I recently chatted for the first time in a while with a friend, Marnie, who moved to Europe many years ago. Her husband was recently diagnosed with Parkinson’s. In my effort to get my story out there (with jokes), I realized I’ve overlooked a big piece of the Parkinson’s picture: the caregivers.
These valiant souls give their all to their loved ones, and it is a Really. Hard. Job. No one applies for it. No one expects it. You don’t get paid in either money or even thanks. But you do the job because you love someone. Or maybe you don’t but you feel obligated in some way. Now THAT must be really hard.
I thought Marnie might have some insights, so I asked if she might allow me to share some of her story. So here goes, from my transatlantic conversation with Marnie.
Marnie: Bill was diagnosed with Parkinson’s in early 2021, during the first COVID lockdown. I knew already that he had it. He had a tremor, plus quite a few other tell-tale symptoms. But it was still hard to hear it confirmed. The diagnostic consultation is NOT the moment for the partner to say “I told you so!”, but I was tempted!
Andi: Now that you and Bill have a sort of routine, how do you refresh yourself? What keeps you going?
Personally, I find other partner stories massively helpful. I have a friend who nursed her husband through eight years of dementia, which is different of course, but she really understands what it’s like gradually to change roles from partner to carer. Also, she’s a nurse. I’ve found nurses, and people like physiotherapists with hands-on experience with people with Parkinson’s, to be exceptionally empathic and respectful, with lots of practical advice. Other than that, all the usual good advice applies. Take breaks, get exercise, nurture your own interests and friendships too. I fight every day for my independence and sense of accomplishment, but to be honest, as the more domestically supportive partner, I was doing that anyway.
Andi: Do you feel other people treat you differently, knowing what you’re going through?
Marnie: I do. Mostly people are very kind, but one of my closest friends is a lovely woman who still doesn’t quite get it — and worse, she doesn’t know that she doesn’t get it. I feel I have to remind her that there are limits to what I can do, or that I have to plan differently now for the future. Also, some people tell me horror stories that I really don’t need to hear. I’m very well informed, but I want to stay optimistic and focused on the present. I’m working on just letting misunderstandings pass.
I would say the best that friends can offer is simple empathy and warm companionship. We are all much more than our illnesses, after all, and we need to have fun. At the same time, saying things like “He looks fine to me” — or talking about unproven herbal cures they read about “somewhere on the Internet” – can be surprisingly hurtful, because it minimises the seriousness of these illnesses. Maybe it’s a way for people to protect themselves against discomfort or fear.
Andi: What’s the hardest part of caregiving for you?
Marnie: The impact on our daily relationship. I have to do more, and be watchful, and things keep changing. And the future is so uncertain. I’m practical and resourceful, so daily stuff gets done. Emotionally it’s tougher, and I have a very elderly parent to look out for as well. Accepting uncertainty just isn’t my strong point.
Andi: Is there even a sliver of a silver lining in all this?
Always! Bill’s less driven, his sense of humour is intact, and we love hanging out with our beloved dog and going for slower paced walks. We have enough money, I hope, for care if we need it down the road. We live in a friendly place. It could be worse, too. Aside from the PD Bill is strong and healthy, and I’m pretty fit. Bill still works part time from home, and he gets a lot out of his work. I’m learning more about myself and other people, even if it’s not always comfortable.
Andi: Can you share something that led to you and Bill sharing a good laugh? Maybe he said something ridiculous, or you had an experience that was so silly that you couldn’t help but giggle?
Marnie: Moments of laughing together are priceless, and luckily we see the ridiculous in the same things. We’re quite competitive with each other, and we tease each other. So we laugh a lot – but not about Parkinson’s. The day we do that will be a special day, because it will show how comfortable we’ve both become with it.
Andi: Thank you so much for sharing your story, Marnie, with so much candor and heart. You and Bill are fortunate to have each other. As are the many others who lovingly ( or maybe some days not so lovingly) do what they can to create a decent life for their person with Parkinson’s. Thank you all who are doing this work; I hope you feel appreciated.
Every morning, Clara Parkes sends you a little nugget – it could be a poem, a video clip, an image – whatever strikes her fancy that day. I love starting my day with Clara (also knitter extraordinaire), who is thoughtful and seems quite wise. I feel a little calmer tonight knowing that tomorrow will be a little bit more serene thanks to Clara.
8 thoughts on “Our Caregivers, Our Heroes”
Andi…. As usual, this blog is wonderful…. But this one… not so funny… quite serious, in fact…. And very informative…. I’m saving Clara’s contact info and intend to share it with several people ( if I remember… now, that’s funny!)❤️I love you, Andi…
Sent from my iPhone
I’m glad you enjoyed it. Yeah, I couldn’t find a way to inject levity into the post…and that’s okay sometimes.
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Thanks for sharing your friends story with us. Some people don’t realize that it is difficult for the patient, but also difficult for the caregiver.
Wonderful, and I relate to all of it. My mother was just like your friend, and took amazing care of my dad. All the best to you, Andi.
That was from me, Francey.
I’m glad you found it relatable. My friend marnie will be very pleased.
Clara’s daily affirmations sound lovely.
Good friends should not be afraid to offer help in the form of respite. Like asking if the couple or individual would like them to get something from a store, or bringing something anyway. Friends could also offer to stay with the person who may be more housebound so the caregiver can get out for some alone time. Offering to take the caregiver out for lunch, a movie etc is also vital – all of this is to prevent caregiver burnout. There are dozens of ways to support the caregiver, you just have to ask!
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