I am finding this all too much at the moment.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Michele, Feb 11, 2010.

  1. Michele

    Michele Registered User

    Oct 6, 2007

    I am really finding everything hard to cope with at the moment. I feel like everything is just too much and I am scared.

    Mum has taken a dip the last couple of weeks. Getting in a complete muddle with the days, her phone, etc etc. We have the care package put in place and they come in the morning for about 1/2 to 3/4 of an hour and the evening for about the same time. Mum is fine with this.

    The thing I am finding hard to cope with is mum living on her own. I am scared about it, scared what is going to happen, how she will cope, and how we will cope.

    She told me last night that she hates being like this and that I need to chop her head off :eek::eek::eek:

    How do you cope knowing that your loved one lives on their own?

    I know we can get more help, but it still scares me that I am loosing my mum. I can no longer talk to her about normal things. My mum is dissappearing before my eyes.

    I hate this.

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    If you are really worried about your mum Michele and you feel she is at risk, perhaps now is the time for you to look for somewhere really wonderful and safe for her.
    Yes I do mean residential care but you have time to look around rather than wait for a crisis, and it is the biggest thing you can do to keep her safe.
    Then the responsibility will be off your shoulders, in the hands of others and you will have the time and strength to spend quality relaxed time with her, instead of all the anxiety and fear you are suffering now.
    I know what a big step it is, that`s why I`m suggesting it now so you have time to think about it.
    I do hope I haven`t been too outspoken Michele and added to your upset.
    Love xx
  3. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Hi {{{{{Michele}}}}}

    I can't offer any words of advice but can only say that I know what you mean about loosing your Mum. I feel the same way about my Dad.

    I notice in another thread you said how a song had you trying to hold back tears ..... well, yesterday in the cold hours of the night (2.30am to be precise) I woke and found I couldn't hold them back! And the same again when I eventually was getting ready for work at 7. Boy, did my eyes feel dreadful during the morning!

    I think it's the sense of helplessness.

    My Dad doesn't seem to be very well at the moment; probably 'just' an infection. However, we have just 'clocked' the 1st year of him being away from home and reflecting over the past year is not good. He has deteriorated but I struggle with wondering whether it really is the disease or the hospital ward he is still in. Should we have made more effort to keep him at home? Probably not, as my Mum was at risk.

    Which is of no help to you! Is there any possibility that you can make regular phone contact with the carers? May such contact enable you to find out if anything is amiss so that you can make extra arrangements only when they are really necessary? Just a thought.

    Take care,
    Love Elaine
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Michele

    I think it's absolutely normal to be scared. It's something those of us caring for partners don't have to cope with, though I know I was always scared when John went out for a walk on his own. It's scary not knowing how someone with dementia will manage on their own.

    I think you should ring your SW and ask for a review. If your mum has declined, the whole care package needs to be looked at. Try to decide what you would like to happen. More care? Help with meals? Even admission to a care home?

    If you sort out your thoughts in advance, you'll be able to put your ideas across calmly, and not just have to agree with everything they say.

    Unfortunately, the feeling of being scared probably won't go away. I'm scared for John even though he's in a home. But if you have done everything possible, hopefully the feelings of panic will subside. I hope so.:)

  5. Michele

    Michele Registered User

    Oct 6, 2007
    Hi Sylvia,

    No you have not been too outspoken at all. In fact I like your honesty and support on this one. I think you are right, I think it is about time the family got together and started thinking about this.

    Thank you Sylvia, you have been a great help.

  6. roundy

    roundy Registered User

    Jan 1, 2009
    Hi michelle
    This time two years ago you could have mistaken your post for one of mine! I felt exactly the same thing, mum was on her own, we did have a full care package but it was not enough, she had to be looked after 24/7. Oh, I tried!! Ran round like a headless chicken for best part of 18 months. Finally the social worker took the decision out of my hands and said it was time for my mum to go into ahome! It broke my heart but I did it and now my mum is cared for, has company and I still enjoy every minute withher. It still gets to me now and again, I hate this illness too!
    My advice would be, start looking and find your mum the very best place you can!
  7. imac.girll1

    imac.girll1 Registered User

    Feb 20, 2009
    Oh my dear Michelle, how i know what you are going through.

    Now you may ask how? As mother lives with me, but even though i see her daily, i still see her going down, not managing remotes, phones, etc etc.

    Now i appreciate this doesn't help your case right now, but to say whether she is on her own or with you, you still feel stressed, scared and worried, and tears often spring to my eyes, more than i would like, for example, right now!

    I agree if you are able to look at a good care home etc, maybe even a little closer to you and the family that might be wise.

    Has mum put up total defense barriers against care homes etc before? Maybe when she is in her way of saying just 'chop my head':eek:(i often get 'just shoot me' scenario), you can say are you scared at being alone? Do you want more company? And try to bring in the subject in a positive way of being with others in the best place for her.

    It is of no help sometimes all these words, when you actually have to come to do things, but just remember we are all here for you and your family as and when you need us.


    Much love xx
  8. Michele

    Michele Registered User

    Oct 6, 2007

    Thank you all so much for your help and understanding, it means a lot.

    Love to you all.

  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Hi Michele. I can so identify with your worries. I think it’s excellent advice to look at ‘other options’, shall we say, in preparation for when the need arises .... but don’t forget, there is no knowing when that need might arise ... it could be a long way off yet.

    I know I was helped having OTs and other people regularly assessing mum in her own home. Still doesn’t stop the worry. I went through a spell of ringing her through the day from work (even though I had called in a morning and would be there again later). Getting ‘no answer’ just had me in a dizzy fit, wondering where she might have gone/why she couldn’t get to the phone etc.

    It took some resolve, but I learnt I had to ‘switch off’. If mum has carers going in twice a day, apart from whatever visits she has from you and your sister (?) she is never on her own for too long and they should be able to ‘feed back’ to you any concerns. I know the only days I ‘relaxed’ at work (or should I say concentrated properly at work) were the days I knew she had her buddy visiting/taking her out to her Dementia Club and that I would be alerted immediately if there was a problem.

    I know I hated the days too when mum was lucid enough to have some understanding of what was happening and became distressed by it. This disease knows no bounds of cruelty does it? How bizarre the days she was 'blissfully unaware' were somehow easier to deal with?

    Thinking of you, Karen, x
  10. grumbleweed

    grumbleweed Registered User

    Feb 10, 2010
    #10 grumbleweed, Feb 11, 2010
    Last edited: Feb 11, 2010

    Hi Michele,
    I think what you are going through is exactly what we all go through at times and is to be expected. Doesn't make it any easier of course but I do feel as options are limited it is how WE deal with it that makes the difference.
    We are 'carers' after all and as such the kind of folks who wear their hearts on their sleeves and get affected by everything going on, if we weren't we'd be like some calous people who just let their loved one (Huh!) get on with it and are blind to their needs.

    We are unable to turn off or change and so need to deal with it and control it best we can or we'll go under and then what?

    I really feel for you, I only help with my mother-in-law but find as this progresses, almost every waking hour is filled with thoughts of how she's coping and how can we do more...are we doing enough, is she O.K. between visits.

    Easy to say, you do need to stay strong. As some wise sage said to me on here only yesterday in answer to my question "What's best" "What you are doing is the best" in other words we are all doing what we think is our best, our folks need us and we must stay strong for them :)

  11. Mo_N

    Mo_N Registered User

    Oct 29, 2009
    South East Essex
    Hi Michele,
    Reading your post I realised it could have been written by me! It sounds like both our Mums are at the same stage. Like you I am a distance carer & I agree it is very scary when I know Mum's on her own. Going into a home isn't always the answer. My Mum went into a rest home for a few weeks while I was sorting out her care package & although she was well cared for by lovely people she couldn't wait to get back to her own home. I did rest easier while she was in the home knowing she had someone with her 24/7 but there was little stimulation for her & she hated feeling confined. Our solution ( which I know won't be satisfactory long term) is for carers to come in 4 x daily and Mum has a full telecare package which consists of the emergency alarm pendant, smoke & flood alarms and a bed sensor which is set to alert if she isn't in bed by a set time and also if she gets up in the night & doesn't get back in within a specified time. We could also have had bogus caller & front door sensors if we had wished. This was all set up by our social worker. As Mum has continuing care status she doesn't pay either. Perhaps you could go back to your social worker & see if there is something similar in your area. I would also suggest you contact the Azheimers society branch in your Mum's area to see if they are going to be operating the new "Befriender" service. The co-ordinator at the Memory Clinic that diagnosed Mum's AD told us that the idea is that a trained volunteer would allocated to Mum to call on her on a regular basis to encourage activity & social interaction. It's a very new scheme & the training is still going on so I cant give any more details but I'll put a post on TP wen Mum's had a couple of visits.
    Feel free to pm me if you want to know more, or just to compare notes .
    Best wishes to you & your mum.
    Mo. x:)
  12. Beezed

    Beezed Registered User

    Apr 28, 2009
    Dear Michele,

    I too was in your situation about five months ago but perhaps my mother was further down the line. I worried myself sick about her being alone and the final straw for me was her failing mobility and inability to even use the kettle.

    She is now in care and doing as well as can be expected. The care home is very close and I see her almost every day. She is safe and has company and is very well cared for.

    It may be time to at least start looking at care homes before you have a crisis. I wish you well.

  13. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    Ashford, Kent
    Hi Michele

    My Dad often says I should 'chop his head off'. We just laugh with him and roll out eyes and say 'not just yet Dad'.

    He does know he gets confused, but it doesn't seem to really upsete him at the moment. He just tells me I shouldn't have to look after him and that I should send him off to a home (which I am just nowhere near ready to do).

    Before my parents (now only Dad since we lost Mum 2 years ago) came to live with us I used to get really upset at how they would cope getting older. I also used to feel physically sick at the thought of one dying and the other being left alone.:(

    I felt that way when they were both still very very independent, and it was just the fear that they may become ill etc.

    Whilst life does have it's fraught moments here and there with Dad here, I at least don't have that worry about him as I know just where he is and what he is doing.

    If your Mum really is getting too confused maybe it is time to evaluate whether she can safely live on her own now.

    It's a horrible illness isn't it.

    Keep your chin up.

    Beverley x

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