Hallucinations

Discoveries of Her View

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Cheryl is safe in her room a Bridgeway Pointe and I am cleaning up and sorting through papers in her office. She has collected vast piles of birthday cards, Christmas cards, notes, emails and other writings. She has put these together in random collections of paper that, at the time in her thinking, belonged together. (Punding is the term used by the Swiss.) This collection of items is her version of it.

One of the thoughts that comes through to me is a background fear of losing her memory and remembrances of her life. Some of her notes to herself are frantic in her attempt to categorize and save memories.

In the following email she is very succinct in her experience. I uncovered it while sorting. At the time she was taking amantadine. It was prescribed to help deal with the dyskinesias (rapid uncontrolled movements). After a failed trip with lifelong friends Cheryl wrote this letter to explain. It was, I think, the first time she felt the need to explain things to others. Here is her email to Cathy:

Wed, Sep 5, 2018, 10:04 PM to Catherine

Cathy and Paul,

I hope you’re having a good time on Mackinac Island. The tour in which Paul and I participated was very informative and fun. We learned a lot about the island, the people who live there all year round, the horses and how they are cared for, the history of the island, what happens during the winter when the horses are moved to Michigan’s Upper Peninsula, and much more. The Harbor View Inn is a very comfortable hotel, the food is always good and there is plenty of it. This is why we were so excited about sharing this trip with you.

I want to explain to you what happened to me last weekend. Every 3 months, I have an appointment with either my neurologist or with his nurse practitioner. Last Tuesday, August 28, my appointment was with the nurse practitioner. During the past 10 months or so I have been taking a new medication that was prescribed for me by the nurse and doctor. It is a drug that is supposed to keep me from swaying side-to-side. By summer I was taking this drug 3 times a day in addition to my prescriptions of Sinemet (I’ve been taking Sinemet for the past 8 years ever since I was diagnosed with Parkinson’s Disease).

About a month ago, I began to experience hallucinations. They weren’t too bothersome. They usually manifested themselves as vivid, sometimes bad dreams. By the time I met with the nurse practitioner (Maureen) last week, these hallucinations were becoming a little more than dreams. I asked if I should begin to wean myself from this new drug. Maureen agreed that I should begin to do that, and we worked out a schedule … and I began to work on eliminating that drug the next day. For a week, I was to stop taking the 7am dose of the drug… I didn’t notice any bad reactions… I still had the hallucinations but they hadn’t become any worse. They were just an annoyance.

On Saturday, Paul and I had a nice drive from home to Lansing, Michigan. The weather was nice. We stopped for lunch in a nice restaurant in Van Wert, Ohio. Then we drove on to Lansing, checking into our hotel around 5pm. We found a nice Bravo restaurant near the hotel, and we had a delicious Italian dinner. We watched TV at the hotel for a while. As I was organizing my things and getting ready for bed, I began seeing things that weren’t really there. There were bed pillows piled on the bed the way they usually are… but I saw what looked like a little child peeking out from under the pillows. I knew this was an illusion, but it persisted. Paul and I talked about it, and Paul said that we should just go to bed and everything would be ok. Based on what had been happening in previous weeks, I thought he was probably right. So we went to bed. Then what I called the “hallucinations from hell” began. The little child kept appearing in and around the bed with the pillows continuing to move. What appeared to be a man wearing a long piece of fabric (I would not call it a cape, but more like a blanket) was “flying” around the ceiling. We tried turning out the lights… nothing changed… things were still moving around. Paul did not see any of this, but he believed me. Finally his solution was for me to close my eyes, since this was all apparently in my head. I tried that for a while, then became frustrated with the whole situation. I got up and walked out of the room in my pajamas. As soon as I heard the door to the room close behind me, I realized that I did not have the room key. Fortunately, Paul heard me and went right to the door and let me back in. But what I had just done frightened both of us. After that I closed my eyes and tried to sleep, repeatedly telling myself that none of this was real, but I wasn’t very convincing. Somehow we made it through that night, but with very little sleep.

When Sunday morning finally arrived, we found a nice restaurant close by and had some breakfast. We talked about the trip and what had happened Saturday night, and we decided that we could not stay and go on the tour. We had never experienced anything like that before, but decided that we did not want to expose anyone else to our troubles. We felt it would be better for us to leave… that would ensure that you would have a good time.

We both think it was a good decision because I continued to have these horrible hallucinations for a couple more nights. Since it was a holiday weekend, I had a difficult time getting in touch with my neurologist’s office. I sent a couple of emails, asking for assistance. Of course, it was not an emergency. I was certain that it was my body’s reaction to withdrawing the medication. I had not thought I would have such a violent reaction. On the other hand, I did not want to increase the dosage again – that would just cause me more problems. So we toughed it out. Each day and night things went a little better. At home at night, the ceiling fan in our bedroom would appear to be falling toward me and the windows would appear to be moving toward our bed… mind you, they never came all the way to the bed, but it was still unnerving. There were people and children moving around in our bedroom and in the living room (this went on day and night). In our master bathroom, which is of course right off the bedroom, a couple of the hand towels were turned into a puppy… I was very surprised when I saw that!

Early yesterday the nurse practitioner contacted me, answering my email messages to her. I had asked if it would be a good idea for me to speed up my withdrawal from this drug, or if it would only cause me more problems. She answered that she did not think my reaction could be much worse. So I should stop taking it all together, and contact her with frequent updates about my condition.

This seems to be working. I’m not out of the woods yet, but I’m definitely feeling better. And the hallucinations are almost gone (I’m almost afraid to say that). But I think they are no longer a problem.

Again, I’m very sorry that Paul and I could not go on the tour with you, but I think now you understand why. We will go on another trip together again sometime soon.. maybe in the spring or summer.

I thank you for your prayers.

Take care.

Love,

Cheryl

This is the best and clearest description she has ever given me of her hallucinatory apparitions. She still sees people, things, children and bugs but less so and the visions are not terrifying to her as they were on this trip.

To me, it is a gift to understand what she has been going through in her mind. This is a love story that is not finished. I think that many of her visions are of people she knows or has known. Much like the theme of the TV show “Ghosts” she may be able to see beyond this world. (Why not?)

Carpe Diem.

I Suppose it is True

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One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Today is Odd

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But I am glad it is over with.

Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.

Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.

The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.

After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.

I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.

When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)

The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.

We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.

Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.

As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.

How do I feel?

Exhausted. Carpe Diem.

Changes are So Slow

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Today as I encouraged Cheryl to wake up and get out of bed it occurs to me that the changes are very slow. This morning is very different. It is hard to recover from a night of little or no sleep.

Yesterday she was awake very early simply because she had not slept overnight. I was not awake overnight to observe her but I get up two or three times to use the toilet. I long for the days when my bladder could contain my overnight urine output until morning but alas those days are gone. (I have digressed.) Each time I made this trip she was awake and talking to me. As I attempted to fall asleep, she squirmed as she attempted sleep. Each time I woke up she was in a different position. It suffices to say she slept little overnight.

Yesterday she was delusional and hallucinal and those experiences went to talking to her mother, my mother, seeing our two sons around, seeing her deceased sister and our smallest grandchild, Zachary.

Yesterday evening was my regularly scheduled meeting with friends. We formed a stock club many years ago and we enjoy a few beers and talk about various get-rich-quick schemes as well as attempting to discover the next Walmart or Amazon. It is a satisfying evening for me and our son Scott comes over to hang with Mom for a couple hours.

We had a gift for our newest high school graduate so I enticed our son David to stop by and pick it up. As I was texting David and working out the details Cheryl wondered aloud if Scott was bringing Zachary with him. I texted Scott with that request.

Our daughter-in-law brought Zachary over after he had been fed at home. Scott came at the usual time to hang for awhile. And David came by for a few minutes to pick up the gift and chat with Cheryl for a few minutes. I left for my meeting.

She saw them all in reality instead of inside her head.

Afterward she went to bed and although she was awake when I returned from turning off the lights and reading for a bit she fell asleep shortly thereafter.

Today she really had a hard time getting started. I rolled her, she has a new transfer chair, to breakfast after getting her on and back off of the toilet. She ate scrammed eggs, toast, bacon and some orange juice. She has started reading the Wall Street Journal to which I subscribe. (Getting rich quick is still strong in me.) She likes the editorial pages. I rolled her back to the bedroom afterward and now I hear her moving around selecting her clothes for today.

Carpe Diem.

Sibs Dinner

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Cheryl and I gathered last night at a place on a little river nearby with most of her brothers and sisters to celebrate nothing in particular. They just wanted to be together for a bit and share dinner.

The conversation swirled around Cheryl and a small child in the next room was testing her lungs on the building acoustical characteristics by screaming. She was probably about three years old and comfortable in her own skin. No one was scolding her.

Tari had her bluetooth cicada stuck in her ear in case there was an emergency and drank a very white pina colada. (I always saw them as yellow sometimes pink if they had a maraschino cherry garnish.) I put my cheap cellphone on the table in anticipation of Cheryl’s 7PM medication but forgot to check if the alarm was set. Nancy has gotten Gene to drink amaretto sours which is the only thing she will drink other than water. Gene usually drinks only water. Cheryl had a Pepsi because they did not have Coca Cola. Ken ordered a Captain and Sprite which I suppose is another Pepsi product. Jill drank water no ice. I had a dark colored Budweiser tasting beer (beir) on tap brewed locally by some mystery brewer specially for this restaurant. It was okay bier.

The food was excellent. The Deutsche themed restaurant offered schnitzel which I have not had for some time. Kartopfelpfannkuchen came with it. I ordered that. It was perfect. Cheryl ordered chicken tenders with the signature bourbon barbecue sauce, broccoli and apple sauce. She ate most of it which meant she both liked it and she was hungry. Barbecue chicken of some sort was the majority dish for the rest of the table. Others had a rib-eye steak and chicken cordon bleu. Those decisions made the conversation continued loudly. Cheryl had her parkie voice on which is very quiet.

The room was decorated with models of tanks and other weapons of war. Above the two marines in the front window there hung a bazooka the nemesis of tank warfare. It did not appear loaded. The current Abrams (M1) tank did not have a model present as did not the Bradley fighting vehicle. I think there was a Patton on display.

This is the sort of gathering that Cheryl’s mother Elaine would have enjoyed and as we were driving away it became apparent that Elaine had been there. She began to worry that her mom would not get home. That was our job most of the time when her mom was still alive. I assured her that her mom was where she lived now and would not need a ride. Cheryl reminded herself that her mom had passed onto another plane.

When we got home we watched TV for a bit and as it got closer to bedtime and she was more tired, she was also more confused. We talked some more about Elaine and as she remembered that her mom was in heaven, she asked, “Was there a funeral?” I replied, yes. Do you not remember? No, I do not she told me. So I started down the road of jogging her memory. Nancy got up and read a wonderful eulogy about your mom. Do you remember? Oh yes I remember that now. She talked about Bob and Mom. (Nancy did not but did a very respectable job of eulogizing her mom.) It is hard to keep calm and composed when your parkie wife wanders off into the memorial weeds. I merely acknowledged that and reminded her that we had a little luncheon in St. Clement’s lunch area. She remembered that pretty well.

She calmed down and called our son Scott with the news that we were home downstairs of grandma. After she finished her call with Scott she asked, “Is grandma not upstairs?” Her thoughts will bounce around for awhile after a big group gathering. She eventually remembered that her grandmother had passed away but became anxious for a bit that she could not remember any of it. Her grandmother’s funeral was early in our married years. I could not help her remember but we did settle on her calling her cousin Barb to find out what happened to grandma Moeller. (Today as I write this I notice that any and all of that anxiety is gone.)

Trying to keep up with conversation with her siblings is exhausting for her. They are catching up and joking around. This activity takes her back to her childhood and young adulthood. The small child screaming at random intervals seemed to add a nuance of grandchild. Her mom was there too. She was in the house on Phillips Avenue and we went home downstairs to where Aunt Jean lived. These were confusing thought patterns.

And eventually we both went to sleep.

Today after I took her to exercise class, Cheryl ate the leftovers that she brought home for lunch . She suggested that we go back there for dinner or lunch again. We will. They have food that Cheryl likes. Suggesting that we go back is a big endorsement from Cheryl.

I might get a different bier though.

Sadly this room was decorated with weapons of war or krieg as the Germans would say. All in all a good family visit.

Carpe the schnitzel Diem.

Scrambled Eggs

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This was a strange morning so far.

Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.

After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.

After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.

When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.

I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.

I made her scrambled eggs at 2 AM.

After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.

It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.

Carpe the breakfast Diem.

Tonight for the First Time

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Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.

I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.

Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.

Eventually the little girl left us. I did not ask where.

Cheryl did not invite her for ice cream. We had that for dessert.

Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.

In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.

Carpe Diem.

A Capgras Night

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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.)

We Had a Frank Discussion

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We had an open and frank discussion about me, my death, if it was okay to date, how I died or was no longer here, Capgras Syndrome, how it was that her mom died, and other topics. I explained “impostor syndrome” and that I was not dead. it took a lot for me to not openly cry as I began to understand her terror at not knowing what was going on around her.

We talked about our love for one another. I told her I would never leave her alone or as best I could not let her miss anything important. We talked about memory and how scary it is to not know what is next.

She was anxious about being home but not thinking she was home. In the midst of that our upstairs neighbor, Joe, bought me a couple cans of beer. A couple days ago we were discussing an article in a local magazine about the best microbreweries in the area. He had found some of the stuff that won.

Cheryl added Joe into the discussion about how she and he were working on the same project at the house. We went around and talked about going home and Joe had brought her home last night. I said that when she woke up she was home? Even though when she went to bed last night she was not home? Yes she said.

I explained to her once again that we were home even though she was unsure that we were home. (Another nuance of Parkinson dementia). Capgras can occur with things and places also. In Cheryl’s case it happens with time.

She knew she was home now.

She seemed calmer afterward. It wore her out and she went to bed early and was okay with me helping her to bed.

Carpe Capgras Diem. (but what a miserable fucking disease.) (sorry)

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

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Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.