Vacation, interrupted

My 50th birthday is Thursday, Oct. 22. And, according to a prediction by a nurse at the Alz center, Mom could die that day. Or even sooner. Patrick and I long ago planned a week in Bald Head Island, NC, a favorite spot of ours, for a celebration of this birthday. We went to London for his 50th birthday last winter to see a series of soccer matches. Bald Head Island is more my speed: not much to do, no cars, maritime forest, natural beauty at every turn, kind people, a familiar setting (this is our 11th or 12th visit since 2005). We arrived Sunday evening, and we are leaving tomorrow, Wednesday morning, three days earlier than planned.

The last time I saw Mom, she seemed to be doing OK. Compromised physically, but able to eat and even say a few words. The week leading up to the vacation was typically hectic at work, and I wasn’t able to see Mom before I left. But I knew I would be home on Sunday, Oct. 25, and thought I could get back on schedule to feed her lunch that day.

I got a call from a hospice nurse on the drive to North Carolina on Sunday. Mom had appeared to be in some respiratory distress, and had been agitated, so she was given anti-anxiety meds and had calmed down. It appeared she might be having some trouble swallowing, which is a classic sign of end-stage Alzheimer’s. My interpretation was that that would be something to watch for.

On Monday, my main nurse contact at the Alz center called to update me, but I missed her call. A different nurse – a manager – told me when I called back that the hospice company had recommended withdrawing food because Mom was at risk for choking or aspirating. But he said that was against the Alz center policy – food is given as long as it can provide comfort. It being close to lunchtime, I assumed that meant that Mom would be fed.

When I finally connected with the nurse I am closest to, she told me she didn’t think Mom’s lungs were a problem, but that some gurgling and wheezing sounds were coming from her upper airway – also an indication of the potential for problems swallowing. This nurse gave Mom some drops to treat the dryness in her throat, and she said Mom seemed very interested in having something in her mouth – as if she wanted some food or drink. She agreed that Mom should receive food as long as she was alert and interested, because it was a source of comfort and pleasure for patients who don’t have much else to look forward to.

The suggestion that Mom would not be fed – while she was still alert, breathing fairly normally and showing enough strength to repeatedly pull an oxygen mask off of her face – surprised and angered me, as the hospice nurse hadn’t said any such thing to me on the phone on Sunday. After talking to my nurse friend, I called the hospice social worker to complain, and she said she’d look into it and assumed there might have been a misunderstanding. I called back to the Alz center at around 2 to discover Mom had not been given a lunch. I insisted that someone feed her a goddamn meal, and to puree her food if necessary to prevent choking. An aide got right to it.

When nobody called me before or during a long walk around the island today, I felt some relief that no news about Mom was good news. And then my main nurse contact called me at 3 in the afternoon, the end of her shift. Mom had changed significantly in one day. She ate yesterday, but could not swallow today. She had a persistent fever that didn’t respond to Tylenol – a suggestion that the part of her brain that regulates body temperature might have been damaged by the disease. The rapid progression suggested to her that it could be a matter of a day or two until Mom dies – though one never really knows for sure. When I said I would head back to Columbus, she said, “Don’t rush. Don’t get into an accident. If something happens before you get here, just know you have been a good daughter to Bonnie.”

So Patrick and I will hit the road tomorrow. My brother and my sister and her family are looking into flight possibilities. Mom is being kept comfortable, mostly with morphine. Selfishly, I’d like one more visit with her before she dies. Just to squeeze her hand, brush her hair from her face and tell her goodbye. But for her sake, the sooner she is at rest, the better. This life of hers is not worth living, and hasn’t been for months. The nurse even said that if Mom dies before I can get there, it could be the way Mom wanted it – to spare her children the agony of a death watch. If that’s the case, I’m comforted knowing that the sights, smells, sounds and touches of those around her are very familiar. Before she leaves this earth, Mom will be surrounded by the Alz center staff members I so admire – and the closest thing to family that Mom has known for more than six years.

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5 comments so far

  1. Kevin Ewy on

    I’m sorry to hear of the news / update – and at a bad time for you – hang in there – Kevin

  2. Gemma McLuckie on

    The last mile of the long road can be both the toughest and the most longed for. Wishing you and Bonnie a soft, sweet homecoming.

  3. Suzanne on

    I missed saying goodbye one last time by just 10 minutes — and the Hospice nurse said that’s probably the way she wanted it. My heart goes out to you.

  4. Marie on

    I am so very sorry. Sending positive thoughts for strength and comfort.

  5. momsbrain on

    Thank you all for the kind words and support.


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