We're on our way home.
    Everything's set up, including transport home. I misunderstood the PT situation, though. Hospice does not fund any kind of in home PT, but they do provide training for me and an aid. We'll start out with that and if it seems as though something more concentrated might be helpful, I'll hire a PT out of our pocket to pick up whatever slack I encounter. That's what the money's for. I don't think I'll consider trying to buy a van outfitted for wheelchair transport but I'm going to research local transport options that will deliver and pick-up for a nominal fee. I'd like to get her out more, now that she's finally accepting of wheelchair travel.
    Otherwise, her necessary equipment will arrive at our house Monday morning, which will include a hemi-chair and a walker with only two wheels rather than four. I'm still opting out of a hospital bed. I'm taking bed measurements tomorrow. If her bed here at home is a bit higher than the one at the hospital, I'll take the wheels off the frame while MPNP is here. Better write down that I need to take my tape measure to the facility in the morning in order to measure the bed's height.
    So, here's the plan for tomorrow. I'll arrive at the facility at 0630, get Mom up, make sure she's changed, bathed, dressed and in her chair, leave notes for everyone involved in her care tomorrow that I'll be gone most of the day, then get back here to meet MPNP. We'll work together until sometime around noon, when either I or both of us will go check on Mom, make sure she's being changed regularly, is attending therapy, etc., then leave. We'll continue working until around 1700, when either I or both of us will check back on her day's progress. Then, we'll continue until we're done. There's lots of wiggle room in the schedule. I've told Mom several times what's going to happen tomorrow and that I'll be absent most of the day. She's taking it like a trooper, but I know she'll probably wonder where I am. That's another reason why I want to show up at least every five hours.
    We had a great day, today, even though Mom was not very strong or adept during PT, which occurred in the afternoon. Her OT in the morning, reportedly, though, was very successful, even showing some progress, such as her being able to concentrate on tasks without being distracted. I know she's capable of this but I also know that she can waiver in this ability. The PT and I went over the types of sittercizes we do and the minimal standercizes we used to do. She also showed me several more activities that Mom has enjoyed in therapy and demonstrated them with Mom.
    In the morning, before either therapy, because the weather had turned from hot to cool overnight, we decided to escape the facility and visit the Riparian Reserve at the bottom of the hill. As usual, we were the only visitors. We wandered all the paths then sat for a good 45 minutes in a central clearing and talked about the area, then and listened and observed. I tried hard to control myself, but I couldn't stop myself from weeping. Since I was sitting on the ground and Mom was surveying the tree canopy looking for birds, I was surprised when she asked me what was wrong.
    I confessed, "When we get home, it's going to be a lot different, taking care of you, than it has been. I hope I'm up to it, I want to think I'm up to it, but it's going to be harder, too, and I'm afraid that I won't do well at it. I'll try, you know I will, and I won't give up, but I'm telling you ahead of time, it might be rough going for awhile and each time we come to a new rough patch I might freak. I just want you to know that."
    Mom sat quietly for so long that I looked up and asked, "Did you hear me?"
    "I heard you," she said, continuing to survey the canopy. Finally, after a few more moments, she said, "You've done fine, so far. I have no doubt that you'll get through this just fine. Have confidence in yourself. Have confidence in me. I'll help you."
    I was so surprised and relieved that I laughed and cried simultaneously. She may not remember her clarity, today, or the words she or I spoke, but she was talking from her soul, and her soul will remember everything, I realized. She will help me, I know she will, in ways she and I have yet to imagine, because our journey has never been about me taking care of her, it's always been about us traveling together.
    Later in the day, just before lunch, as she was looking out the window at her beloved view, she said, "I believe this is the best view anywhere on the island."
    Hmmm...I thought, I wonder if we're on Hawaii, where we lived many years ago before it was a state, or on Guam. Then I thought, oh, wait a minute, we're on the island we've been on for a long time, the one I recognize when we're in the thick of it with no help and we have to depend on each other and ourselves. Cool. I can deal with that.
    Even later, while she and I were eating lunch, she said, "This has been the best day I've had in a long time."
    Hallelujah. Maybe we can pack some more of those under our belts.

    Back to specifics. I'm particularly curious about how our regular bath times are going to play out, since Mom is currently having trouble standing for any length of time, although earlier in her therapy she was doing well at this. I'm hoping that years of learned behavior will kick in and her body will remember how to stand for about five minutes, including a 180 degree turn at about two and a half minutes, but, if this doesn't work, well, we'll figure something out. We always do. We figured her "present" bath procedure out in a pinch and it's worked very well for almost five years. We should be able to get through this with our usual creativity.
    On Monday Mom will arrive home, with me in tow, at about 1330. The nurse we've been assigned through Hospice will arrive a bit later. Some time after, probably later in the week, the doctor to whom we've been assigned will also come out for an evaluation and we'll have another visit involving an evaluation of our home for safety suggestions. But, essentially, after 1330, we'll be securely on our way through this final segment of our adventure together. Who knows how long it will last or what experiences we'll have? I'm nervous, and still a little scared, but, well, Mom's not, so I'm excited, too.
    What's on our future agenda? Who knows. Stay tuned.
    Later.
- posted by Gail Rae @ 17:02   email  this post