- Article by Jonathan Stretter and family
Mid-July 2013 - Things are changing around here. There are a lot of empty boxes on our front porch. My mom and dad are talking about moving to be closer to my brother. My mom wishes those boxes would magically fill up.
Boxes are beginning to pile up now inside our house. They don’t bother me much since I still have my comfy recliner to sit in and my TV to watch after I get home from my day program at Milestones.
July 21, 2013 - Today, my mom left me in bed until 10:30. When she did get me up, a strange person helped her. We didn’t even do our daily shower which is a big deal since mom thinks cleanliness is next to Godliness. I did get my face washed though and fresh clothes on. The strange lady fed me my breakfast too so my mom could pack boxes and give directions to a bunch of other people who showed up to help. Then at dinner time, I had another different person feed me. I guess both these ladies were nurses so my mom seemed to trust them as I choke easily when eating.
July 23, 2013 - When I got home from my program this afternoon, there was a huge truck parked in front of my house. The walkway to the house was full of furniture and boxes so my bus driver had to park in the middle of the street to let me off. My mom had to clear a path for me to get into the house. It seems my portable lift is gone, so she used a ramp to get me into the family room. I won’t be able to get to my bedroom now, but I guess my bed is not there so it doesn’t make any difference. The family room is all different today too. My recliner and TV are gone. The only thing that seems the same is that my usual caregiver is here to feed me dinner and make sure I am clean and dry. Since I didn’t have my TV to watch, I just napped on and off all evening. When it was very late, my mom and dad put me in our family van and we drove to Napa where we stayed in a hotel with a roll-in shower. It is very crowded in our van since my reclining shower chair and portable lift have to ride with us.
July 25, 2013 - Today we are starting our drive to our new home in Mansfield, MA. I don’t really know where that is, but from what mom and dad say, it is far away and will take over a week to get there. We didn’t get on the road until after 12:00 noon. I think my mom and dad blame me for this, since it takes a long time to do my morning care and feed me my breakfast. Since I have always loved going for rides, I think I am going to like this road trip. My dad tells me that we will drive through 13 states so that means I’ll have a lot of changing scenery to enjoy.
The problem with getting on the road so late in the day means that we are doing a lot of driving after dark, and this isn’t really a good idea because mom and dad are so tired from packing and tying up loose ends at our California house. It also means there are less interesting things for me to see, so I just sleep a lot. We also are having trouble going as many miles in a day as originally planned so are off our itinerary. My mom and dad are stressing because some of the pre-paid hotels won’t refund their money when we can’t make it there on time.
It has been interesting listening to my mom make comments about the bathrooms and roll-in showers at the various hotels we’ve been staying at. Some of the bathrooms are very, very small so it is difficult to move my shower chair around in them. One of the first showers we used didn’t have the floor sloped toward the drain so water ran clear out of the bathroom and got the carpet in the room wet. Another one had a big lip to contain the water, but it meant each of the four legs of my shower chair had to be lifted over the lip to get the chair into the shower. A number of showers didn’t have any place to put soap, shampoo, or razors and that irritated her. Mom put together a special bag with all my usual bathing products and laundry supplies so that I will not be at risk for developing skin problems because of using different products every day. Since my skin has been really good the entire trip, I guess that was a good idea.
Most of the hotels where we have stayed provide a breakfast. Mom blends up fresh fruit and yogurt for me. For cereal, she uses as a base whatever is available – oatmeal, pancakes, or waffles. To the base, she adds nuts, some banana, and often a boiled egg to make it “stick to my ribs”. Since I choke so easily, she has decided to blend everything on this trip to reduce my risk of aspiration pneumonia. I don’t mind since I hate the choking episodes when I can’t get my breath. We are usually having only two meals a day with a snack in between. My mom takes the Nutribullet into the restaurants and asks for us to be seated near a wall plug. Then she orders something for me from the menu along with a glass of milk that she uses to blend up my food. Sometimes she asks the server to heat up my food if it ends up being too cold. I know she will be glad to get back in her own kitchen where it is easier for her to make my meals.
July 31, 2013 - Today my mom and dad said that we would be arriving at our new home. It was after dark when we pulled into town, and our first stop was at a grocery store to get a few things for dinner. My mom and dad seemed really happy when we arrived at the house and were able to roll me right into the house because of the outside ramp that had been installed before our arrival. The house is empty except for a dining room table. It reminds me of what our house in California looked like on my last day there. After eating dinner, we had to drive to a hotel and spend the night since there are no beds in our house. We didn’t sleep very well. I think we were all too excited about tomorrow when the van will be unloaded.
August 1, 2013 - This morning my mom bathed me in the new bathroom at our house. Unlike most of those in the hotels, it really is a “roll-in” shower and has places to put things. She seems very happy with it, and I like it too. After getting me dressed, my mom drove me to my new adult day program where I can be a “visitor” for one day while the van is unloaded. I think I am going to like my new program. I guess I won’t be able to go back again until some paperwork has been approved, and I don’t know how long that will take. Unlike California where it took 2 hours to get to my program, this program is only 15 minutes away.
When I got home after my visit to the adult day program, the house was full of boxes. My mom could hardly find a place to park my wheelchair. Shortly after I got home, my brother hooked up the DVD player to the TV so now I have something to watch while my mom and dad are unpacking. This house is much smaller than the one in California, but it’s home now, and I think I’m going to like it.
August 6, 2013 – Today I had my first appointment with my new doctor who will be managing my baclofen pump. My mom had made this appointment about 2 months before we moved because I need pump refills so often, and she didn’t want to risk running out of baclofen. My new doctor was literally “shocked” at how high my daily dose is so wonders if the catheter is working right. We had this checked out just before leaving California, but I think he would like to check it out himself with a more sophisticated procedure. I have an appointment in two weeks for the actual refill.
After my doctor’s appointment, we went to the RMV (Registry of Motor Vehicles) to get a Massachusetts ID for me. My mom can’t apply for MassHealth services for me until I have this. You have to prove identity and residency in MA in order to get this. They accepted an expired passport for the identity, but almost were not going to give me the ID because they wanted something mailed to me at my new address for proof of residency, and I haven’t been here long enough to get anything yet. A supervisor finally changed her mind and approved the ID. My mom was so very happy about that!
August 8, 2013 – Today we went to Taunton to apply for MassHealth. Before we left California, my mom had been calling and talking to the MassHealth enrollment people so she would know how to get my health coverage started right away after our move. She was told that, given my special needs, she could ask for an expedited review and approval of my application. She did this and was told that a decision would be made within 24 hours, and it actually happened.
August 12, 2013 – Today I was able to go back to my adult day program because my MassHealth application was approved, and my program will be paid for by MassHealth. After I got home in the afternoon, a nurse came to our house to do an assessment and document that this program is right for me. I had a good time today at my program, and my mom says that now I can go every day M-F.
Ever since we arrived here, my mom and dad have been lifting me into my hospital bed at night. This is really hard on them and not so great for me either. They barely get me sitting on the edge of the bed, and I feel like I’m falling. In California, we had a portable lift that worked great, but my mom has not been able to make arrangements to get it installed in my room here. She is trying to figure out how to get it approved by MassHealth because the installation quote is $700.00, and, with all the other moving costs, it will be hard to pay for this ourselves. In California, the Regional Center paid to disassemble all three of the overhead tracks for the portable lift plus the platform lift, and that cost about $1,200. She thinks $700 to install just one overhead track is really high.
August 22, 2013 – My mom and dad are all excited today because they have become grandparents. They tell me that I am now an uncle to Benjamin Evan Stretter-Bridgham, my brother Rob’s and his wife Elizabeth’s new baby boy. I like babies so am looking forward to meeting him for the first time. I think this is one of the reasons we moved from California to Massachusetts.
September 6, 2013 – My dad left today for California and the overhead track for the portable lift is scheduled to be installed. On the way home from the airport, my mom got a call from the installer saying he couldn’t come today after all, and she about freaked out because she can’t lift me into bed by herself. The installer offered to bring a Hoyer-type floor lift for her to use temporarily. She is relieved.
Getting a handicap license plate for my wheelchair van is proving to also be a challenge. In MA, they won’t issue a handicap plate unless you are listed on the registration as an owner, so that leaves me out! I can get a placard though so that is what my mom is working on. The picture that they took at the RMV for my Mass ID will be on the placard.
October 7, 2013 – Today the overhead tracks for my portable lift are being installed. My mom and dad are so happy. The floor lift has been working ok, but it is another big piece of equipment that has to be moved around. It stays in the living room during the day and then is rolled into my bedroom at night for the lift into bed. My room is so small, that as soon as I am in bed, my mom takes lift back out to the living room. It will be nice to have our overhead lift back in operation.
October 30, 2013 – I am really feeling at home now at my adult day program. I usually am picked up by a wheelchair van at about 7:30 am and get home about 4:30 pm. At first, my mom was worried because I wasn’t eating everything she sent for my breakfast and lunch. She was getting messages not to send any food some days because I had only eaten half of what was sent the day before. Finally, Ann, the LVN at the program, learned what to do to get me to eat better. I have gained 7 pounds since August 1, and my mom is much happier since I’m in a safer weight range.
The nights are getting really cold now and the colorful leaves are falling all over the yard. It has been a very nice Fall from what my mom and dad say. I hear there will be snow soon. I hope for a white Christmas, something we never had in California.