1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Reading through various messages on TP, and especially Norman's thread 'Tears' has made me wonder how many times we have all refused offers of help, or equally wished that someone would turn up and volunteer to help us out.

    Most of the time we don't want to impose. Why do we hesitate to ask for help or a favour? Most people get a great kick out of being needed. Trouble is: there's horses for courses, and whilst I might be ok with my neighbour fetching a fresh loaf of bread, I would be less happy for her to be around when it is obvious that my husband needs 'personal care'.

    Very few people know us (and AD) well enough to make the right offers. Would anyone be willing to share their ideas in this thread:
    a) the most practical offers of help they have received
    b) a wishlist of things they would be glad if friends/family volunteered for.

    My most practical offer of help came from a true friend. We often used to spend time together, shared meals at each other's houses, as well as special occasions such as birthdays, anniversaries etc. Since my husband has been housebound, they have been visiting us, and I have not minded preparing food. Last December my friend said "We would have loved it if both of you could have come to spend New Year's Eve at our house, but we know that this won't be possible. We have an alternative suggestion but you are free to say 'no' if you don't think it is practical....." This is what they did:
    They came to our house late afternoon, armed with several boxes of food and utensils. They took over my kitchen, prepared the most wonderful Indian meal, ignored my husband's sundowning, and we had the most uncomplicated, memorable evening with food, drink and many a laugh. I was relieved of kitchen duties and able to concentrate on hubby, and I will never forget the effort they made to ensure that we had a special New Year's Eve!

    My wishlist:
    * For someone to mention when they are off to the supermarket, in case I am low on something (we live in a village and I only make time to drive to the shops once a week)
    * For visitors to engage in a 'chat' with my husband when they are here, even if it turns out to be one-sided and they only talk about the weather/garden/etc.
    * If someone is really willing to keep my husband company while I go and run an errand, could they please offer with a specific time/day, so that I can say yes/no and work around it? If they said for example "I could take Fred for a walk on Saturday morning" (or similar), I could then make a positive response such as "great, that would give me time to take the garden rubbish to the tip". I could then be organised to make the most of that 'hour' (or whatever), and that would be 'real help'.
    * For friends to persevere: not every visit is comfortable and a success, as the moodswings of AD sufferers are unpredictable. I hesitate to invite people, as I worry that a pre-arranged time might turn out to be awkward if hubby is agitated or needs 'personal care' etc. However, I am always happy for people to drop in, bring us a breath of fresh air, a bit of their world and their lives, as long as they accept that we cannot always be the perfect hosts these days .....

    OK. I'm done. It's everyone else's turn now - that's if you haven't all fallen asleep over my rambling lines .........
     
  2. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My Mum's in a nursing home now so her needs are catered for, but what I would really like, would be for other people to visit her occaisonally. Also it would be great if some one would change the water in her flowers, and water her pot plants if I couldn't visit for a few days. The nurses do throw the dead flowers away, but one day I found a vase half full of stale water! I usually go every other day, but sometimes it isn't possible to fit visiting in around work.
    Mum used to enjoy playing Scrabble and Upwords and I've tried playing it with her, but I'm not very good at it, so I find it quite hard to help her, as she can't really play without help. If a keen word game enthusiast could spare an hour, that would be nice. Mum also likes animals and babies and children. I take the dogs to see her, but we haven't any grandchildren yet. A family to visit her would be lovely.
    My MIL is very ill and not expected to survive the weekend, so there will be the problem of knowing what, if anything, to say to Mum. Since she apparently keeps my late father under her bed, maybe it will be better not to say anything at all! She also goes to the pub, goes out in a boat and goes to another hospital in a white van and sleeps for eight days, so reality isn't present in her own little world!
    It seems that friends and relations don't think it is worth visiting because "She probably won't remember who I am anyway!"
    On Mum's 80th Birthday party we invited about 25 guests and Mum said, "They all seemed like very nice people!"Well, it wasn't surprising as they were her friends, neighbours and relations. I wish people would visit, even for just half an hour or so. The home is quite conveniently situated for local friends. If some one even just rang to see how she was, it would be better than nothing.
    Kayla
     
  3. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    A phone call away....

    Know what you all mean about the 'offers of help' ...

    "Why is it that when AD (or any other terrible crisis) sufaces people 'go into their shells', and cease to call in / telephone no longer?

    Why are so many of my family in denial regarding AD?
    Why don't they ever believe what I am telling them?


    I think 'they think' I'm being 'a bit of a woos (sp?)' and not able to manage things without extra help.
    (This is in reference to a carer coming in to help out).




    I grew up as a 'carer', and looking back I had no childhood AT ALL... BUT then again I really did not know any different.
    (Grew up in the country .... never had a neighbour till I left home !!)


    Obviously, I knew that not everyone had to do what I did, it was just part of 'me' and what I had to do.
    Never had much money, possessions, toys etc.... Didn't care at all.

    What I did have was 'time out' going for walks with my uncles and their dogs.
    They taught me alll about wildlife and plants ... and life etc.
    That meant more to me than any 'fancy new toy' etc.


    Family seem more concerned about 'keeping up' with their 'so called friends', than popping in to see us.
    Family have become 'mean' in every way.
    (Maybe they ALWAYS were, only I can see it now???).


    The smallest of guestures / things .... mean the greatest don't they?


    DaisyG
     
  4. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daisy,
    a) the most practical offers of help they have received
    b) a wishlist of things they would be glad if friends/family volunteered for.

    So what are the things that you would put on your wish list?
    Love Helen
     
  5. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Wish List ....

    Little things like ...

    1) I'm just going to the supermarket.... can I get you anything?
    (This would mean thay HAD to call in though).
    Ggrrrr.... Husbands brother is a deputy manager of a supermarket !!



    2) Offer to watch over/care for husband when I get my hair cut. (instead of
    Crossroads).
    (This would mean they 'MISS' valuable SOAP time for themselves)

    In the 'past' we have actually been eating lunch at the table.... and MIL has
    heard 'neighbours' come on on the TV in the other room .... and excused
    herself .... (SHE MUST NOT MISS IT ... OR SHE'LL NEVER BE ABLE TO CATCH
    UP)..... !!!!
    It's not just MIL that love SOAPS , it's the SIL's too ......




    3) Offer to sit/watch while I go out for lunch / walk etc .... (instead of
    Crossraods).



    4) THIS REALLY SHOULD BE MY NUMBER 1
    LISTEN TO AND BELIEVE ME WHEN I TELL YOU SOMETHING.
    STOP SAYING THERE 'IS NOTHING WRONG' WITH HIS BEHAVIOR
    (THEY THINK IT IS PARTLY 'BOREDOM' !!!).



    5) Understand that when you 'do visit' (ha!) , and hubby falls asleep
    he is NOT being 'ungreatful'.... brain is just overloaded.



    6) If we are visiting 'you' and hubby asks for help ..... DO IT !!!
    (This is in reference to when he asked for help getting up and down their
    outside steps ..... and was told ' "NO DO IT YOURSELF !!"



    7) One phone call from each family member every week or so...
    Hi, how you doing?



    I'll have to think over the week end of what else I would like.....


    DaisyG
     
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hiya, NuttyNan, what an interesting, thought-provoking thread!

    First on my list would be that people ring/visit mum more. She doesn't have many friends or family left (for various reasons!!!) but you can imagine how I bite my lip when they ring ME to see how she is!!!!! I know she can be 'hard work' sometimes and not always lucid enough to participate in a proper conversation... but they can brighten her day just by having made that effort, giving her a little attention and letting her ramble on to them .... (I don't mind if they ring me because they've already rung her and are concerned and want the REAL up-date from me - it's when they ring me INSTEAD of her!).

    A wish-list is a must! Now all we need is a franchise on some magic dust to work at making some of them come true!!!!

    Love, Karen (TF)
     
  7. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Not on my own then ....

    I felt quite selfish after I had posted this thread, but I am glad I am not on my own ....

    Tina, your attitude towards your auntie makes you a carer, and the world would be a better place with a few more people like you: people who don't just offer help, but actually provide it, too!

    I have two friends who ring often and always start off with the question "are you able to talk?". And when I have to curtail the conversation for whatever reason, they are not offended when I am unable to ring back until the next day or so ......... It becomes a chicken-and-egg situation: I feel able to tell them more about our ups and downs, they in turn understand better what's going on, etc. etc.

    Karen - the stuff we could all do with that magic dust ;) ...............!!!
     
  8. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I never refused offers of help, was grateful for every visit, phone call, letter, card or email, but was very reluctant to ask for help, everyone being too far away and/or too busy, or old and ill themselves. Physically very little help was needed. I was disappointed that so few of my mother's friends and relations did make any effort. (All those people who only appeared for the funeral and then disappeared again as if by magic.) I tried hard not to answer back when people came along for short visits and thought that gave them the right to start bossing me around, or if they thought their experience with an elderly relative made them an expert on mine who was so different.

    Lila
     
  9. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi everyone,

    great thread Nan
    i think i can empathise with everyone who has posted, even though im not my mums sole carer thats my dad, i tend to do everything else for them both,
    like pay bills, food shopping, clothes shopping , day trips, hair appointments, just for once i wish someone would, take them out or do theyre shopping or even call in to see them, to give me a break,
    people phone me to ask how "mum" is why dont they ring them?, wheres all my mums friends who were going to do so much with her when she recovered from her heart attack, when you see them in the street they say tell your mum i was asking about her, :eek: i'll call in , when is it conveniant? you never see them again.
    it makes me so angry:mad:
    and when we are out why do people always ask me "how is she" as if mums deaf and cant hear them.
    sorry i can feel a rant comming on:rolleyes:
    better go before i get carried away, and say what i really mean:D
    take care everone
    P.S
    im going to the shop anybody need anything:D
    xx
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Bread and milk please Donna.
    Helen
     
  11. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    "I was disappointed that so few of my mother's friends and relations did make any effort. "


    I'm finding that now,Lila....since dad died in February last year all the family have disappeared!...."why?" I ask myself....they all know the score....I don't ask for much but a phone call/email/letter/postcard(mum would love a bright postcard) every so often would be nice......
    Wendy
     
  12. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    People would phone and ask "how is she?" so I'd pass the phone over to my mother, (after all it was her phone and her friends/relations), but they would often say they couldn't understand a word she was saying. (I could usually understand her, but then the others thought I was just imagining or inventing things.)

    Then there was "we might try" to come round ... I hated that, but of course said oh yes, do ... "might try" is such a nuisance, it means you have to get ready for people without knowing whether they are going to turn up. And sometimes it meant getting ready for visitors without telling my mother as otherwise she'd get into such a state of anticipation and disappointment, which meant not eating and not settling to sleep.

    People offered to do shopping, but we didn't need that, I could order loads of stuff on the Internet, and could leave her for the short time needed to get to the nearest shop, in fact I often needed those shopping breaks myself. And sometimes when she was well enough she went shopping herself with my brother or sister-in-law.

    Lila
     
  13. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    My niece has recently been diagnosed with MS, and was told by a specialist nurse that she must learn to ask for, and accept help, but there were 4 types of offers:
    'I wish there was something I could do' means don't even bother to ask for something.
    'Let me know if there is anything I can do' is not particularly good, but ask that person to call in two weeks time to see what is required in the way of help. If they call, then take up the offer.
    'Is there anything I can do' pretty good - say yes, and offer a choice of two different things, so they do not get asked to do something they would absolutely hate.
    'What can I do' - the best and most sincere offer. Tell them what you need, and they will do it.
    On the whole I think a lot of people are quite happy to give help. I needed my husband fed one evening, when I was away, and found that a neighbour was returning from holiday that morning, so said I would make a fish pie but please would she collect it, and husband, that evening. All worked out fine, without anyone feeling hard done by.
     
  14. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Yesterday Mum said that she needed some new bras so I looked in her drawers at the NH and saw all her clothes neatly folded or rolled up, tidily in groups. One day she had been upset and the cleaner sat with her for 10 minutes trying to cheer her up. These simple acts of kindness and going beyond the job, bring a warm glow to the heart. It is maybe easier to notice what isn't done than what is being done. I must try to remember to always be positive and look on the bright side of life.
    Kayla

    ps, I can never find anything in my drawers because I'm so disorganised!
     
  15. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    What I really need is a neice (or three!) like Tina. You are not an "outsider" Tina, you are right in there with us.

    Hugs

    Dick
     
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    The most useful people were my mother's younger sister (retired physiotherapist, with experience of working in care homes, but she was 90 miles away and was beginning to find the journey too tiring), and my mother's next-door neighbour, who had looked after her own aunt with dementia for 23 years at home, including when her 3 children were young, (but she has several disabilities of her own and had another fall and another broken bone a few weeks before my mother died). Both 80 this year, so of course I couldn't expect them to do much.
     
  17. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    'Scuse me! Can we fight over her? :D - could do with a sister/cousin like that!
    (Hugs, Tina!!!!:) )

    Actually Dick, isn't this the beauty of TP? Feel like I really have a 'virtual family' that can offer - at least in emotional support - what my mother's 'good-for-nothing-unless-there-is-something-in-it-for-them-including-their-own-ego- family' can't seem to be bothered to do.....

    How you fixed for 'virtual nieces'???? Queue starts behind me!!!!:)

    I have to say without practical help from mum's wonderful neighbours (as well as their far better understanding of mum's (and my) situation than 'family' who deign to call every other month)... mum and I wouldn't be 'managing' ( I hesitate to use the word 'coping') as well as we are just now..... can manage shopping, cleaning... can't be relied upon to be perpetually strong and supportive 'sole entertainer'.....

    Sorry, going on....

    Love, Karen (TF)
     
  18. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Karen, I am first in the queue - the fight is on.

    You are right, TP is our virtual family, the beauty is we expect nothing of oneanother except understanding and what we actually get is emotional support, understanding and a very special relationship which trancends genda, age, nationality, sexual orientation, religion and so on.

    Thanks all

    Hugs

    Dick
     
  19. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Mum and Dad had so many friends and it was standing room only at my Dad's funeral, but after 15 months, Mum's visitors have dwindled down to immediate family, a cousin and the odd friend. I know she can't remember when someone's been in to see her but it still saddens me to think that no-one seems to care now. Her and Dad spent so much time looking after elderly relatives and being there for ill friends - it seems so unfair.

    Libs
     
  20. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    It certainly is sad,Libby....perhaps the illness is just too scary to anyone else....having said that,two of my couisins know all about it.....their mum was a sufferer too!!! so where the hell are they???? I was going to email them all tonight to give them an update on mum.....(they knew when she was moving in but they haven't even asked how the move went) but I decided to log in to TP instead....Glad I did.....GRRRRRRRR...I feel SOOOO angry!!!!!:mad: :mad:
    Wendy


    Phew! That feels better!!!
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.