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From Alan G. McIlvaine, Scottsdale, AZ
This is a story of the small victories and distress that we experienced in caring for Barbara through the relentless assault of CBGD. It is not a guide on what to do but rather, since this disease treats everyone differently, different symptoms, how we coped with each new devastating symptom. Hopefully it will give others some ideas on what to expect and how to handle it.
Some years before our introduction to CBGD, Barbara and I had decided that neither of us would be comfortable in a nursing home if we became ill enough to warrant it, and the other would do whatever was in his/her power to maintain the ill one at home. I know that Barbara would have felt deserted and would not have received the tender loving care in a nursing home that she did in our home. If you have a close family and there is any way possible to keep the patient at home with adequate care, I strongly urge you to do it. You will all feel better for it. I realize that sometimes it is not possible in which case the caregiver should devote as much time as possible to overseeing that the care being provided is appropriate, adequate and loving.
I have also learned from letters received from others concerned with CBGD and from our own experience that this disease is very difficult to diagnose.
In October of 1992 Barbara and I went back to Eastern Pennsylvania, where we had grown up, to attend the 50th anniversary of my high school graduation. Both of us had attended Cheltenham High School in Elkins Park, Pa. She was a year behind me so her reunion came up in 1993. We visited friends and relatives in the area and then drove up to Danbury, Connecticut where we had lived for about 10 years before our return to Scottsdale, Arizona in 1987. In Danbury we visited with old friends and on one occasion played golf with Ellie and Coleman London.
After playing golf that day, Barbara, with a concerned look on her face, said that she had had trouble gripping her golf club correctly. She had to concentrate abnormally to place her hands correctly on the club. This was the first symptom that we recognized of the early stages of CBGD although we did not know what it was for another six months.
To give you a time frame, most of what follows started in mid 1994. However her first symptoms were noticed in Oct 1992 when she realized that she had to concentrate to make her hands, particularly the left hand do what it was supposed to do. But, it was Oct 1991 that we first noticed her carrying a filled glass on a tilt. Her hands became progressively worse with tremors when ever she attempted to use them, particularly her left hand. It wasnt until early 94 and numerous doctors that the doctors at Mayo diagnosed the disease correctly although as early as December 92 they said it appeared to be CBGD. She died Jan. 20, 1997 at 71 years old.
In spite of the onslaught of CBGD, we tried to enjoy life to its fullest as long as we could. In May of 1994 we took a two week trip to Hawaii including a cruise of the islands. In August of 1994 we exchanged houses for three weeks with good friends in England. We took our grandchildren, Chris and Brook, our daughter Barbies children, with us. Barb had a bit of a problem getting into busses and trains but Chris just got behind her and picked her up and placed her in the bus or train as though it were a normal occurrence. Brook handled the cooking when we werent out for a meal and the house chores, which were not much of a burden. At Christmas time in 1994 we flew to St. Louis to be with Barbie and her family, who lived there at the time. All during 1994 Barb could barely use her left hand for anything. We went to restaurants fairly often and I would instruct the waiter to cut her food into bite size pieces before he brought her plate to the table.
Barb was an excellent bridge player. In fact she was certified by the American Contract Bridge League as a Director to run duplicate games and she had a ton of master points. She continued to play competitive bridge until about the end of 1994 and played in neighborhood and senior center games throughout 1995. I had made a card holder for her and the later part of 1995 she needed assistance arranging her cards. This convinced her she could no longer play and it was a bit emotional when she had to tell some of her bridge partners. I point these things out only to demonstrate how quickly her condition deteriorated.
Barbara started falling before most of the other symptoms showed up. She would just suddenly lose her balance and fall, usually backwards. While she was still quite mobile and seemingly good shape she took several vicious falls. Once while she was walking around the neighborhood for exercise by herself she fell and hit her face and left arm on the curb. Fortunately a neighbor saw her fall and rushed to her aid while her daughter called 911 and me. She had a large gash right at her left eyebrow and her arm, face and knee were bruised and skinned. There also was a slight skull fracture at the eyebrow line. The doctor at the emergency room did a great job stitching up the eyebrow wound. After about a month it was barely discernible. Barbara said that as she came around the corner the sun caught her right in the eye and she could not see, resulting in her tripping over the curb. In retrospect, we know this is not what happened, she lost her balance. Another disastrous fall was when she fell backwards off about the third step in a tri-level friends home. She did a back swan dive onto a ceramic tile kitchen floor, flat on her back and her head whacked the floor in a sickening thud. It turned out that she had fractured 3 vertebrae between her shoulder blades. This hurt her for the rest of her life but she rarely complained about anything. She showed very little evidence of osteoporosis so her bones were not in jeopardy from minor bumps. We soon realized that we could not let her stand or walk alone. Someone had to be close enough, usually holding her, to prevent further falls. She still had a few backward pitches. Barbara was small to start with, 5 4 tall and about 130 lbs., so it was not difficult to hold her or pick her up. She lost weight rapidly over the last 10 months-down to 80 lbs. She also would miss the chair, usually to the left, when trying to sit down. I finally had to tell her that she could not get up and walk without someone with her. It was too dangerous. At first it was OK for someone to just hold her elbow and keep her steady but also be prepared to grab her if she started to fall. The control of her walking increased to where we walked behind her and with hands holding her on the side of her ribs, practically carried her. This progressed to where she was totally wheelchair bound to move around the house.
We leased a wheel chair, the type they call companion chairs because someone must push it, there are no large side wheels for self-propulsion, because Barbara couldnt use her hands or arms. Also, the chair was narrower with only 4 small wheels. Didnt wreck the house as much as a larger one would have. Medicare paid for the lease of the wheel chair through Osco Drug where we got it.
We then bought a reclining chair that had a motorized lift that would lift her to a standing position and vice versa, she would stand against it and be lowered to a sitting position. In spite of her light weight it was tough on my back and our daughters back to have to pick her up many times a day. The chair came in handy. When we asked if that could also be charged to Medicare they said no, because we already had a wheel chair. It would have been better to charge the recliner chair to Medicare because it was more expensive than the wheel chair.
All during this time I would occasionally take her, using the wheel chair, food shopping or a few times to dress shops to just look at the new styles. Quite frequently I would take her over to our daughters house for a meal or several hours visiting the family. After my operation when I could no longer manage and Barb was becoming even more dependent, Barbies husband, George and her son, Chris, both big strong guys, would pack Barb in their van with all necessary chairs and equipment and take us over to their house for an afternoon and dinner. Granddaughter Brook and grandson Chris would help their Mama with eating and what ever else was necessary. I believe the last time was January 16, 1997 with oxygen tank, wheel chair and all.
There was a period when she had to go to the bathroom constantly, sometimes as often as every 3 minutes for a period of hours. By this time she could do nothing for herself.
Barbs left arm became practically unusable by the end of 1993. Her left hand had tremors when ever she raised it and sometimes her entire body appeared to shake. She said that she felt shaky at times. Barb could not do things that she could do a month earlier, for instance, pouring juice from a pitcher or putting instant coffee into a cup. Putting on jackets or sweaters was impossible. She needed assistance getting dressed. She could, with great difficulty, take hold of something with her left hand but then she could not let it go. It had to be pulled from her grasp. She also seemed more susceptible to temperature variations and was frequently fatigued. Barbs left hand later, 1995, became rigid and sore. It was frozen against her breast with the hand clenched and the forefinger sticking straight out. We did not think about Barbs rings until it was too late. We had to have them cut off her left hand fingers. The local fire company rescue squad did it competently and cheerfully.
Finally in late 1996 Barb was given Botulinum toxin shots in the muscles of her left arm and hand. This eased the tension in the arm and hand and lessened the pain but of course, could not improve function. When her hand became frozen in a clenched position it was necessary to keep the skin on her palm healthy and from being pierced by her fingernails. It was difficult to keep the nails trimmed due to her clenched hand. We had to force it open enough to allow us to trim the nails. It pained her when we did this but it was necessary. We constantly kept skin ointment or powder on her palm and after several attempts at making a brace to keep her hand partially open failed we kept a thick, between 1/8 and ¼, piece of soft but tough plastic between her palm and fingernails.
Sometime along the way, when Barb could no longer wash herself, because her hair covered her ears, I neglected to keep her ears clean. I was shocked when it was discovered, you could have planted potatoes in her ears they were so dirty. You can bet they were cleaned every day after that.
From March through May of 1995 Barb suffered from Obsessive Compulsive Disorder. Apparently this can occur when the ganglia is attacked. This manifested itself with Barb in a manner that caused her to be constantly picking specs of dust or imaginary specs of dust from her clothes and dropping them on the floor. Another thing she did constantly during this period was to struggle to take a Kleenex from her pocket, brush the tip of her nose with it and then struggle to get the Kleenex back in her pocket. Many times she did not even touch her nose, just passed the Kleenex past her nose. It drove the rest of nuts until we realized what was occurring, we asked her frequently not to do that and she, after about three months, eventually did stop. We were all relieved, including Barbara.
At about this time, May 95, I reported to Dr. Casselli that Barb was usually quite tired, not much energy and didnt sleep too well. She had problems eating; said she felt as though she had to regurgitate after eating only about a quarter of her meal. Her weight was down about 25 lbs. in the last year. She had also been afflicted with diarrhea frequently and her speech and responses were deteriorating.
We, our daughter Barbie and I, decided in early 1996 that we needed help with caregiving. Barbie was home schooling her two kids and spending a lot of time relieving me from caregiving. The schooling suffered a lapse but I needed relief, mostly to get some sleep and food marketing. The social services offices at both Mayo, Scottsdale and Scottsdale Memorial Hospital provided recommendations about caregiving organizations. We were fortunate in contacting a local, small organization called McCormick Ranch Caregivers. It was founded by two retired R.N.s who did it because it was needed. They ran it with some minor assistance from a local church. They screened the patients requirements and provided a caregiver who fit the requirement. The two R.N.s took no pay, they recruited the caregivers, trained and supervised them. The caregivers were also women who were more concerned with caregiving than pay. They charged $7 per hour and were excellent. (For reference, I believe the federal minimum wage was about $4.50/hr.) We hired them for several afternoons a week and gradually increased it to 5 afternoons per week. About that time I hit the wall and was dragged, kicking and screaming, into the hospital for an emergency heart bypass operation. Due to complications I took much longer to recuperate than anticipated. Consequently I could not take an active part in caregiving again. In fact I became an added burden to the already overextended daughter and caregiver crew The McCormick Ranch Caregivers could no longer support the amount of help we needed so at this point, end of Oct. 1996, we hired full time, around the clock, caregivers. At our daughters suggestion, our doctor at Mayo recommended that Hospice get involved. Again we were fortunate. Hospice of the Valley here in the Phoenix area helped us tremendously. We also found a very capable woman at our church, Mrs. Joan Page, who had a good deal of experience in caregiving. She took care of her young grandchildren during the day and took care of Barbara from about 5P.M in the afternoon, when she relieved the daytime caregiver, until 9 A.M. in the morning when the daytime caregiver arrived again. The night time caregiving consisted of: preparing dinner for and feeding Barb. Dinner at this point consisted of Ensure and pureed food (found a small, about 1/3 regular size, blender that was perfect size for small qty). She took Barb from the recliner chair, put her in the wheel chair and wheeled her into the kitchen and up to the kitchen table. Barb could not help herself in any way at this point in time. She took Barb to the bathroom as frequently as Barb had the inclination, which was often. Transferred her to the toilet seat, cleaned her and brought her back to the recliner chair. We usually had Barbs favorite TV shows on but dont know if she saw them. Actually she was not a big TV fan but did have a few shows she liked, Trivia, Wheel of Fortune , Wall Street Week and news. She did listen to Rush Limbaugh on the radio. She was basically unable to speak during this period so we ended up almost playing charades trying to figure what she wanted. At night she would wash her and handle all the necessary toilet requirements and put her into bed. There was another bed right next to Barbs in which the caregiver slept, so she could attend Barbaras needs during the night. In spite of taking her to the bathroom at her slightest indication there were many accidents. We had to resort to Depends (adult diapers) and disposable bed pads which were used not only on the bed but also on the recliner chair. Both caregivers were qualified to dispense medicines so they handled that also. The first duty the day caregiver had was to get Barb up from bed, shower (on a special chair supplied by Hospice-it was on wheels, had arms for safety so she wouldnt fall out and the seat doubled as a high toilet seat), dressed and wheeled her into kitchen for breakfast. Same thing for breakfast, Ensure and pureed food. Then to the recliner chair and bathroom as required. She then, when time permitted, washed the sheets and bed clothes and any other laundry. She took care of Barbs lunch and sometimes read to her, we think Barb listened. The daytime caregiver was from an agency so we paid $15.00 an hour to the agency. The night caregiver was independent and we paid her $10.00 an hour (which was more take home pay than the agency CG made at the $15 rate). We had to fire several of the daytime caregivers from the agency until we found one that was capable and dependable. The one we settled on was a young woman who was uneducated in the classical sense but had been trained very well in caregiving and dispensing of medicine. She was very considerate, compassionate and happily tackled any job that was required and some that were not.
Hospice of the Valley provided all sorts of assistance. Barbs Medicare was signed over to them and they assumed all charges from then on (not including the cost of caregivers-we had insurance for long time care but it only paid $50 per day for care at home whereas the total came to $285 per day). First and foremost they provided very competent R.N. service as often and as frequent as needed. A regular nurse was assigned to us. She was excellent and came once a week on a regular schedule. She kept in contact with Barbs doctor, Dr. Caselli, and kept him up to speed concerning Barbs condition. He in turn would advise her, Mrs. Debra Traub, R.N. of specific care or medications. We would call the Hospice nurses for help and advise or instructions at any time and if necessary, they would come to the house. Hospice provided, at Mrs. Traubs request, a fantastic air bed with a motor control that rolled Barb over to one side, then returned to her back and then to the other side at variable time intervals that you could preset. Barb was unable to move in bed and this was a tremendous relief for her. Barb began to have trouble breathing and Hospice provided an oxygen generator and necessary tubing and nose pieces for administering the oxygen. They also provided emergency tanks of oxygen and appropriate tubing and face/nose assembly in case of a power outage or if we wanted to take Barb out of the house. Barb started to accumulate mucous in her throat and lungs to the extent that on at least one occasion we had to take her to the hospital emergency room for suctioning. They were able to relieve the problem satisfactorily. Hospice then provided a suction machine for us to use when necessary. All the caregivers including daughter Barbie and I were instructed in use of the various equipment that Hospice provided. Hospice provided all medicines required whether prescription drugs or not and had them delivered to our door at any time of day or night.
Medicines: During the last month or so the pain from her back and rigid, tensed muscles became quite severe and we resorted to Morphine to ease it. Prior to the morphine we used ULTRAM for pain relief. We used a patch with slow release medication, Scopolamine, that helped control the mucous and we doubled up on the sleep medication, CHORAL HYDRATE liquid, so Barb could sleep through most of the night. Thereafter she slept about12 hours at night and a good deal sitting in the recliner chair during the day
Barb had difficulty swallowing and problems with gagging when eating for at least the last year. Pills were crushed and put in the Ensure so she could get them down. It was necessary to make sure she was getting enough liquids and calories.
During the last few months she had great difficulty both urinating and with bowel movements. On one occasion she became so constipated that we had to take her to the hospital emergency room for medical assistance to get her relieved. It was necessary to use laxatives and to keep track of her progress. To do this we devised a chart that the caregivers filled out. Barbs tummy also became extended and hard during this period.
For some unexplainable reason, during the last 2 weeks Barbs speech improved to a point where she could communicate again which was a surprise to us all and she seemed to feel much better. We even perceived some movement in her left arm.
The afternoon of Jan 20th Barb was sitting in the recliner chair. Lasandra Fields, the daytime caregiver, was sitting on one side of her gently rubbing Barbs tummy and I was sitting on the other side rambling along talking about what ever entered my brain when Barb announced, with more than a chuckle, more like a laugh, that she thought that she was going to have a baby. Lasandra almost fell off her chair laughing and I announced that I was too old for that kind of nonsense and if she was going to do that she would have to throw me out and get a younger man. All three of us had a good laugh. I only bring this out to show you that even at this late stage of CBGD she had alert perception of what was going on and still had a good sense of humor.
All through this ordeal I never heard Barbara complain. She was more stoic and courageous than mere mortals have a right to be. Im sure her strong faith in God helped her through this traumatic time. We were married 48 ½ years. She was a Perfect Lady in every sense of the word and I loved her dearly.
After her death, her brain was donated for medical education and research. In excess of $5000 in lieu of flowers was donated to same for research on dementia.Alan G. McIlvaine
TIME LINE DEPICTING APPROXIMATE PERIOD WHEN DIFFERENT SYMPTOMS FIRST BECAME APPARANT WITH BARBARA