Robert from California
Hello,
My name is Bob L. I met my wife Alice at Hunter Mountain, a ski resort in the Catskills, in December of 1970. At the time she was a grade school teacher in Newark, N.J. and I was starting my first job out of college as a marketing representative for Getty Oil Company based out of Albany, N.Y. Alice was originally diagnosed with Multiple Sclerosis right before we got married in early 1974.
Essentially, I have been a caregiver for quite some time. Alice had relapsing/remitting MS which gave us a lot of time to make adjustments – which there were many - along the way. Right after we were married I started a new job in medical sales and we moved to Syracuse, N.Y where we stayed for 29 years. We had 2 children early in our marriage while she was still physically active and able to play tennis and ski, participate in girl scouts with our daughter, make Halloween costumes, work part time and even have her own catering business. I assisted Alice with her catering business due to both energy and physical limitations. We were very active in our church and our children’s activities, had a great social life and hosted many parties.
The hard part of the early years, outside of the occasional exacerbations, was dealing with an ever decreasing energy level and the emotional roller-coaster that caused a lot of stress in both the parenting and spousal relationship. Therefore, the early years of caregiving associated with the disease revolved around dealing with family dynamics.
About 16 years into the marriage Alice started needing assistance to walk and went from a cane to a walker to a wheelchair within the year. This necessitated putting a ramp in the garage, widening doorways to accommodate wheelchair access, and putting in an stair chair to go to the second level of the house where our bedroom was located. Alice had tried Betaseron, an early MS injection therapy, which did not work for her and fortunately Copaxone came along later which I feel helped to slow the disease at this point. I had to do the reconstitution and give her the shots along the way. Early on when she was using a manual wheelchair we put a “car topper” on the car and she was able to keep driving. She also got a masters degree from Syracuse University in Rehabilitation Counseling during this time and I was able to help by typing all her papers – most of which she dictated to me in the evenings - after I completed my own work. She then worked as a rehab counselor for a few years before she could no longer use the manual wheel chair or drive when she lost the use of her right leg. Fortunately we had good insurance and were able to get an electric wheel chair at that point. We did not have a van yet so there was now a lot of transferring both in the house and into the car when going somewhere.
At this point we decided to move to California since our daughter had relocated and a whole new set of issues had to be addressed while trying to find an accessible apartment – no easy task 14 years ago and an issue that really still needs to be addressed today. We got an accessible van and found a new complex that had plenty of shopping close by so Alice could still be fairly independent. But about 8 years ago she lost the use of her right hand and needs help transferring all the time. I hired a caregiver to help out in the mornings so I could continue to work. Even though it was expensive, it was well worth it and helped take a lot of stress out of my life. I retired 2 and a half years ago and am a full time care giver but continue to have someone come in 2-3 mornings a week to help out.
We try to remain current on MS topics and I even started an MS caregivers support group that lasted for 3 years until the caregivers couldn’t find the time to attend. I am 70 and fortunately am in very good physical shape so I can do all the transfers and moving positions in bed during the course of the night. I cook and clean, do medical procedures and administer medication. I worry about the future and not only for Alice, but for all people with MS as there are not a lot of options outside of family care that are either appropriate or affordable.
Hopefully this gives you good time line of my 42+ years of marriage and dealing with MS. I feel I could write a book on the topic. If only I had the time!