Child support for Phil from Tina’s ex-husband ended after about a year. To me, this was not a big issue, just characteristic of a certain type of man.
The Multiple Sclerosis Society Support Group in Mt. Kisco (near our Bedford Hills place), c. 1985, was pleasant and encouraging. Friendships developed there that lasted years. Still, the newly diagnosed seemed not really happy to see the whee chair-bound members. Too scary. Cognitive losses can create complications. The more you might benefit from such a group, the less able you are to be involved, and perhaps the less willing the group members are to be involved with you.
In April 2011, I received a card from the National Multiple Sclerosis Society’s New York City/Southern New York Chapter, inviting us to register for support groups, one or more of sixty possible choices, to meet for 90 minutes at a session in one of the five boroughs of New York City, some seventy miles south of us. The front cover lists these 17 of the 60, none of which seemed likely to be worth the trek to the city:
—But You Look So Well
—Caregiver, Partner and Family Groups
—Children who Have Parents Living with MS
—Grupos en Espanol
—Lesbian, Gay, Bisexual or Transsexual
—Living with MS
—Newly Diagnosed with MS
—Opting for No Treatment Now
—Orthodox Jewish Women
—Pain and Spasticity Management
—Professional Working Men
—Residents of Nursing Homes
—Twenty [sic] and Thirties Networking Group
To be less critical, I might have found worthwhile the “Caregiver” or “Cognitive” or “Stress” groups, had they been nearer to me.
If you choose a country setting to “get away from it all,” you must not be surprised if you have gotten a bit too far.
Our friends at Ledgewood Commons (Wendy and Zane, Ruth and Mal) were good company and remained our friends ever since, real psychological support. Wendy’s piece in the section at end of the book describes the kind of emotional support that she and Tina gave each other. Ruth was kind enough to accompany Tina and me to church and ended up converting from Judaism to Christianity, with Tina’s sponsorship. Zane and Mal and I have remained good friends, and their visits to us usually include a walk around Lake Osiris and the settling of the political and economic affairs of state, nation, and world.
Emails help, too. We have a few steady e-correspondents.
“A friend in need is a friend indeed.” That must mean that someone who helps you when you need it is truly a friend. It can’t mean that one is more attractive as a friend when needy. Our friends have had a mixed record. Types of support include calls, letters, visits, holiday cards and presents. Some have come through. Some have not.
Neighbors have helped occasionally, but we can’t reciprocate, and we do not request it. Sometimes the coming and going of our nurses inconveniences neighbors, but they do not complain. We do appreciate it and thank them warmly.
How about relatives? By the time MS gets truly difficult, after one is 40 or 50, parents are often too old, perhaps no longer alive or are absorbed in the problems they and their other children have. Tina’s parents made several monetary gifts to us, representing 10 to 20 percent of our income in those years. The trust fund in their wills represents another few years of income, should it be needed for Tina’s welfare. Very generous and much appreciated. Tina’s brother and his wife and their children have visited on the day after Christmas each year, driving from her parents’ home in Delaware, and giving us nice gifts, including a microwave oven for our kitchen and a flat-screen HDTV for Tina’s bedroom. We appreciate it. Her relationship with her sister has long been less warm, so little is expected there.
IBM has been wonderful. We are thankful for all their help. We wish them continued prosperity. Obamacare has us worried, as some companies are choosing to dump their obligations onto the public plan. Such a plan is not going to cover our in-home care 24 hours per day.
After my mother cracked a pelvic bone, we were able to transfer her here from the hospital after a few days. Medicare provided a half-dozen physical therapist visits, after which they stopped, my mother having been “treated,” though not greatly improved. My sister has been a big help. Two of my three brothers have contributed to a portion of the added costs.
In talking with our staff members, I learn a common story: one child carries most of the responsibility of caring for parents; the others do not. We’ve done better than that.
Granted, if you marry someone, you are taking your chances, “for better or worse, for richer or poorer, in sickness and in health.” If you choose to create children, you are signing up for decades of responsibility.
We do think, Tina and I, that children have a responsibility, an obligation, from love and duty, to assist their parents in times of need. We hope ours will not have to be called on to sacrifice for us.