I still remember sparks flying off my fingertips when I shook her hand, meeting her for the first time for a job interview. She could take my mind to places it had never been and never will again. She was my lover, my partner, my best friend, and I wanted more than anything just to be able to grow old with her. For the last twelve years or so, though, she has been following that slow slide towards death from Alzheimer's. She is still here, but I miss her so much. After almost half of our marriage spent dealing with early onset Alzheimer's, I carry a deep sadness inside that probably will always be there.
A special welcome to anyone who is new to The Grieving Room. We meet every Monday evening. Whether your loss is recent or many years ago, whether you have lost a person or a pet, or even if the person you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time) you can come to this diary and process your grieving in whatever way works for you. Share whatever you need to share. We can't solve each other's problems, but we can be a sounding board and a place of connection.
With an Alzheimer's diagnosis, you know the outcome. You don't know how long, but you do know that little by little all of the parts of her will go away, never to return. Anticipatory grief visits me now as she is in the last stages of the disease. Another kind of grief will come when she passes away. But grief and mourning have been with me for a very long time.
She was an RN who worked for a few years in long term care and I had been the administrator of an Alzheimer's facility for a time, so we both knew the disease pretty well. I remember the first time she repeated a sentence word for word five minutes after saying it the first time, and then doing it again five minutes later. I felt a stabbing pain then, hoping I was wrong in what I suspected. We had been at the very best time of our lives, four years away from the states on our little sailboat, wandering around the world. We had spent a year and a half in Mexico and had then sailed across the Pacific to Galapagos, French Polynesia, the Cook Islands, and then to Samoa where we had stopped to work. We were living our dreams.
She started having trouble at work, in the operating room at the hospital in American Samoa. She stopped reading and complained that there was nothing interesting in the newspaper (admittedly, it was only The Samoa News). We left Samoa in early 2001 and by the time we got to Australia that November I had to drag her to the doctor where the awful diagnosis came out. She dealt with it with denial and would get extremely angry if the "A" word was spoken. But she did know and was adamant that we continue around the world. I wanted to quit, to send the boat home on a freighter, but she wouldn't hear of that. She said that cruising was her life and she didn't want it to stop. We continued.
Lists covered all the paper on the boat: the Presidents, the states, the capitals, and many single words she tried to hold on to. There was the day I found her crying on the dock, staring at the water hose, saying, "I don't know what that is!" My grieving and mourning got started. The was so much anger and fear at that stage. She lost her profound depth as a person and began to make awkward statements. She asked everyone how much money they made.
After awhile, you start to predict what will go away next, but you are never right. Every week there is something and nothing ever comes back. Small parts and big parts fly away. There are really never any real victories, only losses. The wrong words crept into sentences. She started to obsessively play solitaire on her computer, all day long. I usually cooked when at sea anyway, so it was easy to take that over when we reached the point that every meal in port became pork chops and mashed potatoes. They were still good pork chops and good mashed potatoes, but after a few weeks it really was time for something else. If you don't laugh sometimes. . . .
Within a year, she no longer knew what was happening to her. Sentences got shorter and the words became fewer. But, she loved the game parks in Africa, maybe even as much as the cheap costume jewelry that now fascinated her. It sparkled. By the time we reached the Panama Canal, though, much of the sparkle was gone. My memory of the canal is of pleading with her to share her supply of Coke with the crew we had onboard to handle the lines. We had cases and cases of the stuff onboard in preparation for the 4500 mile passage to Hawaii, but she was afraid that she'd run out. It was funny, even at that time. It was sad, too.
There was that last great sparkle a few months later on that long passage to Hilo. By that time, about the only task she could handle was a few hours on watch at night, waking me up if she saw any ship's lights. One evening just before sunset, about halfway through the passage and about a thousand miles from any land, I heard a loud boom on deck and looked up to see our forestay broken at the top of the mast. It's pretty important as it's one of the main wires in the rigging that holds the mast up and masts are good things to have on sailboats. I stabilized the mast with some extra lines before nightfall and sailed with just a small patch of sail up during the night. The next morning I knew that to fix it, I'd have to go up to the top of the mast at least three times and that she would need to haul me up there with the electric anchor winch. It used to be an easy task for her, but we had stopped doing it several months earlier as it no longer felt safe (it's a long way down). Before every passage I made the trip up the mast to check all the rigging. I had begun using mountain climbing ascenders so that I could climb without assistance and they worked well, but not in the rough conditions at sea. That morning I spent several hours with her trying to make sure she could handle it—there really were no good options. By the middle of the afternoon, the forestay was repaired, we were back under full sail, and she had been able to haul me aloft four different times for the repair job. I'm still amazed that she did it.
We've been back at our homeport for almost seven years now. Language went away as did dressing and toileting. For a time we'd only go to restaurants that had pictures of the food on the menu, and then we just didn't go out to eat at all. There was a long time when she thought that everyone on the docks wanted to steal her jewelry when she left the boat. Solitaire on the computer survived until just a few years ago. Now we deal with weight loss and eating difficulties. She is in a wheelchair. Hospice has been a great support for nearly eight months. Soon Alzheimer's will win it's last victory with her. It will be one final loss for me to be grieved and mourned.
She is unaware of what is happening and still laughs and is happy. While she no longer knows who I am, she still knows that I am. She always smiles when I wake her in the morning. I know that she feels safe and secure here on her little boat. I want her to have a good death and I'm now ok with whenever that is. There is so little of her left now, but I know I've created a fantasy in which much more of the Pam I fell in love with is still here with me. That fantasy will go away with her passing and I will move into a new form of grief and mourning for her. She has been robbed of all of her memories, but I will still have mine.