Strategies for understanding and coping

[ChrisD]

Hello,

I have only very recently discovered this forum, I wish that it had been brought to my attention or that I had done more 'Googling' when my Mum was first diagnosed - the sense of community here is very uplifting for circumstances that are so dire.

Mum is elderly and as such there are no viable treatment options; the palliative care route has been adopted and it has been 16 weeks since her diagnosis.

Having spent some time looking at posts by other people, I see that there are many things that I can very closely relate to and I have found this a great help in trying to get my head wrapped around the beast that is pancreatic cancer.

For the moment, I am mindful that time on this earth for my Mum is in short supply (however I do not think that she realises just how short) and I am struggling to be upbeat when I see her - when she is in pain and also losing so much weight the conversations are difficult, finding the 'right words' and putting on a brave face is something that I am wrestling with.

I have two contrasting and conflicting emotions - one wishing for Mum to be with us longer and the other that she should not have to endure a miserable demise.

For most of us the emotions are all new territory, however since we are all individual we each find our own strategy to cope with 'the next day' - I have not found the way yet .....

Thanks to all who have taken the time to contribute on this forum, you have made my journey a little easier.

.... Chris

[cestrian]

Dear Chris

As a patient myself I have often said on here that it is so much more difficult for carers like yourself. Keeping a brave face while watching a loved one suffer is so hard to bear but really all you can do apart from showing your love and support for them and trying to make sure they are as comfortable as possible. The balance between fighting the disease and trying to maintain quality of life is sometimes difficult to strike and can only be achieved by all parties working together for the patient's benefit.

You have the support of all on the forum during this difficult time and of course the superb Jenni and Dianne are always available for more professional assistance and advice.

Love and Peace

Mike x

[nikkis]

Hi Chris,

Welcome to the forum and I am glad to hear that you have found it helpful. You have summed up so well how it feels to go through this as a relative, it can be unbearable at times.

Take care of yourself too,

Nikki

[Cathy]

Hi Chris

There is no easy answer. Caring for someone you love and seeing someone you love in pain or deteriorating in front of your eyes is a tough gig. None of us choose to be in that position. I think you just do the very best you can but recognise that you aren't super human and can't be 100% perfect all of the time..

Be kind to yourself and look around for help and support from others (whether this site, Macmillans, through your GP or friends and family).

Know that you aren't alone.... Many of us have tread this path before you or are treading it with you.

Cathy xx

[Bee]

Hi Chris,

So sorry you are in this position. None of us can change it for you but you are not alone and you will find the strength to get through. All I can offer is to make the most of every day and take each day as it comes.

Take care of yourself too along the way.

Bee xx

[ChrisD]

Thank you for your kind thoughts and wise words that were made so promptly.

Mike you are very noble and your comments are humbling (I have indeed contacted Jenni who was exceedingly helpful, I wish that the practitioners in the NHS 'system' had her body of knowledge - she highlighted 'gaps' in the care that Mum should be receiving).

I need to accept the inadequacies of the help that I can provide for Mum and just do the best that I can.

My thanks again for your support.

.... Chris

[ChrisD]

A brief update since my last post .....

Mum is at home and her frequent sickness and wretching over a prolonged period became intolerable where the health professionals were unable to provide the relief that was needed.

A 'phone conversation with Jeni provided me with the knowledge to speak with an appropriate level of expertise to the the local surgery where, finally, a good response was made by them. Mum now on a syringe driver to provide the medication to take the sickness away and also to simultaneously deliver the pain control too. The end result is that Mum is now 'comfortable' which is vital to her and, selfishly, I do not have to care for her helplessly as she suffers.

Three important lessons:

1) The support line here provide absolutely top drawer advice

2) The knowledge that you have about pancreatic cancer may be better than the health professionals treating you or your loved one, do not be shy with passing on your knowledge to them so that they can provide the best options for you. The assumption that your health professionals must know best does not always hold true....

3) An adjunct to the previous point, you may need to be 'pushy' or persistent and not settle for what the health professionals initially tell you where you have good reason to question their advice.

Whilst writing this note, I should also like to say that the nurses here are superb at 'listening' and are a tower of strength with broad shoulders on which to cry whilst having a virtual hug - I am truly grateful for their wonderful support and wisdom.

[J_T]

Hi Chris so pleased to hear your mum is now comfortable. My husband felt much better once he got a syringe driver as the meds went straight into his bloodstream and no longer irritated his gut.

A lot of us here have also learned the lessons you have re health professionals but it's good to keep reminding new visitors to the forum to be proactive, and also that help is here in the shape of Dianne and Jeni professionally speaking and from the 'forum family' in terms of a listening ear and moral support.

Best wishes

Julia x

[Guest]

Hi Chris,

I am fairly new to these also. My dad has recently been diagnosed, and I feel so helpless. When I am with him, I just want to do as much as I can, and be positive for him as much as I can.

When I'm not with him, I am angry, I scream and I cry. I try to get the emotions out before we speak or see each other, and then I try to be the brave little girl he taught me to be.

Do you have a partner that can hold your hand and help you?

[EmmaR]

Hi Chris ,

All I can say is come on here and you will find comfort that Is hard to find anywhere else because we really do understand !!

The nurses what can one say but brilliant sorted so many of our problems out with their expertise and knowledge plus kindness .

Take care

EmmaR x

[ChrisD]

Thanks once again for the prompt responses with kind and supportive words - this forum is very much a loving and caring extended family.

Leila, I can totally relate to how you are feeling. I think that it is important to have the release valve to let your emotions out, then to be brave (and as positive as possible) when you are with your Dad. My thoughts are with you .....

[ChrisD]

A further update - I am not looking for 'tea and sympathy' but wish to pass on a couple of comments which may (or may not) help other folk.

Mum last had some food, albeit a tiny amount, on Feb' 15th and became bed-bound on Feb'18th when she had the syringe driver.

Since the 18th Feb' Mum's health has been on a further roller coaster and there have been a number of occasions where the health professionals have led us to believe that Mum's journey was drawing to a close - however, despite being very frail and weak she constantly surprises us by rallying around. I am not sure how common this experience is, however, saying your 'last goodbyes' more than once is a ghastly emotional roller coaster. So, my message is - keep strong, the final steps in the journey may take considerably longer than anticipated where folk can survive on fluids only (for Mum, three weeks so far).

I should add that we have been exceedingly lucky to have received wonderful support from a local charity that have done many 'night sits' and also a local agency that have wonderful ladies to help spruce up Mum each morning with personal care - these organisations have enabled Mum to have dignity and comfort in her own home as the sunsets on her life.

[nikkis]

Hi Chris,

You must be emotionally and physically completely drained, so glad to hear you are getting good support though. Thinking of you and your family,

Nikki

[ChrisD]

Hello Nikki,

Thanks for the kind and swift response.

You have hit the nail on the head - from a (full time) carer's perspective, it is emotionally and physically draining. However, I can only assume that it must be so very much harder for Mum who is confined to her bed.

[Cathy]

Hi Chris,

I'm sorry to hear you are having such a roller coaster. It must be exhausting and it is great to hear you are having such good support. From my own experience when my partner finally succumbed to his illness he deteriorated very quickly which was pretty awful but maybe a blessing too. It sounds as if your Mum is comfortable and I am sure that you are making the most of this time with her, just make sure you are making some time for yourself too.

Cathy xx

[ChrisD]

My last update in this thread .....

Since I last wrote, Mum persisted in having 'good days' followed by 'bad days' - yesterday morning was very good, the afternoon quiet, the evening/night poor, a morning without meaningful communication and an afternoon in terminal decline. Amen.

[nikkis]

Sorry to hear this Chris, your love for your Mum really came across in your posts, and you clearly did an amazing job ensuring she was comfortable and well cared for,

Take care,

Nikki

[PCUK Nurse Jeni]

Hi Chris,

So sorry to hear this news.

You have been a great strength to your mum, and to others on here with your helpful posts.

Do take care,

Jeni.

[Cathy]

Hi Chris

I am sorry and sad to hear your news. In time you will take comfort from knowing that she died peacefully and at home.

Lots of virtual love and hugs

Cathy xxx

[sandraW]

Hi Chris,

I too am sorry to hear your sad news, I am sure your Mum will have felt very

loved and cherished, I too lost my Mum a couple of years ago,through old age,

but we too had a period of waiting for the inevitable outcome, you obviously

loved her dearly and she will always live on in your heart and mind, take care

sandrax

[EmmaR]

Chris Thinking of you stay strong.

EmmaR x

[ChrisD]

Many thanks for your thoughtfulness.

Never before have I witnessed the kindness and caring that are shown (to strangers) on the forums on this site - you are a remarkable community/family that give support and knowledge to many people.

The ability to 'get it off your chest' in this environment can be very cathartic and it is surprising how many others can empahthise with your sentiments - this is very powerful for one's own moral well being.

God bless