A Wonder-filled Three Weeks
I like to think of myself as a reasonably good planner and preparer. And as I’ve aged I notice that I spend less time on planning than on being prepared. In case you haven’t noticed, plans are fragile things. The flight taking me to my dream vacation is canceled because of weather 700 miles away. The dinner plans disrupted by an emotional eruption. And so I’ve learned to be prepared for the un-planned. There are those who chuckle when hearing that I carry a Swiss Army Knife in my bag. But hey, I saw the movie where the guy was hiking alone in the desert canyons and a boulder fell on his arm and trapped him there. He had to cut his arm off with the cheap knife he grabbed as he left home, instead of taking his usual good one. I want to be better prepared, not for the planned, but for the un-planned. And so it happened that 6 days before leaving for 2 1/2 weeks of business and family travel that I got a call from a local Nursing Home telling me that a bed was available for my 1/2 sister who has been imploring me to ‘spring’ her from her current Home in Manhattan. I had planned on doing this after returning from our travels.
It was, again, time to plan: 1) hoping my favorite hotel had a room, 2) getting a wheelchair, 3) locating parking, 4) synchronizing discharge and admission, 5) staying calm and sane. There was no wiggle room except for the staying calm and sane part. Thankfully, all went well until….
For Want Of A Cigarette
Let’s have some compassion here. She’s 79 yrs old and has smoked for a long time, and there was a designated smoking area at her place in Manhattan. I had even seen employees and residents smoking in the parking lot of the new place within the past month or so. So I was quite surprised when one of the ‘intake professionals’ informed us that this was a non-smoking facility, inside and outside, end of discussion. There ensued an emotional eruption of near Biblical proportions. For my 1/2 sister this was a deal breaker. My Swiss Army Knife may have had some value in a fantasy of mine but in reality it was worthless to me now. I’m digging deep to find some other tools in my bag but the calming words and de-escalating techniques I found, simply, were not working. She was throwing her clothes from the bureau drawers into her bags, and planning on wheeling herself out of there all the way back to Manhattan. Meanwhile, there are 5 Health Care Professional employees trying to cope with their own emotions and not knowing what to do.
Naturally, I left. But on my way out, the Administrator suggested e-cigs, and I proceeded to track down where I could get some. Twenty minutes later, and $33.00 lighter, I returned with enough e-cigs to, hopefully, carry my sister through the next 2 1/2 weeks. We made ourselves at home in the sun room with the three beautiful birds in their cages and proceeded to learn how these e-cigs worked. For the first 3 minutes, or so, my sister was puffing so hard that the cloud around her reminded me of a “Cheech and Chong” movie. I returned the next day to help her acclimate, plan for how she’s going to manage during my absence, and touch base with facility staff. I haven’t seen her since I returned yesterday and I wonder how she’s doing, and I hope she’s doing well.
Living With Uncertainty or Survival Skills For Care Givers
We do this quite well, every day of our lives, and barely give it a second thought. I think I first began to notice that I was giving uncertainty a second thought when I began to have responsibility for someone else. When I had to provide care: all those things that are for the well-being of another. It was when we had children that I really began to wake up to the reality that it was a good idea to expect and anticipate that things may not go as I had planned. I don’t think I’m a nut about it. For every Plan ‘A’ that I make I have only one Plan ‘B’ in the wings. But I almost always have a Plan ‘B’. So, as a Care Provider, or Care Giver, I can more easily roll with the changes to my plans in response to the uncertainty of the needs of the Care Receiver, and everything else beyond my control.
Giving Care and Self Care
The title of Caregiver, or Care Provider, is one that in all likelihood, may be worn by most of us at some time or another. In the context of Mindful Dying, the care is being given to one who will not ‘get better’, although the principles are the same for all. This Caregiving is a ‘noun’. It is giving something concrete and finite, the care, to someone else. We’re giving care. It is task oriented, and focused on the physical needs of the recipient. It is care of the body and the environment. In my first days as a Hospital Aide I learned just how exhausting it was to give food and medicines, to help someone wash and toilet – or do it for them, to have clean linens and bedclothes, to have supplies. This is some of what I learned:
- Develop a routine! The person I’m caring for may not do the same thing, in the same way, two days in a row but, for my well-being I need some structure. There are too many tasks to be done to leave them to chance. Routine also reduces anxiety, in me and the other. Start by identifying those things that are time sensitive: treatments and medicines. This gives me a baseline of the person’s physical functioning. There will be no question about a person’s change of status being related to a missed treatment or critical medication. From here I schedule my own self-care. At the very least this is setting aside time for a healthy meals and personal hygiene. Having a routine is also critical in managing visits by secondary caregivers, health care professionals, friends and family. If they come to help, then you’ll know what needs to be done and when. If they want to come for coffee or chat, we’ll know what times are better for that also.
- Be prepared for anything. This is the Organization piece and, if left un-tended, it can be crushing. There are everyday bills to pay, medication refills to get, cleaning, home and vehicle maintenance, etc. a) Develop a system to stay up to date and organized. This, also, reduces stress and anxiety. When the next surprise jumps out, at least, we’ll know the status of our ‘affairs’ and with a clear mind we’ll be able to think – “Oh yes, here it is” – and carry on. A caveat: In no way am I implying that there will be NO anxiety, or fear, or frustration, or whatever when the un-planned happens, nope. Personally, my stomach may roil, heart rate increase and hands sweat but, because I am prepared, I can move through the surprise. b) Learn how to handle emergencies. In the first days of caring for a gentleman with ALS and on a Ventilator I kept reviewing the Emergency Procedures Manual. I kept getting stuck at what to do if the power went out and the batteries were running low. The back-up was supposed to be a portable generator in the basement, there was no portable generator in the basement. It is no fun to manually ventilate someone who cannot breathe for themselves, but I was confident in the skills I had learned – thank goodness. c) Have someone, or two, you can call on for Help! It would be great, and preferred, if we could all have regularly scheduled assistance to give us some time off. It’s very comforting to have someone to lean on. The next best option is to identify someone, or someplace, that can provide some respite, relief when you need a break. Within some communities ther are paid respite services available. Some have ‘friendly visitors’ who can come on a regular schedule. Nursing Homes and Hospitals also often have Respite Beds available for short term use. Check with local resources through the 211 Network, United Ways, Offices For the Aging, or even Hospice. The point is to keep looking until you find the help you need.
Above it was noted that in ‘Giving Care’, care is a noun. But when we say ‘I Care for’ someone, care is a verb, it is an action word of the heart. It’s an emotion. It’s ‘feeling tender towards’, ‘to feel concern about’ someone. On becoming a Hospital Aide, I quickly realized that I could accomplish the tasks of caregiving, within a good routine, and unless I felt tender, or concern for the recipient of my ministrations, my work would be cold, disconnected, and just one more chore. In some ways it’s easier to be tender to someone I’m not related to. After all, I don’t have a history of shared joys and sorrows, triumphs and failures, gains and losses. No baggage and all I may have is this one day to show that I cared.
Giving Care And Caring For A Loved One
Beyond the physical burden, there is the psychological pain of watching a loved one suffer. Sometimes this is the worst part. Sometimes there is conflict when caregivers have to put their lives on hold. This is a tough row to how, and not surprisingly, people who exhibit relief at a loved one’s death often say that during the loved one’s illness, life felt unfair to them…[Also]…pepople who are relieved by a death do not tend to find comfort in memories of the deceased, at least not at first…Over time, calm sets in… (The Other Side Of Sadness by George A. Bonanno)
If I Were God…
I’d include an instruction manual for Life. Being with a loved one(s) through vulnerablity is, I believe, one of the most generous and kind things we can do. And yet, the risks to our own well-being are often high. This is, obviously a TBC topic – This is some of the real nuts & bolts of preparing for the last great adventure of this life, be it someone else’s or our own.
My sister’s stay at the new Nursing Home has been eventful. I found her on a ‘locked’ unit when I went to see her today. Not happy.