Caring for the caregivers
If you are caring for a loved one with dementia, you are probably very tired and feeling incredibly isolated. In this month’s blog we are focusing on the family caregivers. Below you will find a story, a conversation, and some resources that will hopefully help you feel a bit less alone.
Rosanne Corcoran and the Daughterhood Podcast
I would first like to introduce my friend, Rosanne Corcoran, who cares for her 91-year-old mother with dementia in Philadelphia. Rosanne hosts The Daughterhood Podcast, a podcast covering caregiving strategies for aging parents. She also runs a “Daughterhood” support group for dementia caregivers in her local area.
Rosanne was recently featured in The Philadelphia Inquirer in a story titled, “Exhausted dementia caregiver wonders which will last longer, the coronavirus pandemic or her.” If that title doesn’t say it all! When the coronavirus hit, Rosanne didn’t feel safe keeping the outside aide that she’d hired for 4 hours a day, so she’s been handling her mother’s care as well as caring for the rest of her family on her own since March. I’m sure many of you are in similar situations.
Here is a short excerpt from the September 2020 article:
For months now, she has barely left the house. “You have four walls,” she said at a recent virtual Daughterhood meeting. “When this all started, it feels like you’re in a phone booth.” When she does go out, she worries she’ll bring the virus back with her, so she hurries home.The Philadelphia Inquirer—by Stacey Burling, September 10, 2020
Normally, Corcoran is an upbeat person. She’s warm, open, easy to talk to. For the first time in her life, she feels numb. It started in mid-April. “I think those of us with a brain thought, ‘Oh, crap. This is big. This isn’t just like a flu and this isn’t going to go away when it gets warm,’” she said. She thinks the pandemic will last at least until next summer. “Then you think, how long am I going to last in these parameters?”
Listen to caregiver conversations on podcasts; seek out dementia caregiver support groups
We encourage you to read the full article and check out the Daughterhood Podcast and Daughterhood Circles dementia caregiver support groups. Listening to the experiences of others and connecting with people who are walking a similar path to yours can be a lifeline. You are not alone.
Rosanne and people like her are active on social media, hosting podcasts and YouTube channels, etc. Take advantage of that. Listen to a podcast while you are doing other random tasks around the house. Check for a support group in your area. (There is a list of dementia support group resources towards the bottom of our Dementia Care Resources for Families page.)
Boomer Living Podcast interview with Hanh Brown
The second person I would like to introduce to you is Hanh Brown. Last week I had the pleasure of being interviewed by Hanh for her podcast, Boomer Living. During our conversation we discussed taking person-centered care from theory to practice, among other topics.
Taking person-centered dementia care from theory to practice
I explain in the interview that at the beginning of my work with dementia, I had to move away from the perspective of “a person who has been broken by a disease and is exhibiting symptoms” (or dementia behaviors). If we approach a person with dementia from that perspective, we are subjecting people to living out a disease and exhibiting symptoms with no possible cure. I found that to be heartbreaking.
Instead, what if we approached the person with dementia as just being a person who is experiencing a diminishing skill set? If we realize that, we can accommodate their losses and support the skills they are not losing. Just as we wouldn’t expect a child to use the same skills as an adult, we can change our expectations of what our loved one can and cannot understand, and adjust how we interact so that we don’t ask them to do something that is impossible for them. By doing so, we avoid inadvertently embarrassing them or frustrating them.
The path through grief and denial to acceptance
There is much more covered in the interview and I encourage you to give it a listen. I really appreciated Hanh’s personal perspective as someone who has cared for a loved one experiencing dementia. We discussed the journey of grief, denial, and acceptance that families travel through. Here is a small snippet of the interview that really touched me:
HANH: “Yeah. I’ll tell you. It’s a journey. It’s a journey for any family member, from the moment they first recognize (dementia), to the moment of acceptance— denial, then acceptance, then feeling alone, unprepared, maybe even shameful… It’s a whole journey of emotions that you go through. And I’m just really glad that we have a place that we can talk openly to bring awareness, educate, and just have people take it on as if it’s part of life. It’s part of an aging process and it is to be celebrated, no matter what. And I think when you can come to the place of celebration, that’s a big deal, because honestly there was nothing to celebrate in my mind when I first learned about it. In my mind, it was all decline. When you can come to the place where you can honor and celebrate and laugh and cry together, you’re doing the best you can for your loved one. When you can come to that place. Do you know what I mean? You can talk about it openly and laugh and cry, and it’s okay.
JUDY: (Yes!) There is so much to grieve for when you first begin to suspect that a loved one is going to experience dementia. You have to grieve for the changes they’re going to experience and the life that they won’t be able to live any longer. The way it’s going to change the family interactions. The way it will change every relationship that person had… …The most critical thing we can do is realize that once dementia does come into the picture, that relationship will be changed and we can’t continue to interact in the same manner as we once did…”From Boomer Living Podcast, Episode 62—November 15, 2020
We then go on to discuss the reality that although our loved ones may be losing rational thinking skills, they are not losing and still have full use of their intuitive thinking skills. Through our loved one’s ability to perceive things on the intuitive level, they are picking up on our emotions and nonverbal cues more than ever. Being aware of this is crucial and helps us mindfully begin to learn to interact in more sensitive and kinder ways.
Listen to the entire podcast here:
If you’ve made it to the end of this very long blog, thank you! Stay safe out there and be kind to yourselves.
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