By the end of July, it became excruciatingly obvious that David wanted to leave the facility – my greatest fear was that he might ‘go over the edge’, become agitated or aggressive and they would not let him go before we could get him out of there and home with us. The use of the calendar helped him cope with the last remaining days – and we would ask him to count off the days but he wanted to leave now…
At our rented house, I had purchased the medical items the facility approved upon David’s dismissal and everything was properly put into place. We had assembled a wheelchair, walker, bed rail, shower bench, a sturdy handhold for the bathtub along with a handheld spray unit, and the wheelchair ramp was in place at the garage door. All that was missing (besides my husband) was the furniture and household items that were making its way down to Florida from Ohio via moving van.
Ironically, on what would have been David’s 10th wedding anniversary (August 1), my sister and I drove to the facility for the last time – because David was coming home permanently.
Although we talked to David the night before and told him we were coming today, we don’t exactly know where he will be once we get there. It didn’t matter – after today, we will hopefully never have to return to either the hospital or the rehab facility. On the long drive up, my sister and I talked about what might happen and how we will deal with things once David is under our care. A major concern was how much rehabilitation he will need (or cooperate to participate in) after he is evaluated for therapy tomorrow. His insurance will only pay for so many, so we’ll have to be resourceful.
And we talked about being a caregiver. “What you don’t know,” she said, “David will teach you.” How hard can it be? I raised him once and I can do it again. As it turned out, she was exactly spot on! I took my role as caregiver seriously but I tried not to treat David as if he was an invalid. I just thought of him as recovering from an accident – knowing he needed time to heal and time to learn again – how much time no one knew.
I told David that he was going home when he saw us with his suitcases. My sister and I decided to go to his building to pack up his clothes before trying to locate him. His case manager had obviously ignored our pickup requests. But didn’t want to stick around to argue – we simply dumped the large garbage bag full of clothes into the suitcase and took them to her car.
We found David in the lunchroom with a group of clients and caregivers. His back was to us and as I tapped him on the shoulder, he turned his head. His surprised look and the grin that followed meant he understood that ‘TODAY WAS THE DAY.’ He didn’t need to see us with his suitcases…he knew he was going home. Many of his caregivers were there with him that morning and they each hugged him. They wished him luck, told him to work on his legs, and be careful – no more accidents. It was a tearful goodbye.
On our way out of the main building, David’s case manager rudely instructed us to go to the medical building to collect his medications, and then said to leave the wheelchair in the lobby, and then she walked away without saying a word. At the medical building, a nurse handed us a plastic bag full of bottles and a stack of prescriptions. My sister just shook her head.
We went back to the lobby while my sister went to get David’s new wheelchair. No one came out to help us or came to retrieve the facility’s wheelchair ~ everyone had disappeared! But we didn’t care because the first phase of David’s journey was ending and a new phase was starting.
As we said goodbye to the Spanish moss strung Live Oaks and the fields of orange groves, it was nearly 1:00 pm. We decided that we were hungry so we stopped at a restaurant we had passed a bazillion times coming or going to the facility. David was genuinely happy to be with us, often reached for my hand to give it a squeeze, and quietly said, ‘thank you’.
The drive back was quiet but my sister and I could tell that David really enjoyed the ride. Once we reached at our rented house, my sister retrieved the suitcases as I wheeled David inside. He was excited to be there, making sounds and saying that he loves this or loves that as I took him from room to room. Then I wheeled him into his room to show him all of his belongings; items and objects he has not seen in almost a year were also there with him.
We were so glad this day had finally come! My sister made dinner and invited family over – conspicuously absent was David’s wife and baby as she had declined to come. We were tired from our busy day so when our company left, my sister and brother-in-law prepared the sleeper sofa – because they wanted to be close if either of us needed them. The next morning, my sister went through the prescriptions and responded with the need to either remove or lower some of the doses, but we’ll need to consult a Neurologist…she knew just the person that she trusted that would work with us.
For several days, David woke up totally wet from head to toe. The adult diaper wasn’t working – so I knew the bowel and bladder program was not as successful as the facility lead me to believe or I had to come up with a plan to limit liquids after dinner…and it’s high-time the G-tube was removed. Now I have two appointments to make – after the insurance company preapproved them.
Therapy sessions were trying, especially physical therapy. David got anxious and he either had mini-seizures, or faked it so he didn’t have to work so hard. He often touched his head, which they assumed was a headache and allowed him to rest. But when he was home, this sort of nonsense didn’t happen.
I began to understand David’s way of communicating and we often had animated conversations about things. One of the more amusing ‘conversations’ centered on the 19” TV that sat on a 4’ fold out table that I purchased to use as a desk. Sometimes a picture is worth a thousand words, so after a few days of this, I handed him a pad of paper and a pencil and asked him to draw what he could not say in words. A few hours later, I had found exactly what he drew and ordered it – we just had to wait on a larger TV. This was an incentive – a better bribe than the candy used to get him into the car for therapy!
We hooked up the webcam and every night David had a chat with his dad, who remained in Ohio. He would join us every 6 – 8 weeks, which gave me time to concentrate on ‘raising David again’.
David was amazing. I purchased a set of portable phones with a base phone and didn’t know how to put them together. I left the box with him and walked into the kitchen to make lunch – and he had them not only together – but hooked up and working!
And we talked – or mostly David listened and I talked about everything and every three or four days I introduced a new thing – as insignificant as combing his hair to tying his shoelaces – from cleaning his shaver to helping with the dishes. I found things for him to do while sitting in his wheelchair; and ever so slowly, he started to do things on his own. By August 11, the daily tracking sheet I kept stated that he got up on his own, took himself to the toilet, and was dry all night!
I am a caregiver -Triumph at last!