We end up with Givers and Receivers. It is a dance of needs, wants and offers. A dance that often sees Givers waltzing while Receivers tango. It is so hard to get the rhythm in sync! We are often left with families struggling to keep a handle on the ever changing needs of dealing with new and ongoing care issues. The Givers often say "Just call me anytime." "Let me know what you need" "I'm here for you". "You know you just have to ask." The Receivers spend most of the day making decisions on medication, organizing appointments, scheduling visitors, looking for cues from the patient to say whether to call an ambulance, the doctor, nurse, or just wait until tomorrow and see how it goes. Receiver/caregivers need to figure out what their loved one can eat that day, are they well enough to go out, or have a conversation. Receivers can often have trouble keeping track of the days of the week or the time of day. There is seldom time or energy to figure out what they need, who might be able to help, find a phone number, and then remember to call.
It's not that most Givers are insincere. Sure, there are some people who make offers of help but really don't mean it. But I believe most Givers really do want to help. What they are looking for is direction from the Receiver. And most times the Receiver just manages to get through the day. There is nothing left over to figure out what their current need is, let alone anticipate a future need. And the out of sync dance continues.
I have been trying to find a way to get this dance in sync. Recently I very quickly found I needed help. It was time to become a Receiver on a more full time basis. One thing I did was start an online community on Lotsa Helping Hands website. It helps to organize needs on a daily, weekly or monthly basis. There is space to organize emergency contacts, health information, and it is easy to send information in one broadcast email. With this set up, people can SEE what help is needed and sign up for it.
Something else that helps is if a Giver makes a specific offer ie. "I can do your gardening, does Wednesday work for you?". A Receiver will seldom ask for something. Maybe they will ask some family and very close friends. But it is unusual. If you love cleaning, offer to come and clean. It is very important to not be too general. Even the question "What can I do to help" can be too overwhelming - another "demand" the person/caregiver has to deal with.
It can be equally difficult for Givers to know how to help. Recently the LIVESTRONG Facebook page asked people what helped them when they or a family member was going through treatment. I have made a list that includes many of these ideas, plus some of my own. I will continue to look for suggestions and post them when I can. I recently read on another blog that what the caregiver needed was a maid who can cook - that pretty much sums it up!!
Please keep in mind who your Receiver is. These suggestions won't be for everyone. Personalities are different, treatment affects everyone different, some people have more financial resources than others, some have more family and friends to help than others do.
So....here it is! A list of suggested ways to help, some specific suggestions for people who live out of town, and some suggested visiting etiquette. I hope it helps both Givers and Receivers. Feel free to send me other suggestions to add to the list.
GIVERS
Things to do/send to friends who are ill and their caregivers:
Ø Wear the LIVESTRONG yellow bracelet for them.
Ø Talk to them normally, in a positive way.
Ø Stay strong for those you love. Life is short...tell them how you feel and what they mean to you. You may not have another opportunity. Real friends are forever.
Ø Prepare meals for the family because they'll lack the time to do it themselves
Ø Lawn care
Ø Support the caregivers nearby so they don't run themselves down and abandon their own lives.
Ø Monthly themed care package. Something for the whole family to enjoy, if possible.
Ø A good book
Ø A special blanket
Ø Homemade cookies
Ø Funny cards to make them smile.
Ø Crafts
Ø Remember pets each month
Ø Movie night box, including a DVD, popcorn and candy.
Ø Funny videos
Ø Hire a housekeeper for them
Ø Arrange meal deliveries
Ø Send or take reading material. Tailor this to the person, sometimes there is too much fatigue and “chemo brain” for long novels.
Ø Send or take crossword puzzle books
Ø Send a special card
Ø Send a special poem, verse or short stories
Ø Gift Cards: i.e. Gas cards, restaurant gift cards, online shopping, massage, music (iTunes), Starbucks, Tim Hortons, food/grocery delivery
Ø Set up a 3ring binder w takeout menus
Ø Send a card each week, with some kind of inspiring quote or a funny saying
Ø Care packages,
Ø Money,
Ø Paying for a nice camera or a set of family portraits,
Ø Visit, - bring coffee/drinks/snack
Ø Provide gardening services,
Ø Joke gifts or other funny items that will lighten the mood,
Ø Be a non-judgmental ear for them so they can talk or vent without having one more person tell them what they HAVE to do or that all their personal/health care decisions have been wrong
Ø Text a joke a day
Ø Ask what food they can keep down and provides comfort and send a goodie basket of that food, some other tokens of comfort like a stuffed animal, a t-shirt, and a photo.
Ø CD's of guided imagery,
Ø Cozy cotton pajamas,
Ø Funny cards,
Ø Stamps/small easy craft projects...
Ø A lot of local grocery stores have delivery directly to your kitchen table, usually a 5.00 fee, the services usually can be ordered online and paid for with a credit or debit card :)
Ø Unexpected care packages are great!
Ø Send flowers,
Additional Things To Do or Send If You Are Not Near:
Ø Send a joke by email,
Ø Send pictures by email, snail mail, or on Facebook
Ø Use Skype to visit.
Ø Use FB and all the other technology out there to share pictures and funny video of kids, family or pets to entertain and lighten the mood.
Ø Be a "virtual" shoulder to cry on by email, SKYPE, phone, text.
Ø Send a note by snail mail. . Seeing your words of hope on paper will give them something to look at when they are feeling down If you send it in a funny card or a card with messages if strength even better.
Ø Send reading material,
Ø Send them a magazine subscription
VISITING ETIQUETTE
Ø Keep visits short. Leave before the person is tired.
Ø Ask how they are feeling and let them lead the conversation if they want to talk about their health and issues related to that.
Ø Bring your own refreshments, and maybe a treat to be shared.
Ø Be respectful of other visitors. When someone arrives when you are visiting, it might be a cue to finish your visit.
Ø Remember that just because someone LOOKS and ACTS like they are fine, they are still sick INSIDE. Don’t be fooled that they are BETTER!
Ø If you are staying for a few hours, when someone else comes, it is good time to go for a walk, go shopping, go have a nap etc. It is overwhelming for the person who is ill to have too many people around.
Ø Give time for family (and family give time to other family) to have individual time to visit. This is especially important in end of life care. The person who is dying usually needs time to visit individually with family members.
Ø If there are many out of town family/friends who want to visit with each other, arrange that visit somewhere besides the sick person’s place. Too many conversations can be overwhelming.
Ø Remember the caregiver has many of the same needs as the person who is sick.
Ø Keep in mind that there are numerous other demands on the sick person and caregiver: doctor visits, home care, nursing visits, blood tests, treatments, medication schedules, insurance forms, updating friends and family, etc. While it might seem that they are “at home all day”, it can be full of activities that are quite tiring.
Ø If the family has set up a way to schedule visits, use that system as much as possible.
RECEIVERS
Ø Set up an email group to keep friends and family up to date with things
Ø Start a blog to share your thoughts, feelings, and share information.
Ø Make a “Wish List” of things that might help – Amazon has a place to do this where people can check and send/do something they know can help. Keep it up to date.
Ø Another method of communication between you and those interested in how are you doing is using a website like Caring Bridge, an excellent, compassionate network site. Here's your link: http://www.caringbridge.org/.
Ø The website www.lotsahelpinghands.com is a great website for scheduling and organizing help like meal drop off, visits, transportation, household needs etc.
Ø Be thankful for all that is done for you!
TTFN
Lorna
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