There are two types of people. Those who are care givers and those who will be.* Life is a chronic condition. Eventually every one has an illness, disability, or injury and needs help.
Nothing can prepare you for the care giving experience. You yourself need help. Takes a village and all that. Cancer care is a particularly grueling experience. I know. I’ve lived it. My beloved died of aggressive “triple negative” breast cancer in 2012.
Sadly, most people forget about the primary care giver. The people who do remember are awesome. Amazing as they are, well meaning people may behave in ways which will cause the care giver duress and/or more work. You can avoid being that person. These are the things which made made my time as care giver more difficult and painful.
Showing up uninvited
We had a death bed crasher. Whaaaat? Yes. We announced we were closing ranks and only having close family there because death was imminent. This person showed up anyway, half an hour before she died, putting themselves at the foot of the bed and edging out her mother and brother. I was extremely upset about it. I wanted to be in a peaceful loving head space while I was helping my spouse transition. Now I had to manage my WTF DUDE?!? rage. The best I could do was re-frame it. This person loved them so much they were compelled to be there and could not help themselves. It’s the most charitable thing I could imagine. Another beloved quietly asked this person to leave and thankfully they did.
Forgetting why you’re there
When you’re there to help, help. Especially when it’s a direct and immediate request. We had people stay over who offered assistance with care, then refused to do a task because of a personal priority that could have been done at a different time. Your stuff shouldn’t come at the expense of an immediate need like helping move the patient who is uncomfortable. Be flexible or don’t offer your services. Understand that the patient is the highest priority. Refusing a request makes you a jerk and it adds to the care giver burden. They have to do the task themselves and also cope with managing you.
Impatience with the patient
Sick people are cranky. They’re in pain. They’re dealing with the emotional burden of illness, especially if they’re terminal. They’re on drugs which cloud their judgement and self-control. Sometimes they lash out. Returning fire exacerbates things and further upsets the patient. Refraining from that is one of the most difficult things a helper can do. Be an adult. Process your stuff elsewhere and get help for your feels at another time. Otherwise you’ve added to care giver burden. They have to take care of you and the patient who is now more agitated all the while dealing with their own upset at you for being an immature ass.
Neglecting go-ahead
Delegating sucks mental bandwidth. Taking initiative is welcome when it’s blatantly obvious something needs doing. Cleaning is a big thing. It’s safe to wash the dishes you see pile up when the the place is crowded with visitors. When you see the cupboards running low on coffee and crullers? Replace them. It’s critical to make suggestions for bigger stuff. Consider the results. Will the caretaker be pleased or will they have more work because you’ve done something well meaning but unhelpful? When in doubt ask! Getting the go-ahead takes minimal effort and prevents wasted time and energy.
Failing to follow instruction
Find out how and when to do the task. This goes with getting clearance to do it. It isn’t helpful if the care taker has to fix or redo what you did.
Forgetting the concentric circles of care
Read “How not to say the wrong thing.” Learn it, live it. I can’t count how many times people foisted their own shit on me. I can not emphasize this enough. If you can only manage to adhere to one tip, pick this. It’s distressing for the caregiver because they care about you and don’t want you upset. You’ve just added to their emotional burden and taken up valuable time they need for patient centered stuff. This is not about you.
Disrespecting the spokesperson
It’s not uncommon for the family to designate a single point of contact if you have questions about the situation or want to stay in the loop. Go to them for information. Follow their directives. Trust that these are from the caregiver and not initiated by the spokesperson. We had a couple of people argue with the spokesperson or insist that they were special and exempt from doing as asked. We had many bypass the spokesperson and continue to directly contact the caregiver. Crowds of people want to be updated on the patient’s progress, good or bad. You don’t want to be among the number of people bothering the caretaker, even if you think it’s a positive contact. You don’t know how the caregiver is going to receive your communication. For me, I would tear up whenever anybody asked me how I was doing. I was compartmentalizing and ignoring my own terror and pain about the situation. Inquiring about my well being put my attention on the stuff that was so overwhelming it would paralyze me from doing the things that really needed doing and only I could handle. Trust that the spokesperson is communicating in both directions and your well wishes and requests are passed on appropriately.
Giving advice
This should be obvious. Refraining from giving advice is in the concentric circle of care instructions but it really bears repeating. Giving unsolicited advice is disrespectful of the patient and caregiver’s choices. Medical professionals have obviously been consulted. Concerned family have done all the research on prescribed care. Trust me. Sharing your knowledge – when asked for it – is ok. Otherwise, you come across as pushy.
Every situation is going to be unique. My best suggestions are to be observant, think through the effect of anything you chose to say or do, follow all instructions, and continue loving patient and caregiver with all your might. Hugs and notes of encouragement always are welcome and helpful if you’re at a loss for what to do.
Ultimately, the love is going to overcome any inadvertent missteps. I’ve had nearly eight years to reflect on my experience and I harbor no bad feelings. My friends and family are still my friends and family. The excellent support far far far outweighed the negatives. At the time, however, they truly knocked me down. You can avoid making a horrible situation worse if you stop, think, and proceed with care.
*Unless your heart is made of stone.
The older I get the less fucks I have to give about what others think about me. That’s been a fabulous perk of getting older. The very best things are yet to come. I occasionally take selfies. I like this one. I use them to either check that I don’t have spinach on my teeth when I don’t have a mirror handy or to see myself in a positive light. Then they’re usually deleted.
