Almost done! The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels. They will be installed tomorrow.
The plants are now all in place. Brad even brought some from his own yard to put in an area above the lined portion, his gift to us. His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings. Brad has put forth extra effort at every turn. The end result is more than Mary Ann and I could have hoped for.
The Mallards are now in duck heaven – our back yard. They were hanging out there last evening and came today five minutes after Brad and his crew left.
I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through. While it was raining I sat on the portion of the deck that is covered with a section of the roof. The wind cooled the air so that the experience was wonderful.
Mary Ann and I spent some time this morning on the deck before the day heated up. I got her out to a lawn chair to sit for a while. Then she got up and walked to the rail to get a better look at the waterfall. As she started to faint, I tried to pull a chair over behind her. It didn’t work. I let her down to the deck. As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house. During the morning, before, and then out on the deck she had had some small fainting spells. The one at the rail was a substantial one, one that turns into a sort of siezure. As usual, there was some intestinal activity that followed. Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon.
Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep. As expected, the hallucinations have been a little more active the past few days.
The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day. Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside. Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom. For the most part she did as I asked during those times.
Other than that, Mary Ann popped up every few minutes. When I answered the phone or made a phone call, she was up. When I went into the kitchen to put things in the dishwasher she popped up. When I tried to get food ready for her she popped up. When I went to the bathroom she popped up. It seemed that pretty much every time I sat down she popped up.
As I have shared many times, falling is a major issue. The fact that this was also a fainting day made it even more challenging. Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s. People don’t die of Parkinson’s itself. Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago. Since then she has fallen very seldom, at least by the pre-stitch-tearing measure.
I realized today the reason the falls have diminished so much. I am moving very quickly to be right there whenever she stands up to walk. I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance. The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up.
The challenge is that I can’t keep her in view every moment. The monitor has to be plugged in and within view for me to use it. I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom. At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls.
Today, I must have jumped and run thirty or forty times. That is only a guess; it may have been a thousand times! While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it. Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a way to describe the feelings of being a full time Caregiver. That was the sensation today. She popped up and my arms and legs moved.
I needed some time on the deck this evening. The residual heat from the day made it much less bearable than last evening. That respite and this post are my way of settling down and allowing the frustration to dissipate. I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult. In her mind it has nothing to do with me. It is my problem that I come running when she gets up. I suppose, if that is what she is thinking, she is right. Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult. If she hurts herself, it hurts both of us. And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me.
Today is done. There have been many good moments along with the frustrating ones. I celebrate the new retreat center behind our house. I suspect that there will be need for some Deck Therapy tomorrow. Then there will be lights!
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The Caregiver Calling 