Blog Status

For years now I have used Blogger.com to make these posts. Unfortunately, Blogger no longer supports having one of their blogs hosted on a different site (e.g. mine) and will not let me make further posts until I migrate the blog back to their site. Grrr...I put up this post only by hand-coding the page on my site. I am looking for a solution.

It has been a very, very difficult year since becoming my mother's financial guardian; and the reasons I had to take that step, the family break with my stepfather, the legal challenges and the financial ruin I am trying to sort out have made posting difficult. The things that consume my mind and my heart often cannot be written in this kind of forum.

Mother is still with us...although that remains a relative term. She does not know me when I go, and has not for some time. Sometimes she has not even responded to my visit at all. It's a catch 22, since I am depressed when I go and feel guilty when I don't. She will be 78 years old on May 26. I have not been there in months. Do I take 7 hours out of my day to go and see her sleep for a bit? It is such a bitter pill.

I am grateful for Rob and Stephanie who only live a half an hour from the Clough Center and are taking care of her day to day needs as I take care of her legal affairs from afar.

I am trying to find the right blogging solution to be able to continue this blog and some of my others. I do not want to migrate the blog back to Blogger and yet in its current form it takes hand-coding on the site to update, which means although I have gotten comments from you in my e-mail, they do not show on the site.

Hopefully I will get this sorted out soon. In the meantime, if you want to connect, feel free to e-mail me at anne@annerobertson.com. It is a tough road, and much better when it is shared.

Support the Alzheimer's Foundation of America

With the dog's passing last Friday, I did get up to "visit" Mother on Saturday. I put visit in quotes because she was sleeping in a recliner in the TV room, her eyes held tightly shut, and I could not wake her. The Clough Center called yesterday to say they thought she had a UTI and were treating her with antibiotics, so perhaps that was part of it. The visit was perhaps not the best way to lift my spirits after losing Ruckus, but so it goes.

I also wanted to pass along some information I got in my e-mail. It's a fund-raising campaign by a biotech company that produces Alzheimer's drugs. I have tried to steer clear of pharma ads in this blog, but I think what they are doing with the fundraising campaign for the AFA (through Nov. 17) is worthwhile, and it costs nothing. Kind of like the Hunger Site, you just go to a site and click. Here's part of their press release.

Accera, Inc., a biotechnology company delivering breakthrough therapies in central nervous system diseases, announced today the launch of its “Lost & Found” campaign, an on-line initiative whereby each visit to www.lostandfoundcampaign.com prompts a $1 donation by Accera to support the Alzheimer’s Foundation of America (AFA).

Every AD patient, caregiver or family who visits the “Lost & Found” Web site may participate in this fundraising campaign by simply selecting an icon that represents something they have lost or forgotten that day. Clicking on an icon will trigger a donation from Accera to AFA at no cost to the individual participants. All funds generated throughout this initiative will be donated to AFA on November 17, 2009, “National Memory Screening Day,” to further AFA’s efforts to support individuals with Alzheimer’s disease and their families. The Web site also contains information on current treatment therapies and educational links for patients and caregivers.

National Memory Screening Day, an annual initiative sponsored by AFA, provides free, confidential memory screenings to individuals concerned about memory loss with the objective of early detection and intervention. Qualified healthcare professionals offer the face-to-face screenings at convenient locations in communities across the nation.

“We are pleased to be the recipients of Accera’s ‘Lost & Found’ campaign as we work to raise awareness about National Memory Screening Day,” said Eric J. Hall, AFA’s president and chief executive officer. “With the incidence of Alzheimer’s disease escalating, AFA is extremely appreciative of those who understand the vital need for support services and the difference they can make for individuals with dementia and their families.”

Steve Orndorff, Ph.D., President and CEO of Accera, Inc., stated, “Our goal through this effort is to signal to patients and caregivers that there are many people and companies, like Accera, dedicated to combating this devastating disease.” He continued, “With the downturn of the economy, we wanted to enable individuals to make a contribution towards this effort without having to donate their own income. Through our initiative we hope to improve the quality of life for patients and caregivers.”

“Lost & Found” submissions will be accepted on-line through November 13, 2009.

Thinking Backwards

I haven't been to see Mother in ages. The dog is dying and I can't leave him more than three hours at a time and a visit takes 7-8. Work has been over the top with our bicentennial celebrations and it's my busy time of the year with my preaching schedule.

And yet in some ways I don't feel like I've been absent. Because I have had to assume guardianship, months and months of time have been consumed working on her behalf. All that made me wonder if that's how she and my father felt in our growing up years.

My parents both worked in the public schools and were active in both school extra-curricular activities and church leadership. They weren't home much and much of the care for Rob and I was left to my father's mother. And yet they were working constantly on our behalf--to keep us financially afloat in hard times, to provide examples of giving to others and community involvement for us to follow.

My aunt and uncle are moving and thus clearing out stuff. They came across piles of pictures that my grandfather had and just sent me a packet of pictures they thought Rob and I might like. Many I had never seen before, including this one of my mother.

It isn't dated, but I would say she looks to be maybe 10 or 11 years old, which would date it sometime in the early 1940's. It has tabs on the back that indicate my grandfather had it posted up for quite some time. Because he rarely saw his daughter. He had a long commute and long hours and when my grandmother ran off with another man he was a single dad. So my grandfather turned to his grandmother to raise my mother. He remarried when she was about this age, but she still continued to live with her great-grandmother, who lived to see her married.

We all get through life the best we can. It is comedy and tragedy, sometimes leaning more heavily one way than the other. We do what we must and then see what's left over. I have to trust that something in the bond between mother and child allows her to know that I am with her constantly, even though my body is not physically present with her body. I have a feeling she's not often present with her body these days either. Perhaps she is here with me instead.

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.