Although it seems that a lifetime of experiences has occurred since June 7th, including breaking my shoulder in a bike accident on July 1st, I woke up this morning eager to write about getting the chance to do something again, this time with a better outcome- at least that's how it seems in this moment.
Tricking my mother (who has dementia) and bringing her up here to Philadelphia where all of her 5 children are, so that we could take care of her, never felt completely comfortable, though it did feel like a necessity back in May. In many ways Martha, my mother, flourished among us. After putting her on high potency vitamins and making sure she got, at least, four squares a day, not to mention fantastic fresh ground coffee every morning, she perked up, exhibiting her tendency to be the life of the party, if not always the center of attention. But as important as the nutrition was, it appeared that being around her family and all the memories it stirred up, not to mention the eager listeners, was equally important, if not more so.
However, the fact that we had tricked her, though she could not keep the fact of it in her short term memory, (I now recognize) contributed to her daily wishes to go home to Florida. It was a powerful paradox. She was clearly happier and more engaged than she'd been in years and we were collectively ready to take responsibility for her care (we had forgiven all that we could and made room in our hearts and homes for her) and yet she also clearly let us know that she wanted to got back to the life she'd known for the last 17 years in Florida. It didn't help that her partner, Al, began calling her almost daily, reminding her of his existence, and urging her to come home. In the 7 years that I have known Al, he has never raised his voice, rarely even disagreed with anything anyone says (he just quietly refuses to answer questions that may bring up strong differences of opinion). But when he talked to us on the phone he was furious, accusing us of tricking Martha and insisting that we let her return.
We all felt it, the uncomfortableness of having tricked her and the lost opportunity to see if she could be brought to reason. Knowing that she could not live anywhere, least of all back in Florida, without live-in, or daily help, we met and discussed the options. My family had agreed to be the home that Grandma Martha needs, but we also felt that we could not take her until the fall when our middle daughter returned to college. Cornelia, my youngest sister, agreed to return to Florida with our mother (and her two small boys), to see if Mom would come around to our point of view and come, more or less willingly, up to Philadelphia sometime in late August.
Upon arrival they found that Al, who is 91, had been rushed to the hospital a few days before for heart trouble, and then found that he had pneumonia. Once he was well enough to leave the hospital, his children deemed it necessary for him to live with one of them. Trish volunteered, just a few miles away form Mom's little trailer on one of the lovely little bayous the characterize much of coastal Florida. Mom visited Al once in the hospital and once at Trish's, but could not bear to be around him in his condition. She knew she could not take care of him and though she could not bring herself to even think it, she also couldn't stomach the realization that he could no longer take care of her.
Many people counseled us against letting her return to Florida, and my oldest sister was also not so sure it was a good idea. But we felt strongly that we had to give it a try. Our main tactic was to try to get Mom to acknowledge reality and admit that she needed help. We were even reluctantly willing for her to stay in Florida another few months if we could arrange for in-home care. It seemed as if luck was with us when Cornelia ran into someone in the trailer park who knew Mom and now did home care for a living. Cornelia arranged for her to come and meet with Mom and to pay for a few mornings a week to see how it might work out. Martha would have nothing of it. She also stubbornly refused to see reality. The more we tried to force it the more she resisted, insisting that Cornelia should go home and that she could take care of herself.
For Cornelia and her boys, Mateo (3) and Lukas (6), there were good days and bad days, but things seemed tolerable as long as there was hope that Mom would come around. In one final, last ditch effort in this (misguided) direction, I wrote Mom a letter. In it I stated plainly and clearly what the situation was and challenged her to acknowledge this reality which I knew she knew was true. The thinking was both that I had more authority than my youngest sister in my mothers book and that if she had something in writing that she could refer to, maybe it would stick. No go.
Cornelia was wearing out and Mom was being as stubborn as ever. We had a family conference call, attempting to figure out what next to do. We realized that the only way to get Mom back up to Philadelphia was to trick her again. Sister Sara had agreed to fake getting married, brother-in-law John volunteered to fake dying.. but these did not seem like good options. I had, what seemed at the time, a brilliant idea. Recently a long time family friend had visited from St.Croix. Her mother had been Mom's best friend for many years and she used to visit every year. Nan was no longer able to travel because of health problems, so my friend, Sasha, had invited me to come down and visit them which I hadn't done in years. So... I proposed that I talk Mom into going to St.Croix to visit Nan with me and and then instead of flying back to Florida we would fly home to Philadelphia. We all thought this had the best chance of working, so I called Sasha and she agreed to put us up for a few days, as long as it was before August 11, which was only 2 weeks away at the time.
At first I was excited about the prospect of taking Mom to St.Croix and then bringing her home, and hopeful that it would do the trick with little or no fuss from Martha. However the more I thought about it the more uncomfortable with lying I became. Then I began to realize that the trip to St.Croix would probably not be much fun and would be a huge waste of money to boot. I still felt obligated to go down to Florida and bring my mother back up with me, but I began praying for a more legitimate reason to do so. I bought the tickets, round trip for me and one way for Mom. In the meantime I attended a Quaker religious conference and then drove up to join my family on vacation at Shelter Island. While I was at the conference I was told about the 200th Anniversary picnic of the Quaker Meeting my family used to belong to and where my father is buried in late August. I filed it away, thinking that some of my siblings might want to go.
While on vacation I was lamenting that I had not come up with a good, legitimate reason for Mom to come up here that might actually appeal to her. I had also casually mentioned the picnic at Byberry Friends Meeting. My middle daughter, Megan, pointed out that Grandma might come up for that. I was amazed. Why hadn't I realized it? I was as sure as I could be that if I penned a special invitation for her she would come, since she had been asking to go visit Daddy's grave recently!
I flew down on a Friday with the return flight scheduled for Sunday afternoon. Fortunately, my sister Sara had given me a book to read to help me be able to communicate with Mom called The Validation Breakthrough by Naomi Feil. I read the whole book on the plane ride down and found it very helpful. The hypothesis is that trying to get folks with dementia (or Alzhiemer's) to see reality is useless and very often counter productive. Validating their "thinking" or perceptions of reality, especially by reflecting back to them, in a positive light, the emotions and conflicts behind the memory or reality distortions, restores a sense of self worth and eventually allows them to accept some realities and be more flexible. In fact, most people with dementia do sub-consciously know the score, but it is too awful or sad or depressing to acknowledge it (especially if one has used denial as the primary way of dealing with conflict or adversity).
I was alarmed and dismayed to find out that Al had recently called Mom on the phone. Along conversation had ensued, Al telling Mom he was coming back to living next door to her and that things would return to the way they had been. Al's children had invited us all out to dinner on Saturday evening, as a way of saying goodbye without actually doing so. I decided I would not show Mom the invitation or talk about her coming up for the picnic until after that, given the circumstances. Saturday morning we received a call from his family saying he had been rushed to the hospital again. Mom and I went to visit him in the late morning. He looked thinner and not happy to be back in the hospital, a walker sitting by his bed. Mom was up-beat and affectionate, kissing him hello and chatting about this and that. but I could tell she was uncomfortable and did not want to stay long. We left after about 10 minutes and she gave him a long loving goodbye kiss (which brought tears to my eye's).
Afterwards she repeatedly said that he was never coming back to his house, that she couldn't take care of him and that his children needed to from now on. Phew! that was a relief! AS she repeated the story she changed it slightly so that he now used a wheelchair and that he had started to lose it mentally. Every time she told me about I would reply that she and Al had had 7 good years together, but that now he needed to be with his family (leaving off the rest of that thinking- that she also needed to be taken care of by hers). We went out to lunch, brought the leftovers home and then I gave her the invitation.
Her first quick response was negative. But with very little on my part she quickly reconsidered, saying to herself that she needed to stop turning down these opportunities since who knew how much time she had left. The next hurdle was to get her to agree to come with me the next day. Again after an initial negative reaction, she said, why not? The only part I had to fudge was the date of the picnic; in the invitation it said only August 2008, and later the phrase next weekend. I didn't feel too bad about that since her sense of time is so fluid and from one moment to the next she doesn't remember what month or day it is.
Much to my amazement she asked, rhetorically, how long she should stay, then answered herself, saying maybe a few weeks or maybe until Thanksgiving. later on she asked me what month it was, thinking she was going to spend the summer up north. But before dinner she asked me what she should do about the house, shut it up? turn off the AC? She emphatically said she did not want to sell it, but maybe rent it? I couldn't believe my ears. During dinner she asked when we were leaving and when I said tomorrow, she was shocked and said we couldn't leave then, there was too much to do to get the house ready! Then, when I went to answer my cell phone, she went next door to Cathy's and asked her to watch over the house while she was gone. Cathy came back over with Mom and I heard her ask Mom how long she'd be gone. Martha responded that she wasn't sure when she'd be back. Cathy, knowing more of the situation than Mom knew (at least consciously) told us both that we could leave any not finished tasks for her, such as cleaning out the refridge! Mom really does have sweet neighbors.
The next morning, of course, Mom did not remember- but once I reminded her she was right on board (thank goodness!). We were a little late returning the rented car, since our flight was at 2 PM- there was no time to refill the gas tank. But it is almost as if Mom has never looked back. After being here only 24 hours, she told her granddaughter, Megan, that she was a Philadelphian now. She has been staying at Cornelia's for the past 4 days and has only mentioned going "home" once to my knowledge. Only time will tell, but I think we got it right this time. Although she has not admitted that she cannot take care of herself any longer, she seems to know that she is here to stay, surrounded by her children and grand children. She may never "admit" it, but that is completely irrelevant.
I am grateful for the second chance, and greatly relieved that the ordeal is over and that all went so smoothly! I am both amazed and humbled by the whole thing. So many little pieces had to fall into place and they did. Some were serendipitous, some planned, many people played a part. Thanks to all. And guess what- the real adventure is only just beginning...
