WHICH HAT AM I WEARING?

Every day, I learn something new from another caregiver. 

Today, I was reading a conversation in a support group for spousal caregivers. "How can I cope with the resentment and frustration that comes from being so tired all the time?" someone asked. Another caregiver replied: "We wear different hats as wives. And remembering that can make a big difference.  "What hat am I wearing right now...? is a tool I use to check in with myself. It helps with my perspective, it helps with my energy levels, it helps with my stress levels."

The wisdom of caregivers, shared to ease the paths of others. I am inspired every single day. 

LOSING YOUR IDENTITY AND BEING A CAREGIVER

Guest Post by Caregiver Melanie Anderson - thank you for sharing your wisdom and experience, Melanie!

Being my husband's primary caregiver, for much of the time, his only caregiver, has taken it's toll on me.

One of my biggest challenges was losing a sense of self. As Eric's care got more intense and technical, it consumed my whole day. 24 hours of it for days on end. I was not the same Melanie. Not only was I mourning the loss of my husband as I knew him, but losing myself in all this as well.

Here are some tips I was given and I wanted to pass them on. I think these tips apply to many situations.

1. Look back at old pictures and remember activities you enjoyed before all this ALS crap went down. Think about what made you excited previously and bring that Melanie back slowly. Simply because my wifely duties and priorities have changed, doesn't mean I needed to drop all of my previous interests and hobbies.

2. Reach out. I'm good at this. Sometimes too good. But it's important to have an army by your side. Some who will be REAL with you too. Not just ones to blow sunshine your way whenever you're down. You need those too though so don't count them out. And you know what.. people want to help out. It feels good to make someone else's day a little brighter.

3. Reach out. I can't stress this enough. You can't do it all yourself all of the time. This illness has taught my kids so much about being humble and empathy towards others who are hurting. Showing your kids there's no shame in asking for help is also an important life lesson. They will have times in their life when being a mountain unto themselves will not work.

4. Journal. My friend Heather gave me a book to journal with in the middle of Eric's journey with this disease. I can look back and see how far we've come. The kids have gone through some really hard times. And I've felt like a failure. But, reading back at all that's happened and how well they're doing is reassuring. Maybe my parenting skills don't suck that much after all.

5. Don't beat yourself up. And don't be afraid to get some professional help if you need it. Seriously.

6. And don't forget that you KICK ASS. I look in the mirror every morning and tell myself this very thing. And yes, I really do. Do you know why? Because I really do. And you know what else? So do you!

Melanie Anderson is married with two children and they live in the Vancouver area. She is also a full time caregiver to her husband with ALS. Blessings are found in unusual places. 

The Ancient Wizardry of Caregiver 'Touch'

When Nick was very small and I was cutting my teeth as a disability Mom and advocate, I went to my first family caregiving conference. Two days in another city was respite for me - Jim looked after Nick at home during my short stay away. But some parents brought their small children to the conference. During a presentation by a government minister who was responsible for preschool education, a toddler with cerebral began to cry. All eyes turned to the Mom and her little boy. A white haired preschool teacher offered to take the child so his Mom could relax and listen to the speech. We all watched as this teacher gentled the child's stiff limbs into a comfortable and relaxed position in her arms. He quieted almost immediately. I remember the young mother blowing a thank you kiss to the older teacher.

The government minister paused and looked at the audience. He said, "Did you see that? That is 'the touch'. There are heroes of child rearing in this room", he said, "who have 'the touch' and we have just witnessed one."

Over the years, I've watched and learned from all kinds of wizards skilled in 'the touch'. Some were doctors, some nurses and many were family caregivers or personal support workers. All of them combined kindness with soothing action, creating a kind of alchemy of healing.

Recently, my Mom moved in to a new residence. I realised immediately that I was about to embark on a new journey of learning more about the touch and how it works with seniors. Commitment to deep respect and affection for elders in their care is the ethic of this residence, and it shows.

In eldercare, balancing older peoples' personal freedom with support is tricky. Too many times I have witnessed seniors being treated like pre-schoolers or worse. And the same is true of disability care. I've blogged about that topic previously HERE.

But Mom's best caregivers know how to cajole, soothe, and they know how tell stories as well as listen intently. They serve as invisible helpers making her needs seem less than they are. These clever helpers present the best of my Mom to the world every day. They are the keepers of wisdom in our society; they have 'the touch'.