It is February

February is a melancholy month. Thinking back to childhood, it is the coldest month. In four weeks it will be March. March is the first happy month. The world is waking from winter.

February is like the early morning. The care partner gets up quietly so as to not disturb the early morning peace. He stretches and puts on a sweater. He makes coffee. He opens the shades to see the sunrise. (Shifting person lets me step outside of myself.)

Cheryl is sleeping late. Early in the day yesterday she was showing signs of her impostor delusion so I got her out of the condo.

She is upset with the passing of her cousin Gerry. Janet, Gerry’s sister, called yesterday to report the news of his passing. We talked on the phone for a little while. I put the phone on speaker so Cheryl could hear and participate. All of us reminisced for a bit. After Janet hung up, Cheryl got up to get dressed. In that interval she became the person in charge of Gerry’s celebration of life. She decided she needed to pack for the trip. I helped her for a bit.

On the fly I conjured a tour of the countryside. I was not sure of where other than simply out. I sent a big long text to her brothers and sisters so they would be aware of her mental state if she abruptly called them.

We visited her mother’s grave. We had talked of this for a couple weeks. She often loses the fact that her mother has passed away. I struggle with ways to gently help her understand that I cannot take her to see her mother. For a moment yesterday she seemed surprised to read her mother’s name on the stone. It broke my heart to realize that this is the thing she cannot remember, her mother’s death. Cheryl and her Mom were very close. Her dementia was at the very beginning about five years ago when her mother passed away. I suppose I did not realize at the time that she had shoved this knowledge into a place where it was not easily retrieved. Gerry’s stay in Hospice and our visits to see him bought back a flood of childhood memories.

The written world and its words are a jumble to her. She told me that Mom would stay here until she is cremated. I drove her to another part of the cemetery where our niche is located waiting for our cremains. I do not think she understood that she had become her mom in her thoughts.

I let that go. I decided I was trying to fix an impression that did not need correcting. Often in her conversation she is a child, her mother, my wife and mother to our children and occasionally I become Dan, David, Scott or, in the very early morning, Janice all within the same five minutes of conversation. She wondered aloud if the cemetery office would know where Gerry was to be buried. I replied that Gerry was going to be cremated per his request and his remains interred in the parish cemetery in Kentucky. Oh she replied.

I started a conversation about where to go for a walk when we left the graveyard. She said we could go to Mom’s house and then corrected herself to say, “where Mom used to live.” Internally I smiled. It seemed to me there was hope. It is February and we are in Ohio.

I suggested lunch first, so, we discussed various places nearby. We landed at one of Ohio’s claims to fame, Bob Evans’s Farm Restaurant. There are a bunch. One was close by and it was the one she would take her mom to occasionally. While waiting for our food we chatted about various topics. I sent a text to my son David and asked if he would be home in the afternoon. We had forgotten our pie plate and the carrier and I thought to retrieve it. He lives far enough from us that Cheryl would get a sense of “going home” from his house.

When we arrived at David’s house a neighbor’s garage was on fire. It was several yards and a street away but it added a certain amount of urgency to getting in David’s driveway and added a discussion of events totally unrelated to Gerry’s death. Melissa made fajitas for dinner.

It was a good outing. Cheryl was exhausted when we got home. Later this week I may probe her memory of her mother. (or not.) This was a long rambling story about a day that made me anxious about her mental state which seems to be deteriorating quickly some days and some days not.

On this morning, the day afterward, she did not open an eye until I awakened her at ten o’clock. She had not changed position from when I got her into bed at just before ten the previous evening. She did not stir when I came to bed an hour or so later. She did not stir overnight when I made my usual couple trips to the bathroom. It seems as though she sleeps more lately but sometime she is agitated about something in the evening and when I ask she is unable to vocalize her thoughts.

Dementia and Parkinson’s are miserable companion diseases. (And they both suck.)

Carpe Diem.

Children are a Joy

Even at somber occasions like funerals kids are a joy to the heart.

Verna’s funeral was today. (Cheryl’s cousin) Visitation was in church before the mass. Children playing hide and seek before mass in amongst the pews seems irreverent to many adults but not to me. The joy in their hearts shouldn’t be squashed or demeaned in any way. Some were wearing kitty ears. Some were wearing pigtails. All were dressed in their Sunday best because they were going to great Grandma’s funeral.

Funerals can be sad but not with kids around. One little guy spotted his Nana. He went to visit and scored a bag of fruit snacks. Nana is good for a treat. The same little guy needed the restroom in the middle of mass and upon the return decided to get back as fast as he could to Daddy. His father smiled and laughed with him when he returned. (Mom was more somber.)

Roman Catholic funeral mass liturgy is full of hope. There is a format but less ritual. The opening hymn was “Morning has Broken“. It is a good one full of hope and cheeriness. I always will hear Cat Stevens’ (Yusaf Islam) beautiful rendition of it in my head and because I like his music, the music of my youth, I know all the words.

Verna’s son, in his eulogy remarks, commented that someone had told him that he was now an orphan. I suppose one could say that since both of his parents had passed from this life but looking around the church full of family, children, grandchildren and friends, it seemed a poor term to describe this part of his journey through life.

Cheryl found and met with a couple cousins she had not seen for years.

She is making the snicker-doodles we started last night.

Carpe Diem.

A Capgras Night

When impostor syndrome rears its ugly head in the darkness of night it terrifies me.

I became Scott at dinner time. I realized that when she asked me where Mavis was. I answered truthfully which confused her.

She has developed a story in her head about us owning a different condo unit and moving to this one recently.

She tells me that the paint job is great.

She wanted me to walk her home. We walked out the rear garage access door around the building and in the front door though the lobby past Jane’s door and in our front door.

She seemed to recognize her place. As we came in she said she wanted to visit Jane. We came into our condo and I helped her with her coat. I hung it in the closet. She wanted to visit Jane.

I helped her over to Jane’s condo and quietly told Jane that Cheryl was unsure of where she lives. Jane is a wonderful friend and recognized that Cheryl was in crisis. Cheryl stayed with her for just a few minutes – maybe twenty. She told Jane she was very tired and needed to rest.

Jane helped her back across the hall and told me that tonight and on previous occasions Cheryl remarked that she was very tired.

When she got in I asked her if she wanted her bedtime pills and she readily agreed. As we sat and watched TV for a bit while the pills took affect she asked me again where Mavis and Zachary were.

Now she is resting in bed about an hour early.

In this case Jane seized the moment and was available to help.

Sometimes friends carpe the diem.

Sadly this seems to be getting worst and I without knowing what to do seem to be doing the only things that can be done.

From the link above:

What you can do first

With any of the neuropsychiatric symptoms of dementia, such as Capgras, we always try behavioral and environmental interventions before medications. The following can help family members manage:

  • Don’t argue with the belief. That just makes the person angrier and more convinced they are right.
  • Go with the emotion. Acknowledge your loved one’s fear, frustration, and anger.
  • Change the focus or redirect your loved one. Try to distract them with an activity, music, or a car ride.
  • Agree to disagree about this belief. Remind them that no matter who you are, you love and care for them and are there for them.
  • Be creative. In some cases, the caregiver accused of being an impostor may be able to leave the room to get the “real” person, then come back in and no longer be perceived as an impostor.
http://www.michiganmedicine.org

I have not tried the last one but I might. This is the first time I tried walking her home which seemed to sort of work (but only sort of).

Cheryl takes donepezil.

Carpe Diem (another good link)

As much as I want to make a silk purse out of a sow’s ear this impostor syndrome thing is scary stuff. And it breaks my heart that God is putting her through this. The saving grace is that she does not remember these episodes.

(Update – Cheryl has reported a burning sensation when she urinates. Perhaps this prompted this particular episode.)

A Great Time

We went out with friends to a new restaurant. We had to be seated on the second floor. There was a ladies room on the second floor.

What a relief it was to us both.

Not the most appropriate opening to a story about going out to dinner with friends but parkinson makes the very small things in life into major obstacles. Those need not be obstacles but they can win out in the “Is it hard? v. Is it easy?” tug-of-war that enters the discussion whenever any social activity happens.

I have written about women’s restrooms and some of those experiences. This is not a blog post about that. This is a story about how truly graceful are friends that Cheryl and I have in our life and have had for half a century. It starts with an email from Jan in early December proposing that we gather for dinner somewhere for our annual holiday gathering. Cheryl used to refer to this group as the defunct bridge group because although we used to play bridge at our gatherings, over time we simply gathered for a meal and socialization.

Jan suggested a few dates in January and suggested collecting at her house or a restaurant somewhere. I immediately voted for a restaurant somewhere for two reasons; it puts the eventual clean-up in someone else’s bailiwick, it gets Cheryl into a social situation were she does not believe she is a burden to anyone. (Grace on Cheryl’s part, she does not want to be a burden.) And besides, Gary and Jan go to restaurants that we might never pick just because of unfamiliarity. She picked the Purple Poulet in Newport Kentucky.

In a later email after Jan had confirmed the reservation, she wrote that we would be seated upstairs and asked if that would be a problem to anyone (grace – Jan did not single us out). I did not respond to her email because upstairs by itself is unimportant. It does tell me what equipment I might need. It also tells me that I need to call the restaurant to understand restroom facilities which I did not do. (no grace for me) Somehow with our narrow life activities, I never got around to calling the Purple Poulet and asking about ladies restrooms. I am not shy about that idea merely incompetent in this instance.

Yesterday was January 20th, the day that had been previously selected for our dinner gathering. Sherry called to ask if we would like to come to her house late in the afternoon for a drink and we would leave from her house to go to the restaurant which was a thirty minute drive through the center of town. (Grace on Sherry’s part for offering extra time to socialize and catch up.) Sherry has a sister who also has parkinson as a part of her life. Her sister is living in an institutionalized setting but Sherry spends a good amount of her time there. Cheryl is comfortable in conversation with Sherry and Sherry understands Cheryl’s difficulty with mobility and mental agility.

After I accepted Sherry’s invitation, we discussed restaurant steps, parking arrangements and restrooms facilities and, oh bye the way, if steps and restrooms were a problem, why did I not speak up? (She left out – you fool!) Sherry is too polite for that last part. She did start dialing the phone. Pretty soon it was all settled. We would meet at her house and ride to the restaurant in Gary’s GMC Acadia. (Grace to Gary and Sherry.) Sherry suggested that if the Ladies was downstairs which was my fear, we would just deal with it at arrival. (More grace to Sherry – her words – I’ll just tell Cheryl I have to go and we’ll go together when we get there.)

I managed to get Cheryl to Sherry’s house before everyone so that I could put our car deep into her driveway and out of the way. I was successful and the evening was all set. Denny and Katy arrived a few minutes after us. Gary and Jan arrived shortly thereafter. Sherry had drinks and snacks. For an hour or so we were surrounded by just friends not Parkinson. What a relief it was to us both.

It is not often that we acknowledge the kindness and graciousness in our life. There is no excuse for that. Many explanations but no excuse. This group of friends surrounded us with love and kindness and helpfulness and grace. For a few hours we, Cheryl and I, could just be. (Thank you, all.)

About the Purple Poulet; I linked their website to the first mention of them above. For me at least and I think Cheryl would agree it was a great dining experience. The restroom on the second floor was marked Ladies on the door near our table but was in fact a well appointed handicapped restroom. I have been in many. I know.

The steps turned twice and had handrails on both sides. If there is no elevator the next best thing is handrails on both side of the steps and a gentle slope to the stairway. Up is never a problem for Cheryl. Down, however, is a perceptual problem as well as a physical one. A short gentle run of steps is much less intimidating than a long or steep straight run. (grace to the stairway designer.) I have not gone down a set of steps with Cheryl forward for many years. (Sherry managed the walker while I was helping Cheryl manage the steps down – grace to Sherry.)

We both had their chicken. On their website they claim “The Best Fried Chicken by Southern Living” – It was the best fried chicken I have had in quite awhile.

This morning Cheryl is still sleeping. I am not but I should have skipped that second glass of Robt. Mondavi that I allowed myself because I was not driving to and from the restaurant. (no grace to me – grace to Gary for driving)

Carpe – the best fried chicken – Diem.

And surrounded by grace is another reason to stay connected.

Grace to you, Denny, Katy, Jan, Sherry and Gary for letting us simply be us.

The Evenings are Hardest

With all of the memory, confusion, delusion and dementia issues that have come up in our life with parkinson, evenings put me on high alert for hints about where she is mentally.

Last evening was particularly troublesome and at the same time interesting about where her mind was. For the previous couple days she occasionally would tell me how much she liked this”place” better than the other one. When I probed a little bit I discovered that she seemed to think that we were trying this condo out before we bought it. last night she asked if we were going home tonight or if we would wait until tomorrow. (Carpe Diem!) I told her that I did not want to drive all the way home tonight. I thought it would be better for me if we slept her and left in the morning. She agreed that it would be better to get a good night’s rest before driving back home.

A different discussion started about what to take with us and when to pack. I suggested that we wait until the morning because any dirty laundry I could easily pack in a garbage bag. I would not have to be neat about packing. She said, or you could wash it in the morning before we leave. I readily agreed. There were two or three story lines going at the same time. There were condos in two different places, here and at home. But we were going there tomorrow.

It became important to inform her sister Nancy that we were coming home tomorrow. I sent a text message to her sister informing her that she might get an odd phone call in a little bit and to just go with it.

Cheryl decided to water the plants so that they would be okay while we were gone for a week. (Nice, we were coming back.) I kept my mouth shut and helped to fill the little measuring cup we use to water the house plants. The story was still unfolding as the evening went on.

It looked as though Nancy was off the hook for the phone call and I informed her about it. Cheryl shifted gears and called her other sister Debbie. (Smiley face) I did not see that coming.

I helped her dial the phone to talk to Debbie and scrabbled to text Debbie about what was happening. I was not fast enough and opted to talk over the top of Cheryl to quickly explain the purpose of the call. Deb caught on quickly and smoothly adjusted the topic to their cousin who was in the hospital and probably soon moving to a close by hospice facility. They talked about that for awhile.

When she hung up I informed her that I had texted Nancy and told her that if Nancy needed more information about where we were or our other travel arrangements she could ask Deb. Cheryl replied that she had just talked to Deb and that would work. (Another smiley face) She did not remember that I was in the room while she was talking to Debbie.

I better call Anna and tell her too. When our daughter Anna answered I said over Cheryl, “Just go with it.” Anna did.

It was a busy hour and a half with phone calls and plant watering but all was well an hour or so later when we went to bed. She got up once to visit the bathroom and eventually got up for blueberry pan cakes and orange juice at about 9 AM.

NOVA was a repeat anyway.

Carpe sundowner Diem.

A great sunset picture from the LA Times.

Physical and Mental

These two aspects of the Parkinson Dilemma are frustrating from a care partner viewpoint. They are the source of laments and weariness. The grind can be debilitating in many subtle and unsubtle ways.

Physical disability is only recognized by Cheryl when she is so physically tired that she cannot stand up. And even then she fights the thought that she physically cannot do something. That something might be as little as getting up out of the chair that I put her in because I was worried about her falling. There must be a balance somewhere. So I help anyway without trying to be a helicopter helper and hovering about her space.

Her mental ignorance of her ability to do something – rare is the occasion that she will ask for help – is simultaneously frustrating and heartwarming. She wants to do it. If she starts it and I complete it she feels like she did it. (Ugh!) Her memory does not allow her to remember that I completed whatever it was. So I help anyway without trying to be a helicopter helper and hovering about her space secure in the fact that she will not remember and assured that it is unimportant for me to correct her when she tells someone – see what I did. (except when she tells the doctor.) Tee Hee!

Seize the day and make something new if things are not going your way. Parkinson is a progressive dilemma and in Cheryl’s case there is an element of creeping apathy. The meah factor appears as she loses interest in doing things – exercise, writing birthday cards, visits with friends, laundry, making cookies, taking down the Christmas tree and decorations and other things. A little push every now and then never hurts. She will not remember that it was not her idea if you are subtle with your pushes.

Today we will visit a cousin of hers who is in the hospital. She is uninterested in exercise class. The hospital will be a long walk so we will switch activities today. And then as we left the little lunch place and headed toward the hospital my son called with a request to pick up our grandson after school. More driving but out in the world today. We will go to the hospital tomorrow.

This is an old picture but it is how I see this woman, the love of my life, the place I am home. I see that smile less and less but sometimes early in the morning it peeks out of her face.

Carpe Diem even if you cannot.

Ago

When we were young Cheryl was a very good seamstress. She impressed me by making me and the boys a couple of shirts. I have no idea of the amount of work, effort and skill it takes to make other items of clothing but the year she made us custom fitting flannel shirts for Christmas I was super impressed. I still have a couple. The rest overtime I managed to wear out and fray most of them beyond repair. I can tell you that there is nothing, nothing better than a well tailored shirt. If you have ever had a shirt made for you, shirts off a rack are never the same again. Although I never owned one I can understand why men could spend thousands of dollars on a hand made suit. No wedgies in your armpits or elsewhere.

Today for whatever reason she has decided the pillows need to be trimmed differently.  Here we are in Joann Fabrics. It is hard for me to understand what she is thinking. She has a hard time expressing her thoughts. It is overwhelming like a lot things these days. I really do not know how to help her.

The plan that I conjured was to get outside before the inclement weather turned up. Maybe a walk even though it is cold the wind is still. And afterwards we can have some lunch somewhere. It is Sunday and we have no plans.

But she found her stash of earrings when she was putting her clothes on. I was in full on waiting mode in my little office hide away hoping to not get frustrated and jump in to speed her up. This is January in Ohio and it has been weirdly warm for a couple weeks and that usually means the crap is coming. I became anxious and went back to check. She was messing around with her earring stash. I reminded her we were going to take a walk and have a little lunch somewhere. Oh yeah, that’s right said she. She came out of the bedroom with a bunch of her earrings in a box to take to the jeweler for repair that they did not need. I pointed out that it was Sunday and her favorite jeweler is closed today. She said maybe we could go sometime this week and I readily agreed.

Let’s go take a walk and get lunch. Okay she said.

That all went out the window as we got into the car and she told me about Joann Fabrics and pillows and fringe and trim and once seam binding. Happily I knew what all of those were but had no idea why she was telling me or what she had in mind. I had a lot of questions. I reluctantly drove toward Joann Fabrics instead of our favorite park to walk in. Switching from earrings to pillows left me dumfungled.

I drove to Joann Fabrics and later after we had absorbed enough of the ambiance, we went to a close by Cracker Barrel for salads and pillow talk. This was a soft talking day and Cracker Barrel was a bad pick for quiet conversation but they did have a nice wood fire going near where we were seated.

Later when we got home she showed me the green pillow that she had been talking about. I think she made this waiting for one of our kids to get big enough to be born. I do not remember which one but this pillow has been in our household for several decades.

Carpe the sewing project Diem.

A Nice Dinner

We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.

It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.

Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.

These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.

I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.

AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.

Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.

As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.

Carpe date night Diem.

With This Ring

With this ring I thee wed. It was a long time ago and I do not remember the actual wording of our vows as I slid the wedding band on her finger. Lately she has the delusion that her wedding band belonged to her deceased sister Janice and was give given to her by her mother for safe keeping. Last evening she told me that she wanted to give it to her sister’s granddaughter.

Stories and delusional narratives like this that she makes up out of whole cloth disturb me. And, at the same time, they are very interesting to me. They are a kind of window into her confused mind.

In the past few months, Janice, is on her mind a lot. She talks to her in her sleep. She talks to her in her head during the day. She will find an old photo of Eric or Kevin and remember Jan. At night if I awaken her when I visit the bathroom, she might say, “Jan, what’s going on?”

She mixes up her sister Nancy with Janice. Nancy was very close to Janice in life. That thought mingles the two sisters in her current mind.

Occasionally she will say to me, I should call Jan and see how she is doing but I don’t know her number so I’ll call Mom first. With people dealing with dementia and confusion the experts say to go with the conversation and accept what the delusion may be at the moment. I do mostly but I avoid promotion or continuation of a mistruth. I respond with, “Think about Jan for a minute” and she will say, “oh, yeah she’s gone isn’t she?” To which I respond yes, she is but you can still talk to her in your head. You can say Hi to your Mom too. (I always worry that it will make her sad. It does not seem to do that. She seems calm with the fact that she remembers her mother and sister’s passing.)

She brought me this photograph last night that she had found in her office. Her little note “Hoo? is this” made me chuckle. I still have that Hilton Head hat and occasionally wear it in the summertime. That is her shoulder off the left of her posty note. I have a gray mustache but Cheryl’s hair is still brown. I put it on my desk to look at and remind me where we are on this road.

I have no idea who took the picture. the print date on the back is June of 2006, so, it is pre-parkinson and his damned disease.

After we had been married twenty-five years we gave each other new wedding bands to commemorate the occasion. The inscription reads Cheryl to Paul 8-29-70/95 on mine. (This is so I would not forget our wedding date. We met on the 30th of August, so, I always have had a little mental confusion about the date.) Twenty-five years down the road her fingers were more robust as were mine.

Our 25th commemorative bands are larger. About a year ago she complained that her wedding band would simply fall off her finger and she wanted to get a chain to put it on to wear around her neck like a necklace. I took her to the jeweler and we found a chain. She later discovered her original wedding band and found that it fit again after losing Parkinson weight. She has been wearing it for many months.

In the past couple days she believes it to be Jan’s wedding ring.

Carpe Diem.

Janice