My Sadness...

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My Sadness...

Post by BlueCoverman on Tue Mar 13, 2012 8:06 pm

First topic message reminder :

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
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Re: My Sadness...

Post by oldshanker on Fri Jun 15, 2012 4:58 am

BlueCoverman wrote: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... Shocked

We looked into this with my Dad and came to the conclusion we just could not afford it, even with all the family helping out. So we had to sell the family home so that Dad could be looked after in a registered home that specialised in dementia. Seem to remember it was about that figure a month, which was covered at the time by investing the sale proceeds and paying for the care home and everything out of the interest - of course then, we were getting about 6-7% tax paid. Couldn't do it now!!
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Re: My Sadness...

Post by Davie on Fri Jun 15, 2012 5:40 am

Blue - I can't help with any details as when I was in a similar position to you (although my mother wasn't as ill as you, just old and unable to cope herself), my older sister looked into the situation. My older sister is a bit of a pitbull to be honest (though I love her dearly) but she is tenacious to say the least. She told me that there is a lot of assistance available but you have to fight for it! It's all stuff you are entitled to, but you have to go looking for it.

The £23k might be significant and if your mother has assets worth more than that it serious may be worth looking at ways to reduce those assets so she gets what she is entitled to - but you WILL have to go looking for it

The way my sister put it to me was that you don't have to be dishonest about it, but you really have to chase everything you are entitled to for your mum - they don't clearly advertise all the things you are entitled to - you have to go looking for them and apply which to my way or thinking is clearly wrong

Don't give up hope though mate - and even if your mum has a lot of assets that you can't "redistribute", at rates like you are talking about, they won't last long so make sure you are in a position to claim everything you can when she eventually drops below the £23K mark.

Sounds a bit heartless but my thoughts are with you as I know what my sis went through for my mum - I'm sure after all the years your mum has lived she's earned everything she's entitled to - I just wish that it was made easier for folks in later life. Good luck with your endeavours
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Re: My Sadness...

Post by BlueCoverman on Fri Jun 15, 2012 9:55 pm

Thanks for that post Davie, will take that on board as the days and weeks progress.

I too wish that it was made easier for folks in later life, goodness only knows how people cope if their family are not local to them, or they have been left on their own.
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Re: My Sadness...

Post by BlueCoverman on Wed Jun 27, 2012 11:47 pm

Well Mother arrived home yesterday. She was getting more than a little despondent in hospital so she is pleased, after nearly two months, to be back at home.

She has a full time carer with her as she is very frail and weak. We are hoping that now she is at home she will be able to find some energy and get a little stronger.
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Re: My Sadness...

Post by 1GrumpyGolfer on Wed Jun 27, 2012 11:52 pm

Good stuff Blue, it must be very comforting to her to be back in her own bed so to speak. Fingers crossed that she starts to pick up Flower

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Re: My Sadness...

Post by Mary_S on Thu Jun 28, 2012 6:56 am

Pleased to hear that your Mother is back in her own surroundings Blue. Hopefully that will provide a psychological tonic, which will help her to regain some strength.
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Re: My Sadness...

Post by BlueCoverman on Thu Jun 28, 2012 8:12 am

Thanks Grumps, Mary...that is what we are hoping for Cross Fingers
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Re: My Sadness...

Post by BlueCoverman on Fri Jul 06, 2012 12:07 am

Mum seems to be getting weaker rather than stronger. The carer said that she did not have the strength to do up the buttons on her blouse this morning.

This is the first time that I have had to watch somebody I love suffer with cancer. I have just sat with her by her bedside, her face drained and empty of colour, and I feel so bloody useless.
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Re: My Sadness...

Post by LadyPutt on Fri Jul 06, 2012 2:41 am

I know just how you feel, Blue. You feel so helpless but just your presence, which she can sense even if she can't see you, will be a comfort. At least she is at home in her own bed with familiar things around her rather than being in an institution.

Keep strong Flower
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Re: My Sadness...

Post by oldshanker on Fri Jul 06, 2012 4:29 am

As you know, many of us on here have been where you are now and understand entirely your feelings.

Useless though you may feel, it is essential for both your mother and yourself that you do exactly as LP says. As much as possible, you must give her your strength, now when she most needs it.

Most important of all, do not think that trying to act normal around your mother and living your normal everyday life, is ignoring the issue. It is not!

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Re: My Sadness...

Post by oldparwin on Sat Jul 07, 2012 11:37 am

I was their with my wife, and know what you are going through, the only thing I could do, was to make sure she was free from pain.

All I can say is that you need your family to support you as much as they can, and let them help you through this terrible terrible time.

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Re: My Sadness...

Post by BlueCoverman on Sun Jul 08, 2012 2:24 am

LadyPutt, oldshanker, oldparwin...thank you for your advice and support
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Re: My Sadness...

Post by BlueCoverman on Mon Jul 16, 2012 6:59 pm

Mum is back in hospital, we had to call an ambulance yesterday morning as she was struggling with her breathing. She is back on oxygen again and the doctors gave her two blood transfusions each lasting 3 hours as she has become quite anaemic.

It was a long day yesterday, my wife and I did not get home until after midnight. I feel completely drained this morning and absolutely dreading a busy week ahead in the office
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Re: My Sadness...

Post by Doc on Mon Jul 16, 2012 8:59 pm

BC I feel for you and your family mate. My daughter had to have an oxygen generator at home with her for the last few months, as she was on it continually. So that could be the option for your mum. It's unobtrusive and the only thing you hear is a low purr in the background. There is of course tubes hidden behind settee etc, but its the best option for keeping patients at home instead of in hospital.
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Re: My Sadness...

Post by 1GrumpyGolfer on Mon Jul 16, 2012 9:18 pm

Blue, I'm sorry to hear that. Hopefully the transfusions will help and speed the recovery from this infection. Thinking of you and your family at this time Grumps

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Re: My Sadness...

Post by Mary_S on Mon Jul 16, 2012 9:22 pm

Sorry to hear this Blue - thoughts are with you and your family, and hoping that the transfusions will help.
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Re: My Sadness...

Post by oldparwin on Tue Jul 17, 2012 8:37 am

Sorry to hear your news blue, thoughts are with you
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Re: My Sadness...

Post by BlueCoverman on Thu Jul 19, 2012 10:37 am

A bit of a mixed day for me tomorrow.

My Dad is finally being discharged from hospital tomorrow afternoon after being admitted there in January. It was initially for assessment to establish what medication was suitable for him in his battle against dementia which we were told would take on average 6 weeks. We are not complaining though, he has had wonderful care from the staff during his stay. He is being moved to a nursing home which is a couple of miles from us, which will be so much better than the 30 mile round trip that we have frequently done whilst he was in hospital.

My Mother's return to hospital looks like it could be a longer one than we hoped. They told us tonight that they are going to do a CT scan tomorrow and then transfer her to the oncology ward "when a bed becomes available, which is likely to take a few days" I fear that they suspect that the cancer has spread, desperately hoping that is not the case.
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Re: My Sadness...

Post by 1GrumpyGolfer on Thu Jul 19, 2012 11:08 am

Oh Blue, such a bittersweet day. Fingers crossed for your mum. Thoughts and prayers with you and your family.

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Re: My Sadness...

Post by Mary_S on Thu Jul 19, 2012 4:51 pm

Blue - pleased to hear that your Dad has been able to move on from his stay in hospital.

Fingers crossed, and my thoughts are with you re. your dear Mum.
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Re: My Sadness...

Post by Doc on Thu Jul 19, 2012 6:11 pm

Blue I feel for you mate. When was the last time your parents actually saw each other? heartbreaking.
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Re: My Sadness...

Post by BlueCoverman on Thu Jul 19, 2012 8:12 pm

Thanks Doc. The last time we managed to get Mum to see Dad was in hospital on Sunday 1st July. It was good to get them together and Mum was pleased to see him after such a long absence. Must admit however, I did find it a little upsetting to see them both in wheelchairs simultaneously
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Re: My Sadness...

Post by LadyPutt on Thu Jul 19, 2012 10:12 pm

Dear BCM - Flower Sorry, I don't know what to say.
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Re: My Sadness...

Post by BlueCoverman on Sun Jul 29, 2012 3:13 am

My birthday today. For some time I have had this irrational fear that today would be the day that I would lose Mum. Stupid I know
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Re: My Sadness...

Post by Davie on Sun Jul 29, 2012 6:24 am

Happy Birthday Blue - and hope you got to spend some time with Mum today. Also saw your post on the "game today" thread; funny how the game does that to us - a stressful week for you and a bad start and then you relaxed and went with the flow. Make the most of those moments - you've had (and will have) hard days but enjoy the good times also. You know Mum would want you to
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Re: My Sadness...

Post by BlueCoverman on Sun Jul 29, 2012 9:06 pm

Thanks Davie. That is nice words and good advice. Cheers
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Re: My Sadness...

Post by BlueCoverman on Wed Aug 08, 2012 10:49 pm

Mum is back at home now with 24 hour private care.

We have a MacMillan nurse coming to meet her this afternoon for the first time. Must confess I am a bit anxious about how she will be received by Mum and that Mum will get upset
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Re: My Sadness...

Post by Doc on Wed Aug 08, 2012 11:38 pm

BC I think you will be pleasantly surprised, as I was. My daughter thought her lady was fantastic, and indeed rang her at anytime to talk about things she didn't want to say to the family. Between them they sorted alost everything out, including documentation and things like benefits she was entitled to but hadn't claimed. She was always cheery after her visit and this loveley lady would always drop in even when not on duty, if she was in the area. fantastic people and you should nip home and meet her as it'll put your mind at rest. good luck blue
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Re: My Sadness...

Post by BlueCoverman on Wed Aug 08, 2012 11:52 pm

Thanks Doc. We are all going to meet her, myself, my wife and my sister, I am sure you will be right. Just about to leave the office now
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Re: My Sadness...

Post by 1GrumpyGolfer on Thu Aug 09, 2012 1:03 am

Good luck Blue, fingers crossed for you and your family. Hope it goes well Flower

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Re: My Sadness...

Post by LadyPutt on Thu Aug 09, 2012 2:19 am

BCM - Macmillan nurses are fantastic and know just how to approach your Mum to make her feel comfortable. Your nurse will also be a great support to you and your family so use her when you need to. Don't feel embarrassed or awkward about it - that's what she's there for. I just wish there had been Macmillan nurses around when LordPutt's first wife, Jackie, died at the age of 38 as he was left without any support or counselling at all - and a 9-yr-old daughter to bring up on his own. It still makes me angry to see him so upset at times.

I hope all goes well and that you all get the right support.

Flower
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Re: My Sadness...

Post by diggers on Thu Aug 09, 2012 2:39 am

Good luck Blue, Im sure she will be a lovely lady (or he a true gent, tehy must have male ones I guess) and they will be a massive help and support for you.

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Re: My Sadness...

Post by Mary_S on Thu Aug 09, 2012 3:44 am

Hope it all goes well Blue. From what I have heard of the Macmillan nurses, your Mum and the family will be getting the best support available.
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Re: My Sadness...

Post by BlueCoverman on Thu Aug 09, 2012 5:19 am

Thanks all, the meeting went pretty well all things considered. The MacMillan nurse was a very pleasant young lady named Charlotte, who displayed all of the qualities that you suggested she would. My sister had been sitting on a stack of assessment forms for a couple of weeks, which Charlotte was more than happy to take away and complete, much to my sister's relief. Charlotte invited Mum to a weekly lunch at the local hospice which Mum seemed reasonably interested in. The next meeting was arranged for three weeks time.

The only time that I saw Mum momentarily upset was when Charlotte asked, "Is there anything that you miss doing because you can't do it now?" and Mum replied, "Driving my car which gave me the independence to go to lunch and play bridge with my friends, and to shop for myself". Brought a bit of a lump to my throat I don't mind admitting.
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Re: My Sadness...

Post by Doc on Thu Aug 09, 2012 6:39 pm

Great news mate, and now the ice has been broken it'll be plain sailing now (Of course it won't in reality) From my daughters experience she was introduced to the hospice, and was really pleased because it in no way resembled or felt like a hospital. She was shown around and was treated like a hotel guest in a 5 star place. She quickly decided that this was the place she wanted to be at the end (Never made it) But she had her own room with a lovely private garden, fantastic. The staff were exceptional, so I'm guessing that your mum will even look forward to her wekly lunches.
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Re: My Sadness...

Post by BlueCoverman on Fri Oct 05, 2012 12:55 am

Mum's birthday today and we are out later for a family celebration meal.

It is a day I was not entirely sure that she would see if I'm honest. She is at home with the assistance of a 24 hour nurse and so much happier after long spells in hospital this year. Although she is sometimes a little despondent because she can only walk with the aid of a frame now, she is doing wonderfully well all things considered. Her latest scans showed that her tumour is unchanged in size and that there is no sign of the cancer having spread to her bones which was great news.

Thanks to all for your continued interest in this thread.
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Re: My Sadness...

Post by Mary_S on Fri Oct 05, 2012 1:18 am

BC - I have no doubts that you will all enjoy and treasure this special day with your Mum. So pleased to hear that things have stabilised at the moment. Make sure that the Birthday Girl is thoroughly spoilt! Flower
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Re: My Sadness...

Post by 1GrumpyGolfer on Fri Oct 05, 2012 1:37 am

Blue, that's great news. I'm glad you can have some celebrations with your Mum and family. All the best Grumps

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Re: My Sadness...

Post by oldshanker on Fri Oct 05, 2012 4:17 am

It has obviously made a big difference to your Mum that she can be at home now.
Man hug to you BCM and a big hug for your Mum.
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Re: My Sadness...

Post by Davie on Fri Oct 05, 2012 5:35 am

Not much more to add to what others have said - happy for you Blue that you can celebrate her b'day

I know it's rude to enquire about a lady's age but what is the milestone this year? Hopefully she'll see more birthdays where you have to spoil her rotten
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Re: My Sadness...

Post by LadyPutt on Fri Oct 05, 2012 8:50 pm

What fantastic news! I'm so glad that you have all had a chance to celebrate this special day and that your Mum is at home where she must feel more comfortable and "normal".

Cross Fingers there are many more birthdays and other celebratory milestones to come. Hug
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Re: My Sadness...

Post by BlueCoverman on Sat Oct 06, 2012 12:08 am

Thanks all, Mum had a lovely day. My wife took her to see my Dad at the nursing home in the morning and then three of her friends took her to lunch at the local golf club. In the evening we took Mum to her favourite fish restaurant, my wife and I, my sister and her husband and the four grandchildren and we had a very happy evening.

I think she is understandably worn out today, I have just spoken to her nurse who said she has been asleep in her chair most of the morning! At the last count she had received 40 birthday cards and her house resembles something like a florists shop!

Davie if I told you that she would never speak to me again! Wink
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Re: My Sadness...

Post by BlueCoverman on Tue Dec 04, 2012 10:42 pm

More scans for Mum this Thursday at hospital and a further consultation with her oncologist on 17th December.

The worst thing for her now is to try to come to terms with the lack of mobility and independence that being unable to walk more than a few steps with the aid of a frame brings. She does get so fed up with sitting in a chair most of the day, it must be difficult when you have been busy all your life.

So far we have paid £34,000 in four and a half months for her to have a carer with her 24 hours a day. She would be heartbroken if she knew that her hard earned savings were being spent at such an alarming rate and I feel guilty every time I issue a cheque, but what else can we do. At least it enables her to live in her own home which naturally is what she wants.
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Re: My Sadness...

Post by Mary_S on Wed Dec 05, 2012 5:22 am

Hope that all goes well at the hospital BC. It is very unfair how people have to use their savings, after working so hard to accumulate them - there should be a certain amount of State care available for everybody.

In some ways we're lucky, as Mum has also lost a lot of mobility, but her short term memory loss means that she doesn't seem to dwell on it too often.

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Re: My Sadness...

Post by oldshanker on Wed Dec 05, 2012 5:57 am

BCM - take it from one who knows, the guilt is far greater if you move her to a place that she does not know (I know you have no intention of doing that). But of course, we have to assume that the money pit is not bottomless!

Hope the scans bring good (if it can be) news and that your Mum is looking forward to a family Christmas. Cross Fingers
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Re: My Sadness...

Post by 1GrumpyGolfer on Wed Dec 05, 2012 8:11 am

Blue, I hope the scans and consultation bring as much good news as possible.

That's a scandalous amount of money but what are you going to do instead? The care companies know this and charge accordingly as they have you over a barrel.

Hang in there mate, you're spending that money for all the right reasons.

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Re: My Sadness...

Post by LadyPutt on Wed Dec 05, 2012 11:29 pm

Agree with everything the others have said - you are spending the money for all the right reasons, even if it is a scandal you have to.

Cross Fingers for tomorrow.
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Re: My Sadness...

Post by BlueCoverman on Thu Dec 06, 2012 8:08 pm

Thanks all for your support, Mary sorry to hear that your Mum is suffering with ill-health.

My wife and I went to see Dad at the nursing home last night. When we walked into his room he was lying on the bed wearing just a pyjama top and incontinence pads which he had ripped open. The carers had not put his pyjama bottoms on or even covered him in a blanket, it really upset my wife. What a terribly undignified way to end your days.

He is so thin now, all his leg muscles have wasted away. He looks like one of those poor starved souls from a World War 2 prisoner of war camp. I really don't know what is worse, Mum's cancer or Dad's dementia.
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Re: My Sadness...

Post by BlueCoverman on Sat Dec 08, 2012 12:38 am

An afternoon spent yesterday at the hospital with Mum. She had to consume a big bottle of contrast drink and a similar volume of water one hour before the CT scan.

She did manage to drink it all although it was a bit of a struggle, she said that it tasted vile. It certainly didn't look in the least bit appetising. Unfortunately we got caught in rush-hour traffic on the return journey and with all that liquid inside her she was very uncomfortable and desperate for the ladies by the time we reached home.

We see the oncologist on 17th December, I'm feeling quite nervous about what the results of the scan may show.
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Re: My Sadness...

Post by 1GrumpyGolfer on Sat Dec 08, 2012 12:45 am

Fingers crossed Blue, I'm sure we're all hoping that it will be as much good news as possible. Just try to carry on as normal round your Mum because she'll pick up on your nervousness. Keep your chin up mate, Grumps

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