I'm new and want to introduce myself

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tilly02, Mar 2, 2008.

  1. Tilly02

    Tilly02 Registered User

    Mar 2, 2008
    2
    Hello, I've read some really moving and helpful messages already so am really pleased I found this site.

    My Mum is as yet undiagnosed but my brother and I feel sure that my Mum is developing dementia. she started to have memory problems about a year ago and so far is managing really well. I get irritated with her and then feel guilty when I've been asked the same question lots of times, or when she phones me or people in her village to find out where we are, even though I've told her what our plans are and have written then on a white board for her - which she forgets to read and then she panics - but reading what everyone else is going through I realise how lucky I am to still have my Mum relatively "with me". I have started the ball rolling with the GP (after a lot of effort to get them to realise that Mum wouldn't make the appointment herself, we got her in on the pretext of me checking her medication for her asthma, as she kept getting mixed up about what she should be taking, and the GP who eventually saw her was very good and introduced the subject of "memory" and "are your family worried about you do you think" to set the ball rolling a bit. She did the "mini-mental" as they call it, but that really tests long-term memory which she is good on, so the next appointment will be to hopefully gently check her short term memory. Maybe from there we can tackle what help Mum needs now (drugs?) and plan for the future a bit.)

    I suppose my worries and guilt are to do with grieving for the life I thought I was going to have for the next few years and realising that, as I am on hand and closest in location to my Mum, I am going to be her main carer. At present I resent this so much! As a single Mum of an 11 year old, i see any chance of meeting new people and having "me" time disappearing. I resent the fact that I'm on hand and am therefore expected to do everything. I hate the way people in the family ring and say "have you done this or that" and then, even though some suggestions are being taken care of or not appropriate, i still feel quilty. I have an aunt who is stirring up resent ment (in me!) by commenting to others that I'm not doing my mum's cleaning or taking her out very much. I feel guilty that I do not do very much for my mum, but on the other hand, her house is spick and span and mine is a mess!! If there's one thing she's not neglecting, it's her house.

    All this is meant to illustrate the "poor me" stage I'm going through so I really do not want or expect any sympathy for this BUT just hope someone can reassure me that they have gone through this stage. It does nothing for my self respect to admit that I'm not being a very good daughter at present and am acting like a spoilt brat, I feel! My Mum has done so much for me over the years, is very undemanding, hates to "put on" me, and, if she had any insight into her problem, would I'm quite sure tell me to look after myself and my family.

    Sorry that this is a rambling stream of consciousness. I haven't covered half the things that are running through my head and hope that, having read more of you messages, I'll start to get a grip and be morepractical and accepting or what our future will be.

    thanks for taking the time to read this anyway.

    and good luck with all your hard work and support you give to your loved ones. XX
     
  2. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Dear Tilly,

    Nice to meet you on TP. What you are feeling is felt by so many people on TP. I think resentment is so common, I felt it with my Mum, and yes, certain members of my family are very quick to criticise too. But when they criticise, ask them what they suggest and you can be sure they don't have any replies to that. What you lack in support from family you will receive many times over from TP friends, we've all been there and can honestly say we know how you feel.

    Do try and take some "me time", however short and never feel guilty about it. I'm sure you are doing your best.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,550
    Kent
    Dear Tilly,

    Please believe me when I tell you that any emotion you are feeling is acceptable. You are trying to get to grips with the possiblilty of your mother having dementia. It is an extremely frightening prospect.

    So when you are asked by `well meaning` family members if you have done this, that or the other, I`m afraid I would tell them you haven`t had time, but if they would be prepared to do it you will be very grateful.

    And I would phone your aunt and ask her help in cleaning for your mother and perhaps taking her out.

    You know what you can offer in the way of help and I`m sure you will do your best. If your mother grows to need more help than you can give, you find out what help is available from Social Serices and other organizations and make the best use of it.

    You will get a lot of support from TP as we all know what`s involved. Hold you head up, do your best and don`t be made to feel guilty by the critics. They have no right to criticize you.

    Take care xx
     
  4. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Dear Tilly,
    You are at the stage I was at with my Dad about three years ago, and where I am with my Mum now. However I have no brothers or sisters to have a hassle with - there's just me. I am new-ish to this site too, and have found it a huge help in the past couple of weeks. At first you tend to think that you are the only one who is going through this awful thing, and it helps so much to know you are not. There always seems to be someone out there with an answer or advice.
    Best wishes.
     
  5. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    Dear Tilly.
    Us women are terrible at piling the guilt on ourselves. I bet your brother doesn't worry whether he does enough. You have spent the last I don't know how many years caring for a child on your own & now they are growing up a bit you hope you might meet someone, start going out & having a bit of fun. Being a carer again for a parent wasn't in your plans, please don't feel guilty about wanting a life for yourself. Give as much as you are able for your Mum & make sure she has what she needs but please don't beat yourself up over things you aren't doing. She has you & you care & will make sure she is alright. If she is still capable of keeping her house clean & tidy (unusual) let her keep on doing it no need to interfere.
     
  6. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear Tilly,i call my closest friends Tilly.Tilly flops mi best mate.I feel your going about this in the right way.With dad,i did a similar thing,wrote to gp and expressed concerns of his deterioration.he was called in for his routine b12 injection and the gp did an initial assesment and referred him to the memory clinic.i cannot fault their quick response and diagnosis.
    love elainex
     
  7. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hello Tilly and welcome to TP,

    Always sorry to hear of another dementia sufferer a truly miserable disease.

    Family suffer so much as well and if family member used their energy to chip in constructively it would make for a better outcome.

    You'll experience many different emotions over this journey emotions that would also have being shared many times over.

    Speaking from my own experience here on TP I'm sure you'll find

    no judgement here only support and that support will be a blessing.

    Caring Thoughts, Love Taffy.
     
  8. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    I am another that remembers being where you are now. I still have the same feelings going on now, you will stretch yourself above and beyond along the way but be careful not to neglect yourself too.

    You'll find alot of support here, I have often found great release just having a place I can write down what I think or has gone on, somehow empties my head a little bit.

    Scott
     
  9. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi Tilly
    Well done for finding TP and making your first post. Its a great support for people looking after loved ones affected by dementia. I've only just discovered it after 5 years of caring for Dad ! better late than never. I remember at first some people(not that many) tried to come up with 'helpful hints' but its a short cut way of giving no practical help.I totally agree with Grannie G on her advice. Just do what you can. The difficult bit, I have found, is having to decide who gets priority Dad or the children. There's no hard and fast rule I just make it up as I go along and hope I get it partly right. No matter what try to look after yourself!!
    kind regards
    hendy
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Tilly

    Well you said you didn't want sympathy, but I am giving it to you, cos I think you deserve it, and why not?

    That's all I want to say!

    Much love

    Margaret
     
  11. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear Tilly,
    Another welcome to TP from me! I understand EXACTLY how you feel and I'm sure just about everyone else on TP does too.

    We love our parents dearly and would do anything for them, but we deserve a life of our own too.

    Those who make suggestions about what YOU should do, or criticise what you ARE doing, are inevitably those doing virtually NOTHING themselves!! Anyone actively involved in supporting a person with dementia will recognise the huge load it involves, and NOT go making suggestions or criticising.

    I totally agree with Sylvia's statement above.

    I would go even further (altho' I realise you may not think this is appropriate) and tell anyone who criticises you that, if they can do a better job, you'll be happy to hand over to them! No dooubt this will bring remarks of you being "touchy" or "sensitive" but it might shut them up!! :)

    The next few months will be the most dificult in some ways, as you (and your Mum) come to terms with her needs. As you set up systems of support for her (whether by you, other family or external services) it will gradually be more manageable. If your Mum is in complete denial about her illness (which is sadly very common) it will make this stage more difficult.

    But DO persist - for her sake and your own. And do take "me time" - it is not selfish - it is essential. Without it you will not cope with the journey ahead.

    We are all reluctant travellers on this journey, and we wish for your sake that you did not have to join us. But we welcome you and hope you will find support here on TP. Every best wish for the coming months.
     
  12. Tilly02

    Tilly02 Registered User

    Mar 2, 2008
    2
    Wow, you're all so lovely!

    gosh, what an amazing site this is!

    Having just had another melt down, where I feel so ashamed of how I've spoken to my Mum (why can't I be more patient and nicer to her?) I've sat down to check this site and found so many lovely words of kindness and support.

    My poor 11 year old has to witness me handling this so badly at the moment and then crying because I feel so ashamed. she's far more mature than me but shouldn't have to be. I really do need to get a grip. I know we all have good and bad days so I'm going to try to make a conscious effort to take a deep breath when I can feel the irritation rising. Poor Mum - she can't help it after all.Is it because I'm still fighting for her to be how she was? a sort of "come on mum, you do know this" or "you can do this"?

    And the thing that I realise is that, I'm irritating too - self revelation or what! My mum has every right to remind me of that fact. The other day, after I'd said yet again, "Mum I told you that" she said, "you seem to take pleasure in telling me I've got a bad memory". It really stopped me in my tracks. I know the opposite is true, but I suppose this shows how much I want her to have insight into her problems, and it also shows how inappropriate I'm being in reminding her all the time of the thing she can't help! How cruel I'm being.

    Now I feel that you might read this and think I'm being hard on myself (or not!!). If you are, please be assured that I will really try take on board what you have said, all of you have been so kind. I know no-ones perfect, we're all only human and that means that sometimes we're nice to our loved ones and sometimes we're really horrid. What makes it different with people with this condition I feel is that it feels so wrong because they are so vulnerable. that's why when my mum snapped back, it hit home. Good for her.

    It's the same with children. My lovely daughter has always been so easy, compliant, wanting to please - and is now going through a bit of a stroppy phase (as she says, it's not me it's my hormones!). But as she rightly said the other day, "I'm learning to stick up for myself" and it's true. She needs to assert her rights and not just "do as she's told".
    I could learn a lot from her. Seems such a shame that she's having to see me melt down at the moment.

    I won't take up more of your time here, even though it is really helpful to "work things through" when I write. thank you all so much for your really supportive messages and advice - from people who are I'm sure going through a much more challenging time than me. I hope I'll develop the wisdom and strength you've shown, I'd like to think I'll be able to send messages to others that will be helpful in the future. I'm not there yet!

    Lots of love and luck to you all and to your loved ones. xx
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Oh my goodness Tilly - I could have written what you just wrote.

    I think you're correct - it's exceptionally hard to come to terms with the fact that someone can't do something particularly if they have always been capable. I'm not sure that I ever completely came to terms with my mother's deficits: she occasionally had flashes where she seemed almost as she was before she became ill. Because of that, I did have to consciously remember that she couldn't do stuff, and sometimes I'm ashamed to say that that my memory failed. There were also occasions where she said "don't keep going on at me Jenny": I have to say your post brought it all back.

    No real words of wisdom: just wanted to reassure you that you're not the only one.
     
  14. Philippa

    Philippa Registered User

    Feb 26, 2008
    41
    Essex
    My daughter always called it her 'horrormones'. Quite appropriate sometimes!

    Don't feel bad about ranting. We all feel the same. My story is that I absolutely knew something was wrong with Dad but had my head in the sand. Even a brain scan showing disease didn't convince me. I had a hell of a time accepting it. Now I find I'm in a different state and I tell absolutely everyone I meet. I'm positively boring about it.

    Keep posting, Tilly. There are lots of us out there who know exactly how you feel.

    Philippa xx
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,550
    Kent
    Dear Tilly,

    Your mother probably has more insight into her condition than you have realized. By saying to you,
    she is showing she has some idea what`s wrong.

    I remember reducing my husband to tears once by saying `This is the 20th time you have asked me that`, and he said he hadn`t realized. So please don`t think I`m criticising, I`ve learnt from experience just as you will.

    Don`t expect perfection from yourself. We learn as we go and none of us know all the answers or how to react in the right manner all the time.

    Learning to live with dementia is a very steep learning curve.

    Love xx
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    My children also witness me handling it badly , me crying all the time in front of them more so because of the frustrated of it all .

    My youngest was 15 at the time, it just show are children that we are only human , with human emotion , showing are kids its good to cry and still be able to pick ourselves up again and keep on going on
    your right you will develop * more * strengths, because I have develop strengths that I thought I had lost , back in those days when my mother was at your mother stage , I felt I had not strength but its always still in you . just with all the stress it just make you feel so down.
     

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