It is ironic that, as my wife gets worse, as her disease progresses, my life becomes less time-stressed. This ‘new normal’ appeared three weeks ago over a few days in a series of events. (This post is more procedural than most because, as Jackie’s disease worsens, the dance of care gets a bit more complex.)
Jackie gets her primary care from a nurse practitioner (NP) who visits her at our home. During a routine visit, when when Jackie was showing what seemed to be the normal slight decline in abilities, the practitioner turned to me and said that she was going to forward papers for Jackie to go into in-home hospice.
Admittedly I was shocked and disheartened but I trust our NP and her decisions unreservedly. It strikes even me as odd to think how many times, during the course of this disease that I think of ourselves as lucky. Lucky because Jackie has been treated kindly by the disease; she has the logopenic variant, perhaps the gentlest kind of PPA, lucky because we have found great health care support from our visiting nurse practitioner who is smart and experienced and kind, because we found a care giver who takes care of Jackie and me all day and lastly because I am able to keep her close and take care of her.
Whatever faint signs the nurse practitioner saw in Jackie, they were prescient. Even as the papers were being forwarded, Jackie suffered another UTI with the concomitant loss in understanding and, frighteningly, strength and balance. She could no longer walk or get out of bed or even feed herself.
In a few short days, my office and the downstairs spare bedroom were rearranged, a hospital bed was delivered and hospice visits started. I had anticipated some degree of resistance from Jackie to moving downstairs into the new room and the new bed but her awareness of her environment had shrunk. In short morning , we got her downstairs and accomplished the transition.
At the same time, whatever resistance she had to being changed and washed disappeared and she allowed our daily caregiver and the hospice aid to care for her. Now that she needs assistance with everything, the increase in care effort was substantial but the future was better defined so I could happily purchase more help and be comfortable I wouldn’t run out of money for her care.
With help every day, the physical burden on me is less. I have some free time for myself and yet the time I spend with Jackie is less pressured. During the day she is fed and bathed and taken out of bed by her care giver. If I am home, I step in her bedroom and look at her every thirty minutes or so to assure myself that she is still here. She seems to eat the best at about 4 o’clock and then drops off to sleep for a while. I take over at 5 and sit with her until about 7 or 7:30. It is impossible to guess what she will be willing to eat so I get together small amounts of four different foods and feed them to her in rotation. She has been eating resisting anything that requires much chewing; she looks at the spoon and just refuses to open her mouth for something she doesn’t want.
I search for something on television that will engage her eyes, nothing with obvious violence and I have started to record Sesame Street for her to watch. I sit next to the bed and work on my laptop until 9:30 or 10. Then I change and wash her, tuck her into bed, adjust the bed and pillow bolsters to keep her upright. The last few minutes are identical, I kiss her, tell her that I love her and that I am going to bed. She usually just watches me leave and thn her eyes go back to the televison.
Where before, her condition seemed to go along on a plateau with some infection or inflammation causing a sudden drop to a new low, now her condition seems to be slowly continuously degrading. There are good days and bad days, but each successive clump bad days seems slightly worse than the last one.
It seems so long since Jackie has been in the hospital bed but it is really less than a month. There are no very obvious specific signs that she is failing but she is less aware, recognizes me less often and, most significant to me, she has stopped looking at the pictures in magazines.
She enjoys cartoons but often drifts off and when she is out of bed a couple of times a day. she is content to sit quietly looking at her reflection in the mirror or folding and straightening anything within reach.
When someone she knew from the past comes into the room and calls to her, she brightens for a moment and then the light fades from her eyes and she goes back to looking in the mirror.
In Latin the phrase is ‘alea iacta est’, in French, it is ‘Les jeux sont faits’. In either case, the meaning is the same, the end of the game is determined and I just need to hold on and do my part and the future will happen as it will.