Saturday, 10 June 2017

Another Bed

I have another one of those difficult financial decisions to make. I need a new bed, not just a new mattress but a new type of bed, an adjustable bed, one that will life me up into a sitting position. I am not yet in need of a full hospital bed, not by a long shot. However I do need something that will assist in my sitting up when there is nobody here to help me.

There are two choices. One is to take a hospital bed from the ALS Society. This choice is the cheapest; the will provide one for free until I die. However it means losing my current double bed and going down to a hospital single, including the loss of my headboard and footboard. It means not being able to turn over in bed from side to side; there's not enough room. It means my bedroom will look increasingly like a hospital room, increasingly sterile and lacking in my personal things, the things which comfort me when I am alone.

The second choice is to go out and by an adjustable bed, queen size, which will work with my existing headboard and footboard. The downside is that it will cost about $2,500, which is the last of my remaining travel budget. It will mean no more travel, no "fun" stuff. It will also mean cutting down on my winemaking kits and Scotch. However it will leave me with "my" bed intact, my bedroom looking at least a little less like a hospital.

One of my friends, when posed with this dilemma, basically said to take the hospital bed because it was free. I don't think people understand that saving money has little value to me these days. I know that I will run out of money again, eventually. I know that I will be begging again, eventually. It is only a question of time. That $2,500 will give me four or five more months. I will also give me the possibility of a cruise, or another trip to the coast. It leaves me with money to give my kids, so they can come to Calgary this summer.

So compare the choices. Another trip, maybe even a cruise. Going to the coast to see my Mom and kids one more time. Giving my kids money so they can come and see me. Or having my own bed in my own space where I sleep every night. And begging for more money in what is becoming an increasingly shorter future for me.

It begs the question. Will I need a hospital bed eventually? I hope not. Most PALS have a hospital bed so that it is easier to sit up, or adjust for fluid retention in the lungs, or lift feet to help with edema. Both types of beds will do this. My progression is such that I will likely exit when my arms fail completely, in perhaps six months to a year. But you never know with ALS. There are no certainties, just as with all mankind. Except the certainty of eventual death, in my case likely sooner than yours. Still, I cannot say for sure what will happen, or how long it will be.

So, spend the money on a decent adjustable bed? Spend the money on travel and make by bedroom into a hospital room? Beg sooner? It's a tough decision. I already know what I am hoping for. The rest of you likely don't want to hear it.


  1. Hospital bed does not have to equal hospital room. Sell the current bed, and invest the proceeds in some quality bedding and luxury bamboo sheets, add some really nice artwork, a cozy chair for friends who are visiting (you'll have extra space), maybe even a large tropical plant ( hibiscus or bougainvillea) to remind you of your travels.

  2. What about a compromise, if you can find someone to make something like this:

  3. That's a hard decision, we're not the ones in your position that has to struggle daily in the bed that you have now. Quality of what time you have left is important. Maybe sell extra furniture you have that you know you will not use again, might get you a dollar or two...

  4. What a difficult choice. I say do whatever makes you happy! It might help you to read back over the tough financial times in your journal. Just as it might help to read about your trips. The trips happen and are done. You have memories that may or may not sustain you. But the money is gone... After my failed back surgery, we bought a hospital bed because it was cheaper than renting one. It brought me so much comfort. It made a huge difference in my struggles and independence around napping, just resting and bedtime. The downside? I lost the privacy of a bedroom and had to sleep in the dining room. The comfort it provides is immeasurable. A friend loaned me an additional mattress, because the one I bought was not comfortable.

    One possibility is to rent a hospital bed, put it in the spare bedroom to try it out for a month. If it is a good solution, buy the bed you want. Or accept the ALS sponsored bed... but do what makes you happy. Review your blog... it may provide the answer! gg