The Arbors

Robin, our daughter in New Hampshire, began looking around for a suitable haven for us near her. She eventually settled on an assisted living home, The Arbors in Bedford, New Hampshire, just eight miles from her own house. We looked into our financial situation and concluded that we could afford to live there. We could have a two-room suite with bath. At this facility, all meals are provided -- even snacks in between -- full time registered nurses are available around the clock, nurse's aids help with getting dressed, toileting and incontinence, and meeting special dietary needs -- and on and on.

We have been in The Arbors for some months. I am typing this now in the daytime. My poor wife is sick, sick, sick. She was wet but refused help from the two nurse's aids who get her on the toilet. I asked them to come back in a half hour, but right now my poor Peg doesn't feel well and I am on the verge of tears. Sometimes she is most pleasant with the nurse's aids, joking with them and even teasing them -- like the old Peg -- but then the next time she shouts at them to get out, go away, refusing any help. This happens again and again. She says she doesn't need them, she can go to the toilet herself; but she can't even get up out of her chair to get into her wheelchair and be pushed to the bathroom. When her brain does this to her -- at least half the time -- she refuses help; she won't let them lift her up to transfer her to the toilet. After much persuasion we get her into the bathroom, and then she won't let them lift her. If they persist (they are never rough or forceful) she starts to get rigid and strike at them.. My poor Peg.

I think I understand as well as a nonspecialist can that Peg's illness involves an inexorable deterioration in an increasing part of her brain, and that what happens there neurologically controls her behavior. At times, her behavior is relatively normal. She always knows who I am. She tends to be rather withdrawn, naps a good deal. She is at these better times quite loving, and we enjoy smooching. She is even capable of her life-long endearing propensity for teasing. Her wit is exceptional, as indicated by the section on Peg's Jewels which I will include later.

As for her physical condition, she can no longer walk, and has to be lifted between wheel chair and recliner, to the toilet seat, and to and from bed. Her arthritis bothers her constantly, especially in her right shoulder. For the past ten years or so she has had a chronic cough, with a rough coughing spell six or eight times a day, and often once or twice at night in bed. We have had her to several physicians and two specialists and they have found neither anything wrong nor any means of treating her cough. Her eye sight deteriorated to the point that she was about three quarters blind. She could not see her food plate well enough to eat, so for months I fed her, mouthful by mouthful.

Robin and I talked over the possibility of her getting lens transplants for her diagnosed cataracts. We sought out an eye surgeon, who insisted on a general anesthetic for the operation. At Peg's then age of 85 and in her physical condition, our primary care physician here would not consent to a general anesthetic, nor would Robin and I. Fortunately, we found an excellent specialist in Concord, some twenty miles away, who had no qualms about only a local anesthetic, which she had used numerous times on older people, and we decided that even with a certain degree of risk, we couldn't passively accept the inevitable total blindness in Peg's future. The trip to Concord for each eye lens plant involved four times in a special wheel chair van.

Would Peg withstand the operation successfully, and would it restore sight to her eye? After the first (outpatient) eye transplant, Robin and I stood waiting outside the van as they wheeled Peg into position on the lift and raised her into the van. Peg's face lighted up as she saw us through her new lens and waved! For Robin and me, that was one of the happiest, spine-tingling moments of our lives.

After a two month wait, the whole thing was repeated on Peg's other eye, with equally amazing success. As a result, Peg can now quite adequately feed herself across from me at the table, and she even reads parts of the newspaper every morning after breakfast. I am not sure how much of it she really understands, but an occasional comment indicates that she is at least getting the gist of it.

We have now been here in The Arbors nearly a year and a half. I am thankful that there has been relatively little deterioration in Peg's condition during that time. She is still alert when not dozy or sleepy. She still recognizes me and Robin. She responds to questions and otherwise speaks, but has difficulty finding the right words. She was able to walk with some assistance when she came here, but now she can't. She is no more delusional than when we came here, perhaps even less.

The above statements apply until Wednesday, April 3, 2002. Peg's right eye had clouded up somehow so that she could not see out of it. So, we took her back to the eye surgeon in Concord. It was a grueling experience. We had to wait interminably at every stage of the procedure of diagnosis, and when she finally got back to her room at the Arbors she was extremely fatigued.

As a result, next morning when I helped her to stand up from a sitting position on her bed and into her wheelchair, her legs gave out and she fell -- slowly -- but unfortunately her right leg was bent back under her, and she screamed in extreme pain. We got an ambulance and took her to the hospital emergency room where we spent the morning. Meantime I had called Robin, who came to the hospital immediately.

The upshot of the situation is that there are small fractures in her right shin, just below her artificial knee joint. That leg has to be in a caste -- a stabilizer rather than a plaster caste. She is not allowed to put any weight on that foot, so we cannot get her into her wheel chair for normal activities. So, she is completely bed-ridden, with the attendant risks of bed sores and pneumonia. To try to prevent these, she has to be repositioned to one side or another to protect her back. Under normal conditions, this would be most unpleasant; but with her fractured leg bone and major bruises, it is just plain Hell and she screams and the process simply drains her. This, despite the patience and carefulness of the nurse's aids who do it. They do the best possible, but Peg experiences their ministrations as just plain cruelty. She understandably resents going through this process day and night every three hours or so, and just seems to recover from one ordeal when it's time for the next one.

That is the worst. Sometimes she endures this handling and being rolled over, etc., to change her undergarment or bed pads in good humor, talking with the nurse's aids and cooperating as best she can. The next time, she may experience it as a screaming trauma.

As I write this, we are two weeks and two days since the fracture. According to the orthopedic surgeon, she has at least four more weeks to go before she can put weight on it. Then it will be back to the misery for her of being lifted from her recliner to her wheelchair, to the toilet, or to bed. Her needs are greater than this facility can offer, and they have told us we must leave and she must go into a nursing home -- just the situation I have hoped to avoid for decades past. The Arbors administration promises to help us find the best possible nursing home for her, keeping in mind my longstanding determination not to have her alone in a nursing home. We do not know how this will work out, but there is little brightness in our future. I write this on April 20, 2002.

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