So you didn’t send a covered dish and other conundrums- tips for relating to caregivers
Dear community, none of us wants to confront the unexpected or stark reminder of mortality, but we all know people who are facing healing that takes time or disease that changes things. It’s one thing to deal with an immediate event or tragic thing, but what about the situations where there is no one event, but instead a process?
Recently my husband had very unexpected open heart surgery, no small thing. And healing from it and how life is changed are no simple matter. In our early 50’s with no symptoms to forewarn, we were gobsmacked by a sudden onset that ended with quintuple bypass surgery. We are both overwhelmed with joy for a future and overwhelmed with the challenge of recuperation. Including the knowledge that the veins harvested last about 7-8 years. So while the heart surgery is a one big time event, the effects of coronary artery disease and continued lesser levels of intervention are our new normal. And some days healing is great and progress is thrilling. And then as Patsy Cline once sang, “Momma said there’d be days like this.” And after we got past the trying to walk and get to the bathroom and stop oozing days, it is a journey and not a switch to be flipped. There is no doubt that in every way my husband has shouldered the physical struggle.
But as a wise person pointed out when I referenced Michael having the much harder work to do, “don’t underestimate the effect of this on you (the caregiver). What I share is from the perspective of a healing person as opposed to an individual whose well being is diminishing.
I want to first say that thanks be to God, we are in a good place that gets better every day! But, as I have come out of the fog of being, I have noticed what perhaps many other people have and have written about, but I share it just the same- what has been supportive and what has not.
1. Please do not tell me a war story intended to “one up” my experience. I can assure you that the journey we made from the ER to testing, to catheterization to being kept clinically stable, to quintuple bypass was enough. We do not want to hear unsolicited war stories and help you process them. Nor do we want to feel like our experience is somehow insufficient to warrant care in its own right. Please do not tell me to be grateful for what has gone well. I am. Recently I was looking forward to a break from caregiving and serving as a pastor which is a different form of caregiving.
I went to the community Christmas tree lighting and had someone tell me how glad I should be that my husband was not her friend. Who wasn’t feeling well and laid down and when her husband finished taking a shower, he came out and found her dead. My husband just laid down for a nap-thanks.
2. Please do not make me the gatekeeper of your conscience. We are all busy- trust me, as a caregiver, I know. If you didn’t get a chance to make a casserole or never meant to, if you forgot to send a card, or never do, whatever. Please do not come to me and tell me what you meant to do and tell me you hope it is OK you did not. This forces me to tell you it’s fine with me (which it may not be, but hey) or to tell you I really didn’t have 50 people banging down my door, and then I risk losing your acquaintance. If you didn’t get that chance, or really didn’t want to, OK. Tell me you are thinking about us or praying for us. That’s fine.
3. Please don’t tell me to call you if I have a need. Do you know how many phone calls there are in a day? The insurance. Work, his and mine, doctors, nurses, therapy, pharmacy. Family. What means the most have been- the person who just texted they made my favorite salad and were leaving it on the porch- Bonus points for a container I do not need to return. The person who stopped by to visit on her way, and didn’t care that we clearly had not showered. The person who asked what we needed from the store- they don’t cook but got what I needed to do so. The person who offered to be available when we came from the hospital because they knew I needed to go the pharmacy. The person who saw me and just gave me a hug-because.
4. Some days I am not chirpy. I may not have the grace I normally do or should. Please remember it’s a long term journey and give me a pass.
5. Please do not tell me how to feel. I am extraordinarily grateful for timing and technology. My spouse has come a long way- but there is a journey. Please do not try to tell me he is “fixed” or “all better” or “normal again.” He is better. And while we recognize that it is hard to imagine the in between from great and extinct, that is where we are- grateful but progressing. It takes a slower pace, but we are grateful for those who walk beside us.
6. Please know that I am so very grateful but I may not write that thank you right away. Because I am healing too- my healing is not physical, but emotional. Sometimes after all the caregiving and house-tending, I cannot envision one more thing. And sometimes we have not slept through the night- 2 am and 4 am are sometimes awake times.
7. But please also know that your prayers and cards and emails and texts are a life line. We are blessed to be moving beyond quickly and in a way others do not.
8. One last thing- when you see that slow moving driver ( one of the things I was least tolerant of) – remember- maybe they are the exhausted caregiver, the person who got bad news, the person who had to wait too long at the pharmacy, the person who is having that bad day or one too many errands, or the person who just cleaned up a mess with grace but needs to grieve it somewhere else. Don’t be grumpy- pray for them.
So there you have it- a view looking back at the last couple of weeks. We know that even at the end, many others have longer and unsung journeys because as a culture we respond to the acute and not the long term. Please remember that some of Jesus’ greatest ministry was with the chronic.
And for those of you willing to just listen- not diagnose or fix- there are those who are grateful for the simple grace of accompaniment.