For want of a nail…
I’m feeling like I lost a fight today. it’s a fight that’s been going on for more than two years. a person I know not an acquaintance not a friend certainly but a person I know has been trying to reset their life when it became obvious that the family member who had been their caregiver for going on 60 years was no longer able to care for them due to their own advancing age and various other health issues. I gave advocacy numbers and other organizations found them advocacy numbers I gave them ideas as to where to seek help legally financially and regarding their disability. Some of those ideas worked some didn’t. There was a lot of balking and false starts. There were outside influences that I could do nothing about and that he could do nothing about. even with that though the fact of the matter is that someone close to him a relative a family member or friend should have helped him start thinking about this years and years ago. And primarily because he’s not the easiest person to get along with… And because it’s such a complicated daunting process. he is not going to get home care in the home he is going into a facility tonight.
I am no longer remotely close to him, and yet I feel that I have lost a fight.
In the simplest terms I have been trying to keep another disabled person from having to go into a facility, & I failed at that. It’s not just me who failed any and all advocates that could really do a lot more who he contacted that were in his city, in his county, in his state also failed him with many more resources and much more time and ability at their disposal. So the system failed him too.
Last thing I’m going to say I just feel is important I don’t know if any other person with disabilities who ends up reading this is actually in the state of mind or in this stage of their disability or will ever be so, because they have had the good sense to do a little more planning than this gentleman did.
If a family member is your primary caregiver now make a specific plan as to when and how you will begin to transition to professional home health care if needed. Investigate it as if you needed it right now to figure out what agencies, people or facilities you might need. If at all possible do not let a sudden shift in circumstances leaves you vulnerable or dictate a choice between two bad choices. because that’s where he is right now. I never want to see or hear of another disabled person having to go through what he’s going through right now. I know I will hear the stories and probably be one myself at some point I just hope there are fewer of them.
In with the new
So, I’m in a new place. new neighborhood, new accessibility features. As in most regular apartments I’ve met some folks who come and say hi right away and I’ve seen some folks then clearly are of the I’m just minding my own business school. that makes me happy. It’s a good mix. I have a wonderful locust tree right outside my window. I will take a pic later. I’m not sure if its a black locust or just a locust. I am on the second floor, which I like. the last place was wonderful but one of the downsides was windows right on the parking lot in both buildings. It was very easy both to see what other people were doing, and to have your own movements tracked. Here, there really is no way to see too much of the inside of anyone else’s home. Privacy.
This place is smaller in some areas and bigger in others. it does not have central air like the last place did. however, its unit air conditioner is very good for the living room. the fact that there is no central air tower in the corner of the living room gave me enough additional space that I can maneuver my manual chair in front of the recliner. The importance of this cannot be understated, because it allowed me to do what I have not been able to do for quite some time, transfer into my recliner and watch television in comfort. There are many dogs around the place, although I’ve only met one so far. The grounds are great looking, full of trees and the building is set back from the road. So there is some privacy in a global sense as well.
There’s always discussion about having a building full of disabled people vs having a few slots out in the community in each new apartment complex built. I understand the benefit of that. it gives more options to people. I think that should be the goal in future. but having lived in one of these places for over 4 years now, I like the building just for us model. I think it can provide a sense of community, a sense of common experience. I’m fond of that idea. I have a soft spot for it, even when in day-to-day reality it might not be a community experience for some folks. I’ll be happy with this and stick with it as long as I can. Although I’m having some issues with my current home healthcare agency, that I prefer not to go into, I will say that the aide they have provided is wonderful and we get along very well.
The bedroom is about 85% the size of the old bedroom. I have no problem with my furniture but it’s causing some storage issues.
The thing I’m most amazed about, in a good way, even though it causes me some inconvenience, is the roll in shower. The shower portion seems about half the size of the shower portion in my other house. I have to push my wheelchair uphill to get to that part of the bathroom. Uphill? if I get weaker will I need to tie rope to one of the grab bars and just start pulling with my arms? I’m really not complaining seriously I just think it’s kind of hilarious. I’m amazed that they got all the things they needed, including the need to be able to turn my large wheelchair in a 360 degree range into such a small space. the shower itself is quite functional and does the job. I miss the one large room effect of the bathroom in the old place. My breakfast island is also smaller, to make sure that the wide door of the bathroom across the way could be made as wide is it needed to be. I have one-fifth less cabinet space in the kitchen, which both limits my picture storage space on top of the cabinets and the room in the space itself.
It’s like going back in time a little bit. this building being built in 1989, just before the ADA was passed, but using the specs that would become the ADA, feels like a rough draft of the ideas that were put into place when the building I just left was built in 1998. And those buildings were all on one floor. This is a mid rise and so there were probably different things that had to be thought of here, versus building a building all on one floor.
There is no pharmacy close by, so I’m going to try to get my prescriptions changed to mail order to make that easier. I have a Save a Lot grocery store next door, even closer in a way then the Giant Eagle was in my old place.
There is a good chain restaurant within rolling distance of the house which means if I want to meet friends from out of town and I don’t want to sit in my house all afternoon and just chat, I can simply invite them to meet me at that restaurant.
Put my forms in for having the vans for transportation come and get me for various things and I’m happy about that. All in all I think I will like the new place at least as much as I like the old and perhaps a bit more when everything balances out. I’m very much looking forward to summer in Cleveland followed by football season in Cleveland. I’m also looking forward to any and all visitors that might stop by.
Not BADD
I haven’t written one of these for Blogging against Disabilism Day in a couple of years and I’m falling down on the job. I apologize to Goldfish for not notifying her in advance that I had an idea to talk about.
I’ve just moved from an area with little transportation (other than some medical and limited specific places ) to an area with full fledged paratransit. I am applying for the service now.
I looked down this morning and saw a paratransit van pulling up to the apartment. I saw my neighbor roll out as fast as he could and onto a ramp. I don’t know where he was going. and I’m glad I don’t know because there’s so many varied answers to that. He could be going to a medical appointment and using paratransit instead of a medical ambulette . he could be going to a job part time, full time. That is the second most popular use for paratransit in this county after medical appointments. He could be going to do social things. Dinner. A movie…meeting friends. Having choice. The idea of leaving. The idea of going where I want to go when I’d like to go there. the idea of choosing between a couple of different social options. I’m going to be really glad the first time I get rolled out that door for something other than a medical appointment. Not BADD at all.
Midlife And Treachery 
