By Miriam Drake
First and foremost, be good to yourself. I cannot emphasize this enough! Ask yourself, “Without me, where would my patient be?” The point to remember above all else is to delegate early in the process of the illness or recovery, so that you avoid the bane of caregivers everywhere: severe burn out, cancer, your own death. Once you understand what is happening and that you have a patient to care for, organize your thoughts, then delegate as much as possible, as soon as possible.
Remain sane and healthy by delegating. No one talks about the health risks of caregiving, but those risks are real. Delegation gives the caregiver valuable time off regularly to rest, think, enjoy some peace and quiet, to forget about her cares for the moment, and to enjoy expressing herself in conversations with friends and family. It is important to get time away from the patient, and to express your feelings honestly and openly with someone who is willing to listen actively and not judge you. Do not let stress build up inside! There, I’ve said it again!
To delegate, first make a list of everyone you know. Hopefully you are already an active participant in a Care Community. Take some time to think about which tasks need to be done. Use the task list I have created for you below as a starting point, and find out what people want to do to help. Then put together a schedule of who is doing what, along with the day and time of the week. Keep this organized. I guarantee you will forget things. Be easy on yourself and find the humor in screw ups! They will happen.
Just remember, you will have funny stories to tell your friends later. But for now, you will plow through your responsibilities. There were times when I was so stressed, I’d forget that someone was scheduled to come over to help us with shopping or visiting with my husband, giving me an hour off. Of course, we were home, but I was surprised! And then there was that episode when I was super tired and stressed and it was time to give Fernando his bedtime medicines. It doesn’t make any sense now, but I took Fernando’s blood pressure medicine by mistake. UGH. Scared myself pretty badly with that one. I was afraid I wouldn’t wake up the next morning. Fortunately, it only acted as a great diuretic! I was fine. Funny!
During your time as a caregiver, you may go through some very dark times and have some very dark thoughts. This is normal and natural. Count on it happening to you. There are dark things that occur which are actually quite funny. Dark humor has its place in caregiving here. Laughter lightens the load. I was lucky to have Peg in my life. Her husband had late stage Parkinson’s and she knew the dark side quite well, and better than I at that point. We spent hours commiserating and howling with laughter at the dark stuff that happened to us and to our men. It’s amazing what’s funny when you are dealing with all the challenges and things that go wrong! Better to laugh!
My late husband had had a stroke, and two emergency surgeries all of which occurred within a 10week period of time and required hospital stays. After each time he came home, and got into bed, within 10 minutes he invariably fell out of bed while I wasn’t looking. Once I realized this was going to happen no matter how well I prepared, we started finding his routine darkly humorous, looked at each other and burst out laughing. Sometimes you just need to laugh at the craziness!
And then there was the time when Dr. Rodas Jr. saved Fernando’s life. Fernando’s gallbladder (and it’s a long story I won’t go into here) needed to come out. It was a crisis life or death situation. The morning after the surgery, I walked the long 5 miles to the hospital to visit my husband, not knowing whether I would find him alive. I was exhausted. As I entered the hospital room, I was relieved to find him in bed, awake and looking at the attending. At the side of the bed was a medical resident with an opaque deli container in her hand. This was week 10 beyond the stroke and the bladder surgery, now the gall bladder had been removed after an exhausting night in the ER, and I was beyond burn out. I was shot. She handed the container to me. I looked at the container and said what’s this? She replied that it was his gall bladder. I handed it back to her and told her that I didn’t want it. Her response made me laugh (dark humor). She looked concerned and said, we need to check immediately for cancer. It was the biggest gall bladder they’d ever seen, and the hospital lab was booked up and so they needed me to take it to a private lab right away. At that point I told her I don’t care if it’s cancer. His gall bladder is out, and that’s all we cared about. I’d had enough, and there was no room left inside of me for any more drama or anything else to do. My attitude was, if it’s cancer, so be it! I was cooked. She looked at me in disbelief (probably not knowing any of the recent medical history of this dear man). My response was for her to talk with Dr. Rodas and let him decide what to do. I never heard back, of course.
One last story. This one is just simply dark. A cardiologist, whose name I will never utter again, had put Fernando on double the dose of blood thinner that was working just fine! Our G.P. Dra. Rimbaldo had prescribed it for Fernando 6 months earlier. On the dose the Dra. had prescribed, my husband wasn’t having another stroke and he wasn’t bleeding to death. A fine line that she had navigated successfully for Fernando. While the dose was perfect, someone had told Dra. Rimbaldo that the patient needed to be managed by a specialist. Go figure! So, once we started the double dose prescribed by the (cocky arrogant) cardiac specialist, Fernando began slowly bleeding to death. Six months later, we ended up in an ER in the middle of the night in crisis mode. He had lost so much blood during those past 6 months that he was finally in shock. To my amazement, none of the hospital doctors could figure it out! In their wisdom, the 5 doctor cardiac team took my husband off the blood thinner completely. After 2 weeks in the hospital, with his off the charts atrial fibrillation throwing off blood clots like popcorn, I decided to take him to FASEC for his final weeks of life (hospice care). I remember standing in the hospital hallway waiting for the transport crew to come pick Fernando up and take him to FASEC to rest in a private room. The young medical resident stood next to me in the corridor trying to convince me that they could do an angioplasty (balloon treatment in an artery) to protect the heart from blood clots. I couldn’t believe the logic. Here he was dying. He was a big candidate for another stroke any minute, and clearly the heart would be one of many possible targets. Dark humor again. I told her no, he’s going to FASEC. He’s dying! …Unreal!
Back to you as a caregiver: In addition to caring for your loved one, remember to take care of your own body too. This means a diet rich in nutrients. It is also good to do things to stretch the body like yoga and let the stress out through other forms of movement such as dancing, walking, and running. Get outside in an unpolluted area and breathe. The trees exhale oxygen and need the carbon dioxide we exhale. Do yourself a favor each day and take walks in nature, surrounding yourself with living, breathing organisms!
Volunteers and friends can help you with tasks:
- General helpers who daily help the caregiver with the little things like getting the patient out of bed and walking with assistance
- Errands of all sorts
- Grocery shopping
- Scheduling appointments
- Bill paying
- Medicine and medical supply inventory and shopping
- Taking the caregiver out for tea or lunch
- Listening to the caregiver and brainstorming solutions
- Taking the caregiver out for “walk and talks”
- Going with the caregiver to exercise or yoga classes
- Helping the caregiver get what he/she needs, like time off…such as an afternoon off, or a weekend away, or a month away from home and away from the patient for recharging his/her batteries
My advice to the new caregiver is to delegate right away and to stay connected with friends, Nature, your Care Community, your family and a good counselor. Take good care of yourself. Take good care of your body. You will get through this. If I can do it, you can too!
Miriam Drake, M.Ed., L.M.H.C., N.C.C. has experience working in health care administration, and now is a psychotherapist in private practice serving adults via electronic media internationally. Place your order for your copy of the revised 2020 edition of “Expat Medical Emergency Preparation Manual” by writing Miriam at: firstname.lastname@example.org.