Wednesday, March 18, 2009


We've been up and down around here, with the latest emphasis -- unfortunately -- on down.

To recap: As you'll recall, Dad was released from the hospital Thursday after treatment for severe edema, and went to a nursing home. On Friday, I noticed that his left arm was swollen. It hadn't been in the hospital, and his right arm was normal. I mentioned it to the nurse and doctor, but didn't hear anything.

On Saturday, his right arm was really swollen. I pointed this out to a nurse, who called the doctor, who decided to send Dad to the ER to make sure he didn't have a blood clot. No, he didn't, thank God; but the ER doc, who'd seen Dad before, said, "You really ought to start thinking about hospice or palliative care, because otherwise he's just going to spend the rest of his life in and out of the hospital."

Back in the nursing home, Dad was sleepy on Sunday -- not surprising, since he'd gotten to sleep at 2 a.m. after the hospital adventure -- but cogent. Monday he did really well: ate all his lunch and dinner, went to PT, and (according to the doctor; the physical therapist disputes this) rolled himself back in his wheelchair from PT. The doctor, whom we like a lot, went over his lab values with me. His kidneys were doing great; his BNP was still high at 1475, but at least had gone down from the 1900 he had when he was in the hospital. I mentioned what the ER doc had said about hospice/palliative, and the nursing-home doc said, "Well, call hospice and make an appointment to talk to them, just to get your ducks in a row. You'll want to talk to the social worker, too. But's let give him a week to see how he does in rehab."

On Monday, I left much cheered. Dad was with it and reasonably cheerful, and had asked for his cellphone so he could make long-distance calls.

Yesterday, Gary and I went to the nursing home with the cellphone and a new portable radio for Dad. He was in horrible shape: very swollen and in some other reality. He recognized Gary, but thought I was my sister. He told us about the bugs who came to visit him, ten or fifteen at a time. They're his ancestors but look like Disney characters, and they help him by telling him when to go to sleep, but then they disappear under a mushroom. He had bizarre tremors and jerking movements. I summoned a nurse, who checked him over and found no immediate reason to send him to the hospital, but told me it was up to me. "This is baseline for him."

"Being this altered isn't baseline for him," I said, but meanwhile Gary was explaining that we didn't want to torture Dad by sending him back to the hospital, which was true, and the nurse said she'd call the doctor (although we never found out what came of that) and tell me if he advised rehospitalization.

I was in tears, but I was also hungry, but I also couldn't stand to leave Dad. Gary said, "Let's go home and have dinner, and you can come back later," and that was a good compromise, so that was what I did. I got back to the nursing home around 8:30 and stayed until around 10:30, just sitting next to Dad's bed. He was asleep, but talking and moving around, reaching for things; at first he kept reaching for something over his head, but then the arm movements changed and it looked like he was trying to turn an invisible doorknob, and meanwhile he was carrying on gibberish conversations I couldn't make out. He didn't know I was there. The nurse stopped by and showed me how he was a little less swollen than before; his extremities were warmer and his color was better, and she'd gotten him to eat some dinner, so that was all good news. But sitting there, trying to decode his dream or whatever it was, I felt absolutely helpless (which, of course, I was).

I went back home and crashed. Oh, I forgot to mention that the day before yesterday, we also took Harley and Figgy to the vet; today was Bali's turn. Harley's lost a bit too much weight, and Bali's gained a bit too much weight, so we're supposed to limit his diet (ha!), and Harley has a UTI -- what is it with UTIs right now? -- and has to take antibiotics for the next two weeks, and may also have early kidney disease. They've been tracking that for a while, but I really hope it's not actively developing. No more chronic medical crises, please!

Anyway, after today's vet appointment, we went to the nursing home to meet with the hospice lady, who was very nice. (In the meantime, the very diligent nursing-home doc called me to report that he's adjusting Dad's meds to try to get more fluids off him.) Gary and I spoke to her in a conference room, and after she'd asked me about Dad's history, she said, "It sounds like he qualifies for hospice." Then we all trooped down to Dad's room so she could meet him.

She introduced herself cheerfully and did a basic exam: looking at the edema in both arms and legs, listening to his chest. He was coherent enough to have a simple conversation with her. "He definitely qualifies," she said quietly. (I'd told Dad we were meeting with someone from hospice today, "just in case," but when I told him who she was, he grew suddenly quieter too.) When she was leaving, I followed her out into the hall and asked her for her assessment of how long he has left. "I'd say a month," she said. She emphasized that she could be wrong, but that estimate feels right to both me and Gary.

Gary and I went back into the room. Dad was being hauled out of bed -- a complicated process, rendered more difficult by his water weight -- to be taken for a shower. When he got back, he was pretty out of it again, and showed no recognition when I said, "I love you, Dad. I'll see you tomorrow."

Leaving, I was in tears again. I got hugs from several people at the nursing station (including someone from church who works there), and managed to have a helpful conversation with the social worker about finances. Medicare covers hospice completely, but won't cover hospice and an SNF, so if Dad stays in the nursing home -- and I can't imagine his being able to go back to assisted living -- we'll have to use his assets to pay those costs until he's eligible for Medicaid. The social worker gave me the Medicaid application.

Oh, I've also had periodic conversations with Dad's physical therapist, who says she can hardly get him to do anything because he's just too weak. I gather speech therapy's going a little better; I don't know anything about occupational.

But, barring a semi-miraculous turnaound of the type Mom pulled off, I suspect that on Monday, we'll be putting Dad in hospice and arranging to let go of the assisted-living place. ("Another move," Gary said gloomily as we walked back to the car.) I hope I'm wrong about all of that.

Meanwhile, the good news is that Mom's back home and doing decently, I think, although both she and my sister are being slightly guarded in their reports. Today, though, my sister reported that she'd given Mom a shower and washed and styled her hair, so they were both feeling cheerful about that.

Yesterday I swam, and today I walked. I'm knitting my first-ever baby blanket, a rush job for a shower a week from Saturday, for a young woman whose first two pregnancies ended in miscarriage and stillbirth . . . so the blanket's also a prayer shawl, woven with fervent requests for this pregnancy to end with a live, healthy birth.

This week is Spring Break, but I'm exhausted and strung out, with that scratchy feeling in my throat that comes from crying too much. Helluva way to spend a vacation.

Maybe Dad will have bounced back tomorrow.

Today's exactly five months since he moved out here. I'm grieving for everything I hoped to do with him that I haven't gotten to do. My church friend at the nursing home that that they could arrange to drive him out to Pyramid Lake in a wheelchair van, but at this point, I'm not sure he'll even be able to tolerate or enjoy that.

At this point, I'm just hoping that sometime before he dies, he'll know who I am again.


  1. Oh Susan, you have been through it all, and nothing wounds like one you love so not recognizing you. Know this -- sometimes, people actually do better on hospice -- the fact that the focus shifts from trying to regain function to doing as much as possible to improve quality of life and manage symptoms often leads to people really feeling better and being more present for the time they have left -- it's a kind of swimming with the current rather than fighting your way upstream.

    The mind is an amazing an mysterious thing -- your description of some of the things your dad was doing makes me think that he too, on a much deeper level is processing where he is and what is happening with his body and his spirit. Even if he doesn't recognize you in his words, believe that there are other levels, and other kinds of recognition.

    Be kind to yourself. Feel the blessing of those who care, both those near to you and those of us who are just looking through this funny window.

    Prayers continue for your whole family

  2. Susan, I'm so sorry. This has got to be one of the hardest times you've ever gone through. Please know that you and your Dad are always in my prayers and heart. I'll add clear headedness for Alan.

    That baby blanket sounds like a very loving gift. I wore the shawl you gave me to church last Sunday and got complimented on it. Many thanks.


  3. Your dad knows you're there, even when he can't articulate it. And he Knows, in the bigger sense, the other side sense, and you'll always know, in years to come, that you were there for him. That counts for a lot in the healing process, believe me. Some days, that's all I had to hang on to.

    Sending you all (including kitties) good healthy vibes, and praying for you too.

  4. Oh, Susan, so much illness and sadness... I'm so sorry. Prayers of course continuing. It must be so baffling to have different folks at the SNF assessing your Dad rather differently. And just so sad to see him like this. I hope he does have some better days and I'm glad you're knitting and swimming and walking. When you want to be with your Dad and he is sleepy, knitting is wonderful for the bedside. Also playing music he likes, etc.

  5. You don't know me, but I am praying for you right now. The last time I saw my mother, she called me 'Mama', and I realized that even if she was not seeing me as her daughter, she knew I was someone who loved her. And your dad knows that you are there because you love him, even if he doesn't know your name.

  6. You may not believe this now, but hospice really does take the pressure off and gives priority to good quality of life, instead of "good" medicine, which frequently has nothing to do with quality of life.

    Susan, you know the Lord calls us when He calls us.

    My guess is that your dad is in that separating from one life and heading into another stage. There can be a lot of beauty in this, if you look for it.

    Nobody knows more than I how hard it is to lose a parent... but it's harder on them when you hold on too hard and they're ready to go.

    If you love your dad, tell him that every time you see him. Stroke his hair and his cheek. Talk about memorable moments from your childhood with him. Sing him his favorite songs. And send him into the arms of the Lord who'll welcome him with open arms, because a man that good can't end up anywhere else, believer or not.

    No one doubts that you love him, least of all your dad.

    I'm holding you up in my prayers, my friend.

  7. Many wise words already may be that his heart kept him going to get him to you and Gary in Nevada, so you could be with him in the last months as his body's energy is slowly fading out. I think our bodies and spirits have wisdom that is not accessible to us with our thinking minds. Hospice is very good for ALL of those who are involved with the person who is dying, not just the patient.
    A word of guidance - hard as it may be, get recommendations from folks you trust (not just staff at the nursing home) about WHICH hospice program to choose - there are nonprofit and profit ones, quality and staffing varies, etc. Hospice is a Medicare benefit, so an MD or nurse practitioner has to actually write the order. With luck and a resourceful hospice, that trip to the lake in a WC van might happen. In my area, there is a well established and endowed non profit hospice that is able to arrange special items more easily and is much more responsive with volunteers, etc. than any of the for profit or VNA affiliated hospices...but it varies all over the country....

  8. Lots of wise words here. Definitely echo miss mouse re: get recommendations, especially from those who have personal (and recent) experience with them. Not all hospices are created equal. I know you already talked to someone from hospice, but it doesn't mean you can't go with someone else. And it the prospect of vetting yet another health system feels overwhelming, and you decide to go with hospice, know that you can always change if you need to.


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