Sunday, January 22, 2012

Never have time

So, we managed to get out on a real proper date last night.

Hospice got us some tickets to the Symphony for this weekend- a violin concerto. Part of the agreement on my part of going out (most especially for a period of at least 3 hours for this) was that Wash uses his new wheelchair for this outing. And not bitch about being in the chair. (It's been causing some issues this week, more on that later)

To top that off Saturday morning I get a call from one of my really good friends from High School who knew the Conductor to the symphony- and she has made a call or two for us so we got to meet the Conductor before the performance! It was quite the experience. We also had our seats "upgraded" to the wheelchair area of the hall; it felt like the music was coming right at my ears, so lovely.

We ended up grabbing a couple sandwiches on the way home, and got to make use of the Light Rail's wheelchair access. We were out for just about 5 hours. Honestly, I think outside of spending the day at the hospital we have not been out of the house that long in maybe a year or more! Also, best as I can recall outside of our dinner out at Applebees, this would have been our first "date" since around April 2011. It was nice. We held hands for a large portion of the night.

I have also learned that his chair needs at least one pocket if not two and a cup holder for him. I also need to give myself a breathing treatment before I take him out in it up any hills. I do feel like I got my own exercise in last night. But, I think the point of the chair worked- we were out for 5 hours without him feeling tired, without him needing a nap, or to slow down for anything, he was able to be out and participate in society- the very thing it was designed for.

We've got a bit of a busy week coming up too, so it's a lot of pressure, but I am able to really feel hopeful over this time. As scared as I am, I have people around to at least offer me emotional support right now. I have needed, and I do need that.

Now we just need to have a small fund-drive to get some spare monies so Wash can "steam" up his chair.
-He's been talking to the Chaplain and Social Worker and they told me that it would be better for Wash to have me put the chair away as much as possible until he either got used to being in it or until he could really customize it to something he feels comfortable with and like it is his "own". My brother is willing to help him physically do some of the work (like painting the chair and helping to get a nice cover for the seat etc) - we're all trying to make this process easier for Wash. It's not an admittance that it is "the end", it is just about making full use of the tools, people, and programs that will give him a happier time at the end of his life.

I've been personally trying hard to cope with this, or to challenge myself to really identify what parts bother me so I don't hold feelings of negativity towards "Hospice" in general.

I have overall been encouraged and renewed by having Hospice in for this past week. It will take time for sure before I feel more rested, but right now I feel like I have someone in my corner to take over that fight when I can't, or when I have to put Wash first. I feel like they are allowing me to really put Wash first. Yes, emotionally it does hurt, but holding onto the good that they do and bring into our lives helps that pain.

Thank you all, Dear Readers, for your own words of encouragement and sharing your Hospice stories. They do help.


  1. Dear Two of You,
    I remember when we called hospice for my dad. I had been putting it off out of fear and resentment, and because my parents wouldn't allow him to live at home because it would have meant "strangers" coming into the house. He was in a two person nursing home room, and the final straw came when his roommate yelled at us to get out because it was his bedtime--this was around 8 p.m. I gave in and my dad entered the local hospice the next day. I told him the entire time he was there exactly what the rules were: he didn't have to leave us in six months, but if this was the only way to get quality care, a private room, 24 hour visitation, etc., we were going to use what it offered. Use it for what you need; you sound so much better already. Wash doesn't have to leave this earth in six months. He can be recertified. Let them give you every ounce of joy and help they can. Hugs, Rennie

  2. That's so great! I'm glad you were able to get out of the house for so long! Yay for the new wheels!

  3. So good to read your good news. Hospice is all about living. People with hospice care live longer (and better!) than those who go it alone. I hope you are able to enjoy each other more in the days to come.

  4. Soooo, this past Saturday evening, you & Wash............ enjoyed a lovely violin concerto............ (and even MET the Symphony Conductor before the performance!!)............ grabbed a couple of sandwiches on the way home; and............ also held hands for a large portion of the night, too??!!

    Just thinking about *Y.O.U.R.* Date Night, Tashi............ makes *M.E.* feel good, (haha)!!

    Although there will undoubtedly be "some little bumps in the road" with Hospice----(i.e., I'm not sure if there are ANY types of Patient Services anywhere that are totally-and-completely 100% perfect, you know)----the *G.O.O.D* First Week (last week) that you & Wash had with Hospice is............ very, very heartening and encouraging for your & Wash's (*mutual*) Future Care And Comfort, you know!!

    Anyway, since "steampunk wheelchair" is one of the Labels you've assigned to your (Above) wonderful post, I studiously then decided to do a Google Search for that same topic, after which I (very embarrassedly!!) realized, Tashi, that............ I'm probably the only person on EARTH who hasn't viewed this "Steampunk Professor Xavier Wheelchair Project" video, (haha!!):

    (((*Hugs*))) to you and Wash both ~