But, honestly

And tonight I thank the stars as I count my lucky scars for all the things you’ve given me -  The Foo Fighters But, Honestly from the album Echoes, Silence, Patience and Grace

I was thinking about some of the things that have happened since my dad died October 9, 1995. For me, the toughest thing is that it was sudden; I didn’t get a last chance to say goodbye and tell him I love him and what he meant to me. I know he knew, but just one more hour would have meant the world to me. The saddest thing is that he didn’t get to see his grandchildren grow up. I didn’t get to share with him just how wonderful these little beings are and how much like him his grandson is. And Leah - oh, he would have loved everything about her. He did see them and hold them and I’m forever grateful for that.

I remember seeing him the day of his funeral and it was so odd -  the long walk to his casket was otherworldly. I saw his hands first and felt my breath catch in my chest; the realness of it all struck me hard. But when I got to his side and put my hands over his, I could feel it wasn’t him anymore. Of course it was his body, but what made him HIM was without a doubt gone. And for some reason, I found that comforting.

My mom was only 56 when dad died, and she had never lived alone. I was really worried that she would fall apart but she did the opposite. She picked herself up and made sure she was with her friends as much as possible. I remember her telling me that she would only cry when she was alone; I know her friends would have understood if she cried in front of them but she said she didn’t know what their limit was on hearing her cry over dad so she wasn’t going to test it. To go out and be around other people and enjoy life as much as she could was the best thing she could do for herself. And that’s exactly what she did.

Five months after dad died, mom met a very nice man who had recently lost his wife. She had said that she didn’t want to get married again but this man was special and won her over quickly. I met him and he was indeed very special. He was kind, intelligent, and deeply in love with my mom. They became engaged and planned to go to Las Vegas to get married. I was happy for her; he let her redecorate his home the way she wanted and they were always going on little weekend trips. All the things she loved doing with a man she adored and who adored her right back.

The weekend before their trip to Las Vegas they were watching a movie at his home and he complained that he had a headache. The headache became so intensely painful that mom called for an ambulance. As the paramedics were loading him into the ambulance he looked at her and said “oh, Patty. I can’t believe this is happening.” He died of an aneurysm several days later. To see my mom go through this again within a year was heartbreaking. She never left his side and she was so brave. She handled his hospitalization, death, funeral, and the pain of losing him with an amazingly graceful strength.

She’s never been one to dwell on the bad things. In fact, what she called the best time of her life was just beginning. There were several more boyfriends to come and lots of trips to Mexico, Hawaii, and stateside. She went dancing every weekend, had more social activities than I could have handled, and she visited us in Oklahoma at Christmas and in the summer. Her health was good as far as I knew at the time. She did have a small stroke in the late 1990s, but she recovered within a week and was back to the life she loved.

I had tried to discuss with her several times how important it was for her to get her yearly mammogram, Pap smear, etc. but I was always met with resistance. Mom had a weird aversion to doctors -  she had health care through my dad’s military retirement but never used it. Instead, she went to a walk-in clinic and paid out of pocket for care and medication. Good thing she was rarely sick. I mentioned a colonoscopy once and the look of horror on her face told me what the answer was. The Pap smear thing was at least 5 years in the making. As she tells it, the doctor told her she was just fine and she didn’t need to come back anymore. I have my doubts on whether there ever was an appointment.

Her health was a huge deal to me, in part because she’s my mom and I didn’t want anything to happen to her. Another part of it was purely selfish. If she needed me to take care of her I could guarantee it was going to be a logistical nightmare for several reasons, one of them being distance. At this time my kids were small, they were 1 and 4 when my dad passed away, and I was a single parent most of the time because of Bill’s flying schedule. He was gone more than he was home since he flew for the FAA, the Air Force Reserves, and as a private contract pilot. Just thinking about having to go take care of her if something happened made my head spin.

She and I had a heated discussion about her health while I was driving her to the airport after one of her visits. She wasn’t feeling well and I told her to be sure to make an appointment with her doctor when she got home. She said all she needed to do was to get back to water aerobics and she’d be fine which exasperated the hell out of me. What kind of logic is that?? I told her that she needed to take better care of herself; one of these days something that started out small and easily taken care of would turn into a big deal all because she didn’t want to see a doctor. I said that she needed to start thinking about how this would affect me -  blah, blah, blah - and for all my talking the only thing I accomplished was that I made her angry. Very angry.

I felt horrible putting her on a plane right after having an argument, that was not how I wanted her visit to end. She got me back though. Later that night her boyfriend at the time called me and told me he had taken her to the hospital with chest pains - great, I knew exactly who was to blame for this little episode and it was me. She was fine, it turned out to be indigestion. Or orneriness. When I spoke to her the next day she asked me if I was happy now that she had seen a doctor. No, because that’s not what I meant, but I didn’t say it, I just let it go. I know when I’m defeated. From then on, we only talked about her health if she brought it up and she rarely ever did.

It's just another day

I’ve never minded solitude, for a writer it’s a natural condition, but caring for a dementia sufferer leads to a peculiar kind of loneliness - Laurie Graham

I’ve learned a lot about dementia in the last 3 years. I’ve learned a lot about myself, as well. I’ve never been very good at being patient and I had a tendency to get frustrated if I had to repeat myself more than twice. I say “had” because ever since my mom has moved here, I’ve had a ton of practice in being patient and I can repeat myself an infinite amount of times and not bat an eye. Only with her, but that’s some movement in a positive direction.

I’ve learned how dementia has changed my mom and some of the more subtle changes are the things that have taken a while to sink in. For example; mom has a chair in her room that I love. I love it because I’m the one who picked it out for her when she moved here. She didn’t really have a comfortable chair in her apartment so I bought one that I knew she would like. I also got her a really nice hassock so she could put her feet up while she watched the flat screen TV I bought. The chair and hassock have been used a lot. They’ve been used as a magazine holder and a place to stack blankets. A stuffed toy koala that she pulled out of the trash - heaven help me, I just made sure it didn’t have anything nasty on it and let it go - sits on the chair along with a little red dog. She, however, has never sat in the chair. There have been times that I’ve been changing her sheets or straightening up her room and she will either want to sit on the bed or on a white wicker chair that was in her apartment in Illinois and may be older than I am. She stacks stuff on that, too but she recognizes it as a chair. The new one doesn’t exist in her world as something to sit on. And the TV? We’ve gone over the remote so many times. We’ve practiced turning it on and off. It may as well be invisible.

I realize now that unless I repeatedly introduce something new and she is able to take it with her, like new clothes or shoes, she doesn’t see it. All the things that are from her apartment, she uses in pretty much the same way as she always did. But new things are invisible, even though she may look at them, she doesn’t remember them so she doesn’t see them. When she started having issues with getting her days and nights mixed up I was thinking about buying her one of those digital clocks that you can hang on the wall that shows the weather, time, temperature, and if it’s day or night. But then it occurred to me that she wouldn’t see it - it would be one more thing that goes unused because she doesn’t remember she has it.

Today when I went to visit and make sure she got a shower, she didn’t recognize me at first. It’s so odd to have her look at me like I’m a stranger, I didn’t know what to do for a second. She finally recognized me but it was a little unsettling thinking that eventually she will always look at me like she doesn’t know me. I’ll have to introduce myself every time I’m there and then get on with our normal routine.

I was telling Bill about today and her shower antics that are always mind boggling and he said he was sorry it was so stressful. Shoot, I thought I was being funny. Then I thought about what he said for a second; it’s not stressful, it’s heavy. It’s like time slows down and has a weight to it while I’m there and it takes me a while to get back to feeling like myself after I leave her. Many days, I get in my car and I have to sit there for a second. Just sit and be quiet. It’s not sad, it’s not frustrating, it’s just depleting. I know it shows, even when I think I’m ok and I’m retelling the high points of my visit. I’ll just have to learn a few more things along the way about dementia. And myself.

Happy is good enough

You’re the hidden cost and the think that’s lost in everything I do - Jackson Browne, Sky Blue and Black

At the end of her stay in skilled nursing, mom made it out of the wheelchair and into a walker; not by her choice, the staff took the wheelchair away once she had used the walker successfully during her therapy. She was not happy with the walker and it wasn’t because she was afraid of falling, I think she just didn’t want to change. She’s always been that way. She pouted for a while and then forgot she had ever used a wheelchair. Silver lining.

Just before mom was to be discharged from skilled nursing, Mary asked to meet with me to go over mom’s living arrangements. She said that even though mom has dementia, she felt she would do better in the assisted living area rather than memory care. She had a valid point - she was afraid that if mom was placed back into memory care her behavior would start mirroring that of the other residents there. Unlike many of the others, mom was still able to participate in conversation, enjoyed being social, and didn’t need any assistance feeding or dressing herself. She also wasn’t one to wander, especially outside.

I thought assisted living was a great idea - she would have more freedom and she would have her own private apartment and restroom. I was a little worried about yet another change in such a short time span but there was no other downside to this move. It was less expensive, I could bring in more of her furniture and she would be able to sleep better without worrying about someone wandering into her room.

We moved her things over to assisted living, put up curtains and brought in her dresser and chest of drawers from the storage unit. I bought a few more lamps and a plant, hung some of her favorite pictures on the wall, and stocked her fridge with wine splits and snacks. Now to move her in. I was nervous that she would be anxious about her fourth move since March, that’s a lot for anyone. On the day she was discharged from skilled nursing, I walked her to her new home which was right next door. We went down the hall, past the salon and dining room, and then finally came to her apartment. I opened the door for her and she just stood there for a minute. Then she said, “I’ve been waiting a long time to come back home, I’m so glad to be here”. I could have explained that this was a new place but what was the point? She seemed happy and that was good enough.

Within the first week, she had made friends with a very nice man named Oscar who was living there temporarily. He made sure that she got to the dining room for meals and kept her company. He didn’t have dementia and I never did know what brought him to live there but eventually, the time came for him to leave. Mom was so sad and she couldn’t understand that he had to go back to his home. It was so hard to see her cry; he had been lively and kind and I really think  he helped mom preserve some of what dementia was taking away. He came back a few times to visit her, but one day he showed up after a couple of weeks and she no longer remembered who he was. He stopped coming after that.

The next friend she picked out was named Larry. He had dementia as well but at times it didn’t seem like his was advanced as mom’s even though I think it was. He also had a little dog which mom loved. He never remembered me; every time I was there, which was at least every other day,  I got to meet him for the first time again. Eventually Larry started to decline and it happened quickly. He began to wander and lose track of his dog and the time came for him to move to memory care. Mom didn’t understand why he had to go away, she thought that as long as she checked on him everything was ok, but it just wasn’t enough. The staff went above and beyond once more and walked mom over to visit Larry every day. Larry was ok for a while but it was becoming clear that he was not going to live much longer; he had become so frail. Mom was able to sit with him right before he died. To lose another friend so quickly seemed incredibly unfair and she missed him so much - but only for a little while.  Within weeks she forgot that she ever knew him.

What I was seeing wasn't what was happening at all

Well I've been out walking

I don't do that much talking these days

These days

These days I seem to think a lot about the things that I forgot to do for you

And all the times I had the chance to

- Jackson Browne, These Days from the album For Everyman

There’s a lot of information and websites out there about dementia and Alzheimer’s disease.  One particular site,  https://www.dementiacarecentral.com/,  lists the 7 stages of dementia and, looking back at some of the ways mom has changed over the past 15 years, so much of what I didn’t understand  now makes sense.

When I read about the stages of dementia, what had been happening to mom became much clearer. However, I don’t think I would have thought something was really wrong even by stage 4, which is scary. In the first two stages there are no major cognitive changes that family or a doctor would recognize as warning signs; in fact, people with NO dementia are in the first stage.  Stage 2 is defined as normal age-related forgetfulness, not remembering where you put your car keys, and difficulty remembering names. All of us probably visit stage 2 occasionally, hell, maybe that’s where we permanently hang out.

Stage 3 consists of difficulty concentrating, trouble finding the right words, increased forgetfulness, and slight cognitive decline - I know I’ve probably been in a stage 3-like place a few times already. Who doesn’t have a day or a week when you’re overwhelmed, stressed, tired, operating on nothing but fumes and grit and you start wondering if maybe you have a problem? I’ve asked myself “what in the hell is wrong with me?” so many times, but I also most likely know the underlying reasons for my wobbly state of mind. Here’s the deal that I find so disturbing with this stage: it lasts 7 years before the onset of dementia. 7 YEARS. We’re just getting warmed up, folks.

Stage 4, which is early stage dementia, is described on the website as including “difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam. Average duration: 2 years”. Ah, now things are starting to sound familiar.

The end of Stage 5 is where I think mom is now, with one foot solidly in the door of Stage 6. Mom is at the point where she’s not able to remember significant events in her past and there is no memory of what she has done during a particular day. She doesn’t need as much help with her daily activities as most do in this stage, but only because her routine extremely simple. She used to bathe and wash her hair daily. Now, if I’m not there to bathe her it won’t get done under her own steam. She forgets what time of day it is - although she checks her watch obsessively, and birthdays and anniversaries don’t exist. During one of our outings, someone asked her where she had lived before moving to Oklahoma. She replied “Virginia”. We left Virginia in 1975.

I’m not ready for the rest of what’s left. How could anyone be? I know there will be a day when her face will no longer light up when she sees me, and that’s going to be tough. But when that happens, I hope that when I leave her I’ll still get a smile and a hug and a quick hand squeeze. And if I don’t, I’ll still wrap her in my arms and tell her I love her. Because that will never change.

*Title from the lyrics of “Fountain of Sorrow” by Joan Baez

It's ok to be a little broken

“Come back!” the Caterpillar called after her. “I’ve something important to say.” This sounded promising, certainly. Alice turned and came back again. “Keep your temper,” said the Caterpillar.” - Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass

Mom had a partial hip replacement the next day. She did surprisingly well; once the anesthesia wore off she was acting like it was really no big deal. Not remembering why she was there probably helped. She also had a catheter in for the first full day - she kept wanting to get up and go to the restroom and I had to keep reminding her that she didn’t need to. Since she couldn’t remember why she was there and that she was catheterized I spent a lot of time unkinking the tube (how on earth she kept getting it pinched was beyond me) and showing her the bag. When they decided to remove the catheter, I knew what was going to happen - she was going to need to get up at least every 30 minutes if not more often. I warned them, shoot, I practically begged them to leave it in for just one more day. For their sake and for mine. But no, it had to come out. Medically I get it, personally I would have sawed off a toe to leave it in for her entire stay.

The  five day restroom rodeo got off to an amazing start. I wasn’t allowed to assist her since she was a fall risk so we had to use the call button and wait for a nurse. If it was longer than a couple of minutes mom started to get anxious. Then I started to get anxious. A few more minutes and she was talking to me through gritted teeth. There were only so many nurses and aides and they were spread pretty thin. They always managed to get there within 10 minutes but those 10 minutes were tough ones to sit out.

You know how most people are pretty tired after major surgery and take little naps since there isn’t anything else to do? Not my mom. She didn’t take a single nap the entire time I was there with her. Not even a little nod-off. Sometimes she was sleeping when I got there in the morning but as soon as she saw me she was wide awake. I tried to get her to watch TV but she didn’t want to, she wasn’t interested in reading or listening to music either. So we talked about the places we had lived, her friends, and trips she had taken. Over and over. I felt horrible leaving her there at night but I had to get away and she needed to sleep. The day she was finally discharged was one of the happiest days of my life.

She was able to be admitted to the skilled nursing section of where she had been living which was a huge relief. She got started in physical therapy right away and decided from the first day that she hated it. She said it was stupid and she didn’t like the therapists coming into her room to get her. I didn’t understand what her issues were with them; they were nice and she was getting one on one attention which she usually loved. When it was time for her therapy she would tell them that she didn’t feel like going and they could come back later. I had to remind her that this wasn’t a vacation spot where she could pick and choose what she wanted to do; this was a scheduled treatment that was in place to help her. She didn’t give a single little damn. I had to resort to telling her that I would be there during her therapy sessions but only if she stayed for her entire allotted  time. If she started acting up or refused to do her exercises, then I would leave. It worked fairly well - I never had to leave but I came close.

When I was little and would get into a snit about something mom would often threaten me with the prophecy that one day I would have a child and it would act just like I was acting. That didn’t happen with my kids. It was happening with my mom.

A small detour

“Life is what happens to you while you’re busy making other plans.” – Allen Saunders

When we arrived at the hospital we were told to wait for the ambulance in the emergency waiting room. I was sure it would beat us there since her place is about 5 minutes from the turnpike and about 10 more minutes, at the most, to the hospital. We waited for about a half hour and no mom; I asked at the desk if they had any information and they didn’t. I called the director at mom’s place and confirmed that she was being taken to Mercy Hospital on Memorial Road and the ambulance with her in it had left over 40 minutes ago. We waited for another 30 minutes. Did I have the wrong hospital? I didn’t want to call back and ask but the way I had been operating the last few months really had me questioning my mental reliability (I think that’s nicer than using the word “sanity”) and honest to God, how long does it take to drive this particular 6 miles? Answer: 12 minutes. Thank you, Google.

After an hour and a half, a police car pulled up to the door and 2 officers got out and went over to the desk. The receptionist pointed in our direction and the officers turned and started walking toward us. This could be interesting. Or horrible - have you ever tried to read a police officer’s face as they're walking over to talk to you? I was trying my best but they were stony faced and serious. This wasn’t looking good at all. They made their way over to us and asked who was responsible for Patricia. I replied, “It depends on what she did” since sarcasm is my default go to for uncomfortable situations. They told me there had been an “incident” on the turnpike with the ambulance but everyone was ok. Alright, so what happened? I was told I’d have to ask the ambulance driver. For hell’s sake, I have never had such a hard time trying to get a simple answer in my life -  they weren’t budging so we sat and waited for the ambulance to arrive.

Finally, I see the ambulance pull up and they unload mom; she looked ok and they looked ok so that’s a plus. I started wondering if maybe mom went rogue and the driver had to call the police to report a violent patient but that made no sense - what could a wheelchair bound 75 year old woman with a broken hip really do other than repeatedly tell them she needs a restroom and annoy the crap out of them? I followed as they wheeled mom into a room and, once they got her into a bed, I asked the driver what had happened. No answer. The police were there to take a report from the ambulance driver so I just listened in since no one wanted to talk directly to me.

From what I overheard, the ambulance had a mechanical problem while on the turnpike and pulled over to wait for another ambulance to take mom the rest of the way to the hospital. While they were moving her from one vehicle to another, someone rear ended the first ambulance. It was a clear day on a straight road with light traffic and the big ambulances with the bright flashing lights were pulled over to the side. How in the hell do you pick that particular time to wander out of your lane and smack into the only obstacle for miles? I’ll never get the answer to that since A) no one is talking to me and B) the idiot wasn’t hurt badly enough to have to share a ride with mom. It could have been so much worse, I know. And yes, I’m thankful that mom made it in pretty much one piece but come on, we’re all adults here and I’m mostly reasonable and she is my mom. Shouldn’t I be part of the conversation?  Maybe they were worried I was going to try to sue someone? I’ll never know - refer to item “A” above.

I went over to mom and asked her if she knew what had happened on the ride to the hospital. The only thing she remembered was being on the side of a road on a gurney. She didn’t even remember that she was at the hospital now because her hip was broken. I asked her if she was in any pain and she said she wasn’t, good thing because we had a couple of hours of admitting her into the hospital ahead of us.

You have no choice, you have to choose

There are times when all the world’s asleep, the questions run too deep...Supertramp, The Logical Song from the album Breakfast in America

Mom seemed to do well enough in memory care but to me, she seemed far less “lost” than most of the residents. She was uneasy around those who were nonverbal and was alarmed at the ones who would shout obscenities and racial slurs at the staff. It alarmed me, too. Any time I was there for meals I left with my stomach in knots; mom seemed to get used to it or at least block it out. She had her friends and was settling in and finding her way.

We arranged for a physical therapist to come by a couple of times a week to help her transition from a wheelchair to a walker and to say she was unhappy about it is a vast understatement. I thought I would be there with mom and the therapist the first time he visited and after that just leave them to it -  I didn’t want to get in the way or be someone she felt she could talk into not doing the work. I didn’t call that one well at all. As soon as he arrived, she would try to wave him off with any excuse she could come up with; she didn’t feel like it, it was too warm outside (really? Because all your therapy is inside so...no), or she was too tired.

We decided together that it would be best if I was there. He was very patient with her and great at deflecting her excuses but, with me there to tell her that she wasn’t sick or being picked up or having her hair done soon or whatever excuse she could come up with, we were able to get back to work a lot sooner. We tried to explain to her that everything would be so much easier if she wasn’t in the wheelchair. She didn’t care.

On the first day of therapy it was as if all of a sudden I was the mother a petulant 5 year old child whose main focus was embarrassing the hell out of me for thirty minutes straight. I know how I used to handle that kind of attitude with my kids -  I’d stun them with lasers shot from my eyes, haul them out of earshot of the general public, and tell them to straighten up RIGHT NOW.  I knew better than to do that with my mom, but I had to come up with something she would understand and couldn't argue with me about. I leaned in and quietly told her that she wasn’t being very nice. No threats, no long drawn out explanations, no bribery. Just the facts, ma'am.

With each session she made a little more progress and started to look forward to the therapist's visits. Around the third week, he told me he was concerned that she wasn’t making more progress and her left leg was turned out even though he had been working to correct it. She didn’t seem to be in a lot of pain and by this point she was pleasant for most of the sessions. He put in a call to her doctor to stop by and take a look at her hip.

June 20, 2014 was a Friday. Bill and I had plans to attend an event downtown and then stay overnight. I was looking forward to it - we were going to have a chance to do something for us and I had a new dress and new heels that didn’t hurt too much. Score! I was just finishing packing my things when my phone rang. It was mom’s doctor telling me that he had called an ambulance to transport my mom to Mercy Hospital for emergency hip surgery and we needed to get there now to help with getting her admitted. I told him we were on our way and then I sat down on the bed and cried.

Now who was acting like a child?

Mom’s doctor had taken an xray of her hip with the mobile xray unit where she lived. He was expecting to see arthritis or something along those lines. What he saw was a hip that had been broken around 4 months prior had and healed in place. That would explain the out-turned foot and her reluctance to try to walk. He said she must have been in a considerable amount of pain ever since it happened. But she never complained about her hip. The doctor in Illinois had said nothing about her hip. She had been moving herself from the wheelchair to the toilet and bed since she fell back in March. She had hurt her knee, not her hip.

That’s what I was told and I never questioned it. Why would the hospital not xray the hip of a 75 year old woman who had just fallen hard enough to chip her kneecap? Why didn’t it occur to me to ask? I’m supposed to be smart. I’m supposed to be practical and logical and, above all else, I’m supposed to be looking out for my mom and I had failed.

Mom and me 1969

With every mistake we must surely be learning

“I myself am made entirely of flaws, stitched together with good intentions.”

― Augusten Burroughs, Magical Thinking

I was thinking the other night about what got me here. Right now. The roads I never intended to take; the people in my life I would never have known if one thing on one day was different. The bad things that ended up having some good in them because they taught me a little more about who I am and that even the worst pain fades. Little everyday decisions that turned out well  and some serious decisions that changed the course of everything. Life never goes as planned and I think, for most of us, it’s turned out to be a good thing.

My first major decision was to leave home at 19. I was halfway through my sophomore year of college when I decided I couldn’t live with my parents anymore. I was so naive - looking back now I wonder, why didn’t I ask someone for help? Why didn’t I go to my college adviser and ask what my options were? I think part of the reason is that I just didn’t know what to do and it had been a tough year; now that I know myself better I can see that I isolated myself and drew my world in so tight around me that I couldn’t see past what was happening to me. I went to my classes and I went to work but beyond that I was barely functioning. My solution was to pack up my things, load what I could into my Ford Escort, and move two states away.

I lived in Memphis, Tennessee for a year and a half and I learned a lot about being an adult during that time. I learned that having a roof over my head was my first priority, so I made sure to take care of my car so I could get to work and pay my rent. I learned that having a phone in my apartment was a luxury I couldn’t afford, laundromats aren’t that bad, there are more nice people in the world than there are mean ones, and gratitude and saying “thank you” go a long way. I also learned that I don’t like being poor, and being hungry because you can’t afford to buy food is a scary feeling.

I eventually came back home and within a week got a job that allowed me to have my own apartment, make car payments, and live comfortably enough. Being a flight attendant had never been on my radar but they were interviewing and I needed a job. Because of that decision I saw parts of the world that I never would have seen otherwise, I met Ringo Starr and his much nicer wife Barbara, Stevie Ray Vaughan, the Seattle Seahawks, REO Speedwagon, Sam Donaldson, and a dear, funny woman named Alexis Maas who had just gotten engaged to Johnny Carson. The regular people were the most memorable; the two Marines who were escorting the body of a fellow Marine on his last flight home, kids flying by themselves to their mom’s or dad’s place, and the only 2 people sitting on the upper deck of a 747 from London to Los Angeles who thought it would be fun for me to teach them how to cook airline food - it was my pleasure and one of my favorite memories.

The decisions we have to make as older adults don’t always come easy and some decisions are just figuring out the lesser of two evils. Deciding what to do with and for my mom has been by far the toughest one, mostly because it’s ongoing. The major things like moving her here and finding her a place to live were time consuming but relatively easy. It’s stuff like deciding what to do with her things that are sitting in a storage unit and eating up $175 a month, deciding which Medicare plan is the best one for her needs, deciding how to protect her assets, and hundreds of other little details that wake me up in the middle of the night or have me fighting back tears of frustration.

Because of what happened to my mom, I’ve learned to be more comfortable with asking for help, I learned that being told “no” is not an endgame, and I’ve learned that it’s ok to admit that on occasion I am so confused I don’t really know what to ask. I’ve learned that some decisions demand time, attention, determination, and all the bravery you can gather up - and some decisions take little pieces of your heart that you’ll never get back.

Altered States

Well she used to have a carefree mind of her own and a delicate look in her eye, these days I’m afraid she’s not even sure if her name is Veronica. Elvis Costello, Veronica from the album Spike

Mom settled into the routine quicker than I thought she would. She made a sweet friend who always wanted to be with mom even if mom didn’t want her around all the time. It was such a relief to know she wasn’t sitting in her room alone. I had to laugh when mom would get frustrated and tell me that her friend “couldn’t remember shit”. Pot and kettle, mom. I got her set up at the beauty shop so she could get her hair done once a week which made her very happy. She can’t remember when I’m going to be there even though it’s written down all over her room but her hair appointment? She hasn’t missed one in three years.

The residents at mom’s place had varying degrees of dementia and Alzheimer’s and most of them were women. There was one gentleman there who was just lovely; I liked him right away. He knew he couldn’t remember things anymore and he would apologize for it. He loved to make small talk and he had a little dog that he took with him on his long walks in the garden. He planted flowers that he sometimes forgot to water and pulled weeds. He was so calming; I always looked for him first on my way to find mom. He wasn’t that old; maybe somewhere in his 60s or early 70s. His profession had been something to do with nuclear medicine and, from what I was told, he was brilliant. He was still brilliant, just in a different way.

Visiting someone in memory care is like stepping into a different dimension where everyone is living in their own world and occasionally we get a little glimpse of who they used to be. There was a woman whom I loved to talk with because she seemed so normal. She had been a very talented artist and her artwork was hung on every available space in her apartment. She continued to draw and her latest piece was a pencil drawing of a photograph that was taken when she and her brother were little. You could tell by the style of her work that it was the same artist, but now her drawing was just slightly off, almost distorted. Is this the way she sees her world now?

The artist painted a 16x20 picture for my mom which I thought was really sweet. Mom, however, was mortified and weirdly irked. The painting is of a cow in a pasture - mom took it as a message. She believed with every fiber of her being that the artist was telling mom that mom looked like a cow. What?? Why?? I asked her if anything had happened to make her think that was the motivation behind the cow and she couldn’t recall if there was. Of course not.  I tried explaining that it was just a nice painting that the artist wanted mom to have. Oh, no, that’s not it at all. She wanted to put it in the trash but I talked her out of it. Instead, I put it on a shelf high enough for it to be out of her line of sight.

There was another woman there who no longer spoke English. She would follow visitors and ask them something in what sounded like German. Actually, it was a little more than asking; it was pleading, as if she was looking for something or someone she had lost. Her voice was so small that it was hard to hear her and her eyes looked like she was going to cry. I lived in Germany for three years so I know a little of the language. The only words I thought I could make out when she spoke were “please” and “help” and I had to do something - she was breaking my heart. I asked her in German how she was and told her how pretty she looked - her face lit up and she grabbed my hand in both of her tiny hands. I think just hearing words she recognized made her feel better. I wonder who she was before this awful disease locked her away in her past.

Today

“The feelings that hurt most, the emotions that sting most, are those that are absurd - The longing for impossible things, precisely because they are impossible; nostalgia for what never was; the desire for what could have been; regret over not being someone else; dissatisfaction with the world’s existence. All these half-tones of the soul’s consciousness create in us a painful landscape, an eternal sunset of what we are.” - Fernando Pessoa

Even when we become adults who are able to take care of ourselves and have our own family, there is still a part in most of us who wants to make our parents proud. We still smile and feel relief at the words “well done” or “I’m proud of you”. And for those of us who have had children; the first time we hand our own child to our parent -  is there any sweeter, more heart-swelling moment than when you look into their eyes and see tears of love, wonder, and gratitude?

There are also times when we need our parent. The times when we’re scared, unsure, nervous, or conflicted is the time to gather our family around us for strength. But there’s that pull in our heart that just wants to feel our parent’s arms around us, their hand over ours, and their voice in our ear telling us it’s all going to be ok.

I very recently had a surgery that I’ve had before and, because I’d had it before, I was nervous, scared, disappointed, and angry that my body wasn’t doing what I thought it should. I had given it a chance and it had betrayed me again. The first time, 4 years ago, I told my mom what was going on and she seemed detached, which I told myself was probably just her being nervous and not quite understanding what was going to happen. I knew that she had a deep fear of losing me since I was the closest person to her and the one who would take care of her if need be. That could be the reason she didn’t really want to acknowledge it. Perhaps it was easier for her to distance herself from my mortality and not talk about it. Not exactly what I wanted but I tried to understand.

This time, I told myself that there was no use in telling her what was going on with me. It would just make her nervous for a few minutes and then she would forget. No use putting her, or me, through that. But, there was a part of me who just needed my mom. I wanted her to hug me and tell me that everything was going to be ok. Squeeze my hand, tuck my hair behind my ear, kiss my forehead. Something.

Whenever I go to visit, her first question after greeting me and kissing me hello is to ask how everyone is doing and how I’m doing. I always respond that everyone is fine and catch her up on any little new stuff that’s going on. I didn’t tell her I was going to have surgery and I wasn’t going to; there was no point in upsetting her just so I could get what I needed for a minute. But, I caved and I told her the week before. She was so sweet about it and so concerned; she even asked if she could come and just hold my hand. This is what I wanted, this is what I needed to hear. I felt bad for telling her but also relieved. I got her in the shower, changed her sheets, gathered up her clothes to wash, and straightened up her room.

And then she stepped out of the shower and asked how everyone was doing, and was I ok. I told her everyone was doing well and so was I.

We just got back from seeing her a little while ago; it’s been 4 days since my surgery. She looked a little shocked and asked what happened to me. I told her as simply as I could so I wouldn’t upset her. She was her sweet self, and thanked us for coming to take care of her. She asked if I was in pain and I told her that I wasn’t, really. She asked if I was going to be better the next time she saw me and I told her that I would be.

Would I tell her if I had to do it over? I’d like to say that I wouldn’t, but I know myself; I’ll always be her daughter and she’ll always be my mom.