Friday, January 02, 2009

Assistance, Assorted

We had awful weather here today: high winds and rain mixed with snow. I was worried that this would complicate our lunch arrangements, and I was also concerned about Dad, who'd seemed very confused last night. When I spoke to him on the phone this morning, though, he seemed much more alert, so I was relieved.

When I got to the apartment, however, Fran announced that she's definitely leaving, and that if she can't get another Section 8 apartment, she'll live in a shelter/hostel. Our friend Katharine reported a later conversation which indicates that Fran expects to wait only a few months for another Section 8 apartment to open up: she still doesn't understand that she's bound to a year lease here, and can't get another Section 8 lease until this one's expired.

* begin rant *

Fran has a long history of bouncing back and forth between Chicago and wherever my Dad happens to be living, but in this case, it's really infuriating. Dad (who isn't exactly made of money, with Social Security income of less than $1,400/month) paid her plane fare and moving costs to Reno, has promised to pay any of her medical bills not covered by Medicaid, and has been her best friend for twenty years. The fact that she wants to abandon him because he's not "fun" anymore, and because she's uncomfortable with his physical condition, makes me crazy. Does she think this is a laugh riot for the rest of us? Plus, we're in effect her family, since she's estranged from her own.

Intellectually, I know that she's been under hideous stress, and that she's trying to escape back to an older, happier life that no longer exists, and that she's also desperately trying to avoid having to face both Dad's mortality and her own -- but since my father's the one being abandoned, my intellectual understanding only takes me so far.

Several friends to whom I've talked about this have made sympathetic noises and said, "Well, you know, you can't blame her." And that response makes me really crazy. I wouldn't blame her for thinking about running away -- I can't count the number of times each day I daydream about getting on a plane for Hawai'i -- but I will blame her if she actually leaves, just as I'd blame anyone who walked out on a household member who suddenly needed greater care: child or parent or pet.

Fran, to her credit, kept saying to my father, "I feel really guilty about this."

And my father, to his credit, kept saying (very, very gently), "You should." Good for him!

* end rant *

Whew. Glad I got that out of my system. So, anyway, we had to leave to meet Katharine and her father downstairs almost immediately after Fran dropped that bombshell. I was fuming, and struggling with my father's wheelchair and oxygen didn't improve my mood. (The home-oxygen company never got around to delivering the additional small, portable tanks we wanted -- although Dad has a concentrator and lots of large tanks -- so Gary pushed a big tank in a wheeled stand while I pushed the wheelchair.) We got out into the pouring rain, got Dad and Fran and the oxygen tank into the car, got the wheelchair into Katharine's SUV, which holds it more easily than my tiny Ford Escort does, and drove to the Senior Center from Hell.

Maybe it isn't always the Senior Center from Hell. Maybe everyone was in a bad mood because of the weather and accumulated holiday stress. But while the staff was nice and helpful enough, many of the other clients were, to our bewilderment, downright nasty. The man sitting alone at the table where we chose to settle first snarled at us and then bombarded Gary with a long monologue (okay, so he's probably lonely); when we were jockeying around trying to get settled, in a group containing two people with canes, one person in a wheelchair with oxygen, and three people with profound hearing loss, a man at the next table over yelled at us, "Sit down and shut up!"; and every time I went back and forth between our table and the cafeteria line, someone glared at me.


My two theories about this are: 1) Some of the old, infirm people who were by themselves may have reacted badly to seeing elders accompanied by younger, more able-bodied family, and 2) Some of the old, still relatively able-bodied people may have felt threatened by seeing more infirm elderly people, grim reminders of their possible futures. (This would tie in with my perceptions of what's going on with Fran.) I've decided that old age really is, in some ways, like second childhood, and kids are notoriously unkind to the most vulnerable among them. Insecurity makes mammals mean, whatever their age.

In any case, it was uncomfortable, and the place was way too loud for anything approaching conversation, especially given the cumulative hearing loss in our group, and the food was mediocre at best, although I'm sure they're dealing with budget cutbacks like everybody else.

Afterwards, we wrestled the equipment back into various cars and drove back to Dad and Fran's apartment. After Gary and I had gotten the wheelchair out of the SUV, Katharine beckoned me over to her driver's-side window and said, "Call me later. We need to talk. Your father definitely needs to be in assisted living, especially if Fran leaves."

That sent me into an emotional tailspin. Move him again? He's miserable in institutions. How much more of this can he take? We've already seen what passes for assisted living at the VA's "Community Living Center" (CLC), a place depressing beyond words, and what else could any of us afford?

Back upstairs, Dad wanted me to spend the afternoon with him. I dithered and then, in my own escape mode, said, "Dad, I'm meeting a friend for coffee at 4:00, and I really need to swim before then."

"You need to swim?" he asked, squinting at me.

"Yes, I do. My back's bothering me, and my mood's not great right now, and you need me on my feet and healthy."

He agreed, thankfully, and I drove Gary home -- he's handled Dad and Fran very well, but he's as exhausted as any of us, and is of course dealing with his own emotional and family issues -- and then swam. The other person in my lane at the pool was a friend from work, who probably got more of an earful than she wanted. (Asking me "How are you?" is a little dangerous right now!)

Swimming made me feel marginally better. Then I drove through heavy rain and the beginning of what looked like scary snow to meet my friend Nancy, a fellow volunteer chaplain and former pediatric hospice nurse. She'd suggested coffee after catching up on the last several weeks of my blog, but since leaving Dad's house, I'd been wondering if I should have cancelled to spend more time with him.

I'm so glad I didn't! Nancy was wonderful, a perfect friend and chaplain. She said, "I'm here to listen," and then validated every feeling I was having or might possibly have. She told me God forgives me for my less than charitable thoughts about Fran, and when I vented about Fran, she didn't say, "You can't blame her." Instead she said, "How dare she!", and later on, when I was doing the I-know-Fran's-really-stressed-out-too disclaimer, Nancy interrupted and said, "Susan, stop being fair and pastoral. That isn't your job right now. Your job's to be the daughter."

She offered to use her VA contacts to try to get information for me, and wrote down a list of questions. (Are there VA assisted-living places other than the CLC? Is there any way to get home healthcare without my father being on Medicaid, as one social worker told me? Can we get a social worker to come to Dad's house?) She promised to send me -- and has already sent -- the name and phone number of an independent home healthcare person she knows and trusts, who charges less than the $20/hour, two-hour minimum the agencies do. She worked with me to make a list of small, concrete, useful things I can do:

1. Sit down and write out a list of all of Dad's meds/dosages/frequencies. I meant to get this from the VA, but haven't yet. Then start researching the list to see what each med does, running it by Nancy when I need to.

2. Bump up Dad's oxygen, after notifying his doctor, to see if that clears up his recent cognitive issues.

3. After showing the meds list to a pharmacist, think about putting Dad on COQ10, an OTC vitamin that may help boost his hemoglobin.

Nancy also gave me a lovely and very unexpected holiday gift: a set of coconut-and-lime handsoap and lotion. I love the smell: it reminds me of Hawai'i!

It was a wonderful visit, which was a good thing, because when I got home (at least the snow had stopped!), I found a $3,857 bill from the cardiologist who took care of Dad during his first Reno hospitalization. This is on top of a $423.00 radiology bill from the same hospital visit and a $644.00 emergency-physician bill. On Wednesday, I have to go to the VA to hand in Dad's annual means test, which the clerk said the computer wouldn't accept before the 1/7 due date (!). I plan to go from the eligibility office to the Fee Basis office, where I'll argue that since the VA wouldn't accept Dad's ambulance that first time, the resulting bills should be the VA's responsibility. (I'll have Dad's Medicaid-denial letter in hand, since the VA has to be the payer of last resort in these cases; if Dad winds up having to pay after all, he'll be down to Medicaid-eligible levels in no time.)

After dinner, I called Katharine, who said, "I watched you struggling with all that stuff today and I couldn't believe it. Poor Susan! At least my father's able-bodied!"

We kicked around assisted-living ideas, since she's done research for her own folks. (Our most creative concept was to have our two fathers room together, although for various reasons, I'm not sure that would work.)

But I also voiced my resistance to assisted living. My father would hate it. It would make him miserable. He doesn't eat well in institutions; he does much better at home if someone's there to coax him. (Fran's been doing an excellent job of this, as I've repeatedly told her; Nancy said, though, that Dad's not burning many calories, so we shouldn't worry too much about his intake.) I'm probably not going to have him for too much longer, and I want him to be as happy as he can for the duration. If that means hiring home healthcare, calling him two times a day to check on him, and visiting at least once a day, I'm willing, at least for now. His apartment's three-tenths of a mile from my parking lot at work; I could easily go over there to have lunch even on days I teach.

I also said, and meant it, "You know, despite everything, I'm glad he's here. I'm glad I can spend time with him. It's a privilege to take care of him."

Now I just have to figure out the best way to do that, while also taking care of myself and not straining Gary's patience to the breaking point.


  1. Susan,
    I know you're under a terrible strain. Please enjoy enery single second with your father. Even for grown women with husbands, the world is a scary place without your dad.

  2. Susan, you don't just have a full plate, you have a trayful! I'm not surprised you needed to rant. Thanks be to God for good friends/chaplains.

  3. Susan,
    I know this is difficult, having gone through the same thing myself, down to sitting in traffic and wishing my father would go ahead and die since he was so miserable. Looking back, though, it was incredibly healing to our relationship and you're right, it was a privilege.

    10 years ago, the state of Nevada had an ombudsman for elderly/medicare issues. He was fabulous, both on the phone and in the extensive materials he sent me. Look in the phone book under State of Nevada.

  4. Susan,
    Amen to what Julie and Nancy said! He's special and wants to be with you! Lucky woman!

    Peace! & Hope!

  5. Anonymous8:14 AM

    Dear Susan,

    Thanks, as ever, for continuing to keep us posted about your family saga.

    Dealing with my own family stuff, your example continues to inspire me.

    Love and prayer,


  6. Thanks so much, everyone. These comments mean a lot to me! (And Jean, good luck!)


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