A long road

The signs of Mom’s decline are not just behavioral. Her skin seems to be breaking down. She still has one wound on her foot that won’t heal, and another wound has opened. She also has black spots on her feet – a sign of deterioration under the skin. And she has an abrasion on her knee. I thought I might have caused it – I wheeled her into a table by accident on my first attempt to “drive” her wheelchair. She yelled out in pain, but I would never have guessed that it broke skin – a bruise, maybe. But I think it doesn’t take much to cause her body harm at this point. A nurse thinks it might have resulted from Mom’s knee hitting the wall next to her bed, so the staff have put an air mattress between her bed and the wall.

Mom has been moved out of the Program Area at the Alz center – the bustling, open space that houses most activities and patients who are fairly mobile and functional. The social worker called to ask me if it would be OK if she moved to the skilled nursing side of the building, the place many patients go when they have declined substantially and require more care. I guess I could have said no, but I think deferring to the facility’s request makes sense in this case. She is too much for the Program Area staff now.

Leaving the Program Area is a loss for me, if not for Mom. She has been there for six years so I am familiar with patients there, and the staff, and the atmosphere is welcoming. But I like the idea of Mom having more care, especially with her skin problems and the potential pain they’re causing. A nurse called me today to tell me about the second wound, and I asked if these wounds hurt. She said she will ensure Mom is being treated for pain because we just can’t tell. But chances are something like this WOULD hurt – assuming pain signals are normal, which they might not be.

Mom is in a new dining room for meals now, and I have fed her there twice and missed one week while I was sick. In the two weeks between lunches, she deteriorated visibly. Yesterday, she seemed to be in distress – she was tense, which I attributed to her probably being cold, and she had more than the usual number of involuntary whole-body tremors. She kept her eyes closed and her head tilted back, and occasionally let out a slow moan. It was terrible. She did not do very well chewing meat – a first in my experience – so I fed her mashed potatoes and a few carrots and lima beans, but focused on giving her the whole bowl of high-calorie cereal – the consistency of cream of wheat – that she gets with every meal and the filling from a piece of apple pie. I do believe she will still appreciate a sweet taste in her mouth. It was almost as if she was just refusing to wake up, but it created a choke hazard, I thought, because she would not raise her head. In fact, for most of her meal, I stood and kept one hand behind her head to keep it as upright as possible. I couldn’t tell if she just refused to wake up or was unable to, or if even in an awake state, she can no longer control her body in the way she wants to.

The nurse who called today said the skin problems could be a sign that Mom might be ready for hospice. I have wondered what would trigger that. The nurse seemed to be treading lightly, and I told her: “Don’t be shy about talking about this. I think Mom’s existence at this point is awful and sad, and I wish she could fall asleep and not wake up.” I’ve said that before to friends, but I don’t think I’ve written it, and I’ve never said it to the staff. And she said, “OK, good to know. I wasn’t sure.” I’ve known her for awhile, but we are bonding a bit more now in talking about Bonnie and how to make her as comfortable as possible.

Another daughter was in the dining room with her mother yesterday, and we caught up briefly. We both used to go to support group, but we’ve both stopped. Her mom looked alert and is a good eater, but she has been in a wheelchair for years. She spent six months in hospice but was released because she kept surviving. I said about Mom, “She’s a wreck. I have never seen her this bad.” And she said, “It’s a long road.” You better believe it.

Rescue me

I lost another dog, my beloved Bambino, on Aug. 3. He had a tumor in his sinus cavity, and it started to interfere with his breathing. He was still craving food and interested in taking walks and chasing chipmunks, but he had three bad nights of impaired breathing, so we asked our vet to make a house call and peacefully end his misery. He didn’t act miserable, but, as our vet said, “He is fighting for every breath.” I feel like I’ve been fighting tears ever since. The grief has taken me by surprise.

Bambino with Mom - probably Christmas of 2007.

Bambino with Mom – probably Christmas 2007.

I don’t know if I took his death extra hard because I’m already in a low-level perpetual state of grief or if I have been feeling more gloomy about Mom recently because I had a sick dog that I knew was going to die of cancer – and then he died. It’s not important to know, I suppose. But I wonder. I imagine there is an uncomfortable truth influencing lots of my thoughts: that we can humanely euthanize our pets to end their suffering. Meanwhile, Mom’s condition now looks like suffering more than it ever has. And there is nothing I can do to change that, except hold her hand and stroke her head and hope my touches don’t scare or annoy her.

And then last Sunday, on Aug. 23, we adopted a new beagle named Carrie from a shelter. She had been caught as a stray with her presumed sister, and someone adopted that sister rather than keeping the two together. We had been watching the shelter’s site for a few weeks, and when we saw her story, we felt compelled to scoop her up and give her a home so she wouldn’t be lonely. Her arrival caused a night or two of anxiety for all of us (including Henry, a beagle we adopted from the same shelter a year ago), and I worried that perhaps I had been hasty in rescuing what I called this tiny tortured soul. But we have all adjusted nicely and it is comforting to have her around. Her cuddles are good medicine.

Laura feeds mom

Laura feeding Mom her lunch – French fries and a chili dog.

In between those two events, my siblings and significant others and nieces and nephew came to town for a family reunion with my dad and stepmother over a long weekend. This created a rare opportunity for Mom and her immediate family to be together. We all – sister Laura, brother Jeff, nieces Julia and Lily and I – visited Mom for lunch on Friday, and most of us took turns feeding her. Mom was silent for the most part and barely opened her eyes. There was nothing much to celebrate, but it was an occasion to be marked in our lives and in Mom’s.

Bonnie in her new room at the Alz center, August 2009.

Bonnie in her new room at the Alz center, August 2009.

Laura and I met again on Monday, after everyone else had gone back home, and fed Mom her lunch. One doesn’t want to be too negative while visiting a very sick loved one. But truth be told, it is a rather dismal affair to spend time with Mom at this point in her illness. I am still visiting once a week to feed her at least one weekend lunch. Today, her eyes were more open than usual and she looked at me from time to time but didn’t register that she was seeing anything significant. She dutifully ate and drank. I said encouraging things to her. She smiled just once. When she was done eating, I rubbed lotion on her hands and forearms. She knitted her brows, and I tried to massage that fretful look off of her face.

I think about this blog quite often, but sometimes I put off writing a post because I am tired of being a downer. While fixating on what kind of post to write, I missed a milestone – Aug. 28 marked the sixth anniversary of Mom’s move to the Alz center.

It’s another one of those things about Mom that represents the passage of time and is not worthy of celebration – except that her experience there has been as good as an Alzheimer’s patient’s nursing home experience can be. That is something to be thankful for.

‘Going downhill so fast’

I got a sense today of how stressed I really am, presumably as a result of Mom’s disease progression. I was walking my dogs and came upon a young couple at the end of my street with their newly adopted dog. All the dogs said hi, and we chatted and walked in the same direction down the street. I was having trouble placing them, and I asked if they lived in the house Amy used to live in. And the husband said, “We live right next door.” They were my next-door neighbors, and they have lived there for months. I apologized about 10 times. They were very cool about it, but I just took them a bottle of wine to try to explain that I’m obviously having trouble with focus and attention. That it was not them; it was me. It has been a long time since I’ve been that embarrassed.

Sundays are bound to have that effect on me for as long as Mom survives, because I am committed to feeding her lunch. I did today. I had a hard time waking her up when I arrived, and I asked an aide what the secret was to waking her for her meal. “Cold water first,” she said. Sure enough, having a glass of water lifted to her lips prompted Mom to wake up and prepare to eat. She had a couple of coughing episodes while eating, and the aide said there’s a chance Mom’s diet will be changed to soft foods that are easier to swallow. She was able to eat today, but it did take her a long time to clear each bite. She was serene most of the time, but knitted her brows from time to time when she tried to talk. I spoke in assuring tones and showered her with compliments and kisses. I took her hand at one point and she smiled and gave it a slight squeeze. I told her she can relax. She should not have a care in the world.

When I popped in on the program area Thursday before my quarterly care conference, I found Mom asleep and covered with a blanket. The aide currently assigned to Mom – they rotate every few months – said hello, and said, “She’s just going downhill so fast.” She has seen a lot. I wondered if this is a rare way for the disease to progress.

Mom, unresponsive whenI stopped in for a brief visit.

Mom, unresponsive when I stopped in for a brief visit.

At the care conference, I finally got some information about what’s going on with Mom’s changes. I had received a call a week or so ago about a blister on Mom’s foot – it turns out it was a vascular blister, meaning Mom’s poor circulation led to a wound, essentially. While she had been placed in a traditional wheelchair when she became a fall risk, she had trouble staying upright. So the staff put her in a chair that can tilt backward, started Mom on the diuretic Lasix and padded her legs and feet to support better circulation. I could feel the difference in her calves – her skin is less taut. I did mention that no one had ever called me about the transition to a wheelchair and the nursing director apologized.

She has lost 7 pounds, probably mostly fluid from her legs and feet. She is very withdrawn and has her eyes closed most of the time. She may or may not be sleeping. The activities director said she had spent about half an hour with Mom recently, and Mom did open her eyes. Mom also seems to respond to having lotion applied to her hands and arms. I said that sometimes I feel like I annoy Mom by constantly touching her, but the lotion can soothe the nature of the touch as well as provide a pleasant smell for the patient. Something to consider for future visits. Everyone agrees that Mom is a good eater, and they said that’s a good thing. “Is it, really?” I asked. They knew what I meant. But for patients at this advanced stage, the nutrients can be helpful in sustaining the quality of the skin.

Mom is now screaming again when the aides are giving her care – a shower, or changing her disposable underwear. But based on how little she moves when I spend time with her, I assume that’s the only way she can fight back. She can’t take a swing or kick anyone. And she doesn’t seem to have any words. She used to say “I hate you” to staff.

I asked if a rapid transition like this means progression will continue to be rapid. Not necessarily, the nursing director said. She has transitioned from one stage to another. How long she remains in this stage is anyone’s guess. I said I’m worried that she is fretting or in some distress. The staff members don’t think so. She may express what looks like frustration, but it’s likely that she has no awareness of actual emotions. That is comforting because I really don’t want her to fret. I just want her to be able to rest, and feel at ease, and not have a care in the world.

Rapid decline

Mom’s disease has progressed quite quickly. I’m both alarmed by it and also oddly comforted – because maybe after such a long period of stability, she won’t linger in what seems to be a less pleasant state. And that will mean she is at peace. After feeding her today, I talked briefly with the receptionist at the Alz center. I said I’m concerned that at this point, she could be suffering. The receptionist, whose husband died of Alzheimer’s, doesn’t think so.

Mom had a birthday since I last wrote, and is now 78 years old. Patrick, his mother and I left for vacation on her actual birthday, June 6. I visited the night before to feed Mom dinner and wish her a happy birthday – as if that mattered. It still feels like something I should do even as I know it’s a meaningless gesture. (Or is it?) The day after we returned, I went to feed her Sunday lunch. I was surprised by how I found her.

She was in a wheelchair - a first - and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

She was in a wheelchair – a first – and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

I sensed from casual conversation that Mom was in a wheelchair as a matter of convenience, because she had begun to have trouble even just standing, let alone walking. I got a call a few days later, and was told that aides had found a blister on Mom’s foot, which could have been part of her problem. So treatment was planned for the blister, and I said that sounded great.

I didn’t make it to the Alz center on Father’s Day. Today, two weeks since the last visit, I arrived just in time to feed her lunch. And this is how she looked.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Thankfully, being numbed by this discovery kept me from unleashing fury on any staff members. I had not been told she was permanently in a wheelchair and I certainly knew nothing about padding wrapped around her calves as a treatment for her legs. For as long as she has had Alzheimer’s, Mom has had very swollen calves, ankles and feet. Maybe they’re worse now. But if they are, no one told me. I tend to give the Alz center the benefit of the doubt. But this was stunning to me, to see Mom like this without a phone call to warn me.

It was also stunning to see her take on the frail look of a very advanced Alzheimer’s patient, which, of course, she is. I woke her up to eat and she did open her eyes and dutifully accept her food and drinks. Mom would occasionally vocalize, but her voice was very raspy and weak. I talked to her about my brother’s upcoming visit and complimented her shirt, which I believe my sister bought for Mom when she moved from assisted living to the nursing home in 2009.

At one point, I asked her if she liked her mashed potatoes. “Yeah,” she said. I laughed, happily surprised to hear an appropriate answer. And she gave a very slight smile. Two weeks ago, she had smiled broadly during lunch – almost a smile of pride after answering one of my questions. I enjoy those brief looks of recognition, but they also haunt me – is there more to Mom than meets the eye? Could it be her physical decline shields an ability to express an emotion? I know, intellectually, after her many years of a “slate wiped clean,” as I have described her cognitive abilities, that this is highly unlikely. But seeing her change so rapidly fills me with questions about what might be going on in what is left of her mind.

The weight

For so long, I had no change to report about Mom. She walked, talked and fed herself and maintained those functions without much obvious decline for quite some time. I wondered how long it could possibly last. Sometimes I lamented the fact that her illness was prolonged by this stability. But she was predictable, for a very long time. And I could have pleasant visits with her because she would laugh, she could enjoy a root beer or a Frappuccino, we could take a walk and hold hands, and she could speak the occasional meaningful phrase. She noticed when I arrived and she could still pucker up and give me a kiss when I said goodbye.

Now, those functions are basically gone. I’m told she can walk once people help her stand up. But I can’t lift her out of a chair by myself because she does nothing to assist the effort. She doesn’t vocalize much at all, and almost 100 percent of what she says is nonsense syllables. I can’t even guess what the sounds mean, but I try to maintain a steady stream of affirmative responses. She might occasionally break into a smile. She very willingly eats whatever she is fed. But she remains impassive. Eating doesn’t seem to give her any pleasure, as it has in the past. Even pie doesn’t produce much enthusiasm.

I once engaged in a comment thread on a New York Times blog post about whether there could be joy with Alzheimer’s. Sure there can, I said. At that time, Mom could be a source of joy for me, and I hoped my attention gave her some joy. She hadn’t known me for a long time, but she liked me. She saw me as a pal. She might think I’m a pal now, but she can’t show it. I’m afraid that any joy associated with visiting with Mom is gone, for her because she’s a blank slate and for me – because she’s a blank slate. This reality is weighing on me.

I am pretty confident that I’ll get used to this, especially if Mom’s decline continues at such a slow pace. It will become the new normal. That will be helpful because right now, I don’t like myself very much. My outlook on so many things – Mom, employment, housework, yard work, summer heat, my dog’s health, my own aging, travel, exercise, free time, finances – you name it – is grimmer than usual. That’s saying something. I’d like to snap out of it.

Melancholy on Mother’s Day

I’m used to hating Mother’s Day at this point. The marketing was the first thing to get to me when Mom was no longer a candidate for a gift – because she couldn’t understand the concept of a gift anymore. The marketing gets more obscene every year so I just try to dismiss it. I don’t know why this year has been sadder than usual for me. But I haven’t enjoyed the Mother’s Day season and I’m glad today marks its end. (I acknowledge that many people enjoy this holiday and I am hardly the only person who finds it difficult. I also acknowledge I am a big downer. That’s why I waited until bedtime to post.)

It being Sunday, I fed Mom her lunch. This has become a routine, though it is still somewhat new. I was late and an aide was feeding Mom when I arrived but she was happy to be able to tend to something else. Mom dutifully accepted bites of pork, cooked carrots, hot cereal and fruit cocktail. I dribbled water down her chin only once. I noticed that she would pick her teeth with her finger whenever the meat got stuck. She also scratched her ear. She barely acknowledged my presence, and she made only a few minor reaches toward her tray as if there were still some muscle memory there about what it means to be eating. But she knew how to remedy that sensation of having something stuck in her teeth. And she knows how to scratch an itch. Her cough reflex is in good shape, too. She had a minor choking response to a bite of fruit cocktail and she was able to cough her way out of it. I was watching pretty intently, wondering if I was going to have to help her. She ended the coughing with a very big sneeze. Taking all this in, I couldn’t help thinking that her physical decline is distressing, but its unpredictability is also sort of fascinating. I just don’t understand how some abilities still exist while others don’t. But nobody understands these things, which is why Alzheimer’s is such a disaster of a disease.

A nurse who knows me came by and tried to pep Mom up, patting her back and nudging her shoulders. She asked Mom what my name is, and told her repeatedly to wake up and have a visit with me. Mom did show some signs of life – she laughed a few times and spoke a few nonsense phrases. I don’t know if she ever says Emily anymore. She barely opened her eyes. I appreciated the nurse’s effort. But I don’t like the idea of having to convince Mom to be lively. I did move my chair to her other side because her focus seemed to be directed that way. I talked to her a lot, telling her about my brother and sister and nieces and how they’d all like to be able to talk to her on Mother’s Day. And I mentioned that Patrick ran a marathon. Shortly after the nurse walked away, I said, “Hey, Mom, are you in there?” And she said, “Yeah.” So interesting. And a little bit later, she said, “I like you.” I was getting ready to leave, and I said, “I like you, too. I love you.” She was starting to drift off.

I couldn't get Mom to open her eyes. She did just once while I was there - to scratch an itch on her nose.

I couldn’t get Mom to open her eyes. She did just once while I was there – to scratch an itch on her nose.

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We did hold hands from time to time. And sometimes she gave my hand a little squeeze.


And then, she dozed off. This is part of the routine.

It was a teary week leading up to this day. Many of my friends have lost their mothers, and Facebook was full of posts about daughters and sons missing moms who have passed. I can relate. And not. The toughest thing was a conversation with a friend over breakfast on Saturday. Her relationship with her mom is complicated. But she talked about her mom’s insights into some professional relationships my friend has, and it struck me how much attention her mother is paying to her life. She knew names, events, emotions, all kinds of things. My mom was an intellectual. She liked a good conversation. I’ve missed out on 10 years of her listening, and asking questions, and offering support. And just knowing me.

Care conference as…therapy?

There has been a significant leadership turnover at the Alz center. When I arrived last week for my quarterly care conference, the coordinators didn’t expect me because I hadn’t RSVP’d that I would be there. I never do that. I let them know only when I cannot be there. So they weren’t prepared. The director of nursing just met with me privately instead.

And we just talked. Mom’s meds haven’t changed. Her weight is stable. She’s a good eater. I noticed she was sitting on some kind of blue pad during my previous visit. He told me that’s a sticky substance to keep her from slumping down in her chair. If she does slump, she appears to have no inclination and/or no ability to hoist herself back into a more upright position. She also will not stand up unassisted anymore, and it takes two people to lift her. Once she is up, she will walk OK. But she doesn’t seem to have much interest in standing.

I don’t know this nurse manager well at all, so we were getting to know each other. I told him I had really reduced my visitation for awhile, but that now my intention is to feed Mom lunch on Sundays. He said any visit at any time is good for Mom and helpful to the staff. He actually made a bowing-down motion toward me and said, “Bless you for coming in to feed your mom.” Sometimes, he is the one who feeds her. And sometimes, she’ll say a few understandable words. He described Mom as “sweet as pie.”

I told him a little bit about my past with Mom, that being her caregiver was not initially easy for me, that I held a grudge against her for a long time for being a rather absent mother and an alcoholic, that over time, though, I had come to forgive her and even think she had done well as a single mother working full-time. That now, she and I are pals, and that this has been a very meaningful period of my life and always will be. She hasn’t known who I am for a long time, but she seems to detect my interest in and affection for her. He thinks she knows I am family. There is no reason for me to argue. No one can know anything for sure about her.

He talked about his own parents. He helps with their care now. Many kids experience the role reversal, taking care of their parents. That fact is not lost on me. I see and hear evidence of it almost every day.

I went to look in on Mom after the talk, and she was slumping in a chair. Two aides stood her up and then sat her down with her butt against the back of the chair so she would stay upright. There is a shortage of the blue sticky stuff, they said. I just said hello and gave her a kiss. It was a weekday and I couldn’t stick around.

I fed her this past Sunday. She barely opened her eyes during the meal, but she would open her mouth if I touched her lip with the fork and spoon. In past weeks, she was willing to eat the cooked spinach, but this time she seemed a little startled by it. I took that as a sign she didn’t like it. It’s always hard to help her take a drink of water or juice without a little spill. She had a hand up against her chest under her bib, and I pushed on it to get it out of the way while I was giving her a drink. Her eyes opened wide when I did that. I must have hurt her a little. But she didn’t yell. She really didn’t say much at all.

A few key phrases

When I can, I will feed Mom her lunch on Sundays. My work schedule is unpredictable, so establishing a weekday routine might be more than I can manage right now. But on Sunday, I can be helpful. And I have time. There is no need to rush.

Today I found Mom sitting at her table, waiting with some other ladies for the lunch trays to be delivered. I tied her bib on and started talking to her. She was peppier than the last time I saw her, which was a relief. But her talking was as bad as it has ever been – just a series of nonsense sounds really no more complex than nah nah nah nah nah.

And then she said, “I love you.” It wasn’t perfectly clear, but I knew that was what she said. I told her I love her and wrapped my arms around her awkwardly, since we were both sitting in chairs. And she patted my arm. She might say that 10 times a day to the staff. I don’t care. She said it to me, and it was meaningful. I could have had a good cry then and there, but I was able to suppress it.

Once her tray arrived, we focused on the food. I am getting better at preparing small bites. I cut the breading off of her chicken to make it less chewy. I gave her drinks more frequently than usual. I was patient. That is, until she started grasping her bib in her hand and raising it to her mouth, and eventually biting it. I worry that that is a sign that her teeth hurt, but staff members have told me it is more likely just a disease-related behavior. I took her bib off of her so she wouldn’t do that anymore.

Midway through the meal, she said, “Where do you live?” I told her I live in Clintonville, where I grew up, and that there is a new restaurant at the bottom of the street we lived on, and that it is weird to see the street corner changed so significantly. A nurse came by to give another resident some medicine, and she said Mom had been laughing earlier in the day. “She’s loud when she laughs,” she said. That was good news. I think Mom might still have the ability to crack herself up.

After she finished eating, a fairly new resident came up and appeared to want my chair. So I let her sit there and I got another chair and sat to Mom’s right. I rubbed her back a little and just planned to stick around until she got sleepy – which was almost immediately. I gently rubbed her head and ran my fingers through her hair. “You’re a good woman,” she said. “It makes me feel good to hear that,” I replied.

Not there much; not much there

And just like that, though of course not at all just like that, Mom is not very communicative. Doesn’t display much of a personality. Barely vocalizes. Can’t seem to sit herself up in her chair. Rarely walks anymore. But does still have an appetite and eats her entire meal.

I am pretty sure, but not absolutely certain, that the span of time between my last visit and my visit today was the longest in the history of her illness that I had gone without visiting Mom. More than a month. As I was walking into the Alz center, I was thinking, people have told me I’m a good daughter. I don’t feel like a very good daughter today.

And yet, I don’t have much to offer. Or, more accurately, Mom doesn’t have much capacity to absorb the affection I show to her or the stories I tell her or the compliments I give her. That’s a giant rationalization, though. I’m a believer, in many instances, that something is better than nothing. Some human contact is probably better than no human contact for someone with advanced Alzheimer’s. The staff and other residents interact with Mom from time to time, but only I am completely devoted to her – when I’m there, anyhow.

She couldn’t seem to open her eyes for quite awhile after I arrived. I had intended to get there in time for lunch so I could feed her. Turns out I was early. Mom’s tray is on the second of two carts so we sat at her table and I rubbed her shoulders and arm and tried to encourage her to wake up. A table mate chatted with me from time to time, saying she liked my hair and my earrings. The last time I had visited at lunch, this same resident was very weepy and a little bit difficult. Today, she was calm and seemed content.

When Mom’s tray arrived, I started to feed her bites: pork with gravy, scalloped potatoes and cooked carrots. Red jello for dessert. Except for opening her mouth when the fork was within range, she remained unchanged. No shift in position, no real awareness that food was on the table. I praised her for every bite. She occasionally seemed to respond with a little smile and once, a laugh.

When she was finished, I tried to stand her up to take a short walk. I pulled on her arms and she said, “Ouch ouch ouch,” the same way she had after her fall before Christmas. I got behind her and tried to lift her, all the time saying I thought it would be fun to take a walk. “I don’t realize,” she said, before completing her sentence with nonsense words. It’s interesting to me how a negative experience can bring out some understandable words. I gave up and pushed her chair back toward the table. Her toe got stuck against the foot of the table. I pulled on her leg and she yelled out in pain.

A nurse came to check on her and took off her sock. No signs of an injury to the foot. She told me it takes two people now to get Mom out of a chair. She doesn’t walk much at all. After lunch, the aides put Mom to bed for a nap. That I knew. I don’t know what had come over me, to think about taking a walk. I have always been against the idea of pushing patients beyond their capabilities or their interests, because that is usually something a family member needs but it doesn’t necessarily benefit the patient. And there I was, trying to satisfy my need to see that Mom can still walk when she clearly had no interest in getting up. And no need to get up, either.

She can still tell when I am coming in for a kiss goodbye. But she opens her mouth. She doesn’t know how to pucker anymore. On the way out, the receptionist said Mom isn’t very with it anymore, but she’s a good eater. Eating might be the only pleasure left for her. Human touch and conversation, at least today, had no effect.

Losing a friend-of Mom’s, and mine

Almost a year ago, I wrote about how Mom had accompanied friends on their honeymoon to Spain. One of my lunch lady friends, as I call them, had found some old pictures of Mom and gave them to me. I called her JW at the time, not sure if she’d want to be identified. Now, I think it is OK. Her name was Joanne Wisemiller. She passed away, suddenly and unexpectedly, on Jan. 24. It is just unbelievable to think that she is gone. And of course, it stirs up all sorts of thoughts about her and her husband and daughters, who are close to my age, and memories associated with Mom.

Joanne and her husband were Mom’s friends for as long as I can remember, having bonded first over their love of bridge. For years and years, Joanne and Gerry hosted July 4 parties at their house along the Upper Arlington parade route. I’m pretty sure I drank my first bloody mary at one of those parties, sneaking sips when no adults were looking. As I got older, I especially appreciated Gerry and Joanne for their humor, and I always thought they were such fun friends for Mom to have. They also took good care of her.

The last time Mom got drunk (as far as I am aware) was at a party at their house in celebration of a mutual friend’s wedding. Mom wanted to leave before the party broke up, but her keys had been taken away. So she started walking home, but pooped out about a mile into her trip. She called me from a pay phone at a gas station on a busy street corner – but not busy at this time, which was about 1 a.m. Lucky for Mom, I was home from college for the summer and was able to pick her up. I found her sitting in the grass at this corner. When she got in the car, she asked me for a cigarette, though I didn’t even know that she knew that I smoked. I gave her one. And after turning on the lights inside the car, I discovered that someone had used eyeliner to draw a mustache on Mom’s face. It must have been some party, and Mom had obviously had a good time. And the hosts didn’t let her drive drunk.

All this time that I knew Joanne as a kid and young adult, I was not at all aware of her professional life. After I had been at Ohio State for awhile, I discovered that she was a high-level administrator in our agriculture college – but I still didn’t know her history. I learned years later, when I was invited to join the lunch ladies, that her past included communications work at Ohio State – which is what I do. The lunch ladies all worked together years ago in the medical center or in university communications. After I left the medical center communications office, a friend still working there introduced me to the lunch ladies, and I became part of a longtime weekly lunch tradition. I have always felt fortunate that they brought me into their fold. And it was a bonus to see Joanne so frequently, and to be her friend. Since I joined the group about seven years ago, we’ve been a party of six. And now, five.

Joanne and I would occasionally talk about Mom at our lunches. Often, we recalled something funny, or I would give brief updates on her health status. We had that shared history, but we had just as much in common as friends who appreciate good writing and reading, some therapeutic girl time and a cathartic rant. She and Gerry were such excellent partners in life and have always led an incredibly active social life. The lunch ladies and I corresponded over email all day today, worrying about Gerry and mourning our friend. I find myself thinking, as terrible as it sounds, that it’s not fair that Joanne has died and that Mom still lives on with this terrible disease. There is nothing sadder than the gradual and painfully lengthy loss of my mother. The jolt of losing Joanne intensifies the sadness. Mom is not dead, but the Bonnie we all knew is long gone. And now a significant part of her life, and mine, is gone, too.


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