1. Rebyette

    Rebyette Registered User

    Oct 10, 2015

    I am new, but have been reading for many months. My Mother is 85 and dementia started 5 years ago with a phone call to me to tell me something which she had called me about 5 minutes previously.

    For 2 years I have been there 3 times per day, 4 times actually since early this year. I live only a mile away, do not work (well, I gave up work to look after Mum), I have a 10 year old son and a very patient husband.

    I finally caved in and pleaded for help from Social Services. That was not easy to implement - a very tearful phone call to our doctor moved the process on slightly. The carers started 4 days ago and I am struggling. My Mum's routine is all out of sync. My routine is shot to bits. I truly have taken a step back but am still visiting 10 minutes after carers have left - I have to - Mum is all non-dementia when the carers are there.

    Stupidly, today, I fitted a new riser/recliner chair in her bedroom because most days she really cannot manage to her stairlift to get downstairs. Mum can hardly walk at all (very bad joints and overweight). I had to move furniture around a little in order that she could watch TV. She thought she was 'somewhere else' anyway but now I have made matters worse.

    Mum has forgotten her eldest child. This is my sister who has suffered from mental illness since she was 20 (now 58) and never left the house (same house as Mum) - I provide for her too but no need for personal care as yet. Mum has no recollection of her and refers to her as "that woman upstairs".

    Incontinence is fairly new. I have been using pads for 2 months. Trouble is, Mum takes all of the pads out of the packet and strips off the sticky strip. I moved them, of course. She also rips packs of the nappy sacks wide open. If I leave a box of tissues, she tears them all up. She is nodding away to the carers, telling them she is fine. I have been there 6 times today and dreading a call at 4am. Carer left at 6.30pm and I called at 7.00pm - she was still in the new chair and didn't know where her bed was. Honestly, it was just 'over a bit' - 6 inches I moved it. I immediately jumped in the car - she was soaked through. Soaking pad on the floor, soaking nightdress and pants. She is so immobile that it takes all of my might to get her dry and changed. It took a good 10 minutes to move her from the chair to her bed (less than a metre).

    This evening I said to my husband "it is time now". I have tears rolling down my face now. It is time for a care home now isn't it?

    She is not self funding. How do I even start the process? The Social department already don't like me because I involved the doctor and, truthfully, I did go a bit nuts on the phone with "duty of care" and "personalisation" emphasis to hurry it up - I was sinking at that moment.

    I understand that I need to give the carers a chance without my presence but the deterioration in Mum in the past month (before carers but after, so called, assessment) is shocking.

    All I do, my raison d'etre, is assure, reassure, repeat myself, repeat some more, bed bath, clean up **** (sorry, but I do some days), scrub urine from carpets (any tips?), weight bear, rub cream in, struggle with tubular bandages, dust, wash clothes, hang clothes and worry incessantly.

    Any advice, at all, would be so helpful.

    Thank you.
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    Hi Rebyette lots of others far more experienced than me will be along to help very soon. I am not surprised you have had enough! G L
  3. marionq

    marionq Registered User

    Apr 24, 2013
    It doesn't matter one bit if the social services are annoyed with you. It is on,y by making a fuss anything gets done. Yes the time to let them take over is now. She will be cleaner and more comfortable in a care home and you will get some life back with your child. You must step back so the carers can report the true situation.
  4. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    I would talk to the Manager of the care agency asap and explain that you are considering whether it is time for a CH. She should give you a balanced view and help you start the process with SS. And you can ask her GP and SW for a needs assessment for the same time. It does sound like you Mum would be better with 24 hour care....and the strain you are under would be hugely relieved too. If she goes to a lovely CH then she will be better cared for and you will be able to visit regularly and start enjoying the time you spend with her again rather than caring for her.

    Good luck with it - I know it's a hard decision - recently had to make the decision myself and still coming to terms with it.
  5. starryuk

    starryuk Registered User

    Nov 8, 2012
    Hi Rebyette,

    My goodness, no wonder you are exhausted, overwhelmed and have realised you can't manage everything any more. As you say your whole raison d'etre is caring for your mum. Time to review and consider the well being of you and your husband and son.

    As long as you are 'mopping up' after the carers, they will not see the real situation.
    You need them to report back to Social Services. You must let go of the reins or nothing will change.

    What about going away with your family for a short break? You certainly need one.
  6. Rebyette

    Rebyette Registered User

    Oct 10, 2015
    Thank you

    I must thank all of you for the replies to my first post. In those 24 hours of feeling at breaking point, just reading a positive response has truly helped me.

    On Saturday morning Mum just didn't know where she was. She loves the new chair but thinks that I have isolated her (it was my fear all along, buying this new chair). I visited 4 times on Saturday, mostly just to wipe tables down and assist her to her the loo. However, my brother visited at 6.30pm (carer was due any minute) to discover that she had fallen. He pressed emergency alarm because it is impossible to move Mum. He told them that he thought she had bumped her head (he has never had to deal with any situation, ever, previously). So, they refused to assist and suggested an ambulance - cue me. I raced down there and her head was fine - she bumped it, in all probablility on the new, soft chair. I called them back and they sent the ladies out with the 'pump-up chair'. Devastating to watch as Mum is in so much pain with her legs. It only took me 5 minutes to calm her shock symptoms and change the subject entirely after the ladies left.

    Today, she was sat on the new chair watching TV and telling me how comfortable and sleepy she feels in this chair. It took me around 10 minutes to get her to the toilet - a twist and turn with hallway - about 5 metres. Is that normal? I mean, is it acceptable to be living alone with 3 care visits per day and me being there umpteen times per day and need assistance to the toilet every time? I phone her now once every hour and a half to see if I should drive down to take her to the loo. That's not right is it? Also, she had no recollection of her fall last night.

    Anyway, I drove down at 6.30pm this evening and a carer was in the kitchen who had changed pad and nightdress etc - she was very nice. We chatted for a bit and she said Mum had wanted to actually be in bed (no TV or anything). I went upstairs to stick my head in and she was in floods of tears! Truly crying - I assured and reassured and kept asking what was wrong. For the first time, she was very angry with me. She was saying "it doesn't matter what you think" and "you will do what you want anyway" and "I don't care what you say". I stayed for a while and said what I say to my son - "if you don't tell me, then I can't help". She then hit me with a clanger: I MISS MY FRIENDS AND HATE THIS PLACE. This has been her house for 45+ years. She never had friends coming around. She was very sociable as a tailoress and my brother (yes, twice in one day he features - he hasn't featured for over a year) tells me that she liked the middle of a party. He is 15 years older than me.

    I asked her if she would like to be in a place where she had people her own age and could chat. I even said that she may dislike some people. She was crying all the while and kept nodding. So, as decisions go, my Mum is asking to be in the environment of a care home right? Or is dementia thinking something else? And, does the fact that she is requesting this have any influence on a social services decision or time scale?

    I know that she will have forgotten all about this tomorrow. But, it makes me feel less guilty, if that makes sense?

    Meanwhile, I managed to wash a very full load in machine with an escaped incontinence pad!!!! What a mess. A huge mess. Looks like it's been snowing all over the downstairs (I carried the wet load in my arms) and a huge gloopy mess I had to clean out of machine drum. Is it just me?

    I wouldn't go away for a weekend (in answer to a very lovely response). I would love to get out for dinner though. I only wear make-up now on a Tuesday when I go for Mum's shopping. Non make-up days would frighten the French. I only mention that because I live in ‘sweats’ daily now and my knees are always wet with some damned thing. I would also love it if my son could have a friend here for a sleepover. It's just not possible in case I get that call between 4am and 7am and need my husband to come with me (if it's a fall).

    If anyone reads this, I would dearly appreciate any advice, especially with timescale (I am fully aware that it's individual, case by case) where care homes are concerned. I mean that, so far (touch wood), Mum has not been admitted to hospital and I do not wish to wait for that to happen. I should have had a care plan in place 2 years ago but gave up my career for what I considered my duty.

    Thank you for listening.
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #7 Shedrech, Oct 12, 2015
    Last edited: Oct 12, 2015
    Morning Rebyette
    You've written at length in your posts, and what a situation you are in.
    You are doing an amazing job for your mother - but .....
    Take a deep breath and then read back your posts as though you are me, you've never met the person in the post, you read it carefully .... and what do you think? What would you write in response?

    There are 2 moments that stand out for me
    Me - I'm saying - get on to her GP, and SS and show them these 2 posts. Maybe even go talk to your GP as you are in danger of wearing yourself out.
    Other responders have suggested you step back - and I concur with that, hard as it may be. Now your brother has seen for himself, let him help! Let the carers take the full force of your mother's needs to prove they can't be met by carer visits in her own home.
    Just think (I know you won't want to) what would have happened if you had been ill over the last week and totally unable to leave your own home?

    One last quotation
    Makes a lot of sense.
    So set the wheels in motion.
    As for timescales - nothing can happen until you SHOUT that it must.
    However, if your mother will be self funding, there is nothing to stop you looking today for a care home.

    Very best wishes
  8. henfenywfach

    henfenywfach Registered User

    May 23, 2013

    I'm am my dad's carer he has dementia for long while.
    Can I suggest you read the bookcase cenario! This may give you more understanding of how things affect her. For example if her memory stage is when she was younger with her friends having sleepovers she might be missing them terribly. In her mind she's living in that place and time and everything is so different the house the people, objects fashion. Could even be looking for her mum!

    This is her reality and imagine waking up every morning in a different era. How startling thar might be for her.
    It trial an error to find clues as to who her friends are and what she wants...but see her life through her eyes.
    The dementia friends session is excellent and might help your family and friends gain more understanding. Best wishes
  9. Rebyette

    Rebyette Registered User

    Oct 10, 2015
    Hello again

    So, on Monday afternoon (thank you Shedrech), I called Socal Services asking for the same woman manager I have been dealing with (most unpleasantly at times, I should add) for the past month. She was in a meeting so I asked if anyone else could help at my stage of enquiry. I gave a synopsis to the staff member, mentioning how wonderful the carers have been but expressing my concern for the need for 24 hour care and I did actually say 'care home'. I was assured that said manager would call me after her meeting and that the next step would be for her to arrange a social worker. I will be honest here and say that I truly thought that she was a social worker. I had no idea I was dealing with office management through any of this thus far. Needless to say, I am still waiting on the return call.

    I would have called back but am going through all sorts of guilt and mixed emotions. Mum has been very happy and content (mostly). My brother moved in! Albeit he is leaving at 7am and returning at 9pm (his work). BUT, the relief I feel for during the night is wonderful, truly life changing. Honestly, I am free for a night's sleep!

    Mum has said "I don't like being here on my own" and her handbag packed: "you are here to take me home". I find it easy to concur with where her mind has gone, and agree with her era of that particular day, but I find it difficult when she is ready to leave with me. I did broach the subject another twice this week, saying that I don't like it when she is upset and that I would try my best to make her happy and reminded her that she wanted to be in a place with people surrounding her. She thinks for a moment then tells me to "just forget about all of that nonsense". I go downstairs to put a washing on and on my return she is telling me that she feels that she will settle into "this new place" just fine. She is confusing mirrors for doors and for 'other people' being present in the room. She has tried to find the toilet through the curtains in the last few days.

    Ok, I am waffling on again, sorry. I can now comfortably visit 3 (4, realistically) times per day, also with 3 carer visits. I have asked my brother if he could be there after 5pm for one night in November as we have been asked to a charitable evening and kids are most welcome (I don't even know how to go about a night out anymore!).

    So, have I jumped the gun with care home idea? Is fate lending me a hand with no return call from social services?

    *head in hands*

    Also, I have of course seen the bookcase analogy and I do so try to implement this mindset daily but curveballs and minor fires just keep happening! Metaphorically, of course.

    Thank you for reading and any advice on this recent lull is most welcome. Mum is not settled at the moment - you just 'know' that don't you? But, neither is she unsettled to the point of 'something has to be done', which is how I felt last week. Aaaaargh!

    Thank you everyone who has responded to me. It's scary entering a forum.

  10. Kerryblue

    Kerryblue Registered User

    Oct 4, 2015
    I feel for you

    Hi. I too have just started posting on this forum. Just wanted to say I am/was scared too. I have found people so kind and helpful. Even in the night when I feel absolutely wretched. Sounds like you have so much on your plate. Don't be scared. Share. I just have again tonight. Yes we are desperate. But not everyone understands this cruel and vile disease. I wish you all the best. Sincerely. Kerry.
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi again Rebyette
    There's no timetable to these situations - if you have found for now a comfortable mix of home care and your visits, then go with that. Great that your brother is now in the mix with you too :)
    And thoroughly enjoy your night out (plan a few more!!)
    You may just start a bit of research into local care homes, and day care, and pay a few visits. Can't be wrong to be prepared for whatever the future may bring.
    Kerryblue is right, TP is a godsend, keep sharing!

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