New Chapter: 1

Went to have dinner with Don on Sunday night, and he was scarey bad. Could barely open his eyes or hold up his head. I checked and no extra drugs were causing this.

A few toileting accidents the last two days apparently,  but worse than that, mumbling, trying to drink his fingers, slumping dangerously and unable to keep his eyes open but there was my poor sweet – couldn’t talk or hold up his head but kissing the aide’s hand to thank her. Vital signs were checked and uti was ruled out yesterday by the staff, and the only option tonight was to get him into bed before he fell down. Making silly jokes when he was able to hold up his head momrntarily as two aides walked him, hunched over almost falling and oh so frail, to his room. Terrifying.

Terrifying fast decline. However the nurse said maybe he was just tired because he was up most of last night – oh stay away guilt – looking for me. (No. I will not spend my nights in the care home because he momentarily remembers me -NO)

I left, scared and relieved that people who knew what they were doing were taking care of him.

About 3 hours later I phoned,  and the nurse said he was snoring peacefully – what better evening can any of us elders hope for? And how wonderful to be able to phone and get that instant reassurance.

On reflection, I am not sure that skilled staff knows what to do with this decline – or else they are not telling me, because they sure know more about what is going on than I,  even as they continue to ask questions about what is normal for my dear heart.

New chapter indeed. There is a care conference scheduled for Feb 1, to check that he is getting best care.

Oh yes– as for me I had a lovely weekend being cared for myself by water women, Celtic fans and other loving friends. Learning slowly to take care of myself … not easy but absolutely mind-blowingly luxurious when it works.

This morning I awoke rational, clear headed  and even making lists! Sounds like a silly way to.measure well-being but I haven’t been able to think clearly enough to make a planning list for at least 6 months.

Then I remembered this sense of awakening well-being had occurred at the end of each week-long Respite (mmm maybe not the first one) during the winter but each time I had been re-immersed into the nightmare. And each month Don was worse and so was I.

A partnership in lockstep decline.

I am so sad about this dreadful story. I wish the millions more who will face this, many with far less support, public or personal, than I, can be spared this torment or at least have an easier passage. Death is the end for all life but dementia torments all who come in contact with it.

It may be too soon, but I also rejoice that the system pulled me out before I too went down in those dangerous currents.

And the next day, the nurse reported a restless night later on, and the afternoon he spent happily with his friend Debbie, our caregiver. She cares for me too. What a breath-takingly hard job.


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