Some days are just bad ….

Yesterday was one of those days, the really difficult kind that you can’t explain. Bo had been having a slump for 3 or 4 days — confused, not as strong, needed to be fed to keep the meal going.  Then came yesterday.

Early last evening Jon and family left for 9 days and I was alone with Bo.  He was on the living room sofa sleeping, as usual.  I prepared his dinner, then went into the room to get him up to come to the kitchen. (Jon was now gone perhaps 45 minutes. ) Bo got up with much effort on my part, and then I realized he needed very badly to stop on the way.  The bathroom is in the other direction, so I got him headed that way, holding both of his hands and walking backward to sort of pull him along.  But he wasn’t strong enough, nearly fainted, and we stopped at the base of the stairs, which we had to pass, where he could hang on to the banister while I figured out what to do.  His knees were buckling.

I ran outside and got a metal lawn chair,  grabbed a waterproof bed pad on the way, a rubber backed rug from the bathroom and got him seated.  As I kept saying,  “I’ll be with you in a moment,  don’t move!” I got a basin of water and supplies to correct the situation right there in the front hall.

When I was finished re-dressing him, I tried to get him into the kitchen.  He took 4 or 5 steps and hung precariously from the railing, so I got the chair behind him and he sat down.  Then I just put a TV tray in front of him, got myself a chair and his dinner, and fed him  there in the hall.

Friends were coming in about an hour to watch a movie, so I  propped Bo’s head on a pile of pillows on the TV tray, soothing him  and rubbing his back until they arrived.  Then Rodney and I started the job of getting Bo upstairs  to bed. FullSizeRender It was such a difficult job.  Jon knows how to handle handicapped persons so when this has happened in the past, he almost carried Bo to bed.  (One time he actually picked him up in his arms like a baby and carried him to the car.)

When we got Bo standing, our arms around him,  he couldn’t move because he didn’t know how to move his legs.  So I got in front of him and backed up the stairs,  pulling him and encouraging him with, “You can do this. You can.  Lift your leg,”   as Rodney actually moved his legs forward until he completed each separate movement.  My pulling him up helped. Finally we got to the top  where he fell to his knees and climbed the final three steps and into the bedroom where we were able to get him onto the bed. Not an easy feat.

I tucked him in,  turned out the lights and watched him on the baby monitor downstairs.  He didn’t move. I think this may just be part of the ups and downs of Alzheimer’s, but the timing was unbelievable.

It’s hard to know what to expect today. Will he be equally as weak?  or not? I plan to leave him in the bedroom and go there with him rather than risk the stairs.

Friends will be here this evening if I need help.  His other caregiver will be here afternoons and evenings all week, but I’ll probably be alone with him again next weekend until Jon returns, either Sunday or Monday.

On bad days like this,  I joke with friends, “This wasn’t part of the bargain.”  But it was.

(I am posting this story with its details because  people ask me what advanced stage Alzheimer’s is like.  This decline combined with his inability to finish sentences makes Bo so sad and, surely, he must be terribly frustrated.  I know that I am.)

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26 Responses to Some days are just bad ….

  1. Annamarie says:

    OMG. Thank God for your wonderful friends nearby. So sorry for all you and Bo are going through. Annamarie

  2. boomer98053 says:

    Thank you for posting this story. Advanced Alzheimer’s is so very difficult. Even if he was being cared for in a facility setting, the caregiving would be a difficult journey; doing so in a home setting, by loving and generous family members is virtually impossible. You’re doing a good job and employing the additional care needed to bring Bo through this disease journey.

  3. Thank you for reading my posts. It means a lot to me.

  4. Frances says:

    Yes Nancy — it’s part of the bargain, though this particular possibility didn’t enter our minds we stood exchanging marriage vows. For better, for worse . . . to love and to cherish . . . During my husband’s illness, so like Bo’s, I often commented that I was learning the truest meaning of “to love and to cherish”. It’s so very hard . . . but loving and cherishing is the mindset that keeps a caregiver going. I continue to follow your blog, which tugs at my heart every time. Please know that I care about you and Bo in your struggles! You are taking wonderful care of your Bo, and Jon is a blessing, to be sure.

  5. Paula Kaye says:

    Maybe it is time to put a bed somewhere downstairs. I cannot imagine trying to get Richard up the stairs when he was like this. We put the hospital bed right in our living room and all his care was done right there. And he was always in the room with us! I know how hard this is!! Blessings and big hugs, Nancy!

  6. Mary Smith says:

    Oh my goodness, that was more than just a bad day. I am so glad the Goldfish lived in a bungalow and we didn’t have to tackle stairs. When he was using a wheelchair later we ended up with a boat winch as neither my sister nor I could push the chair up the ramp at the door (I’ll be blogging about it this adventure at some point).
    Would it be posible to instal a stair chair?

  7. Yes, it would be possible. I thought we might need it last year but then things got better. He usually walks up or down, one foot past the other without difficulty although we watch him closely.

    • Mary Smith says:

      There’s just no pattern is there? It can be downhill for ages then things seem okay again and you never know how things will the next week. Thinking of you both.

  8. says:

    Hi Nancy.  Just read your blog and  I feel your pain.   I was wondering if you have a wheelchair.  One could be a big help to you, and Boris.  lovepatSent from XFINITY Connect Mobile App

  9. Actually, I do have a portable wheelchair, but since cleaning was involved, I just thought of a chair that wouldn’t be damaged. We have used the wheelchair a couple of times, once when he was getting out of the car and began to go down.

  10. frangipani says:

    Thinking of you with lots of love. *hugs*

  11. Thinking of you and your familly- had I lived Close by i would have come right over and help you for a while.
    Sending you, Bo and the rest of your familly lots of energy and love from Stockholm, Sweden.

  12. Thank you. How lovely it would be to meet. Nancy

  13. dianne says:

    Oh my Nancy…..Just sending love, hugs, and prayers your way……dianne

  14. Ine says:

    Sending you love and strength. Miss dropping by for a quick “hello” to see how you are doing.

  15. Frances says:

    Nancy, I keep picturing the scenario you described and I agree with Mary that it’s time for a stair lift before you injure yourself in the effort to move Bo up the stairs on bad days like the one you described. It would be a load off your mind and body (Jon’s too) if going up and down stairs was a easy as strapping Bo into the chair and pressing a button. I think — but am not sure — that Medicare helps pay for a stair chair lift if the doctor writes a recommendation for one. I’m glad you have a wheelchair available. How about a wheeling walker with built-in seat? It’s not easy to have to face the reality that these items are now needed, but please give serious thought to getting the equipment — for your sake, Jon’s sake, and Bo’s.
    Hugs to you!

  16. You are right. I actually looked into a stair chair last year when we thought things were going so badly but then he got a lot better and usually walks up or down, foot-over-foot easily (holding on to the railing.) Hospice is sending me a special lift belt and a transfer board this week. Thanks so much for your thoughts….it means a lot to me.

  17. Karen says:

    You might want to check into a Hoyer Lift also. It would not help with the stair issue but downstairs when he starts/or does go down you would be able to get him back up and into bed or a sofa. The lift became my best friend when caring for my father-in-law. Good luck with all you are doing and please take care.

  18. MCI Alice says:

    I agree about lifts, stair chairs, possibly setting him up downstairs. Whatever it takes to make caregiving easier for you and more doable. You do not want to hurt yourself, for your sake and Bo’s. And do not hesitate to print “The details”. As I journey through the early stages with Ralph, it is so important to read what you have to say about your experience….

  19. I really appreciate your thoughts — and your loyalty to my blog. It means so much to me.

  20. MCI Alice says:

    ps I just quoted you; hope that’s ok

  21. Pauline Koch says:

    Nancy, I missed this earlier. How hard this was for both of you! You have done a wonderful job of getting support for you and Bo and for keeping life as normal as possible. You continue to amaze me and it is wonderful that you share with us yours and Bo’s difficult journey. Please take care.

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