The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there. It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:
Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.
She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival. There was a painful twinge.
When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.
On the positive side of the fainting spells and only partial awakening, she has no memory of the events. Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.
In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.
Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.
The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.
Morning duties included giving Mary Ann a shower, washing and drying her hair. On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.
The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.
The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .
Now that we are midstream in the trip, the question remains. Is it worth it? It is much harder to handle things away than at home. The barriers that must be dealt with are many. We could stay home and watch television. It would be so much easier. A trip like this allows us to see things we could not see and do things we couldn’t do at home. It gets us away, with new people. It provides exercise and stimulation (sometimes more than we would otherwise choose).
Would we still do it? Even knowing the realities, at the moment we would still choose to go. We won’t be home for another two days. I’ll let you know then if that is still my answer.
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The Caregiver Calling 