Don't attempt this alone. Just don't.
When I was a kid my brother watched Inspector Gadget. I did not like this show. Nor did I like Dark Wing Duck. Let’s get dangerous! When Inspector Gadget got a note, the note would give him some sort of clue, or maybe an assignment, and then at the bottom it said “this note will self destruct”. I wrote this on my son’s lunch box note the other day and he thought it was “real creepy” because he was not born in 1979. Also, yes, I am so cute and I write notes to my son in his lunchbox.
This is Dark Wing duck.
But Inspector Gadget has a good point. When our parent is given a diagnosis that our heart begged not to be true, some of us turn inward, thinking that this is some cute, personal, mental health type thing that we will just handle on our own. We will just take this note of a diagnosis, put it in our pocket and HANDLE IT. But that is when we self destruct. We can not keep the management, care and heartache of Alzheimer’s to ourselves. And I don’t mean this in some cute way, like- oh, take care of yourself. Get a manicure sometimes. No. You must be VIGILANT about your self care- planning and scheduling daily moments of quiet reflection, or loud workouts or angry crying with a friend.
The care I need the most, that is the hardest for me, is to slow down and do nothing- or very little. So this is me attempting last week, to sit and watch Queer Eye while eating popcorn even though everything wasn’t DONE yet. Yup, my shoes are on the couch.
Last week I had therapy and the therapist kept talking about “reserves”. She was not talking about the abundance of reserves I have. She was talking about the reasons why I am quicker to anger than I would like, or that I feel most days like I have “nothing left” at the end of the day. She was talking about why I don’t feel generous with my time most days. Why time feels often wasted instead of spent. She asked one way that I build some reserves and I said I feel better when I feel like I’m part of a bigger community. So today, I want you to take these three minutes and pick someone below to add to your community. They will help you build your reserves, remind you that you are very much not alone.
There are 11 million people providing unpaid care to someone living with dementia or Alzheimer’s. If they are the social media type, please send this list to them and then email Patti to tell me what other sites/people should be included.
This is a picture of me building my reserves on a beach. We might have driven 12 hours to get there, but we made it to a beach in December and that is pretty awesome. Also, my wavy hair was having a MOMENT here. Go hair go!
Your “community” might be virtual- and it is still a valued and necessary community.
@alogcabininbrooklyn- “We are the bad ass women who juggle it all, but still want to feel good.” Written by Nikki Nurse who is a millennial caregiver to her Mom. Her writing is so encouraging. She reminds me daily to take care of myself, which is WAY more than getting a massage once a decade. She has practical advice about delegating, grief and how to prioritize yourself while caring for someone else. You can see her story here. And buy her jewelry here.
@iamgertrudejordan - Oh this beautiful woman makes me cry! Her Instagram site and In Case I Forget Consulting website are written by Ty Lewis and are so beautifully done. Ty trains caregivers and professionals on Alzheimer’s and really speaks to the importance of finding your voice as a caregiver. I love the way that she talks about taking respite and being honest about the reality of being a parent and caring for a parent. She is caring for her mother who is truly an excellent dancer. Ty’s website is www.incaseiforgetconsulting.com.
@momofmymom - This was the first first person I found on Instagram talking about care-taking that I really related to. I loved her honesty and her ability to express her sadness. Her videos include tips on caregiving, how to include music, how to get someone out of a car and how to be patient when being with a parent that has dementia. Her website is momofmymom.com and you can buy t-shirts or mugs there as well.
@belightcare- Super practical tips on how to care for someone with dementia. Written by Adria Thompson, who is a speech language pathologist and a dementia consultant. If you are caregiving for someone with dementia, you really need her tips. She is a teacher of all things dementia and has some excellent ideas and practical tips for helping those we care about. Her website is www.belightcare.com.
@alzassociation - National association to help those caring for family with Alzheimer’s, encourage advocacy and promote research and fundraising. You can find more about how I use them here and their website is here.
@wearehfc - Organization started by Lauren Miller Rogan and Seth Rogan to encourage young people to talk about their experience with caregiving and dementia. They have a particular focus on those under 30 caring for family with dementia. Follow them for talks with experts on brain health and to hear Lauren speak honesty about what it was like to care for her mother. Website is here.
P.S. You can always find resources here.
Now go get dangerous like Dark Wing Duck and send this to a friend that is caring for someone with dementia.