Love and Life

Big New Bed Delivery and Nighttime Bliss

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The big new bed was delivered yesterday. I thought that I had paid for the removal of the old mattress, box springs and the bed frame. Apparently there are tiny variations in the language of such agreements that I did not realize and was not privy to. When did furniture or any purchase like that become so complicated. Even though I asked the salesman – Can you guys remove the old bed? – what he checked off and I did not question was – “Removal mattress and box springs – $99.00.” I forgot to ask about something that I knew nothing about. I should have asked, “And the old bed frame, headboard and footboard too?” He would have responded with, “That’s an extra $50” to which I would have said okay. Once I am making the switch lets go for it. It served us well for fifty or so years. It is merely a bed. It has no particular sentimental value. I remember when we bought the whole bedroom set thinking to myself, that is a lot of money ($1600 in 1979). Beyond any of those thoughts it has served us well. It is time for it to go. It does not fit our Parkinson life.

The mattress and box springs left yesterday. The headboard, footboard and frame assembly went into the garage. There is a lot of useless crap in the garage, like, I suppose, everyone’s garage. On another day I will rid myself of useless crap so there is more space in the garage. I will probably not paint anything in the condo on my own so why am I keeping old paint brushes? I also have an electric hedge trimmer. We live in a condo complex that although it is small we pay to have mowed and landscaped and trimmed. Useless crap it is.

Alas, we were probably the last delivery of the day. The young men were on the way out when I asked lets see how you left it. I asked them to move the bed about a foot closer to the doorway of the bedroom so that it was basically in the same place as the old bed. they did as asked. The delivery included a sheet set and I had purchased a set of mattress covers from Amazon as well as a quilt and shame set and blanket. The install team left me with a queen size mattress protector which I was not expecting but again, had I realized it was coming, I could have checked that the correct thing was delivered. I did not check that fact. The queen size mattress protector still sets on the dining room table awaiting the delivery truck to bring to correct item (which is probably not on anyone’s delivery list for today.) I am waiting to see how this all works out.

I am not perfect either! I ordered the correct size blanket from Amazon but I incorrectly ordered a queen size quilt. Woe is me. Amazon now uses Wholefoods Market for returns. There is one about two miles from me. It was a painless activity. Perhaps I will return to shop there. It is an alternative to Kroger which was there when the building was first put up and then got mired in some developer default controversy about ten years ago. Kroger moved out. The building was eventually completed. I do not know if the crane operator was ever paid. The crane stood idle along the highway for about a year while everyone traded paper and shouted at each other in court. Now it is where I return my oopsios to Amazon and there is a store that sells stuff to store stuff in. America has a lot of stuff. (Sorry I digressed.)

The first night was wonderful. Cheryl did awaken me to help her in the middle of the night but that was after she had gotten up to go to the toilet. I did not feel her get up.

After I got her up at 7 am for her first meds, she fell asleep deeply until I awakened her at 8:45 am. Bliss.

Carpe new bed Diem.

How Many Things Change

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It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

Lists, Wishes and Trips

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Today sitting in Anna’s house chatting, Anna told her mom that today was June the fifth. Did Mom know whose birthday was today. I thought, shit, I forgot to write that detail on the white eraser page that I put on the kitchen table in the morning. And I had lost that fact also. I have been so focused on Cheryl and getting some activity for her each day I lost track of my own son’s birthday.

Cheryl always wants to make a list so she does not forget something. How does one even begin to write a list of things or events not to be forgotten when one cannot remember what is to be on the list?

That is a tricky question. It is hard to remember what you have forgotten or maybe did not know at all.

Another subject for a list is the places and people we need to visit . Maybe we have not seen them in person for awhile. there are many people that we have not seen in person for at least two years. I did travel to see my sister about a year ago. We attended my nephew’s wedding in California. It was hot. It was fun. My brother-in-law, my nephew’s father, had brought along his fiance to the celebration and for some arbitrary reason she blew up and their wedding is not happening. Cheryl is working on a list for visiting folks. My nephew and his new wife are expecting a baby very soon.

Should she ever get her list together I will make every effort to figure it out. Planning trips is hard. Cheryl needs a lot of extra equipment these days. The new U-Step walker, although it folds, is better transported by a pick up truck. She is much more steady behind it.

Carpe Diem.

Past Few Days

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The past few days have been sleepless and disturbing. Cheryl has one of her meds that she has been taking for a long time seems to be bothering her at night and not allowing her to sleep. As we sleep in the same bed on the same mattress I do not get much rest either.

Two nights ago I gave into the thought that it was her Sinemet CR tabs that were both helpful overnight and disturbing her sleep. I discussed it with her and she wanted to try taking only one tab for overnight. She slept until about one o’clock and got up to go to the toilet. She came back to bed and slept until the seven o’clock alarm for morning meds.

Wow! Could it be that easy?

Last night we did the same thing. She did not get up at all. I had a little extra laundry to do in the morning but I did it with a full night of rest.

Now it is the weekend which should be a time to relax and rest but we have little to do on the weekend calendar. I lean on my kids. Cheryl has been talking about the kids all week. If I can I take her to visit.

My first thought is my son David. He has a wonderful backyard to sit and visit. My plan was to visit on Sunday but as we drove to our favorite place for a walk Cheryl said she would like to visit David. I had told her as we were driving along about visiting David tomorrow afternoon. Somehow that translated into today in the afternoon. I called David and he said sure.

We took our walk and sat on David’s back patio the rest of the afternoon.

Maybe tomorrow afternoon we can find Max’s ballgame and visit Anna’s family.

Carpe Diem.

Paul

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Cheryl – Paul?

Me – Yes?

Cheryl – When you see my husband Paul if that’s tonight or tomorrow…

Me – I will see him tonight.

Cheryl – Tell him, I love him.

This was one of those conversations in which I am not me. They used to disturb me. Now I just go along.

This was our conversation as I helped her into bed. It was a little early. She complained of being very tired and went to lay down at 8:30 pm. I took her the bedtime dose at 9 pm. She was not asleep yet. I had previously promised her that if she was asleep already I would not wake her up. We would just figure it out later.

Carpe Diem.

Observations of Lack of Sleep

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Scott was here last night to be with Cheryl while I visited my stock club meeting. The fourth Monday of every month is the meeting of our little stock club. We started this little club in 1984. Over time we swelled to 20 members but the past few years attrition and death has shrunk our number to eight. And over the past few years the meetings are more social than business. Where else can eight old men get together and trade war stories about getting old, fortunes missed, grand children achievements, the proper temperature of beer for drinking, Parkinson’s disease, prostate problems, cataracts and hearing issues, but in the backroom of a local watering hole near a railroad track? It is always fun and over the years I have rarely missed it.

Before I left for the meeting Cheryl’s stomach was bugging her a bit as happens occasionally after her 4 pm meds. When I returned I asked her if she had eaten anything. She said yes but behind her Scott shook his head no. She answered my question how she thought I wanted her to answer it.

Eventually about 11:20 pm we went to bed. Over night she was fidgety and got up at 2:30 a.m. to make a list so she would not forget something. I sat her at the kitchen table with subdued lighting and with paper and pencil she worked on her list.

Her list is a business memory. I sat with her and about 3 a.m. she decided to sleep some more and finish later on. Buzzing around in her mind these days is the thought of creating a database of birthdays for the people in her family. Many times and in many instances she has started this task. Just like engineers this thinking starts with a pad and paper. Often sketches are made to indicate data flow and information input. Just like an engineer Cheryl’s notes switch back and forth from cursive to printing. And although she had an urgency about this activity in the very early morning hours, she had no ideas about what it was or what it was for in the daylight hours.

She seems so fragile to me in the morning lately. She is still working on the remnants of some dream as she awakens. This morning she got up and went into the bathroom. I got up also and put clothes on, got some coffee for myself and turned on the CBS news to see if any new wars developed or any movie stars got divorced overnight. About 20 minutes later I went back to check and see if any help was needed or if there were any special breakfast requests. She was seated on the closed toilet waiting for someone to bring more toilet paper. I showed her where the extra rolls were and asked if she wanted cereal for breakfast. Yes was her reply. I returned to the living area.

About ten minutes later I went to check again and she told me she was still waiting for someone to bring toilet paper. The thirty minutes of database design time in the middle of the night messed up her waking pattern.

More and more she seems to have a slow switch from early morning confusion to present. I have not found a solution to any of this confusion and delusion. I listen to her conversation and make a lot of rapid decisions about how to respond. If it seems like she is getting ramped up about someone coming (that I know is not) I try to gently steer her toward the correct thinking. If she is getting fired up about having a family gathering I merely agree with her plans.

On this particular morning she was concerned about whether David was going to show up any minute to cook the Thanksgiving turkey. It took several repeated conversations about date and time but eventually she seemed okay that Thanksgiving day was not today. Over several hours she came to the conclusion that she should take a shower and get ready for her exercise class. Over those same several hours I planted various seeds of the idea about taking a shower and looking for exercise clothes to wear.

Me and how I feel – It is wearying for the care partner to both console and encourage and direct and deflect her delusions and my own background anger (too strong a word – disappointment?; discouragement?; vexation?) with her brain and how it is operating with PD. My question – Why can’t she have the movement issues without the mental disability? (God are you listening? Why her? She has always been a sweet person. Why did you dump this crap on her?)

Observations about my reaction to her needs – (Shit! Not again. This is the same conversation we had 15 minutes ago. whiskey tango foxtrot.) How can I help dear? Cheryl – you can’t help. Perhaps not but let me hold your purse for you while you get out of the car.

Is this genuine love? … To have and to hold from this day forward, for better or for worse… Those where part of the original agreement. Too late to back out now. She looks so sad and distraught when she realizes that she needs me to help her up from the chair because her scoocher is busted. It is heartbreaking.

Carpe Diem.

For the First Time Early this Morning

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Cheryl went to lunch again with a friend yesterday. Barb had arranged a luncheon with another member of the church decorating committee. (See my previous post)

They were gone for a long time about five hours. When Cheryl got home we talked for a bit and she went to lay down. I think she actually fell asleep for about thirty minutes. Or, at least, she was very still for a while when I went to check on her about an hour later.

In the evening she declared herself tired a about 10 PM and she went to bed. After a few preliminaries she was laying down at about 10:20. I remained up to read as I usually do before retiring. When I came to bed about thirty minutes later she was still when I laid down.

At 1:30 AM or so she was restless and awake. To the bathroom she went. I helped her a little with the toilet because she has confusion and balance issues in the middle of the night. She lamented that she really needed to sleep but she was fidgety and agitated. Nothing I could do seemed to help. I began to think that my presence was disturbing her. She couldn’t get comfortable.

She stayed in our bed. I got up and opened our sofa bed in the living area. I had never slept on it before. It was a new purchase we made with the mad money that we got from the federales during the height of the pandemonium. After a couple false starts and finding a blanket and my pillow from our bed. I fell asleep from 2:30 until about 5:32 AM when my bladder reported fullness to my brain. That is a much longer span than laying with Cheryl fidgeting her way back to sleep. The sofa sleeper itself while not perfect was quite comfortable to sleep on.

I will have to study the living room area floor plan and think about things some more. I had to rearrange furniture in the early morning hours to open the sofa sleeper. That was a little inconvenient in the dark.

Perhaps we are at the stage of her disease and our lives when we will need different sleeping arrangements.

Alas and Carpe Diem

More AHA Moments – Boats

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Cheryl told me she is scared to be on her brother’s boat.

Recently Cheryl’s youngest brother invited her and the rest of her living clan and clan-in-laws for an evening ride on his pontoon boat that he moors in a small man made lake near his home in southern Indiana. I am always on the hunt for things to do with her that let her socialize a bit out of and away from our little condominium living situation.

Since Ken’s text message came to me on the family text chat, I told her what he proposed. Cheryl responded with, “I will think about it.” This is a phrase that she learned from her mother as a small child and she has used throughout our fifty years of marriage and many times during our child rearing years. Roughly translated it means “NO” or “no thank you.” But being the polite person that she is, she does not want to hurt anyone’s feelings, she rarely says no directly. (She also learned this from her mom.)

Cheryl has a lot of her mother’s traits. She does not want to put anyone out. She does not want to offend anyone. She can be angry with me as could her mother when she thinks that is appropriate, as when I am being pushy. She does not want anyone to stifle their good time by worrying about her welfare. She is okay with isolating herself to (her perception) benefit others. She enjoys the presence of small children even if the small children are unsatisfied and complaining about it. She enjoys the presence of big children and wants to be a part of their life even if the big children are uninterested in letting her in. She likes big family gatherings.

Most recently she has a new special Parkinson’s patient walker to help her move around with steadiness. After her appointment with her MDS neurologist on her birthday several days ago, I ordered this for her. In the picture is her new U-Step. I should have gained my AHA here since I just ordered this over the phone three days ago. (I am buying her a stabilized walker and suggesting we go on a boat that will wobble every time someone moves.)

U-Step walkers are designed specifically for folks with PD to give them a strong base to walk with and against

But, getting back on track, she said to me that she is scared to be on Ken’s boat. That is the first time she has ever expressed that to me.

AHA MOMENT – Occasionally these pop up and I cannot always understand her needs. Prescience is not a strong trait of mine. But imagine for a minute, here is a person with balance issues and I am promoting going on to a less stable surface than she is used to. She can lose her balance and fall backwards when changing positions in our living room. Our building is built on a slab. It is hard to get a more stable surface. AHA (you moron).

Ken caught on pretty quick and proposed dinner tonight on the deck at Willie’s restaurant next to the puddle (his term for the man made lake.) Tonight is anything goes pizza Tuesday. Willie’s fits into the anything goes part of pizza Tuesday.

We will go tonight and take the new walker for practice and hopefully greater stability.

Carpe Diem.

Once in a while the road seems straight even when it is not.

…

Friday the Thirteenth

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Friday the 13th comes on Friday this month. It is a little joke I have. An old boss of mine during my working career who is also a good friend used to make that comment when it was appropriate. It seemed to him that mystery problems would appear on Friday the 13th. Engineers love and hate mysteries.

A friend of Cheryl’s came to take her to lunch today.

I am waiting to see how it turns out. Barb is aware of Cheryl’s issues but we often only see her at church. Cheryl will have a chance to practice her “showtime” persona.

The lunch was great. Cheryl had a great time with a good friend and she brought home leftovers that she may or may not want to eat. The went to a Asian restaurant called the Blue Gibbon. Typically when we go to a Chinese or Asian restaurant she will order egg rolls. Nothing else for her, she only wants egg rolls which the restaurant people want to bring as an appetizer. No amount of english, american english, spoken to a person whose first language is not English can convey the meaning of “bring as her meal”.

The last time we went out to dinner at a Chinese restaurant (Uncle Yip’s) I ordered her egg rolls, some spring rolls for me and another dish that I like and I thought she would like. We had tea. The waiter brought the the egg rolls,spring rolls and asked if we needed more tea. Later he brought our shared dish. It worked out just fine. She was not embarrassed to eat ahead of me and she did eat a little of what I had ordered to share. The smart waiter brought us extra plates.

Uncle Yip’s, by the way, is the closest thing to actual Chinese cuisine that I have found so far. I visited China about ten years ago for business. And the owner’s and wait staff’s first language is not English.

Carpe Diem.

We Danced Last Night

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Last evening after dinner we danced for a bit.

Cheryl was going through a bit of confusion as I put dinner on the table. She kept getting up to look for her deceased sister Janice. (She called her Janice instead of “Jan.”) Eventually she was satisfied that Jan was not here to eat with us. She became interested in food and ate what I had cooked. (Chicken, noodles, green beans and broccoli)

I had put some music on the radio to play quietly while we were eating. Jimmy Buffet and “Margaritaville” came on when we were finished with the meal. I asked her if she wanted to dance. She said yes. We did.

For a few minutes we were young at a dance with Jimmy Buffet. Our dancing these days is more of a swaying-in-place but it is fun anyway.

A different time that we danced.

Carpe Diem.