Why don’t you like me?

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!”

To which LAJ responded… “I thought it was going to about a caregiver who thought their husband didn’t like them anymore, which is what it felt like before I knew what was happening due to the frozen face that seemed to glare at me all the time😟”

WHY DON’T YOU LIKE ME?

“When did it start?” the doctor said “The hate campaign that’s in your head”

It started out with a little thing A parcel neatly tied with string

I couldn’t get the knot undone It really wasn’t too much

The problem very quickly spread A champagne cork encased in lead

Just pull the corner, plastic tag It’s just like opening up a bag

But heat-Sealed cartons won’t comply They tear or shred, I wonder why?

They should open up for me Not stay tight shut. It’s misery

It cooks in minutes on the pack But opening it, I’ve lost the knack

It doesn’t work I can’t get in, This thing is going in the bin.

I’ve stabbed it with a table fork Tempers rise, I cannot talk.

Have all these packs developed hate For me no meals, note the date

But all my efforts are in vain Four broken nails what a pain.

I’ve tried with other simple things 10 pound note develops wings

It floats and flutters then it sighs. I’m out I’m out it loudly cries

It won’t go back without some force All my notes have changed their course

Why do all things hate me so? Why won’t they just go with the flow

Is it old age that treats me thus I can’t go on I’ll make a fuss

Coordination is the key Its making such a fool of me

Filing papers opening mail all tasks that I can fail

It was my mother that I told You take too long, it’s cause you’re old

Parkinson’s is such a sod For my old back another rod

I’d change the duvet if I could My fingers seem to change to wood

The pillowcase will not comply It really makes me want to cry

Zips and buttons stubbornly Are never like they used to be

Sometimes it really makes me laugh I seem not whole I’m cut in half

The half that works has disappeared The other half behaves quite weird.

It moves and shakes all on its own It will not do the things It’s shown

My life is turning into farce And Parkinson’s can kiss my arse

Written by…. John Smith

Alternative inspiration

A caregiver’s blog led me to another Caregiver’s blog when he wrote: Whenever I am looking for alternative inspiration I read this blog.

https://parkinsonscaregivernet.wordpress.com/

Here are a couple excerpts from some of her entries.

……………………………………………………….

Less nagging – yes, I used the word nagging. Reminding. Warning (“don’t put your cup so close to the edge of the table”) Advising (“you need to use your walker”) Mentioning, emphasizing, etc. (Yes, I used the thesaurus!) Our loved ones will begin to tune us out when we talk too much. How about this – let’s talk less and do more. We can always walk over and move the cup away from the edge, and we can take the walker and put it in their hands without even saying a word. It may mean we have to DO more, but we can do it with a smile that promotes peace.

With decreasing cognition comes the loss of ability to reason, so we should not be surprised that our loved one is less able to cope with anxiety and frustration. That knowledge helps us understand the need to keep them from certain situations where those things might occur. We do this out of our love for them and self-preservation!

Not for Everyone

A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?

I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.

So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.

At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas?
What are the advantages of moving into a nursing home?
1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied.
2. You won’t have to clean house.
3. You won’t have to do laundry.
4. You will have physical therapy available.
5. You will have activities available.
6. You won’t have to remember when to take your meds.
This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself.
Before you go, be sure to pack your activities
Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop.
1. Your cellphone & charger.
2. Your laptop. (Check to make sure you will have internet access.)
3. Your coloring books & colors.
4. Your music & something to play it on – headphones or earbuds are best.
5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device.
6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather.
7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather.
8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes.
9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each.
10. A good grabber for reaching things.
11. Paper & pens & pencils & pencil sharpener.
12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember.
Things you will Not need:
1. Furniture
2. Knick knacks
These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them.
Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it.
Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.

Oven wisdom

It seems only prudent of me to turn the responsability of putting items in or out of the oven to someone else who has better balance… since I do most of my falling when I lean over. Like last Wednesday, I leaned over to comfort our shepherd, lab mix by putting his ‘Thunder shirt’ on him, and found myself sitting on our closet floor.

I enjoyed reading this post from the AdjunctWizard’s Blog

My Own Reaction Surprises Me by AdjunctWizard. She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.She agreed.We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)Scary activity for someone not steady on her feet.I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.

Tips and Tricks

Steve, of American Fork wrote:

7:55 AM and I had _almost_ slept through the night when the phone rang. I failed to get it or even locate it on time. Then I remembered: It was delivery day for the new flooring for the basement apartment. That was almost certainly the delivery driver’s “courtesy call” meaning he could be here in minutes. . Panic. I tried to orient myself towards the garage, but couldn’t. I was still meds+ 1/2 hour away from being able to turn at will. Then, instinctively, I kicked my shoes off and went on my way. As I had done a thousand times before. Whoa! Does anyone else ditch the halting component (at least temporarily) by taking their shoes off? Maybe something to add to the “Tips and Tricks” section of your Parkinson’s owners manual

Advocate for yourself

I cry too easily, I can’t read anything aloud, with even a hint of sadness 0r stress or I start to cry and then I can’t talk… I am a silent cryer. When I attend a reception line at weddings, I cry. When we would watch a tv show as a family, the children delighted in catching me crying over silly things, and reminded me that it wasn’t real. I told them my bladder was simply too close to my tear ducts. I have never been depressed. I am the eternal optomist.

I appreciated the sentiments expressed by SilentEchoes in a forum I follow: She shared…..

“Pathologic tearfulness (emotional incontinence) is a disorder of emotional expression rather than a primary disturbance of feelings.”

“It’s not you – it’s your brain injury. I cry easy – too easy. I often lose credibility with the doctor when it happens to me. The imbalance of power in the exam room is very real.”

“A neurologist told me that the fact I was crying in his office was evidence of mental illness. When we left my husband said, we’re never going back to that a$$h*le. When you understand what is going on in your brain, you’re better equipped to advocate for yourself. This is much harder to do in the early phase when you’re baffled by the weird stuff you’re experiencing.”

“Gaslighting and psychological abuse is never okay; and especially not in the context of the medical setting.”

“Emotional incontinence is not associated with depression, impulsiveness, memory impairment, or executive dysfunction.”

“Pathologic tearfulness is not a manifestation of psychiatric illness, it reflects abnormalities in brain networks that control emotion regulation beyond the hippocampus. The condition may be present in other neurologic disorders, this article provides novel insights into the neural basis of affective control and its dysfunction in disease.”

https://n.neurology.org/content/94/12/e1320

“The more you know the better you can advocate for yourself.”

Service Animals and Decisions

I found this on the PdCure.org site: Services an animal can provide are:

  • emotional support and companionship
  • help maintain a walking rate of speed or gait
  • prevent freezing by pulling gently on the walker
  • pull a wheelchair
  • help promote exercise and daily walks
  • if equipped with a harness (shoulder mounted, not back), can provide stability to prevent falls
  • get help after a fall
  • aid with manual tasks like removal of socks, picking up items, retrieve the morning newspaper, retrieve hard to reach items, open doors or turn on lights

To learn more about PD service dogs and view a couple videos showing training and how they support people with PD go to this link: Service animals

I have over 400 blog posts saved in my drafts. When I typed Service Animals into my site search to see if I had already addressed the subject, it pulled up this wonderful article which came out of the 2018 World PD Congress. Since it was still in my drafts, I chose to combine into one post to share with you.

PROCRASTINATOR OR PLANNER? AT THE CROSSROADS

Are you by nature a planner or a procrastinator? As a clinical social worker in a PD Center of Excellence I work with people with Parkinson’s (PWP) and their care partners at critical crossroads of decision making, it is challenging to balance planning ahead versus staying focused in the present. My social work training and decades of experience help me appreciate that how and when we take action in the PD arena, is similar to how we behave in other arenas.  So, back to the opening question: do you tend to be a planner or a procrastinator?  Are you unsure which category you fall into?  Perhaps that’s because we don’t fall neatly into these discrete categories.  However, we do have styles and patterns for how we make decisions.  Consider these different strategies in planning a dinner party. 

The planner, weeks before the party, consults many cookbooks and online recipes and may try the recipe out ahead of time.  Planners will try to set the table a day before and does food preparation as far ahead as possible.  When guests arrive music is playing and appetizers are plated. 

The procrastinator decides to see what looks good at the market and will base the menu on that, shops for what is fresh and enjoys the excitement of trying something new. If there is last minute preparation, guests may be asked to put on an apron and help out! 

One approach isn’t better than another. The planner may feel more pressure to have all aspects of the dinner well-orchestrated.  The procrastinator may be more adventurous and is known by friends and family for spontaneity.

A great deal of humor is used regarding these two groups of individuals.  Some relevant quotes for planners: “A goal without a plan is just a wish” and “By failing to prepare, you are preparing to fail”.   And for the procrastinators there is humor.  For those who tend to delay there are these adages: “Tomorrow is often the busiest day of the week”, or “If it weren’t for the last minute, I wouldn’t get anything done!” and consider this one, “If procrastination was an Olympic sport, I’d compete in it later!” As is the case with all humor, joking is a way of coping with stressful life situations.  We also know that black and white categories usually don’t hold true.  In the case of procrastinators or planners most of us have some characteristics of both personalities.

The purpose of this blog is not about shame or blame for planners versus procrastinators! Rather it is about looking at how different styles for problem solving affect critical life decisions.  In my clinical work I am often asked by people with clients is it “too early” or “too late” to plan for lifestyle changes related to the diagnosis?  We know that from the moment the PWP hears the words “You’ve got Parkinson’s” life is dramatically changed.  There are cascading decisions that begin as one leaves the physician’s office after the diagnosis is made.  Questions arise such as:  when and how to share the diagnosis, should I continue to work, is driving safe, should I move, when do I explore hiring help at home and how early should I have the difficult discussions about end of life.  That is a lot to consider; fortunately there is usually time to carefully consider options.  Also, it is definitely the case that one size does not fit all.  For example, in the case of sharing the diagnosis, a younger patient who is still working, has very mild symptoms and has young children may make a different decision around disclosing the diagnosis than an older person who is more symptomatic, retired and has grown children.  Eventually, the diagnosis is shared; hopefully once shared the PWP and care partner reap the benefits of garnering important emotional support and practical help.

Let me review in greater detail one decision that is somewhat more complicated than sharing the diagnosis and often a topic for discussion with clients. “When do I need to think about a move?”  This decision brings even strong people to their knees!  Who can forget Dorothy’s famous refrain, “There’s no place like home” (The Wizard of Oz).  Attachments to home run deep; we associate home with raising children, important relationships with neighbors and the neighborhood, family holidays celebrated in the home and that intangible feeling that “Home is where the heart is”. 

There are many factors affecting the decision to move.  The commitment to remaining at home and adding home services, as needed, may work out well.  However, the decision about moving is often motivated by safety.  Older homes with stairs may present safety risks, especially for someone who has a history of falling.  Moving may be related to “downsizing”; part of a process that many begin to consider once children have left the home and the upkeep of the older house becomes a burden. Moving can bring the PWP and care partner geographically closer to where adult children are living. Or, a move to Retirement or Assisted Living helps for better access to supportive services when these are needed. But, there can be many barriers to moving.  I am not surprised when clients tell me, “There are just two things that keep me from making a move: cleaning out the attic and cleaning out the basement!”  The emotional and physical work of a move and cleaning out decades of accumulated “stuff” can paralyze anyone. It is a surprise for some to discover that efforts to “downsize” can mean paying more for a move to a smaller but newer home, condominium or Retirement community. So, how does anyone with PD accomplish this larger than life task?

There is a lot of downside to not planning for this important transition.  The process can begin early.  Some clients talk about starting to clean out closets and the dreaded basement and attic slowly.  Ask for help from adult children, especially since the clean out may include many mementos from their childhood (for example the cherished soccer trophies, or the bag of stuffed animals nobody could part with).  Professionals can be hired to assist with the actual cleaning out of belongings.  They are skilled at not letting the process get bogged down in emotionality, yet sensitive to the process of “letting go” of things (big and small).  A geriatric care manager can help think through the important “where” of a move. 

Friends and family can play an important role with this, too. Creativity is important!  One client moving from a large home to a one floor condominium planned a ceremony to bestow blessings for her new condo.  Following her Jewish traditions she gathered close friends to say the Shehechayanu; a prayer celebrating special occasions. She and her husband wanted more emphasis on the sweet than the bitter of this move.  I ask clients to think about other transitions they have made and we consider strategies they used to get through those difficult times.  It is likely that what helped in the past can be helpful now.  Finally another important tip in surviving the emotional turmoil of a move is to understand that with any transition it is normal to experience a sense of loss over what you are leaving. We all cling to what is familiar.  What we can’t know in making a move are the benefits in the new living situation.  Following a move, one can feel liberated from all of the clutter and “stuff” from the prior home.  A new living space that is accessible, promotes independence, reducing fall risks.   Or, there may be new social opportunities of a move to a retirement community.  If the move puts you closer to family, visits can be more frequent and spontaneous.

While I chose to focus on a move as a major life transition, there are general guiding principles that can be helpful at any decision crossroad:

  1. Don’t worry alone. Involve others as you consider options for change.
  2. Support groups can be lifelines at decision crossroads. Every member of the group is an “expert” and can share wisdom and experience.
  3. Gather information. The best decisions are made with facts; not driven by fears, fantasies or misinformation.
  4. Ask for help! You can do anything, but you can’t do everything.
  5. Ask members of your health care team to participate in helping you think about changes. How can the team help the PWP maximize independence, while balancing safety considerations.
  6. Pinpoint the obstacles for making change and then brainstorm solutions.
  7. It’s ok to get “stalled out”; we all need a periodic time out. But then figure out how to get back on track.
  8. Decision making is usually modifiable. Consider the metaphor of using a pencil and eraser in your planning (you probably wouldn’t use a pen to work on a crossword puzzle!)
  9. Don’t let perfect get in the way of good enough. Often a good enough plan is a starting point. Waiting for the perfect plan can be a trap.
  10. Keep humor in your back pocket. Remember these wise words: “He or she who laughs, lasts”. Laughter can be a great coping mechanism.

The ongoing task of care planning in the face of PD is challenging! But you will get through this. I talk with clients about spirituality. Prayer and belonging to a religious community can be important for healing and connection. But I use a broader approach in conversations about spirituality.  I ask the question, “What gives you strength?”  A rich discussion usually ensues. Strength, for some, is garnered by being in nature, or music can help one transcend stress, others turn to gathering the family for ceremony and celebration. There are so many ways that each of us find to cope and remain resilient.  Think about what has given you strength in the past and tap into those resources as you find your way. 

https://www.worldpdcongress.org/home/2018/8/14/procrastinator-or-planner-at-the-crossroads

The question was posed…

What would you like for Non-Parkinson’s patients to know? P

I have included a few of the responses that seemed representative of other PwP. Being a PwP, I acknowledge, just because you have seen one Person with Parkinson’s, you’ve seen one Person with Parkinson’s. No two people have the exact same combination of symptom’s. I noticed not very many people mentioned drooling. For me, if I could cease drooling, I’d know we were on the right track. Sue. …………………………………………………………………………… “First, our increasng klutziness (knocking over water glasses, slipping on the pavement, missing the chair on the way down and ending up on the floor, etc.) are not due to carelessness or ignorance, or lack trying to avoid an accident. A PD patient’s brain is  just not working at 100%. It takes a miracle of interconnected sensors, brain control centers, eye-body coordinatio, and so on, to walk straight and do other “ordinary” balance tasks, but the information channels between brain and muscles is faulty. Please note that we feel much more humiliated by our own inability to put the dishes in the dishwasher quietly than anyone else who is saying in a scolding voice, “Can’t you be more careful??!!” Robert

  • I completely agree with the comments above!  I think it is very important for others to understand the variability of PD.  Each person’s journey is different, and for that one person we focus on, the journey for that person is also extremely variable.  One day (or hour!) may be very different from the next.  I choose to consider PD my adventure.  I never quite know what is in store for me.  That can be positive as well as negative; if I am having a bad day, I know that tomorrow may well be wonderful.  The non-motor symptoms give me more trouble than the ones that are visible, so I think I would want someone who does not have PD to believe us when we say we can’t do something on any given day, even if we were able to do that yesterday and may again be able to do that tomorrow.  I am blessed with family members who understand that, making it much easier for me to take each day as it comes. ” Marlene

“If you are living with PD (I am loath to say “suffering from”) you probably recognize the not so subtle suggestion in the responses that the non-motor symptoms of PD are often the most devastating part of being a club member.  I still cringe when family members and friends say “…but you look so good.”  Yes, I too have motor symptoms, but Sinemet is a formidable ally in the struggle with most of them.  For most of the motor symptoms I can tolerate the situation by finding workarounds or thinking my way through a situation (e.g. how to button a shirt) or setting up modest, achievable goals (working in the garden in 15 minute sessions).  Since everyone who knows my condition recognizes the characteristic motor issues of PD, I need only do things slowly to indicate the reality.  But the sleep disturbances, absence of restorative sleep (Occasionally I need 12 hours of sound sleep only to wake up exhausted), fatigue, brain fog, anxiety, depression, voice changes (which have made me difficult to understand), etc.  are far more the thieves of life which are not visible to others. When I am asked how I feel, I respond with my immediate sense but always add the caveat that the non-motor symptoms are the true torture.  I then provide a litany of those symptoms.  I also add the fact that the social withdrawal which is also a reality of this condition is more due to the non-motor symptoms.” Bonanno

‘My reactions are totally different to Bonanno‘s. When someone asks me how I am, I actually smile/try to smile depending on the day, and say ” not too badly thanks, how are you feeling?” I realize that when someone says ‘how are you’ it is just a way of saying hello.  They actually may be concerned but it is not their fault or problem that I have PD.   It is certainly not my fault but it is my problem, and I really don’t want to burden them with my hassles, that is, not if I want them to remain my friends.   I know they care, and that’s what counts.” Clive