New manifestations of love

I have been home for several weeks taking care of my mom and visiting my dad. This transition from her taking care of him at home to him being placed in an alzheimer’s facility has been difficult on everyone. Your characteristics are exaggerated during times of trauma or crisis, I suppose. My mom has retreated into herself a fair amount. A shy, introverted woman, she is more inclined to stay at home, watch tv, and when she gets going on a story, is more tangential and rambly than ever before. Not prone to discussing emotions or feelings, she appeared detatched from the situation with my dad. This in turn frustrated my sisters, who were so focused on dad transitioning well and how he was feeling that they couldn’t understand why she wasn’t visiting more or talking more about him.

Communication is never about what one is actually saying or thinking. It is always about the perceptions others have of what you are saying or thinking, and what expectations they have already put on your statements.

I keep hoping that over time all of us will learn to lessen our preconceived ideas of what this person is saying and actually listen and try to see it from their perspective. But in the situation it is very difficult to do that. This experience is teaching me my own personality-driven limitations in compassion and understanding and I HOPE showing me how to move beyond them to a more true sense of empathy.

In my day-to-day life, I take care of myself and my cats and that’s about it. I love my friends and hopefully am able to help them through difficult times and celebrate happy times, but in general I am just myself. Living with my Mom the past few weeks and having her health and well-being my primary focus has been mind-changing. I worry about her eating, her getting out of the house, how far we should encourage her to see my dad versus how much rest she needs to garner the strength that has gone to the care of this man for the past few years, really (intensified in the last six months). Never having truly been demonstrative before, I constantly hug her and kiss her and hold her hand and tell her how much I love her and how happy I am to be here with her. And my mom, who rarely hugs anyone, cuddles me back and pulls me to her to kiss my cheek and tell me she’s so happy I’m here with her. Our mother-daughter bond has intensified in such a way that right now even the thought of going back to my other life makes my eyes well up and I worry that others will not be as gentle with her in their drive to have her feel better. Perhaps that will actually be better for her, someone to push her to go out into the world like never before.

She told me a story the other day. We were watching ‘Supernanny’, a show that televises parents learning methods of discipline from a trained British nanny, and commenting on how awful the children behaved. My dad used to be a golf pro. One time, his course was running a ladies’ tournament and for whatever reason, different households involved with the course took in women players during the tournament. My parents had taken in one of these women and one night she and my mom were sitting around chatting. It was nighttime, so she had already put me, a toddler aged 2 or 3, down for bed. As they were talking, I called out ‘Mama’ several different times, wanting to see my mom for some reason or another. According to my mom, it wasn’t bratty or whiny or anything, just this sweet little toddler voice calling out for her mama. After several times, the woman advised my mom to just let me be and not keep answering my call so that I could sleep. My mom didn’t take her advice because, ‘I just liked you so much and you were so sweet, I wanted to see you, too’.

We visit my dad every few days. Sometimes it is awful, sometimes it is okay. My sisters have described enlightening experiences where he is so kind or funny or what have you. I’m not sure if my experience is different from theirs because I go with my mom or what, but I haven’t had this transcendental experience. He seems old and tired and sad and frustrated. He asks to go home every time. He alludes to having done something wrong to be there and trying to figure out how to fix it so that he can go home. They can get a little house together. And take care of their children.

Regardless of what measure you take when younger, ultimately we’re all alone anyway.

Adventures in Alzheimer’s

My father is now living at a facility specifically for persons suffering from Alzheimer’s. There are approximately 25 people living there, men and women, in different stages of the disease. The facility is set up like a genteel home, with the living quarters surrounding a courtyard. The doors leading out all have electronic number locks on them, except for those leading to the courtyard. Clients can leave, but only when their family members sign them out. I finally understand the lyrics to ‘Hotel California’.

My dad is well aware that he is living in a home that is not his own. He would very much like to not be there. Personally, I have only heard him say this in the most unequivocal terms. Occasionally he also says in a muttered aside, let’s go out the back door. Maybe he thinks that we haven’t put him there, but that ‘Slippery Ann’, the intake person, has sentenced him to this fate. So when describing how we should leave, he sketches his plans in a conspiratorial manner, as we are all in this together. He has even said upon our leaving, now you be sure to wait outside. I’ll be out in five or ten minutes. I’ve tried before, but everyone is always gone by the time I get there.

My sisters take turns visiting him every day. As he has started to adjust to living in the home, he has ceased being angry about being there. He still asks after coming home, but not with the intensity of before. Apparently, he even described his escape routes and plans with a few sisters during visits. He and his roommate, Stan, were going to somehow jimmy open their window, with one on the inside and one on the outside (their room is not on the courtyard so there is no access for either of them to the window from the outside). Then, they were going to sneak toward the bushes and pole vault over the hedge. Dad has narrowed down his transportation options to three: take a bus, catch a cab, or hitchhike. He doesn’t have exact change, so taking a bus is really out of the question. Our town is a ‘no hail’ town, so unless he were able to call a cab, he’s not getting a cab ride home. Hitchhiking is the most reasonable option as we live in a place where people still pick up hitchhikers and as a skinny 78 year old man, my dad hardly looks like a hitchhiker picker-upper killer. If only he could figure out how to get out.

My dad has always been a very…particular man. He likes to keep everything organized and on task and that propensity has not faltered since the disease has begun to affect his brain in earnest. All appointments and visits are carefully written down and saved on multiple pieces of paper that are then binder clipped together and placed in his left pants pocket. In his right pants pocket he keeps two black pens (which are the exact same type of pen that I prefer, though I never noticed this shared preference before). Whenever he leaves the room, he has to have on his black outdoor vest. The other day, it was quite warm out so I suggested he leave it behind. He didn’t want to do that, so I offered to carry it. He held it out like a butler and wouldnt’ let me hold it. The only way I could carry it was on my back. So I did. I wore his black vest all over the home. To the courtyard, to the tv room, through the lobby. At the end of the visit, I placed it back in the closet with him never having worn it.

My dad isn’t the only resident planning his escape. As we stroll through the gathering area right in front of the escape hatch, you can hear various residents telling each other or telling their well-meaning family members that they would like to go home. One woman in a wheelchair was pulling herself along the chair rail and sing-songing that she wanted to get out of there. She was going at a pretty good clip until one of the attendants came upon her and wheeled her to the activity area for song time. They sing show tunes. My dad hates it even though he loves to sing. I couldn’t understand that until I heard them sing ‘Rock Around the Clock’ a capella. After that, I stopped encouraging him to go. You can’t ask that of people. It is too much.

There’s a romantic couple there, who are together all the time. The woman is constantly looking around for new people to talk to. She’s a very close talker and she’ll stare at you with an alarming intensity as she shows you her beads or her red purse. You’ll say how nice or how pretty it is and she’ll stare at you some more with a big smile on her face. Her boyfriend looks at her with so much love in his eyes, his world appears to be almost totally focused on her. He has gentle smiles for those that she interacts with, but his attention is mainly on her.

My dad, being ambulatory with no obvious physical ticks, is quite the ticket in the home. He is often told how handsome he is, how pretty his big blue eyes are (to which he responds with a genial smile and a widening of his eyes). One of my sisters went into his room and found him showing photos to a strange woman. My sisters are very protective of my desirable dad and when they relate these stories to me, I can feel them wanting to shoo away these women. While my dad still knows my mom and remembers her, I wonder if the day will come when he seeks out one of these women. When the disease has changed his worldview and perspective to such an extent that one of these women can bring him more comfort and love in a recognizable form that he starts to be romantically attached to her. It couldn’t be stopped of course, nor should it be. Whatever happiness can be found. But how will we take it?

For now, he calls my mother daily, and wishes he could call her more often. He keeps requesting a cell phone because, in his words, the staff often gets distracted or is too busy to help him call my mom. The staff have told us that if they didn’t stop him, the phone calls would be constant. My dad and my mom have been together for 54 years. How could he not reach out to her?

My mom was telling me of their courtship. They met at a friend’s house and all went to the tavern together (which, for some reason, the word tavern sounds very seedy to me even though it is not an inherently seedy place). After that, my mom and dad talked every day. After a month and a half, he asked her to marry him. After four months, he asked again and she agreed. They met, courted, and married within eleven months. And have been married 54 years. Tell me you need two years to get to know someone enough to marry them. My favorite part of the story is that there was another girl at the party that my dad saw and was attracted to. He would have asked her out, but saw that she had an engagement ring on. So he asked my mom out to the tavern instead. The best part is that he TOLD MY MOM THIS! Who does that?!? Oh honey, you were second choice, wanna get married? I was horrified at this, but my mom said oh it didn’t bother me.

They truly are perfect for each other.

le roi est mort

my father is dead. the man who played my father for 33 years is still alive, but my father is dead.

i received an email from my sisters today telling me that they’ve placed my father in an assisted living facility. he has alzheimers and it had all progressed to the point where it was necessary for him to live apart from my mom and where he can have more care.

my father is dead. i don’t know this man emerging from his brain. i do not live where my family lives so i have not witnessed the daily evolution of this new man. this new edition of the man. i don’t know when i will be back where my family lives. i don’t know when i’ll meet him, if i’ll meet him. or if the next time i go home it will be for the funeral.

my first memory of my father is when i was three or four. my older sister had angered me and i went to tell on her. i am sure she was being extremely unfair about tv or a game or something i wanted desperately that she did not want me to have. he chose her side and i told him i hated him. he replied that he hated me too.

i look more like my father than my mother. i act more like him, too. we are both gregarious and judgmental and flighty about our chosen careers (take a long time to decide on those careers). i locked horns with him so many times because my choices weren’t traditional, weren’t what he would have decided for me.

when i was 25 he asked me if i was ever going to get married and get a man to take care of me. this was during one of our many fights about my desire to go out and see the world and his deep desire for me to be practical and logical about the path to get there.

we often fought about telephone calls (i like to talk on the phone, he believed that they were only for transmission of messages, at MOST ten minutes. i tried explaining to him that since i often am away from those i love, i find it very important to check in with them by phone and that i was willing to pay the price for that. he said that made sense, then started in again on how the phone should only be for transmission of information.), my desire to live in foreign countries or go to school far away. or my coloring my hair. or how i was NOT his baby anymore and he did not need to wait up for me when i would visit. as a grown woman clearly over the age of 21, i knew how to get home.

he never stopped feeling responsible for me.

my father’s disease has progressed so far that he is no longer the man i grew up with, the man i feared, the man i sometimes loved and sometimes loathed. i am so far away that i cannot perceive the chips and bits of this man that might still remain. my father is gone. i can only hope to meet the man who took his place. and see if he resembles the father i knew in any way.