Wednesday, June 26, 2013

"Letter to patients with chronic disease" MUST READ!

I read this after it was posted on one of the MSA facebook pages I subscribe to and I thought it was worthy enough to pass along to all of you.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

I found a lot of good insight that might help me deal with any and all new professionals that I come into contact as Bob's disease progresses and perhaps it ill help those contacts be more successful.

Susan

Wednesday, June 12, 2013

Not your ordinary Hospital Bed

As things progress in this disease I endeavor to be proactive and prepare for things ahead of time. Bob's walking is getting more and more unreliable and we have added the option -"Do you want to walk or ride" as to how he gets from bed to chair these days.

So I have started making room for a wheelchair. Last summer after his gall bladder surgery and the resulting problems with middle of the night aspiration we obtained a hospital bed. Not wanting to move into another room - and we only have a one bedroom apartment- I placed a twin bed next to it. Unfortunately there was very little if any room left to maneuver.

My solution? I found out that there could be room to put a trundle bed under the hospital bed. So I worked out a floor plan. I had to consider several things. first of all is the position that he tends to sleep in, he would want to be facing me so he could see me (and for spooning potential). Then there is the placement of the TV and if he could see it. The problem here is that he has very limited movement so we have to work with in his parameters, and then there is the space available along each wall and how all the other furniture fits.

The last piece of the puzzle is how we want our bedroom to feel. We don't want it to be a "Sick room" or "Hospital room" we want OUR bedroom, our sanctuary, our lazy day hangout place. Bob wants to keep as much of the bedroom furniture, that we purchased 32 years ago, as possible.

So here is my solution,
 We placed our original headboard up against the wall and then pushed the Hospital bed sideways up against it - kind of looks like a day bed
 Still have our hutch (with knicknacks and photos) next to the bed is the "Bob station" and we have plenty of space for any kind of wheelchair to come into the room
 The trundle bed revealed. The hospital bed has up to 15 inches of clearance. Trundle bed frames are 4" to 6" and mattresses can be 4" to 8"
 Trundle bed pulled out
 And popped up into place
 Sleeping together side by side for 34 years. The trundle bed can also be moved out of the way to allow access if I need it during the night. If he gets to moving around too much with the tremors I can protect him with the bedrails and I can get some sleep without being shaken all night.
 The Bob station is placed at the head of the bed and has all the things I need for the morning and evening routines - keeps me from running around collecting everything and a surface to work on
 Lotions, potions, powder and towels, paper, tissue and wipes. Timers, gloves, lots of love, Gregorian chants at night. Blood pressure cuff, stehescope, Scissors, toothbrushes and cups everything we need for the night.
 Bulky items are under the table - Now you see them
Now you don't
 
We now have a bedroom that is now wheelchair friendly, has all the amenities I need for his care and our comfort, is still our sanctuary and I actually gained some storage spots I didn't have before.

One more thing :

Marlin our 19yr old cat was quite distressed that his "Spot" had disappeared. For those of you who follow "The Big Bang Theroy" show, he was very Sheldon Cooper about it. After a week I think he has finally found his "Spot" and now the arrangement is officially Marlin approved and we can all heave a sigh of relief.