one’s own health

Does Weeping Help?

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Some days it is heartbreaking to watch her struggling with some small task such as brushing her teeth. I find that if I merely get away from her line of sight that I am able to collect myself and not openly cry about what it means to me to see her struggling.

Then finally the meds kick in and she is no longer physically struggling but her head is elsewhere.

But does openly weeping help me cope? I think about that when it happens. This disease can and is very emotional and sadness is not the only emotion. There is love, anger, frustration, empathy and a greater range of nuance than I am able to express. Disappointment, fear, anxiety, hope, there are many. And everything is worse at night.

Some time ago it occurred to me that occasionally I would feel overwhelmed with our situation. It really did not matter what was the current overwhelming event. Name one; incontinence, memory loss, impostor syndrome, nostalgia and longing for what was, anxiety about the future, any one of those or all of those together. I felt a strong necessity to weep. So I did and tried to avoid doing that in front of Cheryl so that she would not be concerned. She seems unable to comprehend ours and her own situation. That aspect is the silver lining in her Parkinson with added dementia.

In my case sadness and heartbreak tends to show up when I am thinking about how to help her or reading some sage advice about how to respond to a situation that I felt poorly about how I reacted, and I am listening to a nostalgic melody. Michael Buble sings all Cheryl’s favorite songs, some of which are nostalgic to me also. (I avoid Michael for that very reason.)

It is often hard for me to talk about it to others. My voice chokes. I used to be embarrassed. (It is a man thing.) More and more I wonder if we do not do a disservice to young men by not encouraging them to show emotion in a healthy way. Men, not all but many, tend to suppress emotion in an unhealthy way. Later they lash out and do not know why. (Teachers call it acting out.)

Thinking about it, I can only remember seeing my father openly cry once. That was after getting news that mom had had a heart attack and needed bypass surgery. He suddenly realized how close he had come to losing her and he was overwhelmed. Dad was pretty stoic about most things. This one time in the hospital, however, the dam burst. Mom had also been pretty stoic about what ever pain she was feeling. She first felt ill on a car trip to Florida and Dad drove all the way home at her urging. I would have done the same thing. We learn everything our parents can teach us. (There are some very funny commercial messages that exploit this issue.)

If I have been holding on too long, I blast off at someone else. If it was you and you are reading this, please accept my apology and try to understand that I am my own worst enemy. If I choke up in some discussion about Cheryl, just give me a moment. Do not look away and feel embarrassed by my actions. I am not.

Carpe Diem

How do you know?

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How do you know when it is time for an extra care facility? Maybe it is time when she brushes her teeth with Noxema and is not repulsed by the taste?

Maybe it is time when a magazine arrives in the mail and she immediately takes it apart to sort and re-sort the pages into a file.

Maybe it is time if she suddenly at 12 AM becomes interested in calling her long dead grandmother to find out where she lived when she was a little girl and is inconsolable until she can find the phone number.

Maybe it is time if you recognize in yourself that much of your patience with God’s plan is no longer available.

Maybe it is time when she is no longer eating enough to sustain life and you begin to think that perhaps others may be more knowledgeable than you at finding a solution to nutrition.

Maybe it is time if you simply want to help her more than you are capable of doing.

Maybe it is all or none of these ideas. Maybe there are other thoughts that have crept into your mind as you realize how deep your love is and how shallow your skill set is.

Living apart will probably be as hard as living together for the first time when we joined ourselves in matrimony fifty-three years ago.

It makes me sad and anxious.

Carpe Diem

They Are Not You

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“… Don’t forget she’s in one piece and they aren’t you.” My daughter said to me in a text message after we had collected Cheryl from the place she stayed for a week while I went to visit my sister in Portland Oregon. (Great trip. Beautiful weather. Decent gin. Excellent wine. We never felt the need or desire to turn on the TV.)

A big part of this was a trial for me (and Cheryl). How would I feel about getting Cheryl into a 24/7 care situation? The place where she stayed in respite is a new memory care place. It is locally owned but not directly associated with any medical institution and not part of a bigger chain or group. How would Cheryl do there? It is a secure facility. Electronic locks on everything including the elevator. They do not let the visitors have a pass to the front exit door. You can be escorted by the nurse or knock loudly and the lobby receptionist will let you out. It is a memory care place. People can wander off at home but not there. That is not Cheryl’s problem.

Cheryl’s problems are numerous: dementia, memory loss, occasional confusion about space and time, Parkinson mobility issues, eating issues, hydration issues, yadda, yadda, yadda. Our life has been taken over by the evil Parkinson.

My thoughts are numerous. How would I feel about settling her in a place away from me? Would she get the same kind of undivided attention that I give her? Would she become angry with aides like she does with me occasionally? Meds and their schedule of delivery is paramount to a parkie. Would I want to micromanage the healthcare aides? Would the aides be pushy and encourage her to eat and drink like I do? Would I feel the need to be there every minute of every day? I have my eye on Bridgeway Pointe which is a place where my mother and her mother stayed toward the end of their lives. Is that the right place for her? Can they provide services for her? How to afford it?

Meditating and thinking about it is tiring.

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

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.

What are My Goals?

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My sister said that maybe I should reevaluate my goals for Cheryl. I interpreted that as not specifically goals but what am willing and wanting to do for her care. Considering myself and my health in that same equation.

Hmm, lots to think about there. Recently I bought a new transfer chair to help me maneuver Cheryl around various places that I felt were too far for her to walk. My original thought was graduation and parties. We had some of those coming up.

It was a convenient method of transport so much so that I opted to take it to Florida on our little trip and not Cheryl’s super-walker from U-Step. In retrospect it was both a mistake and a smart move. I did take her “in house” walking frame. She had support at night and in our rental condo. A beach wheelchair was free for the asking we merely had to make a phone call to the life guards.

I pushed her across the street to get ice cream a couple times. that would have been a car trip if I had not had the transfer chair. — Convenient. Getting her into and out of the ladies handicap bathroom/stall — INConvenient. Live and learn mom used to say. We will keep using the transfer chair. It is how I get her out of bed to the toilet to the kitchen. It works great for that. I have not had any back issues. She does partially support herself.

I have started to think — actually I have for some time — I need to get my act together before I start helping her get her act together. In that instance I am not in a hurry for me and I can be calmer (I am still not good at that part.) at least while I am helping her. I have learned to anticipate her moves.

When we were at the neurologist earlier this week he asked if we would like to talk with a doctor associated with their practice that specializes in palliative care. We will see how this all plays out. Are we near the junction with another road?

Carpe Diem

Clear and Calm

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Clear and Calm

The water is calm. The air is clear. It is a new day. Pizza Tuesday is here.

Every morning I spend a few minutes finding my center. Many call it prayer and I suppose it may be that for some but for me I think of it as centering.

Each day brings new experiences unlike the previous or the next. Starting in the center allows for movement in either or neither direction. One can go with the flow as the kids say.

This trip to the beach with family is centering me more than I originally thought that it could. Before we left I worried over small details and ultimately let go of some. Of course now that we are here I see a few details that should have occurred to me but did not.

Had I centered on Cheryl and her needs, I might have thought about some handy things that I have used to help her. I should have brought with us a couple more handicapped useful devices. I bought her transfer chair not realizing that her U-Step walker is just as important to her mobility. She needs her manicure kit to keep track of her finger and toenails daily. A handicapped toilet seat would have been a wonderful thing. (At home we have had seat height toilets installed. The toilet seat height is within an inch of the height of the transfer chair seat which is becoming more of the care partnering experience. )

But centering on her disease shifts the mood of the vacation holiday. It is a delicate balance between understanding and helping.

Centering myself at the beginning of each day provides a perspective and I deal things as they come up, not as how I want them to be or wished them to be.

Carpe Diem.

Inspiration, Thoughts and Ideas

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As we progress down the sad road of Parkinson and intermingled dementia I am always looking for ways to help Cheryl or get help for her and me. This web blog by Cheryl Hughes is and has been a source and an inspiration to me.

For the past few days as Cheryl has struggled through various mental clouds I have begun to ask about and look for trusted home health services. She is coming off of a UTI which I am getting pretty good at recognizing just by behavior. Some sort of mild sleep disturbing cough (thankfully not Covid related) has messed with sleep cycles for her and me. All of that is easing as the antibiotics have been used up. We are slowly drifting into our weekly sameness.

The past week of April has been beautiful in Ohio. On Tuesday I road my Rad City bike out of our drive onto the public roads. This is something that I have spent the winter gathering the courage to do. I rode around late morning to early afternoon on residential streets near me so that I did not have to deal with rush hour frantic antics. I greatly enjoyed my ride and although it was not long I realized that I was relaxed when I returned. My cousin-in-law was sitting in the kitchen with Cheryl having lunch and I was pleasantly fatigued.

It is time for me to get some consistent considerate help. It will cost money but there is that story about camels and needles that reminds me of my real responsibilities. Financially rich is not a good description of us but I am acutely aware that Cheryl’s care will cost more as time goes on. I may be too concerned about that but it is something I think about often.

Cheryl Hughes has pointed me to DailyCaring.com which is now sending me email newsletters. This website may prove invaluable as I try to learn more about helping Cheryl. Other friends have pointed me to a home care group that I will contact in the coming week to get established.

Carpe Diem

Shaking off The “What Ifs”

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Every once in awhile I get the what-if-I-did-this-instead-of-that in life blues (mood, meditation, discernment). They have been strong for the past couple weeks.

I suppose this winter has gotten me down more than previous. Cheryl seems more and more mentally frail as the PD/dementia progresses. I think that bothers me more than I want to admit to myself.

She has not seen the woman who lives in the corner of our bedroom for several weeks. Cheryl thinks her name is Jean but she is not sure of that.

The what-ifs instill a background anger. It is a sort of smoldering why-isn’t-there-a-fix mood. Perhaps it is time for me to find a shrink.

Therapy for me is to find a novel that captures and keeps my interest. I have never been one to stick with it if the story has wandered off into the weeds. Recently I read “A Man Called Ove” by Fredrik Bachman. It spoke to my heart and kept my interest. Ove was pretty down after his wife passed away but many of his neighbors kept inadvertently messing with his suicide plans and the story goes on from there.

Typically I read for an hour or two before going to bed in the evening. If Cheryl is awake when I come to bed I notice that she does not sleep well through the night. I let her sleep later and then feel guilty all day while I am getting her back onto her med schedule. And it creates anxious stress in me as I keep track of her medications more closely until she is caught up.

The medications only seem to work sorta.

Parkinson does seem to be endless and that starts to get me thinking about the What-Ifs again. There are no take-backs in this life but wow does PD suck.

I am hoping that she will get her earrings in in time for us to go for a walk in the sunshine today. I would help but that merely causes a spat. So far it is not looking good.

Carpe Diem. (And then she appears.)

Longing for a Different Life

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There are days when I long for a different life. This is one of them.

She did not sleep well last night.

She was more incontinent than ever before.

The shear repetition of care partner activities tends to grind.

Dementia can be debilitating. Those struggling with dementia do not know it.

Memory loss too. She becomes more frustrated as the evening wears on.

Conversation is tough. There are bright spots as stories are made up on the fly.

Delusional behavior is stressful for the deluded and the helper. Deluded minds have a different reality.

I suppose yesterday I was very tired. When she does not sleep, nor do I.

There was extra laundry in the morning and sometimes one needs to goof off.

There were extra things to do that day. I do not always feel like doing extra but it is still there to do.

It is relentless and constant. Relentless and constant.

So yesterday I longed for a different life and I do so every few days but yesterday it seemed worse somehow.

?

Carpe lament diem.