Thanks, Pollyanna, for your comments about my last posting. You have a good point: what about those people who offer to help, then never do anything, never call again?
I have a few theories about that. Take your pick.
Theory number one is that "Let me know what I can do to help" is often just a sort of verbal space filler, like Have a nice day, or How are you. People who ascribe to this theory don't really want to help and certainly don't want you to let them know. Just thank them and write them off.
Theory number two says "Let me know what I can do" is a way of throwing the ball back into your court. These people really want to do something but don't now what. So tell them. So call. So ask.
Theory three has to do with fear. "Number three" people worry that if they do something it will be the wrong something. They worry that offering to help will make you feel worse: more incapacitated , less independent. They fear that they will cry, and that will make you feel worse and that will make them feel worse and etc. etc. Treat them kindly, and they'll return the favor.
Theory four has to do with fear of a different kind – personal cowardice. These folks are the "I just want to remember her the way she was" bullshit crowd. Run, don't walk, away .
In my own case, when I hear, "Let me know what I can do," if there is no proof to the contrary I tend to put my faith in theory number two. And I try to remember to be patient, to be honest, to be realistic. I know my friends are very busy. I know how easy it is for me, doing next to nothing , to let the days slip by without reaching out to people I care for. So I try to cut some slack, and then I try to remember to just pick up the phone.
Saturday, July 9, 2011
Thursday, July 7, 2011
Asking for Help, Lending a Hand
A few months back, in a chat with some fellow ALS-ers, a common but difficult topic came up: how to ask for help.
People with ALS need help -- it's the very nature of the disease. Some of us rely on home health care professionals, but most of us depend on a family member: a parent, a sibling, a spouse. We get used to their help, to asking for it, to accepting it. Outside help is, however, a totally different animal.
What do you do when someone says, "Let me know what I can do to help"? What do you do when you have a need that is beyond your caregiver's ability? What do you do when you ask a friend for assistance and the friend says no?
For a few lucky people, the answers to these questions come relatively easily. They may have a "Wish List" of needs, so that when someone asks, "What can I do?" they have an answer: Could you check my mail at the post office? Can you pick up some milk for me next time you go to the grocery ? I'd love to try that new Mexican restaurant: would you like to go with me?
They may plan for backup or alternate care for those times when their primary caregiver is overwhelmed or over-tasked. They may (they'd better!) know when to call 911.
For that third question – and this is often a doozy – they may be able to take it in stride and roll with the denial. They may be able to propose an alternative: "I guess museums aren't your thing. How about going to a movie instead – you pick." They may feel comfortable asking for clarification: "Is there something else you'd rather do, or am I asking too much of you?"
But those are the lucky ones, the rare ones, the hypothetical, idealized, maybe even imaginary ones. Not everyone has a network of friends neighbors and family ready and willing to help. Not everyone lives in a "village." Not here .
There is something in the American psyche, especially among people of a certain age, that makes asking for help tremendously difficult. Maybe it's pride. Maybe it's a reluctance to air dirty laundry in public. Maybe it's a disinclination to impose. Maybe it's part of the American frontier heritage, that rugged individualism that makes us say, "I take care of my own."
If any of these are true, they are especially true when it comes to personal issues, notably health. The fella who wouldn't think twice about asking his neighbor to jumpstart his car or hold a ladder or give advice on a plumbing project would sooner fly to the moon than ask that same neighbor to help lift his wife from the couch to her chair. It's easy to ask a friend to watch the cats for a couple weeks; it's hard, hard, hard to ask that friend to watch your husband for an hour.
And don't even get me started on family. Odd little kinship quirks can become flat out dysfunction when we try to ask family members for help. When they are supportive, we may fret that we're taking advantage. When they are disobliging, we get royally pissed.
Speaking of family, I remember when my father was fatally ill with brain cancer. He was still living at home, and Motherwas his primary caregiver (with occasional help -- finally -- from a home health aide). Dad's coordination was profoundly impaired, and he was prone to falling. When he did, Mother – my poor little mother, nearly crippled from rheumatoid arthritis – would pull and press and strain to pick him up by herself. This could take hours. This could leave them both crying.
Why in the world, I asked when I found out what was going on, didn't Mom called 911? Why didn't she call a neighbor, all of whom were close friends, to help?
She didn't want to call 911, she said , because the whole neighborhood would think there was some terrible emergency. She didn't want to call a neighbor she said, "because that's not what my friends are for." In her world, you suck it up, you do for your own, you keep your problems behind closed doors.
Isn't that sad ? Isn't that infuriating?
And isn't it sad and infuriating and bewildering – and, let's face it, oh so commonplace -- that many of us insist on following variations of that attitude, that behavior... day after day after day after day?
People with ALS need help -- it's the very nature of the disease. Some of us rely on home health care professionals, but most of us depend on a family member: a parent, a sibling, a spouse. We get used to their help, to asking for it, to accepting it. Outside help is, however, a totally different animal.
What do you do when someone says, "Let me know what I can do to help"? What do you do when you have a need that is beyond your caregiver's ability? What do you do when you ask a friend for assistance and the friend says no?
For a few lucky people, the answers to these questions come relatively easily. They may have a "Wish List" of needs, so that when someone asks, "What can I do?" they have an answer: Could you check my mail at the post office? Can you pick up some milk for me next time you go to the grocery ? I'd love to try that new Mexican restaurant: would you like to go with me?
They may plan for backup or alternate care for those times when their primary caregiver is overwhelmed or over-tasked. They may (they'd better!) know when to call 911.
For that third question – and this is often a doozy – they may be able to take it in stride and roll with the denial. They may be able to propose an alternative: "I guess museums aren't your thing. How about going to a movie instead – you pick." They may feel comfortable asking for clarification: "Is there something else you'd rather do, or am I asking too much of you?"
But those are the lucky ones, the rare ones, the hypothetical, idealized, maybe even imaginary ones. Not everyone has a network of friends neighbors and family ready and willing to help. Not everyone lives in a "village." Not here .
There is something in the American psyche, especially among people of a certain age, that makes asking for help tremendously difficult. Maybe it's pride. Maybe it's a reluctance to air dirty laundry in public. Maybe it's a disinclination to impose. Maybe it's part of the American frontier heritage, that rugged individualism that makes us say, "I take care of my own."
If any of these are true, they are especially true when it comes to personal issues, notably health. The fella who wouldn't think twice about asking his neighbor to jumpstart his car or hold a ladder or give advice on a plumbing project would sooner fly to the moon than ask that same neighbor to help lift his wife from the couch to her chair. It's easy to ask a friend to watch the cats for a couple weeks; it's hard, hard, hard to ask that friend to watch your husband for an hour.
And don't even get me started on family. Odd little kinship quirks can become flat out dysfunction when we try to ask family members for help. When they are supportive, we may fret that we're taking advantage. When they are disobliging, we get royally pissed.
Speaking of family, I remember when my father was fatally ill with brain cancer. He was still living at home, and Motherwas his primary caregiver (with occasional help -- finally -- from a home health aide). Dad's coordination was profoundly impaired, and he was prone to falling. When he did, Mother – my poor little mother, nearly crippled from rheumatoid arthritis – would pull and press and strain to pick him up by herself. This could take hours. This could leave them both crying.
Why in the world, I asked when I found out what was going on, didn't Mom called 911? Why didn't she call a neighbor, all of whom were close friends, to help?
She didn't want to call 911, she said , because the whole neighborhood would think there was some terrible emergency. She didn't want to call a neighbor she said, "because that's not what my friends are for." In her world, you suck it up, you do for your own, you keep your problems behind closed doors.
Isn't that sad ? Isn't that infuriating?
And isn't it sad and infuriating and bewildering – and, let's face it, oh so commonplace -- that many of us insist on following variations of that attitude, that behavior... day after day after day after day?
Wednesday, July 6, 2011
ALS in my Suitcase
Hitting the road for our recent vacation was fun. Hitting the road with ALS as a traveling companion was… well, let's just say challenging.
No, let's not. Let's say it was at times difficult, or depressing, or awkward, or embarrassing. Let's say it required extra work for my husband. Let's say it required extra work for me. Let's say it required a lot of adaptability, flexibility, and patience all around.
Among the, er, challenges: getting me out of a chair, out of the car, into the shower; dressing me in the morning and undressing me at night; feeding me; getting me to the bathroom in time to get my pants down before I flooded. (TMI? Too bad. ALS is, by definition, TMI.)
And more: combing my hair, folding clothes, pulling up the blankets, putting on a coat. Getting my pills out of their bottles. Opening the shampoo. Drying off after a shower.
Now, most of these things were challenges I regularly faced at home. They just seemed so much more daunting in a new, different environment.
But it was the new, different environment that made all the difficulties, all the challenges worthwhile. Because it was, indeed, a wonderful vacation. We went places we've never been, saw things we've never seen, met people who were helpful, kind, and thoroughly charming. We ate seafood till we exploded. We saw 16 bald eagles in one day. We saw a herd of Roosevelt elk grazing right beside the highway. We saw spectacular views from the top of Mount Constitution and from the headlands along the Oregon coast.
We laughed, finding humor in things that could have laid us low. Tipping over at the Oregon Dunes and unable, in the soft sand, to stand up again; sliding down the dune on my butt until a kind passer-by helped haul me up. Wearing a goodly portion of each meal. Dragging Scott into the ladies room ("Man on the floor!") to provide needed clothing assistance.
And we did enjoy many, many problem-free times. ALS was so often very low on our list of concerns, because I can still walk; I can still, in many cases, care for myself; I can still enjoy a lovely meal, a fun boat trip, a little hike, a beautiful view. I can enjoy finding new adventures with my closest friend: my husband.
The best thing about this trip, the best antidote to ALS, was that we were together. This was an early wedding anniversary gift to ourselves – who knows what my status will be by October. So we celebrated by exploring, helping each other, having fun, meeting our challenges -- together.
We celebrated 30 years of marriage and recalled our vows: We will take each other for better or worse, in sickness and in health, till death do us part.
And we will have a darned good time along the way.
Even with a suitcase-full of ALS.
No, let's not. Let's say it was at times difficult, or depressing, or awkward, or embarrassing. Let's say it required extra work for my husband. Let's say it required extra work for me. Let's say it required a lot of adaptability, flexibility, and patience all around.
Among the, er, challenges: getting me out of a chair, out of the car, into the shower; dressing me in the morning and undressing me at night; feeding me; getting me to the bathroom in time to get my pants down before I flooded. (TMI? Too bad. ALS is, by definition, TMI.)
And more: combing my hair, folding clothes, pulling up the blankets, putting on a coat. Getting my pills out of their bottles. Opening the shampoo. Drying off after a shower.
 |
| Aboard the Orcas Island ferry |
We laughed, finding humor in things that could have laid us low. Tipping over at the Oregon Dunes and unable, in the soft sand, to stand up again; sliding down the dune on my butt until a kind passer-by helped haul me up. Wearing a goodly portion of each meal. Dragging Scott into the ladies room ("Man on the floor!") to provide needed clothing assistance.
And we did enjoy many, many problem-free times. ALS was so often very low on our list of concerns, because I can still walk; I can still, in many cases, care for myself; I can still enjoy a lovely meal, a fun boat trip, a little hike, a beautiful view. I can enjoy finding new adventures with my closest friend: my husband.
The best thing about this trip, the best antidote to ALS, was that we were together. This was an early wedding anniversary gift to ourselves – who knows what my status will be by October. So we celebrated by exploring, helping each other, having fun, meeting our challenges -- together.
We celebrated 30 years of marriage and recalled our vows: We will take each other for better or worse, in sickness and in health, till death do us part.
And we will have a darned good time along the way.
Even with a suitcase-full of ALS.
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