Thursday, May 26, 2016

Jamie's Beautiful Brain

It’s 5 am and Jamie is sound asleep in her room. I’m stealing some time to write about her beautiful brain. I’ve had a front row seat to Jamie’s struggle with brain function for nearly four months now, and, rather than thinking of her brain as a problem, her brain is precious to me: wounded and vulnerable, every little function valuable and dear. You might be interested to know how dementia, or Alzheimer's, can be observed in everyday behavior. It's as fascinating as it is tragic. 

With a great deal of love, the gift of patience from raising six kids, and the experience gained from my daughter Heather’s traumatic brain injury, Jamie has improved wonderfully regarding her attitude and emotions. She greeted a new caregiver, a stranger, at the door yesterday with a hug. She wept for joy when a caregiver used a playing card to help her recognize the number 2. When asked how she is, her usual response is one word, “Happy.” She smiles all the time. She quickly reflects whatever emotion or attitude you present to her. Smile at her, she grins, laugh out loud, she joins you. Why would you ever be cross or impatient when faced with that miracle?

Jamie is o.k. with sitting still and thinking. She does it a lot. We don’t know what she is thinking, but when she tries to speak there’s something important there, hoping to emerge for us.

She begins with words familiar to us, like “I was just thinking,” and when she just can’t say what she wants to say, “godammit.” Normal phrases like, “I’m trying to tell you…” precede her attempt to communicate an idea. This tricks you into expecting the next phrase to be just as clear. But what follows is a hesitating stumble over words grasped from the air like random apples hanging from a tree. If all of the apples were picked in the right order, you’d have a beautifully expressed thought. But you can see her looking at all those apples, knowing they have something to do with what she means to say, but she just has no idea how to choose them in the order they belong, or even how to pick them and say them at all. As soon as she moves out of rote behavior – something she’s done or said a million times – she’s lost.

But there are positives. It’s a joy to spend wordless, carefree time with her, to share the space of a mind without filters or agendas. Someone who appreciates with absolute sincerity. This experience has given me more sunsets than I’ve witnessed in the last ten years. I’ll put a movie in after dinner and we’ll get comfortable on the couch and she’ll turn to me and look me in the eye and smile thoughtfully, expressing something with simple words, in her way, that I can understand. Something about art or our relationship, or simply, “I like it here.” The movie is no distraction for her. She’s in her own mind at all times. But I always wish I knew what she was thinking.

I’m telling you all of this as context because yesterday she experienced a decline. After a series of frustrating attempts to do familiar things, she used her hand to mimic walking down stairs and said, “I’m going down.” She wept woefully and I took her in my arms. “Maybe this is just a bad day. You’ll do better tomorrow.” “No.” she said with a finality that broke my heart. Who knows about tomorrow? But she knows her journey is one of continuous decline and she feels the ground slipping beneath her.

It started after everyone left for the evening and I was cooking dinner. She was on the toilet and I heard her faint call. I’ve learned to remove the pan from burner when she calls me. I quickly arrived to see the toilet paper unrolled onto the floor and to smell that she had a bowel movement.  She looked at me with utter desperation and shook her head. She didn’t know what she was supposed to do. I handed her a nicely wrapped little bundle of toilet paper and told her, “Use this to clean your butt, just like you’ve always done since you were little.”

She nodded obediently but her hand did not obey. She rubbed her knee with her other hand and stood up, walking toward the trash can with the tissue, which is what you do with trash, like tissues.

I walked her back to the toilet and asked her to sit down. She looked at me like she didn’t understand. I said, “You have to clean your butt. Sit down so you can do it. After a few seconds I gently pushed her thighs so that she got the idea and sat down again. She cleaned herself a little and showed me the dirty tissue.

“That goes in the toilet,” I said, taking her arm and aiming it around back. She hesitated. “It does?” and she looked very confused.

“Yes, just let go of it. Drop it.” And she did. I told her she wasn’t done and handed her another one. It took a lot of patience because that “aha” moment never came. I walked her through each step, each time. After the fourth one she showed me was clean, I breathed a sigh of relief.

Unlike cutting her food, which I don’t mind doing, and putting her clothes on, which is no problem at all, and which she can on occasion still do some parts of, cleaning her butt is something I really want her to do herself for as long as possible. Hence, my extreme patience with guiding her through the process. I’m hoping tomorrow it comes back to her.

Many functions like using the toilet are rote: brushing your teeth, rinsing your mouth, taking pills, buttoning a sweater, even tying the belt on a robe… these functions just happen. You don’t realize it because you’ve been doing it for so long, but you actually use a different part of your brain to do something out of habit. I guess that’s why forming good habits is one of the keys to success: it reserves your higher brain function for more important things like forming thoughts and communicating them. When she doesn’t have to think about it, she can often just do it. It’s like a miracle, after you’ve observed her struggle with any of these, which can happen at any time when something in the routine gets thrown off.

One of the most important tasks she must do for herself is swallow her pills twice a day. Three after breakfast and about eight after dinner (most of them are supplements). Taking her pills can be a smooth ride.

After dinner I tell her not to get up, or to sit back down, and put a white dish of pills right in front of her and hand her a glass of water, or, if she motions me to back off, I put the water down on her right side. She has let me know that hovering does not help, so I set her up and then sit across the table and observe, in case she needs help.

She looks over the scene – a plain placemat with two objects on it, a dish of pills and a glass of water. She slowly looks from one to the other. Then, taking a deep breath of bravery, she lifts her hands to perform the ballet of taking pills. The hands each have their role. The left hand will pat the plate and find a pill. The right hand will find the glass of water and raise it off the table. Both hands now hold something important and she knows there’s a job to do, but it’s not easy. She looks at each of them in turn and, sometimes she just starts drinking like crazy, going through half the glass. “Don’t forget to take the pill,” I’ll remind her gently. As if I woke her up from a dream, she jerks her head away from the water and looks at me, “Oh!” she says, and looks at her pill in the waiting hand, as if it is a complete surprise that she’s holding a pill. Then she takes it and proceeds to take the rest without a problem. In this way she often runs out of water before taking her pills. Once she starts drinking, sometimes she just keeps drinking because she knows how to do it. Which is fine. Water is good for you. Automatic pilot is a familiar problem. She needs to be reminded that she might be done brushing her teeth after, eyes closed, she seems to have fallen asleep to the rhythm of it.

Some days she’ll put down the glass and reach for a pill with her “water hand,” then her pill hand waves around looking for something to do, so she puts the pill down and her water hand rests humbly on the table, as if punished for doing the wrong thing. Then the pill hand begins reaching for the water – the thing that was missing from the equation a moment ago. OK, she’s got the water now, but it’s in the wrong hand. She looks at the pills in frustration. Why isn’t a pill in her hand? The water hand is not holding the water so the pill hand can’t get the pill. She puts the water down. By now I’m at her side. I put her water in the usual hand, “There you go!” and everything starts to work as it should.

Sometimes she simply doesn’t see the glass of water and desperately asks for. “I need water!” a pill in her pill hand as she implores desperately, the water hand she’s waving just barely missing it, so I lower her hand to touch the glass and she picks it up, “I’m sorry.” The struggle is real.

After dinner last night I put her little white plate of pills in front of her with her glass of water. But there was also a folded napkin on her placemat. She was confused by the third object. She picked up the water and looked at the napkin, then the dish of pills, then the napkin, her left hand hovering over one then the other, like a helicopter looking for the landing pad. I jumped up from my observation post across the table and took the napkin away. She landed on a pill at last, and began the ballet, each hand doing as it should in the proper order.

Something new last night was that she recognized that the napkin threw her off. She also recognized that this was a sign that her brain is not really functioning well. When she came to help with the dishes, which is always a struggle anyway, she was particularly frustrated by what seemed like her normal behavior – not knowing where to put the fork in her hand.  The silverware basket in the dishwasher might as well be a Rubik’s Cube.  The additional level of dysfunction came when she forgot she was holding the fork in her right hand and removed a bowl from the dishwasher with her left hand, as if it was time to take things out, not put things in. I was very kind and patient when I said, “That stays in. Here, put the fork in, and touched her right hand with the fork.” She looked at the fork as if she was very surprised to see it in her hand. I think that’s what really threw her off.

“I can’t do it,” she said. So I said, “Like this,” and put another fork in the basket. She quickly chased my fork into the basket with hers, as if she’d lose the moment had she hesitated. For the rest of clean up she took her time, got things done as well as she normally does – glasses placed right side up, plates askew in the rack – all of it easy enough to redo when she’s not around later.

The final blow came when we were folding laundry to an Indiana Jones movie. We had changed into her pajamas, brushed her teeth, and, as is our way, were about to spend a half hour or so relaxing before her bedtime of 9pm. The pile of laundry was on the couch, but she prefers to fold on the floor where she can spread out comfortably. I gave her a little pile of laundry to work on. Usually she needs plenty of time to flatten something out, then think about folding it over, then over one more time, and whatever it is, it’s smaller than it was and you can put it in a sweet pile to refold later. She usually enjoys the accomplishment.

But last night she did not. She couldn’t remember how to fold. She laid the first item out flat, and kept flattening it. Then stopping. Then flattening it some more. Then she started crying, “I don’t know what to do,” she said, plain as day, as those familiar phrases always are. I reassured her that it was ok, but she insisted that it’s not ok. She picked up something else and flattened it. Then nothing. No fold over. Just the flattening. Her quiet tear became a sob, “I’m going down,” she said, taking the effort to show me the stair steps down, down, down, to be sure I’d get the meaning.

My heart was breaking. There’s no pity in the world like seeing someone you love in anguish, and her anguish was deep last night. We had spoken several times over the past month or so about dementia, her brain function being compromised by disease, so she knew what this was about. She was expressing very clearly that she feels the dementia gaining ground. 

What could I do but hold her and love her, and tell her I’m here for her and we’ll get through this together. I tucked her in bed, tears still rolling quietly, as she whispered, “I love you so much.”

Wednesday, May 18, 2016

Jamie: Art and Hallucinations

Last night Jamie was depressed and reluctant to tell me the reason. Lately she’s a little too careful of my feelings, which is very sweet but unnecessary. I don’t mind being woken up from a nap or hearing a problem. Ask my kids. She was very melancholy as I made dinner and finally, at my third or fourth request, toward the end of dinner, she confessed what was on her mind.

When she gets something on her mind it lingers there, in the background, as her language struggles to form around it. You can see her thinking, thinking hard, while she gestures with her hand, or both hands, and wrinkles her nose or squints trying to hunt for the words to express it. Sometimes she just shrugs her shoulders in defeat.

She said, “I can’t do anything.” I’m interpreting. She actually said, “I can’t…” then waved her hands around gently, looking at each of them in turn, and then looking at me with a helpless expression, ending with, “Yeah.” Which is the way she always ends her attempts to communicate. It’s as if she’s saying, “That’s what I’m trying to say.” But her “Yeah” often follows no words at all, just expressions and gestures, and we have to really dig with “yes” and “no” questions, starting with general topics and drilling down to specifics. Many times we never arrive at what she thought she was telling us with just that one word, “Yeah.”

I’ve found it very helpful for her to discuss her disease when she’s depressed like this. Her inability to do things and her struggle to express what’s on her mind really demoralizes her and leaves her feeling “less than.” And I want her to constantly feel that she’s winning, not losing, that she’s able, not disabled, my joy, not my burden. And these efforts on my part are really paying off in her self-esteem, which is blossoming.

So I told her, “You know, you’re actually very lucky.”
“Really?” (A word she can always find)
“Yes! Your disease is making it super hard for you to find words. You can’t say what you think, what you feel, and it’s so frustrating to you. But … you know me. You know everyone around you. You see someone at the Farmer’s Market from your old neighborhood and you recognize them right away and know exactly who they are. So what if you can’t say their name or describe how you know them. Those are just words, but that woman knew that you recognized her, and that big hug you gave her told her you knew exactly who she was.

“Some people with your disease can speak very clearly, know all of their words, but don’t know who someone is, their own family, their own friends. They forget who they were, their old job. What they did and who they loved is lost to them.”

At this point she’s incredulous. “Really?”
“Yes! But your disease has left your memory intact. Do you remember teaching economics at the University of Missouri?”
“Yes!” Big grin – because this is something she CAN do! She can remember. So I run with it.
“Were you a professor or adjunct?”
“The first one.”
“What did you like about teaching, was it the students?”
“No.” I laugh because I was sure she would have liked her students.
“The subject matter?”
“You liked economics?”
“Yes!” (She’s really happy now)
“Do you remember the other professors?”
“Did you like them?”
“Can you tell me anything about teaching?”
“I liked it. I really liked it. I really, really liked it.” (Tears)

I drilled down a little further and mentioned writing her thesis, she had a PHD, and other accomplishments she should still be very proud of. It was a moving conversation for both of us.

Although she’s sad that she could not continue to teach, she’s in touch with what an amazing person she is for having had a career she loved and being able to remember it in spite of her disease. She’s in awe that others with Alzheimer’s can’t remember everything the way she can. I never tell her that it’s likely she’ll forget one day, too. Why? We’re here now. We’re vibrant and we’re thinking pretty damn clearly right now. Being optimistic is so important for her and it keeps her from those bad days we used to have, and we may have again, when she shuts down and shuts us out and is just mad. So far, having conversations like this has kept those days at bay.

We began to talk about her artwork. I said, “Not only were you a professor, you were an artist. Not many people get to have a satisfying career and something else they do so well.”
“I want to do it.”
“You can still do it! Even though you don’t paint flowers or landscapes, your abstract paintings are amazing!”

I brought her one of the framed pieces we made together the day before Easter, removing it from its place on the wall, and showed her how lovely her recent work is. The colors she chooses, the shapes her faltering hand paints, are luminous and worthy of her brilliant past. She smiled. Tears again. “Let’s do it.” I agreed, of course.

But the reality is that creating those two pieces that one Saturday was a momentous task. She made the frames, gluing a hundred buttons around the edges after I rubbed some paint on them. We chose portions of her painting to trim and put in the frames.  That 2 or 3 hour project took every ounce of her mental strength, and the day that followed was a very bad day.

Granted, it was early in my life with her, but Easter Sunday was the day she had her worst melt down, and, or because, I was completely alone with her for 48 hours and didn’t yet really know what I was doing, I felt very vulnerable.

She started talking, again, about an incident on Friday, two days before, when she swore there was a man outside trying to talk to her and we scared him away. One of her caretakers was with her on the dock when she started telling her to leave her alone, to go inside, so this man would come. I got a panicked call, “Come down here right away, we’re having a bad time.”

It took us about 15 minutes to get Jamie into the apartment again. She was stomping around the parking lot, sitting on the curb, waving her arms and yelling, pacing back and forth, saying we had to go in and leave her alone so the man would come.

We finally got her in when I threatened her with calling 911. I didn’t know what else to do. By bedtime that night she seemed ok. And the next day, Saturday was wonderful. We created those two beautiful paintings together, along with their frames.

But the next day she insisted, again, that we had scared off this man whom she said loved her and wanted to marry her, and insisted that he was, right then, outside the door. I briefly opened the door to look, thinking it would appease her to know that no one was out there. Instead, she insisted that he was, and rushed me to get past me to the door and get to him. I wiggled in front of her and locked it to keep her from running away. She’s bigger and stronger than me and she figured out the lock and got out. In the end, after quite an ordeal, she was sitting outside the door on the ground crying because I had scared him away. She came in, I made dinner, we had our evening routine and went to bed without words. She scowled the entire evening. She wouldn’t look at me or talk to me. It was, to the best of my memory, the worst day of my life. What had I gotten myself into? I cried myself to sleep that night.

I called the neurologist the next day and the nurse explained that hallucinations were normal and her behavior was classic, not “bad” or an issue to be addressed medically. The trick, she explained, is not to fight them, but to play along. Next time, the nurse said, say something to keep her inside rather than tell her she can’t leave. You could have said, “He’ll probably call before he comes to see you. Let’s stay in, in case the phone rings!”

What I forgot to ask was, “Does working really hard mentally make things worse for her?”

Since Easter I have learned that preventing aggravation and anxiety are key. Like having this type of conversation with her, keeping her aware that she’s fighting a disease and she’s really doing great.  Reassurances bring her a lot of peace because otherwise she’s frequently worrying that she’s doing something wrong. She’s a person with a great deal of accomplishment and pride and she wants to do the right thing.

Being defective drives her nuts, frustrates her, and makes her angry with herself. So I give her things to do. She helps me cook and clean. It takes her about a minute per dish or utensil to get it into the dishwasher, but I want her to do it. First, it keeps her busy and prevents boredom, the enemy, second, it reinforces that I trust her and need her and she’s not the only one who needs a hand. At the end of the night I thank her for helping with dinner or the dishes or picking up or folding laundry, even though I had to redo just about everything she did. It’s important and she appreciates it more than you could ever imagine. Feeling useful gives her a great deal of happiness.

Tonight, after helping in the kitchen, she was thinking about our dinner conversation regarding her disease and looked at me with this very pensive expression and said, “I’ve been coming up!” while lifting both of her hands.
“Do you mean you’ve been doing better?”
“Yes! Better!”
I know it’s true. She’s doing much better.

So art, though it’s as much a struggle as getting a fork into the dishwasher basket, is going to be important for us. It’s the only thing from her past that she can still do. She has tried to crochet, but became so frustrated and sad. Art can be messy. It can be freeform and abstract. I will have to find a way help her not burn out with it. It exhausts her mentally, and a day that exhausts her mentally can lead to hallucinations and other problems the next day, so I’ll have to be gentle. But I will keep trying. Early in the day? Very brief projects?

One solution might be to paint in front of her. Let her vicariously experience creating. One day, when I had gotten all of the supplies out and set her up and put the brush in her hand, she looked at the brush and said, “Later.” Another time, before I did all of the set up, I asked if she wanted to do some art, but she said “I’m tired.” And the expression on her face as one of resignation.

But last night she said, “Let’s do it,” again. I know she wants to experience creating art, as exhausting as it is for her, so I have to make it happen in some way. I have not tried the letting-her-watch-me method to see if it gives her the same satisfaction as creating art herself. But I’ll try it.

Tuesday, May 17, 2016

Jamie and the Long Cough

After my father passed away, Jamie went through a very natural process of grieving. Without the filters or editors we all know so well, her grief was genuine and heartfelt at any moment it struck. It was an honor to behold. Without warning the tears would flow and without much command of language, the simple words. “I miss him. I loved him,” told her story of deepest sorrow as well as any sonnet.

She gave poignant expression to mourning the loss of a lifestyle she had truly enjoyed: “Who will take me out? I want to go out. I want to go dancing.” My father was on a scooter for the entire time he knew Jamie, but he was the third husband she had lost. Her last husband, Eric, died of cancer around 2008, and she missed him as well. She wanted to go dancing again. She wanted to be doted on by a man in love with her, wined and dined and carried across a dance floor. She grieved the loss of this romantic side of life very deeply.

My dad (I usually call him Richard when speaking to Jamie) had a military ceremony at his funeral and Jamie clutched the flag afterward saying, “I have three of these.” I’ve seen one in her cedar chest, but I don’t where the other one is. There may not be a third flag. She handed me Dad’s and it’s in my closet.

One of Jamie’s habitual behaviors was what I’ll call “the long cough.” My father was very frustrated with it and took her to an asthma doctor who told him she does not have asthma, but gave her an inhaler to appease her. He took her to their family doctor who said she did not have a lingering cough, walking pneumonia, any chest congestion or any reason to cough. But several times a week she would have a coughing fit that ended in complete misery with her sitting on the floor, nose running, bawling her eyes out because no one cared that she couldn’t breathe.

I was unaware of this behavior, but when I started living with her I was told that every morning Dad used to give her a cough drop to help her not cough that day and it worked pretty well. There was a bowl of them in the kitchen drawer. I faithfully dispensed the cough drop when she staggered out of her bedroom every morning coughing and clutching her throat very dramatically. The cough drop cured that morning episode instantly. Every time. As soon as it hit her tongue the coughing stopped.

Hmmm. As someone who’s had six kids, and one with anxiety, I recognized very early that I was dealing with a psychosomatic situation. What was the trigger? She had been sound asleep. On bad days, days when the house was confusing with people stopping by to give their condolences, my family staying for a few days for the funeral, then we’d have the full blown effect. It was wild.

She’d start with the same little cough as in the morning, clutching her throat. But the cough drop would not do its magic trick, so we’d try water. Water would not help so we’d ask her to sit down, or we’d say, “breathe slowly,” or “calm down.” This would only make her mad. “NO!” she’d insist, “Call him! I need meds!” I really didn’t want to call a doctor, what an ordeal!

So she’d end up on the floor, which was her ultimate rebellion. Coughing, spitting saliva everywhere, nose running, eyes blinking rivers of tears, in a classic “Woe is me” scenario. If we left her alone she’d say something to the effect of, “you don’t care if I die.” So we coddled and soothed and gave her a placebo – a calcium pill, and told her it was her meds, and she’d calm down after a little while.

The fear of this incident kept us from going out on any day when she seemed iffy. Iffy means agitated. When she was stressed or agitated, the long cough wasn’t far off.

Frequent episodes seemed the result of my father’s passing, the chaos that followed, the grief of his absence, and adjusting to the new paradigm with me in my little bedroom and her alone in hers, and women coming every day to care for her. She wanted the old lifestyle back in the worst way, but it was not happening.

I’ll skip all of the psychology and cut to the chase: she was acting like a spoiled child who wanted attention. Having not spoiled my children I didn’t want to give in to this manipulation. If she didn’t get her way she started coughing. If she was mad about anything, or you left her out of a conversation, or you didn’t do something and had no idea what it was because she couldn’t express herself and tell you what she wanted, she’d start coughing. It was not a sustainable situation.

It was exhausting to live on pins and needles dreading the long cough.

We tried tough love. “There’s nothing wrong with you. Stop coughing. You can do it. You’ve got this! Just breathe slowly.” Backfired big time.

We tried the placebo. As soon as it started we’d go to the cabinet and ceremoniously give her the little calcium pill to cure her. That worked like magic, except that now she was addicted to this new behavior. As soon as she’d have a little tiny tickle in her throat and cough once – something that a cough drop used to help, she was clutching her throat and choking out, “I need meds! Get me my meds!”

Today she never coughs. If she starts to cough a little bit, we fix it quickly with a drink of water and the occasional cough drop. We’ve found the cure. And the cure fixes her hallucinations (I’ll enjoy telling you that story later!) and her temper tantrums as well. They come up every now and then, but I think it’s been about nine days now since we’ve had any negative behavior and, although I don’t expect that run to last forever, I have to say that life is good and it’s wonderful not living on pins and needles.

We’ve stopped the long cough with two things:
One was a cure for any possible physical reality to her behavior. We thought it might be a little phlegm that she found in her throat and didn’t know what to do with. So we took her seriously and started giving her, unknown to her, an allergy pill at night with her other pills. Now, if her cough was caused by post nasal drip from pollen or her cat, we’d head it off at the pass before it could start. This worked. She had less of a cough in the morning. She continued to stagger out of her bedroom asking for a cough drop – but she wasn’t really coughing or clutching her throat! She was just sort of clearing her throat like it was a little dry. Eventually that even stopped and I only give her a morning cough drop a couple of times a week now. Plenty of water, of course and always.

Number two was a cure for her need for attention. I began noticing that not getting attention was the main trigger for the long cough. So I began to hug her more. A lot more. Hugs all day long. Guess what? No more long coughs.

For about nine days now we have had a blissful existence. Good days every day with little hiccups that we overcome by dinnertime. For example, on Sunday I was exhausted and, since she often takes a nap, I suggested one. She gladly complied and I laid her down in bed and went to my room where I slept like a log for an hour and a half. When I woke up on my own I rejoiced that she had also had a good, long nap. But when I came out of my room, there she was, sitting on a chair crying! She said she had not slept at all. She was apparently just waiting for me to wake up. This was surprising because she never hesitates to come into my room at 4 in the morning if she needs more water or hears a strange sound.

I dried her tears with many apologies and tried to get on with our Sunday, making her a snack to eat while I worked on dinner. But in her little passive aggressive way she decided to ignore everything I said to her for the next few hours. It was comical. It reminded me of a child’s behavior, but I try to constantly remind myself that she is a brilliant adult with brain damage, not a child.

I made her a snack and put it on the kitchen island, but she walked past it and started moving chairs at the dining table. I made her a drink and put it by her favorite chair and put the snack on the table next to it, inviting her to sit down and have her snack. She headed toward the chair, then took a right turn and started moving the books around on the coffee table. Anything I suggested that she do, she would start to act like she was about to do it, then do something else. It was comical. But I didn’t mind. I got it. I had left her alone for an hour and a half.  A little payback was in order.

Anything is better than the long cough.

Monday, May 16, 2016

Life with Jamie - How I Got Here.

I was in a pretty comfortable rut until my father passed away unexpectedly in March of this year, 2016.

A few years ago I freed myself from a live-in relationship that grew awkward when my man began to drink too much. My home became peaceful. I didn’t mind living with my adult son with lupus, because we had grown into a comfortable give and take. He pulled his weight the best he could and that made the sacrifice on my part o.k. We coexisted happily. His music resonated through our old house and soothed my soul.

I worked from home at a job I enjoyed for a boss I loved.  I connected with my friends frequently through online conversations and Facebook posts. Now and then I drove an hour for a poetry reading or someone came to have dinner with me. I enjoyed creative outlets like poetry, making jewelry and drawing and painting. And I even got myself a puppy in December to fill in the blank spaces and get the exercise I really needed. My mind was free to roam on our walks with the open sky above me.

At night, before I fell asleep, I watched something fun on Netflix – something I really wanted to watch, or I read something I really enjoyed reading. I had visions of making my own movie and plans for writing my own books. I wrote down ideas and sketched paintings in journals. But all the books and screenplays I started to write, and big paintings I wanted to paint, waited patiently for me somewhere down the path. My life was comfortable, almost perfect, once I had my puppy and started to feel healthier. I was very content.  For about two months.

Then on February first my father choked on a bite of cherry pie and my world turned upside down. Forty days later he passed away from aspiration pneumonia.  During that 40 days I had come down twice to South Carolina, and ended up staying, providing hospice care for him for his final five days.

I learned how to give him tube feedings, empty his catheter, help him feel cared for and comfortable, and a nurse came once a day to bathe him. Now and then his wife, Jamie, who had dementia, would lean over him and sob. She would tell him how much she loved him, and he would do the same with the little bit of breath he had. His chest compressed with her weight, he was unwilling to ask her to move. His first night home he called for help three times, asking me to roll him on his side this way, then that way, because he could not get comfortable. I paid someone to spend the night after that so I could sleep and be alert to care for him during the day, but he never called for help again at night. I assume when he realized I hadn’t slept that he suffered through his difficult nights and never complained. He was very aware of the burden of caring for him and expressed his gratitude frequently. He accepted restrictions like "nothing by mouth" with a final resignation to mortality and, without a whimper, left us on the morning of March 11 at 8 am as Jamie and I stood at his side.
At that moment I inherited the responsibility of caring for Jamie. Her dementia is at stage 3 on a scale of 4. I instantly jumped trains from the burden of hospitals and feeding tubes to 24 hour responsibility for a beautiful, healthy woman who, at only 64, cannot remember the words for things, get herself a drink of water, or put on a shirt.

About a year before, Dad had asked me if I would take care of her after he died. But he was doing well and that seemed far away. They were traveling internationally, he was taking care of her at home, he was considering assisted living because of his post-polio syndrome. Had he moved into a place like that with her, everything would be different now. She would be familiar with it and could have stayed. My responsibility would have been to visit her frequently and make her feel loved. That was one vision. Another vision was to put an addition on the first floor and bring her to my house where helpers would come and watch her while I worked from home. It seemed doable enough. I loved my father and I loved Jamie, and I didn’t mind the idea of one more person under my roof that needed me. He told me “she would more than pay her way.” So it seemed doable.

My father and Jamie lived in a luxury condominium in a thriving tourist town—Beaufort, South Carolina. The view is spectacular and the rent is commensurate. His navy pension, as a 100% disabled veteran officer for more than 10 years, supported their comfortable lifestyle when combined with some of her income from pensions and social security. This is where I’ve been living since February.

I am writing from my room in the condo about to begin my day of working from home. Jamie is still asleep, but someone is coming in about 15 minutes to stay with her while I work. This is our life at the moment. I don’t know how long we can stay here, but right now it’s very good for her. She loves this place and has many friends in the building that treat her like gold. It’s a life I never dreamed I’d live in a place I never imagined I’d be with people I never would have encountered as new, dear friends. I want to share this adventure with you.

I’ve left port, raised my sails and found the wind. The sea is choppy, my course uncertain, and my destination a complete mystery. But the wind is with me and I feel that I’m doing what I have to do. Am I doing it the best way? What are the repercussions for my son in New Jersey? How many years can I sustain a life that centers around someone becoming ever more dependent on me 24 hours a day? What will happen as her dementia progresses? What will I do if I become frustrated with her behavior, or depressed over missing my adult kids and easy life back in New Jersey? 

Why have I left them all, and my puppy, behind to pick up the responsibility my father gave me? That’s the easiest question of all. Because I love Jamie and I see in her the brilliant woman she once was, and I pity her beyond words. This is what sustains me, now two months into living with her here in the condo.

I have been told several times by several people to keep a journal and note her behavior and our interactions. This is my journal. I’ll post as frequently as I can to track her progress and my education as I learn to navigate the uncharted seas of life with dementia.