Mother's Day 2009

So tomorrow is Mother's Day. I have a lengthy church speaking gig, so I will not be with Mother. And because of the rift with my stepfather, I now have very mixed feelings about going on days when he is likely to be there.

It's one of those nasty times when all of life piles up. I turn 50 on Monday, remembering the day of my birth--it was in the wee hours of the morning after Mother's Day in 1959. But Mother spent a good part of the actual Mother's Day in the hospital in labor. Turning 50 isn't bad...just a reflective time during a period that is just generally difficult. Menopause...will I have a shred of energy today? This week? This month? The nightmare of getting Mother's disastrous finances in order--a task now in its fourth month--thanked by hate mail and litigation from David. Insane work schedules with the Bible Society trying to navigate the economic meltdown while celebrating our 200th anniversary. A mother who is somewhere, but probably not in the body that bears her name. I sent a lovely card. But the one who taught me to read will not be able to read it now.

A distant cousin came to my booksigning last week (yes, God with Skin On: Finding God's Love in Human Relationships has finally been released! Get yours on Amazon!) and brought with her some pictures and letters that she thought I might like to have. There were some pictures from my brother's wedding, and this one above of my mother and father being walked down the aisle. That was a year before my father died. Mother was 47 in that picture.

I don't imagine turning 50 was a cakewalk for her either. She had been a widow just two years. I was married and out of the house and she was battling the federal government to gain political asylum for my Czech pen pal and his wife who had defected from the then Communist nation and moved in with her. The economic times were also lean in 1982 and she had a 200-year-old farmhouse on 3 acres of land to care for. And menopause (I imagine). And an insanely busy work and church life.

She could have told me about turning 50, if she were capable of telling anyone about anything. But she's not. Her mother might also have shared with her, but my grandmother didn't give a flip about my mother--at least not in any way that showed. She lived in Florida and had her own life. Just like she always had from the day she ran off leaving my toddler mother with no idea why her mother didn't come home.

So perhaps I have all the answers I need about what it was like for my mother to be 50 years old and on her own with bureaucracies to battle, too many responsibilities, oceans of grief for things lost, economic woes, and a body with a mind of its own. She lived it with grace. I shall endeavor to do the same.

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.

The cold

It's a new year and a lot colder. I didn't go up to New London on Christmas. How do you not visit your mother on Christmas? I don't know. But I didn't. Neither did I go anywhere else. I stayed home and played World of Warcraft with a friend in Atlanta.

I guess it's that the drive is so long and with my brother elsewhere, he would not be able to meet me there and lessen the coldness of visiting with someone who is both present and absent at the same time. I guess I simply couldn't face Christmas in real life, so I went to a virtual world and opened virtual presents under a virtual tree from Greatfather Winter with the thousands of others who couldn't face Christmas in real life either.

But I had two weeks off from work, and if I didn't get up there in two weeks off, I wouldn't ever let myself off the hook. So I planned to go on New Year's Day when the traffic around Boston would be lighter. And it snowed. So I didn't go.

But I did go the day after New Year's and Rob and Stephanie met me there. I called ahead and the gracious staff at the Clough Center adjusted her nap schedule so she could be up and at least quasi-alert when I arrived at 1 pm. I arrived about half an hour before Rob and Steph and saw that Mother had new braces on her hands and forearms.

We had noticed in prior visits that her left hand seemed to always be curled up in a ball...although it looked more like a claw than a ball. When we asked about the braces, it was indeed that problem that they were trying to forestall. Her jaw moved around like an independent contractor. I mentioned that to the nurse who said it rarely does that. But it does that every time I visit for the entire visit. Ditto for other visitors. We concluded that the excitement of the visit triggers the response.

As we sat there just the two of us I said to her, "I wish I knew if you could understand what I say. I have no idea if you understand the words but can't communicate a response or if everything I say just sounds like jibberish to you." Maybe it was just my imagination, but she clearly looked like she was trying to say something in response. If so, she could not successfully form any words. Maybe her jaw moving is her body trying to remember how to speak.

Rob and Stephanie came and we chatted for well over an hour. Mother watched quite intently. Perhaps she knows. But her mind can't be entirely clear. If she could understand everything and just not communicate, that wouldn't explain her confused actions back before she lost her ability to communicate. When she couldn't follow the directions on signs or when she called me to settle an argument she was having with David about what day of the week it was.

I hadn't wanted to go. But...as usual...I didn't want to leave either. I wish we had health care that enabled us to care for our loved ones--or at least to live with them while someone else provides the care we cannot. It would take some of the chill out of Christmas.

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.

The Distance

Yes, I know it's been a long time. As I missed two book deadlines (the manuscript is finally done and submitted--thank you, God), and work was insanely busy, the stress of feeling I should be making the long trek north to see Mother combined with the work disasters looming should I take that time pretty much shut me down. Combine that with the memory that the last time I was there she slept through the entire visit, and I ended up deciding to get the work done at home.

Not that she has been absent from my mind. I posted earlier about my sadness that she couldn't understand what was happening on the political scene as Barack Obama gained his party's nomination. That was magnified a million fold on election day. When I went to vote that morning, I circled the bubble for Obama/Biden three times. One for me, one for my late father, and one for Mother. In the evening, I took their picture off the wall in my study and propped it up in front of the television so we could all watch the returns together. They would have been so happy and proud. Strange, I know, but these are strange times.

And then Sunday I went up for a visit to the Clough Center. I arranged to meet Rob there, and he called ahead to make sure they had her up. Now why didn't I think of that? Meeting Rob for visits is easier now that he lives only about half an hour from her new home, and his presence and conversation means that we stay longer than either of us might otherwise. Sunday we stayed about two hours.

She was having a pretty good day and was fairly alert. I asked her if she had heard that we elected a new president. She perked right up and said, "Yes." Since it was a Sunday, I also asked if they had church services there. Again she answered, "Yes." Actually, one was going on in the other room as we visited. Those were the only words she spoke during our time, but they were relevant to the conversation, which is notable. Maybe she just got lucky, but her expression seemed to indicate some clarity about the answer.

The whole time we were there, her jaw moved around like a restless school child. Parkinsons. A nurse came over to us and I asked about that, since David indicated that they had recently increased the dosage of her Parkinson's medications. The nurse was very attentive and made some notes in her file for the doctor to review. She also promised to help with a problem that has been going on for years--her glasses sliding down her nose. It seems like the solution to that should be simple, and I've been fussing about it since long before she left The Birches. But there they were again, never able to stay where they should for more than a minute--their trek down her nose accelerated by her ever-moving jaw.

As Rob and I got up to go, I leaned over and gave her a kiss, and in that moment I saw her there. In behind the eyes where the soul lives and occasionally gets the chance to peer out through the fog. It was a sad soul on Sunday that obviously didn't want us to go. But I had many hours to drive home. And a job that beckoned. It took most of that trip home to get over it.

Sleep well...

I visited Mother last Sunday afternoon before heading to an event with Rob and Stephanie. "Visit" of course is a relative term with her, and Sunday it was even more so.

Arriving about 2 pm, I found her, along with her now three roommates, asleep in her room. Nap time after lunch, I suppose. I went over to her bed in the corner by the window but had to move her wheelchair to get to her. When I moved it, the most awful alarm went off, blaring for almost two full minutes until a nurse could get down to shut it off. Mother did not even open an eye. She was out.

There were no chairs, so I sat on the bed. No response. I gave her a kiss, shook her a bit, and called to her. Nothing. She was clearly sleeping...I don't want to imply she had slipped away...but she was down for the count. So I just sat there with her for about half an hour.

There was a time when her Parkinson's took over her jaw and her brow furrowed. I could not ease it. So I just stroked her hair and prayed with her until it was time to go. She would not know I came, except perhaps in some mystical or subliminal way. But then who knows if she knows I have come when she's awake.

Here's a picture, by the way, of the visit the week before, taken in the dining room of the new place.


It all makes me wonder what being alive means. I've especially thought about that tonight, as I type in the wee hours of the morning after Barack Obama's acceptance speech at the Democratic Convention, too keyed up to go to sleep. She can't wake. I can't sleep.

I want her to be alive tonight of all nights, but not just alive. I want her to be awake. I want her to know about the history that was made tonight, because I know she would cry as I did both for the distance we have come as a nation and for those who had to suffer and die to bring us here.

I remember a couple of years ago reading old letters from my father to my great Aunt Anne. It was 1955 and my parents had been married just one year. It would be four years before I came along and my parents were living in California as my father served time in the Army. They didn't have money for a whole year's rent, so they just had a place in the winter and spent the summers camping, taking the opportunity to travel a bit.

On one of those trips to northern California, they joined with another couple and decided to splurge and stay at a motel. Try as they might, however, they could not find a motel with a vacancy. It was about two-thirds of the way through the letter that my father inserted a parenthetical explanation that the reason all the motels were filled was that there was no room for colored people. The couple with whom my parents were vacationing were black. I found that remarkable for 1955 and it helped me understand why my parents took up the cause of civil rights in the sixties.

I've written about this before...maybe even here...but it stays in my head. All I knew was that Billy Wiley was my friend. I didn't understand why the boys in second grade would try to beat him up. I didn't understand why my parents had to go to town meetings and fight to get Billy's family permission to live up the street or why there had to be meetings at our church about them coming to worship with us. I didn't understand why my father wanted to take pictures of Billy and I together--slides that he showed at a school assembly at the high school where he was a Vice Principal. Why did high school students I didn't know want to see pictures of Billy and me?

Billy was just my friend. We once sat together in the corner of the mud room of my house to eat dog biscuits because the dog would so obviously do anything to get one of them that we figured they must be pretty good. They weren't, and we laughed as we spit out the dog's gourmet treats. When I fell for my first boyfriend, Billy carried secret messages between us. I didn't know then what I know now about the world that Billy and his family inhabited as a black family in an all- white town in the sixties, even in New England.

But my mother knew. And my father knew. Maybe because they had once joined their friends in a tent because there was no room for them at the inn.

All of that came back tonight, and as I cried at the walls that came down and the promise of a new day, I cried even more that Mother, who would have given her eye teeth to see this day, was asleep. She can't know. My father, from his place beyond the veil, knows. But Mother sleeps, perchance to dream.

The Clough Center

With a week-long preaching gig in New Hampshire, I was only a little over an hour away from Mother's new home at the Clough Center in New London, NH. So, on the day I had off, I headed north with a friend from the Dover church.

I had written ahead to find the best time to go and was told late morning, so we planned to arrive about 11 am. I new the center was very close to New London Hospital. Turns out it is actually attached to the hospital, which I take as a good thing. I think ambulance rides are probably pretty traumatic when you don't really understand what's going on.

We came into a lovely lobby area with a cheery dining room off to the side. The place where the rooms are is definitely nursing home, rather than the sense of residence there was at The Birches, but it was clean and nice with no smell. We were told that Mother was in room 105.

That wasn't very far from the nurse's station...a room with four beds and two windows with a nice view. Mother however was not in any of the beds. So we came back out to look for her and saw that they had her up walking...using a walker with a belt tied around her to help catch her if there was a problem. It was good that they had her moving.

She had already been up and down the hall, so they sat her in her wheelchair so we could have a visit. The wheelchair is new--she didn't have that at The Birches, but it makes much more sense with her mobility as limited as it now is.

We greeted her and she had a bright smile for each of us. There was some activity going on in the sun room, making that unavailable and the TV room was a bit crowded. But it was a nice, sunny day so I wheeled her outside where there were a couple of benches. One of the nurses brought us each a bottle of water, one with a straw for Mother. As we sat down, Rob arrived.

So the three/four of us visited for about 45 minutes. Mother drank water when I gave it to her every so often. It turned a bit cooler so we went inside and headed for the dining room. Each table was set for four people with nametags at each one. Apparently there is an aide at each table to help residents.

We had just gotten settled in the dining room when David and Laurie came in, so we had quite a crew. We visited a few minutes more, took some pictures (which I'll have to post later when I'm home and have the cable for my camera) and then said goodbye. I'm headed up to visit Rob and Stephanie next weekend so as I kissed her goodbye I said, "I'll see you next week." "Okay," she said cheerily. An appropriate response and something she would normally have said. So maybe it was lucid--or maybe it was luck. But it was nice in either case.

So...no great moments of revelation or insight, just a good feeling about her new home and a sense that however difficult it may have been to move, she seems to have weathered the storm. Of course she always was adaptable. Where Mother lived was never as important as who lived with her and, today at least, we were all gathered together in the same place. Sort of like the Upper Room, only without all that rushing wind and tongues of flame.

But I do think the Spirit was present, just as the still, small voice. The voice that simply says, "Okay."