My Sadness...

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My Dad was diagnosed with the curse that is dementia in 2008. I have mentioned it on here previously and have corresponded privately with Old Shanker whose own Father suffered a similar fate. Having seen him deteriorate from the brilliant, intelligent and articulate man that he was to a point where he had to be admitted to hospital in late January was something that I have found incredibly difficult and upsetting. Now six weeks later we try and get to the hospital to see him on most days.

My only small crumb of comfort was that my Mother, who has done a fantastic job as his main carer, could start to get her own life back a little. A very social and entertaining lady, she has many interests and a wide circle of friends. In late February after a routine visit to her GP, a blood test showed some worrying results. An Ultrasound scan and a CT scan followed and yesterday we received the devastating news that she is suffering with cancer of the pancreas. The despair and desperation that I feel for her this morning, so soon after Dad's decline, is difficult to describe.

I know that most of us have to face up to sadness at some time in our lives. I read Doc's moving story of the loss of his daughter recently and LadyPutt mentioned losing her Mother to the same disease as my mine. However, I fear that there are some dark days ahead and I feel completely unprepared to cope. Thanks for reading

Sorry to say that Mum has been admitted to hospital with an infection to her gall bladder. The infection has spread to her chest and she now has difficulty breathing without an oxygen mask.

I have just got home from the hospital after being there with her with my wife and sister since 11.00am this morning. The consultant has told us that they are advising do not resuscitate. We are all desperately worried now.

Blue, I'm so sorry to hear your news. Fingers crossed for your mum, you and your family.

Oh Hell - been there. How rotten for you and your family!

Hope it's a false alarm.

Blue - so sorry to hear that things are not going well at the moment. Holding positive thoughts for you all.

Sorry to hear your news. As you know, I've been there so I know how difficult times like this are.

Fingers crossed Blue. All the best.

Finally had an appointment letter from the Royal Free Hospital in the post this morning for Monday 21st May.

I can't imagine for one moment that my dear Mother will now be strong enough to attend.

Just got back from the hospital after spending 4 hours at my poor Mothers bedside.

Mum told me she was slipping away and was going to die. I tried to reassure her but she told me she loved me and that I had been a good son.

The worst moment of my life, but I fear there is a worse moment yet to come.

How terribly sad for you Blue. It's mother's day here tomorrow, I hope she rallies and that you get to spend some more time together. Fingers crossed and hoping for the best. Grumps

Blue - I do so feel for you but I am afraid that your mum is probably right. Just take take heart from knowing that soon she will no longer be in pain and that she was well enough for you to be able to spend some quality time with her and that she was able to tell you how much she loves you. Sadly I didn't have that chance. Be strong - we are all thinking of you.

Thinking of you Blue. It probably does not help at the moment, but as LP says, it is good that you both get the chance to share your love and feelings for each other.

Don't want to say anything trite BCM.

Thinking of you and especially your obviously wonderful Mum.

think about the good things and impacts and not the current situation.

Talk to her about those things rather than what's currently happening.

LP just brought a wee tear to my eye - or perhaps it was just a speck of dust

Wisest words I've seen on here. Chin up Blue and cherish the good, not the bad

Just back from spending a couple of hours with Mum. Have to say she was a lttle brighter tonight, less sleepy and more talkative than of late. Although very poorly and frail, she managed to eat a small dinner of fish, peas and broccoli which was good to see.

I guess that she is going to have good days and bad, but it was uplifting to see her slightly better. For my part, my emotions are completely all over the place. In the office I am in a bit of a daze a lot of the time, I am finding it difficult to concentrate. Normally I am tenacious in my appetite for getting through work, now the slightest set-back or difficulty seems to bring me almost to a complete stop. A bit pathetic I know, but just the way I feel. Anyone experienced similar?

Not pathetic at all - it's perfectly normal. I just hope your colleagues understand and cut you some slack. Keep enjoying the quality time with your Mum. She will certainly have good and bad days - a lot depends on how she is reacting to the drugs she is being given. Keep going - we are all with you.

I'm sorry that I won't be able to follow your news for the next 10 days as I am off to Mauritius tomorrow (no golf this time) and won't be back online until I get home on 25th. Good luck and keep strong.

Thanks again LP for taking the time to reply...I wish you and LordPutt a wonderful holiday in Mauritius

Pleased to hear that your Mum is having some better days. Your feelings are totally normal - don't fret about them, it is at times like this when we realise what the really important things in life are (and it isn't work!).

Take care.

My wife lost her 2 year battle with cancer in April, we had been married for 40 years. We have 3 married daughters, and they have been a great comfort to me.

When any member of your family is diagnosed with cancer, it puts all family members life on hold.

My wife died in a Hospice, and all I can say is all the staff that work there are angels in disguise.


Just now I have my good and bad days, but my wife knew how much I enjoyed my golf, so I am now back out playing, but the hard thing, is coming home to an empty house, still my wife would be the first one to say, life must go on, so get on with it.

OPW, my condolences to you and your family.

OPW. My aunt lived and fought cancer for going on 30 or 40 years in various forms.

Those places can be godsent at times.

Sorry for the pain you must feel... but remember that she would want you to enjoy your time. Or she would not have known you loved your golf. Take pleasure in it and remember she would be happier knowing you still took to time to have pleasures in your life.

Thanks for all the comments

OPW...I have just got home from visiting Mother in hospital and read your post.

So sorry to hear that news, my sincere condolences and I hope that in the passing of time you have more and more good days and fewer bad.

Thoughts are with you OPW.

This is such a difficult thread to read, all sorts of memories surface.

OPW here's hoping those good days get better and more numerous. I know I would really struggle in your situation.

OPW, I feel for you mate and know exactly what you're going through. Last weekend we went over to Yorkshire to see my son-in-law and we noticed a huge change in him. He had put on a bit of weight, and the haggard face with dark eyes had vanished and he looked healthy again. As you know my daughter lost her battle at Xmas, but the s-i-l had suffered with her for the last couple of years, so it was great to see him looking so well at last. Yes its only been 4 months, and he still hates coming home to an empty house, and yes he still has bad days, but he gets through it for her.

He's got his garden in tip top shape and has done it for her. In your case your wife knew you loved golf, so go out and enjoy it as she would have wanted you to do. She would be happy in the knowledge that at least she won't have to listen to you walking her through your great shots, and where you messed up There will be some picturesque holes that you play, that your wife would have loved for the view. Maybe you should dedicate those to her when you play them, and try and play them well. I still see my daughters face every time I log on at work, as shes now a screensaver. So each day I say a few words to her.

Good luck

Thanks to everyone for all your kind words

Just back from holiday and have been reading all your posts. Sorry to hear your news OPW.

Cancer is such a horrid disease which can affect anyone. As you know, I lost my mother to the same type as that being endured by BCM's mum. LordPutt also lost his first wife to cancer at the age of just 39, leaving him to bring up their daughter (then aged 9) on his own with no help from the authorities at all. It makes my blood boil every time I think of it. He still has moments of tearfulness at times but we always keep her memory alive and often talk about her and there can be few couples who happily have two different wedding photos on display on their mantlepiece.

Hi LP, how was your holiday in Mauritius?

Hi BCM - it was wonderful but a bloody long way to go for a week, especially with a change of planes in Dubai. We ended up travelling for about 24 hours on the way back with the 3 hour time difference! I don't think we'd go again. But at least I brought the good weather back with me - or rather sent it on in advance. We didn't play golf as it is very elitist there and extremely expensive - which is probably why we didn't seem anyione on any of the courses. Best thing was going on a catamaran trip and seeing a family of wild dolphins complete with babies - aaahhh!

Hope all's OK with you?

Sounds like you had a good time LP, despite the travelling and no golf! We were in the early stages of planning a holiday to Mauritius this year, but with Mums illness that is on hold at the moment.

Thanks for asking, Mum is still currently in hospital having been there for nearly four weeks now, battling gall bladder and chest infections. She was very poorly indeed, breathing only with the aid of an oxygen mask and we were very, very concerned. However, pleased to say that her condition has improved and she is fighting hard. She is now able to breathe without assistance and has taken her first, few unsteady steps after being bedridden for over two weeks. Obviously she is very frail and thin, but I am slightly less anxious for her at the moment, although we are taking things one day at a time still.

She was far too weak to keep her appointment at the Royal Free London Hospital at Hampstead, but it has been rearranged for Monday 11th June. We are hoping that she may be strong enough to travel by then, albeit by private ambulance I suspect.

Mother's consultant has decided that she is fit to travel to London on Monday and the Royal Free Hospital have arranged transport from and back to the Essex Hospital where Mum has now been for over 5 weeks.

It is quite amazing really bearing in mind that on the 8th May her doctor's told us that Mum's infection was terminal and she could be gone within a few days. I cannot express how immensely pleased and proud I am of her, the determination and fight that she is showing is quite humbling.

I'm delighted to hear that news BC. Your Mum has done fantastically well to fight the infection. I hope that the journey to the RFH is comfortable for her, and that she can continue to build some strength.

Well done Mrs BCM (elder)

That's good to hear Blue, fingers crossed for some good news for a change

Just leaving to get the train to London and meet Mum at the Royal Free Hospital. Wish us luck

Everything crossed here Blue!

Good luck Blue

Hope you had a good day with your Mum at the Royal Free, Blue.

Thanks Grumps, as we perhaps expected the consultant decided that Mum is not currently strong or well enough for any further tests or treatment at the moment. They are suggesting that for now Mum continues with her recovery and has another CT scan at the end of June to ascertain if there are any changes to her tumour at that time.

Mum has now been in hospital for six weeks this coming Thursday and is beginning to get a bit fidgety and wants to come home. I am sure that her doctors will not let that happen until they feel that it is safe for her to do so and she is strong enough. However, the occupational therapist is coming to her house on this Wednesday to advise on such things as setting up a bedroom downstairs in preparation for when she is allowed home, albeit with the assistance of plenty of nursing care.

Thanks Mary, oldshanker and Grumps for your comments and best wishes, as always a great source of comfort to me.

Blue, I hope your mum continues to improve, it sounds like she has something to aim for in getting well and strong enough to go home. Fingers crossed for you

Blue - it is surprising what the OTs can come up with to help people maintain some independence at home. My Mum used to have various gadgets, carers coming in 3 times a day, and also one of those alarm pendants which she could press at any time, in case she had a fall or was taken ill. Hope your Mum does not have too long to wait until she is allowed home, as I'm sure that this alone will give her a lift in spirits.

Blue - have you been offered the services of the Macmillan nurses when your Mum comes home? We had them for our Mum and they were wonderful. Not only do they care for the patient, they are also wonderful at looking after the rest of the family as well, providing a sounding board for any worries and being able to give advice on things like claiming benefits which you are entitled to and may not be aware of.

Like Mary, I am sure that once she is able to go home, she will feel so much better in herself. for you and your family.

I echo LP's view regarding the Macmillan nurses, they're absolutley fantastic and once they get involved you can see and feel the dark clouds in the house lift. They have a very special way of dealing with the elephant in the room and before too long there'll be smiles instead of frowns. I was very surprised and also very pleased at the difference in my daughter after she had spent a little time with them. They even took over all the dodgy paperwork for things nobody wants to be bothered with. NHS forms, NHS special requests, benefits, tax etc. They just whized around and took control and knew all the short cuts to ensure that everything and anything that the patient needed was gotten. They even took my daughter to a local hospice and showed her the room she would get when the time came, or when it was felt that her husband needed a break. She was treated just like a 5 star hotel guest and she felt like royalty. She loved the place so much that she decided she wanted to be there at the end instead of at home or hospital. Good luck blue

No we have not had any conversation on the subject of Macmillan nurses as of yet. May well get the opportunity to raise this issue at the meeting tomorrow. Must admit that whilst I am absolutely delighted that Mother may be coming home shortly, I am also slightly apprehensive with the responsibility of her care falling back to the family and not the experts

Well that meeting went pretty much as I expected to be honest.

Two very pleasant occupational therapists visited the house this morning. Being apparent that Mum has the means to fund herself we are left pretty much on our own when Mum is discharged from hospital.

I can accept that but what makes it frustrating and difficult is that they are not allowed to recommend nursing care firms for us to engage for fear of being held liable and sued if there were problems. So we have to start with a blank canvas when looking for help in an area we know nothing about.

So far as Macmillan nurses are concerned we were told that they would only get involved towards the end.

Just had a quote from a care agency to provide a carer to help and assist Mum when she returns home next week.

£1,869.00 per week. Gulp...

Gees Blue, that's a scary number. Is that full time care?

I'm sorry that there doesn't appear to be much help in this regard based on your post from yesterday. Is there not some kind of Which rating system you could look at. Apologies for being absolutely clueless or insensitive about this kind of thing.

Thats the world of private health care for you Blue. Disgraceful.

Yes Grumps we are looking at full time care initially as Mum is very weak and frail at the moment. No need for apologies, I am not aware of any rating system. We were told yesterday that if you held assets exceeding £23,000 then you are not entitled to any financial assistance with nursing care once you are discharged from hospital.

Yes agreed Digs, I thought we would be looking at around about £1,000 per week, £1,250 absolute tops.