Caregiver Stress

A Day that will Live in Infamy

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Looking back from the afternoon towards the morning I have to laugh a little.

Cheryl’s doctor is still adjusting her meds. Trying to sort out sleep issues, depression issues, hallucination issues, movement issues and other Parkinson dilemmas takes time. In the meantime sleep is illusive. Last night I got the message – quit taking the quetiapine for sleep. So I did not give her the quetiapine.

This morning I got the message, the doctor has communicated with the neuropharmacist and reviewed all the other stuff she is taking. Start giving her the quetiapine 75 mg for 5 days and then 100 mg from then on. The nurse practitioner will check back in two weeks to see how it all turned out.

That is counter intuitive. 75 mg is twice the original amount of quetiapine that she was taking. After I finished reading all that I went to check on Cheryl. She was awake as she had slept poorly but quiet enough that I slept like a stone or at least a stone with a two-teaspoon bladder capacity. Overnight I sensed that Cheryl was awake but she was not talking gibberish which happens sometimes when she dreams out loud. I fell asleep easily after getting up a couple times. (God, I hate old age.)

We decided on waffles and fruit for breakfast. She ate her pears and part of a waffle and disintegrated into a coughing nausea fit which caused her to quit eating anything else for awhile. As that died down a bit, my cousin-in-law called with a long explanation about why she was unable to participate in Pizza Tuesday tonight.

Linda told me a story about her upstairs neighbor’s incompetency, water leakage and associated repairs. I started to think my life was not so bad at least my building wasn’t falling down around me.

Cheryl decided that she wanted to lay back down for awhile. I helped her back to the bed room and the bed. I then returned to the kitchen to finish assembling a new pot of coffee and wait for the next activity. I turned on the kitchen tap and a tiny trickle came out.

When I had the kitchen remodeled a few years ago I opted for the super faucet that I only need to touch somewhere to make it come on. It was a $300 option but it was extremely handy over the years. It is a battery powered system and the problem that presented itself told me the batteries needed to be replaced. Alas! I found new batteries and did that. Still no water! I called the plumber. Micky listened and told me that they have had a couple failures but she was sure mine was still under warranty and would check to see how long to get parts and call me back.

I took my coffee pot to the sink in the utility room for water. The sink in the utility room was running very slowly. WTF? Did we have a water main break? I called the Greater Cincinnati Water Works generic hold number and the robot answer-er asked if I wanted to discuss my bill. No! I replied. and eventually was connected to queue manned by a single human. This is similar to going to the post office to buy stamps at the wrong time of day. While on hold i decided to go look for my Amazon package that the driver had beeped my door buzzer about earlier. The package was leaning on my front door which led me to look into the front lobby of our condo building. The front door was propped open by a plumber who was working on the new neighbor’s condo up stairs. I tapped on her door and grumped long and loud about turning off the water to the building without warning anyone. — Turn about is fair play; she grumped loud and long about someone stealing her ladder when she was moving in which did not happen. The painters thought it was theirs and realized their mistake and put it back in the incorrect spot.

Someone had mismarked the main water supply which comes into the building as the cutoff for the second floor condo not realizing what they were doing. Our new neighbor’s water shutoff valve was hiding behind the water heater. The plumber figured out where it was after we complained about the water being off. He got bad information from a resident that was not here. Who knew?

I later apologized to my neighbor about raising much ado about nothing.

In the meantime Cheryl’s head is off in lalaland.

Sleep would be a good thing for her.

It is Pizza Tuesday.

Carpe Diem.

Hope-aholic

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Interesting concept.

Watching the early morning newsy shows yesterday a guest mentioned this concept. The word stuck with me because I think all care partners are just that – HOPE-aholics.

Hopeful the incontinence will be less or gone.

Hopeful the memories will not completely fade.

Hopeful that she will be less anxious in the evening.

Hopeful that she will think she is home at night.

Hopeful she will sleep peacefully overnight.

Hopeful she will walk better with her left side.

Hopeful she will do her speech exercises.

Hopeful she will remember who I am during the day and into the night.

Hopeful she will not be afraid of what is to come.

Hopeful, always hopeful, she will be fine with staying in a respite situation while I travel to visit my sister.

Hopeful that I will not be anxious while away.

Hopeful that she will eat more.

Hopeful that she will not lose more weight.

Hopeful that visitors will make her days busy while I visit my sister.

Carpe hopeful Diem.

Time for a Change

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One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.

More on Expectations

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I did not mention previously that I have greater expectations of myself than anyone else around us. I tend to focus inward and make all things that go badly my fault.

Fault is something that a catholic education will drill into you. Recognizing that humans are weak in many ways is something catholic education ignores.

“… And if you should fail in this, humble yourself, make a new proposition, get up and continue on your way.” (Padre Pio)

I am feeling disappointment in myself today.

Carpe Diem

A Quiet Monday

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My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Palliative Care

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Today we saw the doctor whose clinic is concerned with palliative care. After a long discussion about drugs, symptoms and what the palliative care clinic does the conversation turned to what we hoped to achieve from it. My hope is for better existence for Cheryl. She has trouble vocalizing her hope.

From the National Institute on Aging — (NIOA) — the next couple paragraphs are useful general information. The doctor’s question hit me spiritually, what are we expecting? It is a good one — What are we expecting? A cure? Return of mental acuity? A better attitude about living with one’s plight? More mobility? A stronger core muscle strength? — A flood of thoughts entered my mind.

What is palliative care?

Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.

Who can benefit from palliative care?

Palliative care is a resource for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson’s disease, and many others. Palliative care can be helpful at any stage of illness and is best provided soon after a person is diagnosed.

In addition to improving quality of life and helping with symptoms, palliative care can help patients understand their choices for medical treatment. The organized services available through palliative care may be helpful to any older person having a lot of general discomfort and disability very late in life.

Who makes up the palliative care team?

A palliative care team is made up of multiple different professionals that work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is comprised of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains. A person’s team may vary based on their needs and level of care. To begin palliative care, a person’s health care provider may refer him or her to a palliative care specialist. If he or she doesn’t suggest it, the person can ask a health care provider for a referral.

Why (a conversation with myself, often) is palliative care necessary and useful? What benefit will come from this method of viewing Cheryl’s worsening Parkinson and her associated dementia issues? These are my thoughts.

Since the beginning of this road all I have wanted is for Cheryl to be safe, comfortable, mobile, and as independent as she is capable. Seven years ago, just before we purchased this condo that we live in now we lived in a neat old five bedroom, two story house with a basement. It was a hundred plus year old house with much space and character. Cheryl’s main complaint was her knees. At first I moved her office area downstairs to the front bedroom. We called it the guest bedroom and sometimes “your Mom’s bedroom.” I rearranged the use of the other extra bedrooms upstairs. I remodeled one and took over Cheryl’s old office upstairs as my own. The upstairs bathroom was accessed through the office. The home office was moved to the guest bedroom downstairs as was the rest of her equipment – sewing machine, computer things, printer, etc. but Cheryl had adopted the upstairs bathroom as her own and regardless of where she was maintaining a presence during the day she went upstairs if she required the facilities. (The hallway to our big bedroom in our condo she now refers to as upstairs or downstairs as her Parkinson and memory issues worsen.) She complained about her knees everyday until we moved to our flat single floor living arrangement.

During the seven year process of moving, adapting, adjusting I put her needs first not thinking about or recognizing what those adjustments would do to my emotional and physical health. Not once did I think about how my life would change when Cheryl gave up driving voluntarily when she could not remember where she was or where she was going. Nor did I realize that she was starting into her creeping memory issues. A couple months later when she became terribly upset and anxious one evening because she could not find $1.89 mistake in the check register that she was still computing by paper and pencil, I did not realize that she was struggling with cognitive issues in addition to memory issues. Her math and logical sequencing was gone or mostly so. She did not admit it to herself or to me and I did not recognize it. (notice – cognition in recognize) It was perhaps two years later that she was unable to follow recipe instructions or sewing pattern instructions. (I found myself reading how to reverse an item so that the seam allowance was hidden.) In retrospect she was probably terrified that she could no longer do those things. She was in fear of losing her mind and it caused anxiety.

My hope or expectation is that she will achieve some level of relief from her anxiety. My hope is that she will sleep more comfortably. My hope is that she will accept her disabilities that inhibit what she wants to do and she will ask for and accept help freely offered by her spouse (me).

My hope is that I will be more comfortable with letting her do for herself as much as she can while she can do it. Whatever it may be. My hope is that I will find the strength and the financial means to provide for her future care. My hope is that I will plan activities and be cognizant of the fact that plans will change without warning and I will not rage out loud when it does not go my way.

My hope is to be able to let go once in awhile for my own mental well being. I hope that this group of clinicians can help with living and life. But mostly I hope to get a good night’s sleep most nights.

Carpe Diem.

Why

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Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.

Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.

This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!

Carpe Diem

Like Drifting Sand – some days

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Friday – Happy Friday. We have gotten to the end of the week, almost anyway without any major disasters. This was therapy week. Cheryl’s doctor suggested that she might benefit from PT, OT and ST. Those are speech therapy, occupational therapy and physical therapy in reverse order from my listing of initial abbreviations.

These were the initial visits for evaluation of where she is currently. She did this last year. This disease of Parkinson knows no schedule or any sort of time table but my overall observation of Cheryl is that she is deteriorating at an incredibly slow rate. She is nevertheless deteriorating. I put her in a transfer chair in the morning to take her to the toilet and then later to the kitchen table for breakfast. Eventually she is able to maneuver herself around without my help.

No one dies from Parkinson’s disease, they die with it. Some days however their care partners seriously consider cliff jumping without the necessary safety apparatus. (Sarcasm)

The mundane rigor of it all juxtaposed to the chaos is draining. Perhaps we all need to talk more.

The occupational therapy appointment was at 3:45 PM. The facility is handy. It is about a 10 minute drive from our house to the Drake Center. Cassidy asked Cheryl lots of simple questions about where she is physically and what she did with her day. Questions about cooking, cleaning, sitting and standing. Cassidy also preformed some simple strength and agility testing. Cheryl only misspoke once or twice about her role in the household chores.

My grand plan for the day had been to visit the OT expert and then move on to the Board of Elections. More about the Board of Elections later, but the scheduled appointment to the occupational therapist was almost foiled by a trip to the restroom. At 3 PM I suggested that Cheryl visit the toilet – just in case – so that we had time to make it to the OT appointment at 3:45 PM. Only 5 minutes away but there is that “Please arrive 15 minutes before your appointed time” that medical health services always ask you to do for them. (What makes them so special?) Nevertheless I try to abide by their scheduling rules. Parkinson raised its ugly head and said, “bathroom! Now!” After a little bit of argument we managed to get to the appointment at 3:45 PM. Sadly, there was no 15 minute breather.

In Ohio there is a statewide ballot issue concerning the way we modify the Ohio Constitution. The leg-ups and self-righteous in control of the state government are annoyed with the fact that the OMG’s and the gracious are so easily able to call them to task by proposing a constitutional amendment and forcing them to defend their positions in public. Never mind the fact that graft and greed in the form of direct payment for votes has caused the leader (Householder) to be visited upon by the Feds with gaol (old English) in the offing. The amendment process has survived the rise of the special four who attempted to write themselves into the constitution as the only ones to cultivate cannabis in Ohio if it became legal for recreational use. (I wonder if bars will have special places for them with the tobacco smokers?) So, in the end, the process probably does not need to change.

Early voting at the BOE was not in the offing, however, The OT appointment went longer than I had expected. I do not know what I was expecting. The early voting office closed at 5 PM which was about 4 minutes before we got there. So, after a series of snafus we finished at one of our local pizza stores which was located across the parking lot from the Board offices.

Pizza is a go-to for Cheryl when she cannot decide on anything else. We have often come to this particular pizza palace after church on Saturday evening. We succeeded in landing a table at the empty restaurant at 5:16 in the afternoon just as the skies opened up with a late afternoon thunderstorm. It is Ohio and late July. We enjoyed our pizza and drinks and sat to watch the storm wash our car in the lot. When it came time to leave, Cheryl announced as she often does that she had to visit the rest room. All sorts of things zip into my head when she makes this announcement. Mostly there is a flashback to the many less-than-satisfactory trips to public bathrooms. She refuses to recognize that she needs help more than merely occasionally in the ladies room. I have been in many over the past few months and yet I think she is unconvinced that any help is required. (So I sit and wait to see if she can get back through the door with her walker and seethe while I do it.) Public bathrooms and their cleanliness and the equipment or lack there of is often the main topic of the drive home conversation. (Not the quality or the enjoyment of the food.) It is no doubt just me and my internal opinion but often it seems she is acting like a newly toilet trained child who needs to try out all the toilets they come across because they have this new found ability.

We left the pizza store and drove to one of our favorite soft serve ice cream places for dessert. She wanted to use the toilet there also but theirs was marked closed for repair. I wonder how they get away with that with the health department rules we have.

When we returned home, she spent many hours sitting in her office touching and reading her cards. We eventually went to bed at midnight. She seemed to know where she was then although she had spent the better part of an hour in our from guest bathroom. (Lots of bathrooms are in this story.)

She awakened today at 9:30 am. Spontaneously! I attribute that to a new medication her neurologist prescribed along with the OT, PT and ST. He felt that some if not all of her sleep problems were due to smoldering anxiety and depression issues.

After breakfast and after getting cleaned up and dressed we had a funny little discussion.

“When did I get involved in this play? Who was that girl that put me in it?”, she asked after we had discussed the weather and Jill’s Christmas in July party tomorrow. I thought she was kidding about her situational awareness of her disease. I was wrong. She believes she is in a play that may never end.

All the world’s a stage,
And all the men and women merely Players;
They have their exits and their entrances,
And one man in his time plays many parts…

As You Like It — William Shakespeare

Carpe Diem.

Today – Is it Christmas?

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Yesterday evening when we went to bed she told me that today she wanted to put up the Christmas tree. My response was sure tomorrow is a good day for that. She slept undisturbed overnight.

Earlier after a breakfast of pancakes and fruit she told me that today she wants to put up the Christmas tree. We have a niece who has a party theme of “Christmas in July” around her newly rehabilitated back yard pool. (Jill lives five doors north of Sherlock Holmes. For those who read Sir Arthur you can deduce her address.) I have been keeping Cheryl apprised of the decorating progress as Jill has posted pictures on her Facebook Party page.

We went to Jill’s party last year. Of course we will go again this year. I will not remind Cheryl about her idea to put up the Christmas tree. I want to see if she remembers it for a longer period. (Overnight does not count. She often remembers her dreams from overnight.) And to be honest about it I do not want to put it up. Only I will be doing it and I have to rearrange furniture to do it.

So today I will live in terror of having to put up the Christmas tree. Or I could embrace it. The jury is still out.

Carpe Diem.

It is a Messy Disease

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Cheryl never likes it when I suggest she should take a shower. She accepts that information as me telling her that she stinks. She does not but I keep track of how often she washes herself in the shower. She can no longer remember that information. So, when I ask if she needs any help taking a shower and getting cleaned up and she snaps at me, I ignore it as I am able to do.

It hurts occasionally and I react to that sometimes but I feel in my heart she does not recognize the hurtful comments she makes sometimes.

Another “goal” is to keep her safe and not walk away no matter the vindictive.

Carpe Diem.