Grandma had a stroke

Okay, so it is quarter of 11pm and I am totally pissed. My beloved grandmother had a stroke that seems to be affecting the nerves that control her eyes. Effectively, it is blinding her.

My mom took her to the ER by car instead of calling an ambulance because it did not seem to be life threatening and was faster. The ER staff left her in the waiting room for over an hour!!! They missed the bloody window of opportunity to intervene because they did not see her right away. Not important enough to triage ahead if someone delivers you by car instead of ambulance? For once I understand the desire to sue some one for damages. Personally, I cannot quit swearing, and I generally don't. I would have a strong drink but I decided an antidepressant was not the ideal addition.

What makes it worse is that I am on a business trip back in Omaha. I have been living there for 5 months. It happens one of the few times I am away. Mom has no one there to hold her hand or give her a hug. Grandma doesn't understand what is happening or why she cannot see.

She already wanted to die. When every vertebrae in your back is broken because of osteoporosis, you hurt all the time. She cannot hear much even with her hearing aids. She did not want to live in a nursing home or be dependent on anyone. Dieing would be a relief.

Instead she has a stroke that may leave her blind. Her major recreation is reading, playing cards, crocheting, correspoding with friends, and watching Jeopardy. ALL of those require sight. Living independently is hard if you cannot see. If she cannot see, it would have been kinder if she died. I so don't want her to have to live out her nightmares.

slowly getting back into the scheme of things

Dad died 28Feb08. So hard to deal with. I guess I thought I would always have my dad. Not that I don't have a dad, just that I can no longer call him up and chat.

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

Sometimes It Just Doesn’t Get Better

As those of you who follow this blog know, the last year has not exactly been a great one for me. It doesn't look like this year is going to be any better -- in fact I think it's going to be worse. Dad's cancer is growing again. It's obviously sending little spiderwebs out into new sections of his brain. The oncologist confirms that it's a growing, although I have no idea how fast or how far, etc., because nobody tells me this. I don't think they tell me because I don't think they register it. Dad not only doesn't remember things, I don't think he's registering things or processing things the way he used to. Sometimes he's really good, seems like his old self, and then other days he has hard time holding a conversation because he gets lost. He forgets what you just said to him so you can have the whole conversation over again.

The growth of cancer also means that dad is having problems in new areas. The scariest may be that he is now having balance problems. He's fallen at least twice, although he doesn't remember falling. The hardest time for him is the transition between sitting down and standing up. I don't think I'd ever really registered just how much balance was involved in that.

Anyhow, it's gotten really tough for me. I'm having a terrible time focusing on anything. And I spend a lot of time crying this week. I'm hopeful that will resolve itself as I get adjusted to the fact that it's now definite Dad is dying. God, what a horrid thing to say! But it's true, my dad is dying a slow, debilitating death.

And if that wasn't enough, I found that yesterday my best friends are moving to Seattle. This is going to be really good for them, but I will miss them terribly. Since they're a big part of my support system, I don't know how I will function without them. I've started crying again -- don't know if it will ever stop

New Chapter - Dad gets Cancer

My Dad has cancer. There I have said it. But it really is a very inaccurate statement. Yes, my dad has just been diagnosed with anaplastic astrocytoma, but that really does not convey the full impact. You see, he was diagnosed with the disease, but in many ways the whole family got diagnosed with cancer.

My dad is the stable post around which my family revolves. Okay, so we have one of those picture book ideal patriarchal families. Two happily married parents, 2 children ( a boy and a girl); all, for the most part, happy and loving. Add one living grandparent, a spouse, and 2 grandkids, plus assorted pets, and you have my basic family.

The thing is, we always talk about cancer as if only the individual is affected. The reality is that all of us are affected. We worry about him but we also worry about what it will be like when he dies. Suddenly we just cannot ignore the fact that he has a vastly shortened life expectancy.

It is hard to live in the present. It is hard to remember that he is neither helpless or an invalid. It is hard not to be able to do something, anything, to change the realities or the uncertainties.