Friday, August 11, 2017

Jane: How Can I Help?

At some point in our lives (and probably more than once), we will be told by a friend that they (or their partner, parent, child, or other loved one) have been diagnosed with a serious, maybe even life-limiting, condition.

How do we respond?

I’ve got some ideas:


When your friend tells you of this diagnosis, DO listen, and respond with empathy. It’s OK to say anything from, “That really sucks,” to “I’m so sorry” and, if you’re in person, offer a hug. Let them cry. Let them just be with what they are telling you.

After they have told you their story, DO ask, “How can I help?” Everyone is different, and will want different things from their friends, and that need will probably change over time. How is the best way to stay in touch — phone calls, email, texts, snail mail, in person visits? Then DO what they ask of you. Do they want meals brought in? Help with household tasks? Childcare? Pet sitting/dog walking? Lunch dates? Long walks? Just ask. They will know best what they need.

If they ask you to visit, DO visit!  Remember to keep it short and specific, and to keep it fun. Go for a walk, go out for coffee, lunch or a drink, sit in a park or other beautiful place, take in a concert, play, movie, or sports event. Your friend is still your friend. What did you like to do together in the past? Do it now! Just know that it may be different for your friend — they may tire easily, may need to go home sooner than planned, or have you leave if they’re not feeling well. Remember — this is about their needs, not yours.

DO ask their care partner how you can best support them. Even though they may not physically have the condition, they live with it every day, and it can be physically and emotionally draining. Just as with your friend (above), plan to do something fun with their care partner — or offer to stay with your friend while their care partner goes out and does something fun on their own or with another friend.

DO NOT offer advice about “cures,” special diets, herbal remedies, alternative health choices, or anything else you’ve read on the internet. Your friend and their care partner have already spent plenty of time on the internet, and maybe even have sought a second opinion or advice from a major medical center. They have done their research and made their choices. Just listen. And for heaven’s sake, DO NOT tell them what a gift this is for them. 

DO face your own mortality. If your friend’s diagnosis brings up your own fear of illness and death, deal with it. Seek out another friend (DO NOT discuss your personal concerns about this with your friend who has the illness or their care partner. They have enough to deal with.) or a clergy person or therapist. 

If your friend has dementia, DO be prepared for them to change. They will not always be your same old friend — in outward appearance. But, deep inside, they will still be your same old friend. They may no longer be comfortable leaving home — or may not be able to. They may not remember you. DO visit anyway. Your visit will bring them happiness. Sing or play music together. Look through photo albums or beautiful coffee table books. Read to them. Hold hands. Laugh. Offer to stay with them while their care partner runs errands, goes out for lunch, or takes a nap.

DO NOT assume your friend’s dementia (or other illness) will be the same as your grandparent/parent/cousin/friend/partner who has/had the same condition. As the saying goes, once you’ve seen one person with dementia, you’ve seen one person with dementia. Everyone’s path is different.


DO keep checking in with your friend and their care partner about what they need right now. And, above all, DO NOT disappear from their lives. You are important!

9 comments:

  1. Hi Jane and Sky. I'm sending love and hugs. Thank you for the blog you've created. You are so far away from Saranac Lake that I'm at a loss to be able to help. When I was taking care of my mother before she went into a "memory care" assisted living residence, a visiting psychiatric nurse recommended a book, "The 36-Hour Day". I didn't know anything about Mom's condition before I started reading that book. I bought copies for my siblings and have recommended it ever since to friends in like circumstances. Just now, telling you about a book and sending love is all I know to do. I'll also let our AUUC friends know about the blog site.

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    1. Thanks! Not as far away as you think....moved back to VT last year and live in Burlington. Thanks for letting AUUC know.

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  2. In addition to reading the terrific blog post above, I strongly recommend this article: http://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html#axzz2kF8iBw9U
    which emphasizes the level of closeness to the patient as a deciding factor in what to say and, more importantly, to whom.

    The one thing I disagree with Jane about (and I know whereof I speak, being halfway through chemotherapy for colon cancer) is that I would NOT recommend that people ask "How can I help?" That puts the burden right back on the patient or the caregiver to come up with something.

    Instead, I recommend just thinking of something helpful to do and do it, after checking with the patient and/or caregiver to be sure it's appreciated. Like to iron? Get to the bottom of their ironing basket! Bring food (after checking for not only food allergies, but appetite). Take the dog for a long walk. Bring over some videos and either watch them then with the patient, or leave them. Bring flowers. Clean out their refrigerator. At the very least, empty the wastebaskets when you leave.

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    1. Thanks, Judy. That's really interesting that you would prefer that people just pick something to do, and do it (with your permission). I would never want that! Glad to get your perspective. Maybe the better question is -- "What can I do for you -- or would you prefer for me to just pick something and do it?"

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  3. As I encounter partners, BFFs, etc., of those who face dementia, I feel I have a delicate challenge. What and how to share of my own experience losing my mother to Alzheimer's over a nine-year period. The part I usually choose is that there will be memories you will cherish long after your loved one is gone from every stage of the disease, almost to the end. I expected after grieving to remember fondly how they were before they were stricken. It was a bit of a surprise to have many good memories from their period of decline.

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    1. Wow. That's really interesting. Thanks for sharing!

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