Years Two-to-Three

Things continued on about the same with a few additions to the schedule here and there, including therapies and doctor appointments. They met with Vocational Rehab to determine if he could eventually hold down a job, even part-time. Part of that determination included evaluation at the Rehab Hospital in Carmel. It was an exhausting testing and evaluation day for him. The results came back a few weeks later: his IQ is now 62. Sixty-two. six. two. Only two digits. The best job Voc Rehab could attempt to prepare him for was homemaker. But his IQ was easily close to 130 or so pre-stroke. But he was this close to completing his doctoral degree. An unexpected wave of grief swept over her yet again.

By the end of the second summer her stamina and patience were wearing thin. Her best friend, Jenn, mentioned respite care a few times, but she blew it off thinking she “couldn’t do that to him,” or that respite care was something only old or weak people did. Jenn crossed paths with someone who worked in the administrative office of a local nursing home, so she asked how respite care worked. She decided she did, in fact, need a break, so she called Colonial Oaks, and asked about it. Yes! They regularly take former patients in for respite care. So, she started taking him on Friday nights for a 48-hour break every few weeks. It was just what she needed to rest and refresh, and sometimes she’d get away for a long weekend with a girlfriend or attend an event out-of-town without worrying about his care. To make respite care a little more palatable, they referred to it as “camp,” since there were snacks, crafts, and sleeping overnight.

The second Christmas came and went with the kids visiting on Christmas Day. And suddenly the second anniversary of the stroke was upon them. This anniversary date was harder than the first year anniversary for some reason. There were so many memories flooding her mind. So many what-ifs and dreams that were now a distant memory. Two years seemed like twenty years.

Her folks saw a problem, and offered to help solve it. She and Laura were constantly putting his feet up and down on the recliner, since all recliner’s handles are on the right side. For a normal person, this doesn’t seem like a big deal, but a dead leg is very heavy, and heavier on a large man. Her folks and two of her uncles offered to purchase a lift chair for him, so during a respite weekend, she went to Ft. Wayne and shopped with her observant, caring parents. They tried several chairs at four different stores, and she knew the brown leather chair that reclined completely and felt like sitting in a cloud was what he needed. She and Laura were so thankful for the chair, and he didn’t mind either! After he figured out how to use the remote control, he could adjust any leg position, sit more upright, put the chair in an almost standing position to stretch out his back. It was the best gift ever in their current world.

After working hard in several more therapy sessions, he could get out of his lift chair himself and into his wheelchair. He had freedom! He would roll around the house, get back in his “cloud” chair, get back in his wheelchair to go get a drink, and on and on…without help. Until he fell in May 2016. He was pivoting to move to his wheelchair, and his right foot wasn’t set correctly. He fell into the coffee table with his full body weight on his right side. He broke his right shoulder. Freedom was over.

The break didn’t require surgery, but it did require immobilization for eight weeks. Laura was a trooper and figured out how to shower him without moving that arm. He didn’t complain, except once in a while when he was tired of the straps holding his arm to his body. In July he was cleared from wearing the immobilizing brace. It still took months before he was confident enough to transfer himself from his lift chair to his wheelchair and back. In the meantime, he had two lithotripsy (kidney stone) surgeries which kept him out of therapies for a couple of months, and kept she and Laura busy caring for him in different ways.

He got used to going to “camp,” Colonial Oaks took great care of him, and she learned how to better care for herself. Christmas came and went, and the third January 4th was upon them. He didn’t notice as she reflected on the date. No more what-ifs and  could-have-beens. This time she wondered what the next year would bring, and she thanked God for her supportive co-workers and the few close friends who were still around. She reconnected with another mom from the high school football days. She’ll blog about that next…stay tuned for something exciting!

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do. James 1:2:-8 NIV

 

 

After Year One…

The days turned into weeks and weeks into months. Laura faithfully arrived every morning as she went on to work. She went home at the end of eight hours to relieve Laura. He remained happy, content, and positive through it all. Their son finished college and graduated just before their “First Christmas.” “Year One” came and went, and she remained in a fog of work, dressing him, feeding him, loving him, taking him to the bathroom, putting his feet up and down, up and down…up…and…down… His communication improved more each day, but he still experienced moments of aphasia (forgetting words) and looping (repeating words).

The money ran out after Year One, and she had to reduce Laura’s hours to part-time, since her insurance wouldn’t cover home health care. People asked, “Does he really need full-time care?” Yes, he did. He needed help getting out of his recliner into his wheelchair. He needed help getting to the bathroom. He needed help while in the bathroom. He needed help getting a glass of water and lunch. He needed help taking a shower. He couldn’t get himself out of the house in an emergency. He couldn’t make a phone call. Yes, he needed full-time care…all the time. And she had to work. And there was no more savings to pay for his care.

She was referred to LifeStream Services for help with his needs. With their help she did the thing she did not want to do, but knew she had no other choice: she applied on his behalf for Medicaid. He was approved, and suddenly services were available to him again. Laura was hired by a local home health agency full-time, and was able to come back to care for him. This was a huge blessing for Laura, him, and her.

Her counselor recommended calling Vocational Rehab for help with job training and other services. They met with Dena, a wonderful case worker, and Vern, her seeing-eye Black Lab. Dena filed paperwork for evaluation with the Rehab Hospital in Indy. The paperwork took months to get through, not surprisingly.

By March, she was at the end of her rope emotionally and physically. She found an inexpensive flight to St. Pete, Florida, and spent several days with a long-ago girlfriend. Her folks, their son, and Laura took care of him the whole time she was away. She was ready to return home, glad it was confirmed that home was still her favorite place to be. But she realized she’d need to get away for a few days every few months.

She decided they should try returning to church, so they attended on Easter Sunday after Year One. A small handful of people stopped to say hi, but most just gawked and walked the other way. It was a painful reintroduction to church, especially after not hearing from anyone on the staff since he was at Lutheran Hospital the week of January 5, 2014. She was a little bitter about it, but soon realized those weren’t productive thoughts. She thanked God that she was brought up in a supportive, Christian family, and knew that the building and the people weren’t what mattered. Eventually, she found a church online that they both appreciated, and they could watch in their family room.

Their son, six months out of college, moved closer to work and further from home by May 2015, and they were suddenly official empty-nesters. Their daughter and son-in-law still lived in town, were working, enjoying married life, and raising two puppies. Their daughter was halfway through her master’s degree by this time.

 

Graduation 2014

…but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40:31 (NIV)

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)