The “new normal”

He hadn’t lived at home in almost six months. There was some adjusting for both of them. She bought a recliner for him, since the furniture in the family room was too “squishy.” Did you know that all recliners come with the foot rest handle on the right? She and Laura felt the affects of the up and down of the foot rest quickly; his right leg was dead weight and very heavy. He had been in therapy for months, and was pretty strong and agile, considering that his right side was still not responding. He had lost 80 pounds since January 4th, so she and Laura were able to lift him from his new recliner to his wheelchair to the bathroom without much trouble.

She sold his car the same week she was notified that he was no longer employed at the university. She told him, and he was sad, but he forgot about it. No more employment = no more insurance for him, her, or their son, who was still in college. Thankfully, her employer added a group policy that the family could purchase. New insurance = more therapy sessions!

She took him to Colonial Oaks on the south side of town for therapy 2-3 times a week, after getting him up, dressed and fed. Then after a couple hours, she’d leave work, go back down to the south side of town to pick him up, and take him home in time to meet Laura for the rest of the day. In the evening, she’d make dinner and shower him, after working all day at her job. This schedule lasted not quite two weeks. Colonial Oaks was kind and generous, and allowed their activities van to come get him and bring him home. The therapy sessions ran out (insurance limits again), so he and Laura were soon home full-time. Laura proved herself invaluable as a helper and a friend.

He began doing “laps” in his wheelchair around the house to try to stay somewhat limber, but soon the lack of therapies began to show physically. He gained weight, and lost much of his desire to move around as much as possible. After a couple months of her showering him in the evenings, he agreed that Laura could take on that duty as well, which was a big relief to her. She was exhausted most of the time, and thinking about showering him after a long day at work was almost more than she could bear.

She still visited her therapist every other week. It was a safe place to be honest about her thoughts and feelings; she was experiencing a form of grief. The stages of grief: loss-hurt, shock, numbness, denial, emotional outbursts, anger, fear, searching, disorganization, panic, guilt, loneliness, isolation, depression, re-entry troubles, new relationships, new strengths, new patterns, hope, affirmation, helping others, loss adjustment. The first few months after he moved home, she was in the fear-searching-disorganization phases. The paperwork was still overwhelming her, she wasn’t sure how they’d stay in their house, and the formerly uber-organized gal was really unorganized. People didn’t know what to say when they saw her out and about. Some of the comments that didn’t help were “everything happens for a reason” and “at least you still have him here” and “when will he get better?” and “just call if you need anything.”

Even though things were intensely stressful, they did have their lighthearted moments. Aphasia was both a blessing and a curse. He would become so frustrated when he couldn’t use the correct words, but sometimes the wrong words were funny. One night after she’d helped him get ready for bed, she rolled him back into the family room, and he said, “Could we change the testicle channel?” Hmm…that time testicle = television!

Summer turned into fall, and their son went back to school for his last semester. She was alone with him in the evening, bringing a new set of challenges.

There is a time for everything,
    and a season for every activity under the heavens:

²     a time to be born and a time to die,
    a time to plant and a time to uproot,
³     a time to kill and a time to heal,
    a time to tear down and a time to build,
⁴     a time to weep and a time to laugh,
    a time to mourn and a time to dance,
⁵     a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
⁶     a time to search and a time to give up,
    a time to keep and a time to throw away,
⁷     a time to tear and a time to mend,
    a time to be silent and a time to speak,
⁸     a time to love and a time to hate,
    a time for war and a time for peace.

Ecclesiastes 3:1-8 (NIV)

 

 

Moving home…

In April 2014 he was invited to an IWU vs. Taylor University baseball game along with his family. A few friends from the office came to see him and give him a hug. He told them he’d be back to work in a month or so. She shook her head “no” behind him, since he still didn’t understand the extent of his injuries from the stroke. He loved seeing people he knew, and while his communication was still very sketchy, he was gracious and positive and a great encourager of those around him.

Early in May she decided to try an overnight at home with him. It was awkward, he was uncomfortable, she was nervous, but they survived. The next day, the insurance company decided that if he could try a night at home, he must not need to be in the rehab facility any more. Lesson learned: don’t take him home for an overnight stay. The doctor was able to convince the insurance company to let him stay at Colonial Oaks through the duration of the 90 days.

Near the end of May, when he got close to the end of the 90 days at Colonial Oaks, the rehab therapists evaluated the house’s accessibility for his wheelchair, showering, sleeping, and general living for a fully disabled person. The front door had already been widened, wheelchair ramp installed, bedroom door widened, and bathroom reconfigured, so when Physical Therapist Nate walked in, he said, “Are you seeing this?! Look at this bathroom! This is perfect!” She felt pretty good about bringing him home to a place he could live as comfortably as possible.

As June neared, it became glaringly apparent that she wouldn’t be able to care for him and work full time. They’d all prayed that his therapies would teach him to take himself to the bathroom, and how to be alone for more than 30 minutes at a time, but that prayer was answered with a resounding “not now.” She prayed for guidance and clarity for what she should do. Insurance wouldn’t cover local home healthcare companies, and other companies didn’t come to Marion. As the day loomed, she put out a plea on Facebook for help. She asked for leads on anyone who might be able to come to the house while she worked. The very next day a wonderful person they’d known for almost 30 years, Brenda Haecker, called her at work and said, “Call Laura. She’s an awesome home health aide, and her current patient just passed away…but don’t let that scare you. Her patient was elderly, and it was time!” So she called Laura, and she and her parents interviewed Laura at the house. Laura loved the pup and the Colts and Cubs. Could she be that perfect a fit for their situation? Laura was concerned about what she’d do for a job since her patient had passed.

God answered the family’s and Laura’s prayers with a “yes” to this particular request. Laura was hired, and she’d start as soon as possible; a week after he moved home. Thankfully, some offers for “help any time” were real, and Lori Mughmaw stayed with him the first Monday. The next three days she was to be in Indy for work, so their son and her folks said they’d take care of him, and they did. She slept really well in the super-comfy bed at the Hilton Garden Inn, because she knew it was her last chance for a good, hard sleep.

 

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.

Psalm 91:1 (NIV)

The next ninety days…

At this point in the process, he couldn’t be transferred to Colonial Oaks by the hospital. The ARU doctor completed paperwork for her to take to the license branch to obtain a handicap tag for the car. She didn’t realize how hard it would hit her when she was handed the blue tag that read “NO EXP.” No expiration. In other words, keep this little sign forever, because you will need it. His handicap, his disability, will most likely never expire.

She learned how to put him in the car, and take him out of the car…how to move him to his wheelchair from just about anywhere…how to appreciate a gait belt. She was very thankful that he’d lost about 50 pounds in the previous couple months.

He moved to Colonial Oaks on March 10, 2014. He had a nice room to himself near the pond. And he was the youngest person in the place. He took a nose dive out of his wheelchair the first week. He thought he could untie his own shoes, but that proved to be incorrect. He had a CAT scan to check for a brain bleed, and they watched the large goose egg on his forehead pretty close.

They started all the therapies as soon as his new injury was better. He made fast friends with the therapists, of course, and the nurses and aids became friends as well. He was friendly and funny, even though his words weren’t always clear, and the staff showed their love for him every day.

She visited every day but Thursday, when their daughter and son-in-law would visit. Pup was allowed to visit him with her. She only tinkled on the floor a couple times.

Their first outing – her taking him somewhere alone – was to Lowe’s on a slushy Saturday. She didn’t take a wheelchair along, because she didn’t think he would want to go in with her. He was ready to see something other than a hospital or rehab facility. She worked to get him out of the car and into the Lowe’s wheelchair, but the brakes on the chair were bad. The chair rolled, and he landed on his bottom…in the slush…with his right leg folded under him. He yelled and cried out in pain, and she was frantic. People kept walking past them and staring. She couldn’t lift him from the ground on her own. She looked at a couple coming out of the store, and pleaded, “Would you please help me?” And they did. She didn’t get their names, but they were her angels that day.

In April she applied for Social Security disability. Sara at the local SS office was a pleasant surprise – she was extremely helpful and offered so much support and information. He was approved on the first try. He would start to receive SSD in August.

The house remodel plugged along with generous volunteers from Mt. Olive UMC coming on Saturdays, and volunteers from Converse Church of Christ coming on week nights to tile the shower. She was either at work, at the rehab facility, or sleeping upstairs at home. Her folks continued to come down from Ft. Wayne to help with the house and the pup.

As much as he was positive and happy and pleasant, she was trying to hold it all together. By this time, the hospital bills were pouring in. The most shocking was the twenty-minute helicopter ride from MGH to Lutheran: $36,000. Insurance paid one-third of that bill.

Winter turned into spring, he watched baseball daily after therapy, and he lost a few more pounds. He rolled up and down the halls of the rehab wing of Colonial Oaks cheering up the old people along the way. She cleaned up all the dirt and mess from the projects at home, and started going to counseling, because the depression was getting darker and heavier.

So my spirit grows faint within me;
    my heart within me is dismayed.
I remember the days of long ago;
    I meditate on all your works
    and consider what your hands have done.
I spread out my hands to you;
    I thirst for you like a parched land.

Psalm143:4-6 (NIV)

The next sixty days…

The days ran together while he was in the MGH Acute Rehab Unit. Get up early, stop at the hospital to see him, get to work a little late, leave work at 4:00, go home to get the pup, go back to the hospital (where the pup was allowed to visit) until his bedtime. Every day the same. She learned how to shave his face, brush his teeth, feed him, change his bedding while he was in the bed, change his clothes, put very tight compression (anti-blood clot) hosiery on his legs…

She was very protective of him. So many people wanted to visit, but he still needed dark quiet for awhile. She made a schedule of times people could visit, and friends and co-workers signed up for 15 minute time slots three days a week. She would make sure he was decent, and there wasn’t breakfast all over his face. She knew if he could communicate it, he would want these things checked before people came to see him. She wanted to protect him as much as possible. Because she knew he would do the same for her, if the situations were reversed.

While she was at work, he was introduced to intense therapies – physical, occupational, and speech. The caring therapists worked to make him move his left side as much as possible to build his strength. The right side lay limp. The therapists started to move his right side along with his left to promote “mirroring,” with the hope that eventually his brain would reconnect nerves and reroute around the damaged parts to relearn with the help of his left side performing regular movements. The therapists tried e-stim therapies: electronic stimulation. The arm wasn’t extremely responsive, but his calf and foot did show some movement when the nerves were stimulated by electric pulses.

He tried shaving with his left hand using one of the hospital’s disposable razors. Not a good idea. She came  to see him that afternoon, and it looked like he’d been attacked by a bear! She brought him his own razor from home the next day.

Her mom and dad came every week for three days at a time to cook, clean, and do small projects around the house. They were a gift from God during this time of burning her candle at both ends.

After the first three weeks in ARU, the nurses moved him to a room where he could see people coming and going. By this time, he was noticing and paying attention to his surroundings much more. The room had a window to the south sky, courtyard, and parking garage, and even though it was frigid outside, he could enjoy the afternoon sun and watch it snow.

Good friends Jenn and Jer knew that she would need help with some house fixes before he could ever come home. They called Mt. Olive UMC’s Faith in Action group to help. The selfless group of volunteers installed a wheelchair ramp, widened the front door, and rearranged the downstairs bathroom to accommodate a wheelchair. While the inside remodel was taking place, she moved upstairs to their daughter’s former room and bathroom.

She arranged and rearranged the plants, cards, stuffed animals, pictures, and other gifts every day for sixty days. She told him about local events and news stories, but he had trouble with contributing to the conversation. This was hard, because they had always discussed current events, and shared ideas on how to solve the city’s, county’s, state’s, world’s problems. The hope that he would get back to normal…back to work…back to his doctorate…sooner rather than later slipped further and further away. On March 10, 2014, because insurance would no longer pay for acute rehab, he was moved to Colonial Oaks Rehab on the far south side of the city. And she still didn’t cry.

My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise. Psalm 51:17 (NIV)

The first week…

It snowed about 15 inches on Sunday into Monday, January 5 and 6 as the family sat in intensive care watching him struggle. There were so many cords and sensors all over him. He was uncomfortable and confused. The room had to be kept dark, as darkness the first several days would help healing. It was surprisingly noisy in ICU, but the nurses were compassionate.

She was in a fog. What would they do? He had to get better, and quick. They’d never lived on one paycheck before.  She put out the prayer request on Facebook: Please pray for a quick, complete recovery. God would answer that prayer positively, right? She didn’t cry. Except for a couple tears one morning before she went to the hospital that first week, she didn’t cry.

The physical therapist came to his room on Monday and he stood up…not well, but he stood. The doctor and therapist warned that his whole personality could change 180 degrees, as happens with severe brain injuries. Was he kind before? He might not be anymore.

They were thankful her folks lived in Ft. Wayne. The usual fifteen-minute trip to and from Lutheran Hospital took an hour in blizzard conditions. She was thankful once again that her kids and son-in-law Josh were with her.

By Tuesday, they were out of clean clothes, and they needed to go home to take care of some things. When they packed early Sunday morning, he had recovered from the first stroke, and they thought he would be at Lutheran only a couple days. Josh drove them to Marion on I69. This trip should have taken under an hour, but it was a sheet of rutted ice and snow. It took over two hours to get home. She took care of some things at work. The kids made contact with their employers and professors. Everyone was thoughtful, caring, and kind.

On Wednesday afternoon, they returned to the hospital. No change, they said. Maybe he’ll transfer out of ICU tomorrow. By this time he’d had more than a couple CAT scans and MRIs. They found a mass on his left thyroid, but the doctors at Lutheran wouldn’t touch it. Wait until he moves back to Marion, they said.

On Thursday he moved to a regular, non-ICU room. He tried to talk, but couldn’t form words. Ron and Jeff, longtime friends, braved the roads and visited from Sweetser and Ossian. They were visibly heartbroken by the big man in the hospital bed who was unable to talk to them.

Friday afternoon they told her it was time for him to move to Marion. Where should he go? She decided Marion General Hospital’s Acute Rehab Unit would be best: it was halfway between home and work. He arrived at the ARU around midnight on Friday. She realized the paperwork she would need to manage throughout the process would be massive. By the time he arrived, she was exhausted from the week and from answering a whole list of the same and some new questions. She kissed his bald head, tucked him in, and went home to collapse in her own bed. And she still didn’t cry.

“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28 (NIV)

In the beginning…

Married 26.5 years, daughter out of college and married, son almost done with college, one cute pup, a beautiful home, wife with an MBA and great job, hubby working, teaching, and finished with doctoral classes and ready to submit his proposal for his dissertation, a step closer to his doctoral degree…

Life was just about perfect. So close…so much to look forward to. He would be a college professor, write books, take the family on vacations, and play on the floor with future grandchildren.

Their marriage had survived tough years, lean years, happy years, stressful years, the year they almost split. Trips to Disney World, spring breaks to Ft. Myers Beach, and tent camping in bear country.

The Blizzard of 2014 was predicted, and would start early the next morning. She stocked up on groceries to make goodies and enjoy being snowed in. He filled in for a friend doing PA at the girls’ county basketball tourney, and saw lots of old friends from his former PA days. He had a headache all day, came home for a nap between games, took his contacts out and popped some Advil. They met friends at Buffalo Wild Wings after the championship game for a “last meal” before the big snow started. They watched the radar, since the friends’ teen daughters were out with friends.

Then it happened. Richard the Server asked him if he’d like more to drink. He didn’t answer. She elbowed him. He turned to look at her, and his left eye and mouth were severely sagging. She knew. The other couple knew. But she was in denial. It was surely his blood sugar. He hadn’t eaten all day, right? The friends called 911, other friends in the restaurant came to help. More friends came to the emergency room. The kids and their friends came. Richard the Server came.

Doctors poked, prodded, checked, scanned, called specialists. The neurologist from Lutheran Hospital was on the ipad at the end of the bed watching and giving direction. He came back! His left side recovered! He wasn’t confused, and was making jokes with the ER team. The helicopter crew arrived. The family decided to send him with them just in case. The snow was coming any moment. The neurologist asked the wife if he should be given TPA, the clot-busting drug, but his blood pressure was too high. Give him the TPA and he could bleed to death. Don’t give it to him, and the clot will cause more brain damage. “What would you do if it was your spouse, doctor?” “I’d wait until the blood pressure came down.” Done. They waited, friends came to the room, held hands, and prayed over him. They sent him with the helicopter crew.

He took off for the twenty-minute flight to the southwest side of Ft. Wayne. She and the kids quickly packed for a couple days away, called her parents, his sister and brother, made arrangements for the granddog.

The hospital called her as she and her family were racing to beat the blizzard to Ft. Wayne. “He’s had a major ischemic stroke while in the air. We want you to be prepared when you get here.”

They arrived early that Sunday morning, before the snow came. He was delirious, confused, scared, trying to get out of his bed, yet unable to use hisright side or talk. They watched, helpless, as he struggled…and as it snowed and snowed.

He heals the brokenhearted and binds up their wounds. Psalm 147:3 (NIV)

~~~~~~~~~~

I’m starting this blog at the behest of one of my best friends, Jennifer Hite. She encouraged me to do this as a way of journaling our experiences over the past two years, and potentially helping others as they go through similar situations. I’ve learned a lot, and I’m willing to help others.

Follow me. I’ll tell you more in future posts.

~ Sherri