I have several friends who are, or have recently, had to go through dealing with a parent with Alzheimer’s. Ugh. Double ugh. But the question of what does this mean for me lingers. My first grandchild (!) is due in August. I have been trying really hard to be a good mother-in-law for my daughter-in-law, avoiding some major pitfalls (I hope) that my mother fell into big time. Similarly, I hope that I can be a good grandma. A lot of it has to do with being a positive presence; it’s so easy for one generation to criticize the next because they aren’t’t doing things “the way we used to” or “the way I know you should.” But I can remember times sitting in my son’s living room feeling as though I were my mother, her presence was so palpable, and trying very hard not to act the way I knew she would have. Like it or not, those templates got laid down early and reinforced. Then, of course, you can run into problems trying to do everything differently….

Throughout the last ten years of her life I think she believed in her heart that she was still the competent and resilient person she had always been. I really don’t think that she saw herself (as I did) as an increasingly frail old lady. One of her problems was macular degeneration, so she actually didn’t see herself too well. Mother moved to a house in center city Philadelphia in 1971 and lived in that house until the end, in spite of my concern over her safety. She remained very alert mentally — one thing that enabled her to live alone. Another factor was the city lifestyle, which makes driving unnecessary. She sold her car within a year of moving to Philadelphia and never regretted it.

Her life was effectively ended by a massive stroke, though she survived for a few weeks. From that I learned what they mean by “complications of a stroke.” Lynne Moody helped me sort out the situation; it’s hard to read between the lines of what the doctors tell you and wonderful to have a college roommate who is an M.D. I speak only of my mother because my father died when I was just two years old.

After my Mom had the stroke, my brother, sister-in-law, and I took over my Mom’s business affairs. Her two sisters (now ages 70 and 77) and her brother-in-law (age 77) helped out. As did other employees and friends. My Mom was adamant about not going into a nursing home. Fortunately, she had enough cash and assets to make full-time at-home care feasible. I think the decision to remain in her house was a very good one and has made her life as pleasant and comfortable as possible over the past six years.

It has been a constant balancing act–in terms of finances, personnel, time, and emotions. My brother (age 57, who has had serious health issues of his own during this six years) and my sister-in-law have taken the brunt of the work and worry, since they live very near to Mom; but I have helped them as much as possible, especially during the first year, when Mom had to spend several months in hospitals and rehab. Now I go to New Jersey twice a year and relieve them for a week or so in the summer and at Christmas. Both of my aunts and my uncle have contributed tirelessly (but also for some remuneration). It is simply too much work, time, and coordination to do for free, when my Mom does have financial resources.

Another issue is that many of the relatives helping out also are aging, with sometimes serious conditions. In this case, especially my brother, two aunts, and uncle–and cousins. So one person’s serious illness does not occur in a vacuum. I, at nearly age 60, have had a stream of minor health issues for about three years, as has my husband, nearly age 65–and his family in California, too, have had serious and minor illnesses.

I happened to go the doctor with him this winter and the doctor pointed out that he was grieving over the life he could no longer live and that that was appropriate, only my father was not able to move beyond anger to get to some kind of acceptance. That was helpful to me to look at it that way. He also pointed out I was grieving too, that my father was going to die and leave me and that is why I was so angry.

My parents are still in their house. It takes 9 people to keep them there. They have made no concessions to age or even to living in the 21st century. Most people think they are wonderful; well, they aren’t their parents! My mother has developed heart problems, and she is the one who manages everything still. I don’t know what will happen when one of them is left alone.

We feel like we lost her on December 27, just after midnight in the wee hours of a Friday morning, sixteen inches of new snow covering the traces of Christmas. But in those hours, and in the days and weeks that followed, we didn’t know but only hoped she could come back, so we carried on. We improvised and advocated. We cried and raged. We mourned and comforted. And did we ever learn a lot about the nitty-gritty of getting old and sick and dying.

Her ashes are still in the bottom cabinet of her china cupboard, which now sits in the corner at my house. I look at her English Spode (Florence pattern) and remember so many dinners at home in Wayne, gathered around the holiday table set with these very dishes. Last Thanksgiving they graced our table here for the first time. We used the tablecloth I had brought her from France. My sister and I cooked. Daddy came for the afternoon and we played cards after dinner.

His executive function is pretty well shot, but he can still play Uno. He lives nearby at a Senior Retirement Residence, where he goes to the dining room with a rolling walker. His physical health is pretty good, but he sleeps most of the day. He watches some sports on TV and still remembers which teams he wants to win. But ten minutes after the game ends, he can’t recall what happened.

Wendell (my dad) is now about 3 months older than Ramona was at the time of her stroke. Until the winter after his 86th birthday he still lived alone (except for the diabetic cat Tango) in the 10-room house in Wayne where I grew up. And he still drove to work at a friend’s law firm in the Great Valley four mornings each week. He ate hot meals at Minella’s or at the Villanova Diner. He bowled at Devon Lanes on Wednesday mornings and with the church league on Friday nights, amazing the surgeon who put a titanium joint in his hip in 1996. He was captain of a team of volunteers who staffed Bloodmobiles for the Red Cross. He visited his younger brother in Villanova to read aloud from the local weekly papers, since Philip is almost totally blind from macular degeneration.

One Thursday at work Daddy fell off his chair and ended up in the hospital. The only telephone number he could remember was mine in Maine. I drove the eleven hours in one day, missing the funeral of a close friend whose last emotional days dying of breast cancer had left me feeling bereft and numb. And on October 1, 2001 another surgeon placed a cardiac pacemaker in his left chest. He recuperated in Maine but never did get the hang of taking his blood thinner medication. His cardiologist in Paoli finally agreed in exasperation that none at all would be better than the haphazard doses he was taking.

Gradually over the years he had stopped opening his mail. He often would not answer the phone. He bought food, but on my visits from Maine I would have to empty the spoiled remnants from his refrigerator. His diet consisted mostly of sugar. He took his dress shirts to the cleaners and did his laundry at the Laundromat after his machines at home quit working. We hired someone to come in twice a day to give insulin injections to the cat and take care of the litter boxes.

When I came, about four times a year, I opened his mail and gave him the bills that needed to be paid. Eventually I had to write the checks for him to sign, then put them in the mail myself. I don’t know in retrospect what part of the decline might have been attributable to the erratic heart rhythm with rates as low as 35. At my insistence (and expense) we went to see an attorney who specializes in Elder Law. He made a new will and executed durable powers of attorney for business and health matters. He and my mother had the deed to the house transferred into my daughter’s name, retaining a life estate. We even visited the Social Security office so he could designate me his personal representative.

After a fall in an icy parking lot that dislocated his (dominant) left shoulder, he spent a week in another hospital on the Main Line. That time I took the bus to Boston and then Amtrak past my daughter’s house in South Kingstown, Rhode Island and on to Philadelphia. Somehow I convinced the social worker, the doctor and myself that he could rehabilitate just as well at my house in Bangor as in a skilled-care facility in Pennsylvania. I packed his clothes and all his papers in his car, made arrangements for the care of the house and cat through the winter, and whisked him directly to Maine two weeks before Christmas. Within days we knew we needed more help than the weekly visit from a home physical therapist, plus a personal care assistant to give him a bed bath twice a week. The days between Christmas and New Year’s—the same week my sister and I sat 24-hour vigils at our mother’s bedside to fend off well-meaning medical personnel who would try to apply lotions and creams to which she was allergic (and unable to speak)—we made regular calls to the Maine Veterans’ Home looking for a bed for Daddy in the skilled unit. He finally was admitted on December 29th and stayed six weeks. He never saw Ramona again until the day she died. But we did have a truly amazing family Christmas to remember, the first in many years with both parents and both daughters together.

Two years ago we persuaded him to give up his driver’s license and turn his car over to my sister’s 18-year-old daughter. After a two-week trip to Pennsylvania, during which we replaced his old oil burner with a new gas furnace, had some rewiring done and some walls washed, he seemed to accept the reality that he would not be able to manage by himself. I had taken him to visit Sunbury Village before we left Maine, and we had put a deposit on the only efficiency apartment remaining on the first floor. I rented a minivan for the trip so I could bring back his almost new leather recliner and some other small items to furnish his room. I packed his summer clothes, waved good-bye to the angel who took care of Tango the cat for another year (until April 2004, when kitty finally came to live with Daddy in Maine), and off we went.

It has been a fairly seamless transition. For almost three years I have kept all of his financial records. His granddaughter Grace worked her senior year of high school as a server at his retirement home. He attended her graduation in June 2004. He gave her his 10-year-old Cavalier. We schedule and drive him to all appointments. His granddaughter Emilie, after consultation with him, me and the lawyer, has assumed all responsibility regarding the property in Wayne and has undertaken major renovations. By this summer its restored loveliness should be ready to house a new family. She has even planned central air conditioning for this aging but elegant beauty. We may hold a giant yard sale there over Memorial Day to empty the two storage units of 55 years’ worth of accumulated miscellany. [If anyone knows people looking for a house to rent in North Wayne, let me know!]

I realize now that I needed the 27 weeks between stroke and death to say good-bye to my mother. I am still saying good-bye two years later, and I don’t know if I will ever finish. I miss her unbearably. So, I am more conscious in my brief visits with Daddy, four nights a week when I stop by to give Tango his dinner and insulin shot, that when I fix his hot chocolate and give him his vitamins (he has developed macular degeneration in one eye in the past 18 months), I am saying good-bye to him. When I bring his mail, fold his clean clothes, balance his checkbook, find the basketball game on TV, or plant a kiss on the top of his head as I leave…I am saying good-bye. It’s a little, quiet good-bye. Loving, but not dramatic. And I’ll feel good later about how I was able to help him live in a dignified and relatively independent manner much longer than would have been possible alone.

At the same time I am learning how to say good-bye to my husband. He celebrated his eighty-first birthday in January and a week later heard the results of his repeat CT scan. [After surgery to remove colon cancer in July 2003, which we thought and hoped was curative, he took chemotherapy which made him very ill. For more than a year we believed he was free of that challenge. Then a blood test in October indicated possible reactivation, and the CT scan showed two spots in the liver and maybe one in the lung. His oncologist explained there would be no cure, and gave us six to eighteen months.] In these three months, thank goodness, there has been little change and he continues to feel well. His attitude is tremendous. He is grateful for a long life and many blessings and will squeeze the last drop out of whatever is left. We talk about feelings. I am recording him telling some of the stories of his youth. But every day feels like another little good-bye. Some tiny voice inside asks, “Will this be the last ___?” and in some corner of my heart I chide my unwillingness to watch him face his end so bravely. Twenty-six years isn’t a very long time to be a couple, but we have packed a lot of living into them, and I am not ready to let him go.