Roller Coaster … Continued

(I actually wrote most of   this blog the first week of September,  right after Bo came home from the hospital  the third time, but  he returned to the hospital the day after I started this and I never posted it. )

Things have changed drastically.

I must be honest with myself —  to look at Bo and see him as  as others must see him, not through my wishful lenses, but realistically —  and when I look at him in this way,  I see how seriously he has declined.  And so fast.  It’s as if he went into the hospital as one man and came out another, and since he’s been home this third time,  he has declined even more.

He seems to be withdrawing into himself. Not unconscious, not conscious, but somewhere in between.

Before, when he called me by my name or  when he asked where I was and waited for me,  I knew that for that moment he knew me,  and I wanted to believe that he needed me, that he would be lost without me.  That he was maybe even better than he appeared.

But yesterday and today,  he hasn’t asked for anything or anybody.  He hasn’t really even wanted to open his eyes or speak or eat or drink.  At times he seems almost unresponsive.  We’ve struggled to give him pills or even orange juice.  I’ve heard many times of Alzheimer’s patients seeming to decide to stop eating and drinking and bringing about their end.

Today he  can barely walk,  taking weak little steps,  almost falling backward unless we are guiding him with both hands.   Jon has to actually get him up or down the stairs; I couldn’t do it.  He’s confused by most things, doesn’t recognize common things.  He doesn’t want to feed himself or even get up to go to the bathroom.  And his remaining language right now is curse words, no doubt because the other words elude him.  If we bother him or move him too much,  he curses.  Always a sweet, kind  man,  he surprises me sometimes when he is annoyed by something simple.

Today he didn’t know how to put on his shoes, how to brush his teeth or shave, and was too weak to stand at the bathroom sink.  His head went down, and then he leaned weakly, needing to be guided by both hands to the bed or a chair. And once  he’s in a chair, he slouches  and nearly slides out of it.

And I wonder.  It’s as if he has slipped into another stage, almost into another consciousness.  And I look at him and ask myself how I will do without him, but I will have to because he cannot go on like this indefinitely.

Jon and I discuss what we will do next, how we’ll care for him.  Will we keep him upstairs?   Do I need to hire a third person who can are for Bo so we can sleep?  Will I have to find a skilled nursing residence for him soon?

______________________

Now it’s more than a week after that blog was written.  Bo returned to the hospital with a fever,  was hydrated and cared for and returned home two days later.  Although he came home and I wrote the blog about his improvement,  I signed on to Hospice and they began their extraordinary support.  And the reality  is that Bo has declined again, almost  back to  where I described him at the beginning of this blog, before his last trip to the hospital.    He knows me and wants me nearby.  He has lost even more weight and obviously feels terrible, everything an excruciating effort, even holding his head up.   He has no life.  The sadness is overwhelming.

 

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16 Responses to Roller Coaster … Continued

  1. I feel your pain. I know when my mother-in-law was in the final few months of her life, we had in-home hospice care, which was such a relief for the family. If that is a possibility for your husband, Bo, you might find your situation bearable again. I am praying for you and your family during this difficult time.

  2. Mary Smith says:

    So, so sorry to hear of Bo’s decline. But remember how he picked up last week so perhaps he will rally again, even for a short time. It’s impossible to know what to do for the best. I’m glad you have hospice support. Thinking of you.

  3. Jo Ann Kohler says:

    My thoughts and prayers are with you and Bo.

  4. Truly sorry for what you are going through. Thoughts and prayers for your family.

  5. Thank you for sharing your intimate thoughts and know we are there feeling for you.

  6. Maureen says:

    There are no words. You’re all in my thoughts and prayers.

  7. Dear Nancy,
    There are no words to ease your pain, but know that your blog lifts me up in a profound way. You are in my thoughts and prayers everyday.
    Kathe S.

  8. Lisa M says:

    Nancy, I am so sorry to hear about Bo’s decline. The step down that comes after an illness or hospital stay is so extreme – it’s shocking and so hard to deal with. I am sorry you are going through it all so quickly. I know for mom, keeping her hydrated (which is a monumental task) makes a big difference in her overall well-being. Prayers coming your way!

  9. dementedgirl says:

    Oh gosh – I don’t know what to say Nancy. I am so sorry that you have so much to deal with at the moment, and, of course, for Bo. Wishing you all the best from afar….

  10. Cheryl Simone says:

    Dear Nancy
    Please know that you and Bo are in my thoughts and prayers at this very difficult time. I can only hope that Bo is not suffering tremendously. But you are strong and must continue to be strong for Bo, your new family, and for yourself; that is what Bo would have expected of you through this incredibly difficult journey.
    Cheryl

  11. Arleen Stolzenberger says:

    I am overwhelmed with sadness for you, Bo and Jon. I know you and Jon will be strong and make the right decision no matter how hard it may be. You all continue to be in our thoughts and prayers.

  12. Paula Kaye says:

    Nancy I am so sorry. It is so hard to watch as our loved ones decline and know that there isn’t a thing we can do. Love him while you have him. I’m sending you prayers

  13. marpdx58 says:

    You and Bo are in my thoughts very often. Take care –
    Mary Anne

  14. MCI Alice says:

    One foot in front of the other is the best anyone can do at a time like this. But hospice is a wonderful program (I just signed my mother up yesterday.) My thoughts are with you

  15. thom sweeney says:

    Nancy, Your situation brings tears to my eye….for many reasons. By reading the other posts, everyone’s love for you and Bo is palpable, and that must be (admittedly in some SMALL way) be very heartening to you. Please add my love and prayers to all the others. I can’t tell you what your blogs have meant to me.

  16. rosemary says:

    God give you strength to face what lies ahead, you are a strong woman and will be able to continue. My heart agonizes over what you are going through and I only hope I would not have to go through the same thing with my mother who is declining but not as fast as Bo. You have motivated me with your strength. Thanks a lot for taking the time to write your experiences.

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