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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Dealing with Mum's diagnosis...

Postby sandraW » Mon May 02, 2016 2:47 pm

Hi CLM,
Sorry to hear the news about your Mum, and I understand fully where your Dad is coming from, he just wants to do all he can for her, as he loves her so much.
I also understand about the friends thing, the trouble is unless you have been through something like this in you own life its hard to understand and know what to say, so people don't say or do anything instead of just being honest and saying I'm sorry I just don't know how to help you will you please tell me what I can do.Its lovely however to hear that you have one friend that know just how to help you, through these difficult times.
Don't feel guilty about wanting you mum to be at peace and not suffer any more, its a perfectly natural feeling, and at odds with wanting her to stay, its so hard seeing the ones we love go through this terrible journey.
Sending a cyber ((Hug)) love and strength to you all and as Leila rightly says we are here when you need us sandrax xx

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Mon May 02, 2016 3:54 pm

I do understand it must be hard for people who haven't been through this to know what to say, and as I said I don't want it to be all I talk about. But I've just come to see how wrapped up in her own life one of my friends is. I'm one of those people who will give others second, third, million chances, but I think I've just had enough now. I don't expect people to change their lives for me, but a little understanding that my parents come first for now would be nice. Hey ho. I do have good friends who are there for me no matter how much of a grot bag I may have been to them and I know I can rant and vent on here for as long as I need.

Thank you all for all your support.
CLM x

Fifi

Re: Dealing with Mum's diagnosis...

Postby Fifi » Mon May 02, 2016 5:30 pm

CLM,

So sorry you are struggling with these ignorant people, but that's all they are, ignorant. They aren't worth your stress.

At least you have one good friend that can be there you, she sounds priceless, and good friends are.

Leila xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Mon May 02, 2016 9:07 pm

CLM, I have also encountered the same and you are right... people that were needy and selfish seem to be exacerbated now. You should not have to be worried about other people right now. It is your turn to be the one that needs support and anyone that detracts from that right now is taking emotional time you do not have. Don't feel bad about taking that time, your true friends understand. x

PCUK Nurse Jeni
Posts: 1084
Joined: Mon Jun 14, 2010 1:30 pm

Re: Dealing with Mum's diagnosis...

Postby PCUK Nurse Jeni » Tue May 03, 2016 5:05 pm

Wonderful post Sandra - thanks so much for sharing it.

Jeni.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Dealing with Mum's diagnosis...

Postby Proud Wife » Tue May 03, 2016 5:55 pm

CLM you can rant on here until your heart's content. We too are quickly realising who are true friends are.

A little understanding is not a lot to ask for and of course your parents come first, it's just so sad we are all in the same boat.

Take care of yourself too xxx

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Thu May 05, 2016 5:50 pm

Unfortunately, we are now preparing ourselves for the worst.

Mum has deteriorated rapidly in the last week and sadly she is getting worse by the day. Thankfully, she isn't in any pain and her morphine dosage has actually been reduced, but she is asleep most of the day and can very incoherent when she is awake.

The district nursing team are coming in again daily to assist dad with her personal care, as the social worker from the hospice said he needed to look after himself and spend 'quality' time with mum, rather than doing these jobs which were making her grumpy with him. As stubborn as he is, he is realising quite how much it took out of him trying to wash her daily etc. She's also not accusing him of lying to her quite so much now that he's taken that step back.

We are also starting all the phone calls to relatives and friends who were due to come in the next few days and even those who weren't, just to let them know the situation and giving them the option of remembering how she was when they last saw her when she was stronger. The vast majority still want to come as they want to support us as much as seeing mum. Today dad's sister and her family came up. Mum wasn't really 'with it' when they arrived, but was able to give them all a proper hug from her bed when they left. It was heart-breaking to watch, but it was as if she was aware that she probably wouldn't see them again.

I had to go and speak to my granddad this morning and start to prepare him. Having been in denial (understandably) at the beginning of this, he has been much more accepting of what is going on. While he only lives around the corner from Mum & Dad, his health is suffering too and relies on one of us to drive him round here to see her. Having to explain to your 87 year old granddad that his daughter is slowly fading away is one of the hardest things I've ever had to do. Again though, Mum sensed he was here and had some energy left to be awake for part of his visit.

Dad and I had a good chat last night about everything. Everyone has always said I needed to tell Mum what I needed/wanted her to hear, but also my Dad needs to hear that too. Mum told me a while back that if roles had been reversed, she doesn't think she would have been able to cope the way he has and would have needed help from the start. I wanted him to know, that if it comes to it and Mum does need to go in to the hospice, he has done everything he possibly could for her. A few tears were had, but he needs to know he has absolutely no need to feel guilty about anything.

As I'm sat here writing this, both Mum and Dad are asleep and I have the sounds of them both snoring accompanying the clicking of the laptop keyboard-some things never change!

CLM x

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Dealing with Mum's diagnosis...

Postby boa » Thu May 05, 2016 7:03 pm

Sorry to here this and I can only imagine how difficult it was to tell your granddad what was happening. Both you and your dad are coping so well. Sending you warm thoughts. Catherine

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Dealing with Mum's diagnosis...

Postby sandraW » Thu May 05, 2016 7:36 pm

Oh CLM, I am sorry to hear that your mum is deteriorating, but you are doing a such a marvellous job, your Mum and Dad must be so proud of you.
I wonder if you are a bit like me, your way of coping is being in charge and getting things sorted. Lovely that you spoke to your Dad I agree he needs to know he has done all he can do, tears hurt no one in fact they can help. Your poor granddad too, loosing his daughter, you really are one amazing lady, but please don't forget about you
I hope your mum's journey continues to be pain free and she just drifts away surrounded by all your love, take care and be sure I am thinking of you all and sending love and strength sandrax xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Thu May 05, 2016 10:08 pm

Sending you my love CLM. My heart goes out to you at this time. Take care. x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Dealing with Mum's diagnosis...

Postby sheena » Thu May 05, 2016 11:14 pm

In my thoughts xx

PCUK Nurse Jeni
Posts: 1084
Joined: Mon Jun 14, 2010 1:30 pm

Re: Dealing with Mum's diagnosis...

Postby PCUK Nurse Jeni » Fri May 06, 2016 10:28 am

Hi CLM,

Thank you for sharing about your mum on the forum. Its not easy at times to open up about the person you love, and I know that you have found support in your "forum family".

Its really positive to hear that your mum is not in any pain and is able to "sense" peoples presence with her, and show her affection to them as they leave. As humans, we have remarkable resilience when we need it, and you are obviously a great example of this.

I actually really loved what you wrote about your dad - and you are absolutely right, he needs to hear the encouragement as well, and know that he has done all that he could do. And absolutely agree with the social worker about him spending "quality time" with her, as her husband. Most folk want to care for their loved ones, but sometimes, taking a step back to be the husband/wife/son/daughter etc..., is the best thing, and less exhausting also. As Sandra says, tears are good. And I am sure that your dad appreciated your reassurance.

Take care CLM,

Jeni.
Pancreatic Cancer Specialist Nurse,
Support Team.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Dealing with Mum's diagnosis...

Postby Proud Wife » Fri May 06, 2016 11:35 am

I am so sorry to hear about your mum CLM. When she rejected treatment, I was so hoping that your mum would be well enough to have some real good quality time with the family, before this vile disease took hold but it seems to have done so rapidly. All I can say is I am thinking of you.

Take care xx

CurlyLittleMiss
Posts: 23
Joined: Fri Apr 01, 2016 12:25 am

Re: Dealing with Mum's diagnosis...

Postby CurlyLittleMiss » Fri May 06, 2016 3:18 pm

Mum is still fighting, she's just told me off for 'nagging' her to drink something!

We have agreed that it is probably now the time to start thinking about hospice care, so dad and I are going to look around our local hospice in a while. I've heard nothing but good things about the place, but we were advised to go so that if mum does end up there, we aren't trying to take in all the surroundings at the same time as getting her settled.

At least the sun is shining and she can feel the warmth of it coming through the patio doors by her bed.
CLM x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Dealing with Mum's diagnosis...

Postby Dandygal76 » Fri May 06, 2016 6:10 pm

Oh CLM, the sun shining is good isn't it. Life has made us appreciate these things so much more. I hope you get your mum into the hospice and that she is peaceful and not in pain. Thinking of you. x