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I’m caregiver lonely. How can I be lonely living with three kids, a husband, my Dad and my dog?

My husband and I are going through this caregiver journey together yet I’m still caregiver lonely. We both are.

What does lonely mean to you? To me, it is a big, bad, ugly word. When I think of it, I first think of my three young girls – the fear I have of them walking into the cafeteria, looking around, and finding no one to sit with.  No table with that inviting smile from a friend. Breaks my heart just thinking of it.

An isolated kind of lonely

When I think about life caring for Dad I feel lonely big time but in a different way.  Not as much sad lonely, like the experience I fear for my girls. It’s more isolated lonely.  I feel entirely unprepared for decisions I’m forced to make everyday.  Small ones like finding things to try to get him/keep him engaged or make him smile. And the big decisions, like picking the best assisted living for Dad, adjusting a medication, or moving him out of that assisted living and into our home.

I know I’m not the only one going through this, but it certainly feels that way in those lonely moments where someone caring for Dad is looking at me for what to do next. Or worse, when Dad himself looks at me that way.

As caregivers, we need to build our networks and Matt and I are trying to do just that. Connecting with others going through similar experiences. I know that each caregiver’s journey is different than the next but we also can relate to each other on so many levels.  We share many of the same frustrations, struggles and unique challenges.

How to best support your loved one in this or that,

What equipment is best to help with X, Y or Z,

How to manage your emotions,

Retain your sense of self,

Manage self care,

How to keep your loved one engaged,

Legal blocking and tackling,

How to prevent your caring role from consuming you,

Find the right home care,

Find the right living situation.

The idea sharing does happen in pockets on the internet and offline.  I can go to the Lewy Body Dementia Support Group on Facebook for answers from peers to specific LBD questions. I’ve worked with a fantastic Geriatric Care Consultant who provided invaluable support through particularly stressful times. Matt finds #carechat on Twitter and the r/caregiving subreddit to be helpful on a range of caregiving topics. But they’re all just pockets and can be hard to find for someone just starting their journey.

We need peer-to-peer idea sharing on a larger scale

The groups I mention above are tremendous yet one-to-one or relatively-few to relatively-few in terms of audience. Especially when you consider that 34.2 million people provided cared for a loved one in the last 12 months (according to this article by Morningstar.)  Matt shared a couple tremendous resources in this recent post that have wider reach…but it’s still a drop in the bucket compared to 34.2 million people.

We need to be support for each other, across the entire gamut of caregiving challenges. From the super emotional to the just-do-it tactical. Take for example finding the right assisted living or home care for a loved one. We’ve done it three times, and it felt like a crazy, sales-oriented, real-estate transaction (unfortunately) each time.

Every time I went for a tour at an assisted living facility it was the same experience. Out walks the sharply dressed community representative with the big smile.  I tried to make a connection with them but gosh, they’re so flatly a salesperson that it just felt fake the whole time.  They show you the community, pointing out all the beautiful aspects of the building. Lovely lobby, beautiful piano in the corner, lofted ceilings, light classical music.  But really… really… I didn’t care.

The people make the community, not the amenities

Dad wasn’t a twenty something moving into the hottest Boston condo complex. I do understand the hospitality aspect to the business, but I wasn’t prioritizing these things.  Who will be there when Dad sees bugs on the ceiling at night?  Will they let him call me? They better.  What if he doesn’t feel like eating. Is someone keeping track?  These care details seemed low on the list of the big tour.  

And honestly they were hard to figure out even after a few conversations with the staff.  What I really wanted to do was learn from others who’d been through it. Only by sharing real experiences and real stories can we understand how our parents, spouses, or grandparents’ everyday reality will be while in someone else’s care.  

Sharing for each other

Let’s share our stories with each other….for each other. On a larger scale instead of pockets. Honest stories about the pros, the cons, the favorite staff, what to look out for, what to push for etc.  Just people helping people who are going through something similar, by sharing the practical realities as they experienced them, for the purpose of helping. Only helping.

We’ll be educating each other so we can be best informed and make the right choices for our loved ones.  We don’t have to be lonely, feel misguided, or be a cog in a lead machine. 

Sharing an experience isn’t about a star rating for a community or an agency. The words and the thought are way more important than the stars. It’s about helping the person that comes behind you know what it’s really like. And about helping them feel a little less lonely in the process. It might even make you feel less lonely too.  

A new standard. For us.

From adjustments in medications to decisions about whether to push Dad to get up and walk when he feels weak–making decisions for Dad and about Dad is pretty much at the core of what my role is.  But wait- where was my training? Where’s my mentor? Teacher? Medical professionals you ask? Well, they are there….for the once-in-a-while big questions. But I can’t look for their advice on everything. So I need the help of my peers. And my peers need my help.

The more voices, the better. Just about everyone is, has been, or will be a caregiver. Yet the experience stays in the shadows where caregiver loneliness and isolation persist.

Not until more voices are talking about it than not, will caregiving be fully out of the shadows.  

And maybe then I won’t be caregiver lonely.

 

Have a loved one in senior living or receiving care in the home? 

Please consider sharing your experience in the form of a review. It’s as easy as 1) clicking here 2) searching for your community or agency of interest 3) registering in two steps (no phone number needed and definitely no telemarketing) 4) Leaving your review.

It will take 5 minutes or less and your contribution will help someone else. If you don’t see the community or agency you’re looking for, please email matt@roandsteve.com and we’ll get it added quickly.