Advice desparately needed on caring at home

Discussion in 'ARCHIVE FORUM: Support discussions' started by KYM, Jun 8, 2006.

  1. KYM

    KYM Registered User

    Jun 8, 2006
    We first discovered my mother had Alzheimers after my father died in 1999. We then discovered her memory problems and suspected my father had covered up for her, recognising the early symptoms. One or two comments he made on his death bed fell into place later but were not understood at the time.( It is hard to write this as my eyes are bleary. It is not often you recount the details.) At first she was part of the research project at the Brace Centre in Bristol and was on medication which I now recognise considerably slowed the progress of the disease. She was living alone at the time in her own home in Bristol and I lived about 10 minutes away, and despite her having a home help most days I had to call 2 or 3 times a day to make sure she took her medication. I was also working at the time.Eventually she herself became so worried about her distress and inability to cope with even the most menial of tasks that she decided she needed to be looked after. Her state of awareness at the time was such that I knew that she would not be able to allow herself to be looked after by me and we found a very nice residential home close by where in more lucid moments she has said she is very happy. As she sold her home she was paying privately at first but the proceeds of her flat were only modest and the LA have now taken over the payments I have had to move further away and live about 35 minutes away up the motorway in Gloucestershire. They eventually decided the medication was probably doing more harm than good by heightening her awareness of her own incapacity and stopped it about 6 months ago. She was recently admitted to hospital following a collapse and was diagnosed with a clot on her lung(a pulminary embolism). She now therefore has regular blood tests to monitor the oxygen levels in her blood and takes wolferin. Since her spell in hospital her mental condition has deteriorated quite alarmingly. I think perhaps that had something to do with the lack of oxygen to her brain. So much so that the residental home has now indicated that they are not sure how much longer they can continue to meet her needs. I have been looking at nursing homes and specialist dementia homes closer to where I live but the problem, as so often is the case, is funding to get her into one of the best homes available and naturally I want the best for her. Social Services are presently unwilling to say she has EMI nursing needs but say she is EMI residential so that limits choices considerably but her condition is changing almost on a daily basis. Rather than accept second best I have started to consider caring for her at home. I gave up my job about a year ago, with my husband's support(I think!) as it was a very stressful job and as well as mum in a home in Bristol, I had a spinster aunt who had no one but me, in a Nursing home in Weston s mare.She was not suffering from dementia but in her 90 s and getting increasingly more frail. Just as well I did as this year I have had both of them in hospital at the smme time and in separate hospitals 20 miles apart from each other!My aunt has since died and I am now dealing with her estate. Rather than accept 2nd best for mum one of the options I am considering is for her to come and live with me here. There is accommodation which would be suitable with relatively few adaptions necessary. I realise it would be a huge committment and would like to hear from anyone else who has had a similar experience before I make up my mind finally. I do not want to recriminate myself at a later date for not taking up this option without fully considering it and I don't know where to turn for help. On this matter I know my husband supports me. He wants the best for her as I do. I have 2 grown up daughters one of whom lives abroad but the other lives in Bristol and I will need her support I know as I have no brothers or sisters now living. I know I will need to find out from the LA what financial and practical help would be available but I should be glad to hear from anyone about the emotional consequences etc. and what practical help was available to them. I do not think I have ever had to make such a huge decision with so little knowledge or help and am at my wits end.
  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya KYM,
    Can't help you on this one, but others will. Just wanted to welcome you to TP, and let you know that you are not being ignored!!
    I am sure that you will get some replies later on.
  3. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi Kim

    I'm not going to be much help either as my Mum is in a care home. My dad had also been covering up how bad mum was before he died, although we did know she had AD, we just never really realised how bad until he died. My gran also had AD many years ago and mum and dad always said that if anything ever happened to them, to find them a good home to stay in.

    I know there seems to be a lot of people on this site who are in a simialr position to you, so I'l sure someone will offer you some good advice.

    Take care and don't forget to look after yourself as well.

  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  5. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Norman,
    I knew that you would come up with a fact sheet reference - do you have a list of them?
    Kym, some random thoughts:
    1. Have you discussed with your daughter what support you would need. Does she have a family, and would they be prepared for the time she might have to give.

    2. Are you prepared for disturbed nights, little privacy, repeated questions, lack of freedom to come and go as you please?

    3. Pratical help available; well you get a CPN involved who will probably call once a month to discuss your mum's needs, and any chamnges. You may be able to get some day care, or a placement in a day centre, to give you some respite. There are practical aids that you can get if mum has difficulty with walking, or when she becomes incontinent, or if you have trouble bathing her.

    As I said, just random thoughts.
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Kym,

    My sympathies at your situation. My 87 y.o. Mum is at quite an early stage and I live with her. Basically she's still OK to be left at home during the day. However, she repeats the same questions time after time (What day is it, What have I got to do today etc.) but is unable to retain the answers. That's the crunch really, isn't it. She's unable to take in or learn anything new. Even if it's a new device or gadget to make life easier (like a phone where you just have to put in a 2-digit code, instead of dialling the whole 11-digit number) she just can't learn to use it. If she couldn't do it before AD, it's a no-no, however good an idea it is.

    This inability to adjust is going to be the crunch point for your proposal to take Mum into your home. Believe me, I totally understand your determination to do the best you possibly can for Mum, with no compromise. BUT, will she be able to adjust to living in another place - even if it IS your home, with which she may already be familiar (you believe). I would suggest that - if it's possible - you bring her home for a weekend visit, to see how she gets on, before you burn your bridges & abandon her present arrangements. It's important that YOU remember this. If she is not at ease there by Day 2, she may not ever manage properly. However, if she remembers her way around in your home, you may have a fighting chance. (I'm not sure how mobile your Mum is; if she doesn't get around much, I suppose remembering the 'geography' isn't so relevant.)

    I appreciate that I don't fit your criteria
    and these are just my thoughts based on my own Mum's decline so far.

    From one loving daughter to another, good luck, whatever you eventually decide.
  7. mel

    mel Registered User

    Apr 30, 2006
    Hi Kym
    My father died in Feb 2005
    he kept mum's dementia very well hidden and my brother and I only discovered the real extent of her illness when dad was admitted to hospital 3 weeks before he died.
    Since then my brother took over the primary care of mum....He gave up his job and went to live with her. I went to stay with mum originally at three week intervals to give my brother the chance to go home to London to see his wife for 4 days, then i went every 2 weeks and latterly most weeks. As I was working part time I found this very difficult and became exhausted. We had originally thought of placing her in a care home but as she had seen 2 sisters in that situation and knowing the distress it caused her at the time(This was pre dementia) I couldn't face doing that to her.
    We were extending our property anyway so obtained further planning permission for a ground floor bedroom and shower room.
    Mum moved in with us 22nd April so we are still at an early stage in the game.
    I have to say the first 4 weeks were an absolute nightmare...Violent outbursts, temper tantrums,wandering off,pacing about,wetting the bed,verbal abuse....So yes it is incredibly hard...Just when I was thinking we were getting somewhere i took another couple of right hooks today....because I didn't have time to take her out!
    I have 3 kids at home aged 17,15 and 11 and a lovely husband BUT if I am honest they are suffering ....not so much with my mum's prescence but with MY moody outbursts.
    It is a huge committment...My husband and I have been out together ONCE so far(we were due to go out last week but mum was too grumpy and although the older kids were more than happy to "nanna-sit" I didn't think it was fair)
    I have social services involved and we are waiting for a day care place and respite can be arranged as long as plenty of notice is given..(.mum is self funding so I'll have to check with my brother on this...he has POA on mum's affairs )so at least I know I can get respite if I need it
    Yes it is has taken over our lives but it is my choice and I do feel I have to give it a go before considering a care home.
    Hope this helps
  8. KYM

    KYM Registered User

    Jun 8, 2006
    Thanks everyone for your messages. You have provided some food for thought. She has to move whatever happens because the care home where she is living at present cannot continue to meet her needs because of the present rapid progression of the disease. I suppose I always knew she would have to move sooner or later.She has started to get aggressive with the other residents and the staff and they are not specialist dementia home. This is totally out of character for her. They are upset about it also because the staff have always been particularly fond of her. I suppose rather optimistically I am assuming that as I would be caring for her on a one to one basis I would be able to control her aggression to a certain extent Is that unrealistic?
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Wendy,
    Wendy, don't wait until you need it, get it built in as part of your schedule - no point in waiting till you are burnt out to take a break. Also a statement of commitment to the rest of the family " I've taken this time because I want to be with you - all of me, not just the left over bits."

    Could you and your husband go out locally, and let the children 'nanna sit', so that you are nearby if there is any cause for concern. If not, could you arrange for a 'friend' (private carer) to visit, and give you a couple of hours off.

    Are you OK from the right hooks? How do your kids feel about you getting hurt?
    Take care Wendy.
    Love Helen
  10. mel

    mel Registered User

    Apr 30, 2006
    Hi Helen
    Funnily enough my hubby and I were talking about this last night.....I'm going to try and arrange some respite for a week in August when the kids are off school....we hadn't planned on taking a holiday this year (too much decorating etc to do!!)but it would be so nice to have some quality time with Nick and the kids...
    I'm fine,thanks,from the right hooks but I'm going to have to admit to the social worker I was about an inch away from hitting her back!! That might speed up the daycare place!!
    The kids hate the violence....and guess who witnessed it again???Yes...the youngest.....they find it very hard to love her at the moment....and the more all of this happens the more I miss my dad and the more I wish mum had gone first....Awful or what?After yesterday's escapade mum was nodding in her chair...must have been worn out...I found myself thinking that I wish she would quietly slip away.....:(
    Sorry ...feeling a bit low this morning...but will put on a cheery face after my third cup of coffee and see what today brings!:)
  11. Amy

    Amy Registered User

    Jan 4, 2006
    Oh Wendy,
    Well done admitting to us that you were only an inch away from hitting her back; you need to get support; get onto the social worker asap - I mean it.
    Wendy, you may not like this, but I am going to say it anyway; maybe you should be looking for fulltime care, if the violence cannot be curbed. You are only weeks into this, and already your relationship with your mum, and your kids relationship with their grandma is beginning to suffer. My boys are the same age as your children (my youngest is 12); your kids need you - are they in the middle of AS and GCSE's, mine are? If you could get mum into care nearby, you could still have lots of contact, but your family would still have their own space.
    No wonder you are wanting mum to slip away - you are being stretched in all directions. Wendy, I know that you want to give this a go, you may succeed in caring for mum, but at what cost to your health, and your family? You won't get this time back with your chidren.
    Had that third cup of coffee yet - too early to start on the vino!!?
    Talk to you later.
    Love Helen.
  12. shauny

    shauny Registered User

    Oct 27, 2005
    north-east england

    Hi Wendy, im a social care worker for the elderly and i use talking point as a guide/forum for my day to day work, academic research etc. I emphasis to all families i deal with who look after my clients with alzheimers to have a regular respite regime. I currently have 7 families who do this i strongly urge you to do likewise so u should contact your allocated social worker & discuss. Take care Shauny.
  13. mel

    mel Registered User

    Apr 30, 2006
    Hi Helen and Shauny
    Thanks for your mum's assigned social worker only works wednesday and thursday so I will speak to her then......
    I really do value your advice and I am taking it all in.
    My brother is coming up to visit mum on Thursday and stopping overnight so I'll talk to him as fact hubby's going to put his two-pennyworth in I'll let you know how things go
    Had a reasonable day today...mum only wanted to "go home" once (at bed time) and I persuaded her to go to bed instead!
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hi Kym

    Think also about the possibility of your mum needing to be secure in your home, i.e. if she starts wandering you will need to ensure that there are permanent locks on all your door and notify emergency services on how to get access, and get access yourself. Every sufferer is different, but there is now way we could have coped with my mum cos she goes to bed at 11 p.m. and is up again at 1, cooking, cleaning, washing, ironing, well there would be no way she could do that in our home (she wouldn't be capable of operating the equipment), and would be a very lonely lady, cos she would have no company throughout the day other than us, and there is a limit to how much conversation we could have with an old lady who has no conversation. She is much better in a Care Home where she can talk rubbish to people who talk rubbish back and don't care as long as someone talks to them.

    Hope this helps, and much love,

  15. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    Ashford, Kent
    Hi Kym

    I am new here, and facing similar problems with my dad.

    My parents have lived with me 5 years. My mum had kidney failure, dad dementia. Sadly, I lost my mum 2 weeks ago. I am ashamed to say I gave her a hard time for losing her temper with my dad and could never quite get to grips with why she was so annoyed with his lack of memory. It's only now, I realise she was hiding the fact that his illness is far more progressed than she let on (he thinks my husband is trying to poison him). My mum never told us because she thought it would hurt our feelings. Of course, my guilt at moaning at my mum when she used to say my dad's illness got her down is at an all time high.

    A common theme on here seems to be that parents hide the worst from their children.

    I still have no plans to put my dad into any form of care and am determined to battle on until I really cannot cope any longer.

    His irrational times make it very difficult, and I am really going with 'one day at a time'. I know my situation is not quite as advanced as yours, but thought I would share my plan of attack against this horrible illness.

    I'm trying to give him as much independence for now as possible (just bought a GPS tracker but still scared it will run out of power when he is out). I've had him reassessed for medication to make sure that we are on the easiest solutions (even if those are not the cheapest for the GP to prescribe). My biggest concern was insulin, which I have managed to have changed so I can administer one dose a day.

    I'm trying to decide right now whether to return to work or not (I am on compassionate leave at the moment). I am thinking my fears for him will be too great, and I just won't settle at work.

    Once things get too much for me at home, I will find a local care home, but collect him and bring him home for the evening for dinner, and let him stay here at weekends. A sort of respite in reverse for him if that makes sense. Of course, when it all gets far too much, then I'll have to hang my gloves up and just visit the shell of the person that was once my dad.

    I know it won't be an easy path, and I have two young children aged 7 and 13, but with my husband, my children and a lot of love and patience, I am determined we won't let this illness bring us to our knees.

    I am utterly determined that he will stay with us for as long as he can.

    My heart goes out to you, really it does because this is a vile illness that robs us of the people we love.


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