1. marfy

    marfy Registered User

    Mar 27, 2007
    Hi all, my mum was diagnosed a year ago with Altheimer's. Since then I've struggled with how I should deal with things. I've never really liked her but seem to be the only one who constantly 'just gets on with it'. I don't shout from the roof tops about the support I give her; neither do I constantly moan, I just try to deal with her quietly and consistantly. My family, quite numerous, seem to vie for the 'best' sibling award. I don't want to do what I do but I do, no one else is able to give that time to her. I now visit my mum every day, some times several times a day. Some of those visits are really interesting; she tells me things I've never heard before. I often feel as though I have a window on her world pre marriage and kids, which is great; there are stories I've never heard or appreciated before. She has so many experiences to share. What I find hard to cope with is the pressure of visiting her on top of a really busy job and my own family needs. I'm constantly exhuasted and feel as though this will never end. I'm sure others feel the same, but it isn't helping. Every week I need longer to resolve the problems and take more time off work. My partner finds it difficult to cope; he really doesn't understand the effort given to caring for her. My brothers and sisters are alll to quick to judge; they have no idea of the effort involved; typical comment is 'well I have her for a week at a time'.....I have her everyday; everyday I try to support and encourage her. If I saw her for a week every three months I think I'd die and go to heaven! I feel as though I'm at my wits end. I look forward to the day when she goes into care but at the same time I try everything I can to keep her at home and maintain her independance. I think I'm lost and very tired. I want the best for her but also don't want to be involved - dilemma - tell me about it! Help I'm going mad!
  2. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire

    It could have been me who had written, the above, but subsitute her for them.

    This is how I often feel. Those who aren't dealing with our relatives on a day to day basis are always quick to judge and probably think they are providing great support and critisise the one WHO IS providing the most care and of course they could do it better. I for one wish they would try, and if proved right, would gladly hand over all responsibility!!

    Both Mum and Dad have AD/Dementia. I swing between -- Would they be better of in care?? Or can I do more to make them happy, stimulate them? Sometimes my patience wears very thin, because, while Mum is a character and very funny at times, she can also be difficult

    I really know and have been told by various professionals, it is past the time when they should be in full time care, but I would feel really guilty if I agreed to it. I guess, I will just cope and hope that something happens to make up my mind for me. Maybe I am a coward.

    You have your own life and your own family,Can you get more help from SS in caring for your Mum? If not and you are exhausted then maybe you should think about permanent care, if none of your siblings are prepared to pitch in and help.

    As you have said you have just got on with it, quietly and competantly, until now, Maybe a family conference would help.

    Look after yourself

  3. Kayla

    Kayla Registered User

    May 14, 2006
    Dear Marfy,
    I tried to keep my Mum in her own home for as long as possible, but it was very difficult, especially as she had a lot of physical disabilities as well. Mum had a cleaner once a week who chatted to Mum as she did the housework and I think it helped a lot. We also arranged for a carer to come in two or three times a week to help with washing and dressing and she was willing to do extra jobs in the house or garden such as window cleaning or tidying cupboards as necessary. It helped to have somebody in the house as company.
    The social services might also help provide carers and home helps, but you might be able to make your own arrangements. Day Care Centres are also useful and the GP or Social Services would refer people to them. There might also be support groups in your area where you could meet others in the same position. There is quite a lot that can be done to ease the work load before considering a care home. Respite Care can also be arranged, which would give you some time off.
  4. janishere

    janishere Guest

    I see danger signs

    I see danger signs in your thread. Your partner is getting very fed up probably because he is not getting much of your attention. Your work is suffering too. If I was analysing you on the couch I would say you are caring too much, a bit of a "rescuing hero". No wonder you are getting feelings of "burnout". I would suggest you stop rescuing your Mum all the time, as another poster wisely said, have a family conference, a good idea, and announce to them that you are not going to carry on wearing yourself out like this or you will lose your job and your relationship as well. And then "walk the talk" and stop behaving obsessively over your Mum. Think about it, if you were to become ill yourself or die, your family would step in to fill the vacuum. Your family are using and abusing you and getting away with it!

    Last but not least, talk about this with your partner, I expect you will get his support for such a plan of action as I have suggested. He can go with you to the family conference and bat for you. But if you find the courage to do this, do not fall back into the old ways. And if you succeed in it, you and your partner will be much happier, so will your employer and you will get more respect from your family. Even your Mum might be happier, when she sees you are happier. An obviously miserable and stressed daughter is after all not of much use to her or anyone else. Then the times you do see your Mum will be quality times.

    I know this is a bit of a lecture, my excuse is I was a teacher once.
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    And it only gets worse...... I was like you and I ended up giving up my job and looking after my mother full time, shame TP was not around then in 02 , sounds like good advise janishere has given you , just that it also sounds to me your have to be very disciplined in your emotion to do that , which I can never be , but am learning , Good luck and moan as much as you like .
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear Marfy

    Just want to send a hug ....

    How many days - however much it is done for love not duty or whatever reason - I have felt 'life is just jobs' - even the rare days I DON'T see mum - there always seems to be some errand, some task ..... it wears you down .... (well, it does me)

    I've had a year's support here in emotional terms - only now am I recognising I need more 'hands on' support to take over the basic tasks and allow myself to do the basic tasks for myself - going to work, looking after my own family - even daring to have some time for myself .....

    Mum's needs are evolving and changing constantly ..... so too are mine and the demands made of me .... perhaps we should not lose sight of that ......

    Love Karen, x
  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Good for you, Karen. Your needs are important, and you need help. You are trying to keep too many balls in the air at the moment.

    Why don't you ring SS and demand a carer's assessment? I'm sure your situation entitles you to some respite. It sounds as if your mum is quite sociable, she'd probable enjoy a day centre, or having someone from Crossroads to keep her company. They could take her out shopping, or out for a drive, and that would take some of the pressure off you.

    Marfy, I'd give you the same advice, although in your case, janishere's suggestion of asking the family for more support is good.

    I think it's always good to get SS involved as soon as possible. Once you're in the system, it so much easier to up the support.

    Love to all,
  8. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Marfy

    There is another way of looking at this!

    In retrospect I sincerely wish I had considered mum moving to the NH long before she actually went. But hindsight is a wonderful thing.

    Mum hit crisis, I hit crisis, my brother hit crisis, in the end we had all burnt out, to everyone’s detriment, not least mums. What I am trying to say here in a very clumsy way is that it’s not always to everyone’s benefit to continue struggling on trying to keep loved ones in their own homes.

    Mum is much happier in the NH (but wouldn’t admit that in a million years), she is better cared for than I could ever accomplish, both physically and in terms of mental stimulation. I had this vision that every NH was God’s waiting room. How wrong I was.

    If you go ahead with a family meeting, good luck with it, I hope they see that you are clearly near the edge.

  9. lou lou

    lou lou Registered User

    Nov 9, 2005
    Oh Marfy, how I feel for you. My mum went into a nursing home in June 2005 following a series of falls and infections. I had gone on holiday to Peru and had set up carers and district nurses to come in 4 times a day but it wasn't enough.I came home because my mother in law died suddenly

    I had been staying with my mum during the week but for once I couldn't drop everything and run as my husband and children were grieving and I had developed a heart condition. Like others in retrospect I had tried too hard to keep mum at home and the first six months were miserable for all of us but she has settled down now. Before she went into the nursing home I felt like I was coming home from work and then doing a night shift.

    True enough something happened that made the decision for me otherwise I'd probably still be wearing myself out. Now I can visit and enjoy our time together and no longer feel resentful of my brothers who never came to visit and didn't believe how bad mum was. They still don't visit ( well my youngest brother does) but she doesn't remember anymore. She told me Paul had been to visit last week, it was Colin, I'd seen his name in the visitor book when I signed in.

    I couldn't afford to give up my job to look after my mum which was probably just as well.Mum going into the nursing home felt like a failure at the time but to be cared for with some dignity and respect is no bad thing. She has company when she wants and quiet when she doesn't and I'm not stressed to bits wondering if she's left the gas on, flooded the house or set fire to the microwave ( it happened 4 times).

    I guess it's never an easy decision to make but in retrospect it was the right decision. But as one on my doctor colleagues says, the retrospectascope is a wonderful instrument it's just that nobody has invented it yet.

    Lind regards

    Lou Lou
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    That is quite, quite brilliant, Lou, Lou - thank you so much.:)

    More, importantly, I personally wanted to thank you and Cate for what you have shared - the prospect of mum ever going into a home fills me with thoughts of abject failure - to even think that I am even thinking about the possibility at some point in the future has the Guilt Monster railroading in .... when perhaps there is a very positive side to what obviously is a very painful decision .....

    Thank you, for me at least, one little black cloud just lifted....

    Love, Karen, x
  11. allylee

    allylee Registered User

    Feb 28, 2005
    west mids
    Dear Marfy,
    my mum went into a NH three weeks ago, after being cared for at home for three years. Like you I worked full time, juggled my own family and my marriage collapsed as a result.A month ago I was a burnt out wreck! My own fault. Id steadfastly refused respite care, soldiered on, totrured myself with guilt at the thought of putting mum into care.
    Three weeks of nursing home care, and I have realised that in fact I was failing my mum , my family and myself. Cate is so spot on with her comments.
    Mum looks wonderful, the anxiety and panic she suffered every evening has gone, her brow is less furrowed, she is more relaxed, her hair is kept beautifully, and she looks less "wild".
    Our time together now is great, Im not short tempered and frazzled, I visit three times a week, and walk away content in the feeling that mum is being cared for as she deserves, is safe and Im getting a bit of life back.
    Dont let guilt, pride or stubborness, or whatever it is that pushes us to the point of exhaustion in this situation win the day Marfy.Learn by our mistakes:)

    Lots of love
  12. marfy

    marfy Registered User

    Mar 27, 2007
    Just wanted to say thanks to you all for replying to my message. Finally I've found some people who understand my view point and people who have something to share. Can't tell you how much that has meant. Thanks again:)
  13. sophie123

    sophie123 Registered User

    Feb 14, 2007
    Hi all,

    Just thought I'd add my two-pence worth! I admire so many of you who have given up your day-to-day lives to care for those who need your help, I so wish I could have helped my mother before the dementia really got to her. As I'm only 21 and at Uni, and my elder sis lives an hour away from home, our only option was to find a good home for our mum, as she couldn't cope on her own and a full time carer was not an option. If this had happened 20 years down the line, we might have been able to help her more ourselves, but we both realised, as did our friends and family, that we had our own lives to lead and were too young to deal with such responsibility. I am her official Receiver though, and we see her on a weekly basis - sometimes I just feel that's not enough for her though - although she doesn't really know who we are, she still responds when we visit. It scares me to think what the scenario will be in ten years time, but unfortunately we don't have a futureascope either!

    Sophie x
  14. zonkjonk

    zonkjonk Registered User

    NH placement

    My mum at her worst point (living with my pathetic carer brother)
    and me on weekends weighed approx 7 stone
    upon my last visit to the NH, last friday, astonished to find she is now a size 14 (au)and needs new clothes.
    as much as you may wish to care at home (just one person,) you can never ever compete with a team of 24 hour carers including nurses,doctors,shoppers,cooks, cleaners, laundry staff, activity staff etc etc
    I was scared about how I would place mum at the right time,so she wasnt too aware
    our first respite she was too aware( just prior to christmas)
    3 weeks later her principal carer(my brother) declared he was "unable to be responsible for his own actions" which forced me to place her fast.
    well I visited on easter friday and she said "thankyou for coming"
    Mum always was polite. She expressed being pleased at the quality of the food and thought I was her sister...I suspected for the last 6 months or so that she didnt really know who I was as she had not called me by name in that period despite coming to my house every weekend from sat morning to sun arvo
    I think (within months ) that I timed it perfectly

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