rail on each side to finish it off.

Here is another photo of a ramp I mentioned earlier in the article. In spite of the size and length of her ramp, it also cost only 150.00 approximately to build and it was painted after completion to give it an attractive appearance.

I am working on schematics and prints to detail the steps necessary to build this ramp and more advanced ramps for those readers who are in need of one. If this is something that you have need of for your loved one, contact me and I can share the plans and instructions. I can even make suggestions or explain how to modify to fit your situation if you send a photo of your particular situation.

Have other things needing remodel like bathroom? Let me know and I will be able to suggest or coach you and you can utilize family talent or have the specifications you need to hire a handyman to do the work for you.

The issue of access is huge when you suddenly find yourself dealing with wheelchairs and power chairs and scooters.