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.

The best on offer is sorry

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lonestray, Nov 13, 2006.

  1. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Hi fellow carers. At the fourth time of asking about a flu jab for my wife I'm told they have my wife on the list and will get round to her in time. This afternoon I visited the surgery less then five mins walk from our house (wife asleep). I was told there was a clinic to-morrow. As my wife is four years into the final stages and it's only possible to dress her while laying on the bed due to her being rigid. Unable to speak or move for the past four years I believed they expected me to take her to them. How did they think her clothing could be removed whilst sitting in a wheelchair? Maybe they might cut them off like they did in A&E when being resustitated in April. I told the district nurse that no one visits us so how can you know what her condition is? No one followed up after her being rushed to A&E for the second time this year on the 5th Sep. Her response: "Sorry we don't do check ups on patients any more due to limited resources!" My answer: "Why are you people not more honest and say 'We don't care about people in your wife's condition?' I have long acepted it as fact." It's easy for her to say "But we do care" words come easy. It's fearful growing old no wonder Alz suffers wish to get back to homes where they once felt safe and cared for. Sorry I'm upset it's at times like this I wish all these support organisations would just shut up and start acting. God bless Padraig.
     
  2. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Padraig

    I really do know how you feel............the person i loved could not talk, see, move or think for himself and it makes you very, very protective, because at the end of the day we know them so well, they don't need to be able to talk as we know what they want and need, without them having to say anything!..................but people who don't know them seem to think that because they can't communicate, their needs are a lot less, so we spend most of our time fighting for their rights and that gets very tiring emotionally!

    Your wife is entitled to have the flu jab as she is classed as vulnerable (and as her main carer, you are entitled to have it too)..........try telephoning and ask to speak to the doctor (if he is busy, he will ring you back) and explain the situation, i'm sure your surgery can arrange for both of you to have the jab!

    Best wishes
    Love Alex x
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Padraig,
    So sorry that you are feeling down.
    I think when it comes down to it, professionals are doing a job - even when they appear to care, it is a 'professional caring'.
    You and your family are the one's who know what it is to really care for your wife -no-one else can love her as you do - you are her champions.
    Follow Alex's advce and phone the GP - explain that it is not possible for your wife to get to the surgery - the nurse will come out. With mum and dad I have learnt that you have to ask, to get anything - information, aids, are not offered.
    Padraig, you do so much for your wife - who looks out for you?
    Take care. You know that it is OK to moan and get upset here; we know where you are coming from.
    Take care.
    Much love, Helen
     
  4. susiewoo

    susiewoo Registered User

    Oct 28, 2006
    82
    Bromley Kent
    My Dad has the district nurse come to the house to change his catheter and I asked very nicely if Mum and Dad could be given their jabs then....I was really struggling to get them to the clinic at the restricted times offered. I was overjoyed to find out that the nurse has been in and given the jabs..how nice when someone listens and acts rather than putting up barriers.
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Nov 14, 2006
    Last edited: Nov 14, 2006
    That must be way they do not come around to you .

    They trun up every year at my home district nurse without me asking , just to give mum her jabs

    why not ring them for your wife sake , so they come around ? if you put aside any bad feeling you have for the district nurse in the pass .
     
  6. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Hi fellow carers am I missing some thing here? I have phoned three times in as many weeks about the flu jab. Now I'll await their visit. I'm aware I'm entitled to it as I'm 75 but have to admit to only having it once in the past 15 years, but then neither did I have colds in that time. Unless one could go through each day with me 24/7 year in and year out for the past years since removing my wife from a NH will they understand the small things I would like. It's just only me caring each day from 0500hrs each morning till bedtime. It takes extra time to care for her because of her body being stiff. The one break I get is a short visit from our daughter twice a week when I can sit and have a conversation. She'll never know how much it means to me.
    Whenever I phone anyone I'm always asked: "What can we do for you?" I reply "It's not a case of what you can do for me, but rather what I can offer you". It's because of the lack of intrest I decided to go on the internet in the hope of being of help to others. After all I have seen my wife through nearly 12 years of Alz and travelled along almost of the same road some of you are about to embark on, have embarked, reached the end, and while we're still going in spite of the mess the system put us through. All I would ask is to be given a good anual check up, and when I require treatment I'm not made to wait. This would make sense because should I become il,l it'll be more expensive employing staff in to wash, feed and change my wife's pads. It would be nice if someone phoned, say once a week to ask how she is, but I expect that's a step too far. When asking about the flu jab I also enquired as to what I was meant to do if she became ill "Phone 999" Has no one heard of preventative medicine?
    I was realy cheered up when the dentice phoned to say he wanted to do her six monthly check-up. I told him how wonderful it was to have a ray of light come into my day. God bless Padraig
     
  7. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Hi fellow carers am I missing some thing here? I have phoned three times in as many weeks about the flu jab. Now I'll await their visit. I'm aware I'm entitled to it as I'm 75 but have to admit to only having it once in the past 15 years, but then neither did I have colds in that time. Unless one could go through each day with me 24/7 year in and year out for the past years since removing my wife from a NH will they understand the small things I would like. It's just only me caring each day from 0500hrs each morning till bedtime. It takes extra time to care for her because of her body being stiff. The one break I get is a short visit from our daughter twice a week when I can sit and have a conversation. She'll never know how much it means to me.
    Whenever I phone anyone I'm always asked: "What can we do for you?" I reply "It's not a case of what you can do for me, but rather what I can offer you". It's because of the lack of intrest I decided to go on the internet in the hope of being of help to others. After all I have seen my wife through nearly 12 years of Alz and travelled along almost of the same road some of you are about to embark on, have embarked, reached the end, and while we're still going in spite of the mess the system put us through. All I would ask is to be given a good anual check up, and when I require treatment I'm not made to wait. This would make sense because should I become il,l it'll be more expensive employing staff in to wash, feed and change my wife's pads. It would be nice if someone phoned, say once a week to ask how she is, but I expect that's a step too far. When asking about the flu jab I also enquired as to what I was meant to do if she became ill "Phone 999" Has no one heard of preventative medicine?
    I was realy cheered up when the dentice phoned to say he wanted to do her six monthly check-up. I told him how wonderful it was to have a ray of light come into my day. God bless Padraig
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Sorry I must of misunderstood what you said ,I thought you did not want any help from anyone from the NHS , yes I do admit that we our on this journey alone and the only help we get is if we ask for it .

    My social worker, always asking me that what we can offer you to make your life easier in caring for your mother. I just tell her, what I want if she can help me she does it , if not I just have to get on with it , if you are self-funded it must be very expensive to pay for someone to come in , my social worker does phone up now and then asking how I am getting on only after I have phone her telling her my care needs have change . if not no one would ask

    Do you have a socail worker? that can push sort out the flu gab for you If they see you coping yes they just leave you to it , If anything go wrong I just phone socail worker and she does all the complaining for me and sort it all out for me .
     
  9. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Thank you all very much for your replies. What I'm gleaming is a generation gap. Can it be I think like your loved ones, we hate to be dependant on others and endevour to just get on with it. Margarita sorry I haven't a clue what self funded is, I don't have anyone come in. I'm so selfish I don't wish to share the caring for my wife with strangers. But like any parent caring for thair baby it would be nice if the NHS did the odd spot check, and not have to wait for me to make a 999 call. What do I want from the NHS? Just for once to listen, learn and stop repeating all the mistakes they made on the day my wife fell and was taken into hospital with a broken arm. I still see those same mistakes being repeated from a number of posts on here. It would be cost effective for the NHS to learn and stop spending on damage caused to patients by hospitals and NHs.
    I can't help wondering if they think it would have been better if I had let her die when she was five stone and was in such pain. Can't they bring themselves to ask how come she looks so well now? Anyone knows how I can weigh her? our daughter thinks she's nearer to nine stone! I have to lift her and I'm 10st 5lbs.
    Sorry to go on, but I've not found anyone who intends to care alone to the last breath. God bless Padraig
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Paidraig,
    whatever else happens make sure YOU get that flu shot. As your wife's sole carer and as the person in your household who is most likely to come into contact with people who might be infectious, you need to safeguard your own health.

    Jennifer
     
  11. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear Padraig,
    I have been very inspired by your posts so I trust you will recognise that what I am about to say is said with true regard and respect for your care for your wife.

    I think it is possible that your independent attitude has resulted in a general attitude among those whose job it is to help you, to say to themselves "He doesn't want (or need) any help". In an overburdened health system I expect they see your independence as a gift to themselves! One less person to deal with!

    Naturally you see it very differently. Of course you want what is best for your wife - and no-one can do everything alone (eg. flu jabs) even the heroic ones like yourself.

    May I suggest you involve a social worker (not sure how the English system works - I'm an Australian - but it sounds from other posts as if they might be the most helpful) and tell her / him exactly what you want. It sounds like very little - just help with those things you simply cannot do and also a friendly check up and call once a week or so.

    Another benefit I see from this is that (Heaven forbid) if there comes a time you cannot care for your wife, there will be at least the beginnings of a service in place.

    After your experiences I can well understand your reluctance to let others get involved and your determination to go it alone, but hopefully someone in the Social Worker world can be made to understand that you still want autonomy - just help with those things you simply cannot do.

    I wish you every success in achieving what you want and need. You have been outstandingly effective to date so I can only see success for you in the future. I do understand how frustrating it is though to feel no-one listens, or worse, cares.

    Take care of yourself too!
    Nell
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Padraig, you're doing a fantastic job with your wife, but do you have to care alone?

    I sense some confusion in your post - you say you don't want to share the caring, but you want someone to listen. They can't listen if you don't talk to them. Even with a baby, the new mother has to attend clinics and ask for help when she needs it.

    I think you're right about the generation gap. We oldies are usually caring for a much-loved spouse, and dread the thought of separation, even though realistically we know the day will probably come. Younger ones are usually caring for a parent, while also having to cope with their own family and career. It's a hard juggling job, and they deserve all the help and support they can get.

    Padraig, I'm not criticising. I really admire your resolve to care for your wife yourself. But don't be too independent. Why not ask for an assessment by social services. They won't force anything on you, you can accept or reject anything they offer, but you need and deserve some help.

    Good luck, Padraig, you're doing great.
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    Padraig, Can I endorse what Nell has written. I think you have built up such a reputation of independence for yourself, that key workers may not wish to intrude, or invade your privacy.

    I speak from personal experience. I have been offered help for my husband, by our GP and the EMI medics, but because my husband is such a private person and because I`m coping, I`ve declined.

    We also had an upsetting experience when we did allow a CPN to visit, and don`t want a repetition of that.

    What the medics have said to us, and I hope they have also said to you, is when we do find we need help, they will be there for us.

    Would it help if you wrote to your GP and told him/her how you feel, what provision you would like from the NHS and whether or not it`s available.

    Take heart. Sylvia
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Nov 15, 2006
    Last edited: Nov 15, 2006
    Frustration toward the whole system in geting outside help also the way they treated your wife is the main issue with carer, I have been going to a group that talks about that, it is called looking after you.

    That was the main issue frustration, a woman had a similar story to you, but her daughter is 22 .

    So at the group we try to find ways to look after ourselves, as you do in going running, to let go of that frustration and move on from that mental attitude. Finding another way with helping us with your caring role

    I total understand you wanting to see this to the end with your wife.

    How about contacting the doctor asking for a direct nurse , just pop in one a mouth to se how your getting on , in doing that next year they well come around to give you both the flu gab. She may know of a way to help you weigh you wife .

    Self funding means that you have so much saving that you can pay for someone to come in to help you with your wife hygiene need.

    If you only have a privet pension and a basic pension, no high saving the SS will fund pay for it all for you with an agency so a carer can come in to help you.

    Seeing that you can not pick up your wife , social service can help you with apportion to help you lift your wife at home , get her the right bed , with a help of a carer you could lift your wife also help wash your wife , you can even Supervise as she does it , just to give to a break, while your in your own home with your wife , but like you say its your generation, no your not selfish at all , just suborn I say that in the most loving way , like I would to my father xx
     
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Little by little ...

    Dear Padraig,
    Just like each Alzheimer patient is an individual, so each carer and each situation is individual ...... and the same goes for each GP, CPN, etc. etc.

    Don't be put off by one (or two ...) bad experience, and please, please don't wait for an emergency. Try and get in touch with your CPN via your GP, with a bit of luck, he/she will keep an eye on you and your wife, and will give you lots of advice of what sort of help is available. As someone else said: you are under no obligation to accept anything you are not comfortable with, but hopefully you will find an ally who will see things from a slightly different angle, and who can also help you prepare a contingency plan. If you don't feel at ease with your CPN (I didn't with our first one, or her replacement, but we were definitely third time lucky!), perhaps your local Alzheimer Society would be able to help?

    Meanwhile, please keep us posted. You are doing such a fantastic job - God bless!
     
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    When my mother was looking after people at home she seemed to get much more help from doctors, not doing much (there wasn't much they could do), but just popping in to listen. Perhaps they had more time in those days, now everything is target-driven.

    Her favourite doctor needed someone to listen to him too, with his wife sick with MS and one son attempting suicide. So perhaps he came round to tell my mother his troubles.
     
  17. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Feeling fine

    Thank you all for being so concerned about me. To-day I'm in great shape. Yesterday I took my wife with me to the dentist to have an extraction. Some months back I had an operation on my gum to save a tooth but it failed as I had an abscess which went and came as my system fought the infection. My other upper teeth also hurt with losing a friend, now I feel I'm wining. Still waiting for a flu jab but I'm sure they'll get around to it and when they do I'll ask to have Jean weighed as she seems to feel a bit heavier when I lift her in and out of the car.
    When I read all the posts on TP it makes me realise how lucky and fortunate I am to be able to care alone. Yes I do have to care alone Skye, I'll never shake off what I am. We're all the product of our up bringing and mine was akin to an abandoned abused dog. My wife won me over 51yrs ago and I will never let anyone part us. Amy, who looks out for me? I do and always have, consider if I could overcome the lack of any guidence in life and still success in sport and work,
    which allowed me to retire at 54. Caring for my wife is a joy, I live for just NOW and let time as it passes throw up what it will. I must admit there are times I feel like the Garda (Irish policeman) leaning over a humpback bridge as he watches his friend Sean chiselling under the bridge: "What you doing Sean" "Making a couple of groves to get the donkey's ears through" Garda:"Wouldn't it be easier to dig the ground?" Sean "Sure it's no wonder ye don't get promoted, it's his ears that are too long not his feet."
    This Alzheimer's never stops it's hide and seek, Jean looks bright and alert one moment, the next worn out and staring blank. Yeasterday she showed real concern for my pain, but I reassured her I'll die before I leave you. "May you be in heaven half an hour before the divel knows your dead" God bless. Padraig
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Padraig,

    What a womderful post. I'm so glad you're feeling better. We all have bad days, and it's so good that TPers are always there with words of encouragement.

    Of course you must care alone if that's what you want to do, I wasn't trying to say otherwise, just to remind you thet help is there if you need it. You obviously don't at the moment, and I have the utmost respect for that. I love my husband dearly, and I hope I can be as strong as you.

    I love your sense of humour.
     
  19. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Partial success

    Hi fellow carers. Thanks Skye, just thought I'd let you know a nurse turned up out of the blue to give Jean her flu jab. She'd never met her before, so at least she was able to see first hand what it entailed removing clothing from a rigid body to get to her arm. She didn't have a jab for me! but suggested I visit the surgery. Once again I had to explain that Jean had two seizures this year and was rushed to A&E. They happened when she woke up from a nap in the day-time. Now I must await my jab. Do other people feel as I do : Like the fellow who owned a pet shop and sold his friend a parrot telling him it would be a good talker. Talking to the bird for two days it showed no sign of speech. Returning to the shop his friend sold him a ladder and swing for the bird. Placing it in the cage and encouraged it to climb and swing, then started cursing at it because it wouldn't talk. He returned to the shop and was sold a mirror and bell. The bird by now was listless and bored and showed only passing intrest.
    Two weeks later he met his friend in the street: "How's the parrot?" "He's dead"
    "Well didn't he say anything?" "Yes, hasn't that shop got any bl**dy ***** food?" There have been many times I've felt like that parrot. God bless Padraig
     
  20. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Good and bad news

    Hi fellow carers. Just got a call saying they were ready to give my wife her flu jab. She had it last week! now I'm to have one soon, how's that for efficiency two seperate journeys for each jab? The bad news is Jean had a seizure on Sat 25th. Once again I had to phone an ambulance to visit A&E the third time this year. So far the best I can get for follow up is a visit on the Wed 29th from the GP who doesn't know my wife. That's better than the two earlier times when no one bothered to follow up. I'm hoping to learn how to deal with any future mini strokes/seizures which may occur. I find them fearful, and fear is the unknown, how to stop her from biting her tongue. Maybe my luck is turning, getting a flu jab and a GP visit, not before time, Sat started off bad rain chucking down all during my early morn run, but all is well that ends well I had her home in the late evening. I must be one of the happy lucky ones I've still got my girl. God bless. Padraig
     

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.