Most of us whiz through our days doing all the normal jobs we do each day. We shower, we prepare meals, we take out the garbage, we go to work, we cuddle our kids, we snuggle down to a night in our comfy bed along with a host of other routine jobs we count on being able to do no problem.
May I take you on a trip where the normal disappeared and in it’s place was chaos, unpredictability and a feeling of helplessness.
A couple of weeks now, I was chatting on the phone at 9:30 at night just before heading to bed. Suddenly without warning, I experienced extreme pain in my head. I’ve had headaches before so I did not think too much of it but when it was a 10 out of 10 doozy of a headache all through the night, all through the next day and night and into the third day I decided to see my doctor. After hearing my symptoms, my doctor ordered me ( not advised or suggested) that I go straight to the emergency department at our local hospital and I did just that by ambulance.
Now here is where everything normal in your life suddenly goes out the window and you are in a totally new predicament. If it were just me to worry about I might have not been too upset but when you have a 90 year old mother sitting alone at home expecting you home to give her supper and later get her ready for bed ( including giving her insulin shot) life just got way more complicated. Here is where being prepared for anything can really save a bad situation from being a total disaster. I’m not saying I’m totally prepared for anything. Noone can do that. Life is just full of surprises that noone can count on. In the twinkling of an eye your whole world as you know it can change. BUT… we can do things to help us cope in the case of an emergency. When we are a caregiver it is essential that we have plans in place especially when we are a sole caregiver like myself. So… here are some of the things that I had already in place on that fateful day a couple of weeks ago:
- I run my house as if I were a nursing home ( which in many ways I am). I keep ALL Mom’s info on different agencies, her DNR, and all other important papers in a plastic file holder attached to the wall just inside our front cupboard. It is immediately accessible to anyone coming in.
- I keep an updated PLAN OF CARE for Mom which lists in detail ALL the agencies, their contact info, and all other people that deal with Mom like her hair dresser, her foot care person. It goes into detail what she eats at each meal, where all her meds are, what her routine is like, and also details things like when the garbage goes, what the cats eat, where to get their food, where I buy Mom’s foods she especially likes and where personal items of care can be found. This document is in the possession of 4 different people, 2 of which have keys to my house. They are each aware of the others and so can coordinate any care needed if I am unavailable and until my brother from 2 hours away can get there.
- I keep a copy of Mom’s list of pills she takes, a copy of her DNR and a copy of my own pills I take in my purse as well as a 4 page document of phone numbers I may need in an emergency.
- All Mom’s medications are in one place in a special bin in my bedroom so anyone can access them if I am not there.
- I keep a plastic zippered bag with fresh sheets, and a fresh comforter in it. It sits always in my bedroom in case anyone has to spend the night with Mom ( they would sleep in my room)
- I try desperately to keep my phone with me at all times when I am away and have it as fully charged as possible.
- Mom also has a lifeline so if something happened she could press it and they would get in touch with me.
- I try to make sure financially I always have some extra in case of emergencies or taking taxis etc.
So basically that is my preparation plan. It’s not perfect but it’s better than nothing. So back to my emergency I had 2 weeks ago. As I was in the ambulance heading for the hospital, all I could think of was what was I going to do about Mom?? It was already late in the day and she is terrified to stay by herself at night. I had to think quick. So here’s where my preparation aided this dilemma. Fortunately, I had a fully charged phone with me. Touche #1! Next, I had my 4 pages of emergency numbers in my purse. Touche #2! In between doctors coming in and out, asking me countless questions then sending me for a CT scan and then a lumbar puncture I began phoning people on my list. I am so thankful for Sandra, the wonderful lady who helps Mom and I out quite a bit. She agreed to stay the night ( and then agreed to stay a second night!) I phoned my good friend who came by to help confer with the doctors as she is a doctor herself and knew me so well and what I was dealing with looking after Mom and having autism. She mentioned to the doctors to be careful when giving me medications as I can be quite sensitive. Sure enough I reacted to the morphine and had trouble breathing. Unfortunately, my list of numbers was not quite complete and did not have the nurse’s company on it and I could get noone to come and give Mom her insulin. I was terrified I was going to be the cause of killing her somehow. ( that list has now been updated – that’s one thing about info while caregiving – it’s very fluid. It changes almost daily and updating info is so important) Also I was in so much pain that being able to hand the doctors my list of pills was much easier than racking my painful brain for what I was taking daily. One thing I wish I had that I didn’t was an extra key for my house in my purse to give to my friend so she could stop by before my friend Sandra could get there. Anyways, no plan is perfect. I will never say that you can be totally prepared but what I am trying to say in this blog is that there are ways to be somewhat prepared so that some of the strain and stress is alleviated in an emergency. We as caregivers have such serious responsibilities when caring for another often very sick individual that anything we can do to help with those blips in life is worth it.
I can’t not end this blog without telling one humorous tale in this whole story where life turned upside down for a while. I have to admit albeit ashamedly that my bedroom is usually a total disaster! One can usually not find a path to the bed without stepping on a variety of items. My bedroom is sort of a catchall for anything that does not fit somewhere else. In the back of my head I have often had the fear of “what if” someone needed to sleep in my room in an emergency?? They’d never find the bed!! Well, on the Monday that I came down with this severe headache I was feeling fine most of the day and I just decided that it was the day I was going to clean my room. I spent most of the day doing it, even getting down to the rug so I could vacuum it! I was so proud of my accomplishment. It looked better than it had in at least a year! So little did I know that that night someone other than me would be sleeping in my bed!!! I really think my God who knows all things knew that room needed to be cleaned and He just prompted me to do it. And he made sure I had a fully charged cell phone which I struggle to normally remember to do. God is all-knowing and I believe He wants us to be prepared in our lives but to also know that in times of chaos, we can rest in Him knowing that he never changes. He is the same yesterday , today and forever.
So, what was the outcome of my trip to Emerg?? Well, I was diagnosed with viral meningitis and spent 2 nights and 3 days in the hospital. It is now 2 weeks later and I am still recuperating with constant headaches all day long. I can’t do more than the bare minimum and I have been off work. It is something I wouldn’t wish on anyone but my Dr. is confident that in a month’s time I should be free of headaches and back to normal. Normal??? I don’t put any trust in that word anymore. I look at the word “normal” with a great deal of suspicion and fear. Normal doesn’t exist anymore. I go moment to moment with whatever comes my way and I just hope I am somewhat prepared for what will happen. That’s my new “NORMAL”.
A Grieving Autistic Adult 