The Fine Art of Giving and Receiving

There is a dance that often happens when people have a crisis, especially a health crisis, chronic disease and/or end of life issues. Family and friends want to help but don't know how. Patients/caregivers don't want to intrude on others and ask for help. So what happens?

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! 

 “Dancing is just a conversation between two people.  Talk to me.”

Hope Floats (1998) – Justin Matisse (Harry Connick Jr.) 


TTFN
Lorna

and again....

We had another trip to the ER today for a bleeding stoma.  Once again we were told there is nothing they can do to fix it. I know that sounds frustrating, but it is true.  With the amount he has been bleeding it is too dangerous to do any surgery because they would expect a massive bleed.  The good news is that the bleeding stopped on its own today. They did not need to stitch it at all.  The other good news is that is bloodwork was great today – the transfusion worked well. I am sure the bleeding today took care of some of it, but at least he had good levels today before the bleed. He will have it checked again on Monday, unless we have more problems before then.

We were able to return home, and told that when it bleeds again to put pressure on it for 1 hour, and if it is still bleeding to then go to the hospital.  He was taken off the tinzaperin – the blood thinner – and the surgeon says that will make a big difference. It is a hard thing to make that decision, but he is in more danger of problems from bleeding than with problems from clotting. Just the best of 2 bad choices.

We are now working on getting him caught up on pain meds. He missed some because he couldn’t take anything until we knew for sure he wouldn’t go to the OR.   So he has been sleeping quite a bit from the extra meds.  We also are watching for dehydration as he is sleeping and not eating or drinking very much.

We meet with the Palliative Care nurses, (and I think doctor) Friday morning to see where we go from here. I hope after that we have a better understanding of what this all means in the big picture.

"Courage does not always roar. Sometimes it is the quiet voice at the end of the day, saying,"I will try again tomorrow." - Mary Anne Radmacher

TTFN
Lorna

And on we go....

Another week full of excitement already!

We were back at Emerg on Tuesday afternoon with a bleeding stoma.  A doctor came to see him right away and we had excellent care. It was great to go during the day as there was a surgeon at the hospital so the ER doc called the surgeon to the ER to help get the bleeding controlled. He put in some more stitches (in the ER with local anesthetic) and things are fine for the time being. 

I spoke with our family doctor this morning to try and better understand what is going on.  The doc said it is portal hypertension, which means there is high blood pressure in the portal vein, which is causing the bleeding. There is so much pressure that the vein acts like an artery and that is why there is so much bleeding so fast. It is sounding like there is nothing they can do about it. They will just keep stitching and tying off the vein when it starts to bleed uncontrollably. The most likely cause is a tumour in the liver putting pressure on the vein. It is possible, although unlikely, that it is a blood clot causing pressure (according to my Dr. Google research).  

We spoke to the palliative care consultant who suggested to increase the stool softener and laxative to try and soften up the stool even more, and hopefully take some of that pressure off the vein. I have also sent past CT reports and doctor's notes to the palliative care doctor for her to review.  They are all to meet tomorrow and hopefully have some answers to how serious this is,  how it relates to the big picture, and what we should be prepared for now. They may order some tests to see if they can confirm the cause of the venous pressure. I hope to hear tomorrow and have some answers, although I am sure I will also end up with more questions!

Callum had another transfusion of 2 units today. It was basically uneventful. Thank goodness that appointment was already in place!

It is difficult to not have a fair bit of worry and fear right now.  We are in constant worry that the stoma will start bleeding again. We don't know if we should stop the "blood thinner" - it might help keep the bleeding a bit more controlled, but then there is the risk of blood clots causing trouble.  We are preparing for the possibility that we will hear some difficult information in the next few days.  We still are hoping for some tests and an easy to fix the problem, though!  We can't lose hope after all this time!

He is still sleeping quite a bit, even with the transfusions.  I hope it passes in the next few days, but I am suspecting we are starting to see things progress. It is so sad - he doesn't deserve this. We don't deserve this. But.....we are not the only ones in such a situation and we have had many wonderful times - with more yet to come.

As Callum would say "Play it where it lies"!

TTFN

Lorna

Pride and Humility

For a long time I have marvelled at how often we have two opposite feelings at the same time. The first time I remember dealing with this close up was when I worked at the women's shelter in Brandon. When working with the children in shelter I used a book called "Double-dip Feelngs".  It talked about different times children have to go through opposite feelings at the same time: happy to move to a new house and get your own room, but sad to leave all their friends; excited to start school but afraid of leaving mom; etc.

Going through a cancer journey leads to dealing with contradictions like this all the time.  From the toxic effects of chemotherapy in order to treat the disease, but wishing for healthy days, to wanting test results quickly - but knowing that it is usually bad news if you hear too quickly.

I have recently experienced something similar, although the opposite feelings come from different experiences.

Pride: a feeling of pleasure and satisfaction thatyou get when you, or someone connected with you, haveachieved something special (MacMillan Dictionary).
 I have felt an extreme amount of pride in our children in the last month. They are very different children with very different personalities, and therefore, different accomplishments. However, we are equally proud of them.

Vanessa is now a full fledged Chartered Accountant. She has been relentlessly dedicated in the pursuit of this goal, and she achieved it in May.  She also was the successful candidate to join the finance department at the City of Medicine Hat.  Her goal has been to find employment which gave her a balance of family life, work life, and financial stability. And I believe she has found it. We are so proud of her hard work and dedication to family.

Jamie's first love has always been golf. He has been a top notch amateur golfer and last fall set a goal to win the Victoria Day Tournament in Medicine Hat. He practiced and practiced and it paid off with a win! Up to this time Jamie had won 2 of the 3 major golf tournaments in Medicine Hat, and he wanted to win this one for his Dad. It was thrilling for us to watch him birdie the playoff hole for the win. We are so proud of his hard work and dedication to his goal, and his family.

Humility - a way of behaving that shows that shows you do not think you are better or more important than other people.

I am not sure I truly like that definition of humility, but I think you will get what I am trying to say.  We have been through this cancer journey for nearly 6 years. We have had many ups and downs, good days, bad days, unexpected trials and successes.  We have had help from many people over this time, but last week was the first time that I just couldn't do everything that needed to be done. Even as I write this, I have a dishwasher full of clean dishes, a sink full of dirty ones, counters that need wiped, etc. I will get to it later today.  This has happened before, but not really much since I have not been working and doing these things at the same time.  I have been humbled, and will actively seek out more help. I didn't understand the advice of making things as easy as possible so you have the energy for the good times and fun stuff.  I now have a better idea what that means. We are so lucky to have so many people here to help us. I am getting less hesitant about taking people up on their offers!

If anyone reading this is in a similar situation, I have found an on line resource to help coordinate the help from people. It looks quite neat and I have started using it. Check out https://www.lotsahelpinghands.com/create/  and see what you think!

If you would like to help us out, please copy and paste this link in your browser:
https://www.lotsahelpinghands.com/c/643145/ 


You will need to sign up and register in order to help, but there is no cost and no risk.
"Giving is the secret of a healthy life. Not necessarily money, but whatever a person has of encouragement, sympathy and understanding." John D. Rockefeller

TTFN

The Continuing Capers of Callum

Oh my, its been a long, long time since I've written! We have been back and forth from Saskatoon and enjoying Medicine Hat.  We have enjoyed birthday parties, sunshine, the Porsche and ice cream.  Ooooohhh....the ice cream was good!

After a few weeks of a somewhat regular life, we were thrust back into the medical system this past weekend. Callum's ostomy stoma started bleeding Saturday night so we headed to the ER. They managed to stop the bleeding and used some surgiseal to try and seal the source of the bleeding. Surgiseal is the stuff they use during surgery to stop "bleeders" and it is made of material that dissolves and is absorbed into the body.  It seemed to work and he had a pretty good day Sunday.

As were getting ready for bed Sunday night he started bleeding again.  In less than 5 minutes there was over 1-2  cups of blood but Callum did get some pressure on it to hold off the bleeding. I called the ambulance as the blood loss was significant in such a short time. He lost nearly 3 cups Sat. night and this bleed was also heavy.  We were at the hospital until 4 am. The problem was a floppy blood vessel, an artery, that kept bleeding. The doctor tried to cauterize the blood vessel but couldn't stop the bleeding long enough to do it. So, he stitched, and he stitched, and they soaked up blood, and he stitched, and they soaked up blood, and he stitched....well, you get the idea! If this didn't work and he started bleeding again he would be heading into the OR to fix it once and for all.

With the amount of blood loss he experienced he did have his hemoglobin checked Monday. He was down to 73 (normal is 135 - 180).  Transfusions are generally recommended when the hemoglobin is below 80, so he was scheduled for 2 units of blood on Tuesday and 2 more units on Wednesday. The transfusions were quite uneventful - just 6 hours a day at the hospital.

His blood was checked today and the hemoglobin was up to 108, which it quite acceptable. The doc says we will go by the symptoms, and if he is tired over the weekend then he might have another transfusion next week.  His platelets were quite low (53, normal is 150 - 400) which is likely from having such a large amount of blood in the transfusions. He will have his blood tested Monday or Tuesday next week. We are sure he will be back to normal by then!

It has been quite a week with being at the hospital 6 days in a row, 2 of them late at night. We are both quite tired from those late nights and early mornings - the transfusions started at 8 am. It was a scary sight to see the blood loss. While we have had a good outcome, it is a serious thing to go through. We haven't heard what might have caused a floppy blood vessel - I think it just happens. The doctor likened it to a hemmorhoid.  It appears to have little connection to the cancer, although I think the blood vessels do weaken both from chemotherapy and from the cancer itself. So perhaps there is some relationship, who knows. And it doesn't matter. We just need to make sure it doesn't happen again.

We will spend the next couple of days resting up from the busyness of the last week. It's been quite a while since we have had that much excitement! In the past I seem to remember having a lot more fun when Callum and I were out all night!

I see many of you have been checking the blog, and I do apologize for not writing sooner. My energy levels and concentration ebb and flow these days, and sometimes I just don't get to writing.

Thank you for your concern and dedication to checking the blog - much appreciated!!!

"Just for today, no matter where I am going, or what I am doing, or who I am doing it with, it is my intention to focus on the positive." Lucy MacDonald


TTFN
Lorna