Shut Out

It's been quite awhile since I've posted, but not for want of activity. Things have been over the top in issues surrounding Mother's care, but they have been issues with another family member so I am not at liberty to write about them in a public blog. At such a time, I hope that Mother is as unaware as she seems. She was always so precise and organized, especially on financial matters, that she would have a cow if she understood.

In any case, I will only say that I am now the guardian of her estate. We'll leave it there.

All my visits of late have been to huge state and federal bureaucracies on her behalf, so it was only yesterday that I was able to see her instead of just her social security number. I met Rob up there and picked up a packet of doctor's information. Not that there's anything new, I just haven't had access to such a report since 2006. Along with the Alzheimer's and Parkinson's, it says she has a humeral neck fracture. I think that must have happened that time at The Birches when she broke her arm. Probably why she lists to the right.

In the last couple of weeks I've caught myself sitting at my computer...listing right. I straighten up in a panic!

When Rob and I arrived they were wheeling Mother back from lunch. They brought her into the TV room where there were a lot of others, more or less watching TV, and where there were a couple of other chairs for us to sit and visit. Rob was the first to notice that, for the first time in as long as I can remember, her glasses were not sliding down her nose. They might even have been new glasses. Hooray for that!

Of course the irony was that her eyes were shut. For the entire one hour and fifteen minute "visit." They were shut when we saw her from a distance being wheeled toward us, and she never opened them. They looked purposefully shut and her brow was furrowed, even as her jaw continued its independent, spasmodic life. But she was not asleep. She did not appear actually tired until the end of the visit when she yawned some. As we sat there trying to get her to open her eyes I thought she might have been tired from a morning visit and said, "Maybe David was here this morning." She instantly said, "No." She spoke only one other time during the visit...two words that were much softer and that I didn't catch later on.

In that later part of the visit (which is when this picture was taken) she seemed more relaxed. She also was doing some odd things with her left arm. Her right isn't much good. She lifted her whole arm up and out as if to take something out of the air. Did that twice. Each time I went over to her chair, took her hand and put my arm around her, but she didn't respond. And of course didn't open her eyes.

So I think she was elsewhere. Somewhere more pleasant. Maybe she was in some pain earlier that furrowed her brow and she decided to get out of Dodge and go to wherever souls go when they need a break. Of course she was also in a different room. The TV room was more and more crowded so we went out to the lobby area.

You can see in the picture that her hair is down to her shoulders. The last picture of her with hair that long was when she was about 6. She has always worn it quite short. So Rob and I arranged for a haircut and showed the staff a picture of how she has always worn it. We checked out her clothes and found an odd assortment of things, including some very frilly blouses. Nothing looked really comfortable. I turned to Rob and said, "Should you ever be caring for me in a situation like this, give me sweats. I want comfort. And do not, under any circumstances, force me to wear a bra."

As we went to leave, I gave her a kiss and she kissed back. But she never even once opened her eyes. Maybe she does have new glasses and they're giving her a headache. But I think she travels somewhere else--to a place that is green, with flowers. To a place where her mind comprehends and where her only guardian is her Lord. One day she'll stay there, and I will not try to get her to open her eyes.

Thanksgiving

Okay, so she looks ornery. Like you don't want to be slow with her turkey. But unlike so many Alzheimer's sufferers, she has never had that mean streak take over. Although you can't tell that from this picture.

This was taken today at the Clough Center. Instead of having a Thanksgiving celebration on the actual day, they had it today. And they had their act together. I drove into the parking lot about 10 minutes before 12 and was greeted by a parking attendant. He directed me to the next attendant, who heard via push-to-talk before I got there that I was attending the dinner. I went through three or four such gentlemen who guided me right into a parking space. Very nice.

They were equally prepared inside. I walked in, was greeted promptly by a friendly hostess and told her who I was visiting. A quick check of the seating chart told her where to take me and I was escorted out to the sun room where David and Laurie were already waiting with Mother. The tables were set beautifully, a flautist played in the background, and young servers came around with water, cider, and egg nogg. The food was served at each table and was quite good, although you have to remember that for me anything I don't have to cook is automatically gourmet. The above photo came courtesy of the Clough Center staff who came around with a camera. I had the photo in my e-mail by the time I got home.

It's a nice idea having Thanksgiving early, although being on a week day, Rob and Stephanie weren't able to get the time off from work. But it acknowledges the dilemma of holidays at this stage of things. To spend the actual holiday at the Clough Center is hard. It's hard because of the travel on a busy travel day. It's hard because of the added emotion of family holidays. It's hard because all family traditions go by the wayside when you celebrate in an institutional setting.

Putting the holiday on another day recognizes that most of us need a more normal setting for a Thanksgiving holiday, but also need to be with the ones we love in some semblance of the occasion. Mother has no clue that today wasn't really Thanksgiving, so we got to celebrate that with her. Come Thursday, we will celebrate together as a family. Her place will be empty, which is always brutal, but in some ways it's not unlike those Christmas times when you saw part of the family on Christmas morning, others Christmas night, and still others across the next week. It would be great to have them all together at once, but they were still all a part of the holiday picture.

Mother was fairly alert today, although she made no responses other than to nod in a way that indicated she preferred pumpkin over apple pie. They've increased her Parkinson's medication, which makes me wonder again about the connection between Parkinson's and Alzheimer's. When she first began the Parkinson's meds back at The Birches, she showed mental improvement. I've only seen her twice since they increased those meds, but both time she has been a bit more alert.

So it's Thanksgivng. I can't say I'm thankful for her state. In fact, I'm pretty mad about that. But I'm thankful that I could take the time from work today to share a meal with her, even if she thought I was some stranger who dropped by for lunch. I'm thankful that the Clough Center made such provisions and took such care, realizing that most of us live torn between the guilt of wanting to celebrate holidays at home but feeling we need to be with our loved ones. Today was like a guilt-free pass to spend Thanksgiving Day in whatever way we could find to dull the pain.

Next Chapter

Well, Rob and I did visit Mother a couple of weeks ago. There isn't all that much to report from that. She was in a new room at The Birches, a shared room with another resident. But the shared rooms at The Birches are very nice. A full wall separates the beds with a common living area. All her things were moved over, although the pictures weren't put back up on the wall since another move would be imminent.

I don't recall that she spoke while we were there. Rob and I looked through the old yearbooks, which included the years of each of our graduations from the same school. So that provided some diversion as we showed Mother various pictures of us and her and others she worked with for so many years. We stayed about an hour and laid her down on the bed before we left. She was pretty tired.

In the intervening weeks things could not be worked out for Medicaid in time to get the bed available at Pine Rock Manor, where Rob and I had left a deposit on Mother's Day. A note from David tonight indicates that tomorrow she will move to The Clough Center in New London, NH. This was the place that Rob looked at right after we both looked at the place in Concord that looked to me like a prison cell.

Rob's report (and he sent me pictures) was that The Clough Center was quite nice and with it's affiliation with one of the best hospitals around, that is a plus. The negative for me is that it is a full three hours one way (without traffic) from me. But it is only half an hour from where Rob now lives. Apparently she will be with two other residents to begin with. I don't know any other details at this point. Since I didn't know this was coming and have a full day booked in the office tomorrow, I won't be able to be there for the move. Of course it is also much further from where David lives and I wonder if he will move. I don't know. He is renting now, so it is possible.

I have a lot of anxiety. I know the move has to happen and The Clough Center has a good reputation, including from some of our extended family who have some experience with it. When Rob first visited there months ago I liked what I found on the web, including several artists whose websites listed the Clough Center as a place where they performed or displayed their art. Colby-Sawyer College also has a student program there. All good.

But of course she won't understand what is happening or why. At least I think she won't. It's one of the hardest things in this disease. We have no idea what she understands--whether the problems are greater in communication than perception. I wonder if she will notice that there are no more familiar faces from day to day. But then I don't know if the faces she now sees every day are familiar or if they seem new to her each time.

I just want her to feel as happy and contented as she can. When I think about what I hope for her, my eyes well up. I can have no part in helping it be one way or another. Que sera, sera as it were.

So for those of you who might read this soon, please pray for a smooth and happy transition. And pray for the staff at the Clough Center as they provide not only for my mother's care but for all those who find themselves in such circumstances.