In business one way to find out what is actually going on in a process, is to staple yourself to said process. It’s a phrase that is used to describe following a process from beginning to end in minute detail to locate the problems, slow downs, redundancies, weakest links and much more, to improve the process. It has been used to improve turnaround time in getting invoices sent out to assembling jet engines. With a business there is planning, structure and organizing a team to undertake process improvements. Just the fact that you are improving them means there is a process already in place to improve. In caregiving you are thrown in the deep end before you come to grips with what is happening to your loved one. You do the best that you can, making it up as you go. Even if you have gone though a similar situation like this before, every caregiving experience is as unique as the people we are caring for.

When my Sister and I had to return to our homes and jobs after my Mom died, we were leaving my Dad in the care of a live in nurse during the weekdays. My Mom had been his caregiver until she was diagnosed with cancer, then it was hired help, when we were not at home, caring for both of them. By then it was six years and a lot of rehab since his stroke. He was paralyzed on his left side, but he had worked so hard to get as much mobility back that he could walk with a quad cane, but his left arm and hand never came back to functionality. He needed help getting out of bed and dressed for the day, meals cooked, laundry done and help with a shower. With the installment of a stair chair he had the run of most of the house. We were both scared to leave him, the live in nurse at the time was actually a nursing student and she would not be with him 24/7. We where trying to fill in the gaps when my Dad swore he could do more if we would just let him and he did not need as much help as we thought.

So began our process mapping my Dad’s day. The week after my Mom’s funeral my Sister and I started. We wanted to test to find Dad’s limits without putting him in any danger. First we mapped out his day from waking up in the morning to going to sleep at night and everything, I mean everything, in-between. What if he was on his own for an entire day. What could he do and what, more importantly, was to dangerous to even attempt. Once we had written down everything, every move he’d have to make it was time to staple, or in this case tape ourselves, by that I mean my Sister, to the process. I taped my sisters left arm and hand down, in the same position which my Dad held his arm, then taped up her left leg in an attempt to impair it to the same degree as his.

I need to stop right now and tell you that one of the most important things you need as a caregiver is people who keep you sane. A sister that goes along with all your hair-brained ideas without question, a best friend who knows when to cry with you or give you tough love. Friends who text they are at the grocery store, what do you need. Ok, back to the taped up sister.

From this experiment we learned a lot, he could do more, and with a few changes in the house, and instructions for both him and visitors he could do even more. A office desk chair on wheels helped him move around the kitchen without his cane, freeing up his right arm and hand. When you have very little control over one of your legs, as you bend to sit you reach a point where you lose control and plop down in the chair. The back of the chair had to be against a wall with the wheels in a certain location, back wheels flat against the wall but front wheels not in the way of his feet. Since he could only control pressure on his right foot to push himself up traction was an issue. Non skid tape found at any hardware store was put on the floor where his feet were placed, blue painters tape also went on the floor to help him judge his path when he needed to make turns while walking. Most people with mobility issues walk with their eyes on their feet not where they are going, the blue tape helped keep him from bumping his shoulders into doorways.

He could dress himself in a pinch, but what took a couple of minutes with help took him an hour or more. We shortened that time by putting together an emergency outfit, clothes that were within easy reach and easier to put on with only one working arm. Friends and family visited and brought him meals to eat later. How do you take plastic wrap off a plate with one hand? You don’t! We wrote out on poster board size post-it notes instructions for people to rewrap the plates using Press’n Seal and only have it covering and sealing at the rim of the plate. We had a stack of Press’n Seal rolls at the ready for them. And the jumbo post-it covered the lower half of the refrigerator with wrapping and placement instructions.

I could go on and on about what we did and how we had jumbo post-it notes everywhere, but the point is about stapling yourself to the process. It is not only to help someone who is physically disabled. It’s about finding the bumps in the road and smoothing them out. Caregiving is very emotional and exhausting. You might not think you have the ability or time to take a step back and review the daily process you and your loved ones go though, you also could push back and say your day can change on a dime, no two days are alike. Lets address those, first you have the ability, you are a caregiver, you can do anything, you are a badass! Time, well you don’t have to do it all at once. Break it down into sections, morning, noon and night, or start with one process get that one working well and move on to the next. Take a month to work through your typical day, work at your own pace and ask for help if you need it. Yes, your typical day can change at any given moment and no two days are alike, however, everyday has processes that are repeated. Getting your loved one up and dressed, using the bathroom, brushing teeth and washing face and hands, meals and so forth and so on. Even non daily events can be planned out and added to your routine. Doctor’s visits, Go Bag for hospital trips, planned and emergency trips, outings of any kind.

As my Dad’s mobility declined we updated our processes, these are not in stone these are meant to adapt. One of the points of this is to take a step back and look at any process logically, remove the emotion, or as much as you can. What does your loved one struggle with everyday and what changes could be make to the process. It could be as easy as posting photos by the sink showing how to put toothpaste on the brush because they don’t remember how or having the brush set out with toothpaste already on it for them because they only have use of one hand.

AFTER - The Aftershocks

I had not planned on writing about this today, but when did the universe ever care about my plans.

Last night a family very close to me lost their Dad/Grandpop. He had dementia and he was declining, but his death last night was sudden. I don’t know all the details yet and even if I did I would not put them in this blog, that is my friend’s story, not mine. On a table by my front door I have a bag of supplies from my time as a caregiver, that I gathered yesterday for his daughter, my friend, after we spoke earlier in the day. I had planned to walk them over to her this morning so she could take them to her parents, or drive over to her parent’s house and drop them off.

I’ve am sad today, I have been crying on and off. I am sad that we lost a really wonderful, kind man, I am sad for my friends and the entire family. With all that said, I am sad too because I am having aftershocks, or at least that is what I am calling them. All those feelings of loss and heartbreak of losing my own Dad are hitting me hard, shaking me up. I am definitely on firmer ground now then I have been, but these aftershocks happen.

I have described my grief as coming in waves and aftershocks. A waves hit me out of the blue, sometimes I don’t know why, other times it’s something that reminds me of my Mom, Dad, Aunts, Uncles, Friend… I found a note one of my Aunts had written to me the other day, her still familiar handwriting caused a little wave, years after she has been gone. I could hear her voice in my head as I read the note, that made me feel good. Somedays I just miss my Dad more then others, no special reason for that day or another, I just have lots of waves hitting me on those days. Time plays a big factor, the further removed from their death the smaller the wave. But sometimes out of the blue, no matter how long it’s been, I get slammed by an unexpected wave.

Aftershocks are different, I hear about someone else going through something I have experienced and I am right back, emotionally, to my own experience. Not to long after my Dad died, another friend’s Dad died, aftershock. One of my Sister’s best friend’s Mom died and together she and I went to the Funeral Mass at the same church that held our Dad’s, big aftershock. My BFF’s Mom, who I loved, died this past April, really big aftershocks, plus grief for her passing and lots of big waves. My own Richter scale is made up of a combination of data, how long since my own loss, how close I am to the person who died and the person like me who has lost someone and how closely their situations resembles mine.

Today’s aftershock is a big one, but I’ve learned they are a normal part of grieving, and I’ve also learned how to stay on my feet though them.

Denise