topic Re: Tips for caring success in Coping with a loved one's cancer

Tips for caring success

Anonymous — Mon, 25 May 2020 10:24:50 GMT

Caring is not for the faint hearted, I have noticed that we often join a forum having ridden the emotional roller coaster for too long. We feel exhausted, resentful, guilty, burnt out and more.

It is early days in relation to my husband's diagnosis and I am keen to care for him as healthily as I am able to and am keen to get tips from others as to strategies they have used that have been helpful and I would appreciate if anyone is willing to share some.

I note the Cancer Council has a booklet (link here ) in relation to caring for a spouse with cancer and looking at things from a patient perspective can help us be more understanding.

Together we can be stronger 💪.

Darcy

Re: Tips for caring success

Anonymous — Mon, 25 May 2020 10:30:06 GMT

Link here hope this one works, otherwise here is address

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.cancer.org.au/content/about_cancer/ebooks/Caring%2520for%2520someone%2520with%2520Cancer%2520booklet.pdf&ved=2ahUKEwjHiPan5s7pAhV37HMBHZ9rAGwQFjAKegQIAxAB&usg=AOvVaw3kkVut6QMPofRYJofUXhYW

Re: Tips for caring success

Anonymous — Thu, 28 May 2020 04:34:41 GMT

Each of these 8 dimensions of wellness can be impacted as we care for our loved ones.

I have found paying attention to each of these areas in life can be helpful. Not necessarily at the same time though, being gentle with ourselves, the aim being to improve our life and not to be further discouraged.

Re: Tips for caring success

Anonymous — Mon, 01 Jun 2020 12:29:12 GMT

Recognising and naming the uncomfortable emotions that I am experiencing has helped me be able to deal with them. One of those had been fear and I quote from the Cancer Council booklet on "Caring for someone with cancer"

Caring for someone with cancer can be frightening. You may feel
afraid of:
• how unwell the person you’re caring for is feeling
• not knowing enough about the treatment and health professionals
• being responsible for giving medications
• feeling like everything is out of your control
• not knowing what the future holds
• the possibility that the person you’re caring for could die.

Many carers say that learning more about the cancer helps
them feel more in control, while others feel overwhelmed by the
information available. You need to do what feels best for you.

Talking about these feelings with a counselor helps me to manage them. After the initial crisis period of my husband's diagnosis and early intervention by way of surgery I found myself falling into a bit of a heap. Have managed to start moving again and get on with day-to-day living and getting support with some of the harder stuff in relation to being able to practically manage the fears I have.

Re: Tips for caring success

VM — Thu, 04 Jun 2020 00:58:10 GMT

Hi Darcy,

I have been selfish in being unaware of your own challenges and I apologize.

When I was in community care, coordinating professional carers, something I felt strongly about was allowing the cancer experiencer to have as much autonomy as was safe to do so. Of course this does work differently with various personalities and temperaments. My message was to follow the person's lead. ...hat almost nothing was out of bounds so long as everyone was safe. And in the meantime gently and quietly pick up the reigns as they fall. Keeping a sense of humour helped as well, and also being there when you say you will be....keeping them up to date if you are heating a wheatie up which is taking damnably too long for them..that sort of thing.

One strong piece of information and advice I will give anyone to really, really keep to is to not hide behind busyness to avoid seeing them in the processes of their illness and ultimately their death. I would say absorb e-v-e-r-y single moment, every sound, touch...everything. Thank your grief for being there to look after you but ask it to sit beside you while you do this. You will have the rest of your life to grieve......you will only have the rest of theirs to be there with them.

Vxx

Re: Tips for caring success

Anonymous — Thu, 04 Jun 2020 04:49:09 GMT

@VM

No need to apologise, when ones heart is breaking, for a time there is little space for anything else.

We are in the very early stages and I wanted to ensure that I do what I can to avoid carer burnout, your hints are much appreciated.

Keeping a sense of humour is one of my specialties but don't think my husband was amused when I suggested we get out our party mullet wig should it be needed 😁. He visibly relaxed when the oncologist said the chemo regimen he would be on is unlikely to cause significant hair loss.

Re: Tips for caring success

VM — Thu, 04 Jun 2020 06:54:05 GMT

Oh bless him...funny how the first thing we think of is losing our hair.

Knowing now first hand what it is like as a carer, and having sprouted all the text book hints about what to do for a carer I CAN suggest a couple of things.

When someone offers to help...hold them to it. You may feel too overwhelmed to think of something straight away, however, you will get to a point where you feel that you want to ask. So whilst you can think of the tasks which can be delegated so as to give you time for quality time with your hubs AND importantly with yourself. Kick that guilt thing out the door when it comes to 'self care'. And look, it doesn't have to be something exotic like yoga and running 500 kms....or even Day Spa stuff. It can diarising time each day where you read, look out the window, journal, colour in, sit in the sun or moonlight, call someone who makes you feel good. In this way, not only are you experiencing self love, you also 'look forward to it'. This helps the psyche very much. So if it means getting next doors 13 year old to water your garden for a few dollars while you enjoy yourself...do it. I have had to bite the bullet and have a dog walker come three times a week. Being tight fisted I have wrestled with the cost, but it frees up time to have quality time with whoever I choose...the puppoes included.

Re: Tips for caring success

little_stitcher — Thu, 04 Jun 2020 08:27:26 GMT

Hi Darcy, one of the things I started doing when my husband began his treatment is taking multi-vitamins and trying to get as much sleep as possible. Obviously sleep can be difficult, but my idea was to shore up my immunity as much as possible so I wouldn't get sick and would stay in as good condition as possible. Your physical, emotional and mental well being is very important so you can last the distance. Peer support is also invaluable, and there is also a facebook page I belong to called "Caring for husbands with cancer", I recommend it. It's very supportive and active, and full of people who have been through what you're going through. Sending huge hugs, Emily

Re: Tips for caring success

Anonymous — Thu, 04 Jun 2020 11:44:26 GMT

Thanks @VM @little_stitcher

Looking after ourselves = necessary.

It can be a long haul.

Keeping healthy is certainly challenging for me and I have been comfort eating (over eating). I have been stricter with getting to bed at a decent hour but also getting up when the alarm goes off and not waiting for hubby to get up first (something he always used to do).

I agree peer support is so very helpful and I have joined a pancreatic cancer support group on Facebook.

Re: Tips for caring success

Anonymous — Thu, 04 Jun 2020 22:41:42 GMT

Outsourcing tasks is a terrific idea. Whether this means paying someone to help out with things like housework /lawn mowing or speaking up when asked and accepting the help offered.

When my husband had a previous serious condition I was so grateful for the house cleaner I had come in once a fortnight.

Re: Tips for caring success

VM — Fri, 05 Jun 2020 01:26:17 GMT

Well the puppo walker came for the first time and I can't express how happy I was and how happy my dogs were. They love her. Little things like feeling happy for 2 minutes is like taking an energy and happy pill

Re: Tips for caring success

Anonymous — Thu, 11 Jun 2020 11:50:01 GMT

Having an attitude of gratitude is helpful too. When we focus on the positives rather than the negatives we tend to notice what we can do to make life better for both ourselves and our loved ones.

Today I am grateful for our two dogs who give us much joy.

Re: Tips for caring success

CalmCloud — Mon, 15 Jun 2020 07:19:33 GMT

I agree that it is a matter of balance - should obtain an amount of information that you feel that can reduce your pressure yet not become too overwhelmed.

I work for a biotech company but when it comes to deal with my dad's illness I feel like there is so much yet so little that I can help. What I meant is, even if I do have connections, the chances are like gambling to see if we can happen to have the "just about right medication" for him, and also to deal with all the depressed feelings within my family, a feeling of guilt can hardly go away. He's under 60s years old and I am still very young that I haven't got a boyfriend yet, I mean, he could've enjoy a family joy instead of dealing all these sadness.

I guess a way to deal with is to let the emotion flows, just accept it instead of thinking why life is been so unfair to me, and be grateful, to see that everyday as god's gift. Read some books, and it can heal.

Re: Tips for caring success

Anonymous — Mon, 15 Jun 2020 09:01:23 GMT

@CalmCloud

I really like this talk on grief, early on it talks about life being "not what we ordered".

https://youtu.be/TxSd8f2Utpk

I do not know what stage your father is at but it is early days for my husband and I am taking things as they come, not thinking too far ahead and let the treatment process happen. His oncologist says there is no way of knowing who will have a positive response to chemo and who will not.

Sitting with my feelings, acceptance, gratitude (as well as giving guilt a swift kick out the door) was a process for me which began following a previous nearly terminal condition my husband had. Am coping heaps better this time.

Re: Tips for caring success

MargieSM — Sun, 09 Aug 2020 04:58:55 GMT

thank you, I've now joined C4HWC
virtual hug to you

Re: Tips for caring success

Anonymous — Sun, 09 Aug 2020 06:31:01 GMT

@MargieSM

It was @little_stitcher who suggested that you join the C4HWC group, not me. I suggested you join the Whipple Warrior Caregiver Support Group as the carers there can offer specific advice in relation to Whipple/ pancreatic cancer.

I did join the C4HWC group but got removed as I posted the following (which I think they may have thought to be Covid related), perhaps I should have specified that I felt that having a pancreatic cancer diagnosis is a difficult time and I thought it to be useful for the feelings we as carers have.

The Room of Ancient Keys
by Elena Mikhalkova

Grandma once gave me a tip:

During difficult times,
you move forward in small steps.
Do what you have to do, but little by little.
Don’t think about the future,
not even what might happen tomorrow.
Wash the dishes.
Take off the dust.
Write a letter.
Make some soup.
Do you see?
You are moving forward step by step.
Take a step and stop.
Get some rest.
Compliment yourself.
Take another step.
Then another one.
You won’t notice, but your steps will grow
bigger and bigger.
And time will come
when you can think about the future
without crying.
Good morning.

Re: Tips for caring success

little_stitcher — Sun, 09 Aug 2020 06:48:28 GMT

Hi Darcy, I'm sorry you got removed from C4HWC. Ellen Sue, the administrator, is usually so understanding and supportive but she's got a real bee in her bonnet about Covid for some reason, and won't allow even the faintest allusion to it. I find it quite frustrating, because obviously it has made caring for our husbands so much harder and I'm sure we would all like to vent about it. I think it's because it's an American based group and she tries to keep it totally apolitical, but in America Covid is also a political issue. I hope you can find some great support soon. x

Re: Tips for caring success

Anonymous — Sun, 09 Aug 2020 08:23:04 GMT

It's ok @little_stitcher I can see how things can go off topic easily, so no hard feelings, I have found the dedicated Whipple pancreatic cancer group to be really helpful as is targeted for our situation.

How are you managing?

Re: Tips for caring success

little_stitcher — Sun, 09 Aug 2020 10:03:25 GMT

Pretty good. My husband is now in the process of returning to work (he works in the IT department of a utilities company, so has been working from home since last year anyway) and is building up his fitness slowly. And I recently got a job after 12months of unemployment (Medical Secretary in a Cardiology Practice), so we're both adapting to working again. Lockdown is pretty hard, but it's not too different from what we've been doing during his treatment anyway.

Re: Tips for caring success

Anonymous — Sun, 09 Aug 2020 10:27:24 GMT

Lovely to hear you have got a job now @little_stitcher hope hubby continues to do well.