A New Reality …

(This blog continues the August 2 post,  “Some Days are Just bad ….”   Jon and Adriana left; we had another caregiver during the week, then I was alone with Bo for three days.)

Jon reminds me that every time he’s away,  Bo declines and Jon has to “bring him back.” Well,  it happened again.   Since Bo had been doing rather well up until a few days before Jon left — I could get Bo up and put him to bed,  go up and down the stairs with him,  cook for him,  sleep with him at night — the plan was that Cynthia would come the first six  days from 1-10 pm, and I would do nights, but then I would handle the weekend alone.  That was the plan.

But the plan didn’t work. Bo declined so drastically — so quickly — that he was barely conscious;  so weak that I couldn’t get him out of bed because he might fall.   He was sleeping nearly all  of the time;  we could feed him small amounts of food but it required getting him sitting upright which was hard to do. He couldn’t follow  directions to move toward the pillows or roll over.   Getting pills into him was more and more difficult (crush them,  sprinkle them,  mix them with chocolate ice cream and chocolate sauce;  even mixed a crushed pill into a spoonful of orange marmalade.)

As the week progressed,  his continued decline was different from previous ones.  I saw new changes.  By Friday, when Cynthia left at 5, I was dreading the weekend.  She would  return on Monday noon. That meant that  I was to be  alone with Bo almost 72 hours. By Saturday evening after 24 hours alone,  I was almost desperate.  He was getting harder to move, to turn, to change.

In addition, on Friday he became more agitated — not really the right word — but he simply didn’t stop moving, especially his arms.   While sleeping  he would reach his arms out as if to touch something, then pull at the sheets,  then wave his arms around again.  Was he seeing something?  Was he having hallucinations?  We have anti-agitation meds which I gave him, hoping he wouldn’t feel as restless as he appeared,  but it didn’t calm him.

Also,  his sleep apnea set in, so extreme that his gasps for air could be heard throughout the house.  For the first time, I couldn’t sleep with him.  It was impossible.  I tried the floor,  then the hallway, then finally, I moved to another bedroom and hoped he would be safe in his bed because he hadn’t moved  for days.  I watched him on the baby monitor. He was  lying there moving his arms, pulling at the bed pads and sheets with his background of  heavy snoring and yawning. Sometimes when I walked quietly into the room,  he tried to talk to me between the snores as if he was asleep and awake at the same time, but he had no real communication left,  just gibberish.

Miraculously,  on Sunday morning Cynthia texted me that she could come in the afternoon to help me. I can’t describe how relieved I was, how grateful. She was with me from 2 to 7 pm. She bathed and calmed him and together we turned him on his side so for a few hours his apnea was quiet. She insisted that I LEAVE THE HOUSE to get a break. Emma and I just drove around, then stopped to visit a friend for a short while.

I called Hospice and asked that Bo’s nurse, Ronnie, visit us on Monday morning.  “He’s aged 10 years in the past week,” she said when she saw him.  He was so weak and unresponsive that we discussed some new things:  a reclining chair, a hospital bed,  an additional caregiver, what I will do if/when he stops eating … the kinds of topics that I have avoided.  When Hospice first began coming to us,  they sent oxygen and I hid it in the back of our closet.  On Monday when he had extremely bad apnea and was struggling to breathe, Ronnie suggested using it but  I didn’t;  I knew Bo would pull it away immediately.

Did he have a urinary tract infection?  Was it constipation?  TIA’s? We don’t know.

And so the nine days passed and by the time Jon returned on Tuesday, Bo was a little better, but Jon saw the difference in him.  This bout took its toll, although  after a few days, Jon had him back downstairs.  Bo is changed though.  It’s as if there’s less life behind his eyes…  not blank, but often unfocused, sometimes asleep.

For me, it was a rough nine days of decline,  and during that time, I had to face a new reality: I need more help.  I can’t — I don’t want to — do this anymore.  And so Cynthia is coming to help regularly when Jon has days off.  I still do nights and mornings while Bo  sleeps. But I’m tired;  we’re both tired, and Bo isn’t really living.  It’s so hard to watch.

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13 Responses to A New Reality …

  1. Pauline Koch says:

    Oh my, Nancy! How hard this is for you! I wish there were easy answers! My thoughts are with you both!

  2. Cindy Gaffney says:

    Nancy, I am not sure what to say or what I can say that would be meaningful to you. No one can know except you. Imagining your emotional pain and physical exhaustion doesn’t light a candle to your realty. Just keep putting one foot in front of the other.

  3. Thank you for your candor, Nancy. More help surely makes sense to me. Keep breathing.

  4. Hi Nancy,

    It’s very possible that Bo has Lewy Body dementia as well. The flurry of motion during sleeping suggests that is a strong possibility. Mixed dementia (more than one type of dementia) diagnoses are actually more common than not.

    I’m also wondering if Bo has a history of high blood pressure. If so, he may have a history of undetected TIA’s (which may have increased with the agitation and disorientation that accompanies dementias), which could lead to vascular dementia. The steep and sudden decline you describe is a hallmark sign of vascular dementia.

    I do know that low O2 saturation can have a real whammy effect on dementias. The brain is already compromised with the dementias, but when oxygen levels get low, it has a devastating effect.

    My heart goes out to you as do my prayers. This is not an easy journey, but I admire your determination to see it through with Bo. Hugs.

  5. Mary Smith says:

    I’m glad you are going to have some extra help. I know how exhausting it is both physically and emotionally. I do think, though, it is not Jon’s being away that results in Bo’s decline, it is just that this happens. He is probably having TIAs, which happen regardless of who is doing the looking after. Much love.

  6. boomer98053 says:

    This part of your journey – well, all the parts of your journey – are difficult ones and there is truly no road map that makes it a smoother ride. I sincerely hope you, Bo, and your whole team, get to the end of the road in peace.

  7. frangipani says:

    Thank you for sharing this. My Mom is declining too, but has not reached this stage yet. I dread the thought.
    Take all the time off you can get. You’ll feel better if you’re well rested, and more able to do what needs to be done. Bo is lucky to have you.

  8. Paula Kaye says:

    I’m sorry Nancy. Sending you a big hug! Have you yet thought about nursing home placement? I am glad that Jon is back.

  9. Pingback: A New Reality … | caringhandsandhearts

  10. traceysl says:

    Hi Nancy. This is the first time in some time I’ve checked your blog. My mother died in April, on her 64th wedding anniversary. I have been hard at work putting together my company, Grand Family Planning, to help people prepare for the caregiving journey too many of us fall into without any preparation. Your story is so important. I am working to make the public aware of caregiver stories in hope that they will see themselves in those stories and take the opportunity to prepare while everyone is still healthy. I pray for your strength as you continue on your path with Bo.

    • kategresham says:

      Wonderful idea! So many people do their best with caregiving, but do it alone. Nancy your blog has such significance as you share how it is. Thank you for it and Tracey- keep on!
      Nancy, I feel so helpless reading this- I am in awe of your capacity to continue, to love and care for Bo, you are wonderful.

  11. Tracey, it’s so good to hear from you. I’m sorry about your mother. Good luck with Grand Family Planning — a wonderful idea. There is such a need for this. Thanks for your note. Nancy

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