Struggling

Our roller coaster continues, but now it’s in small rolls, from deep sleep to wakefulness to speaking; from so weak that he falls,   to making it down and up the stairs; from one word responses  to greeting a guest, shaking hands and saying, “It’s good to see you.”

Each short day becomes an incredible struggle.  He sleeps 18-21 hours now.  At least, it seems as if he’s sleeping,  but he may just be lying there with his eyes closed, and when asked if he wants to get up,  he usually says no.  But today, when I went to him at 5 pm and asked if he’d like to get  up,  he said, “Yes,” and started to sit up.  Even said he had to go play golf, something he hasn’t mentioned in a very long time.

When the hospice nurse came to check on him  Monday morning,  he didn’t even respond to her,  not even when she asked for his arm to take his blood pressure, but 8 hours later he had dinner in the kitchen, mostly feeding himself although it took great effort.

We have no way of knowing anymore whether he’s in pain because we’re not sure he understands our questions.  We’re not even sure if he’s out of breath and needs oxygen, which Hospice has provided,  or if he’s just weak and tired.

Yesterday he nearly broke my heart.  He was lying on the living room sofa, where he has lain countless hours in the past few years,  and I rubbed his head and said, “I’m so sorry you feel bad, Bo.  I know it’s hard for you.”  He smiled at me and said,  “I’ll get better.” I  kissed him and walked away in tears.

Several mornings ago I heard him get out of bed and found him  holding on to the door frame of the bathroom — about three feet from his side of the bed — unable to go any farther.  I turned him around to put him back into bed, but his legs gave out  and he sank to the floor.  I had to wake up Jon to get him back into bed.  Tonight, as Jon was holding him, trying to move him from the kitchen table to  the living room,  he seemed to pass out and fell to the floor.  But then  perhaps 15 minutes later he was able to go up the stairs with Jon’s help and go to bed.  But  the same thing occurred in the bedroom.

I watch him struggle and I don’t know what to do.  Is it just his failing brain function or another blood clot in his lung or something else?  He eats and drinks very little now and  sleeps away his nights and days, seldom turning over.  Our Charlie cat has moved into the bedroom and sleeps beside him most of the day and night now, companionship that Bo likes.  Does Charlie know something that we don’t?

Charlie Cat

Charlie Cat

What I do know is that Bo is living the very life that he always dreaded, that he refused to live.  From a very young man, he would say that he will never be a vegetable, never be sitting in a wheel chair with his head hanging down; he would take his own life before that happened. He used to say that he’d be dead by the time he was 70, which always upset me.  Ironically,  he was just 71 when he was diagnosed with Alzheimer’s  — and the next 8 years he has had no real life at all.

 

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22 Responses to Struggling

  1. Paula Kaye says:

    Oh how this brought back memories to me and my recent life. I am feeling the pain in your words as you write them. God Bless you Nancy…this is the hardest journey you will ever take.

  2. Joan K. says:

    I think that Charlie cat is very intuitive, as many animals are. It’s so sweet that he provides companionship for Bo.

  3. So very hard. Prayers for you.

  4. Mary Smith says:

    I feel for you. It’s a tough journey.
    One piece of advice I was given which was useful was to accept there are no patterns to this. If dad had two or three ‘good’ days we used to start thinking we might have a few more then there would be a day in which he never seemed to wake up. Now, we know we will never be able to predict what he’ll be like on any given day, or even any given hour.
    We had episodes with dad passing out, a bit like you describe with Bo. It turned out to be seizures and he was put on medication for epilepsy which seems to be working as it hasn’t happened since.
    You are in my thoughts.

  5. Kit says:

    You are in my thoughts, Diz. The kitty knows he has a job now and that is comforting to Bo.

  6. Frances Pullen says:

    Nancy, Paula Kaye’s comment could have been written by me — every word. We have been there and know how you feel, and our hearts ache for you. I wish there were something i could do or say to lighten the load and ease the sorrow! Sending kindest thoughts and keeping you in my prayers.

  7. Maureen says:

    You’re in my thoughts and prayers.

  8. Rose says:

    Nancy, this is so very hard for you and Bo. You are in my prayers.

  9. Arleen Stolzenberger says:

    Animals seem to sense a person’s needs. Bob and I continue to keep you both in ours thoughts and prayers.

  10. marpdx58 says:

    Hi Nancy –
    My heart just aches for you. I think of you often.
    Mary Anne

  11. Is it possible his oxygen levels may be low at those times increasing the falls? This happened to my father. My mother-in-law has had Alzheimer’s for 8 years as well. She now sleeps most hours, too. Somehow, I feel she is thinking/dreaming of her good life from days gone by. Have you ever heard Bo talk coherently during sleep at night? I have heard my mother-in-law when I sleep in her room. It’s fascinating how the brain can work and it’s all happy things she says as she talks in her sleep. I cherish those moments of listening to her. I feel your sadness through your words and hope Bo is thinking of good times when he sleeps.

  12. Oh, my …. I never thought of it that way. No, I’ve never heart him talking in his sleep, but maybe …. isn’t that a nice thought. The oxygen level is a consideration. I’ve also thought that his blood pressure may drop at these times although there’s no real pattern that we can identify.

  13. dementedgirl says:

    Ohhh how sad Nancy – thinking of you…

  14. Pamela Fisk says:

    Love and hugs

  15. I think this is your most heartbreaking entry. I have had the luck to be on the receiving end of one at those moments. I have also had a chance to witness his deep level of love for you even when it seems he knows nothing else anymore. I know this is a painful, exhausting, frustrating journey for you. I can’t imagine living this nightmare and I wish there were words of comfort. However, your writing and the way the two of you have continued to care for and love each other through this despicable disease is truly inspiring. Hugs to you, Miss Nancy!

    Eileen

  16. Lisa M says:

    So sorry to read this Nancy. We are in the same place, but it really just started on Monday. I feel so bad for mom and the kids and my husband…and me. It’s hard to watch. Mom has struggled with dehydration for the past year, but I don’t think that’s what this is. Sleeping all the time. Too weak to stand on her own. I have the strength to get her up about 3 times a day – to get ready in the morning. To go to the bathroom midday and to get ready for bed. But she is taking her meals in her room – and she has no appetite. I like “Neighbor Nancy’s idea that she is living in better times in her dreams…I wouldn’t want to wake up either!

  17. I agree. I’m considering a stair chair to bring him down in the evening so he’s not stranded in our bedroom (and so I’m not stranded in our bedroom with him.) He’s actually better this week than last (when I wrote that blog.) He’s more responsive, eating mostly by himself, but since Jon had 6 teeth pulled this week and I was caring for Bo alone, he didn’t get to come downstairs for a change of scenery. I awoke him for dinner at 5 tonight. He actually ate it himself in front of the TV (hasn’t been able to watch it for years) but there was a World War II movie on, and that was his passion. Who knows? Maybe he understood it a bit?

  18. linda mclarney says:

    Nancy, my heart goes out to you. I am only just starting this journey. All though it has been coming on for years we are now in the stage of good days, bad day, good weeks bad weeks. It is hard. All I can say is all you can do at this point is love him as much as you can when he is coherent.

  19. Oh, I’m so sorry you have to go through this too.

  20. Grace says:

    Hello 🙂 Thank you for commenting on my blog earlier. This post is so heart wrenching. I haven’t had anyone in my family with Alzheimers, so I won’t pretend to know even a bit what you are going through. My dad passed quickly about 14 years ago, after a life time of heart issues. It was a massive heart attack at the kitchen counter, just moments after I spoke to him on the phone. My mother, now 82, is losing the use of her legs and arms…little by little…while her mind is still pretty sharp. I’ve often wondered what is easier on the person – to lose their mental functions or their physical functions first…or sometimes, together, as the dis-ease progresses. Just wanted to say I feel for you, and hope that you have a source of support and strength and that you practice self care whenever possible. A little aside on your kitty. He is a wonderful caretaker too, and does know. He will be there.

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