Print Story Wheels, cream puffs and other delicious things
Diary
By littlestar (Mon Apr 23, 2012 at 08:49:43 AM EST) death, roller derby, hospice (all tags)
 So what's been happening eh? Did you here that story about that guy? Yeah.... me neither.


 So hi. How's it going or whatever? Long time no write and all that jazz. Things have been pretty crazy over here in schoolhouse land. At least, I have felt like things were a bit crazy. It does often feel a bit crazy around here, so that must just be normal, but it does now seem even a bit more crazy than usual, so that may actually be, a bit crazy. Yeah, I know. It's a mouthful.

On Dying
So my dad is dying of Lou Gherigs disease, also known as ALS. I don't even remember what those letters stand for in the "real" name but no one who doesn't have it (or hasn't had a family member have it) even knows the acronym so I mostly just think it's called Lou Gherigs. Anyhoo, that's been a big bite of life experience. 

My mother has been put upon the most with my dad's illness, as she lives with him and was doing most of the care taking. But really, since he started falling and gouging holes into his head last summer, stuff has been different for me as well as I help my parents a lot with stuff they need. Obviously now stuff is really different. He lost mobility in his legs months ago and at this point only has decent movement in his left arm (still finds it hard to say use a fork to pick up food from a plate) and minor movement in his right. He can still talk but it's getting much harder to understand and it fatigues him with the effort. He has to wear a diaper (as I know you all heard about it one of CBB's diaries) and be changed. Just this week he has moved to a Hospice. This has been a HUGE relief for my mom and for me too. 

The hospice is a beautiful facility made to order for palliative care. We are SO super lucky that he fits their criterion and that he got in when he did. I was initially worried he would find a reason to hate it, and though I still worry about that, it seems it may be ok. He got to take a bath in their awesome cool gurney bathtub thingy that lowers people in and then pulls them out so they can be transferred back to the bed. My dad LOVED being in the tub again. In fact, I think that's what won him over on the place. So, that's where he is now, and will be until he dies. It was strange when the ambulance (not emergency just transfer) came to take him there, when they were putting him in I was thinking, that's that then, his goodbyes to his home. It made me sad for him, he has put so much work into the house and it means so much to him. More reminders, as if I needed them, that things are just things and they come and go.

So there are whole host of things that go on when your parent is dying the most complicated is that you have to deal with all the viscera (care and where it comes from etc.) and then there is the parent who is dying and how they are doing, and then the parent who is not dying who is dealing with the death. So, lots of fun stuff. I luckily (for me I guess) have a very good view of death, that is, it doesn't frighten me to talk about it or imagine going through it (and of course you do when watching someone you care for go through it). I don't need to pretend we are not dying or that someone who is dying isn't dying. So, those things have been helpful.

On Being Me
I'm a pretty strong person and don't mind being so. Now and again I don't want to have to be strong and I think it is really hard for the people around me to know when that is. I understand that. I probably don't make it very clear (I'm not fond of not being strong, I just recognize sometimes I don't have it in me). So, you know, that's a thing. Mostly it doesn't matter (see the first sentence) but, now and again the world overwhelms me. It is unfortunate that when I'm most likely to be overwhelmed is also when most people around me are too overwhelmed to be able to recognize I need support and are in fact looking to me to be strong. I have come to terms with this, but sometimes I still don't like it. Inside I am saying, I wanted to be the one having the meltdown and screaming now, I'm the one who needs to have a crying fit. Instead I go into the bathroom and cry quietly for three minutes and then come out and pretend everything is fine. Being frustrated makes me cry sometimes. It's a funny reaction I think, I guess it must be because I let it build up.

Starting Stuff
I started a Junior Roller Derby League. It's neat. We had our second class today. So far I'm sort of doing all the lesson plans and organizing but there are a couple of other mom's who help out when we are in the class, so that's good. I had sort of been hoping for more help and hopefully as the league moves forward there will be more so that it can run as an organization on it's own not just a thing run by me. I plan on leaving in a year or two so I guess we will see where it goes.

I started running again. I'm better at it now. This is really cool and makes me really happy. I am so much more capable physically and I love it a million. Unfortunately finding time to run or workout is still something I find hard to get at the right times. But, that is all part of being a parent and I did sign up for that so I guess I just have to deal.

Sport
So I made the A team in my roller derby league. This is very cool but a bit daunting as well. We are babied in a way that makes us (the newest members) very aware of your newbie-ness. It doesn't make me bitter or anything I just feel sort of bad for not being better. Hahahaha... I said that at our last advanced practice (which was also my FIRST advanced practice as I just passed that advanced testing) that I would try and be better I felt bad that they were going into an A game with half a team of newbies. It's the way it goes as some veteran girls are out with injuries or life issues and they needed to fill out the team so we were the only choices and it's not like we suck but we don't have the experience that's for sure. Anyway, it is what it is, I'm only on one line at the moment anyway (and there are six!) so it's not like I'll be on the track that much. Although, I do wonder if those lines will be modified game day as I think that some of those veteran skaters are going to be getting really tired being in four lines (that's not a lot of down time sometimes less then a minute between jams). In any case, I am SUPER excited to be playing even if it is only in one line, it will be my first real game!

The end
Well for now. I have to go deal with school and children and my mother and the house and the Habitat Show and editing that book (shit have to move that forward!). Or, perhaps I will just sit here staring vacantly out the window. I really enjoy doing that, I'll make a great old person.
< Pascha was low key this year | A cunning plan succeeds >
Wheels, cream puffs and other delicious things | 16 comments (16 topical, 0 hidden) | Trackback
))))hugs(((( by ammoniacal (4.00 / 1) #1 Mon Apr 23, 2012 at 09:07:06 AM EST

"To this day that was the most bullshit caesar salad I have every experienced..." - triggerfinger

On being strong by yankeehack (4.00 / 1) #2 Mon Apr 23, 2012 at 09:31:36 AM EST
Yes, that, I understand that feeling completely.

The only consolation that I have is maybe it's because I'm doing something right in life that people depend on me so much.

But there are days that I can't wait to be of the age that I can just walk away from it and be...irresponsible, throwing a fit, having people do things for me.
"...she dares to indulge in the secret sport. You can't be a MILF with the F, at least in part because the M is predicated upon it."-CBB

In Chicago by garlic (4.00 / 1) #3 Mon Apr 23, 2012 at 01:50:39 PM EST
we have local derby bouts, where the women make up 4 different teams as well as our 2 travel teams, made up of the best (and most able to travel) from the local teams. We had a final regular season bout on Saturday. Last regular season bout, I saw that one of our teams only had 12 ladies in skates -- way too few if you want to keep people fresh. This past bout some of the women who only play on the travel teams were drafted to come be part of the over-injured team so that they could actually be competitive.


Cool by littlestar (2.00 / 0) #7 Tue Apr 24, 2012 at 09:05:50 AM EST
I'm glad you are enjoying the derby! You obviously are watching a much larger league then mine, more like the one in Toronto which has four teams. One of the lucky things about being in a smaller league is that you get the opportunity often faster to be a part of a better team if you have the skill but not the experience. Obviously we just have less people to choose from, though there are still many other who could have played so I still feel special. :)
*twinkle*twinkle*


[ Parent ]
I totally understand the joy of being in a small by garlic (4.00 / 1) #11 Tue Apr 24, 2012 at 09:36:38 AM EST
team.

I went to a small highschool, so any sort of thing that I had an interest in, and a small amount of talent got me access. I would have probably never made it into the show choir of a bigger school, but I got to do it for 4 years at my little school, and it was great fun.


[ Parent ]
I'm sorry. by clock (4.00 / 1) #4 Mon Apr 23, 2012 at 07:47:31 PM EST
That just sucks. And you know that. We're here for you and thinking of you.


I agree with clock entirely --Kellnerin

Thanks by littlestar (2.00 / 0) #8 Tue Apr 24, 2012 at 09:09:47 AM EST
I wish you didn't live so far away so I could talk to you more.

I appreciate your thoughts, I know you guys have a lot going on yourselves. 
*twinkle*twinkle*


[ Parent ]
Well, woman, by technician (4.00 / 2) #5 Tue Apr 24, 2012 at 12:36:15 AM EST
you're another of those people who I've learned to look up to, you and your husband both.

I'll have to get up there at some point, we'll tell stories. There's a lot of stories.

Right back 'atcha mister by littlestar (4.00 / 2) #9 Tue Apr 24, 2012 at 09:12:02 AM EST
 I would love to sit and chat, and hear stories. I love stories, I bet you have some good ones too. I have crazy ones. Hahahaha... it would be a good mix.
*twinkle*twinkle*


[ Parent ]
My dad by Phil the Canuck (4.00 / 1) #6 Tue Apr 24, 2012 at 08:44:18 AM EST
There are some similarities between what happened to my dad and what's happening to yours.  My dad's decline from was much faster (10-12 months or so), and caused by something much different, but I got to witness all of the various stages of decline.  It's as emotionally draining as anything I've ever been through, and I've circled my share of emotional drains.

I went through it all alone, because I was alone.  My family lived in different cities.  When I visited Dad I was almost always alone.  People wanted to leave us father-son time.  I would hate to think of someone having to go through a similar series of events alone, especially when they don't have to.  The point being, please don't isolate yourself from your support system out of some sense of duty.  Even the strong ones need support every now and then.


Very similar indeed by littlestar (2.00 / 0) #10 Tue Apr 24, 2012 at 09:36:02 AM EST
My dad's decline has been the same I think. It has been ten months since he started plummeting down. Ten months ago he was walking around outside working, now he is an invalid in a hospice. He was given six months in December. To get into the hospice he is in you are meant to have three months to live, that is the normal length of stay there. Although, the lady did say if they don't die by three months they don't kick you out, they've had people stay up to five months.

Dealing with a dying parent would be very trying to go through alone. I'm sorry you had to do that, you certainly have had your share of emotional drains. It is lucky that you are strong. I certainly don't isolate myself from a sense of duty. I do have a very big sense of duty but it doesn't include isolation, just the taking care of what needs to be taken care of. I have a very supportive husband, but life doesn't always make it the best time for stressful events, there could already be really stressful stuff going on, in your support people's lives. This seems to often be the case actually. So, I do withhold a lot but because I know that my support is already WAY overloaded and can't really handle any more (though he does offer/try). And I don't blame him, the poor guy has no time to breathe. But I certainly don't feel isolated, I take what I can get and try not to ask too much. I also have a mother who loves to gush and whinge and feel sorry, but I'm really not into it, at all. Makes me feel icky. But, then again, if I really needed something she is always, always there. I'm sure sometimes I could lean on people more but it's just not my way, but I do take strength from the people around me who love me, that's for sure, I need them.
*twinkle*twinkle*


[ Parent ]
My fear by wiredog (2.00 / 0) #12 Wed Apr 25, 2012 at 11:44:45 AM EST
Is going through it at long distance. Dad is in Utah, I'm in Virginia. He's single, I'm an only child.

Earth First!
(We can strip mine the rest later.)

[ Parent ]
Oh by littlestar (2.00 / 0) #15 Thu Apr 26, 2012 at 08:54:19 AM EST
my. Yes, I can see your concern. I guess you will have to make some hard decisions then, life loves to make things interesting.  
*twinkle*twinkle*


[ Parent ]
We've talked about it. by wiredog (2.00 / 0) #16 Thu Apr 26, 2012 at 12:01:52 PM EST


Earth First!
(We can strip mine the rest later.)

[ Parent ]
Welcome, love, condolences by johnny (4.00 / 1) #13 Wed Apr 25, 2012 at 10:27:51 PM EST
My beloved brother Paul died of ALS, age 44, just about 4 years ago (late April, 2008).  I spent a lot of time caring for him and his family (his wife had acute leukemia at the time; has since made full recovery).  It sucked more than I can tell and yet being able to help them was more beautiful than I can tell.

I've recently been spending a lot of time with my parents, Mom 87, Dad 85.  Mom has Alzheimers, Dad has Parkinsons (with increasing dementia).  Taking care of fading parents is emotionally rough, but, if they're old, as mine are, and have had their good run, as mine have, then it just feels (to me, anyway) good and decent to be able to help them in the end-game. It's sad and frustrating, but it's not cruel or tragic (as was the case with my baby brother).

In any event, even though your father is older and in a hospice, I know it won't be easy, and you & your family have my best wishes, for whatever they're worth.

She has effectively checked out. She's an un-person of her own making. So it falls to me.--ad hoc (in the hole)

Thank you by littlestar (4.00 / 2) #14 Thu Apr 26, 2012 at 08:53:07 AM EST
so much. Caring for the dying can be difficult, though I also feel the specialness of being able to help. I'm sure that's what the all of the many volunteers at the hospice feel and why they keep coming in to visit with the people there. I also don't feel that it is so unjust because my father is not a young man and he has led a very full life and that makes it easier then watching a younger man go through the same thing I'm sure. Of course because my father is bipolar regular things become more complicated sometimes so that's a part of all the dealings as well, his regular old issues. But I feel things are really well now, he's in a great place where volunteers make homemade food and come in and talk with him. I worry way less about my mom now and we go and visit him and make him smile. It's not a horrible ending to an interesting life. I hope that you have some support with your parents too, dealing with dementia is not an easy thing at all, I know all about that too and it is very hard.

I appreciate your warm wishes, I'm sending some right back at you. :)

*twinkle*twinkle*


[ Parent ]
Wheels, cream puffs and other delicious things | 16 comments (16 topical, 0 hidden) | Trackback