Help! I need some advice

Discussion in 'ARCHIVE FORUM: Support discussions' started by Patchouli, Jan 27, 2006.

  1. Patchouli

    Patchouli Registered User

    Aug 28, 2003
    Fleet, Hampshire
    Hi – My name is Pauline and this is the first time I have posted. I’m not sure where to start so it might be a bit of a ramble but I just need a listening ear and advice please.

    I am only child and my 85 year old mother lives in Yorkshire and I live over 200 miles away in NE Hampshire. Mum has dementia (no-one has ever actually said she has Alzheimers) and has been on 4mg Reminyl for around 2½ years. She lives alone in a warden assisted flat and the warden is brilliant, helpful beyond the call of her duty. Mum also has a boyfriend, Les, living in the same flats who is a wonderful help to her. Apart from them she has no help and no contact with any agencies. I spoke to Social Services when she came out of hospital in early December following an emergency operation for a ruptured ulcer but because she is still coping with everyday life they see no need to do an assessment.

    Until last September I was visiting every few weeks and always going up for hospital appointments etc. Then I was diagnosed with advanced ovarian cancer, had an operation and started chemo. I was told I that 6 chemo sessions should mop up any remaining cancer cells and I would, hopefully, be in remission. Unfortunately, after 5 sessions the cancer has become resistant to one of the drugs and my oncologist is going to use another one. No guarantee that it will be successful.

    On the advice of various people I have never told Mum I have cancer, although she knows about the operation and that I am having follow up treatment. I even mentioned chemotherapy but it didn’t appear to have any significance. I have visited her twice since my operation, but had not intended going again until after my treatment which should have finished in February.

    Now that is going on longer than that and with no guarantee of success at the end I am getting in a state about what to do. Should I tell Mum. If so, when and how. How am I going to cope with visiting if I become more ill. What will she do if I die. I have 2 sons, who I know will look after her, but they live in Devon and Bristol. She has a brother who lives reasonably close and who visits her but he has problems of his own.

    I was hoping to go up next week to take her to her appointment at the memory clinic and was going to ask if her Reminyl dose could be increased but because I’m feeling worried, frightened and anxious about myself I’m not sure if I will cope. Les would take her instead of me but he is a bit deaf and doesn't always hear properly, doesn't like the doctor anyway.

    Sorry I’ve gone on. I’m tired after another sleepless night. If anyone’s got this far I’d be grateful for any advice.
  2. maggier

    maggier Registered User

    Jan 9, 2006
    Hi there

    So sorry to hear your particular story. I know I am not qualified to give advice but I know from experience that there are many on this site who can and will give you great help and advice, but in my experience, the first thing I would do would be to contact Social Services as in our case they have been a great help and responded very quickly. I know they will come in to the home and assist where necessary.

    I am sure there must be someone who can attend appointments with your mum etc although I myself do not know who to contact in these circumstances. Again, I am sure it is only a matter of time before someone else on this site gives the information you need.

    Keep posting on this site as I am sure it will be a great help to you and that most of the information and advice given is from really caring, kind, considerate people.

    Take care of yourself,

    Love and big hugs

    Maggie x x
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex

    You really have a lot to cope with and I probably can't help much other than to offer support to you.

    As you are battling to regain your health and as your Mum seems ok at the moment, it may be better for you to concentrate on yourself for the next few weeks, as worrying about others is not going to help your recovery.

    As your Mum has the support of her boyfriend, brother and your sons, let them take over for a while, you need time for yourself.

    On the question of telling your Mum about your illness, I can only comment on my own Mum's situation. Dad and Mum had been married for 54 years and he was her full time carer, he collapsed suddenly and died two weeks later. We told Mum he was very ill in hospital, but she seemed detached and has never asked about him in the months since, a blessing that she was spared the grief she would have had to go through.

    This has not been a very helpful reply, but I am sure others will have support and advice for you.

    Keep fighting and stay postive

  4. Patchouli

    Patchouli Registered User

    Aug 28, 2003
    Fleet, Hampshire

    Thank you for your advice. Social Services have always been very helpful when I have spoken to them but have always taken the attitude that because Mum copes so well there's no need for an assessment. To be fair to them they have said to contact again if there is a change in circumstances. Mum still shops (albeit a bit haphazardly sometimes) keeps herself and her flat clean, does the washing and ironing, collects her pension. I guess it's more the emotional support, which is what I provide - though mostly, and especially at the moment, long distance, that she needs.

    Thanks again.

  5. Patchouli

    Patchouli Registered User

    Aug 28, 2003
    Fleet, Hampshire

    Thank you, what you have said is what everyone has been saying to me from the beginning and has been advice that I have followed. It seems so long since I saw Mum and I suppose I started worrying that it might be a long time before I get to see her again. Admittedly, she keeps telling me she is OK and coping and not to worry about visiting. I'll have another think about whether to go up next week or not. My sons would be very willing to help, and one of them travelled from Devon to Hampshire to collect me and then up to Yorkshire to my Mum when she was in hospital, but they live as far away from her as I do.

    I've noticed Mum is starting to get a bit detached about things. It's a bit disconcerting because she always sounds so bright and cheerful on the phone and yet you know that you're not really having a proper conversation. Still, it's good that is cheerful and is coping - most of the time.

    Onwards and upwards. Am now going to go and pot up some primulas and look forward to enjoying them.

  6. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    Dear Pauline
    gosh you do have a lot on your plate righ now. I am not qualified either to given any medical or I guess even sound advise but from a personal point of view I just wanted to say the following.
    I think if you are really worriying about whether to tell your mum or not and this is causing you some anxiety then it perhaps may be a good idea to go and see her before you start another session of chemo. That is if you feel up to it, which I know is easier said then done. From the way you describe your mums situation she seems to have quite a few people looking out for her, so on a day to day basis I dont think this should be a worry to you just now. If anything I think you should feel assured that if anything happened to her someone would help out straight away.
    I think a visit to her would aslo allow to maybe tell her that you may not be able to come up at all in the next couple of months while you have some tests ( thats if you dont want to tell her the truth) but that you are there in spirit.
    I know this may sound bad but depending on how good or bad your mums short term memory is she may not remember you telling her any sort medical news or detail but I think it may be a comfort to you to see her so that you dont feel guilty ( not saying you do ) and than you can start you next session of chemo with a clear mind and a strong willpower to concentrate on yourself and fight the disease.
    I am sorry if none of the above makes sense but here is a link to a website of a website that focuses on not the medical side but more what you can do nutritionally to help fight the disease.
    Its written by a lady who had cancer twice.
    Stay strong and will be thinking of you.
  7. Patchouli

    Patchouli Registered User

    Aug 28, 2003
    Fleet, Hampshire
    Thank you Dawn for your helpful reply. I have decided I will go and see Mum next week and take her to her memory clinic appointment. I shall feel much happier going with her myself and being able to talk to the doctor. I'm wondering if he will agree to increasing her dose of Reminyl. Her MME score has never been lower than 23 and he said he would prefer not to increase her medication unless/until she gets to 20 or beow. Whether it would help anyway I don't know. I just know how frustrated Mum gets when she can't remember things.

    Yes, I do feel guilty - guilty that I live so far away and can't be of day to day help, except on the phone. But, then, it was Mum's decision 10 years ago when her mother died to stay in Yorkshire and not move closer to me as she had always intended. She said there was no hurry but then she met Les, fell in love and the rest is history. I also feel guilty about Les doing so much for her. He never complains but I know that her memory problems do get to him sometimes.

    Thanks too for the website link, it's very interesting. I am making changes in diet and my outlook and am feeling pretty positive most of the time.

    All the best to you and your situation.


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