1. Judith M

    Judith M Registered User

    Nov 22, 2004
    3
    London and Edinburgh
    I am a new member and have been browsing for quite a while - it's been so enormously helpful to see that so many others are having to experience the same awful things.

    My 86-year old mother has AD, & lives with my 88-year old dad in London, and I live in Edinburgh. We are planning to move south in the spring, once we have found somewhere else to live. My older brother lives near them, and I visit them as often as i can - mostly every 2-3 weeks over the past year, and staying there with them for 4 or 5 days at a time. I ring themeveryday - I did ring 2 or 3 times a day, but now can maybe only cope with once a day. they have a magical wonderful carer - but only from 9am-2pm, and so no one is there to help my dad when my mum's "sundowning" starts. My younger brother also lives in Edinburgh but he has his own life.

    My last visit was the worst ever and although I came home over 2 weeks ago I still can't stop crying and feeling utterly desolate. My mum was on Aricept for 18months and has been on Ebixa for nearly a year. Things were so bad last time, with her constant anxiety about going home (having lived in the house for over 50 years), finding another house, going home to her father, looking for her husband (although he is with her and has been for over 60 years), that the consultant prescribed Seroquil, an anti-psychotic drug. I was so loathe to start on that slippery slope, but was convinced by the CPN and also by my mum's terrible state of anxiety.

    I guess I would like some advice on how to cope with my own emotions - no one else in the family has been completely overwhelmed like i have - I feel as if I'm maybe carrying the grief and distress for everyone else. Family and friends visit mum and dad and say they were very well and happy and coping, implying that I'm completely over-reacting, and what's wrong with me that I can't be there more for my parents. Of course I'm happy that mum and dad are "OK", but I have experienced the nightmare of sundowning, of trying to support my dad (whose memory is also failing), trying to relieve my mum of her anxiety. On the last visit I had to keep escaping to my room to cry (silently). Now, when I ring them, my mum always answers the phone (and why not - she loves to hear from people!) we have endless repeat conversations about moving and house and homes etc and I find myself giggling - this is the first stage of my hysteria. I have to ring off with some stupid excuse (eg i just sat on the cat! - true actually!) and feel awful about it, with my mum thinking I was laughing at her. Then the flood gates open and I have another howl - one of many during the day.

    Needless to say, I'm becoming increasingly useless as a carer and as support to my dad; I'm hardly sleeping (not helped by hot flushes etc) or eating; and can't get my head round anything else I'm meant to be doing in the day, unless it's some paperwork/phone calls etc on my mum and dad's behalf.
    So, basically I'm feeling a real wreck, and just can't seem to pull myself out of it.

    Any advice would be gratefully received.
    Thank you so much.
    Best wishes
    Judith
     
  2. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Judith,

    I know that overwhelming feeling, it hits me too once in a while, just a million emotions that seem to hit me all at once like a hail storm. Usually on the way home from a long visit. It does sound like you are taking the full burden on your shoulders and not looking after yourself enough. Is there anyone you can lean on for a bit of emotional support for yourself?

    You mention "isn't there anything else I'm meant to be doing". I can answer this question - make sure you have some 'you' time - spoil yourself once in a while if you can. It's very hard to care or worry 24/7 and you will just wear yourself out if you can't take some time out. With Alzheimer's it's particulary hard to feel that you are ever doing enough as a carer. That's my humble opinion.

    This factsheet may help:
    http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Coping_with_caring/info_yourself.htm

    Kindest Regards
    Craig
     
  3. Judith M

    Judith M Registered User

    Nov 22, 2004
    3
    London and Edinburgh
    Hi Craig
    Thanks for your reply. I can take time for myself in that I recently gave up my full-time volunteers' job of running a charity, and now all my time is my own. I guess that could be part of the problem, in that I gave up the job because it was draining me and I knew I needed my energy for dealing with my parents' situation. Now, I can spend all day crying at home if I 'want' to!

    I do have lots of other things I could be doing, but i just can't get motivated. I do have my partner's support but I don't want to test that or push it too far as it's hard for all of us as it is. I guess I just have to make myself somehow get back into finding some kind of separate existence for myself which will support me as well.

    The Info Sheet was helpful too.
    Thanks again
    Judith
     
  4. Chesca

    Chesca Guest

    Dear Judith

    It doesn't come as a surprise to me, that you are depressed, and I really feel for you. What you are trying to do - be all things to all 'men' from one end of the land to the other - is no mean feat. And they are only the practical aspects. The emotional upheaval is something else. At the moment you probably need the time to gather your wits in order to think. You can't sort it out and make major decisions while your head is like a box of frogs. And, don't underestimate the effects of Mistress Menopause - or am I preaching to the already converted?

    I may be being presumptious here, (discretion has never really been much a part of my valour) but do you really want to move south? That must have been a difficult decision to make and to know if it is the right one; sufficient to pile on a little forgiveable resentement, not to mention the stress that is moving home in normal circumstances. And then there is the job you have obviously enjoyed, that made you feel fulfilled - all of sudden what are you? Redundant at the hand of AD! Could you not continue in some part-time capacity once you have taken a little time out. You are very valuable!

    From what you say, Dad is receiving outside support for about five hours each day but not when he needs it most, sundowning time. Could the social workers possibly arrange to split the duty over the day - three hours in the morning, two in the afternoon or could it be they need re-assessing for more support. As for the chemical cosh, never say never. I've been there myself: NEVER was my Mum going to be sedated, wouldn't allow it in a million years....... Mum is now taking a small dose of an anti-psychotic! She was also going into a nursing home over my dead body..........she is now settled in one, although it still makes me cry. The result is that she is more at peace, more receptive to being told that all is well at home (her mother's - she died in 1967!) because I've just left her making apple pie, any old thing, and we can take the time out to love her without the angst occasioned by the repetition and her distress. It helps make an impossible situation just that little more manageable, for everybody.

    Dare I suggest a little medication for yourself in the short-term or is that an Ouch! I reached a point two years ago were the thought of dragging the potato peeler across my throat became a very real alternative and was press-ganged by my partner to the GP who prescribed me something just for a week. It helped. I don't consider it a weakness at all.

    One of the factors that jumps out at me in all of this (apart from the obvious of AD), is that you say your younger brother 'has his own life'. Why do you exempt yourself from this right? Unlike most, I don't accept the excuse that it is because women are more nurturing. There are many men, on here also, valiantly dealing with the onslaught of AD experiencing the same senses of frustration, grief and stress and dealing with it with love and responsibility. You will know better if you are trying to take on everybody's share of the problem - it sounds like it to me, but you can't. You can only do best for you and 'your own life' whilst supporting Mum and Dad to the best of your ability - that's not super best, just your best. And other members of the family have to share that responsibility, however minimal.

    I'm sorry I've rattled on so much, I just feel for you and, having had some of the same decisions to make have made them, learned to live with them, sometimes very badly (allowed), and the whole house of cards is still standing although a little rickety at times.

    Thinking of you with best wishes
    Chesca

    ]
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Judith
    what a marathon feat trying to care for your parents all that distance apart,I admire you for the effort.
    I have cared for my wife for 7 years now and all the emotions are very similar to all carers although we may be travelling different routes.
    Has Social services prepared any assessments for your parents as to their needs?They should .
    Have you tried Crossroads for some one to sit with them?
    You have had some good advice from others on this site,I think as important as any, as Craig says, do take some time for yourself.
    It's taken me years to realise that but I am feeling all the better for the time I am able to have for myself.
    Judith try to live day to day, and remember tomorrow will be better
    Very best wishes
    Norman
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Judith, again our Norm hits the nail on the head, day by day and take a bit of time for yourself to have a life too. All the best, love She. XX
     
  7. City Claire

    City Claire Registered User

    Nov 1, 2004
    36
    Oxford
    Hi Judith

    My heart went out to you when I read your post yesterday. As another relative newcomer to TP I just wanted to say some of the things that some people have said to me: don't be too hard on yourself (you've been offering an amazing level of support from what you've said) and remember if you didn't care you wouldn't be going through all this - your parents are far better off having someone who cares than not, tho' obviously trying to get yourself on a more even keel is really important for you (and them).

    You sound like you have alot of big changes going on what with leaving your work and planning a move (which I would - I hope not too presumptiously too - echo Chesca's thoughts about. I am probably just slightly envious tho', my husband and I would love to live in Edinburgh where his family are, but as I'm an only child I feel duty bound to stay down South for my parents, but we were down here already and I am still 50 miles away and I am an only child so it's a very different situation), and all these trips up and down must be pretty draining in themselves. It's an awful lot to deal with.

    It's really heart-breaking to see a parent or both of them in such distress and I don't think anyone can be expected to cope with that without having some emotional crisis points. Mum soldiered on looking after Dad at home with no support for a long time (we both dreaded 'letting go'), but since Dad had carers to help him get ready in the morning and sitters to let Mum get out/have some time to herself occasionally when he was at home and since he has been in hospital it has made me realize how much it can help to have some practical professional help which allows us to spend time with Dad which isn't all caught up with 'coping'. It does sound like Social Services should be providing some help at the more difficult time for your Dad, as others have said, so perhaps that could be a short-term goal to focus on if you can.

    I'm sorry not to be able to offer more practical advice and to go on so, but I wanted to put something.

    Maybe on the relaxation front you could get some advice on 'calming exercises' - I'm not putting that very well - but my Mum had panic attacks some years back (tho' I know that's not the same) and she found the techniques she was taught helpful. She's also addicted to Lavender oil from what I can tell now (it does seem to have helped her sleeping a little)!

    Thinking of you, be gentle to yourself

    Claire
     

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.