1. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Hi, I was just wondering if anyone has any experience of how to help someone with severe dementia to have a blood test and ultrasound scan. My mum saw the GP today and he thinks she may have ovarian cancer. He is referring her to the hospital for an ultrasound and also wants some bloods taken beforehand. I'm worried that she is not going to let them check her. She is very mobile and didn't agree to have her flu jab last year or her last cholesterol test. I'm probably hoping for the impossible but just wondered if anyone has any advice please.
    Thanks.
     
  2. rajahh

    rajahh Registered User

    Aug 29, 2008
    2,794
    Hertfordshire
    Tobe honest not sure I woukd try to persuade her. If she didnot want a flu jab then why woukd she ever want these tests. Sorry if I sound brutal or cold, but having refused my husband any further tests regarding prostate cancer I just feel severe dementia sufferers woukd go through great trauma to have these investigations
     
  3. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    My late Husband was diagnosed with possible prostate cancer a few months before he died. There was no way that he could have endured any tests. It was confirmed when he had a PM. He died with the cancer not because of it.

    Whatever you decide to do I wish you the very best.

    XX
     
  4. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Thank you both for replying, I hadn't thought about mum not having the tests but it makes sense to me now you've said it. Thank you xx
     
  5. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    One question to ask the professionals - and indeed yourself - is ...if the test for cancer proves positive, what would happen then?

    Would she cope with or, indeed, agree to any treatment suggested? If not, then why investigate and cause unnecessary distress? What is actually in her best interests?

    My mum was going to be referred for tests when carers found a lump in her armpit. She'd already had a mastectomy. However I contacted the gp and asked the questions above and he said he wouldn't recommend treating it as she wouldn't cope. So we decided together that doing nothing was in her best interests. It turned out it must have been a cyst as it went away on its own and she lived another seven years.
     
  6. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Thank you Chemmy. I don't think she would be able to cope with treatment if she does have cancer. I will ask what they feel is in her best interests. Thanks xx
     
  7. KingB

    KingB Registered User

    May 8, 2011
    255
    Berkshire
    Just a thought - but even if she would not tolerate curative treatment is it possible that you have to go through some process in order to access palliative care in due course? We've just been through a long process of scans and hosp appts with mum (she has bowel cancer) and the end result is that she is "in the system" ready for when/if palliative care is needed. We were completely bewildered as to what was going on because we felt it was obvious that surgery was not an option - but it does seem to be the case that we had to go along with the process in order to be officially at the point of "no treatment but palliative care as and when".

    So maybe it is worth taking her to the appointments even if she refuses the blood tests and scans - it might be that you have to go with the flow as best you can (even if she refuses the scans and tests) just so that she is in the system and the appropriate medical staff have been able to assess her. Even if its a case of her being referred to tests which on the day you aren't able to get her to and end up contacting the hospital to explain why.
     
  8. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Thank you King B. I was starting to worry if it does turn out to be cancer and she needs palliative care but hadn't had any tests what the position would be.
    I appreciate you providing a way forward so she can access the care without having to have gone through the tests. Luckily I think mum would cope ok with a visit to the hospital and would even enjoy the short taxi ride, but she would absolutely refuse the tests and that would be obvious very quickly to the medical staff. Also like you say if on the day I couldn't manage to get her there I could ring and explain so at least she is in their system and she is not upset by it all.
    I wish you well with your mum xx
     
  9. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    Ovarian ultrasounds are usually done transvaginally and it sounds very much as if that will be too much for her.

    I'm sure you'll help get to the best decision.
    Best wishes
    Sue:)
     
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Teahound, I'm sorry to hear of your situation. I hope you can find a way forward that works for your and your mum.

    One thought I had was that, surely some of the tests don't require a trip to hospital (which may be upsetting)? I would think that her GP's office could draw blood samples and send them wherever they need to go, or perhaps there is an outpatient lab or clinic associated with the hospital/medical centre.

    Or perhaps he could refer your mother to an OB/GYN and/or oncologist, who could help guide you with what you might or might not do.

    If she does need to go to hospital for tests, or anything else, make sure every staff member you encounter knows about the dementia. I'd also make sure to schedule tests at a time that is not only okay for your mother (not sundowning or too early), but also will minimize the time she will likely have to wait around. My mother (Alzheimer's and no short term memory) does not do waiting well!

    I know that's not very helpful, but it was what I could think of. Very best wishes to you.
     
  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    Maybe you need to ask about possible palliative care too, teahouse. It seems crazily inefficient to have to clog up the system - although I can well believe it's true.
     
  12. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Thanks Sue. Yes, the GP mentioned that yesterday and I said I didn't think there was any way on earth she would allow that and would get way too upset. I don't think it is all possible. He said they might be able to find out something from a scan of her pelvic area from above but it wouldn't be as good and they may have to press quite hard which would be horrible. I can't see her letting them scan that way either xx

    Thank you too Amy. The bloods would be taken in the care home from the district nurse but I can't see this happening, at least like King B says she will be in the system. I think your suggestion of the appointment time at the hospital so it is at a quiet time and not around sundowning will help a lot. I shall ring them when it comes through and make sure it is at an optimal time and will rearrange it if needs be xx
     
  13. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Hi Chemmy, I know what you mean.
    I also called the Alzheimer's helpline today who were very helpful. They put me onto the Admiral Nurses and I'm waiting for a call back so they might be able to give an insight.
    I've just heard back from the Admiral Nurses and they were very good and with everybodys help I feel I've got a way forward.
    I'm going to see if the district nurse can take bloods. I think there is no way but then at least it is noted with minimal upset to mum. I will speak to the nurse or the GP to ask about pain relief for mum before she sees the specialist. It is worth seeing if mum might have the ultrasound on her tummy without being too upset but not pushing it. Also to call ahead and let them know mum has dementia and ideally get an early morning appointment to reduce waiting and not risk sundowning. Then whatever happens with the scan she will have a specialist appointment. I can then ask the specialist what would be normal levels of pain for this if it is ovarian cancer and even if they haven't been able to diagnose could they please provide pain relief accordingly.
    Thank you all so very much!
    I really appreciate everyones help xx
     
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, teahound. Glad you are getting some advice and connected with the Admiral Nurses; I've heard nothing but positives about them here on TP.

    I want to follow up on what Sue said, and apologise if this is too personal and TMI, but I have had trans-vaginal ultrasounds performed. If you want to know from a patient's perspective what that is like, I'm happy to write it here in your thread, or you can PM me if you prefer. (I am not shy but do not want to offend anyone's sensibilities.) Or you can ignore this if you wish; no worries either way.

    Hope you will keep us updated when you know something more and feel up to it. Best wishes.
     
  15. teahound

    teahound Registered User

    Apr 19, 2013
    46
    Hi Amy,
    Thank you that is so sweet of you to message. Please don't apologise, it is very kind of you to offer share what it is like from a patients perspective.
    I hope that you are ok.
    I won't take you up on your offer but not because I think it is too personal and TMI, it's just that I think there is no way that mum will allow it and would get too upset. I very much appreciate the thought though and if there was any chance she would have the test it would be very helpful.
    Mum often gets very upset when having her pads changed by me or carers who know her well and lashes out or tries to run away. So at the most, I think, I'll see how it goes with the pelvic scan, I don't hold out much hope as she was pulling her fleece over her stomach when the GP was tapping it, but I suppose you never know her mood might be different on the appointment day.
    I have asked for her to start having ongoing pain relief so that may help her feel a little better hopefully.
    Thank you so much for your kind offer and best wishes to you xx
     
  16. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Teahound, you are quite welcome and yes, I am all right (how kind of you to enquire). I am glad I didn't offend you with the offer or too much potentially graphic information.

    From what you say about having her pads changed, I would guess a transvaginal ultrasound, or possibly even a manual pelvic exam (which was also performed whenever I had the ultrasounds, but could be different in your case) would be distressing and I'd be unlikely to attempt it. On the other hand, having an official nurse/doctor, who is unknown to her, might make whatever tests or procedures that need to happen, less upsetting for her. Sometimes it's about the relationship, sometimes it's all about the uniform.

    I think the pain relief is an excellent idea.

    I'm sure this is very challenging for you and wish you all the best.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.