Initial Return Home

I thought I was well prepared for Frank’s return home from the hospital seven weeks after his stroke. Ha! This homecoming tested me more than I had ever been tested before (including at one point in our lives moving five times in less than two years with three young children while I was working full-time).

Without a doubt, this whole experience of integrating a seriously handicapped person back into our household has been the most difficult thing I have ever done. Let me make it very clear however, that after weeks—no, months—of problem-solving and adapting, things really did get better. New routines were established, many new items were purchased, expectations changed and we learned to live again after a major stroke.

If you are in the midst of that first transition home, please remember this. Things did get better for us later on and they can for you, too. I believe humans have a remarkable ability to adapt, at least if they allow themselves to be flexible and are willing to adjust their expectations.

Two weeks prior to his hospital discharge, we brought Frank home for a couple of hours along with his physical and occupational therapists from Spalding Rehabilitation Hospital. They were the professionals who knew him better than I did at that point. They helped him navigate around the house and made a detailed list of the things we needed to add or modify.

With the help of friends and family, we did all 16 of the things on the list including adding grab bars, raising and stabilizing chairs, modifying steps, and getting rid of all throw rugs. I was able to check off everything on the list. I had visited two rehabilitation stores the day before his discharge and purchased such things as foam tubing to put on the handles of his eating utensils to make them easier to hold, a bib, a leg lifter and even a card holder for him as a Christmas gift in hopes that we would eventually be able to play family card games as we had always done. (It hasn’t happened yet.) We were “ready.”

Well, the day he was to be discharged, December 20, dawned with weather reports of an incoming blizzard (turned out to be the first of three major blizzards in succession, causing havoc in the city and impacting our transition for a couple of weeks). The easy 30 minute drive home turned into a 2½ hour ordeal. That’s okay, I was well rested and felt confident in my ability to handle this new situation one step at a time. After all, he could talk and walk (sort of).

When we finally arrived home, the problem-solving began in earnest. Each little problem was not such a big deal, but the accumulation of little problems was exhausting. He could walk the few steps from the car and mount the two steps into the house with his quad cane and support from me. Now, where do I put him while I run back out to the car to get his wheelchair? He needs the wheelchair for sitting and moving around when he is exhausted. (Next time, I’ll bring the wheelchair in first.) I know, I’ll put him on the toilet since there is a grab bar there. That will help him to stand up.

Once we get him to the kitchen table in his wheelchair, I need to find a blanket to put around his shoulders since he is cold. The blanket can’t be too big or too heavy. I need to find the pills he has to take right now. It seems to take forever to read all the labels on the 10 prescription bottles to find the right ones. (I eventually numbered the lids of each prescription so I could find them quickly.)
The phone rings and it is a dear pharmacist making sure that I understand all of Frank’s prescriptions, their possible side effects and when to give them. (After drawing out several charts, I eventually made an Excel spreadsheet to indicate which pills to take at the 5 times each day he needed them. It is easy to modify as changes are prescribed.)

Meanwhile, he is hungry and complaining. I am so busy trying to get everything done that I am oblivious to how frightening this whole homecoming must be for him. He had become accustomed to the routine in the hospital and now he is venturing out into a new world with his limited capabilities and total dependence on me. Every move he makes requires thought on his part. I had no idea how exhausting the day was for him.

It is now two years later and I’m still struggling to comprehend the enormity of the effort required for everything he does. Frank was overwhelmed with the disruption to his routine and I just kept trying to make things as normal as possible. (Continuing to try to make an abnormal situation into a normal situation has to be one definition of insanity.)

So, we have to decide which size spoon or fork or cup or plate to use. I have to thicken his liquids to aid in swallowing, get a box of tissues and a wastebasket to put by his chair while he eats, cut the crusts off the bread, get a couple of straws, and on and on and on. His liquids are too thick, his tea is too cold, his shirt is uncomfortable, he needs his toothbrush but I’m still okay because I am relatively well rested.

His new obsessive compulsive tendencies were not really irritating me yet but had me scurrying around to try to keep him happy. It would be hilarious now to see a fast motion video of me running back and forth from the table to the kitchen and then upstairs and downstairs and upstairs and downstairs again.
The phone continues to ring as family and friends worry about the storm and wish us well. I am still in good humor and think I am okay until the man in a big truck comes by with the oxygen machine (how he made it in the blizzard I’ll never know, but he deserves a gold medal) and proceeds to tell me how to use it and about washing the filters each week and about how to use the backup canisters if we lose electricity. I stare blankly at him and tell him that all of this had better be in writing for me because I am not processing anything that he is saying. I am no longer thinking clearly and am now in total overload.
And we haven’t even gotten to bedtime yet…