72 Hours

Bo is in the kitchen – alone – and I can’t leave him there without watching him every minute; I can see him from here.  I’ve been doing “full time duty”  since I got home from Florida on Sunday night — that’s 72 hours of caregiving (plus tonight and tomorrow morning.  That will be 84. )  Then Jon and I will return to sharing;  I wanted him to get a break.

Last night Bo was up 7 times, so I was up 7 times with him.  Today, he got up about an hour after I got up, and has been going strong since then.  He has been active — gone through the plants, all of our Christmas cards (which he can’t read),  the Sunday NY Times (which he can’t read),  spilled food at each meal,  made a soapy mess at the kitchen sink,  wrapped the TV controls up in newspaper and threw them away; tore his napkin into small pieces and mixed them into his orange juice; moved furniture, and asked questions I couldn’t understand.  Just couldn’t settle.

I just got him to lie down on the sofa and quickly sat back at my computer, but he was up immediately.  I never know if he might  get up right away looking for something else.  In truth, he wants to go, to go somewhere.  Home?  I tell him we’re going nowhere; we live here; and anyway, it’s snowing and I don’t plan to drive.  He says, “Oh, OK” and five minutes later tries again.

Jon pointed out to me today that he sees a decrease in Bo’s perception  He tries to pick up the flowers in the carpet,  wants to eat the flowers on the plate.  He can’t connect ideas.  You may say that something is in his pocket and he’ll point to the book case:  “Here?”  Then the table:  “Here?”   What we can’t figure out is if he doesn’t understand the names of things,  the whole idea or just part of the sentence.  He needs to go to the bathroom but can’t tell me today, just holds himself.  Tomorrow he may be better.

The Hospice nurse told me yesterday that she sees him as being on a plateau.  It can go up or down.

 

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11 Responses to 72 Hours

  1. Mary Smith says:

    Oh, Nancy, it’s straight back into it, isn’t it? I hope your short break has given you some extra reserves of strength to cope.

  2. MCI Alice says:

    I don’t know how you do it! I so appreciate your straightforward account of the reality you are facing, and that many of us will face sooner or later

  3. Paula Kaye says:

    These are the hardest times, aren’t they? Richard had lewy body dementia, not Alzheimer’s. He did some of the things you are describing: like wrapping things up and tearing up paper. And the up and down and up and down….until he was no longer able to stand. It was almost a blessing by this time. Sending you a big hug today!!

  4. Elaine says:

    Oh, you have moved way passed anything I had to deal with in regular old dementia. How incredibly hard this is. It almost sounds like you guys need a 3rd person so you can take 8 hour shifts.

  5. Annamarie says:

    Hoping you can get a 3rd person to help out now and then. This is too much for you!

  6. Your love shines through – you are amazing. Hugs.

  7. I hope you know how strong and special of a person you are…your husband is so so lucky to have someone like you. Hope your situation will allow for a third person sometime in the near future so you can get some more rest. God Bless you and your family!

  8. with a lump in my throat, I smiled to myself – brought it all back. Sharing your care-giving time is so very smart…..hope you are truly caring for yourself as well…..best thoughts and wishes for you all….

  9. Arleen Stolzenberger says:

    I was happy to read you got away. Now it’s back to reality but I’m sure your rest recharged you.
    Glad you have such great help. Bob & I keep you, Bo and Jon in our thoughts.

  10. Stay strong and God will reward you

  11. Barbie says:

    Praying that the Lord will sustain you and give you strength. Thank you for sharing your life with us!

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