The Decider

Posted on June 12, 2016 by

My mother has Alzheimer’s, diabetes, and as of three weeks ago, a broken hip. Shortly after my father died (coming up on three years ago), she made me her legal decision-maker in all things financial and medical. Taking care of mom’s finances turned out to be the easy part. Making medical decisions is decidedly more complicated.

Mom’s decline has sped up over the past six months, with repeat infections (urinary tract and MRSA), as well as a more pronounced diminishing of cognition. She’s fallen several times, which resulted in numerous trips to the emergency room. Sometimes she was admitted for IV antibiotics. Sometimes she was sent to a rehab hospital for physical therapy before returning to her assisted living (AL). With every hospital visit the dementia progressed. She became more confused. She began speaking less. She could no longer answer the phone when I called. Every time she was sent to the hospital with a new emergency, she returned to AL with a new, and lower, “baseline.” She was always worse in the hospital and rehab facilities, and would regain some cognition once she returned to AL and familiar surroundings. And her damn cat. Because of the toll the hospital visits were taking on mom, I began to question whether they were strictly necessary, or whether they were more of a CYA for the AL. On the day before mom’s 80th birthday, I refused to allow her to be taken to the emergency room when she appeared to be fine after a fall. (Had she gone, she likely would have missed her party.) My sister did not agree with that decision. Luckily, it turned out to be the right one, and mom was fine.

I’ve thought a lot about what it means to be a substitute decision-maker. In the beginning, I thought it just meant to make sure the doctors and nurses take good care of mom. And maybe, somewhere down the road, to not allow mom’s life to be lengthened by feeding tubes, CPR, or other “extreme” measures. But over time, I’ve learned that in between those two goals, there are a lot of nuances when it comes to treating a loved one with Alzheimer’s. No feeding tubes. No ventilators. No CPR. That much is clear. But what about pneumonia or flu vaccines? Hospital visits for infection? IV antibiotics? Replacement of a pacemaker battery? Surgery to repair a fractured hip?

I did not have to make the decision about whether my mother should undergo surgery to repair her hip fracture. The fracture was nondisplaced and not causing mom any discernible pain, so the doctor said surgery was not warranted. I’m unsure how much of his decision was related to mom’s diminished mental status, and how much was due to the nondisplacement of the break. Mom is now back at her AL on hospice care. She’s also on bedrest for six weeks to allow the fracture to heal. The orthopedic doctor said he wanted to see her in his office in two weeks for x-rays. I asked the physician’s assistant if we could do mobile x-rays since office visits are difficult for mom. He insisted mom needs to be seen by the doctor. My sister also is pressing for mom to be seen by the doctor. I’m hesitant. Since mom is non-weight-bearing due to the fracture, she’d have to be transported to the doctor’s office by EMS. Since mom is not talking, I don’t anticipate that a physical exam would be of much value. She can’t tell the doctor anything. He may get a barely discernible nod or shake of the head, but how are we to know she’s accurately answering the question being posed to her? And then there’s the stress of the doctor’s visit. She’s hardly communicative at this point; how much would a visit to the doctor set her back?

I talked it over with the hospice nurse. She suggested I look at it in terms of cost to mom, versus payoff. The stress of the transport and visit would be great. The doctor likely would not get much information of value via an examination. The x-rays can be done by a mobile technician at mom’s AL apartment. And then we took it a step further: if the doctor finds the fracture is not healing, would we opt for surgery? I would not. So rather than transporting mom to the doctor, we’ll get mobile x-rays in a few weeks and send them to the doctor. Hopefully the doctor will tell us mom can begin to bear weight on her hip and she can move from the bed to the wheelchair. And once in the wheelchair, we can push her outside to sit in the garden and watch the birds.

My sister isn’t speaking to me. I’m not sure if it’s because I haven’t made arrangements for mom to see the orthopedic doctor, or because I gave her hell for taking away the strawberry shortcake I brought mom last weekend after I had gone. (The caregiver tattled on her.)

“If you take away her favorite pleasures, what’s the point of keeping her alive? Then you’re keeping her alive for you. Not her.”

For now, my sister’s silence is making things easier. I feel more clear-headed. I’m attempting to make decisions based on what my mother would want. Not based on what my sister wants. Or based on my pushing back against my sister in anger. I try to put myself in my mother’s place and imagine what she would want for herself at this point in her life. I think back to when my father died, when my mother said she didn’t want to go on living without him. I think about how she wanted to do less and less for herself, and told me more than once she’s taken care of everyone else her whole life; now, she wanted to be taken care of. I think about my mom’s increasing reluctance to engage in physical therapy. (She’s been labeled “non-cooperative” more than once.) And about the times she’s told me she doesn’t care if she can use her walker; she’s fine being confined to the wheelchair. She’s likes being fed by the caregiver, instead of struggling with the utensils. And she wouldn’t mind if she died of eating too much chocolate cream pie. (Yesterday I brought her coconut cream pie and an empty Greek yogurt container in which to hide the leftovers so my sister wouldn’t take it away from her.)

Yesterday for my visit, the caregiver had dressed mom in real clothes for the first time since she got home from the hospital two weeks ago. The caregiver said mom seemed pleased to be out of the nightclothes. Mom was wearing lipstick, her glasses, and her watch. Her hair was fixed and the caregiver had painted her fingers and toes. Mom talked little. But she said “hi” when I came in. She nodded in response to a few of my questions. When I gave her kisses, she smiled. She petted the cat when I put him next to her on the bed. I brought mom flowers, which I arranged in a vase and set on a bookshelf next to the tv. When I turned my back to the flowers and faced mom, she blurted,

“Watch that cat!”

I turned around, and sure enough, her cat was eying the flowers, his tail swishing back and forth. It was mom’s only full sentence of the day. I love that damn cat.

Being the decider isn’t easy. But I think I know my mom well enough to know she wouldn’t want us to attempt to extend her life by any means, let alone by any means possible. And so I’ll keep the focus on pampering her and keeping her comfortable. And making sure she gets lots of her favorite simple pleasures: pie, the damn cat, and kisses. I may end up completely estranged from my sister in the end. A risk I’m willing to take. Because as the decider, my responsibility isn’t to do what my sister wants for our mother, or even to do what’s best for our mother by some medical standard. It’s to do what our mother would want for herself.

Posted in Alzheimer's, Assisted Living, Dementia, Elderly Parents, Feeding Tube | Tagged , , , , , , , , , , , , , , , , , , , , | 236 Comments

Mom and Her (Damn) Cat

Posted on May 30, 2016 by

Last Sunday, May 22, mom fell again. This time, despite my attempts to avoid it, she was hospitalized. They ran the usual battery of tests. Not surprisingly, mom had another urinary tract infection. What was surprising is that it occurred less than a week after she finished the antibiotic for the last UTI. And then we got the big news: mom had fractured her hip and jaw. It’s quite possible this happened in the last fall, but they missed it. In fact, the x-ray report said as much.

When she fell last time and the nurse thought she may have fractured her hip, I pondered then what we would do if mom was faced with having surgery. Given the progression of her dementia, I didn’t think she’d do well with surgery, anesthesia, or rehab. Given her co-morbidities (dementia, diabetes, and deep vein thrombosis), I wondered whether she’d be a candidate for surgery. The last time she fell, we didn’t have to make that decision. As it turns out, we wouldn’t have to make that decision this time, either.

Mom’s hip fracture was non-displaced so the orthopedic doctor said surgery was not indicated at this time. He said he’d put her on partial toe-touch weight-bearing (TTWB) for six weeks and then see her in his office for repeat x-rays and examination. I explained to the ortho doctor’s physicians’ assistant (PA) that we could not explain to mom what TTWB meant or how to do it. They switched her to non-weight-bearing for six weeks. I then asked if we could do a mobile x-ray rather than having her come in. The PA insisted he needed to see her. As for the fractured mandible, it was only minimally displaced and did not seem to be bothering mom. So no surgery or treatment was indicated for it, either.

The first couple of days after mom was admitted, she spoke little. I stayed in Austin, but kept in close contact by phone. The nurses would hold the phone up to mom’s ear, and I would talk to her. Once or twice she would answer “yes” or “no.” By day three or four, the nurses and my sister were reporting that mom wasn’t talking at all. But she was eating, always a hopeful sign.

On Tuesday, my sister informed me that she would be leaving Friday to go to Galveston for the Memorial Weekend.

After discussions with the nursing staff at her assisted living (AL), as well as the PA for mom’s geriatric physician, we decided it was time for mom to be evaluated by hospice. With the hip fracture and mom becoming increasingly non-verbal, the consensus was mom would almost certainly be accepted. I finally had the opening I’d been waiting for to have the hospice discussion with my sister. After much texting and a few calls, my sister agreed with the hospice evaluation.

Mom’s AL worked with several different hospice facilities. The nurse they liked the best said she didn’t have the time to give my mom the attention she needed with her current case load. I then selected a hospice provider that had been doing mom’s home health, thinking the transition would be easier that way. The evaluating nurse went to the hospital, looked at mom’s chart, talked to mom, and called me after the visit.

“Your mom is ineligible for hospice. She is not terminal.”

Despite the fact that the hospital nurses and my sister said mom was non-verbal, this nurse insisted she’d had a conversation with my mother. Rather than talking with her primary doctor who’d been seeing her for the past two years and talking with the nursing staff at AL, where she’d been living for the past three years, she made the decision based only on mom’s hospital chart. So, mom was deemed not a candidate for hospice at this time. A decision that surprised her primary doctor, who’d written the orders for the evaluation, as well as the nurses at her AL and the nurses at the hospital where she currently was admitted.

The hospital wanted her out as there was nothing more that needed doing. The AL couldn’t take her back due to the fractures and her inability to transfer. The hospital, I am certain in an attempt to buy us some time, said she needed five more days of IV antibiotics, and so would write orders to send her to skilled nursing. If mom did not improve within those five days, they suggested we get a second hospice evaluation. That was the plan as of Thursday. Meanwhile, I’d made several calls to the AL nursing staff, as well as mom’s primary care PA. The PA said she was going to re-review mom’s chart with hospice-care criteria in mind. The AL nurse said she was going to call a different hospice with whom they have worked, and discuss mom with them.

Friday morning I got a call from another hospice service. They talked with me about mom and her history, and said they’d like to meet with us. I had planned to drive to Houston Friday afternoon, but another round of severe storms was rolling through, so I delayed my trip until Saturday morning. I planned to meet with the hospice representative at noon in mom’s hospital room.

Since mom’s house was now empty in the wake of the estate sale, I packed my car with things I’d need to stay the weekend. I bought an air mattress, a coffee maker, and a soft furry bunny at Target. I packed towels and sheets and coffee. I filled a cooler with Greek yogurt and blueberries. I arranged for the pet sitter to take care of the kitties (now, four) and give Sadie her subcutaneous fluids. Saturday morning, I headed to Houston, unsure of what lie ahead.

I arrived at the hospital thirty minutes before the scheduled meeting. Mom was asleep. She didn’t awaken when I greeted her, or when I kissed her, or when I stroked her cheek. The nurse told me mom had eaten about twenty percent of her breakfast, and they’d bring lunch soon and I could try again. I gave mom her bunny, “a bunny for my honey bunny,” I told her. She didn’t awaken until the caregivers came in to change her. She seemed to register my presence, but the bunny made no impression. Now that she was awake, when I gave her kisses and stroked her cheek, she smiled. Her skin was so soft. Her smile beautific.

The hospice representative arrived on schedule and we sat in the window seat of mom’s hospital room and talked about their services and whether mom qualified. The representative thought she did but she would call her nurse to be certain, and if there was any question, the nurse would come and meet with mom before making the decision. She too seemed perplexed that mom was deemed to not qualify by the prior hospice provider. The hospice representative left the room to make calls and review mom’s chart. They brought mom lunch and I fed her. She had a few bites of mashed potatoes, and a few bites of turkey. I mashed up the turkey with a fork to make it easier to chew, imagining I was the mama bird and she was the baby bird. I opted not to go full-on mama bird, using a fork to mash it rather than pre-chewing it for her. Mom also ate some fruit, the grapes being the easiest to chew.

Mid-fruit-cup, the hospice representative returned and told me mom qualified and they’d accepted her. I filled out the paperwork. I filled out the out-of-hospital DNR (do not resuscitate). Because hospice had accepted mom, her AL would take her back. She wouldn’t have to go to skilled nursing and undergo yet another disorienting move. I updated my sister by text. I got a one-word response: “OK.” Within thirty minutes of the hospice representative leaving, the EMTs showed up with their gurney to transport mom back to her AL apartment and her cat. By early Saturday afternoon she was settled back into familiar surroundings, with familiar caregivers, the cat standing guard.

Mom seemed pleased to be back. She smiled more. She followed me around the room with her eyes. She stared at me and smiled. I brought the cat to her bed and helped her stroke him. She seemed more interested in looking at me than the cat. I took that as a sign that I am indeed her favorite child, even over the cat. The highlight of the afternoon was giving mom kisses and stroking her cheek, and watching her smile and her eyes light up as I did so.

Late in the afternoon, the hospice nurse came by and we went through the initial plan of care. More papers to sign. More information to absorb. The nurse would come by one to two times a week to check her vitals and give her a full examination. An aide would come by three times a week to bathe mom, wash her hair, take care of her nails, put lotion on her, change her sheets (once a week minimum), and massage her. We were assigned a social worker and a chaplain. Hospice ordered a better bed for mom with an air mattress, a bedside table, and an oxygen machine, should that become necessary. All of those items arrived within hours. The EMTs came back to move her from her old bed to her new bed.

Despite all hospice does, and despite the excellent care mom gets at AL, she needed more care than they would be giving. While Medicare pays 100 percent of hospice, the benefit does not include continuous care. Nor does the AL. I would need to hire an aide at mom’s cost to watch over her and assist in her care. The hospice social worker provided referrals and I managed to get care in place, despite it being Memorial Weekend. I made sure they knew about the cat, and that the aide would be expected to take over cat care.

Everything was done. Mom was sleeping. I’d decided to stay in mom’s AL apartment that night, rather than going to her empty house. I went out to the car and got my bags and the coffee maker. I set up the new coffee maker and made a pot. I ate some yogurt and blueberries. I brushed the cat, who was starved for attention having been alone for a week. We settled in on the love seat to watch a Harry Potter marathon on television.

Mom slept well and snored like a lumberjack for most of the night. The caregivers came in every two hours to check on her and change her if she was wet. I slept minutes at a time. Mostly I was awake, watching Harry and his friends defeat He Who Must Not Be Named.

In the morning, my sister began accosting me with text messages, second-guessing everything I’d done.

“Wouldn’t mom be better off at a nursing home where she can get twenty-four hour care?”

“I am not sending mom to a nursing home,” I wrote back. “She will do better in familiar surroundings with her cat.”

Then she called me. She put me on speaker. Her daughter and her husband were in the room. Suddenly I was being ganged up on by my sister’s family. And I was a force of one; no daughter or husband to meet them in numbers.

“Why didn’t grandma go to the nursing home for antibiotics?” my niece demanded. “The plan was one thing, and then suddenly we’re being told it’s entirely different. We all have a stake in this. We all care about grandma.”

“Stop yelling at me.”

Which is as far as I let my temper go. What I wanted to say was, “Fuck every one of you. And if you were so fucking concerned, you’d be here helping me make these plans, instead of at the beach for Memorial Weekend.” Instead, I patiently explained that mom was getting the care she needs, hospice had a plan of care in place, and that, coupled with the private aide and AL caregivers, would be a much higher level of care than she would get at the nursing home. I reminded them of the care my father got in the nursing home, and how heartbreaking that whole experience was. I told them mom would be better off in familiar surroundings with her cat.

“I don’t care about the damn cat,” my sister said. “I want her to get the level of care she needs.”

“She is getting the level of care she needs,” I said. “I was here all night. She slept. They checked on her every two hours. They changed her. The private aide will be here this afternoon. I’ll meet with her and give her instructions. She will stay until 7:00. Starting tomorrow, we will have a private aide from 7:00 a.m. to 7:00 p.m.”

My niece jumped in: “How can she be left alone? What if she decides to try to walk again and she falls again? That would be a disaster.”

“If you saw her you would not be worried about that. She’s bedridden. She’s not going to try to walk. She’s too weak. She can’t even feed herself. She’s not talking. She’s sleeping all day and all night except when we wake her to feed her or change her. I approved bed rails so she can’t fall out of bed. If she starts moving, they’ll lower the bed and put mats on the floor beside the bed.”

My sister’s turn: “If she was at the nursing home, we wouldn’t have to pay for her apartment or the private caregiver. This is expensive.”

“Mom has money,” I told her. “She can afford to do this for quite a while. She needs familiar surroundings and faces. She needs familiar caregivers. When the night aides came in last night, she smiled at them. They talked to her. You could tell she knew them. And you could tell they care about her.”

“This is a lot of money.”

Finally, I heard my brother-in-law say, “It’s not about money.”

“Well, what if she runs out of money?” my sister said.

“She can afford this for a while,” I said. “I’ll run some projections next week when I’m back at the office.”

“Well, you should go out and look at nursing homes while you’re there and find one to move her to when the time comes.”

“No, I’m not going to do that. I have enough to do right now. Not to mention, I want to sit with mom. I want to spend time with her.”

I didn’t bother to tell her Medicare would pay for only 100 days of skilled nursing, and after that we would be on self-pay and nursing home costs are more expensive than AL costs. And with the shitty care at nursing homes, we’d likely want to pay for a private aide, just like I’d set up at AL. My sister continued to bombard me with orders, including making arrangements to move mom into a smaller, less expensive AL apartment since we now had a hospital bed in the television room. She insisted we no longer need “all that space.” I told her I’d consider that at a later time. Right now, I was focused on getting mom settled in and comfortable in the home she’s lived in for the past three years.

Meanwhile, my mother was sleeping in the next room, blissfully unaware of what an asshole my sister is. It has become more evident with each passing day why my mom made me her decision-maker. And by God, I am going to make the decisions no matter how many members of her family gang up on me. Luckily, my niece and brother-in-law both seemed to come around by the end of the call. They seemed to understand that familiarity of surroundings and comfort are key, and that even though my sister doesn’t give a damn about the cat, my mother does. Mom made herself clear on Mother’s Day that she wants to be with her cat and she wants to eat pie. I had now reunited mom with her cat. After the private aide arrived, I went to the bakery and got mom a big slice of chocolate cream pie.

And now, having made it through the transition to this new phase, we settle in and wait for what’s next. The hospice certification means they believe mom will not be with us for more than six months. My sense is, they are correct. Especially if mom continues to be non-verbal and if she is unable to begin ambulating after her six weeks of healing of the hip fracture. I don’t think she will walk again. I don’t think she’ll be with us long enough to run out of money. If she does, I’ll pay for her care. I’ll pay to keep her home at assisted living with her damn cat.

Mom petting her damn cat

Mom petting her damn cat

 

 

 

Posted in Alzheimer's, Dementia, Elder Care, Elderly Parents, Long Distance Caregiving | Tagged , , , , , , , , , , , , , , , , , | 48 Comments

Death by Chocolate

Posted on May 11, 2016 by

I drove to Houston Mother’s Day weekend for the second (and last) weekend of the estate sale. Mom’s been ill with another infection; one that has hit her especially hard. The new antibiotic, injectable Rocephin, was started on Friday before I arrived at mom’s assisted living. When I got there, she was reclined in her lift chair watching a Modern Family marathon. Well, not watching exactly, since she wasn’t entirely coherent. The sitter I had hired was with her, playing with the cat.

Mom smiled when I arrived but talked little. She wasn’t up for more than one-word responses. She wasn’t strong enough to go down to dinner, so they brought a plate of fresh fruit to her room. I fed her the first few bites, and when I told her she could eat it with her fingers, she began feeding herself. I watched tv with her and played with kitty until it was time for bed. When I spoke to her, she stared blankly at me much of the time.

It took three caregivers and the sitter to transfer mom from her recliner to the bed Friday night. She was so weak, she couldn’t help them much. Once she was in bed, I pulled up a chair and sat with her, holding her hand. I put kitty in the chair so she could reach him for petting. She lay there with her eyes closed, stroking the cat. She looked so weak and vulnerable. When my eyes filled with tears, I got up and turned away so she wouldn’t see me. I left after she fell asleep.

I spent the night in mom’s house. (At some point over the past three and a half years, it shifted from being my parent’s house, to being mom’s house.) The house is in complete disarray, with everything out of the closets, cupboards, drawers, and cabinets for the estate sale. We sold a fair amount of family treasures (along with a good amount of crap) two weeks prior, but it seemed to have barely made a dent. I slept in a twin bed in my brother’s old room, feeling lonely and wishing I had the company of Lucy, like I had the prior visit.

After a restless night, I got up and made a pot of coffee, thankful we hadn’t yet sold the coffee maker. I’d stashed my mug in the refrigerator the weekend before so it wouldn’t be sold. At 7:45, the garage salers began ringing the doorbell, like vultures descending upon a carcass. I didn’t let them in until my sister arrived five minutes later. My sister and I both were in a surly mood, and not having nearly as much fun as the prior sale weekend. We seemed to be carrying more mementos out to our cars than we were selling. Knowing this was the last weekend, things felt a bit more final. Letting go of family treasures grew more difficult.

In the afternoon, one of the garage salers told us of an estate sale in a nearby neighborhood being run by an estate sale company. My brother-in-law went and fetched the owner, who came over to talk with us about taking over the sale. We quickly reached an agreement with him, and closed up shop early. In two weeks, the estate sale company will run the sale again. This time, in a more methodical fashion, with more comprehensive ads, prices on everything, and a group of “professionals” on two sale days. Once the sale is over, they’ll auction what remains, and donate what can’t be sold. The house will then be empty and ready for the next step: sale of the real property.

After the estate sale owner left, my sister and I went through the house room by room once more, adding a few more treasures to our piles. A few, meaning as much as I could fit in my car and still see through my rear-view mirror. Odd how suddenly we felt frantic. With each item carried out to my car, I vowed to clear out my closets by year-end to alleviate the feeling of suffocation that overcame me.

When I visited my mom Saturday evening, she seemed a bit perkier. The second antibiotic had begun to work. I was flooded with relief. I had brought mom a big bouquet of yellow flowers, happy flowers, and explained to her that the next day was Mother’s Day, and we were going to have a picnic. I stayed with her until the caregivers helped her to bed. She was stronger than the night before, but still very weak.

On Sunday, I awoke early and went for a seven-mile walk with a friend. The mosquitoes were fierce due to the flooding weeks before. Afterward, I took what I expected would be my last shower ever in the house and packed up my belongings. I walked around the house that for nearly forty years had been “home”: room by room, I told it goodbye.

I arrived at my mother’s assisted living shortly before lunch. My sister, brother-in-law, and niece both were there visiting mom. They were preparing to leave as my brother-in-law had gotten word that his brother was dying and wasn’t expected to make it through the day. (As it turns out, he would not get there in time to say goodbye.) As they left, my niece and brother-in-law lingered over my mother, giving her kisses and telling her she is loved. My sister, in contrast, was already out the door.

“Why doesn’t Dierdre kiss her mother goodbye? What’s her deal?” I asked them.

“She’s not affectionate,” my niece said. “You know that.”

“She’s always been that way,” my brother-in-law said.

“No wonder she likes me better,” I blurted.

After they left, I pushed mom out to the courtyard where we could watch the birds. It was a beautiful day. Mom had improved even more, having been on the right antibiotic for more than forty-eight hours. I ordered lunch from a nearby cafe, and sat holding her hand and talking with her until it was time to pick it up. As we watched a mourning dove chase the others away from the feeder, I asked her how she was feeling; if she was feeling better.

“I’m just feeling content,” she said.

Content. What an exquisite word.

Mom told me it was time for me to pick up our lunch, that twenty minutes had passed. I looked at the time, and sure enough, she was right. I picked up her omelet and my salad, and added a giant piece of chocolate cream pie to the order. The waiter gave me a white carnation for mom. When I got back to the courtyard, a gentleman in a motorized wheelchair had come out to enjoy some fresh air. I greeted him, and mom and I tucked into our lunches. Eventually, I made my way toward the topic I’d wanted to broach with her.

“Mom, Dierdre wants you to do rehab at a rehab hospital. Do you want to do rehab at a hospital?”

“Not today. Maybe later I’ll try it.”

“But do you want to leave and stay somewhere else to do it? Stay overnight somewhere else?”

“No.”

“How about if we do rehab, physical therapy here, in your room? You can sleep in your bed and you won’t have to leave your cat?”

“I would like to try that. Maybe tomorrow.”

“But you don’t want to leave here and go somewhere else and stay overnight to do it?”

“No, I want to sleep here.”

“OK. I told Dierdre you didn’t want to go to a rehab hospital. She can be kind of a bully,” I joked. “But I can take it. I can stand up to her for you. I will tell her you don’t want to go to rehab. That you want to do therapy here. At some point, it just gets to be too much work.”

chocolate cream pieAfter she finished her omelette, I opened the container with the huge slice of chocolate cream pie. She broke into a big smile. I cleaned off her fork and handed it to her.

“OK, we’re not going to eat the whole thing. We’ll save some of it for later,” I told her.

“I might be able to eat the whole thing,” she said.

“But what if it does crazy things to your blood sugar? What if it makes you go into a coma?”

“I’m sitting down so it will be OK,” she said. And she laughed.

“But mom, you don’t want to die by chocolate, do you?”

“That would be OK,” she said.

“I suppose there are worse ways to go, than death by chocolate,” I said.

We ate in silence, savoring our pie. The man in the wheelchair then told us he was going for his “walk.”

“It’s a nice day for a stroll,” I told him.

“You’re a good daughter,” he replied.

I thanked him, surprised.

“You are a good daughter,” he repeated, and he motored away for his walk.

Posted in Alzheimer's, Dementia, Elderly Parents | Tagged , , , , , , , , , , , , , , , | 34 Comments

To treat or not to treat

Posted on May 6, 2016 by
Taken on my last trip to Galveston with mom: Galveston Island Pelicans

Taken on my last trip to Galveston with mom: Galveston Island Pelicans

On Monday I got the dreaded call from assisted living (AL): mom fell again. She had a big bump on the back of her head. The AL nurse feared her hip was broken. So this time, unlike the last time, I agreed to allow her to be taken to the ER to be checked out.

Jenny, long-time friend and employee of my father’s business, agreed to hold mom’s hand at the ER. Meanwhile, I googled things like:

  • elderly dementia candidate for hip surgery
  • prognosis elderly dementia hip surgery
  • prognosis elderly broken hip forgo surgery

Fortunately, the x-rays and CT scans of her head, back, and hip all came back negative. But, not surprisingly, Mom has another UTI. Which is why she fell. They seem to be coming faster, now. She had the last one in March, just before her 80th birthday. Which means she’s gone just sixty days this time before another took hold. Each time another infection pops up, I wonder if this one is the one: Is this the one that will overcome her failing immune system and resist all antibiotics?

The emergency room doctor prescribed Bactrim and sent mom back to AL. Well, actually he wanted to send her to a rehab hospital, which I vetoed. Instead, I asked that therapy be ordered via home health. I don’t think my sister was happy with that plan. She’s more the treat-the-crap-out-of-her-irrespective-of-the-mental-toll mentality. I’m done with that. A tension is emerging between us.

So mom is back at AL, and the Bactrim isn’t working. Mom is progressively getting worse. She’s weak. Confused. She can’t walk. She can’t feed herself. The AL caregivers are overwhelmed. I hired a helper from a home health company. The culture should have been back yesterday from mom’s trip to the ER. We were anxious to get the results to know what antibiotic to switch her to. The sooner we get the right antibiotic in her, the hope is, she’ll start feeling better and the permanent effects will be less. As it turns out, the ER doctor did not order a urine culture. All of us (the home health nurse, the AL nurse, the physician’s assistant, and me) exclaimed in unison:

What the fuck?

OK, maybe I was the only one who used those exact words, but the sentiment was the same with the others.

When we learned the ER doctor failed to order a culture, home health did so yesterday. And so we wait another seventy-two hours to learn which bacteria has invaded mom’s urinary tract this time, and which antibiotic is indicated. Since the oral Bactrim the ER doctor prescribed clearly isn’t helping, the physician’s assistant ordered injectable Rocephin, which did the trick in March, and one other broad-spectrum antibiotic, while we await the results.

The physician’s assistant called me last night with an update. She sounded down. Discouraged. She told me the infection has hit mom hard. Much harder than past UTIs have. She brought up hospice. I asked her if it was time. She said we should wait for the culture and find out which antibiotic is indicated. But it could be mom now has an antibiotic-resistant UTI that will require a hospital stay, perhaps weeks of antibiotic therapy, and then a several-week stay at a rehab hospital. So the question may become, do we put mom through all that, or call hospice and let nature take its course?

I know what my sister would do. Treat treat treat. But what is best for mom? Do we keep putting mom through hospital stays and follow-up stints at rehab hospitals? Do we keep taking her away from the comfort and familiarity of her AL apartment? Not to mention away from her cat, which is her only consistent pleasure. When do you say, stop? Enough?

We’re in a gray area. Dementia. Diabetes. And chronic infections. All slowly and inexorably pushing mom toward the end of her life. When do you stop treating the infections in an attempt to keep her here a bit longer? When do you stop putting her through the stress of hospitalizations? And even if the treatment is successful, to what end? A few more months of doing OK, until the next infection hits? What is best for mom? Hospitalize her and pump her full of antibiotics? Or call hospice?

I’ll leave for Houston a little later today. I’ll spend time with mom this afternoon, and throughout the weekend. Maybe I’ll find an opportunity, a moment of clarity, to ask mom what she wants. I wish she could tell me. Three years ago, after my dad died, mom  said she didn’t want to go on living without him. My sister got angry with her. I wonder if she’d get angry with mom if she told us she’s ready to die now.

 

 

Posted in Alzheimer's, Assisted Living, Dementia, Dying, Elderly Parents | Tagged , , , , , , , | 33 Comments

Orange Dude, and other odds and ends

Posted on April 30, 2016 by

My sister and I have spent the past several months clearing out mom and dad’s house to get it ready to put on the market. Forty years and three thousand square feet of memories, junk, and a few treasures.

My father was born in the late 1920s; my mother in the mid-’30s. My father was very handy and could build or fix anything. Which means you save everything. No telling when you might need it. My mother was born in the middle of the Great Depression. Which also means you save everything. No telling how you might re-purpose it.

The first couple of weekends of clearing I spent in one room. An upstairs bedroom filled with financial papers and other documents. Boxes stacked upon boxes half-way to the ceiling covered nearly every inch of the room. Bank statements and canceled checks dating back to the ’70s. Tax returns. Loan documents for houses and sailboats and cars; the loans paid off years or decades ago, the boats and cars, long since sold or traded. Bags filled with prescription drug receipts. Medical records. Utility bills. Labrador puppy AKC registrations. Kitty adoption certificates. School records, both for my parents, and their four children. Every greeting card ever received.

I plowed through the decades of records for days, putting them into the mountainous recycling or shredding piles. Occasionally, an old card or letter would catch my eye and I’d stop and read it, perhaps putting it into the sister-should-see-this-before-I-toss-it pile. I wondered fleetingly why I wasn’t feeling more sentimental. Why I didn’t feel the need to read all the cards and letters. Why I’d rather rush through the process and be done with it. I imagine some people might curl up with the boxes and bags of old greeting cards and letters and lovingly read each one. Instead, I felt an impatience. A resentment that they saved all this stuff, forcing us to sort through it. Forcing us to revisit my mother’s careful curation of our family history. Forcing us to do something she couldn’t bring herself to do.

“I’d rather die and leave you to deal with it,” she told me, shortly after dad died.

Eventually I finished with the “record room,” moving on to the rest of the house. Sorting through knick-knacks and dishes was an easier task. After multiple weekend trips back and forth to my mother’s home (five hours round-trip), what remained was a massive “sell” pile, scattered throughout the house. Last weekend, sell is what we did.

We’d advertised the sale for Friday and Saturday. In a stroke of bad luck, Houston was hit with terrible flooding early in the week, and my mother’s neighborhood was hit hard. Her home, and others on her street, were spared. By Friday, the water had receded and we decided to go forward with the advertised sale. My sister, being a garage sale expert and control freak, suggested we do the sale ourselves, instead of hiring an estate sale company. We did a bit of research on-line and priced the bigger pieces. Everything else, we staged as best we could with the idea of bartering on the fly.

Bartering turned out to be a lot of fun. Many of the garage-salers were Hispanic, so I got to spend the day practicing my Spanish. The Mexican men seemed to prefer negotiating with me over my sister. Because I did my best to speak Spanish with them. But also because I was more willing to negotiate. The highlight of my day was an old Mexican woman who wanted to buy a handful of stainless and wooden kitchen utensils.

“Tres dolares,” I told her.

A look of disappointment crossed her face, as she walked off to find her hija. Later I saw her in the living room without her spoons. I motioned to her, asking her in broken Spanish where her spoons were. She led me into the kitchen and pointed. I picked them up off the counter.

“Cuanto?” I asked her.

She opened her hand and showed me some coins.

“Si,” I said, handing her the spoons.

The abuela smiled broadly as she accepted the spoons in exchange for her handful of change. And then she kissed me on the cheek.

The second highlight of the day was when I sold a vintage Monopoly game to three little Mexican girls for a quarter. I threw in a puzzle for free. If they come back next weekend for round two of the sale, I’m liable to give them the whole closet full of old games and puzzles for un dolar.

Plaster Orange Dude--Family Heirloom

Plaster Orange Dude–Family Heirloom

Admittedly I brought home a few odds and ends throughout this process. Photographs, a vintage Henredon chest, china teacups, a turkey platter, an orange dude, an African carving, a carved cat with three mice, among other treasures. (Also, a live cat.) With each item added to my “keep” box, I promised myself I’d do a thorough decluttering at my place, once the house is sold.

I wish I knew her story.

African Lady–I wish I knew her story.

Inexplicably had to have this.

I inexplicably had to have this.

Next weekend we continue with Round Two of the sale. We’re also scheduled to meet with the realtor on Saturday to prepare for the listing. So far, I’ve been remarkably unemotional, more concerned about dealing with the task at hand than getting bogged down in nostalgia. Luckily, my sister is of a similar mind, which has allowed things to go more smoothly than I imagined was possible.

As for the little live cat, the name that stuck is Lucy. Little Lucy is quickly ingratiating herself with the resident Three Black Cats. She’s having much better luck than Sophie-the-former-stray, who still will not come downstairs after three years. In contrast, as I write this, Lucy is napping on the sofa to the right of me. Sadie is having a bath on the sofa to the left of me. Earlier, Sally and Lucy sniffed noses. Granted, Sally followed up with a hiss. She can’t have the young’un getting grand ideas.

Posted in Animal Rescue, Cats, Elderly Parents, Mid-Life | Tagged , , , , | 17 Comments

Ella and Her Cat

Posted on April 24, 2016 by

As you probably have heard on the news, there have been lots of storms across Texas. So last Sunday, April 17, I brought the little cat inside. Again.

Kitty 1

Look how she tucks her little paws in.

Kitty 2

I’ve missed having kittens around.

Kitty 3

I’d say she’s not concerned about much.

Kitty 4

That face.

Snuggled up against my leg

Snuggled up against my leg

Slippery slope, indeed.

But instead of simply cratering to the cuteness, I began actively looking for a home for her. I emailed her photos to all my cat-loving friends, as well as my pet sitter. I posted on Facebook. I circulated an email to the entire Austin branch of my office. And then, success! A Facebook friend who went to my high school wanted to add the little stray to her brood of four. She has a larger home than I, room for five cats, and I could tell from her posts on Facebook she’s an avid kitty lover. She promised kitty would be an indoor kitty, along with the rest of her cats. And there would be no declawing. But there was a bit of a hitch: she lives in Houston, so I’d have to transport little kitty to her.

Luckily, I had a meeting in Houston Thursday morning, so the plan was for me to drop her off before my meeting. I planned to stay at my mother’s house through Saturday to run the estate sale we’d planned for Friday and Saturday. With the severe flooding in Houston, things were touch and go whether the meet or the estate sale would take place.  The area where kitty’s new mama lives (and where my mother’s house is) got the worst of it. Video clips appeared on national news of my mother’s neighborhood: people being rescued by boat and paddling around in kayaks. But mom’s home was spared, as were a few others on her street. The prospective cat guardian’s house was spared as well, and by Thursday, the roads were passable enough for me to transport kitty, attend my downtown meeting afterward, and then head to my mom’s for last-minute sale preparations.

The drive wasn’t too bad. Kitty meowed about the first thirty minutes, and then settled in for a nap. She was so quiet that at one point, I checked to see if she’d had a heart attack. She was fine, but for the fact that I woke her, and the meowing began again. Kitty settled down quickly this time. And after two hours of driving in the rain, I pulled into the drive of a home in a pleasant neighborhood, feeling optimistic about kitty’s new home.

Kitty’s new mama answered the door and gave me a big hug. Instantly I was bowled over. By the dank and overwhelming smell of cigarette smoke. The foul smell permeated the room. I imagined it clinging to the drapes, the upholstery, seeping into the paint and the sheetrock. As we walked around to meet the resident cats I took in the scene. The house was filled with clutter. Ashtrays were overflowing with butts. The carpet was dirty and stained. Her resident cats looked well enough. And then she introduced me to her eldest, Rufus: “He’s got some goop in his eyes, but don’t worry. None of the others have it.” She showed me the litter box area: the corner of the laundry room with multiple covered boxes filled with heavily-scented litter. Little kitty was out of her carrier exploring. I asked to use her restroom.

Sitting on the pot, I pulled out my iPhone and typed a text to my best cat-loving friend:

“They smoke inside! I don’t think I can leave her. What should I do?”

When I finished peeing and she hadn’t texted me back, I sent a second message:

“I can’t do it. I’m not leaving her here.”

I came out of the restroom and faced the issue head-on.

“You smoke inside?”

“Yes,” she said. “I thought about telling you. I should have told you.”

“Yes, you should have told me,” I agreed.

“But my kitties are all fine.”

“How do you know?” I asked. “Little kitty lungs. I’m so sorry, but I can’t leave her.”

She said she was near quitting, a halfhearted plea I dismissed as I put kitty back into her carrier.

I drove to my mother’s house, where we’d been setting up for the estate sale that was to begin the next day. I got kitty settled in a bedroom with a bowl of water and cat toys we’d been planning to sell. I had no litter box. No food. No plan for what to do with her over the next two days during the sale.

I sent an email to the meeting leader and explained my predicament. That I wouldn’t be attending the meeting in person due to a failed kitty adoption moments ago. And then I dialed in. I was chided a bit on a conference call by a roomful of lawyers, as well as two judges, one federal and one state, in attendance.

“Who do we have on the phone?”

“Ella’s here,” I said.

“Oh, it’s Ella and her cat,” the meeting leader said.

Ella and her cat.

After the meeting ended, I ran out and bought a litter box, litter, and food. By Thursday night I was trying out names for her.

“I think you look like a Lucy, I told her. Or maybe Petunia.”

 

Posted in Animal Rescue, Cats | Tagged , | 37 Comments

Slippery Slope

Posted on April 11, 2016 by

I let the little stray cat in over the weekend to give the birds a break. 

   
    

   

Posted in Animal Rescue, Birds, Cats | Tagged , , , , | 31 Comments

Blossoming Blossoms

Posted on April 10, 2016 by

It’s springtime in Central Texas. My favorite time of year. Bluebonnets and 70-degree days. Last year, I was working too much, and missed most of it. This year, I’m taking advantage of a slow patch, and enjoying every bit of it.

I’ve been on the new antidepressant Brintellix for four months now. I haven’t had a single side effect, except maybe hot flashes. But it’s hard to attribute those to the antidepressant, seeing as I’m fifty-two. Dr. McEnroe started me on samples of this shiny new drug in November, in an attempt to help me out of the pit. It seems to have worked. I’ve actually caught myself, a couple of times over the past several weeks, thinking: “Holy shit; I’m feeling happy.” Not just amused or content. But actual, full-on happiness.

Source: Facebook.com/BizarroComics

Source: Facebook.com/BizarroComics

Now, at the four-month mark, Dr. McEnroe has cut me off on the samples and called in a prescription. After much research, the cheapest I could find for a 30-day supply of 20 mg Brintellix is $266. And that’s with a $30 coupon. On top of that, he’s got me on Deplin, a medical food that seems to enhance the effects of the antidepressant, at $30 a month. Add to that, the shrink’s $175 fee for a 30-minute visit, and we’re up to $475 a month. Luckily, Dr. McEnroe has begun to lengthen my leash and we’re now shifting to quarterly, instead of monthly, visits. All of this is out-of-pocket due to my high-deductible insurance plan, which is all my law firm has offered for the past few years. $266 a month ($296 when the coupon runs out at the end of the year), is obnoxious for one prescription. This is not a viable option long-term. I’m hoping the changes I’m making now that I feel better will render the drug unnecessary. But I do not want to be blind-sided by the depression again, so I’m in a bit of a pickle.

Speaking of pickles: pickles are low-carb, and so are very much a part of my new dietary regime. Here’s what happened. In February, when I started feeling a little peppier, I went and got a wellness exam. My first in three years. I had gained quite a bit of weight since my last visit, and my numbers were not good. My fasting blood glucose, at 113, was in a range deemed “pre-diabetic.” Seeing as my mother is diabetic, and knowing first-hand (second-hand?) what lie ahead, I immediately made drastic changes. It’s been two months since I gave up all sugar and starches, as well as most fruit. This includes anything made with flour or grains, beans, lentils, peas, potatoes, and pasta. Whole grain. Half grain. Multi-grain. It’s all out. What do I eat besides pickles, you might ask? Leafy greens, broccoli, asparagus, cauliflower, berries, nuts (mostly walnuts and almonds) and nut butters, eggs, whole-milk cheeses and Greek yogurt, heavy cream, butter, avocado, coconut milk, olive oil, coconut oil, grass-fed beef, chicken (with skin), fish, and pork, including bacon.

After two months of this way of eating, I’ve dropped 24 pounds. It’s probably closer to 20, seeing as my first weigh-in was at the doctor’s office fully clothed. Here’s the cool thing (in addition to the coolness of dropping 20 pounds): I feel fantastic. I have more energy than I have had in ages. I sleep well. My digestion is vastly improved since I stopped eating grains. I don’t crave carbohydrates or sugar. I’m not constantly hungry. I feel brighter. I feel happier. I feel zestful. Now, how much of this is due to the diet, and how much to the antidepressant, is the $500-a-month question. At some point, I’m going to stop taking the drugs and see if I can determine the answer. Hopefully I’ll find I can sustain these feelings of well-being on diet and exercise alone.

As for exercise, it’s been a brilliant spring here in Central Texas and I’ve taken to walking at lunch-time nearly daily. A work colleague and I started off at thirty minutes and a couple of miles, working our way up to over an hour and five miles in 9-weeks time. Here are a few photos of what we see during our lunch-time wanderings:

See the Texas Capitol peeking out at the top of the tree-line?

See the Texas Capitol peeking out at the top of the tree-line? That’s our start-point.

Red

Red

Pink

Pink

Blue

Blue

 

BigLawBoss also has been going through a bit of a transition. A few weeks ago, he told me he and his wife are divorcing and he was moving out of the house. An example of the new “gray divorce”: both of them are in their early 60s. I didn’t make an attempt to feign surprise. I did, however, find myself feeling happy for him, along with much compassion. In fact, the respect I’d lost for him while he was sneaking around is returning. He since has moved into a condo, along with a few pieces of furniture and his guitar. Kind of Steve Martinesque from The Jerk: “All I need is this lamp.” Since BigLawBoss moved out, he too seems a lot happier. Between the two of us, we’re like a whole new law office.

So that’s springtime in Central Texas in a nutshell: everything is blooming.

Posted in Antidepressants, Attorney, BigLaw, BigLawBoss, Brintellix, Deplin, Depression, Diet, Exercise & Fitness, Flowers, Health, Mid-Life, Nature, Prediabetes, walking | Tagged , , , , , , , , , , , , , , , , , , , | 25 Comments

About My Mother

Posted on March 13, 2016 by

145769-425x395-80th_bdayMy mother turned 80 last Saturday. In the weeks and days leading up to her birthday, I held my breath, hoping she would stay healthy enough to attend her birthday party. Each time I spoke with one of her caregivers in the weeks and days leading up to her birthday, I told them, “The goal is to keep her out of the hospital at least through her birthday.” She’d been doing better since her last hospital admission over Thanksgiving. A couple of weeks before her birthday, she and I had a forty-minute telephone conversation. The first real conversation we’d had in many months. A snippet:

“What day is tomorrow?” mom asked.

“Saturday,” I replied.

“You get to sleep in, then. Catch up on some rest.”

“A little,” I said. “At least until the cats start jumping on my head asking for breakfast.”

“Here’s what you do,” she said. “You put a can of food under your pillow, and then when they start bugging you, you pop it open, put it on the floor, and go back to sleep.”

Mom was feeling good enough on that call to problem solve, and be funny doing it.

Mom’s 80th birthday fell on a Saturday. I took off the Friday before the big day so I could make the dishes I was bringing to the party and be all set for the drive to Houston first thing in the morning. I wanted to get to my sister’s house early to help her get ready for the party. At at 8:30 Friday morning, as I was still lolling around in bed, the phone rang. A Houston number. Shit.

“Hello?”

“Hi, Ella. It’s Susan. Your mom’s okay.”

Susan is the head nurse at mom’s assisted living (AL). Whenever her calls begin with “Your mom’s okay,” my mom is not okay. She’s not at risk of imminent death. But she’s definitely not okay.

“She had a fall on the way down to breakfast. We found her on the floor by the elevator. She’s okay, but she bumped her head. She has a little scratch on her cheek. And she says her knee hurts. The paramedics are here.  I know tomorrow’s the big day, but we’re sending her to the emergency room to get her checked out.”

I’d recently had a long conversation with the physician’s assistant (PA) about mom’s frequent trips to the emergency room, and had asked if we could do anything to try to limit them. I asked about hospice. The PA didn’t think my mom would yet qualify for hospice, but she would ask the doctor to evaluate her if I wanted him to. I asked her if we could better manage her care without frequent trips to the ER, short of getting her on hospice care. The PA told me that AL erred on the side of sending people to the ER, and that I always had the right to refuse. The problem was that oftentimes, it’s hard for family members to make the call whether it’s medically necessary, particularly when family members aren’t there. She told me in the future, I could text her at any time, and she would help us determine what was best for my mother. We left it that we would hold off on the hospice evaluation for now, unless mom’s condition changes. And meanwhile, I would enlist her help if AL was contemplating another hospital visit.

If there’s one thing I’ve learned, sending my demented mother to the ER alone was not ideal, if it could be avoided. Invariably she would be admitted and subjected to all manner of diagnostic tests. Usually they’d determine she had a urinary tract infection (UTI), put her on an IV antibiotic, and send her back to AL days later. Each time she returned to AL after a hospital visit, it took her weeks to get back to “normal,” and often that normal was a step down from her previous cognitive function. The last time she went to the ER, in early December, they kept her for two nights “on observation” and a battery of tests, and then sent her back to AL with an oral antibiotic for yet another UTI.

I didn’t tell my sister right away I’d had the hospice conversation with the PA. I remember her losing it when my father was put on hospice care. It was as if she thought he was going to pull through until the moment they said he could be moved to hospice. So I knew if I mentioned hospice for our mother, she’d panic. She’d think the end was nigh. Even though the end might not be nigh for six months. And even then, it was difficult to predict. She still could be with us in six months, and be certified for another six months of hospice care. The goal was to stop sending my mother to the hospital every few weeks for another round of tests and antibiotics. To treat her for whatever infection she had at AL, and to stop running all the damn tests.

Eventually I told my sister about the hospice conversation. I needed to prepare her. I needed to plant the seed. To get her thinking about shifting my mother’s care from aggressive to palliative.

“She’s not anywhere near that point,” my sister protested.

“It’s not about mom being near imminent death. Hospice care for dementia patients isn’t like that. It’s not like with dad. And we learned a lot with dad. I would never put mom through what we put dad through. Brain surgery on an 83-year-old man in late-stage dementia? Even the surgeon was upset we’d done that to him.”

“Well if we’d caught it earlier,” she said, “dad would have been okay.”

My dad had hit his head three weeks before the surgery was done. They’d waited three weeks after the fall to admit him to the hospital. When they found out he had a subdural hematoma, they did emergency brain surgery, rather than calling hospice. We didn’t know any better, then. We know better, now.

“He was 83 with late-stage dementia. He would not have been okay. He spent most of the day sleeping. He couldn’t dress himself. He was incontinent. They removed his eyelid due to cancerous cells and he was wearing a bandage over his eye because the doctor couldn’t do the repair surgery in his condition. We were turning him into a Frankenstein. We were struggling with the idea of a feeding tube.”

“That was for mom,” my sister said.

“Yes, that was for mom. And luckily she did not do that to dad. She let him go. And we need to start thinking about what we’ll do if these issues come up with mom. If she falls and hits her head and they tell us she needs brain surgery, I’m not going to do that to her. She can’t walk. She often can’t carry on a conversation. She keeps getting infections.”

“She’s doing great, now. She’s not there yet,” my sister said.

“You’re right, she’s not there yet. But she will be. And I don’t want us to wait too long to get her on hospice care. I want her to have the benefit of the best care possible as soon as possible. I don’t want to put off getting that care for her because we can’t come to terms with losing her.”

“Okay. But she’s not there, yet.”

So here I was, the day before mom’s 80th birthday, a big party was planned, something my mother had looked forward to for months, and the paramedics had her on the gurney getting ready to send her to the ER and AL was seeking my permission.

“Can I talk to the paramedic?” I said.

She put the paramedic on the phone.

“How are her vitals?” I asked.

“Her vitals are fine.”

“Does she seem in distress? In pain?”

“Well, they said she was complaining of knee pain. But she seems okay. She’s talking. Smiling.”

“Is she bleeding?” I asked.

“No, no she’s not bleeding.”

“I don’t want to send her to the ER just as a CYA for the AL facility. Please send her back to her room and we will wait and see how she’s doing.”

And so that’s what they did. Following which, my sister and I had a text argument. My sister wanted them to run tests, do x-rays, make sure she was okay. I told her I was not putting mom through that unless it appeared necessary. I then contacted the PA who agreed we should “wait and see” and if mom appeared to be in pain, she could order mobile x-rays. She also advised they’d done a urine culture on Wednesday because mom seemed a little off, and we were waiting for the results to determine whether an antibiotic was necessary. She’d let me know as soon as the results were back.

Mom made it to her 80th birthday party. I picked her up on Saturday at AL, put a tiara on her head and wrapped a hot pink feather boa around her neck, and wheeled her out to the car in all her birthday-girl splendor. Mom visited with friends she hadn’t seen since my father’s memorial service over three years ago. She got to spend the day with grandchildren and her great-granddaughter, surrounded by balloons and streamers, and a sumptuous chocolate cake I picked up at my favorite bakery in Austin. (My sister gave me a hard time for spending money on an expensive bakery cake and not making it myself. I felt some satisfaction, therefore, when mom said it was the best chocolate cake she’d ever had in her life.) Later, mom would tell me she had the best day she could remember having for a very long time.

When I took her back to AL early in the evening, she was tired. The nurse checked her blood sugar (sky-high from the cake) and helped her get dressed for bed. I noticed in her night-gown that her knee was black and blue where she’d fallen. The nurse didn’t think anything was broken, but said she would order a mobile x-ray to be certain. She didn’t have an ice-pack, so I ordered one from Amazon and put a loaf of frozen bread on her knee. (We hadn’t yet gotten the urine culture back.) I stayed with mom until she was ready for bed, and then headed back to Austin to give Sadie an overdue-dose of subcutaneous fluids. (Sadie is doing spectacularly.)

On Sunday afternoon, my phone rang. A Houston number. Shit.

“Your mom’s okay. We found her on the floor by her chair. We don’t know if she fell, or if she just slid down. She seems fine. She’s smiling and laughing. I just wanted to let you know.”

This time, they didn’t recommend sending her to the ER. Instead, they promised to follow up on the urine culture and the mobile x-ray. Moments later, my sister called me.

“Why am I getting another call that mom has fallen again? What is going on?”

“She’s okay.”

“She’s not okay. I saw her today, and she was not okay. Her knee was black and blue. And now she’s fallen again. If we had sent her to the emergency room, we’d know now what we were dealing with.”

“You and I have a fundamental disagreement about how to deal with this. I do not believe it is best for mom to send her willy nilly to the emergency room by herself every time the slightest thing is wrong just to cover AL’s ass. Wait-and-see is a perfectly okay approach. And they are doing mobile x-rays tomorrow and waiting for the urine culture. What could the hospital do that we are not already doing for her?”

She stared yelling at me then.

“If you’d let her go to the hospital, we’d know what was wrong by now. We’d know what we’re dealing with. We’d know if she’s okay. Nothing’s been done. No x-rays. No urine culture.”

“Why are you yelling at me?” I asked.

“Because I have no control over anything. I have no control over what happens with mom. You say she doesn’t go to the hospital, and she doesn’t go. And I had a hard day. I am tired. I don’t want to deal with this now. I don’t want to talk about this.”

And she hung up on me. The second time in the past few weeks she’s done so.

On Monday, the mobile x-rays were done. Negative, except for osteoporosis in her hip. The urine culture came back. Mom has another UTI. They started her on an injectable antibiotic, which the home health nurse will give her at AL for the next ten days. No hospital visit necessary.

Mom had a good 80th birthday. She made it to her party. She ate chocolate cake and ice cream and her blood sugar went sky-high. She said it was the best day she’s had in a very long time. Hallelujah. This is my goal. I’m going to do everything in my power to make sure mom gets the bits of joy within her reach for as long as she has left. And if that means forgoing a trip to the hospital for another round of tests, that’s what I’m going to do. Because my mother’s joyous moments are more important than stemming my and my sister’s anxiety with hospital visits and doctors and tests. This is not about us. It’s about my mother. Let her eat cake.

Posted in Alzheimer's, Assisted Living, Dementia, Elder Care, Elderly Parents, Feeding Tube, Health | Tagged , , , , , , , , , | 49 Comments

Better Living Through Science

Posted on February 21, 2016 by

I take back every bad thing I ever said about antidepressants. OK, maybe not everything. Abilify did make my hair fall out. Viibryd gave me sleestak dreams. Wellbutrin plugged me up until I began looking like a snake who’d swallowed a rat. But this new one, Brintellix, has had no side effects. Zero. And, I feel better. I’m fairly astonished it’s working as well as it is.

Lunch-time walk around the Texas Capitol

Lunch-time walk around the Texas Capitol

I began the Brintellix in November, slowly increasing to the current dose of 20 mg per day. Several weeks ago, Dr. McEnroe added Deplin to the mix. I noticed a difference, a brightening, within days of adding the Deplin. I feel so much better that I’ve actually begun walking at lunch every day. I haven’t done that since my lovely boutique law firm merged with BigLaw five years ago. For the past couple of years I’ve had it in my head that I could catch up on my health and fitness when I retire. But emerging from the depression has made it clear how far I’ve fallen since the death trifecta, not only so far as my mental health goes, but my physical health as well. (And, of course, the two are inextricably intertwined.) Waiting to get serious until I retire is no longer an option.

I started with the easiest task first. I went to the dentist and got my teeth cleaned. Building on that momentum, I made an appointment with my doctor for a physical, something I haven’t done for three years. That’s right folks: I had not been to a doctor since early 2013. My blood pressure was fine, but she confirmed, as I already was well aware, I’ve packed on the pounds. The doctor ordered blood work, a mammogram, and a colonoscopy. I’ve already suffered the indignities of the mammogram, which was negative. I have a pre-colonoscopy appointment on Tuesday, following which I’ll schedule the test. It will be my first. I’m trying to put a positive spin on it, and so am looking at it like an insurance-paid colonic. Gwyneth Paltrow swears by them, so I expect I’ll be feeling super fresh afterward.

I am, however, burying the lead.

The blood work was not so good. My fasting blood glucose was high. Not diabetes high, but not normal, either. The doctor said: “Cut back on the carbs and get some exercise.” My mother is a Type 2 diabetic. I do not want to follow in her footsteps. My genetics, once again, are stacked against me. This is, therefore, a health emergency. “Cut back on the carbs and get some exercise” isn’t quite a complete enough recommendation. Naturally, I have spent the past seventeen days totally flipping out. Flipping out and researching the disease as if I’m writing my dissertation on it. I have totally immersed myself in learning everything there is to know, and doing everything I can possibly do to stop this thing before it gets started. Here’s what I’m doing, so far:

  • Daily walks, minimum 30 minutes
  • No sugar or starches (including potatoes, pasta!, flour, bread!, beans, corn, lentils, peas, and beets)
  • No alcohol (luckily, I already quit that)
  • No fruit, except berries, for now

Since I saw the doctor on February 4, I’ve lost 16.6 pounds. (I weigh in the buff at home, and was fully clothed at the doctor’s office, so we could subtract 2-4 pounds from that number to account for it.) My energy is steadily improving. I have been able to get out of bed in the morning without hours of self-negotiation. And, according to the glucose monitor I bought, my fasting blood glucose (as well my as my blood glucose throughout the day) has been normal for the past seven days. Normal! The doctor will re-do my blood work in early August. I’m looking forward to it.

Meanwhile, Sadie, my favorite cat, has had her blood work done twice more since last I posted her numbers. Each time, her numbers improve. Currently her BUN is high normal. Normal! Her creatinine, is still high at 3.1, but considering we started at 4.9, she’s come a long way. She’s also turned out to be the poster-cat for fluids. She gets excited, following me around meowing, when she sees me preparing to heat the fluid bag. She bounds up the stairs ahead of me when I go to hang the heated bag on her IV pole. She jumps up to our spot by the window, waiting for her Greenies and her 100 millilitres. Sadie seems to know when we’re nearing 100, as she starts to get a little antsy toward the end. Since we started fluids just before Christmas, she’s generally been pretty darn frisky.

But, like me, once a little piggy, Sadie has turned into a terribly particular eater. Currently, sardines in water are a hit. Since they’re good for me, too, I sometimes share a can with her. Alas, I cannot share her Greenies. Too carby.

 

 

Posted in Alcoholism, Antidepressants, BigLaw, Brintellix, Cats, CKD Cat, Death and Grief, Deplin, Depression, Grief, Prediabetes, Subcutaneous Fluids | Tagged , , , , , , , , , , , , , , , , , , , , , , , | 32 Comments