Stepping Out of the Shadows: Caregiving Tips & Tools

Two months have slipped by since my last tips & tools post. Caregiving has been quite consuming in an emotional, mental, physical, and spiritual sense. This seemingly never-ending East Coast winter has also taken its toll. But I believe we’re finally coming out of the shadows. Finding new solutions and care team providers. Finding a new normal. Finding victories and breakthroughs and seeking more. Focusing on what matters and freeing ourselves from the rest. 

Here are this month’s tips, with extras to cover the last two missed:

• TIP 1: TELL YOURSELF THE TRUTH. After a difficult appointment with my caree (one of many over a few weeks’ time), I found myself venting to a loved one about feeling tired, frustrated, betrayed, guilty, and defeated by the lack of support, answers, or direction — despite reaching out for help. But then I quickly said, “I’m OK, I’m OK, I”ll be fine.” A lie. A lie I’m sure many caregivers who feel the need to be OK, to be strong in the face of difficulty, tell ourselves. And while we will be OK and fine eventually, we need to spend some time being honest in the moment. In those moments, we’re not OK. We’re not fine. Let’s allow ourselves those moments.
   
• TIP 2: DROP THE EXTRA BAGGAGE. If you’re a caregiver, you’re already carrying more than your share. We all have tough things in our lives. I’m not suggesting you can leave all the baggage behind, because some of that baggage is part of your story. But unnecessary guilt, shame, regret, or fear? Ditch it.
   
• TIP 3: THINK BEFORE YOU POST. If you’re sharing your caregiving journey with the online world, think about what you’re sharing — and how your caree may feel about it — before you hit that “post” or “publish” button. 
   
• TIP 4: GO SLOW. I like to move fast. I enjoy being productive, and I’m comfortable with a busy schedule. But over the last few months, I’ve felt the need to be more intentional about moving slowly: in my work, in my mindset, and even in my physical pace. It’s not just on days when I’m tired. There are some days where I just don’t feel like racing through the grind. As caregivers, we don’t always have the luxury of going slow. But we can be aware of our pace — and how an adjustment, when possible, may help us heal, reflect, or grow. 
   
• TIP 5: LET YOUR CAREE BE FREE. There’s so much to love about this story of a farmer diagnosed with Lewy Body dementia. But what I find particularly interesting and worthy of mentioning is the way John’s wife has still given him the respect, space, and freedom her husband needs and wants, despite his diagnosis, despite the fact that he’s had some falls requiring stitches. A diagnosis doesn’t take away personhood, and John & Chris Volz are shining examples of maintaining that personhood. And because of it, look what John’s hands have built!
   
• TIP 6: GO AHEAD AND CRY. Sometimes, there’s nothing better, nothing more healing, nothing more freeing than a good cry. Caregiving is lonely. Caregiving is HARD. Caregiving is all-consuming. You can only be strong and tough for so long. Today, give yourself the gift of tears.

And here are this month’s tools: 

• TOOL 1: FREE TELEHEALTH TRAINING FOR DEMENTIA CAREGIVERS. The New York University Caregiver Intervention (NYUCI) study is extending a final call to caregivers to receive FREE(!) year-long telehealth support. To participate, caregivers must live with a spouse/partner with reported memory loss, be comfortable using a computer, and have a family member/friend willing to participate. Caregivers in NY, VA, AL, TX, or WI should reach out TODAY to be connected with a counselor with open capacity. Contact Tadessech Hailu at NYU by phone (646-754-2291) or by email: tadessech.hailu@nuymc.org no later than April 30th.
   
• TOOL 2: CLIP GRIP.  A universal container attachment that adds a convenient hand hold to any container, Clip Grip was originally created as a fun drinking accessory. But its creators got the most feedback and positive responses from people who live with arthritis, Parkinson’s, cerebral palsy, and other neurological disorders and physical impairments. Learn more about Clip Grip here.
   
• TOOL 3: CAREGIVER SMILE SUMMIT. Imagine being able to listen to 52 caregiving experts (I’m one of them!) share on a range of topics without buying a plane ticket, booking a hotel, or setting up respite care. And you can watch the sessions over and over. That’s what the $97 all-access option of the Caregiver Smile Summit offers. Register here.
   
• TOOL 4: FREE ASSISTED LIVING SEARCH. Thinking about assisted living for a parent or older adult in your care? You can search for and compare local options with this free tool.
   
• TOOL 5: CAREGIVING ADVICE FACEBOOK GROUP. I’ve created a closed group for caregivers of any age to ask questions, make connections, and seek resource recommendations about their caregiving situation. Join here.
   
• TOOL 6: HIGH-QUALITY INCONTINENCE PRODUCTS. Incontinence is an especially challenging aspect of caregiving. Check out the top-of-the-line, imported from Italy products from Egosan, the intelligent choice for incontinence. Sold on Amazon, these adult diapers and briefs are designed for active adults with incontinence, and for caregivers seeking the very best products for their loved ones. Shop now.
   

What does this young carer from the UK fear the most about caregiving? To find out, read my latest Voices post, which tells the story of Alicia, age 15, who cares for her Mum.