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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Gift Guide for People in Nursing Homes

If someone you care for is in a nursing home, you may be struggling to think of something useful to give this holiday season. They don't need much and what they do need changes quickly. I've made a gift list for nursing home, Alzheimer's and dementia patients to help you navigate the murky waters:

 

A picture phone can help an old person use the telephone with less stress.

A touch-dial picture phone can ease an elderly person's stress about using the telephone. Once familiar objects become confusing and those new-fangled cordless phones with all the buttons just aren't gonna work. Set the phone up for your Aged P. ahead of time - pictures included. If your Aged P. has dementia you might consider using a photo of the person from many years ago - older memories are often more stable than more recent times. A person with dementia might also do better with fewer choices - a four picture phone vs. ten as pictured here.

 

Bright colorful clothing will make nursing home staff respond more positively to the patient.

 

I work in arts management with a heavy side of theatre. Trust me when I say that there is a great deal of science behind the art of the costume. Snazzy loungewear like this top from Old Navy will make a big difference for your old person day-to-day. A bright, stripey top like this one will stand out in a dementia unit (or any kind of unit) and encourage a positive response to the patient from staff. Sad, but true. Jeggings. Because who wants to end their life in a pair of Walmart sweatpants? An orange cardigan. Things that are cheap, comfortable, and easy to launder. If you can find something with a little polyester in it so it doesn't shrink? That's not a bad thing. Staff don't take time to read care instructions. And things always need to be replaced. My experience is that my Mom burns through clothes pretty quickly. Pajamas, socks, and underwear would also be very useful items to send at the holidays.

 

A pair of Skechers will be both snazzy and functional. The lace-free elastic is great for arthritic hands and makes the slip-on shoe snug and supportive. They give your Aged P. the stability they need to get around but don't look like this. My Mom is the snazziest person on the memory ward.It makes a big, big difference in her mood when staff, family, and friends walk in and give her a huge smile because she's super cute.

 

Handwritten letter subscription available from projecth.etsy.com

 

My handwritten letter subscription is a nice gift. You will never be able to give your parent enough training on The Email to allow them to use it the way you wish they would. Give up. Old people live for postal mail. LIVE FOR IT. They are clustered around the mailboxes every day anxiously awaiting the postie's arrival. There are signs posted at the nursing home reception desk that announce whether the mail HAS or HAS NOT arrived yet that day.

If your old person is in more advanced stages of illness they probably just want mail from you. Caregivers can always help read and share your news if your loved one is no longer able to read. Can you set a goal of a couple of postcards a week? Can the postcard be an old photo from your shared memory book? Twice a week sounds like a big commitment, but a week is an eternity for a person living in care. Remember that this is a relatively short term commitment. Can you reach out to friends, neighbors, colleagues and others and share the nursing home address, encouraging mail? This would be one of the best gifts you could ever come up with.

 

 

Consider hiring someone to do an oral history. This gift has a dual purpose: First, it will preserve precious family memories for years to come. Second, it assigns a work project of real importance in the patient's life. My sister did this for my Mom and it was a great idea. More than the book that came out of it - my Sociologist Mother enjoyed her weekly meetings with the archivist and the feeling of satisfaction that came from being on one last project. It's not cheap. But it was worth it.

 

 

With your parents' permission, arrange and pay for a trip to see an elder care attorney. They won't want to spend the money. Have the difficult conversations while parents are still able to participate and put them down on paper. Make them feel secure about how their end-of-life decisions will be handled. Execute Power of Attorney decisions for finances. File paperwork to protect their assets from caregivers. Make it clear which of the kids is responsible for what and identify who won't be able to handle it. I discovered in our elder care meetings that I supported my Mom's wish to "flip the switch" if it came to that, but I wasn't going to be able to do it. Better to know, now, than to be sorting through it at the last possible moment.

 

 

Soft toys are good company for a person in the later stages of Alzheimer's. Find a squishy, washable toy that's really huggable.

 

Gift cards for caregivers in a nursing home is a great idea.

A gift card to a store like Target. Not for your old person, but for each of their caregivers from your parent. It doesn't have to be much, but it is a helpful gesture of thanks to an overworked employee. Your parent's caregivers probably earn less than $10 an hour and deal with all the stuff you don't want to know about. Like the snazzy outfits, it helps caregivers see your parents as more than a room number. And everyone craves appreciation for a difficult job done. Right?

 

Here's a quick list of gifts I think you should avoid and/or discourage from friends and family: 

Avoid soaps, lotions, perfumes, candles and other cosmetic items. They may irritate sensitive skin or trigger allergies in other patients. Staff may just remove them from the room for safety reasons, anyway. Your Aged P. may be perfectly capable of knowing what to do with them but things tend to migrate to common areas or other rooms. You don't want someone in a more advanced stage of dementia drinking perfume. 

Avoid books and magazines. As sad as it is, your old person probably doesn't have the ability to concentrate and enjoy reading as they did before. They will pile up in the corner and you will just have to deal with removing the clutter later. They DO enjoy being read to - I read family papers and old letters to my Mom when I visit and she really enjoys it. She can remember many things from her childhood and family stories about her grandparents. She also just enjoys listening to my voice.

Avoid blank cards. I donated a garbage bag FULL of blank stationery from my mother's home.

 

I think that covers it! What other gifts are good for people in care? I'd love to hear your thoughts!     

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