“Another Step”

         Last week I pulled out the calendar to check any appointments for my mother and found that three different doctors had scheduled her for checks. Two required blood work prior to the visits. Counting quickly, I realized that I would have to drag Mom into and out of the car ten times within a couple of weeks. A year ago, this kind of schedule wouldn’t have given me pause. Not this time around.

         I called the nurse for Mom’s Internist and told her that after each lab run or doctor’s visit, Mom has set-backs. The last few times she hasn’t fully recovered.

         “Is there some service that we could use where a nurse can come to the house to at least draw Mom’s blood?” I asked once I explained my concerns.

         Now, this nurse has always helped me load Mom into the car after her doctor visits. She knew exactly how difficult movement can be for Mom. She paused as she considered my request, and then said, “I think it’s time for us to start your mother on home health care. I’ll take care of the initial paperwork. You’ll get a call from the company we like to use within a couple of days.”

         And so began a flurry of activity. By Monday, a nurse from the home care service went over the professional help offered by their company. Nurses, occupational therapists, physical therapists, and aides for daily living all applied to our needs. The next day, an occupational therapist sat at our table after looking at the accommodations we had in Mom’s bathroom and checking out how she slumped in her wheel chair. She jotted down a list of immediate changes and brainstormed what we’ll need as Huntington’s disease continues its progress.

On Tuesday, a physical therapist stated that Mom’s muscles are better than his other HD patient. He has stretching exercises that he will try with her. Of course, he’ll teach me how to do them so I can continue working with Mom if this service only lasts sixty days. He also showed me a different way to lift Mom that doesn’t strain my arms or back! I hooted and punched the air with my fist after successfully mastering this new maneuver. The PT suggested a different type of toilet seat, too. That arrived yesterday. I haven’t tried using it with Mom. I figure she’s endured enough changes in the past few days. When the PT comes next week, we’ll tackle the toilet.

On Wednesday, the company that has home visiting physicians sent out two nurse practitioners to conduct a full examination on Mom. One of the nurses already sees three other HD patients! Suddenly, I didn’t feel alone in this journey. She asked all of the right questions, made all of the right observations, and I relaxed instantly knowing that she’s been assigned to Mom’s team. These nurses took Mom’s blood while they were here. No more trips to the lab! Using these visiting physicians means Mom will no longer see her Internist, a doctor we’ve trusted and admired. However, his office is the one who made the decision that we needed to make this change. I no longer have to worry about dragging Mom into a doctor’s office for well checks. If she has a cold or bladder infection, someone will come here to her. Even with this first visit, the nurse noticed fluid in one of Mom’s lungs. She ordered a chest x-ray that will be done here. She wrote a prescription, explained to me how to use a nebulizer, and said aspiration is our biggest worry. I figure she saved us another ER visit by her intervention. Immediately, I can see how this type of program could actually reduce costs to programs like Medicare. These nurses or a doctor from the team will automatically visit Mom once a month. Of course, Mom will still have to see her specialists—the neurologist and nephrologist—but if she’s ill, these doctors will come to the rescue. Maybe we’ll make it a year without an ER run.

Thursday brought another nurse to double check Mom’s lungs after she checked Mom’s blood pressure, pulse, oxygen and temperature. She’s been assigned to swing by every week. She has also worked with HD patients and made the suggestion that we needed to thicken all of Mom’s fluids, which we haven’t done yet. Mom aspirated water about a week ago (the cause for her current lung problem). This nurse said Mom looks like she’s drinking fluids fine— sometimes—but not always. The thickener will help on those bad days. Since we have no way of knowing when that happens, we just have to add it to everything. A positive about the thickener is that it does carry a few calories!

Friday brought an aid to help with Mom’s showers. When Mom first moved in, I could manage her showers or baths alone. Gradually, her legs weakened to where David had to be the one to give her baths because he had the strength to lift her out of the tub. Recently, she’s become so rigid that David decided we’d have to go back to having her sit on the shower bench. Her stiffness makes it impossible for one person to get her into the shower alone, so Mom had to wait until David’s return from work to bathe. Now she can get one during the day, when she’s not as fatigued.  

With all of these experts whipping into our household, we’ve realized that many of the devices we purchased for Mom’s use two years ago are no longer the best options. Her wheel chair may need added cushions, if it isn’t replaced altogether. The toilet seat and shower bench both need different models to accommodate her continuing loss of mobility. Three members of the team mentioned changing out Mom’s bed for a hospital bed. I told them we needed to let things settle a little before making that major change. Mom loves her white wicker head board, and I don’t want to force too many modifications on her at one time.

I find that I still fall into bed, exhausted, each evening. However, all of the worries about whether I can handle the next level of Mom’s care haven’t nagged me this week. We no longer face this disease alone.    

 Copyright 2012 Elizabeth Abrams Chapman