With hope that this saves newer caregivers a bit of stress, or at least the comfort of knowing someone else can relate to the same goof-ups, here are a few biggies I seem to be learning over and over the painful way:
~Your partner, best friends, and close family who you expect to understand your caregiver angst and be there for you, won’t quite get it. They usually won’t know what you’re expecting or need from them…
…..unless you tell them explicitly and remind them.
I hate this!
I want them to be able to just be there and know how to comfort me, but unless you’re really lucky to have a very intuitive or similarly-experienced support person in your life, you have to teach people who care about you about this new part of your life and how it affects you.
Taking the time to explain all this can be exhausting, so sometimes you need to lower your expectations and get support from strangers who are already in the caregiver mindset/loop at a support group or online forum. That’s one reason I started this blog. I had so much pent-up emotion and desperate need to share and connect regarding all these new issues in my life, but felt frustrated that my close people couldn’t quite relate, as much as they wanted to help.
~Write down what doctors and nurses promise to do for your loved one and put it on the calendar to remember to check that they actually followed through .
These professionals have great intentions and WAY too many patients. I was not unaware of their struggles, but we have had so many things fall through in the last month: phone conferences, prescriptions, referrals to specialists, etc. because in my mind I’ve been delegating certain tasks to them. That was wishful thinking. I need to help walk them through the promised tasks and follow-up afterward to be sure all the bases were covered.
~In many cases, the residential people we pays lots of money to take care of our loved ones need the same type of “management” as described in my doctor/nurse comment above.
They’ll promise you the moon when you sit in the sales offices, and you know somewhere in your gut that none of them will ever be able to do half the things they say your loved one will enjoy if you choose them, but oh, how you want to believe! You’re emotionally and physically exhausted, yearning to resume some semblance of your work/family/love life, not to mention trying to wade through all the paperwork, bills, and legal issues that have suddenly fallen in your lap. You fantasize about being able to have a few days to yourself because Mom will be so busy enjoying the tantalizing activities, spa baths, gourmet meals, and all the lovely things being described in the shiny brochure.
The dumb section of your brain that ignores that the spa room is never in use when you walk by, the actual menu in the dining room seems to have 7 variations on hamburger helper for the week, and the residents who are supposed to be engaged in activities are asleep in their chairs. If you can’t get feedback from a family already living at the facility, do as much unannounced snooping as you possibly can, and don’t second guess any pangs in your gut or strange feelings you have about ANYTHING. Those feelings will be magnified once your loved one moves in. Keep asking hard questions, write down the answers, and show the salesperson your notes and ask if everything is writing is accurate.
~Long-distance family members and friends often genuinely want to help, but it’s hard to get their support if you’re not really specific about what you need. They rarely can do much to lighten the load unless you delegate super-specific, manageable tasks.
If you’re fortunate, they’ll offer to call and send letters and will tell you to ask if you need anything, but the calls and letters will cease pretty quickly when they don’t get responses, and needing to take time to call people and ask for help each month is not only difficult, but time-consuming.
You need a system in place so your loved one’s support people can delegate themselves and you don’t have to think about it. Ask for each person who offers help to pick a specific day to call, so that contacts are spread out over the week, and so it’s easier for it to become a routine.
If you ask for specific dates for helpful visits, like on your parent’s birthday or for a specific event in town like a garden show or state fair, the promised visit will be much more likely to actually happen. Saying “Mom would love you to visit” or “Come visit soon!” just doesn’t seem to work as well as using a tangible, defined period of time.