The Roller Coaster

When I wrote the last blog,  Bo had taken a huge decline. We took him to the hospital unable to walk,  barely able to get one word out,  basically unresponsive.  He had a fever and residual pain from the blood clot in his lung.  Jon carried him to the car.

But much to everyone’s surprise, Bo rallied. Yesterday when we brought him home from the hospital, he walked into the house and, with Jon behind him, walked up the stairs to our bedroom.  At dinner time  he came back down the stairs,  sat at the kitchen table and ate dinner.  We didn’t feed him.  He used appropriate responses,  spoke a little, and was in a good mood.  After a big bowl of cherry vanilla ice cream,  he was exhausted and wanted to go back to bed for the night.

We are amazed, asking ourselves if  the fever caused this.  If he had a urinary tract infection I could understand because  they can cause confusion and weakness; and UTI’s are always looked for in the elderly.  But he didn’t have a UTI.

At the hospital the doctors and social worker suggested that in order to curtail the frequent emergency room visits,  I might consider Hospice.  That way I would have support and help at home as his condition declines.  A palliative medicine doctor (more about her later) visited with us in Bo’s room and examined him.  Her observation was that this (his condition at the time) is a sign that his body is giving in,  is beginning its inexorable shut down to the end.  I explained that he sleeps most of the day every day at home until we awaken him, and that he only gets two meals a day as a result.  She said to let his body do what it wants.  I explained the kidney stone-clot-fever hospital scenario, to which she replied that frequently dementia patients begin their final decline with something much less minor — even a bump in the leg — and then the body starts to give in.   “Enough,” it is saying.

That was Wednesday; today is Friday.  Today he knows me, tells me repeatedly that he loves me,  and is aware of his surroundings.  He ate two meals plus ice cream, and tonight he was in the kitchen joking with my friends as we played cards.  He was even making comments about the cards in our hands. (His comments are simple but sensible.)

In the hospital we met with the Hospice doctor and coordinator.  As soon as we arrived home yesterday a Hospice nurse visited the house.  Today a Hospice social worker and the head nurse for us visited the house and evaluated Bo.

I knew that accepting the Hospice philosophy might be much harder for Jon than for me.  I have made my promises to Bo.  But Jon, who  sat in on the meetings with me as we decided, loves him so much and just wants to fight for him to keep up his strength.

I felt a great relief when I met Dr. H — .  When she walked into Bo’s room,  I liked her immediately… quiet,  serene,  understanding.  This is what she deals with and it is what she knows.  For the first time in eight years, I felt a sense of relief, that there was someone who really “gets it,”  who knows what is going on with an Alzheimer’s patient. and can give me knowledgeable answers.  I have always felt alone in this. I’ve made my own path with this disease, nobody there to guide me,   say what I’m doing is right or wrong.

And so we enter another day on this roller coaster.  The hospice nurses and Dr. H — will be there to guide and help us when we need it.  They won’t be in our home on a daily or even weekly basis, but they’ll be there.

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7 Responses to The Roller Coaster

  1. LINDA MCLARNEY says:

    My heart is with you. I read all of your blogs about Bo. My Ron is in the mid stages of the disease. I watch the little changes every week. So sad the disease. .

  2. Elaine says:

    You are taking the humane path – allowing him his dignity, reducing the stress filled events (that really don’t add quality or healing) and accepting the fact that Alzheimer’s progresses to its normal end no matter what we do to slow or stop it. I can hear the relief in your posting. When my mother in law moved in with us years ago she was dying from lung cancer. She went into hospice and immediately I felt supported and understood.

    This is a good decision for you and your husband.

  3. Linda says:

    Nancy, so good you have hospice support now. They are amazing, and will care for your emotional health as much as they do Bo’s physical and emotional health. So glad you happy with Dr. H – and felt at ease with the staff and your decision.

  4. Mary Smith says:

    Great news. I’m so pleased at the turnaround in Bo’s condition and the hospice support sounds wonderful, It’s not something we have here in Scotland. There is a charity which provides nurses but that’s only for terminal cancer. I’ve never heard of any such help for people with Alzheimers.
    I know how you feel about battling on alone. It’s a bit like new motherhood, isn’t it? There are books aplenty but always the wonder if we are doing things right – and as with every baby, every person with dementia is different. I hope Bo continues to enjoy ice cream for a while – a great way to get the calorie count up.

  5. Lisa M says:

    Great news that he bounced back – and so quickly! I sometimes think antibiotics of any sort give mom more clarity and awareness. But when I said something to her doctor – I felt completely shut down and dismissed. Must be nice to be almighty. I can’t believe you found Hospice that will work with you. Mom does not qualify for any kind of help yet. Good luck on this new part of the journey. It’s so hard when they can’t tell you what’s going on and the doctor’s just don’t know either. Prayer to you my friend!

  6. Paula Kaye says:

    I am so glad that he was accepted by Hospice. I think you will find yourself feeling a big difference. No more trips to the doctor or the hospital. Just let nature take its course. It was hard for my family to accept at first but they eventually came around. It was what Richard wanted. No more doctors and no more hospital!!

  7. kategresham says:

    I am so glad you have found this support and feel some relief. Such courage and love!

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