Care for the Caregiver: When You're the One Who Lives Far Away

My Mom was a big reader. Here she is "reading" a book in the dementia care unit.

 

An email came through my box with the subject line: "Care for the Caregiver." I didn't read it. There's so much out there on this topic but it all says basically the same thing. You know, stuff like...nurture yourself and be in the moment and sh*t like that. And while all of that may be true - it's actually not that helpful. If you're a caregiver, you know what I mean.

And what I mean is, when you're in the thick of a caregiving crisis, you can't really ask anyone for help. There's barely enough time to address the patient's needs let alone your own stress. When the immediate crisis settles then you have your own personal crises - neglected work and home responsibilities - to respond to. It's a lose/lose. 

When I finally did read that email it was just as unhelpful as I expected it would be. The kind of advice sounds helpful without actually being helpful. That got me thinking: What *do* caregivers really need? We're into year four (or maybe five?) of my mother's dementia. What does my sister - the daughter that lives close by my mother's care facility - need? What do I - the daughter that lives far away - need? Here's my list:

Care for the Long-Distance Caregiver:

Coffee. You need coffee. Specifically with old friends and specifically with friends who understand that for this one period of time in your life you need them to drop everything and drive to you so you can have an hour of memories and laughs. That's real respite care. Every time I travel home I think I'm going to have the time to drive into the city to meet folks for dinner but it never works out that way. When I do have a second - I'm emotionally exhausted. I'm far away from the husband and pets who love me; my gym; my books; all the things that help me get back in balance. There are a million things to take care of and a million things to decide when I'm in town, it seems, and I want to do that so my sister gets a break. I feel guilty leaving my Mom since I'm never there. So I'm going to suggest that a good way to support a friend who is caring for an aging parent or a sick kid or spouse is to be willing to drop everything and drive an hour just to have coffee. Consider visiting the care facility and having coffee there with the aged parent included. Heaven is full of people who made time for coffee with their caregiving friends.

Offer to help with the physical work. Over the past four years, we've moved my Mom three times: from her home to the care facility; out of her office at the University and to the memory unit within the care facility. Each move required an enormous amount of downsizing, sorting, packing, donating, selling, and all-around misery. We had support from a FANTABULOUS organization called Rose's Daughters for two of the three moves. If I had any money, I would leave it all to Rose's Daughters. If you don't have an organization like that in your community perhaps you could help your friend with organizing and packing or taking things to charity shops. You would be astounded how hard it is to find charities willing to pick up furniture - there is always a need for a friend with a pickup truck. There's always a need for a friend who can help out just by stopping in to keep you company while you sort through your parents' stuff.

Air Miles. In a sudden crisis, I can imagine having to drop everything and fly home and the expense associated with it could be pretty crazy. If you have lots of air miles, perhaps you could offer to do a swap - they could pay you for the price of a regular ticket ($400?) vs. the $1800 last-minute ticket and you could give them the miles. I'm not in that situation now, myself, but I'm sure many far-away caregivers struggle with expenses as I do. 

Listen. With Patience. Every stage of illness presents a new set of emotions for the caregiver to process. Dementia is especially tough, I think, because there is nothing to be done for it. Cancer has a treatment plan that (at least) keeps you organized and hopeful. Dementia is just the opposite. It speeds up and slows down. Her mind twists and rights itself again. Just when you get back on your feet your parent changes yet again and there's more to do and more emotion to process.

My mother had a TIA a couple of weeks ago and it signaled the beginning of something new for her. A shift from the deterioration in her brain toward a more physical manifestation of the illness.The decisions she made with a lawyer a few years ago about medical interventions were surprisingly difficult in the moment I realized she would not be going to the hospital. She would stay in her room and there was little that could or would be done beyond keeping her comfortable. Those were her wishes but it still broke my heart (for the millionth time.) Two days after her stroke, my Mom was back was on her feet and smiling again. It's a roller coaster.

I'm also afraid for myself and sometimes I want to talk about these things: What will happen to me? How is this supposed to all work out financially? Will I get dementia? And...again...How is this supposed to work out financially? Will I ever be able to maintain a "normal" schedule as a self-employed person (the only way to earn?) Should I get a regular job? Will a job limit my flexibility? It's not just the time away from my desk - it's the time it takes for me to get back in balance in my mind after leaving her.

That's my Mom in the photo above. I always take a photo of her when I first walk through those locked doors. Before she recognizes me I can see her and take in how she spends her days. She was a big reader all her life and you can still find her with a book in the memory care unit - even though she can no longer read and process information this way. It's sad to me that she can no longer do something she really enjoyed. It's sad to me that she enjoys going through the motions of reading just the same. Who can I talk to about that sadness?

Have you ever cared for someone with a chronic illness from far away? What practical suggestions do you have for helping people who find themselves in this situation?

Oh, and...buy a Mood Spray. :)

--Heidi

 

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How to Work Out Part One: What to Wear to the Gym.

How to Work Out:

Some Thoughts and Tips on Exercise

The other day a friend and I discussed our New Year's Resolutions over lunch. She told me that she wanted to get into shape but that she didn't know HOW to work out or what,exactly, to do at the gym. That kind of surprised me. I mean...It makes perfect sense, but I had never really heard it expressed in those words before. It got me thinking about the psychological challenges of being a "beginner." Starting anything is hard. It's easy to get discouraged by the smallest thing, right? If you've been going to the gym for awhile, it probably seems easy. But if you have NEVER been to a gym, it's hard to know where to start and you're probably reluctant to ask someone. 

I'm not a fitness expert or a trainer. I'm just further down the line. I'm a regular exerciser that runs, swims, and lifts weights. I lie and tell people I do yoga. I've been fat; I've been thin. I've stopped and started fitness programs again and again and again.

So, I'm somewhere in the middle, grey area of fitness. The mystery zone between the 5K and the marathon; a 1 lb. weight and a 20 lb. kettle bell. Lots of folks are thinking about New Year's Resolutions right now so it seems like a good time to talk about "what works!" I can't answer every question, but it seemed to me that I could give some pointers to newbies that a personal trainer would never think to tell you.

Eventually I'll figure out a way to tie this to Anti-Bad-Mood Sprays but if I don't? That's o.k. I just want you to be happy. I'm going to break this up into at least two posts; possibly more. I'd love to hear comments and suggestions along the way.

 

First: Find Some Workout Clothes that Work

  • Modest is hottest. Generally, if you're serious about your workouts you keep your bosoms inside your shirt and that's good advice for beginners as well. Short-shorts are just too short. Seriously. Very few people look good in them. You don't have to wear them. Ever. I wear capri pants at the gym year round.
  • Don't wear light colored sweatpants, yoga pants, or shorts. There are just too many things that could go wrong, including, but not limited to, the sweat marks that will show in the butt crack area.
  • Workout bras deserve a post all on their own. So check back in a few days.
  • Do invest in a pair of black "tech" fabric workout pants. My everyday choice are the capri GapFit pants from The Gap. They cover what needs to be covered and wash well. They are also a pretty reasonable price. Anything cheaper is a lottery ticket - it could go either way. How much is it worth to you not to have see-through workout pants that make a noise when your thighs rub together? $59.95 is a good price point for me. Personally myself? I have a hard time coughing up $100 for workout pants but I do have a few pairs of expensive compression tights for running. When you advance with your training, you'll know what other kinds of stuff you'd like to wear. Keep it simple for now; you can always invest in new stuff down the road.
  • Any comfortable shirt will do if you're just getting started. As you progress in your fitness you might find you have a preference for a moisture-wicking top or a tank instead of sleeves but it's not necessary to start out with a tech shirt. Just pick a t-shirt you don't mind getting all sweaty that doesn't make you look too much like a hobo.
  • Technical socks help. They really do. They give extra cushion and keep you from getting blisters. I wear Darn Tough by Vermont Sock Company. Buy two pairs.
  • If you haven't bought athletic shoes in awhile, you might consider a new pair. Get a good, stable pair of cross-trainers to get yourself started. As noted above - when your workouts advance, you'll know it's time for something more shazam.
  • I'm all about those Goody Slide-Proof elastics for my hair. I'm not sure why reviewers gave them 2 stars - I love them.

Thanks for reading! What are some tips and tricks you've learned about finding a good gym? Read mine here. What do you like to wear when you work out?

 

Heidi

 

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Why I don't "Crowdfund" or use Kickstarter

Heidi Rettig's Faux leopard coat and vintage bag.

This photo has absolutely nothing to do with mood sprays or crowd funding. I just wanted to show you my vintage faux leopard coat and the red bag I bought in Paris fifteen years ago.

Now, on to the point:

Every once in awhile a friend will ask me why I don't put the Anti-Bad-Mood Sprays on Kickstarter. I have vision for my products beyond what you see here (mostly marketing and sample sizes) but it's tough to leverage the cash to make some of those dreams come true.The crowdfunding concept is attractive and Kickstarter's success stories would make any entrepreneur want to try for the gold.

But here's what I've learned after working in philanthropy: there's no such thing as "free money." Here's another thing I've learned from a decade of helping nonprofits raise money: You can ask for money but you can only ask one time. No - really.

Think of it this way and your successful grant applications will noticeably increase: If you have just one opportunity to connect with a funding source - are you ready? Can you present a carefully thought out idea (you would be surprised how many people believe that a casual social relationship with a funder will be more important than have an actual idea to discuss.) Does your work fit the donor's funding interests? Is it a quality product? Will you pursue the goal with or without funders' support? Do you have the skills to pull any of it off? Because if you're not ready even though you swore you would be then you can't ask again. If you do get the money then you have a set of responsibilities to the donor. Are you prepared for that?

So much energy goes into the creative presentation of ideas - that's a truly beautiful thing and crowd funders do that really well. Where it often falls apart is on delivery. Because happens when you accept support but your end product is just, kind of..."meh"...? What happens when the idea never comes to fruition? That's powerful information you're sending to your community of supporters about your products and your abilities to pull it off. Botch it and you'll never be able to ask again.

If you've given support to more than one Kickstarter project the chances are you've received something pretty average in return. Okay, it's a gamble and not every gamble pays off. But would you give money to that entrepreneur again? Or just look for someone else the next time around?

Also, my experience has been that people get tired of the "ask." How many times have you received an email from a cause promising that they'll never ask you for money again? Never is as long as it takes for the next email to arrive, just a couple of months later. Like a guy on the street corner with a cup out - passerby eventually become indifferent to his plight. In the case of nonprofit arts, I don't think that your email list makes any distinction between the tickets you're selling as an "ask" and the quarterly plea for donations. An "ask" is an "ask." They will become indifferent to repeated requests. So what do you want the most from them? Ask for that. One time.

I don't crowd fund because I'd rather just sell you my truly beautiful thing - my Mood Sprays - because I am pretty confident you will enjoy the scent, the luxury packaging, and the humor on the labels. If you enjoy them you will return to the website for more. Mood Sprays are a real idea, in the marketplace, for real-time feedback. And the feedback and support from customers is incredibly satisfying. (Best "starter" mood spray for the novice user: Apathy - smells like fresh-peeled grapefruit!)

I so appreciate my relationships with the folks who have taken a chance on my products - it has been wonderful to get to know all of you and your candor over the past two years has helped me refine the project in so many important ways. Good reviews give me energy for the next steps. Thank you!

I feel good about every box I ship - I've hand-blended every bottle and I know that if it smells good enough for me it smells good enough for you. So, I guess from that point of view, I could feel confident about putting my work up on a crowd funding site. But honestly - it feels so much better when you buy Mood Sprays just because you enjoy them! Thanks for listening.

[steps off soapbox]

Heidi

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