1. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    My husband is in a care home with advanced Fronto Temporal Dementia. He was diagnosed in 2007 and in 2012 was diagnosed with prostate cancer. The prostate cancer appears to be under control
    and he is physically fit at the age of 77 years apart from now being overweight. This week he was diagnosed with a large primary ulcerated tumour in his rectum. The thought of treatment such as chemo ,radiotherapy an operation or maybe a colostomy fills me with dread as he his cognition is very poor and he has lost the speech to express himself. I am seeing the Consultant on Tuesday for the staging of his cancer.I would be interested to hear from anyone else who has experienced a similar situation.I am very worried about the future.
     
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    What a ghastly situation for you. I hope you get proper and full advice about how to cope with this for both your sakes.
     
  3. #3 DazeInOurLives, May 10, 2015
    Last edited: May 10, 2015

    Whew, so sorry to read this. What a huge additional worry and sadness to have discovered this.

    I expect the consultant will already have some thoughts about what s/he is prepared to offer actually, which may be helpful. I don't think that there will be an automatic expectation to radically treat this if it is not in your husband's best interests. There is likely to be an option for this to be managed totally palliatively and referrals would be made to community palliative care services to support him, you and the care home staff over the coming months.

    In the unlikely event that the consultant does not make any clear recommendations, depending on your feelings about this and any conversations you may have had with your husband when he was well, you'll need to consider what is best for him here, given his current cognition and reduced communication and his ability to cope with potentially radical surgery and/or other treatments.

    It really does needs a frank conversation with his consultant +/- his Macmillan nurse about exactly what is reasonable, appropriate and practically manageable and what the bottom-line goals for your husband's short, medium and longer term well being are.

    This won't be an easy conversation to have and it would be good to have talked it through with those close to you both and to have someone very supportive with you.

    Take care,
    Daze
     
  4. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    Thank you for your comments and support. Loads to think about and contact with a Macmillan nurse a good idea. X
     
  5. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    Now have seen Surgeon who doesnt know much about dementia. The growth in the rectum is large but contained. He has suggested a total resection of bowel that might end up with a temporary colostomy. The operation is at least 4 hours long and my husband will be in Hospital for between 7 - 10 days. He is a happy 77 year old man with advanced FTD. His cognition is extremely poor as well as his communication. There is a risk his dementia will worsen following the operation.The cancer hasnt spread as yet and his symptoms are manageable .The alternative is to wait and put a stent in should the rectum become blocked. Of course the cancer will inevitably spread but this may not be for a few years.I am not sure how he would cope with such a big operation .... the quality of his life is paramount and all I want is the best for him.I feel that we should have a multi disciplinary team meeting to discuss his "best interests" I would be grateful for comments as I feel so stressed about it all.
     
  6. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Carole, you may find that once he's in hospital, and they've managed to see his total condition for a few days, there will be a team of people dedicated to helping you talk through all the options. It wasn't until our latest hospital crisis that we got exactly that.

    Outside of hospital, I never got heard about anything. Once my hubby was admitted, and after his operation, suddenly, a team of people were onto us and we've been given the support I've been desperate for, for years.

    It's desperate for us that we have to wait for a crisis before we get support, but at least, you can't be rejected for help once they've seen for themselves what you're living with. Remain interested, ask questions where necessary, and I truly hope you'll get a proper and satisfactory outcome. I wish you and your hubby every blessing at this distressing time.
     
  7. #7 DazeInOurLives, May 14, 2015
    Last edited: May 14, 2015
    Oh Carol,

    I am really concerned to read that the consultant may not be looking at the whole picture here. Did he mention your husband's quality of life or the consideration of a palliative approach?

    I am sensing that you would rather go for the option to wait and see for now. Do the rest of the family agree? I personally think this would be an entirely reasonable option. If you do not feel confident to decide this on his behalf outright, then requesting a multidisciplinary team meeting to discuss his best interests would be optimal here. To decide either option would be quite a burden potentially for one person and definitely best collectively agreed upon. But this is the NHS and a meeting may not happen easily. If a meeting cannot be arranged, I would contact his dementia team and discuss it with them separately. Also his GP, if s/he knows your husband well.

    As you say your husband is happy and physically well with his advanced dementia and his bowel symptoms are currently very manageable and have not spread. This to me is key information. They could be interpreted either as a reason to hold off, or, but to someone not considering the potential consequences to his mental state, this could be thought of as a reason to proceed now. A 4 hour anaesthetic is far from trivial. There has been much discussion about the possibility that anesthetic agents may have neurodegenerative complications in some people and there is more research to be done.

    However, something brought about the investigation in the first place...what symptoms alerted you to a problem? Were they problematic for your husband, or just something observed when he opened his bowels? If the surgery went ahead and went well, might he be in a significantly better observable physical condition compared with now? Or is it not so much about symptom control but about trying to prevent the spread of his disease, which, if it occurs could be very difficult to manage and could involve leakage of bowel contents from more than one place. This is probably what the surgeon has in mind.

    However, remember that the surgeon would have absolutely no part in his day to day care and recovery. It sounds as though the practical consequences may not be something he is fully considering. What is certain is that surgery of this kind would be a tremendous challenge even for a well person, with a long recovery time, particularly if there is a temporary colostomy (easily within hands' reach; colostomies and dementia are a dangerous combination).

    How well would the care home staff cope, if a temporary colostomy ended up permanent? Is there a risk that they may feel that they cannot cope and may suggest moving him? How anyone with advanced dementia would cope with it all is impossible to say...if he does not recall his diagnosis then he may not have the adverse effects of anxiety about this new diagnosis, which would be to his advantage, but he would almost certainly be aware that something dramatic and unpleasant was occurring. Does he accept close-up personal care readily? If the answer is already no, then I cannot see how this surgery could ever be realistically considered.

    Whatever happens, don't allow yourself to be rushed into any decisions and try to include as many people as possible in the final decision. If everything is still in balance, go with your heart.

    With warmest wishes,

    Daze
     
  8. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    Thank you again for comments and wise thoughts. You are right Daze, as deep down I want to "wait and see". He is very happy in the care home and I would rather he was able to live a few more happy years than find he has 6 months taken from his life recovering from such a serious operation , that he may be left with worse cognition, worsening dementia and with no guarantee that the cancer hasnt spread already. Although he is quite compliant, he doesnt take kindly to close personal care other than from myself which as you say is another consideration. His care home is not a nursing home and they have said they would try and cope if he had a colostomy but to move him when he is aware of his surroundings would be devastating. I will meet with the Geriatrician who should be hopefully up to date on the dementia aspect. I feel I cant make the decision on my own so views from other professionals will be helpful in deciding " best interests" x
     
  9. Oh Carol,

    there is so much at stake here, and such sad decisions. Take care, keep us posted and send me an off list message if you'd like to.

    With warmest wishes,

    Daze
     
  10. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    We have now seen a Psychiatrist who specializes in dementia. He assessed my husband and agreed that his FTD was now severe and that he would find it very difficult to cope with such a major operation together with an ileostomy for possibly 6 months. He said that he had seen people with dementia deteriorate significantly following such a major event . I know at the end of the day it is quality not quantity of life that is so important. In my heart I know that palliative care is the kindess option. It has been the most difficult decision I have ever had to make but hopefully with support from my partner (I have been so lucky to meet someone who understands dementia as his wife is in end stage Alzheimers), the wonderful carers. at my husbands care home, the Macmillan nurses from our local hospice and the GP practice, I will have the strength to cope with what lies ahead. It is going to be mega stressful but I want to ensure that my husband's life remains as full and as happy for as long as it can be.
     
  11. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    I have been reading your posts, what a very hard decision you have had to make, l feel so much for you, you have made the right decision l would not put my hubby through such an operation. Pleased you have lots of support at this difficult time.
     
  12. Carol,

    I am very relieved for you all. It seemed to be the obvious decision with the situation you presented, but not my decision to make. It is sad and bewildering when a person with advanced dementia is offered life-prolonging treatment for another disease.

    I wish you all strength and happiness for the future, whatever happens. I'm sure you won't regret this decision. So glad you have someone to support you who really understands.

    With warmest wishes,

    Daze
     
  13. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    Thank you Daze for your reply and support. I just hope other care givers have the strength to challenge the medical profession when they want to perform such a major operation on someone with advanced dementia. A very difficult and sad time lies ahead but hopefully the palliative care will be excellent as well as the pain control .I do feel this is the right decision and it hasnt been made without extensive research and advice from Admiral nurses and other professionals.Kind regards Carol x
     
  14. caroltheobald

    caroltheobald Registered User

    Jan 16, 2009
    7
    surrey
    I meant to say thanks too to Pamann today for your kind and reassuring words.x
     
  15. sheila55

    sheila55 Registered User

    Feb 6, 2014
    52
    Carol we are in a similar situation. Mum is in an EMI unit with advanced vascular dementia. She also has a very large unexplained mass in her abdomen. She has lost about three stone in weight this year. After discussions with her GP, who sees her every week and does not think she is in any pain, we have decided not to have any investigation or treatment done. Luckily she is in a home which is EMI/nursing so will not have to move. Thinking about you as I know how difficult these decisions are. Take care. x
     

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