After my dad moved back home, post-stroke, the stress really set in. Until that point, Mom and I had been trading off my sister’s care, on a daily basis. Our days went like this: I would get to the nursing home to keep my dad company, until Mom could get there. When she arrived, I left, picked up the kids from school, then headed home to cook. Because of the fabulous ramp some of Daddy’s friends built onto my house, my sister was able to get off the bus, from her day program, at my house, and I would keep her until Mom got home. At that point, I would hand off my sister and their dinner, and send those two on their way. This went on for months.
Then Daddy was released. Let me first say, this man had no business coming home, at least physically. But there wasn’t a rehab facility that we found on this side of the United States that was willing to take a pontine stroke patient. Door closed. But emotionally, being home was so good for him, and God knew that was what he needed. After all, he hadn’t been home in five months.
We were so unprepared for his care and it was so, so stressful. He was still on a feeding tube, which we now had to use manually, as insurance would not approve the automatic feeding pump. He could not control a single part of his body. Not one limb. And did I mention my mom, his only caregiver, is under five feet tall? Yeah, it was a disaster. We had manual lifts allllll over the house, to move him in and out of the bed and the wheelchair, as needed.
I stayed there for hours each day, for both physical and emotional support, and to work with my dad on some Occupational and Physical Therapy. The home therapy that was covered by insurance was paltry, barely enough to maintain what ability he had recovered. We had his therapists show me what to work on, and each day I would do his exercises with him.
After I finished with his therapy, I went home and cooked for them and for us, and brought it back. I was so blessed during this time that I didn’t have to work at all, and I was still receiving a sizable paycheck (thank you, Young Living!). As my mom got used to the situation, I started coming for fewer hours. You can only imagine how far behind my house and laundry fell. I had put my husband and children on the back-burner for MONTHS, and they needed me, too.
A New Plan
Unbeknownst to my parents, I had been talking with my BFF about the future of my sister. What I’ve not told you yet is the toll all of this took on her. To remind you, my sister is profoundly mentally retarded, with Cerebral Palsy and seizure disorder. The good thing is, we had her seizures under complete control, as we had been working to get her off most of her meds and supplementing with some natural remedies. The success was enormous. But once my dad moved home, her seizures began spiraling out of control. They were so bad, her day program was bringing her home before lunch most days. We knew, KNEW it had to be stress-related, at least in part. Without reading her mind, we could tell she was scared, worried, and bored.
Finally, my friend and I went to tour a particular residential facility for people like my sister. To say I was impressed was an understatement. The facility has two parts – day program and home – and the family has no out-of-pocket expenses. I have been in lots of these types of facilities during my life, and I can honestly say I’ve never been in one like this. The love that the employees we met and saw had for the people in their care was overwhelming. They didn’t see them as clients. They didn’t see them as special needs. Instead, they saw them as people. Their personalities, their wants, their desires, were all taken into account in everything the employees did. It was truly amazing!
We asked when, WHEN could my sister get in??? And when they said the waiting list was approximately two years long, we were pleasantly surprised. Clients don’t leave this facility because they’re tired of it and want to go home. Many of them no longer have a home to go back to, as they have outlived their parents. The only way they leave is when they pass away. And let me tell you, this place does everything they can to keep them well. Where do the mentally retarded go when they are elderly? They don’t have the same needs as a typical nursing home patient. I was impressed to learn that the clients at this facility don’t have to go anywhere. They get to stay at their “home.” Everything is taken care of for them.
I Dropped the Bomb
Thanksgiving weekend, I told my parents what I had been up to. They were in a bit of denial, as expected. This is their baby, after all, whom they have cared for all of her 45 years. They never considered the fact that they were in their late 60s and would not be able to care for her much longer, even if my dad was in perfect health. It was too hard for them to think about. But it was consuming my every thought and causing me a significant amount of anxiety. I had to do something. During our Thanksgiving chat (nice timing, huh?), I reminded them that all that had to happen for their care for her to falter was for my mom to get sick or injured for one day. And if that wasn’t convincing enough, God decided to show them what I meant.
A day later, ONE DAY LATER, my mom threw out her back so badly that I had to cancel travel plans with my own family, and take her to the hospital, where we spent all day in the ER. I think we had a caregiver for my sister that day. I honestly don’t remember, because it was that stressful. My family was on the road to Nashville, and I was stuck taking care of my parents and sister. My nightmare was coming to fruition. All I know is whoever came to take care of my sister, watched over my dad, too. And praise the Lord for that!
That weekend was all the proof my parents needed. And whether they agreed or not, I was putting my sister on the waiting list the next day. But if you thought I was running like crazy before, it was about to get a lot worse. My days were spent getting our house cleaned out and market-ready. But my evenings were suddenly not my own.
At 3 p.m., I picked up my children and hurried them home to start homework. By 4:30 p.m., I had to be at my parents’ house to get my sister off the bus (assuming she made it all day at school), potty her, and go ahead and change her into pajamas. Any later in the day, and her body was too tired to cooperate. I then headed back home to cook dinner for eight people. Once it was done, I would start my kids eating, pack up my parents’ food, and run it back to their house, so they could all eat by 6 p.m. Then back home to check on the kids, make sure homework was done and showers were started. My husband was usually rolling in around the time I had to head back to my parents’ house to get my sister in bed. By the time I got home, it was my own children’s bedtime, and I had spent no time with them.
Plans were going forward for us to move, and our house sold beyond quickly. We were moving across town, in four weeks, and I was worried sick about my parents and my sister. Things had eased up, at this point. My mom’s back was much better, but for how long? Was I going to spend every day driving across town to help them? And then God stepped in with an open door. That two-year waiting list for my sister to move into the residential facility? Yeah, not so much. Try less than six months. They had an opening and she was moving in two weeks. In other words, she was moving before I was!
An Open Door
Mom and Dad were in shock with the news of my sister’s move. They were not ready. As unrealistic as it seems, they had never really planned on her leaving. Ever. I really think they assumed they would die and I would just take over. But my greatest fear, for years, has been that they would die, she would have to leave her home and she would feel abandoned. I would have to forgo my life with my children and husband to take care of her. My fear was I would resent her (and them) for that, and we would grow old and miserable together.
Getting my sister placed in her new living situation meant that when my parents do pass, it will have less of an effect on my sister. She will not be ripped from her home, in the throes of grief. She will already be living her new life, with her new friends. She will be sad, but she will not be broken.
And then the day came – moving day. I will never forget the look on my sister’s face when we took her to stay her first night, at her new home. Pure joy. She was absolutely ecstatic! I mean, we knew she was bored with her day program, and at home, but no one expected this. I have truly never seen her smile so big in my life! She kept looking around, taking it all in, as if to say, “Is this really happening?”
The staff called a few times those first few weeks, concerned she wasn’t eating enough. They said all she would do during meal times was smile and look around at everyone, hardly taking a bite. We reassured them it wasn’t that anything was wrong. On the contrary, everything was finally right in her world. She was with her new friends. Like her baby sister, she finally got to move out and have her own life. She was happy.
My sister has been at her new home for five months now, and gets to come home nearly every weekend, for a night or two. My parents are still adjusting, emotionally, especially since no one, not even a great place like this one, takes care of your baby like you do. But I can see the weight lifted from my mom’s shoulders. She will never say it out loud, but the stress has definitely lessened with one fewer person to take care of, on a daily basis. They don’t have to worry about getting home in time to meet the school bus. They don’t have to worry that they will receive a call that my sister is having a seizure and needs to come home right away.
As for me, I don’t have to worry that I am letting down my family. God put us in the right place, at the right time, to receive the right care for my sister. Isn’t His timing amazing?