Looking after Ourselves....

Discussion in 'Middle - later stages of dementia' started by HEC, May 4, 2015.

  1. HEC

    HEC Registered User

    Jun 16, 2012
    Launceston, Cornwall
    Hi! I've been 'on the edge' of talking point for a long while now - I read with interest many posts and frequently seek for information regarding the bigger - and smaller - little things that I've needed to find out - it has been amazing and I concur with many regarding the support I find here, mainly just through reading. I haven't posted as I mainly read whilst on the move, on my phone and therefore not as easy to type - but thank you, wholeheartedly for all everyone offers everyone else on here - it is an immense sources of strength, particularly in the wee night hours!

    I introduced myself briefly, I see in 2012, just after mum was diagnosed. Mum is now 70 on Tuesday week and has Alzheimer's. We have trodden the road of care at home for as long as we could - and when my dad and myself finally couldn't juggle the balls any longer - we found the most beautiful and amazing home we could locally and are so pleased with how mum has settled and how she is looked after - we are truly very lucky people to have found where we did - and the care she receives is amazing.

    There have been teething problems, of course she tries to escape regularly (it is not a secure unit although she now has a 1:1 carer for much of her waking hours whilst they fully assess her). She has been there for nearly three months now and I count my blessings truly when I visit It I like a home from home and the staff have become 'family' to dad and myself.

    My reason for coming on tonight really was to ask of people, how do you look after yourselves? Not necessarily in the practical/self care types of ways - I have good friends and I have lots of opportunity to socialise when I want it (clearly not a lot around two primary aged children, a husband and a full time job of my own in social services) - but I can get 'away' from the secondary caring role so to speak. In finding the 'right' place for mum I felt no guilt - I knew we had done as much as we could, for as long as we could and had we carried on, I would have probably lost my dad to 'caring' - he is older than mum.

    Mum, I know, would have told us it was 'OK' and I have (thankfully) no guilt about what we have done or why. We still have three or four visits a week (it is an hour's round trip away but we were happy with that to get the best care).
    What I struggle with is the feeling that I am being bereaved - I have lost my 'mum', my dear mama. My kids have lost their 'nanny' and perhaps worst of all my dad has lost his soul mate of 45 years. I feel so desperately sad a lot of the time. I have dreams about her funeral (not horrible ones, but I am just constantly at it!). I cry probably twice most days - but due to circumstance - my eldest daughter is Aspergic and doesn't deal with change well (another reason we had to move mum before things became to bad), I feel I have to 'hide' my emotions most of the time. Never having been a family to express them much before, my dad doesn't chat much either about 'feelings', only practicalities! I feel some days I should go get a counsellor and chat things thru - I tried thru my GP but days and times were so restrictive it interfered too significantly with me either working, seeing mum or caring for the kids, no matter when they said they could see me! (not many anti-social hours appointments that I could make). I have lots of good friends to chat with (I really am very lucky) but I cannot get over this overwhelming feeling of deep sadness. I think to myself, this could be five, ten years - who knows - but mum is physically fit and healthy - other than the fact she is losing weight very fast. I cry almost non-stop when on my own - in the car, in the shower, in the house doing housework. I don't 'expect' this to lessen - I know it is something my head needs to process - but I find it very hard to believe that this can be my 'normal' life on-going - as I have so much I yet want to do with mum - and so many other aspects of my life that need me to be able to function as a 'normal' person. I don't want friends to dread meeting up with me if all I can talk about is mum - but we were so close - and it is such a hard felt loss.
    How do you guys put your 'sadness' on hold? And, most of the time, learn to enjoy the positive moments we do have? I'd just be interested......x
  2. creativesarah

    creativesarah Registered User

    my personal mantra is 'Don't curse the Darkness - Light a candle'

    I try to be positive and do the little things I can do rather than concentrate on what I can't do

    Don't know if this is of any help but my thoughts are with you

  3. Anotherdamnlol

    Anotherdamnlol Registered User

    May 2, 2015
    Maybe go to GP and get some antidepressants? They can truly help you get out of an emotional rut and help change Your perspective. Nothing to be ashamed of, you have shown strength by asking for advice, now consider the advice. Doesn't have to be forever just long enough to help change your thought patterns.
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hi Hec
    My mum is now in a care home too.
    It sounds like you have been incredibly busy, caring for your mum, supporting your dad, supporting your daughter and working too! I dont suppose you had time to think about much more than getting through the day.

    Now mum is in a care home and you have a bit more time I suspect that its all hit you.
    Yes, the sadness of accepting that you have "lost" the mum you knew (she is still in there, but much harder to see) is indeed much like a bereavement. I have found the anger (not at mum - the disease that has put me in this situation) and the fear shocking and difficult to own up to. It is all too much too quickly.

    Find a safe place where you wont upset your daughter and let the tears come - it is natural and healing. And yes, antidepressants may have their place to get you through this period.
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello HEC

    It`s impossible to put the sadness `on hold`, you just learn to live with it, live in the moment, enjoy pockets of pleasure and happiness and take the best care of yourself as possible.

    I found and still find impatience with trivia, intolerance with what I call empty chat and yet there are still moments in my life when I`m part of it .

    Whatever you do and however you live , dementia is still the elephant in the room and cannot be ignored. It is part of our lives but we should try not to let it take over.

    All we can do is our best .
  6. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    Thanks Sarah I found your personal mantra very helpful to me a this stage of our journey.
  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I agree with Sylvia that you just have to live with the sadness.
    Maybe it's different being a spouse but to be honest, I found that looking after someone, which alters but doesn't stop when they go into a home, made me concentrate on the here and now as I was constantly thinking of my husband's needs.

    You say your Dad doesn't talk about feelings, only practicalities and I didn't either, not to my daughters anyway, just on TP. He is dealing with things as I did and it his his way of coping. We all felt sad but I think that getting on with life as it is can be the only way forward.

    You are fortunate to have lovely friends. That is so good. I found that most friends faded away and I hope that is not happening to your father. We get so bound up with our caring that there is little time for socialising and once a care or nursing home becomes a reality, the visiting takes over. Dementia rules our lives and that pervading sense of sadness remains no matter what we are doing.

    I too, could hold a casual passing conversation regarding nothing at all whilst all the time not really paying much attention to the words. I found that most people who have no experience of dementia don't want to talk about it and, beyond an occasional polite enquiry about my husband which I answered as briefly and generally as possible with a 'As well as can be expected' type of answer, the subject was glossed over. They really didn't want to know the truth and I would have found it too upsetting and, in a way, betraying my husband, to tell it as it was. The very few friends who remained throughout were my rock and even they didn't ever hear the full story. Only on TP could I let things out.

    I hope you can find a way of enjoying some moments with your mother which can remind you of the person she was. She is still there underneath and you will be able to see her at odd times. Do keep talking to your children about her and look at photographs too if you can bear it, so they don't forget their Nana as she was. I understand your concern about your daughter as I have a 13 years old grandson with Asperger's.
    Perhaps making a Memory book of your mother's life, with photos and information might be a therapeutic thing to do for you and your children together. I cried buckets when I made one for my husband but I think it helped to focus on the positives of my husband's life and it might help your children to see that this is just another step amongst many that your mother has trodden in her life.

    Lastly, do keep coming back here as it's a great place to offload your worries and your sadness. Best wishes. x
  8. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    when I had my break down last year, my doctor asked if I wanted some antidepressants, I said no, I went back to basics and did me stuff....gardening....writing...walking...........but I still have B to look after, it was as if I sat looking at the sea, I have seen the future........but dealing with RL now.
  9. saucepan

    saucepan Registered User

    Jul 30, 2014
    I am so sorry to hear about your intense sadness, and I can totally relate to it. I have been grieving for my Dad for over a year now, as this cruel disease has robbed me of my Dad that I have always looked up to and admired. I have found it very difficult to get my head around the grieving when he is still alive. I have cried and cried and sobbed late at night and felt awful for such a long time. We have now sold his house and sorted the few bits that my sister and I want to keep. I worry about the funeral as once that is gone that really is it. Most people would then have to sort out the house and all possesions, for me it is just all the wrong way round.

    Things have got easier for me and I hope they will for you soon too. TP has certainly helped me, it's all about talking to people who are dealing with a loved one with dementia as they understand. I have got some great friends who have really been there for me, but I got to the point where I didn't feel it was fair of me to unload on to them. I decided to go for some councelling. Paid for privately but at a time convenient to me, after work. I have been for 9 weeks and never wanted to go on a long term basis. This has been a great investment and if you possibly can afford it then spend some money on yourself, you deserve it. If you can't afford it, there are places that offer subsidied councelling, based on your income, perhaps you could contact somewhere that runs councelling courses to see if their students offer their services?

    Getting outside to enjoy some fresh air, excersise, sunshine always makes me feel better. If you can get away for a few days and have a complete change of scene I think that might really help too. Also, feeling the other emotions, like anger and screaming out loud when you are driving alone in the car is a good thing.

    Am thinking of you and sending you a big virtual hug. Take care.
  10. Quilty

    Quilty Registered User

    Aug 28, 2014
    If you need to talk have you considered the samaritans? In my darkest days i have phoned them. I needed someone who would listen but not be involved or expect more. It was a lifeline. Dont keep it inside. Post here too. You will never be judged. We all live in glass houses here. He are supporting you. You are not alone.
  11. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    #11 Lindy50, May 18, 2015
    Last edited: May 18, 2015
    Hi all :)

    I do so identify with what others have said. I have been caring for mum ( and dad before her) for more years than I dare remember. My own health is suffering, emotionally and physically, and I recently had to accept that I cannot expect to continue caring for mum 'to the end', which I had hoped to do. I need a knee replacement, and will soon need cataract surgery, just for starters.....

    Over the years I have heard people refer to 'letting themselves go' or conversely to 'looking after themselves'. Honestly I had no concept of the meaning of these terms. But since I've had to employ carers for mum, and address various health issues of my own, it's becoming clearer to me. 'Looking after myself' in my case, involves a lot of quite small physical things like keeping dental appointments, having my first ever podiatry session, getting my hair cut.....But mostly, it's mental freedom that I need. So I'm making a point of reading more. Tomorrow I'm hoping to go to the cinema to see 'Far from the Madding Crowd'. And I've just returned from a glorious few days away with my husband. All good....

    But what's the most important thing? For me, I think it's really engaging with these activities - not just going along with them to keep my husband company and keep our relationship alive. I have reached the point where if I don't allow myself real time and energy, I'll be done for :eek:

    The sadness will always be there, but it's reached a point where it's me or it, a battle for survival, almost. A battle which I hope to win, without losing the closeness and love I have for my dear mum.

    Im not sure this is of any help....but I'm sending my best wishes to all. We all have to find our own way through all this.

    Love, Lindy xx
  12. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    I don't know how it is possible to look after oneself? My priority is my husband and he has to come first at all times. That does not leave any me time at all . Sometimes I think I just get on with it without thinking because that's what we have to do. My life has change to his life if that makes sense and dementia has taken over everything. However I do try and look at each day in a positive way being it the birds singing, sun shining , garden looks lovely and concentrate of what OH can do rather than what he can't .

    Sent from my iPhone using Talking Point
  13. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    If we don't look after ourselves how can we be an effective carer? It is my opinion that we have to have a life of our own. If we are tired and resentful our responses to our loved one will lack empathy: the essential component of caring. For me this is all a work in progress - but if I don't have a life how can I effectively support someone else? My struggle at the moment is to develop a life of my own alongside my caring role.
  14. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I called them once when B was 1st diagnosed it was good to talk
  15. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    very well put, you have to stand back deep breathe and go on....and smile. (which I have forgotten how to, I can't remember the last time I laughed)
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi GL :)

    Unfortunately I didn't find this to be quite true for me. I can only too easily enter mum's world, and make do on scraps from 'real life' to keep me going. The problem, for me at least, is more around time lines. Our life trajectories were such that before long, I wouldn't be alongside her - we'd have crashed and my health would be (in different ways) worse than hers. And I wouldn't be able to look after either of us, let alone hubby, children, possible grandchildren etc. That's what I mean by a battle for survival.

    So, perhaps coming from a different place, my struggle is also to find and develop a life of my own :) x
  17. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    me time is the most difficult to achieve, because when I do get me time, I'm thinking out for B and mother. My mind wanders, and then time up, even dropping into a good book not easy....
  18. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Oh, I know Patsy, it's so hard ! The trouble is that I have more or less forgotten who 'me' is, so when people talk about 'me time' it makes only a limited amount of sense. Sounds like you're a bit like me! And that's the battle....to rediscover myself, so that I can have real breaks, not just time when I'm not physically with mum, if you see what I mean ;)

    I just thank goodness that I have a husband who has stayed loyal to me through all the years of my not really getting this. In fact it was him who brought me up short recently by saying he'd had enough, bless him .....

    Lindy xx

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.