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  1. #1
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    Feb 2006
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    Default What to do about mum!

    90 year old mum lives with my sister in a pretty luxurious situation. She has her own beautifully renovated fully kitted out granny flat with all teh mod cons including a pool and spa outside her bedroom and a specky view across the Canning River, but she is not interested in any of this.

    Mum has medium level dementia, ie, cannot deal with money at all, puts the electric kettle on the gas stove and then asks me to fix it, repeats the same old stories over and over, does not know what day of the week or even roughly what the time of day is, forgets to eat and drink, cannot watch TV (limited english language ability and the plots go too fast for her) she does not read, and finds it hard to sit still for more than 5 minutes.

    At times mum suffers from strong paranoia usually about various people stealing her stuff, especially her garden plants. Usually she just misplaces stuff, she doesn't really know what she has or where she put it all. Mum has never had any close friends, still knows who her kids and most of her grandies are, but she cannot remember her own nieces and nephews. Mum knows she has something wrong with her head but blames it on medication, her other trivial (for a 90 year old) health conditions, or the neighbours, or my sisters who she says mistreat her. Instead they are super nice to her

    The sister mum lives with provides all meals and Mum eats well, usually with my sister or other sibling when we drop around. Mum is quite physically fit as she goes up and down the stairs to my sisters area of the house many times a day.

    The only thing mum is interested in is gardening, which she does up to 8 hours a day even when it's over 100 degrees in the shade.
    This involves:
    - draping rags over many of the plants to reduce sun damage.
    - removing the odd weed (its lucky one even gets to raise its head), removing dead heads and leaves,
    - repeatedly rewatering the same patches of garden
    - forgetting to turn off hoses.
    - removing the rags from the plants when the sun goes down
    Rags draped over plants aside, the garden is indeed very nice, if somewhat waterlogged in parts, because it is also fully reticulated and mums watering is a tad sporadic. As result my sisters water bills are OTT.

    Two weeks ago mum dropped a small pot plant on the inside of her ankle and split the skin open and had to have 11 stitches and was told to wear a moon boot and to keep her leg up and do nothing. The moon boot lasted an hour and she has been sneaking off to the garden. This morning my sister went out to do some shopping and came back to find mum watering the garden with her leg in a plastic bag, and sweating profusely under the 100+ degree sun. Mum claims all her children are useless because otherwise we would be out there helping her water the garden. We cannot reason with her as she is very determined and it usually ends up in a yelling match.

    We have mum booked in with 6 nursing homes but she gets very dark looks on her faces if we talk about this.

    In the mean time should we
    - let her keep watering till she falls over and does a hip, or worse?
    - remove the hoses from the garden
    - other?

    If it were up to me I'd like to go round there with a flame thrower and torch the garden but sis would complain and all mum would do is roll her sleeves up and then ask to go plant shopping.

    All my siblings and I have been to a 2 day "living with dementia" workshop. Interesting and helpful in small ways but they could not help much with mum's specific situation.
    As usual it's even more complex than I describe above - just venting really

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  3. #2
    Join Date
    Dec 2005
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    South Australia
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    Default

    I know where you are coming from and how you feel, 4 years ago I had to make the decision to put my mum in a nursing home, no siblings to look after her I came home twice and she was on the floor,( yes she had a medic alert did not use it) A couple of times she overdosed on meds, she was Hiding them, went to cook lunch forgot all about it and nearly burnt the house down, for various reasons I was unable to stay with her 24 hrs day.
    It was a very hard decision I know she is better off but for some reason I still feel guilty.

  4. #3
    Join Date
    Apr 2005
    Location
    Nerang Queensland
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    62
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    Sounds familiar Bob. My mother is 93 and was still living at home on her own till last week. She has had a few falls now and a mini stroke, and the electric kettle on the stove sounds familiar (although for her it was in a microwave), so my sisters are staying with her in turns. Unfortunately at that age they can't handle change and still hope to pass away in their sleep.

    The last friend in the street passed away 6 months ago and her old house next door has been demolished for a new mansion to be built. After her falls and due to the noise of demolition we have got her to agree to moving into a home for 3 weeks, although we have told her it is for a rest to recover without noise, hoping after 3 weeks you might get used to it and able to discuss living there more permanently.

    Hope you can come up with a solution that works, certainly not easy.
    Neil
    ____________________________________________
    Every day presents an opportunity to learn something new

  5. #4
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    Feb 2003
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    used to live in Sydney, now it's Canada
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    64
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    Hi Bob
    can sympathise
    does your mum have an advance care directive? Or has her dementia advanced too far to prepare one?


    as to the water bills...
    if mum is happy pottering in the garden, perhaps install flow limiters in the hoses she has access to. She'll spend the same time watering, but will use less.
    regards from Canada

    ian

  6. #5
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    May 2007
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    I sympathize Bob, but unfortunately it is a one way street. It can only get worse. I have been down the same path and thankfully it is now over. I have no practical advice, I was unable to control the final phases. I had got the council home services involved to get my mother assistance with her living conditions. On the first visit they realized she needed much greater assistance than just home help and got an ACAT assessor to intervene and eventually the Public Guardian took control.

    The dementia my mother suffered from was progressive. I think it started many many years before, perhaps even when I a young adult. From my point of view it didn't change her personality, it just greatly magnified certain (and unpleasant in my case) aspects of it. It required medication and professional staff to manage.

    If the dementia is Alzheimer's based and you haven't got to the night terrors phase yet, prepare yourself for some harrowing evenings. We found low care dementia facilities, although they looked better and more homely than other care, were understaffed and perhaps profit driven if not outright criminal in their financial dealings.

    It wasn't until my mother was in a high care nursing home that things started to improve, but only on a relative basis, there was no repair of mind.
    Franklin

  7. #6
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    Feb 2009
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    moonbi nsw Aus
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    Oh Bob!!!!! I can sympathise completely with the situation. I have no solution just a knowing of what you are going through. Mum went into a nursing home at the age of 62. I will turn 64 this year and a little paranoid of forgetting things. My problem was that we live 6 hrs away from the nursing home and didn't visit as much as I likes. She died in hospital care at 72. I have a burden of guilt over Mum's situation as well as Dad's. He had a number of strokes that took away his ability to speak. I found it extremely distressing.
    Every case is different so its not a simple solution. Your sister needs a medal for looking after your Mum. It must be hard on her as well. I wish I could wave a magic wand and stop dementia from the face of the earth to let people get old gracefully and depart in complete peace.
    Just do it!

    Kind regards Rod

  8. #7
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    Jun 2003
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    N.W. Melb Suburb
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    You have my thoughts, Bob.

    I rarely comment on posts in the "Health" forum, but I will offer a little advice based on my experience in both my professional and private life.
    It is very distressing to see a parent in that situation but you must not let it get to you or your sister as you cannot change it and all too often the carer/s fall over first leaving no options for care then. That may sound harsh but my father's condition (physical not mental) was getting to me until I realised that I could not change it and had to accept and live with it as distressing as it was.
    I presume that you have had an ACAT assessment done, at least for respite care. Perhaps you could try respite care for a couple of weeks every 3 months or so to give your sister a rest. Tell your Mum that she is going for a holiday. Often, when experiencing respite care, the Patient (sorry could not think of a better word in this context) likes the fact that they have others around them and often are then prepared to move. They can sit and tell the same stories day after day and nobody is any the wiser. You and your sister then know that she is being cared for and you are not likely to come home to a broken hip or worse. I realise that good aged care facilities are sometimes hard to find although they are getting better due to Govt regulations.
    It is not an easy decision to make but you should not feel guilty if you have done it for the right reasons. We were very lucky as my mother (fortunately not demented) decided that she would be better in low level care at 93 and my father-in-law told my wife that he needed care. He developed dementia but fortunately was not aggressive with it.
    I hope that might be some help. Take care
    Tom

    "It's good enough" is low aim

  9. #8
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    Feb 2006
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    Quote Originally Posted by ian View Post
    Hi Bob
    can sympathise
    does your mum have an advance care directive? Or has her dementia advanced too far to prepare one? .
    Yes we have a full EPA.


    as to the water bills...
    if mum is happy pottering in the garden, perhaps install flow limiters in the hoses she has access to. She'll spend the same time watering, but will use less.
    Normally a good idea but right now she should not even be standing up. If she recovers that means she will probably spend even more time in the hot Perth sun.

  10. #9
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    Thanks for the feedback guys, much appreciated. I am quickly learning not to feel guilty about anything because whatever mum

    On the plus side I have 6 siblings in Perth, one "not very mobile" sibling 3 hours away, and two siblings interstate.

    Mum finds it hard to handle more than a few people at any one time.

    Apart from the "not very mobile" sibling we take turns in giving my carer sister a long week end break once a month, even the 2 interstate siblings help with that.

    Several times a week one of the siblings drops in for half a day (so that carer sister can get her shopping etc done). We try to distract mum from the bloody garden usually with no success, as she expect us to get on the end of a hose. Sometimes carer sister calls one of us to say she is on the end of her rope with mum and one of us will drop over and give sis a break.

    Mum is not very enthusiastic about leaving he "flat" especially in the evenings, because someone might steal her plants or stuff. Any visitor to my carer sisters place that complements her on the garden are accused as someone who will steal plants. My sister has to prewarn any visitors, "Don't mention the garden"

    We take turns once a week where one of the siblings and a few of their family will have an evening meal with mum at her flat. This also allows my carer sister to escape for an evening. This is mums opportunity to accuse the other siblings (especially my sisters) of being thieves and mistreating her which mum repeats over and over like she does with any stories. The only way to escape this is to get mum to talk about the old days, which is interesting enough but we have now all heard these stories dozens or even hundreds of time.

    Which ever siblings and grandies are free catchup on Sunday arvo at my sister carers place. Mum finds that gathering hard to handle if there are too many of us and often drifts away into the garden.

    The other problem is she never asks for advice and ignores whatever is offered, even from the doctors.

  11. #10
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    Bob
    I have just read your post again. Is there an aged care facility where they cater for her native language, customs, etc as that often helps?
    I should have added in my previous post that you must remember that parents have had a lifetime of experience in manipulating their children. My sister reminded me of this as she had been through it with her in-laws.
    Tom

    "It's good enough" is low aim

  12. #11
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    Quote Originally Posted by Chesand View Post
    Bob
    I have just read your post again. Is there an aged care facility where they cater for her native language, customs, etc as that often helps?
    Yes and we also have her name down at this facility but it has a long waiting list.

    Because of the language issue we have even taken mum to see this facility. As we entered mum met someone she knew and had a chat with them. Then as we toured mum met and spoke with several residents and also staff. I don't think mum realised she was even talking in mostly her native tongue. Actually she talks a mix of her native tongue, her native dialect with a few english words thrown in. Even full native speakers can find it hard to understand mum.

    As we left the village mum encountered another woman (lets call her "Mary") mum has known for many years. The woman was also a resident and they had a long amicable chat, lots of smiles and a few laughs etc. As we drove away away I asked mum what she thought about that village and she said, "It's horrible - I don't know anyone there". When I asked, "What about Mary>", mum said, "She doesn't count as I don't like her".

    I should have added in my previous post that you must remember that parents have had a lifetime of experience in manipulating their children. My sister reminded me of this as she had been through it with her in-laws.
    Yes I agree and mum is a master at this. Mum was never able to threaten us financially as he never had or has any money. Carer sister only lost her husband a couple of years ago and is very kind and patient to mum but two of the other sisters (one is an ex nurse) are a lot tougher. Of course these two sisters are the top of mums complaint list to the other siblings! They have been accused of stealing her jewellery, clothes and linen, as well as plants. I have been accused of taking their side.

  13. #12
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    Sep 2013
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    Jarrahdale WA
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    Mate, I feel for you.

    I personally consider myself extremely lucky to have had two parents that took all their marbles with them when they moved on... I've seen the alternative and don;y like it.
    The one odd thing was that Mum rotated her "favouritism" between my two (much older) sisters and I. We still don't get that to this day.

    My wife had a stepmum whose mum had dementia and the stepmums greatest fear was going the same way as her mother, and she did.

    Luckily(??) it was quite aggressive so she soon got to a place where she could be placed into full time care with no pushback from her.. We lost her last year.

    This post is not much help I know, but focus on the good things and times and dig deep into your well of grace and you'll get through it..

  14. #13
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    Thanks David your response is much appreciated. I normally wouldn't air this sort of thing on these forums but I have run out of vent space at home and with friends. The Workshops I went to indicated that it was best to get this stuff off you chest and as there are such a wide range of experiences on this forum I though I would give it a try and the responses have all helped in a small way.

    Sometimes I hope for mums dementia to become more aggressive which might put us both out of our misery.

    Mum is deeply unhappy, probably the most unhappy she has been in her life which includes, as a teenager having to hide for weeks on a farm from retreating Germans and advancing Allied troops in WWII, working for 8 years before she got married in a tannery to keep her brothers and sisters fed, and then, with 10 kids under 14 years of age, dad suffered a major industrial accident and was off work for 19 months. She is as they say a tough old bird but this condition is really hit her hard.

  15. #14
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    Oct 2002
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    I lost my mum to dementia, so I sympathise!
    Others have covered most of the points, but I would just like to suggest that instead of

    "The other problem is she never asks for advice and ignores whatever is offered, even from the doctors."

    You might phrase it as "her brain is so damaged that she is cannot accept or benefit from advice."

    One of my biggest hurdles was getting my dad to stop expecting rational behaviour from mum. If someone has a broken arm, in a cast and sling, we adjust our expectations and don't think they should use it. Because brain degeneration isn't visible, it can be hard to really accept it, and you keep thinking that the person will behave as rationally as they have previously.

  16. #15
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    Oh, I can empathise with you. My MIL is nearly 91 and with dementia. We moved her from Melbourne nearly 3 years ago as all her friends there were either dying or not allowed out anymore and she was always crying when on the phone! She has no interests, no social skills anymore and made no friends while still living independently in a beautiful retirement village (about 1k from our place) with over 100 other lovely units and neighbours. My hubby and I both retired over the past 16 months and he now spends every day doing something with her otherwise she would have no social interaction at all. And she never remembers to take daily medication - ever - without a phone call or visit to remind her. Hubby has one useless brother who lives a few hours away and does nothing. She can't read past page 6 of a book and can't remember how to change tv channels (she wondered why the tennis court had Auckland printed across it when the Australian Open was on - she was watching a very old replay on some channel). The only thing she likes doing is spending (big) money on clothes so we keep her away from clothing shops. Oh and laundry - she washes all day every day and has 4 indoor clothes horses always full. Maybe we are avoiding the difficult discussion but at the moment we are taking the easy path and just coping with one day at a time. Except for 3-4 different types of cancer and beating them all she is very healthy but not happy.

    Unfortunately this is probably something that most of us will experience ourselves or with close loved ones in the years to come. At least it has our adult children talking about it with us now should the same happen to my husband (it is certainly in his family) or me. We were hoping to do some extensive travelling overseas now that we are retired as we never really did much when younger due to working and family. It is not likely to happen for a while now though and I feel like our lives are on hold - except for my woodworking and hubby getting back into golf after many years away from it.

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