Journal entry by Shannon Slobotski —
So the new bed didn’t work as we had hoped it would. Unfortunately the air mattress is too soft for me to move him once I set him in it. He sinks right down into it whereas in a firmer mattress he sits on top and I’m able to turn and shift him to get him settled where he needs to be.
Last night we did take the top air mat off the bed and put it in his wheelchair. It’s the part that keeps air pumping through it so that pressure points are constantly changing. We went to bed at 1:00, back up at 2:00 and then after adjustments etc back to sleep at 3:30. Then he slept until 9:00. That is the longest stretch in as long as I can remember. That said he told me he didn’t think he slept well because he didn’t feel very rested this morning and even without meds he had been mostly dozing. I told him it is either that he is overly exhausted from the stress and increased activity of the last two days or it is simply progression and he’s just going to sleep more now. The hospice nurse told me yesterday that at this stage there is really nothing we can do that is wrong. If he wants meds or feedings, give them. If he doesn’t, don’t. So finally Mike gets to be 100% in the drivers seat - after 23 years together he no longer has to take orders from me. 😜
About an hour ago he started coughing again, it wasn’t too bad but after the hour long episode he’s quick ask for the morphine and lorazepam (anxiety med) to prevent it from escalating. He can take both every 15 minutes until the stress of it passes and he can relax. He took 2 doses and is now resting soundly.
Unless anything significant happens between now and then my next update will be sometime this weekend.
Love to all! 😘😘
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