My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
I often find hope and inspiration in song and poetry. Today while reading blogs of others I tripped over this from Filosofa’s Word. Kermit and his rainbow song.
To me and I suppose many, poetry and song are the same thing. A song with a melody that is catchy enables a poor poem to live. A sweet expressive poem often needs no accompaniment. Sometimes the music is first and inspires the poem. Sometimes the poem is first and inspires the melody.
A favorite poem Desiderata sort of sums up life. It has no metre. It follows a prose format. I find it to be calming to my heart. I have not read it for a while but reading Jill’s blog page about caused me to do that today.
Carpe Diem and keep connected to everyone around you.
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.
Recently a classmate and friend of Cheryl passed away. Sister Mary Claire Hausfeld was not in Cheryl’s ICA class. Cheryl went to grade school with her and Mary Claire went to OLA high school. She found her vocation after high school. But that is not what I want to tell you about.
In a wonderful and well written obituary about Mary Claire and her life of service S. Delouise Menges writes about grace in Mary Claire’s life and how to recognize grace in our lives.
This poem by Marilyn Chandler McEntyre that Mary Claire used in prayer is a beautiful and touching meditation.
How to recognize grace
It takes you by surprise
It comes in odd packages
It sometimes looks like loss
Or mistakes
It acts like rain
Or like a seed
It’s both reliable and unpredictable
It’s not what you were aiming at
Or what you thought you deserved
It supplies what you need
Not necessarily what you want
It reminds you, you’re not in control
And that not being in control is a form of freedom
I have read this over several times and the line that strikes me most is “And that not being in control is a form of freedom”.
This life of Parkinson gives that statement new perspective. Little of our life is able to be controlled and I for one would like life to at least be predictable. It is not predictable either and that can be a form of freedom if you let it.
Frank, I know you are not with us any more and have not been for awhile but I suspect that like Google and Facebook you can watch us, so here is what I want to say to you.
Thank you ever so much for marrying Linda all those years ago when we were young. These days she is an immense help to me and a good friend. As you are aware, her simple act of kindness to Cheryl and me comes in the form of being with Cheryl while I go do something else. Lately that has been riding my bike around Lunken Airport.
When she first started doing this for us I had signed myself up for a care giving class which put great emphasis on making sure that you take care of yourself as a care partner. I asked if Linda could be with Cheryl during those class times and she agreed. I took the “take care of yourself” message to heart and make an extra effort to find help so that I can be on my own for a couple hours.
Since I am seeing Linda more these days, prior to this as you know we met for pizza Tuesday maybe four or five times a year, I think often about our conversations and ponderings in Aunt Dorothy’s kitchen. Do you remember some the questions we posed? How does one determine if sour cream is bad?, for example. I had not thought about it at the time but it was the same sort of thing that would puzzle my dad and I am guessing his brother, your dad. Sometimes small people would run through and we would wonder who they belonged to. Those are good memories. That entire older generation of our family is gone now. Aunt Bert passed away last year. But you know that. Have you talked to her yet? Does dementia go away when you get to heaven?
So, here is a couple questions for you. How are you doing in heaven these days? Is heaven a no smoking area? Is there a smoking section? Or did you give that up?
Did you know grapes are better when they are frozen? I learned that from Sarah’s Luke.
Ray and Shirley passed through town a few days ago. We gathered at Sarah’s house with as many folks as we could conjure up. Not all of your kids were there but some were. Betty and Herb came from Brooksville. Andy was not there but Kyle and Julie were. It was a great time. Ray took a picture:
This meditation has guided me through these last few months since I read it. I have edited it a bit for me personally. I try to read it and hold it in my heart each day. In an email from him, James Clear makes points about success, happiness, health, wealth and peace of mind. I try to use mindfulness as a way to reduce my own anxiety and understand what it is that any higher power may have in store for Cheryl and me.
Wealth is the purchases you don’t make.
Spiritual wealth is tied in no fashion to material wealth. Over time Parkinson’s disease has robbed Cheryl of her abilities to control and reconcile our check book. Through our entire fifty years of marriage she has done this family task. My interest was usually – how are we doing this month dear? Are we winning or losing? Her response was often – we are winning but it will be a little tight this month. She is frugal. Material wealth is not in our cards. Neither of us are risk takers. But over time if it is not important for one to have the latest, newest, nicest shiny new object enough material wealth accumulates to see one through to the end.
Spiritual wealth is more illusory. Spiritual wealth requires work. How can I do my best job to acquire more spiritual wealth, more inner peace? What sort of spiritual purchases can I avoid to gain or regain wealth spiritually?
Routine in life is calming to me. Routine provides a place for one to put your thoughts and displace the anxiety that arises from new PD behaviors. But lately, my routine is not my routine. New things seem to get added each week. Like laundry, which I never did in our previously un-parkinsons life. I have adapted to this addition. Friday is now laundry day for clothes. Monday is laundry day for the sheets. Wednesday was for towels and the like but I left this up to Cheryl because every now and again she would decide it was time to clean and part of that was to wash the towels. Over time with her parkie mind it became random. I suppose this is a new routine to be added. Service given freely to others, in my case, my wife, who needs my help provides an opportunity to gain spiritual wealth. Not purchasing the anger that arises from the constant tug of war between my way v. the previous (her) way can help with spiritual wealth. Remaining mindful of the mental fragility that comes with some PD patients may add to stress in a caregiver. Acknowledging that fragility, recognizing the tug of war, and then letting any stress or anger with the disease go often for me gives way to a bit of grief for what is to come and a calmness (acceptance?) of what is to be. This is a sort of meditation.
I think we all long for an easy road regardless of whether we are giving care to someone with a chronic illness or not. I know I do. I long for the pre-parkinson banter. The snide comments and the snappy comebacks would make us laugh. We spent fifty years becoming comfortable with that banter and learning how to push each others button and how to not do so.
From Sunday’s Gospel–MT 21:28-32; ‘What is your opinion? A man had two sons. He went and said to the first, “My boy, go and work in the vineyard today.” He answered, “I will not go,” but afterwards thought better of it and went. The man then went and said the same thing to the second who answered, “Certainly, sir,” but he did not go. Which of the two did the father’s will?’ They said, ‘The first.’ … after this Matthew wanders off into the weeds talking about tax collectors and prostitutes.
This is an odd gospel reading. The first kid responds as a teenager might — nope, not today pops. I’m hangin’ with the guys. Then he changes his mind. He does not apologize. He just goes. The second kid is a liar. Families are complicated. The first child is a reluctant helper. The second child is an asshat. I do not know where Matthew is going with this story and he does not tell us. He goes off into a ditch about the less desirable elements of any societal group.
Greater spiritual wealth is gained by doing for others without grumpiness about it. Lesser spiritual wealth is achieved by doing only. Spiritual wealth is gained in both cases. It is human to grump occasionally. Don’t beat yourself up about it but do not be a liar. Liars are below prostitutes in the social order and they are asshats.
Happiness is the objects you don’t desire.
I desire very little in life. It is a low bar but as long as the money and I run out at about the same time, I am good with that.
Health is the injuries you don’t sustain.
Exercise and eating your veggies add up to relatively good health. Stretching when you get “on in years” is a must. If it hurts, stop! Physical therapists will tell you that over and over. All good advice.
Find some sort of exercise that you can enjoy and stick with it. If you want to body build do it. If you are a runner, do it. If you are a dog walker, do it. If you are a stroller, do it. If you can do yoga and like it, do it.
Take care of your mental health. If you spend a great portion of your day caring for another or others, take time for yourself occasionally. When your grumpiness takes control it is time to go out and find balance.
Do not hurry your relaxation.
Peace of mind is the arguments you don’t engage.
Taking extra meds to fight side effects brought on by the Parkinson’s meds. It is an argument that is unwinnable even without the loopy logic of PD. Stay away from there.
Cheryl first; me second. It use to bug me a bit that she would schedule my time without warning after she quit driving. I became a built in Uber driver. I actually referred to myself as the driver — as in — Do you want to join us for dinner? My reply — Don’t ask me I’m just the driver.
Do not do that to yourself as a caregiver. You are in this too.
Someone else is using my pads. Virginia is making some sandwiches. She is taking care of the baby left here. … it seems that more and more Cheryl is slipping into her own reality. Trying to correct her thinking about what is real and what is delusion merely creates heartache and anxiety.
Avoid the bad to protect the good. — Stay off Facebook and avoid political crapola in your life.
Success is largely the failures you avoid.
Failure can be turned into success if one takes the time to learn from that failure. Life is rarely a straight line.
Thoughtfulness, meditation and mindfulness help to bring peace of mind. These are all different names for prayer.
Sometimes people you know do things for you purely from love and kindness and empathy. Say thanks to them. Often.
Dear Nancy,
Your gift of these words,
“ YOUR CROSS – The everlasting God has in His wisdom foreseen from eternity the cross that He now presents to you as a gift from His inmost Heart. This cross He now sends you He has considered with His all-knowing eyes, understood with His Divine mind, tested with His wise justice, warmed with loving arms and weighed with His own hands to see that it be not one inch too large and not one ounce too heavy for you. He has blessed it with His Holy Name, anointed it with His grace, perfumed it with His consolation, taken one last glance at you and your courage, and then sent it to you from heaven, a special greeting from God to you, an alms of the all-merciful love of God.”
from St. Francis de Sales mean more to me than you can ever know. I read this over and over several times.
This journey that appeared in front of Cheryl and me – Parkinson’s disease – occasionally tears my heart to shreds. At first, in the early years, she was the same as the girl I married many years ago. Recently, over the last two to three years I can detect a combination of mental deteriorations that often sadden me to the point where I get a powerful feeling of overwhelming dread. Lately I am greatly concerned that it will be beyond my ability to care for her in the not-so-distant future.
“… not one inch too large and not one ounce too heavy for you.” Believe me sincerely when I say that I wish I had your deep unbridled faith in something beyond you. And thank you for believing that I have that same faith.
I experience a wide range of emotional feelings mostly centered around caring for Cheryl. Sometimes it borders on depression. Sometimes I feel genuine rage and anger. Sometimes I envy others’ perceived good health. Sometimes I am deeply disappointed that Cheryl and I cannot do many of the things we used to greatly enjoy – she and I used to hike long distances in the woods, for example. And then sometimes I will read a story, essay or prayer such as the one you sent me which calms my heart. The essay or prayer will bring me back to earth and re-establish life’s meaning.
There’s a little story in your downstairs bathroom about foot prints in the sand. I am thinking of that now as I have re-read your card for the umpteenth time today and I listen to Cheryl talk to herself in the next room while she works on a sewing project for the grandsons for Christmas. (Her good periods are short and come and go quickly.)
I have come to believe that my purpose in being is to care for Cheryl and to fend off those who would take advantage of her weakened mind and frail physical condition. I probably take on too much responsibility for success or failure in that regard. I have not opened my heart completely someone beyond me to help with that. I admire your ability to find strength in your faith. I have not found that yet. Perhaps one day, but, for now I am still working on it.
Thanks once again for thinking of me and pointing out that He never gives one too much to bear.
Paul
Giving thanks to someone is humbling. And, though, I do not often use the phrase – I am blessed – My sister-in-law, Nancy, is there to remind me that I am in fact blessed but then she has been though a similar experience. She has the wisdom of hind sight and has chosen to look forward.
Adjunct_Wizard 