The role of Carer

BlackWidow

Hello everyone
I often read posts or comments from members who are also carers.  I refer you to the post by @arpie titled Are you Caring for a Partner & Parents with Dementia/Alzheimers.
Many members care for a sibling or a child who has a condition meaning they are unable to function independently.  Whilst it is common to hear of dementia or old age being the culprit it can be a number of varying conditions.
Perhaps BCNA could have a private group where members can connect and share with other carers as often they have similar worries or needs.
Does anyone else think this would be helpful to those very special people who spend their life as carers ?
Anne

FLClover

Yes, I do. I think it’s a great idea to have a private group like that. I actually think that something even more proactive should be done, such as fundraising, where the money would go directly to help these people who really need it but can’t get it from the government 👌🏻

June1952

Great idea @BlackWidow
Many people, male and female, are the carers for a wide range of needs.  My carer role is due to hubby's early onset dementia, a friend has a disabled daughter, another friend cares for a disabled foster child - everyone needs a support network who can offer advice, a caring shoulder or information as to what may be available.
Not all have family and not all have friends who can understand, step in and help.  One's friend network often fades away due to the fear of the disability.  A very sad society at times.
Thank you sincerely for your post.
Hoping others will respond.

arpie

@BlackWidow ... thanks for raising this issue again .... Apart from looking after parents and kids with problems, being totally honest here, those with Mets BC will also have carers looking after them at some stage too, so my suggestion of a private group in my thread on Carers has real merit for all our members.  

Like me and @June1952, we ended up as carers too - and that will also happen to other members, even if not ‘paid for’ or recognised by Centrelink.

We could raise emotional issues that would best be discussed in private ... from legal issues (guardianship etc) to personal issues and how to cope with them without going mad.  

@Giovanna_BCNA - could this please be raised with the team, and discussed as a new group?

BlackWidow

Agree @arpie, there must be carers on this site who would appreciate the emotional and educational support available through other carers who know exactly what they are going through on a day to day basis.  In early days as they struggle to find ways to do things having the backup of 'experienced' members would be invaluable.
Any thoughts @Giovanna_BCNA ?  The carers of members in the Metastatic Group would surely appreciate this group, too.

Giovanna_BCNA

Hello @arpie and @BlackWidow thank you for your post.  It is certainly something that I have thought about and as you say it would allow a private space for carer specific discussion.  I will look into this for you all and be in touch as I think its a great idea.  Kind regards Giovanna

arpie

Many Thanks Giovanna ... that would be wonderful ... there are so many steps in being a carer ... I am learning new stuff everyday!

Tips for stupid things, like make sure you keep a copy of your IPTAAS/isolated patients docs before you post them .... the mongrels lost all mine and Keith’s - so am now having to get them all signed off again! Grrr

Jwrenn

@arpie that’s a good tip for anything which might be important. I have indefinite referrals to my surgeon and oncologist that I copied so next time I am told I need a referral I hopefully won’t forget that I have already have them. 

June1952

Thank you @Giovanna_BCNA, a private group would be good as we don't always want the tiny details of our lives, and that of our care recipient, out there for all to see.

Thank you @BlackWidow for raising this issue again.  Caring can come to any of us at any time and for a variety of reasons, so a private group in which to discuss things would be great.

Whilst doctors etc try to give advice there is nothing better than the support of someone experienced.  The little things such as trying different products is good as not all areas have outlets for everything can make a huge difference to the carer.

Good advice, @arpie. I went for my pre-surgery nipple dye injection 😖 on the day of my surgery to find the reports had not arrived but I was fortunate to be able to hand the radiologist my huge folder with all the scans !