The physical therapist rules

Today seems to have been a fairly good day, although when I first called I thought we might have a crisis on our hands. But that was just bad timing. Seems the physical therapist and the lady who came to help Dad bathe both came at the same time. Not sure what the bath lady contributed but I am once again reminded of why I like physical therapists – practical grounded people who worry about outcomes but not so much about the means of achieving them. For instance, Dad's guy made my mom feel that this is possible and that there are solutions. He came up with several this morning:

1. Bed rail (not hospital bed). Hospice was going to deliver a hospital bed for Dad tomorrow. There is no room for it in the bedroom without taking out their bed, which would have forced Mom to sleep downstairs. More to the point, Mom and Dad do NOT want to sleep in separate beds. Mom has been terribly upset that they would not be together. So when the PT guy says, "why are you getting a hospital bed, don't you want to sleep together?" he helped my mother immensely. He made me feel better because now I know they have someone who gets "it."
   
2. Fix wheel chair – Mom has been having a terrible time with the wheel chair. Dad's leg keeps falling off the foot rest (toward the center). PT guy took one look at it and told Mom they needed a different chair because this one has a tilt to that foot rest. He is ordering it for her.
   
3. Extended bench for shower. Dad would rather not have his privacy invaded by others. Mom has not been able to get him in the tub by herself but it turns out there is a bath bench which extends out of the tub (sounds like it slides). He got them one so Mom can help Dad into the tub.
   
4. Gait belt – finally, someone showed Mom how to use the Gait belt and how to fit it.
   
5. Raised platform for Dad's chair. One of the things the PT guy is unhappy about is Dad's chairs. They all either rock and swivel or roll and swivel. On top of that, Dad's favorite chair (also the best fit for him) is shorter than ideal. So he is having a carpenter in town make a platform for the chair. Turns out this guy works for hospice at $50 a platform and they are steady enough not to add to the danger.
   
6. And finally, Physical Therapy to help Dad help Mom help him. At last, someone who sees Dad as having the potential to help himself. If Dad can keep some of the muscle tone in his arms and legs, he can help Mom help him move. He probably also would have fewer crashes into the tub if those muscles were worked regularly. So that will be starting. I am so pleased by this because I know how much it will help Dad to 1) be treated as a person and 2) to be able to feel like he can help himself.
   

On other fronts, I found out the hospice does not have in-home continual care (yet). But Mom/we are working on solving the problems that causes. Mom is going to try to hire a home health aide for a couple of hours every day. In the mean time, their friend Mary came this morning while Dad in bath. Had her husband Mitch come on over as well which was a good thing because Dad fell into tub again. Tub was padded in the section he has been landing in but Dad landed in the other end, of course. He's not hurt (maybe a benefit of not being able to react?) but fixing this is a top priority. A bath chair so he can sit while he shaves, etc. is the new plan. Mean while, it turns out we are going to have a family conference while Jeff and I are both home. Have no idea about what.

Not all Hospices are created equal

Today I called the Hospice program in Great Falls and spoke to Lisa, our social worker. I explained my concerns and that I wanted to know if there was a way we could get Mom help with getting Dad in and out of bed. Turns out that the hospice program in Great Falls, unlike any of the other ones I know about, does not have a 24 hour care program. They are in the process of putting one together and we would be the perfect candidates but it is not functional yet. Argh!

On the other hand, Lisa thinks my parents are "delightful" and was able to talk to Dad about what he wanted for his final days. Not that Dad was totally cooperative – he told Lisa that his dad lived long after the doctors thought he would and that he expected to do the same. He also told her he had no spiritual beliefs – not exactly true as I understand his beliefs. He is strongly atheistic – he believes we are only a collection of atoms and electrical charges: no soul, no afterlife.

Dad’s Health Update

Since so many people have asked me for updates on my father, I decided to just write update for everyone who wanted to know what was going on. I emailed many of them, but am putting a copy here because it as good a journal of this part of the journey as I will get. The top of this is the current plan, such as it is, and the latter part is what happened yesterday.

Plans

I am honoring Mom's wishes that I save as much of my available time until later; when she thinks that she will need me more. That means that I am flying home on Saturday with a return booked on Tuesday. I have promised her that if she changes her mind about needing me now, that I will stay. It leaves me in limbo but Mom needs care taking too. She needs to feel she has some control over what happens around her. She also needs to feel that we believe she is doing a good job and that we trust her judgment. Besides, I do respect my Mom and she is the best judge of what she needs to cope. I also have a ticket to Great Falls on the 21^st of Feb with a return on the 26^th.

Last night

Today was a really bad day for her. It started early (3AM). Dad somehow got out of bed on his own twice during the night, though most times he cannot move much voluntarily. When she got him up this morning she discovered Dad is now incontinent. She got him braced up against the bathroom counter to wash his face and then went to take care of the bed. While she was running their bedding downstairs to the washing machine, he fell over backward into the bath tub and got himself wedged in there. Near as I can tell, he fell even though he was using the counter to maintain his balance. That is not the only possibility, his back is very itchy and when he tries to scratch it, he often unbalances (though never before when braced against something).

She could not get him out of the tub herself (though she did get him straightened out and a pillow under his head. She had to call the fire department for help. Dad was a little scraped up but otherwise uninjured. The firemen were incredibly helpful; they got Dad out of the tub, cleaned him up, dressed him, and showed Mom how to safely help him into a wheel chair. Thankfully, hospice had delivered a wheel chair the day before so as of today Dad is in a wheelchair except for using the toilet.

Jeff (my brother) is not going to be there tomorrow as planned. They have blizzard conditions with 40 mph winds. Mom is really disappointed - she was counting on him for help lifting Dad. I think she also just needs a little more help with the daily chores. She has some help - their friends have an informal calling circle and show up to take care of household problems. Two of her friends are taking turns keeping Dad company and Mitch came over last night to help her put Dad to bed. Mary, Mitch's wife, fixed the toilet problem Dad created while Mitch helped Mom.

Today, Thursday, will be a day with more help. Hospice is sending a home health aide to give Dad a bath and a physical therapist to help Mom figure out how to keep Dad safe while transferring him