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I need to ask the question! Do they pass elderly dementia patients by?

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
Hi all

Dad has mixed dementia, frontal lobe dementia, vascular dementia. He is blind, neutropenic and has a heart condition, arthritic knee and hip joint, he is 80.

I found out from one specialist in late Aug (not related to the surgery) that when my Dad had is gall bladder removed(early July) it was found he had gallbladder cancer. He was so sorry to tell us as it was nothing to do with his field but said I must not leave it, he was going to chase the surgeon up who removed the gallbladder and if I had not heard anything in a week I must ring the surgeons secretary.

I heard nothing so rang and had to leave a message regarding Dads diagnosis, I think it was 3 days later a lady rang me back, she said it must have been a shock to be told about the cancer ect ect. She said that it did not look like the type of cancer that spreads, and they think they got it all, she went on to ask if I thought Dad would cope with surgery, I said no but would need more details before a decision could be made and it would have to be explained to dad and would have to help him make the decision. This call was on thurs, friday I had a missed call saying they wanted to make an app for ct scan, I returned the call and was told I had to take Dad on Monday for ct scan as the surgeon wanted an urgent scan????

Dad went 2 year from first having gallbladder infection that required surgery to actually having the gall bladder out, we are nearly 3 month since they discovered the cancer, and to my mind cancer spreads!

3 week since the scan and we have heard nothing? The inconsistences from what one doctor says to what happens leave me to think they are not bothering about him.

Sorry for this long post, tried to keep it relevant but wanted to ask if anyone else has felt that their elderly relative had been passed by

Thanks

Turmoil
 

Jo1958

Registered User
Mar 31, 2010
3,724
0
Yorkshire
Turmoil, hi
I don't know but it does sound as if you are in an awful situation with information from all sides and action from none. You must be very worried about your dad's health and also about the ifs and buts of what you do know and what you don't, a simply dreadful place to be.

I do think that surgery for anyone with dementia is a huge risk and the assumptions made by clinicians about patients have to have a bearing on how they react, I do hope that you can find a way of getting to the truth of the matter and are able to make informed decisions that you are happy with in regard to your dad's treatment.

My heart goes out to you as you try to find a way through this mess, I look forward to hearing how you get on.
With kind regards from Jo
 

rajahh

Registered User
Aug 29, 2008
2,791
0
Hertfordshire
My husband has Alzheimers plus prostate cancer, the initial treatment caused bad reactions and I decided to stop the treatment.

The consultant would start the treatment again tomorrow if I agreed to it, so I do not see that he is being neglected because of his dementia.

This is bound to differ from consultant to consultant, but any sort of treatment could be very distressing for a dementia patient, and as others have said on this forum many times, you have to weigh up he quantity of life against the quality of life.

I hope you get some definite news soon, and then can make an informed judgement

Jeannette
 

zeeeb

Registered User
I guess, while you have this time with the doctors procrastinating, it's time to have a serious think about if you would want to treat the cancer, and if your dad would want the cancer treated in this scenario.

Obviously, any kind of surgery and extensive, stressful treatment can make the alzheimers move a lot quicker. So you need to have a think, and a talk with any relevant family members about the possibility of what happens if you do the full cancer treatment and then his dementias gets so bad very quickly that he has little or no quality of life. It's an incredibly difficult conversation to have, but a very important one.

Essentially it comes down to what he would have thought if he had known he was going to get dementia and cancer, what do you think he would have wished for. What you would do in the same scenario.

I've thought long and hard about this in relation to my mum, and myself (having a strong family history of early onset alzheimers). Mum has always said she doesn't want extra-ordinary measures taken, and has written it up in a medical directive. This takes the load off my mind. I feel the same, if I were in her position, with alzheimers and if I were to get cancer / heart problems etc. I would refuse treatment, pain management and palliative care only.

I'm glad we've had these discussions over the years, right from back when I was a teenager, and right back before alzheimers (and parkinsons) was on the scene for her, so I'm very clear in my mind what mum wants, not sure that the rest of the family would agree, but at least I know the conversations I've had with mum pre-alzheimers diagnosis, and she has the medical directive to back it up.
 

Mamsgirl

Registered User
Jun 2, 2013
635
0
Melbourne, Australia
Hi turmoil, sorry to hear all your poor father's going through. Sounds like nobody's prioritising getting together the information you need so your Dad can make important decisions. Instead your enquiry seems to have been treated as a request for extra investigation :eek:

My feeling FWIW is that it's not your father's dementia at the bottom of this so much as specialist medicos not realising that while they may have trained to be a hammer, not everything that looks like a nail is just a nail (to torture a saying).

Perhaps a social worker to help liaise between specialists?

Good luck,
Toni
 

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
Hi there

Thank you all for your posts. I do not believe Dad would handle any more surgery he is too frail and too many health conditions so if the cancer has spread, which I believe it must have after nearly too years then it would be radiation treatment I guess, not sure about him coping with that either.

The main problem is lack of information and facts. I find I am putting 2 and 2 together and coming up with 5!

Dont get me wrong when Dad was diagnosed with the cancer, I felt relief and thought he had been given a get out of jail card to play against this awful dementia.
However I still feel he is entitled to the facts and as a family we should be too.

One saving grace is Dad has forgotten about all his ailments and believes he is 60.

If I do not hear anything this week I am going to go see his doctor and see what he knows.

Thanks again and will let you know how it goes.

Turmoil x
 

bemused1

Registered User
Mar 4, 2012
3,402
0
Hi Turmoil
A little time to pen a reply. The more I hear of our wonderful health service the more I understand why my husband just says NO to evrything. Certainly my own experiences dealing with a relatively minor problem like constipation has not done much for my opinion of the medical profession. It seems they feel they can write people off if they feel like it. I also think you are entitled to the facts.
 

Soobee

Registered User
Aug 22, 2009
2,731
0
South
I think it is just that the NHS is struggling more so things get missed, not passed on, not chased up etc. I don't honestly think it is down to dementia because I had to chase up my dad's cancer centre several times on his behalf and he didn't have dementia.

The consultant was good, their receptionists were on the ball, but the nurse assistants who booked referrals for scans etc were useless - we called one "nurse Dilly-Dally" as she never got anything right. Dad had to wait weeks for scans and biopsies that possibly would have led to him living longer.

I can only suggest you keep chasing on his behalf until you get to discuss the options with someone who knows what he'd have to go through if treated.
 

beech mount

Registered User
Sep 1, 2008
1,524
0
Manchester
Just a comment on doctors,i went today for my flu jab and there must have been over 100 people there, we had to wait outside in the rain while they let one person in at a time! i came home, i was not going to stand there for over a hour.
John.
 

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
Hello again

A letter arrived today at 3pm, Dad has an appointment tommorrow at 1pm:eek::eek: I have no car tomorrow! So 4 busses for me and a taxi for us there and back to hospital. Cannot help 2 + 2 = 5!

Grateful that we may have a clearer picture soon though!

will let you know how it goes.

Thank you again for your replies:D I feel drained (not wanting to play the pitty card) but it really helps that you great people are there and I hope at some time I may be able to give a bit back too!

Turmoil x
 

zeeeb

Registered User
make sure they don't just shunt you out the door without the answers you need, or the appointments set. That would ruin their day totally if you decided to tell them, ah, no, i'm not leaving until I get some answers, see how that fits into your schedule Doc!
 

Jo1958

Registered User
Mar 31, 2010
3,724
0
Yorkshire
Turmoil, hi
Fingers crossed that your journeys are on time and everything goes well for you and your dad tomorrow, I'll be thinking of you both.
With best wishes from Jo
 

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
Just a comment on doctors,i went today for my flu jab and there must have been over 100 people there, we had to wait outside in the rain while they let one person in at a time! i came home, i was not going to stand there for over a hour.
John.

Oh no that is so awful, I was lucky this time first time ever I was in and out in 3 mins, however my Dad has not even had a letter! I usually end up doing my shopping then call at the supermarket chemist get the jab (pay of course) then check out my shopping! Shopping, flu jab in one go, result!

Good luck
 

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
make sure they don't just shunt you out the door without the answers you need, or the appointments set. That would ruin their day totally if you decided to tell them, ah, no, i'm not leaving until I get some answers, see how that fits into your schedule Doc!

I usually listen and say nothing but not now! Dad is shrinking before our eyes so I am not going to be fobbed off, for Dads sake.
 

turmoil

Registered User
Feb 3, 2013
239
0
West Yorkshire
Update on Dads appointment

Hi

Heck I am finding this hard to write and hard to find the correct words but here goes.

There is a specialist team in the next town to ours who have looked at Dads results from ct scan, blood tests and the gall bladder cancer itself! It appears the cancer has spread outside the gallbladder so the treatment is to take a slither away from the area surrounding where the gallbladder was, ie liver, bile duct! There is no guarentee the cancer will not return.

Dad said yes he will have surgery, however I do not believe he fully understands the whole picture, me and the nurse specialist suspect when the surgeon sees Dad and reviews his other health issues he may wish not to do the surgery, feeling the risk is too great.

I do not want him to have the surgery, I believe he still has quality of life at the moment, he lives in his own home and can manage to take his dog on a short walk, (I know he is not safe to live on his own but it is his decision and he refuses to move)

I worry as the two previous surgeries caused delerium which he never fully recovered, he became more confused and frail each time, they were keyhole, this new surgery is a bigger opp and cannot be done keyhole.

I do not think I mentioned before that when dads cell are reproducing they are mutating so I worry if he went through surgery is he just going to get cancer somewhere else.

I feel Quality of life is better than quantity of life for him.
I have agreed to take him to see the surgeon in the next town as it is his wish, but I hope sense prevails and I will try and explain my concerns to him, although by mid week if not before he will have forgotten about the cancer.

Love to all and thank you for your concern and comments.

Turmoil x
 

rajahh

Registered User
Aug 29, 2008
2,791
0
Hertfordshire
Hw about writing to the consultant surgeon before you go for appt. Put your worries to him, and experiences of previous keyhole operations.

Jeannette
 

Mamsgirl

Registered User
Jun 2, 2013
635
0
Melbourne, Australia
Oh turmoil, so sorry the news isn't better. Have to go to my Mum's now and couldn't get a 3G connection from there last night, but will be back later to put my two bob's worth in :). Agree with Jeanette about the letter.
Toni x
 

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