Monday, November 19, 2012


The trees are brown from a hard freeze, the Sangre de Cristo mountains are streaked with snow and Pat is home. This time, I think, for good.

I used the time he was in the Rio Rancho hospital to connect with caregiving volunteer organizations, Santa Fe Senior Services and a night sitter so that I'd be ready with support when he arrived. I know now that I can't be caring for him 168 hours a week and setting up assistance at the same time. The organizations, Coming Home Connections and Palliative Care of Santa Fe, are simply wonderful and very willing to help. The Palliative Care director didn't think he's a candidate at this point for their services, so she is instead organizing a corps of neighborhood volunteers (we happen to live in the same enclave in Santa Fe) who will help me with yard work, painting the interior of the house and other odd jobs that I can't seem to get to on my own.

In addition, Pat will be back with Gentiva Home Health. This is a national home care corporation and, if they are as good elsewhere as they are here, I highly recommend them. The nurses and therapists are smart, open-minded, kind and skilled. The care they provide is covered by Medicare and families can, if need be, switch from the therapy-based care to hospice as the patient becomes less able.

The most wonderful piece of this schedule of care that I've developed with lots of help is night sitting. Kevin Long is our night-time helper, referred to me by Coming Home Connections and much praised by Palliative Care. He is kind, generous, practical, friendly and very very calm. Pat accepted his presence immediately, enabling me to sleep log-like in our guest room three nights a week. What an incredible gift! I'm transformed by it, able to be calm myself and gentle with Pat instead of frustrated and exhausted by sleepless nights.

The other profound blessing in all of this has been the loving, amazingly generous and knowledgeable presence of my cousin Molly Kelly. There is simply no one like her. Molly is a medical doctor working for UNM's Locum Tenans program, which provides temporary doctors for rural health clinics throughout New Mexico. She's worked everywhere from Raton to the Rio Grande pueblos, to the Navajo clinic at Pine Hill. She loves her work and sees herself primarily as an educator for people with little access to healthcare information, using the diseases that bring patients into the clinic as a means of teaching them about healthy diets and healthy lifestyles.

Molly helped me bring Pat up from Rio Rancho (my car blew a head gasket last week), then stayed all weekend to be Pat's helper and my support person. We've been close cousins since childhood, when our families intermingled through various life events. I can still remember my mother calling me at the Kelly's to ask if I was ready to come home. The answer was usually, "No!" and so I'd stay a few more days. The extended family lesson that we learned then endures into the present and I am so grateful. My advice to any caregiver is to get an extended family, blood relations or not, a community of people who really care what happens to you and your beloved and will step up, almost without being asked.

This morning, Pat and I were sitting at breakfast. I was spooning oatmeal with dried cranberries and walnuts into his mouth and handing him his coffee cup for each swallow. We were laughing at a Halloween card my mother sent us last month. I found that I could fully focus on him and that, as a result, he was able to respond to me. It felt like we were a couple again, together.

That's the gift of adequate support, for which I'm deeply grateful this Thanksgiving. I went too long without it--I hope that anyone reading this who is or will one day be a caregiver takes this lesson to heart. Get support. It's not just for you, though that would be reason enough. Your well-being has a vast impact on that of the person you love. It is precious.

Happy Thanksgiving, dear readers.


  1. I miss you and Pat. Kim loved talking to him, and sometimes stopped to visit as he drank his coffee outside at the French Bakery. I'm so happy he is home again with you. You are an exceptional person, Connie. A treasure to Pat and others.
    Sending much love

  2. Hurray, Connie! You've searched for help for so long, and under such desperate circumstances. So glad you've been blessed with people who can support you and Pat. Brava! And to all who are giving Pat care, I am thankful, too!


I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!