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(c) 2010 Sherman Lambert

Apparently it’s not too late to get more support. All I’ve heard from other people is how hospice care for their loved ones has helped them, too. And, yet, I mostly feel that the hospice service has fulfilled its promise only to Mom—and that’s really a maybe since I haven’t gotten much information from them.

Still, as I further digested being left out of the equation about Mom’s dietary need changes, I realized that’s not how it’s supposed to happen. I have a cell phone and voice mail—I’m not inaccessible. At my Alzheimer’s support meeting on Wednesday, my explanation for what had happened rang a little hollow. It’s one thing to be upset about a change, but it’s another thing not to know about it. A conversation with my therapist the next day also helped me clarify my thoughts on the matter.

The more I looked back, the less I saw that I liked. Mom’s been under hospice care for two months now. I was told I’d receive calls from the nurse after she visited, plus she would write in a notebook put inside the nightstand. The notebook’s last entry is December 7. I believe I’ve received about two calls, both back in November or early December. Yes, when I call, I do get responses, but I have to initiate the contact.

One of those contacts wasn’t really that satisfactory if I think harder about it. Turns out Mom’s regular nurse had two weeks off at Christmas and time off at Thanksgiving. I am sure she deserves the time as caring for dying people must be so incredibly draining. But my mom doesn’t get a holiday from hospice needs—although I know she received care during those times, we didn’t really know how that went.

Because I was seeing mixed signs in her health, I called for an update. Her regular nurse was back on the job, but first had to review notes and then visit her before she could give me that update.

I think that’s a systemic failure. The organization should not only have nursing care covered for its patients, but also should have communications systems set in place to allow smooth transitions whenever its regular employees take well-deserved vacation days. If anything, most of us need more support not less during the holidays.

Part of my problem is that I don’t appear needy and it takes me awhile to notice when promises are not met. Nonetheless, that’s really not an excuse for not having the system set up to offer me help whether or not I ask for it.

The few times I met the nurse, she was running way behind due to emergencies. Surely the nature of hospice is often emergencies—does the company schedule its staff to allow for that? Or do the nurses have to pay the piper if they feel it’s important to give one patient more time—by giving the next patient less time? Or does the scheduler just keep them caring for patients all day, leaving little energy for reaching out to family?

So last night I steeled myself to go try to feed my mom again. I came straight from yoga—which often leaves me calmer—but when I had finished class, I was a bit upset. During relaxation our words for focus were “Let Be.” Surprisingly similar to “Let it Be,” no?

Although I know a big part of my job now is to let things happen as they must, that doesn’t mean we have to go through this transition without the support we are supposed to have available. Thank you to the staff at Mom’s facility for pointing out that not only weren’t we getting what was normally offered, but that we could still change providers to get our needs met, even at this late stage.

Yesterday Mom showed more signs of decline. The hospice chaplain had visited her earlier in the day and called me saying the facility staff told him she was slowing down in the last few days. Apparently, someone from hospice had also visited to bathe her. Despite the visits and noted changes, I had heard nothing from hospice from a medical perspective.

Look, this is pretty much my first experience dealing with hospice care on my own. Mom was really the one who handled this transition with Dad, even though we visited and tried to understand the process. All I know is that over the last two months I personally have gained very little from an experience so many cannot say enough good about: hospice. And Mom can’t tell me how well hospice has served her.

As soon as the facility director told me it wasn’t too late to get some better help for these final days, I agreed to their help with the changeover.

Part of me feels bad that I didn’t first voice my opinions to the first group, but the other part of me thinks, “Hey, it’s my mom who is dying.” Today I had to hang up my operations hat and put on my daughter hat.

That means I have more important things on my agenda than helping them improve how they handle patients. Of course, when I filled out the final paperwork, I did give the organization my reasons for the change, but I wasn’t interested in “fixing” our situation with them. At this point, my mom needs care from another source. End of conversation.

As I left her care residence today, a whole new team was busy conferring over what both Mom and our family needs. So glad to find people to hold all our hands on this journey . . .

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(c) 2010 Sherman Lambert

Consider this blog post my way of raising a cyber-glass to 2011.

Yes, I know we’re already 1/3 of the way into January by now, but I’m very much behind. Now that the kids go to college, it seems harder to get started with my typical beginning of the new year activities. Turns out I’m used to being left alone not long after New Year’s Day, doing dull things such as filing away the previous year and setting out a folder for incoming taxes. Those activities then lead to thoughts on what lies ahead.

But last weekend I was just thinking about how the kids were going to get everything packed into their car and whether the snow would make their return trip dangerous. My mind was focused on the very short-term. In fact, it hadn’t occurred to me that maybe I was going to miss them when they left.

Not until their car pulled out of the driveway with its brand new tires (and a spare) did I “get” that. I was just checking off tasks on a list.

When they first started college, we left them. On that Saturday in late August, we took our car and headed home via a short trip to Taos, New Mexico.

This time there’s no Taos, no big house-painting project, no overwhelming need to sleep off years of exhaustion to distract us from their absence.

Instead we have the openness of rooms emptied of extra clothes, shoes, and whatever else the kids took back with them. In fact, when I slow down enough to notice, I really can feel the fresh beginning that comes once we’ve taken down the Christmas tree and prepare to move into whatever comes next.

However, this year I do not welcome some of what comes next.

After all, my mom is still in hospice care—just because she made it into 2011 doesn’t mean she isn’t on her final journey. Yet, over the last few weeks whenever I came back from visiting her, I could return home to the noise and chaos of a household of people to distract me from that fact. I could see forward movement in my kids in this time when their lives are expanding.

Although Mom’s decline contrasted with their growth, she appeared to have regained some strength. So after the initial shock of her improved health, I think I was expecting to settle into a bit of a holding pattern this month—even if I knew the end result of what the year would bring.

What I now know is that part of me was hoping not to face that quite so alone—somehow it seemed it might be easier with my kids around to enjoy—and to support me.

Imagine my surprise last night when I arrived to feed her only to discover she has begun a pureed diet. If you know me, though, I initially roll with the punches. I just sat down to try what I’d been doing for her—helping her to eat—in a different way.

That eating has been going well for her has been a sign that she wasn’t done here yet. But part of the end process—whether for her Alzheimer’s or kidney disease—is that her body will stop accepting food. This eating method change means she is arriving at another stage—and that I may be losing one of the few constructive things I can do for her.

My touch, voice, and presence are the gifts that remain in these days ahead.

Last night as I left her there, I was so rattled I could hardly turn the car home. I was in need of a gift—which I got. Sometimes all any of us has is to remain open to hearing unbidden words. As I heard the beginning strains of “Let it Be” coming from the radio speakers, I relaxed enough to carry on with my travels for a few more minutes.

Let it be, indeed. Once home, I opened my door to our now uncluttered front room and felt the suggestion of possibility in this year, even as I prepared to face a loss such as this. There is still a light that shines on me . . .

To 2011.

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(c) 2009, Christiana Lambert