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. :)