I’m all shaking trying to type today because I went to the gym and the gym is an ass-hat.
I think this post is better targeted for people who have been more recently diagnosed…and important. Boring, maybe, but important nonetheless.
Because, without the tips and the suggestions, your interpersonal relationships with family and friends is going to suffer, and your interactions with healthcare professionals will be strained. Confusing, even. That helps NO one.
So? Who exactly are “caregivers”? What “level” do they commit to as being called a “caregiver”?? How many “air quotes” will this post actually contain?!?!
For example, primary caregivers can included partners/spouses and primary healthcare professionals…doctors, dentists, etc.
Secondary caregivers can include people such as friends, extended circles of family (your second cousin, Marvin?…maybe not)…professionals that enhance your healthcare team, such as chiropractors, acupuncturists naturopaths, massage therapists, etc.
*this is a perception of my own…there is no set “list”…this is from my own experiences dealing with multiple healthcare relationships… in short, I made this shit up myself…feel free to add in your own!*
Now that we’ve identified “caregivers”…what next?
From professional healthcare…I’m sure it’s no big stretch to believe that your GP will preside over physical checks, medications, testing…that massage therapists will make you feel like warm butter…that your chiropractor will snap, crackle and pop the joints back into alignment.
Where it gets tricky, is when you consider the interpersonal relationships.
Well, let’s start with:
Acknowledgement – as a patient, I need to know that you “believe me.” Sounds crazy, doesn’t it. I need to know that you will listen and try to understand the logistics of disease (whichever afflicts you) without blame or a “sucks to be you” attitude.
Validation – kind of wrapped up in acknowledgement, but more so from friends and family…it’s the understanding that something is “askew” and that it’s okay to ask questions. It means you believe me and are trying to understand. It means you will continue to invite me to events, even while knowing the commitment will always come in the form of a “maybe”…and that you’re totally okay with that.
Self-Care (for themselves) – most important for spouses/partners or parents/guardians!! You need self-care like you need air. True story. If you do not attend to your personal needs and wants, if you do not give yourself permission to “take a break”…you risk straining your relationship to an irreversible extent.
Communication: Unless you can do the Vulcan mind-meld…start talking. It doesn’t matter if it’s written down if you can’t seem to find the right words…if it’s recorded and played…hell, make a damn Youtube video…You MUST (I cannot stress its importance enough, but, given the typing hassles I’m currently experiencing…you’ll have to trust me on this one) keep the lines of communication open, no matter what. I believe it is essential in order to prevent misunderstandings, misinformation and stress from the unknown. This can, over time, lead to relationship failure.
Believe that you will not be able to heal your patient – I think this is critical…especially when so many caregivers get exceedingly frustrated that they want to just “take it all away…”. You cannot. What you can do, are the things that will allow your patient to recover from testing or flares…or things like finding the time for their own self-care.
Patients AND caregivers need to each articulate expectations and limitations. Boundaries.
Example: After a heart attack, I really didn’t expect to be shovelling snow. I thought this was obvious. It was not. So, I have to learn how to approach situations such as this with either better information, stronger outlines of limitations, or….something. I’m working on it.
I could spew tips and tricks to caregivers in a novella…but I think it also just as important to stress to the patients they care for to take ownership of their health. It will augment the validation that both professional and personal caregivers will be prepared to give to you.
Example: Make a list of things you’re working on, or have already accomplished. Quitting smoking, maybe. Going back to the gym. Cutting out processed foods. ANYTHING that adds to health benefits will be taken MUCH more seriously than if you were to post a status or tell your doctor about feeling like shit…when your sugars are high because you eat like crap. All. The. Time.
Neither patients nor caregivers have issues any “more” important than the other. NEVER invalidate someone’s thoughts or feelings. The challenges are of the same level, same emotional state…but just “different.” You need to work together, not make it a “one-up” challenge.
Incorporate a “health and self-care” section of your “family meetings,” if you have them.
If you can’t physically go “out” for a date night…pre-plan a list of a few things you’d like to do, or were maybe saving for a rainy day…boardgames…do some puzzles together…hell, get whimsy and learn a craft or a hobby. There’s this thing called “Pinterest”…it’s a way to put into bulletin boards ideas that you find on the internet. Bestest part EVER, is that you can just search other people’s bulletin boards…they’ve done the web surf…you reap the ideas. 😀
Being a patient takes work. It’s difficult to maintain your identity when you find that you’re always thinking/talking/researching everything “disease” related.
Being a caregiver takes work. It’s difficult to understand the emotions of someone facing very real health threats, and not being able to heal them…all while maintaining your own sense of identity separate and apart as an individual.
It’s an ongoing process that is dynamic…challenges will change…there will always be the need to revisit communication techniques to determine the state of balance and expectations within the limitations of both patient and caregiver.
Use forums. Find other people going through similar challenges. Take classes or counselling. It’s not weak…
…it’s just smart caregiver/patient-relationship management.