Foolish Man.

It was a less than brilliant idea of mine. We are backing into full on Christmas shopping mode. Today as we left her exercise class Cheryl asked, What should we have for lunch? Usually she is asking what sorts of leftover foods are in residence in our refrigerator. While I am stalling to think about what is in the fridge I asked her if she wanted to go to lunch in our favorite diner. She said yes.

Our neighbor works at this little lunch place in our little town. Carrie was working this day and we chatted and caught up for a bit. We had lunch and Cheryl mentioned that she thought there was something she needed to shop for but could not remember what it was. I was my helpful self and reminded her that she wanted to get some new slippers. I had bought her some Minetonka moccasins a couple years ago online and she had worn them enough that they were getting beat up. I suggested that we could find a shoe store and look for slippers. (FOOLISH MAN) I found the nearest Shoe Carnival and after checking online discovered that they had a couple varieties of lady’s slippers to choose from. (Why do I make suggestions and eventually order for her in a restaurant and never transfer that information to other similar situations. Why?)

I am taking her to a shoe store. (foolish man) Their slippers are in the back near the clearance racks. Foolish men think that they are going to zip in, get some slippers that fit, and slip out. That is why they are referred to as foolish ignorant men. Part of the X that men do not get at birth lies on the 27th chromosome near the end – SHOPPINGFORSHOES – the shopping sequence genome. The combination of the leather, vinyl, foam and cardboard pheromones commingle to trigger this gene sequence into action. It is remarkable that even a dopamine deficiency can be overwhelmed by this gene to enable the lame to walk with confidence. All balance issues disappear. A study should be made about this phenomenon.

I realized that I had taken her to a place that was significantly worse than a restaurant menu. I gave in and helped. We rejected with sadness all four-inch heels (although there was a woman my daughter’s age there shopping nearby that looked good in them.) Also rejected were those with pointy toe boxes on them. Too much toe repair to fit in that configuration any longer. Cheryl has walking shoes, some slippers and a couple pairs of Easy Spirit black flats. She has no lighter beige/tan/sand colored shoes if she is looking for “something different”. She wanted to think about and make a list of candidates for later. I suggested I could take pictures of the boxes to save for later. She replied that’s a good idea. After an hour and a half we left with pictures, notes and slippers.

Foolish man.

Carpe Diem.

Embrace It

In her blog, Cheryl Hughes, writes that many times it is better to “just let go”. She spent many years as care partner for her husband.

I have decided to do that in many ways. If I decide that we are having salad for dinner,  I buy a bag of salad. Salad kits are available.  It is way easier than chopping stuff. And there is enough for four typically so if you want lunch the next day you are good.

It can cost a little more but what is the harm in embracing the changes as a care partner. My Cheryl believes that Christmas is any minute now. Until a week or so ago I was resistant and felt the need to correct her thinking. What ever for? Why generate artificial stress? She will not remember being incorrect, she only remember that I think her to be wrong when she is certain that she is correct. I could embrace the fact that Christmas is next week and we should put up the decorations.

We got a catalog from Amazon which is unusual by itself but it has kid’s toys in it. I cynically remarked sometime ago about getting Raggedy Ann for our daughter and Anna chided me with – I am totally okay with Raggedy Ann! It could be fun. Between decorating actions my Cheryl searches through several cookie options in the Cheryl’s cookies catalog (too many Cheryl’s in this story) and looks for the perfect Christmas cards in the Printery catalog. Sometimes she is telling me about cards, sometimes cookies. What could be the best one or two? Of each?

The Christmas elf is sitting in the chair ready to help Santa. HO HO HO is on the front door. The little wooden Santa is falling off the closet door. Knitted Santa is on the clock. The inside of the front and side doors are decorated so that Santa cannot get in without being noticed. The decorations are moving along nicely.

Eddie bear always gets booted from his seat next to the telephone. He lost his telephone long ago. He seems to be okay with the rocker and he has a place to hang his elf hat.

Anna makes me smile as I think about it and she is right.  It could be fun to shop for gifts for the kids and grandkids. Perhaps I should embrace it. What difference is it if Christmas is a months long event? So I told myself a few days ago that we would go for it.

Now that the decision is made, we should be shopping for the kids.

We need to find sizes or which toys suit which kid best. Laurencia likes puzzles and building things. Virginia is crafty and plays trumpet. Vinny likes Lego kits. Gavin is into online gaming. Regan is off to college next year. Audrey is a dancer. Ellie? Dillon? Luke delivers pizza but his passion is photographic art. Lots to think about. Have I forgot anyone? I have got to find Raggedy Ann for Anna. Yep, lots to think about.

Cheryl has powerful childhood memories about the holiday season. There were many good times, parties, family gatherings and fun. Perhaps it is time to make some new ones.

Carpe Diem.

7AM and a Funeral

In an amazing amount of support for our dear friend Linda, Cheryl was able to fall asleep and stay asleep over night. She slept well and this morning she awakened to the 7AM alarm put out by the loud and annoying alarm clock. The past few weeks she has trained herself to ignore it.

Diana, Linda’s sister and very special best friend, left us last week. Visitation for friends and family happened yesterday evening in the afternoon. I thought that would be enough for Cheryl. On the way home from the funeral home we stopped for a bit to eat. Between mouthfuls of hamburger and a review of the dessert menu she told me that she wanted to go to the funeral tomorrow. I reiterated the fact that the funeral mass was across town and at 10AM meant that we would be leaving the house at 9AM. No matter she said she wanted to go.

I told Cheryl she would have to trust me that I would get her up and moving in time to make it. It is very important that you sleep well overnight, I told her. She said she would and she did.

This day is to remember Diana Sehlhorst. Diana came to our condo a couple times. Once after her husband Dan passed away Linda was having a conversation with her about moving to a smaller place. Linda did that after my cousin Frank died many years ago. Linda bought a condo as part of an old home overlooking the Ohio river. Ours is a newer building overlooking the trees in the back and a great view of the sunset across the valley from our parking lot in the front. Diana was looking at options. What she eventually selected was way different than both of those.

I wrote the event on our calendar and posted it on the morning erasable board. I got Cheryl up, helped her to toilet, found her comb and glasses. I went off to get Frosted Mini-Wheats as requested. I asked again if she wanted to go to the funeral mass. Cheryl insisted that she still wanted to go. We left in good time and Google maps guided us to the back of the church property because that was the swiftest way there (allegedly). I navigated my way around the block to the front of church.

Sitting in church waiting for the start of the ceremony I noticed that even at a sad event as a funeral some folks naturally smile. Even with despondency, tiredness and family sadness smiles appear. Little children make older folks smile. Diana had many grandchildren. Not everyone is capable of smiling at somber events. I think that I am not. Even in death there is rejoicing. The comment, “She’s in a better place.” is a tribute to death as a state to aspire to. Funerals sadden me.

We arrived in good time about twenty minutes ahead of the scheduled start. As the ceremony got started and Diana came by in the casket, Cheryl needed the restroom. As Diana came in we headed out to the restroom in back. And we forgot the purse.

At communion Cheryl told me she did not want to go up for communion. After the restroom we sat in one of the rear pews. St. Lawrence church is a long narrow building constructed in the old form of shaped like a cross. It would be a long walk. I went to communion , collected the purse on the way by our previous pew and returned with host. I broke it in two and gave her half. She said, amen.

Diana’s son at the end of mass delivered a small discussion of a lesson he learned from his mother in his impressionable early teen years; If everyone gives 100 percent it’s easier to meet in the middle. Words to live by, I think.

We came home and Cheryl had ice cream for lunch.

Carpe Diem.

In the Morning

In the morning after she has had her meds and has had something to eat and has been up for a little bit, she seems like her old self for awhile. It’s different on different days but this day she is like her old self for an hour or two.

It is interesting and calming to me when it happens. We have little teasers in the morning. I ask her if she wants coffee. She says no. I don’t drink coffee. She used to drink tea but she has not for several months, maybe a couple years. But I always ask her still.

When we were still working for someone else it is how we started our day. She never drank coffee in any form. It was how I got through college and everyday since. I stopped using sugar in about 1974 or so as a protest against the sugar industry. I am able to remember when sugar was ten cents for a five pound bag. I have not seen five pound bags in our little IGA for some time.

Cheryl always drank tea. I have some year-old tea bags in the pantry. Occasionally I will drink tea. Iced tea in the summer is pretty good. Dad used to drink iced tea. I think that I drink iced tea in his memory.

These days Cheryl drinks orange juice with breakfast whatever breakfast may be. Nothing else is satisfactory for breakfast. No milk, no coffee, no tea only orange juice satisfies.

In the evening and on this particular evening she wants to go home. She seems to understand that she is home and somehow not home as I explain why all her pictures, papers and clothes are here. She will say, yes but I want to go home. My heart sinks when she says this. It used to make me panicky. There is no answer. I explain that we are home already and we will sleep here. If she wants we can go home tomorrow. That is okay with her but sometimes we have to call her sister to tell her where we are overnight.

In the morning she had been so much like her old self. In the evening she is different, unsure of where we are, uncertain of who I am, and wants to go home. The ups and downs and general upheaval in the same twelve hours or so of wakefulness is remarkable. Parkinson is scary stuff. (Some would say “shit” but I will not.)

…And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

– Desiderata by Max Ehrmann

I am not convinced, Max.

Carpe Diem.

Too Little Too Late

Sad words of defeat and disappointment

Disgusting words of skeptical cynicism

Throwing in the towel in defeatist mysticism

Certain that you are beaten

But wait something did change

A small difference, a tiny deflection, a glimmer of light

A sliver of hope, a glimpse of a dawning

A view of the next phase is within range

It may have been too little too late

To do nothing is neither a little or late

Doing nothing is an abatement, acceptance of defeat

Sad words indeed

Too little too late

These thoughts jumped into my head the other day when I was reading a comment from Cheryl’s cousin. It is often used as an epithet. The follow up question of “what would you do?” often merely raises tension instead of being treated as a valid entreaty for knowledge.

Life is complicated and rarely in sharp contrast.

Carpe Diem.

When She Says Thanks

When she says thank you, I respond with you are welcome.

When she tells me, I’m sorry, I respond with you do not have to be sorry.

We have these conversations all day long. I started this blog post after reading and responding to the Facebook post shown here. I suppose I have not thought of this before but politeness and kindness are very basic to the whole care giving, care partnering thing.

For many months earlier when she was dealing her dementia and before we monkeyed with her meds and bought a new bed so we can sleep better, there was a lot of tension between us at night and this sort of conversation did not happen.

This disease is a displeasing feeling in one’s posterior. Injecting calm and kindness makes the day go easier. (And the night.)

Tonight she is following three different cookie recipes to make something that she is going to use tomorrow. So far I see butter and eggs in the bowl with some sugar. Earlier I was thinking of forcing my help on her. In mid-force I decided what the hell. I can throw away the butter and two eggs tomorrow. Pretty cheap solution to calmness in the household.

Carpe Diem

I get Lots of Newsletters

This one – The Criminal Intent of Parkinson’s jumped into my email from parkinsonsdisease.net. The writer Dan Glass makes a great point. The premise of Parkinson’s will not kill you but you will die with it – is the perfect example of a distinction without a difference. He uses funnier tongue-in-cheek language than me.

Falls are Scary

Falls can occur anywhere and for any reason to anyone but parkies struggle with balancing; those tiny muscle motions that keep our center of gravity over our feet and heels. Parkies with dementia struggle to remember and use the techniques taught by the physical therapists.

For me as care partner, I am guilty of getting overly upset and excited when I watch Cheryl move around without her walker in our condo. We have a standard looking walking frame for use inside our house. She is using it more but learning is individual and until she wants to do it exclusively or feels wobbly enough, it is not habit and I will have to gently nudge and remind her. Her retort is often, you are always telling me what to do. I guess I am. I fear for her safety. We have a U Step walker for when we leave and go anywhere else. She is used to having it with her but sometimes she will walk around it to get to the garage and into the car. I give her a reminder nudge.

She fell two times this week. I hope this is not a omen. Both in the bedroom doing various activities associated with daily living. The first time our niece Natalie was here cleaning and I was in the bedroom collecting towels for the Wednesday laundry towel load. My perception is that Cheryl was backing away from the dresser after getting something from a drawer. She passed behind me and landed on the floor to my right. As I watched she bent her knees and collapsed on the floor.

I showed Natalie how to help her up by getting a wooden chair to place near her and hold on to stabilize the chair. Cheryl knows how to get up. She maneuvers to get her strong side (right) under her and then pulls on the chair. Sometimes she sits on the chair for a bit to rest.

The second fall happened while she was folding shirts on the bed a couple days later. I had dumped the laundry basket onto the bed and she became interested in folding the laundry. Fortuitously she fell onto the bed sort of face first and did not bend her glasses.

Pneumonia

Aspirational pneumonia is something that I worry about with Cheryl but her cough reflex seems strong for now. I listen to her when she coughs. It does not seem deep or struggled. She does seem to be drooling more.

Angst

Coming from the care partner point of view raising tension between cared for person and care partner person seems at best counter productive. Sometimes saying, “Let me know if I can help” is more calming and useful than barging in to take over the situation. When I think about events that have occurred along the path of this journey with parkinson I tell myself that over and over. Many times I listen to myself. It is easy to carpe the angst of some situation and slip into know-it-all pedantic care giver mode. (Lately i have been catching myself and stopping mid-lecture.)


And doing the best you can to continue with a life not driven by Parkinson is hard work. There is extra laundry. There is extra equipment. There is extra travel time. There is extra time associated with any social event. There is disrupted sleep associated with any specific morning time event. There is menu confusion. There is mental confusion. There is resistance to help sometimes. Nevertheless, as much as you are able to do it, live life.

Carpe Diem.

The Saddest News

Or what woman, if she had ten drachma coins, if she lost one drachma coin, wouldn’t light a lamp, sweep the house, and seek diligently until she found it? When she has found it, she calls together her friends and neighbors, saying, ‘Rejoice with me, for I have found the drachma which I had lost.’

Luke 15:8-10

In December of last year I purchased a chain of gold for Cheryl to put her 25 year wedding band and her engagement ring onto and wear as a necklace. She had complained for months that her rings were falling off her fingers. She wanted a chain to put them on.

The woman who waited on us at Effler’s Jewelers smiled when I told her what we wanted. I told her to think high school and a senior ring on a chain. (The memory makes me smile. Cheryl is my high school sweetheart, my prom date, where I am home.) She tried it on and pronounced it good, maybe perfect. After a week or so she determined that the clasp was a bit too tiny for her numb and shaking hands to manipulate when getting it on and off her neck. We returned and the jeweler was able to attach a larger clasp. Later she discovered that she was able to ease it up over her head without unclasping it.

She unconsciously would touch her rings and put her fingers through the rings while the chain was around her neck. It would occasionally become tangled and knotted. With another trip to the jeweler I was trained to unknot delicate gold chains. (wooden tooth picks work great) The occasional dissension broke out about wearing it to bed at night. Eventually it was carefully placed in the special box that came from the jeweler originally. The placing in the box became a nightly ritual.

As time went on she added a couple other special rings that she had in her jewelry box. For the past couple of months she has been wearing it with four rings.

In October of this year they are lost. A few days ago as we were traveling somewhere, I noticed that she was putting on a different necklace and I asked her where her ring necklace was and she said, “It’s in my pocket.” I now suspect it was not but at the time I thought nothing of it.

I know that I should not feel guilty about the disappearance of the necklace but I do. I suppose it is the care partner, the 50 years of marriage partner, the help mate, the one who panics most when she falls, the one who is not losing their memory – in me. I feel like I have let her down. I have made it my job to keep track of her stuff and mine.

Tony! Don’t be a phony. Help us out her. THE NECKLACE IS GONE.

Carpe the St. Anthony Diem.

the necklace is BACK!

Update: The necklace is back. It was recovered from the chair she is sitting on. Moral of the story – Don’t make the disease harder than it is. Sometimes stuff just falls in the crack between the cushion and the arm of a chair. (Sorry Tony. You are not a phony.)

Carpe Diem.

Parkinson Hacks

When did the term hack get substituted for coping strategy? This is an unimportant question that jumped into my head watching the morning newsy show. The gentleman was talking about traveling and airfare and airline scheduling nuances to guarantee getting there on time and not have any trouble. He shared his ideas for traveling early on Thanksgiving day and traveling home Friday. Getting back in time to watch football for the rest of the weekend. He could have FaceTimed his family that he did not want to visit for long. It could have saved a lot of time and money. (That is a hack.)

Wouldn’t it be great to make a list of hacks for Parkinson and his damned disease? He found it. Why did he not write a manual? Even written in the flowery English of the 1800’s it may be of use today. Nevertheless if he published other than his observances to the medical community (The Shaking Palsy – An Essay), I missed it. Parkinson describes a shaking motion. Today his name is associated with a wide range of symptoms, behaviors both movement and cognitive.

In our support group meeting on of the topics posed was “Share one piece of information, a coping strategy (hack), a motivational thought you wish someone had shared with you when Parkinson disease first made an appearance.” I have several and it has taken me a long time to learn them.

Cognitive

Often but not always a person dealing with Parkinson will have cognitive issues in addition to movement issues. These can come in many forms; hallucinations, sensing others, detecting others presence, odd beliefs with little knowledge, delusions, lack of time sense, lack of calendar sense (day), short term memory loss, aphasia, to describe a few. When you detect this happening in the person whom you are helping – Don’t argue. It is very easy to fall into the trap of trying to correct things. Remember with memory loss everyday is a new day.

For me this is an ongoing learning experience. I do use argument (not quite the right term – dissension? – justification?) as a method of attaining her focus because when she is mad at me she is completely focused on what I am saying to her. Often that is when I am attempting to prevent a fall or a near fall. She wants to continue doing something that is to my mind unsatisfactory, bordering on dangerous with her worsening movement control.

I do not do this often because the side effect of having her angry with me can last until bedtime. Sleep I have found is refreshing to her in a way unlike nothing else.

Meds

As a care partner it is extremely important to control meds, medication timing and to observe any issues or effects of the meds. Is this new behavior due to her worsening Parkinson or due to the new med or aging in the old med? It involves lots of reading and observation.

Whenever a change is ordered or a new med is added, the care partner must become observer and research assistant.

Checking activities

Check, check, check on things. A task that might take ten minutes for a non-Parkinson could easily take three times as long. Allow for that when planning activities no matter how small or how large. Parkinson time is different that regular clock time. Many diversions can creep in. In fact scope creep has to be tamped down continuously. (A trip to the toilet can easily morph into putting on a whole new outfit.)

Providing Help

Interfere and help. She may not want your help. Help anyway. Apologize later for helping. Do not help before it becomes apparent that she is truly and hopelessly stuck. Mentally she might think that there is hope yet and she does not need your help. It is also possible that she will not remember you helped. Just help.

Social

Generate social activities for yourself and your partner. Go out to lunch. Go out to dinner. Visit friends and family. Take walks in the park. As much as your are able look for or create on your own opportunities to be outside and exercise. Seek out exercise venues that cater to people with movement issues. (Physical therapy is one to one. There is very little social interaction.) Specialized exercise classes are far more social.

Socializing in general stretches the brain and often requires dual activity such as eating and talking. Walking and talking in a park is an excellent form of this socialization and has a third benefit of giving the body a chance to make vitamin D. Multitasking is hard for the Parkinson brain.

Caring

You have to create a network of care. You may think you can do it alone. You cannot.

Attitude

Don’t give up. Choose to be happy. And seize the moment.

Don’t be shy – lower your expectations of people

Ask for direct help. Rarely do people when asked for help say no. Usually they say that they cannot right now. Follow up and ask when they can. This can be difficult.

Carpe Diem.