Caregiver Monica

A reader of this blog might wonder, what has Monica been doing the past many months?

When Monica’s family was visiting relatives in England in December, Monica and her mom had hoped to be a comfort or a help in her aunt’s valiant fight with cancer. Instead, Monica’s mom herself had to be hospitalized with serious medical issues. Monica and her younger brothers had to return to the States alone to get back to work or school, while their dad stayed with their mom. It was a serious adventure, rather than a fun, exciting one they might have loved to take.  The three of them took a train, transferred trains, rode the underground (the Tube), then stayed alone in a hotel, then rode a plane to Toronto, found the car in the park-n-fly lot, and drove four hours to home. They cooperated as a team with no problems. They also had a great prayer team at home and in England storming the heavens for their safety and their Mom’s healing.

When arriving home, the three found Grandma and their older siblings had already mobilized to keep the family together while Mom and Dad were still managing medical challenges.  Monica had to adapt to many changes. Dad brought Mom home to Ohio in a Life flight.

After a week in the hospital, she was moved to a rehab facility. Monica had to see her mother unconscious, then regaining consciousness, but unable to do many things.  Monica wrote notes to her mom and prayed for her with the family. When her friends took her to dinner, she invited them to the rehab center to visit her mom too.

Mom came home faster than anyone could have hoped; thankful for the miracle of the perseverance of Monica’s dad to get the right medical attention, the miracle of all the connections among family and community providing such amazing prayerful support and the miracle of healing.

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Monica found her mother mostly on the couch and it was Grandma doing the driving, shopping, laundry and organizing the house. IMG-20170126-WA0004

Monica had a little trouble adjusting. At the same time, Monica had work changes: a new work location, a new supervisor, a new van driver. Monica was not able to describe how these changes were stressful for her, so it came out in some disagreeability and difficulty cooperating – some just going to her room and closing the door.

As things settled down for her, Monica began showing more and more compassion to her mom.

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When arriving home from work, Monica goes right to her Mom to see if she needs a drink, or Tylenol, or another blanket. Monica increased her determination to complete more household chores.  Monica began calling her mother every day from work during her breaks and lunch to check on her. When Grandma had to leave, Monica immediately started making breakfast for her mom every morning.

So much to be thankful for!

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Monday, Monday

Monday morning chores.

No dust can settle on this girl!

Wake up. Get dressed in work uniform. Eat breakfast. Brush teeth. Put lunch in backpack.

Ready to go

Empty and load dishwasher.

Dishwasher

Gather laundry from hampers in the bedrooms. Take to laundry room and start a load. Whites first.

Take the city-issued garbage and recycling bins to the curb.

Practice piano – 10 minutes.

While watching for your ride, practice Italian lessons with Duolingo on the iPad.

Italian

When van comes, head out the door. Greetings to work friends! Off to work.

 

And it’s only 7:45 a.m.!

Girls Weekend!

Everyone knows Monica loves the Sound of Music. Our good friend Melissa made a dream come true this weekend. Melissa organized a trip to Columbus to see the Broadway production of Sound of Music. Monica packed her bag herself and could not wait to meet up with the girls on Saturday. We were impressed that she remembered to pack things like her earplugs so she could go swimming, a little container to take her thyroid medicine and vitamins, and her charger for her phone. There were four chaperones and four young ladies about Monica’s age on the trip.

They stopped at a Dunkin Donuts for a break and arrived at the hotel mid-afternoon.

They had a blast in the pool. They enjoyed the Happy Hour snacks.

They got all dressed up and headed out to the Ohio Theater downtown.

Monica described everything to us. The theater, the orchestra, the set, the beautiful voices, the children! She loved everything about seeing the live performance. Afterwards, they positioned themselves where the actors came out and Monica got to meet the woman who played Maria von Trapp. What a thrill for her!

13. Melissa

When they got back to the hotel they had pizza and cookies and giggled in their pajamas.

In the morning, they all went to Mass together at St. Patrick church and out to lunch at Spaghetti Warehouse.

This weekend excursion is something we never imagined would happen. We never thought we would have an opportunity for Monica to be included and taken care of so well. We could relax at home and know she was safe and having a wonderful time.

Florida Fun

Monica had a fantastic vacation this summer. We drove to Florida for a family wedding and stayed a week at the beach. All Monica’s siblings, their spouses and their children were together. sibs

One of the best parts of the trip was how Monica was included among the extended family…

At the wedding, she was seated with her peers, not her parents.

IMG_9089  girls

On the dancefloor, she was in the circle of 20 year olds, not the little kids.

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At the condo, she was welcome to visit the condos of the extended family, she didn’t have to stay with Mom and Dad.

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They took selfies on the beach.

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She took a turn at the wheel of the pontoon boat.

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Who doesn’t love the wind and the waves?

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Take me out to the ball game!

Take me out

 

 

 

at the game

 

A true Clevelander, Monica loves the Cleveland Indians. She had the rare treat of going to a game this weekend. John’s employer generously shared his seats behind home plate including the parking pass and food vouchers. Monica had a blast. She loves the crowds, the noise, the cheering; all the sights and sounds. The fireworks after the game were fantastic.

Her favorite event is the race between ketchup, mustard and onion. After the race, she ran a race of her own, chasing them down for photos!

Monica at ketchup

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Monica’s new job and The Disabled Person and Work

Because of a confusion at Monica’s job, Monica has been temporarily unemployed. Sometimes it is difficult for a person with cognitive disability to distinguish nuanced situations. At her last job some of these nuances occurred. On some days she was asked to join the residents of her nursing home for coffee, but on another day, she poured herself a cup and was disciplined. On some days free food was brought in for celebrations, but on another day she was accused of stealing a soda that was left in the refrigerator. She would refer to her phone for the time, but then if it rang and she answered it, it was a violation. Some of these incidents festered and her parents had not heard about them. (They came to light in a later interview.) So Monica has been home for several weeks, taking a breather so to speak. During that time she has greatly lamented her infractions, to the extent she can understand them. She has cried and journaled, but mostly looked positively toward her next venture.

Today her venture began. Her employer has placed her in a new facility which is actually a little closer to home. She was incredibly excited all the past week telling her relatives and friends about her new placement. Mom and Monica went out and Monica bought a watch so that she no longer needs to look to her phone at work…her phone is being safely stored in her locker during time on the clock. A journal book was purchased and inaugurated so that her employer can note any issues that come up. Daily it will circuit between home and work with a brief comment by employer and parents. Monica understands (we think) that it is better if she just eats and drinks food stuffs that she brings from home, and she cannot serve herself anything at work that she has not brought. This is a little difficult, sometimes there are mini-celebrations and birthdays celebrated during break. We will need to keep developing her sensitivities in this area.

So, today at the evening dinner table Monica reviewed her notes of the day and told us with sparkly eyes and cherubic smile all that had happened at work, new friends, new instructions and duties, new work hours. How happy we were for her, to see her laugh and almost trip over her words in her excitement. Then later this evening I was reading and came across this quote from Pope John Paul II’s document on “Human Work” Laborem Exercens (Section 22 – The Disabled Person and Work). I teared up when I read this and was struck with gratitude for all the efforts made by the agencies and employers who have worked with Monica. Despite occasional stumbles, they are participating in achieving this difficult good.

Pope John Paul II wrote in 1981:

“Recently, national communities and international organizations have turned their attention to another question connected with work, one full of implications: the question of disabled people. They too are fully human subjects with corresponding innate, sacred and inviolable rights, and, in spite of the limitations and sufferings affecting their bodies and faculties, they point up more clearly the dignity and greatness of man. Since disabled people are subjects with all their rights, they should be helped to participate in the life of society in all its aspects and at all the levels accessible to their capacities. The disabled person is one of us and participates fully in the same humanity that we possess. It would be radically unworthy of man, and a denial of our common humanity, to admit to the life of the community, and thus admit to work, only those who are fully functional. To do so would be to practise a serious form of discrimination, that of the strong and healthy against the weak and sick. Work in the objective sense should be subordinated, in this circumstance too, to the dignity of man, to the subject of work and not to economic advantage.

The various bodies involved in the world of labour, both the direct and the indirect employer, should therefore by means of effective and appropriate measures foster the right of disabled people to professional training and work, so that they can be given a productive activity suited to them. Many practical problems arise at this point, as well as legal and economic ones; but the community, that is to say, the public authorities, associations and intermediate groups, business enterprises and the disabled themselves should pool their ideas and resources so as to attain this goal that must not be shirked: that disabled people may be offered work according to their capabilities, for this is demanded by their dignity as persons and as subjects of work. Each community will be able to set up suitable structures for finding or creating jobs for such people both in the usual public or private enterprises, by offering them ordinary or suitably adapted jobs, and in what are called “protected” enterprises and surroundings.

Careful attention must be devoted to the physical and psychological working conditions of disabled people-as for all workers-to their just remuneration, to the possibility of their promotion, and to the elimination of various obstacles. Without hiding the fact that this is a complex and difficult task, it is to be hoped that a correct concept of labour in the subjective sense will produce a situation which will make it possible for disabled people to feel that they are not cut off from the working world or dependent upon society, but that they are full-scale subjects of work, useful, respected for their human dignity and called to contribute to the progress and welfare of their families and of the community according to their particular capacities.”

Fun with Friends

We are so grateful that God gives different gifts to different people. Some are called to be teachers, or doctors, or to work with elderly, small children or people with special needs.  We have met so many wonderful people who choose and enjoy providing for the needs of people with disabilities. Two programs that Monica enjoys are the PinPals bowling group and SOAR dance exercise classes.  Both programs were started by ordinary people who felt called to serve people with special needs.

The PinPals bowling program is held at Bay Lanes, in Bay Village, Ohio. Mark Nazario, the owner of Bay Lanes opens on Saturday morning just for this group. The bowlers range from barely school age to adults and nearly fill all the lanes.  Mark offers a great price to make it affordable and Mary and Bob Custer put the participants into groups so they are bowling with peers, some with bumpers or other aids, some really good bowlers! Mark had a great video created highlighting the group.

PinPals at Bay Lanes  Mary,Monica,Mark

Monica is in the video with her bowling friends. They all get encouragement and praise throughout the season and certificates at the end.  This is significant to many young people who would never have the opportunity to be on a team or get recognition at their school.

PinPals

Jenni,Monica,Holly,Donna,Michelle

More recently, she has joined some activities sponsored by Scott Montgomery at SOAR.  She attends a dance exercise class on Mondays. Not only is the physical activity good for Monica, but the people volunteering with SOAR truly show an interest in each of the participants. Two weeks ago, they all sang Happy Birthday to Monica and last week they took a photo of the group for a Get Well Card to one of the participants who was hospitalized.  The participants have a wide range of ability to participate in the exercise, but all are encouraged to keep moving and enjoy being together.Monica at aerobicsMonica at class