Any advice would be greatly appreciated!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by sony, Aug 22, 2006.

  1. sony

    sony Registered User


    How are you all?

    Now, where do I start?? As, some of you may know, I have posted the odd time - for those who don't - a quick update: my granny has had alzheimers for quite a while and my Grandad has never accepted it and is now starting to show some signs himself. My Mum is their daughter and they practically live next door to us in the countryside! My Mum has one sister and 5 brothers, of which the sister and one brother help out "when it suits"!!

    Anyhow, my Mum and Dad were away on two weeks holiday in July there and while they were away, my Mum's family really couldn't cope!! Before my Mum went on holidays she had asked for more home help and social services said that it wasn't available for my granny the only way would be to have my grandad assessed in order to get more help, so that meant him seeing a dementia/alzheimer's Dr, who he had previously got an appointment for and refused to go! Anyway, their GP decided to go ahead this time and have the dementia Dr call to the house. The day before she came, my grandad fell and got a black eye. She thought he was forgetful, but not too bad. She ordered heart ECGs, bloods, etc.

    My Grandad likes to go to the pub a few times a week (bearing in mind he is 82 years of age!), which no-one likes to begrudge him since no-one knows how much longer he'll be alive and well. But he still thinks he's a young man and drinks far too much and comes home in a bit of a mess. Which doesn't help my poor granny! While my parents were away he got particularly drunk one night, and during that night my Granny left the house at 2am! If he had of been sober, he would've heard her leaving! Therefore, this caused quite an argument and since that my Mum's sister has refused to speak to him!! Which means she doesn't go to see my Granny when he's in the house!! Which also means my Mum has EVERYTHING to do.

    This past few weeks, my Grandad has been very grumpy over his pension - you know how there isn't any pension books anymore and it is now a post office card account? Well, he can't understand Mum goes to the post office every week and gets my granny and Grandads pension - she keeps my granny's coz she knows my Granny will hide it and uses it for shopping, etc but my mum always gives my grandad his money. Well, this morning my grandad had an argument with my Mum saying he had no money (even though she gave it to him yesterday) and he was sick of having to beg her for his pension, he also asked for his 'pension book' so he could go and get it himself!! My Mum gave it to him, knowing that he'll probably lose it which will make even more work for her trying to get a new one. I got the impression that he was kinda accusing my mum of keeping his pension, which she would never ever do!

    But, we have just heard from one of mum's bro's who rarely calls that he was there one night that my grandad had come home from the pub and was in bed sleeping and he secretly watched my granny go through my grandad's pockets and take out all his money....nobody know's where she put's it!! What would you do about that?! There's no point telling my Grandad that that it where is money is going coz he'd probably aks my granny about it and she'll not remember even doing it!!

    I love my grandparents to bits but I really hate living at home at the minute coz of the stress my Mum is under and the way that everyone treats her. I also think it is putting a strain on my parents relationship, although I don't think they'd admit to it.......

    I hope you can understand this message as it is a bit all over the place!! Any advice or words of wisdom would be greatly appreciated!!


  2. Áine

    Áine Registered User

    oh my goodness ....... what a pair, Sonia! you really need the rest of the family to be not falling out with them and each other about it. whatever support your mum's brother and sister are not/giving you could do with explaining a little more to them about what's going on so they don't make it worse.

    i had a real battle getting the gp/ consultant/ social worker to recognise there was any problem ......... i suggest, uncomfortable at it might be, you keep hassling them

    the other thing ........ power of attorney ........... if there's muddles with the money, and an extended family who might kick off about stuff ......... it might be a good idea to sort power of attorney now ...... for both of them!

    the really sensible thing, in a muddle like this, is to start trying to talk constructively about it ....... which is exactly what you;re doing here.

    best wishes
  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Sonia love,
    No words of wisdom - just what a mess!
    The main problem sounds to be grandad, who doesn't really sound to be an appropriate carer for your grandma, due to his own failing health and his drinking. Can grandma be left alone, or does your mum have to sit with her when grandad is out?
    Would it be a possibility for grandma to live with your parents, or move into a residential home? Her safety must be paramount.

    I think accusations of theft often come with short term memory loss - well if you are convinced you had something, and then you can't find it, it must have been stolen! Difficult, but your mum must try not to take the allegations personally.

    It must be dificult being at home - watching people that you love being ripped apart. Do you have friends that you can talk to? There is so much here that you can do nothing about - your parents and grandparents have to work a way through it. You need to look at the things that you can do - just ensuring that mum knows that she is loved; trying to give her little treats (a cup of tea, a box of chocolates, taking her out for a coffee) - as she must feel that her life is being taken over by her parents' illness. Your dad's support also needs to be appreciated - as he probably feels that he is losing his wife.
    And what you can do, is live your life (I'm not quite certain how old you are and what stage you are at.) But speaking as a mum, I know that knowing my kids are OK, is all important. Yes, they have supported me with their granparents, but none of us would want to think that their grandmother's illness was distressing them too much.

    Don't know if this is any help at all.
    Take care.
    Love Helen
  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    My mother said most men have no idea how much money their wives shake out of their trouser pockets. (She said that years ago, before dementia.)
  5. sony

    sony Registered User

    Hi everyone,

    Many thanks for the words of advice. Amy/Helen you're right, my grandad is the main problem, although my granny has alzheimers she is very easy to look after and doesn't cause that much bother....most of the time. I love my grandad to bits, he is a really lovely man, and my granny can't cope without him, they are married 53 years. I know there is nothing that I can really do, but it just hurts me to see my Mum and grandparents going through this. I know people talk about grieving for people with Alzheimer's before they die and I think I'm doing that. I was in my Grandparents house the other day and my granny asked my granddad had he seen Sonia (Me) and he said 'there she is there' pointing at me sitting beside my granny and she looked over and 'said that's not our Sonia', it's truly heartbreaking. I'm actually almost 21years old, I still live at home as I have another 2 years of college to do and can't afford to move out.

    My Mum only found out this morning the outcome of the appointment my Grandad had with the Dementia Dr - she has diagnosed him with moderate vascular dementia........ I don't know much about it when the person has 'mini-strokes'? The Dr told my Mum that unlike my granny who will decline quite gradually, my Grandad can go from fine to bad quite suddenly....which is quite frightening.

    Thanks again

  6. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Sonia

    You sound like a very loving and caring daughter and grand-daughter.

    It is very hard to come to terms with AD, my Mum has it and my 21 year old feels much the same as you do, what helps her and my other 3 daughters the most is to talk openly about our feelings to my husband and I and each other.

    The scariest part is not knowing what is going to happen and when, but that is the nature of the beast unfortunately, no timescale or definite pattern, each case seems to be so different.

    You can do something, be there for them as and when you feel you can, but also get on with your own life and friends, don't put your own life on hold, that is not what your parents or grand-parents would want, I'm sure.

    Take care of yourself

  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Sony

    So sorry to hear about your granny and grandad. It does sound that you need more help from outside the family; CPN/Social worker and the like.

    My mum has Vascular Dementia and AD. In terms of her deterioration, I would say it's been fairly slow compared to what I read on here; although frustrating and heartbreaking to watch. There is a separate link about Vascular Dementia on this site; it might be worth you having a look at the previous links. Sorry am fairly inept at fiddling with this site to put them in my post, but they are on the main list of topic headings.

    Meantime, as Amy said, you have to consider you in all of this and live your life but I know how difficult that must be for you. You sound as if you're very close to your parents and grandparents, which makes the burden more difficult to bear. Like Aine said, you have already started doing something constructive, by 'talking' to us here. Keep doing that and let us know how you and your family are getting on.
  8. Helena

    Helena Registered User

    May 24, 2006
    My Mother is 89 and her detioration with Vascular Dementia seems to be fairly rapid but maybe advanced age is another factor in all this

    I only wish I knew because just trying to cope with its effects is horrendous simply because she is so incredibly argumentative and difficult
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hi Sonia

    Yes, Vascular dementia is caused by TIA's and deterioration will come in lurches, following the mini-strokes. For your Grandfather, the whole situation will be complicated by his drinking - alcohol is not the best medicine for someone prone to these. I assume the doctor has, at the very least, put him on blood thinners (e,g, Asprin). Also, when someone has had even just one drink, it can be difficult to detect if they have had another mini-stroke at the same time - thee assumption will be that any confusion will be due to drink, when it could be something else enitrely. The possible light at the end of this tunnel is that, speaking from my experience with my Mother (someone who liked an occasionaly tipple) is that in any dementia, tastes can change. She now does not like the taste of alcohol.

  10. cris

    cris Registered User

    Aug 23, 2006
    Hi Sonia. Well done for posting. Have you tried your local branch of the Alz. Society. They, I think are a good place to start. There are people there that really can give you advice that is relavent to your area - doctors, social services. Social services are probably stretched. I have found my local branch to be so very helpful when needed.
  11. Nell

    Nell Registered User

    Aug 9, 2005
    [QUOTE=sony] I was in my Grandparents house the other day and my granny asked my granddad had he seen Sonia (Me) and he said 'there she is there' pointing at me sitting beside my granny and she looked over and 'said that's not our Sonia', it's truly heartbreaking.

    Dear Sonia,
    I want to share with you the story of my friend.

    She is the youngest of 6 children, in her thirties, a mother and a doctor. Her mother died recently (was an AD patient). One day towards the end, she asked my friend where her youngest child was. My friend replied "I'm ..............., your youngest child". The old lady frowned and said "Oh no! that isn't right - there is one MUCH younger than you!"

    My friend said she felt very, very old at that moment!

    This lack of recognition must be one of the most horrible things to deal with. We haven't faced this with my Mum yet altho' she does confuse me and my sisters (there are 3 girls) and often attributes her grandchildren to the wrong parents, especially when she is stessed.
    Take care.
  12. sony

    sony Registered User


    Hey everyone,

    So sorry that I haven't replied to your kind and helpful posts!! Things have been hectic with my grandparents lately! Even though I haven't been physically involved in it, I have had to watch the effect it is having on my Mum, I am also her 'listener' if you like and it breaks my heart to see her like this. I've booked to take her to a health spa for the day to try to destress her before she has a nervous breakdown but sure God only knows when she'll get time to go.

    Anyway, basically this past 2/3 weeks my granny who had been a little bit incontinent, has become extremely incontinent. Which meant that when my mum went down every morning, the bed, the floor, the hall, the bathroom, everywhere was soaking!! And sometimes soiled also. So, that went on for about a week before my Mum and her sister decided that it wasn't fair that my granny could be lying in her own urine all night and decided that someone had to stay to get her into clean clothes and to get the sheets changed. So, my aunt stayed one night and then told my Mum that she had to stay the next night (even though it is my Mum that is their carer during the day) and then my aunt took another turn, and so on......!! My grandparents live in a bungalow that has the attic converted into two bedrooms, so my Mum and aunt took the double bed down into the dining room for my grandad to sleep in so that he wouldn't be disturbed, but he refuses to sleep in it!! Probably since him and my granny have slept in the same bed for 55 years, he can't bear to be without her?

    But it has come to the point that my Mum couldn't cope with doing the nights, so she rang a friend of her's who is a home help to see if she'd be willing to do a few nights but she said so couldn't but her sister might. So, this woman is coming to stay tonight, but God know's how it will go coz my Grandad will not be impressed with a stranger staying in the house!! This lady also recommended we get a set of baby monitors so that she can hear when my granny is getting up. The only thing is she is going to cost £45 a night. There's someone from a care agency coming to stay tomorrow night and she costs £6.50 per hour so about £58 for the night.
    The only problem is that my Grandad has all the savings; my Granny only gets her pension and DLA and my Mum doesn't think that they could afford to pay someone to sit at night time coz she doesn't think my Grandad will take money out of his savings to pay for it. At the minute my granny and grandad get an hour and a half of state-funded home help from 11.30am-1pm in which time my granny gets washed/showered and the dinner is made. In the evening there is someone coming in 7 nights a week to change my Granny into her nightdress - this is being paid for until such times as funding comes through.
    With regards to the night sits, my Mum's 5 brothers won't be willing to do it because my Granny needs help to clean herself after going to the toilet, so that leaves just my Mum and her sister, and they can't physically do 7nights a week between them, so it's going to depend on whether or not they can afford to pay for someone to come in. I actually thought that the incontinence would stop coz it did before but it just seems to be getting worse this time.

    So, many people have said to my Mum that they think my granny would get on well in a nursing home, (the GP, the home helps, etc.) because she likes a routine and she likes to chat with people. I'm also thinking that way too coz I know for a fact that my Granny wouldn't want my Mum to be uner the amount of strain that she is. However, I hate the thought of her being in a nursing home, and if my Grandad is left at home on his own, I dread to think what he'd be like. In an ideal world, they would go into a nursing home together, but as we all know this world ain't ideal!! Far from it!!

    I'm so afraid of the whole family falling out over it coz I know it'll probably be my Mum who will have to end up suggesting a nursing home coz none of her brothers or sisters will coz none of the rest of them understand what is involved in caring for them! She just happened to mention to one of her brothers tonight that the GP suggested a nursing home and he nearly flew of the handle saying "no way, they'll just drug her up in there" but they don't understand that if my Mum doesn't get more help, that that is where my granny will have to go and it is my Mum that doesn't want her in a nursing home most of all. But I do think she'd be more settled in a nursing home.

    Also, this week my Grandad had to do a driving test (his first one ever!!) coz he was reapplying for his licence and the GP filled in the medical form and then the driving licence people requested that he do a driving test. So, he did it on Wednesday and failed (which was unsurprising!) but he was really disappointed, so that's annoyed him this week too! But I can understand, it's like losing another bit of his independance!

    I'm so sorry that I've went on for so long!! I'm not sure if it makes any sense, but I was glad of the opportunity to vent!! Thanks


    P.S - I hope all your loved ones are doing well, keep smiling!! :D
  13. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Sony,
    Good to hear from you again.
    From what you say, I think you are probably right, a Nursing Home may be the best option for grandma - she is obviously beginning to need 24 hour care, and it is a struggle for the faimly to provide it.
    I think this fear of people being 'drugged up' is a bit of a hang over from the past. Modern thinking seems to be to keep people as drug free as possible. Thhe thing is, if your uncles do not do or see the level of care required, they will not understand the strain on your mum.
    Take care.
    Love Helen
  14. sony

    sony Registered User

    Hiya Amy,

    Thanks for your reply. I know where you're coming from and I can see that too but I can't get involved as I am only their granddaughter! So, I will just have to sit back and wait and see what happens!

    Since, I last wrote, my aunt (Mum's only sister) has taken bad with depression (she has had bouts of depression throughout her life but this is a particulaly bad one), her husband rang my Mum this morning to say that she is very bad with it and that she wouldn't be able to come over to help my Mum for a considerable amount of time.......

    So, this was the catalyst for a 'family meeting'! As it was my Mum and her sister who were supposed to do the night sits, therefore my Mum couldn't do them all herself! So, my Mum and her 5 brothers got together this afternoon for almost 3 hours to discuss the whole thing. They have come up with a rota for the next three weeks. Which includes 4 of the boys staying all night (one of the boys refused to do a night sit coz he wasn't comforatble with caring for my Granny's toileting needs, which is understandable), I doubt that the other boys are comfortable with it either but they are willing to do it.....however, I have a funny feeling that my Grandad will kick up a stink when he discovers that his sons will be staying in his house at night in order to take my granny to the toilet!!!

    Also at this meeting the issue of money and having to pay for their care out of their savings (the children's "inheritance") also came up, with one or two of my uncles saying that if my grandparents have to go into a nursing home the government take their savings anyway, so why not use the savings to pay for them to stay at home. While another uncle stated that he expected to receive some inheritance, this caused a bit of friction, but what can be done about it??

    So, the rota takes them up until the 1st of October and they also have another meeting scheduled for that day to review how its going.....I can't believe how organised they're being :eek:

    Another thing, my Mum has found these Boots own-brand disposable incontenince pants that she thinks are very good, but they're something like £7.99 for 8 of them (not cheap), so I'm wondering do any of you know can she apply to health and social services to be reimbursed for them??

    Gosh, the words just fly out of me when I come on here!! Sorry to go on yet again!!

    Thanks for listening/reading!! :p

  15. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Sony,
    Progress, brilliant!
    Mum needs to contact the district nurse who can arrange for pads or the Incontinence Team to assess needs - they will then provide pads free of charge.
    Love Helen
  16. Lynne

    Lynne Registered User

    Jun 3, 2005
    #16 Lynne, Sep 11, 2006
    Last edited: Sep 11, 2006
    Hi Sonia,

    I'm so glad to learn from this thread that more family members are going to get involved with "hands on" caring for your Granny. Apart from the obvious partial relief this should give your Mum, they will at last start to appreciate what your Mum has been dealing with all this time, and how unhelpful your Grandad can be! It could soften hard-line attitudes to her future care needs once they understand the realities of the situation. Perhaps some of the 5 "boys" have wives who might be able to help in small ways too; the wider you spread the load, the lighter it gets for each individual person.

    Can I take a guess that the Uncle who backed out of the care rota is the same Uncle who
    or am I being unfair? Not my place to comment :eek: , I know, just a random thought.

    I hope "the plan" works out - maybe not perfectly, that might be too much to expect - and that you will let us know how things go on.

    Best wishes
  17. frederickgt

    frederickgt Registered User

    Jun 4, 2005
    need advice

    You have my sympathy Sony, i my case,and I am a near 80yr old,Incidently my wife anna gets an allowance for me because I am registered disabled,but I get nothing for her.
    I tried contacting local ]Social servicesbut was told that A.they didnt have any money,B. they didnt have any staff,and C. they didnt have any vacancies,but they did arrange for a woman to come around every morning and get anna out of bed,washed and dressed,b ut,by the time they came around ,9:30 am,Anna was already up and dressed,same with meals on wheels,who has lunch at 2;30?
    Understandable when these women have several names on their list,so someone has to be last.
    I bugs me to hear that N.I.C.E. are debating stopping whether the NHS should supply Aricept for Alzheimers patients,nice,there is a name isnt it.
    I have had a letter from DVLA to renew my driving license,it could be that it will be refused begause of my age,then who will take Anna around to her lunch clubs gets harder.
    Took Anna back to Ireland last week,drove all the way there and back without incident,although I dont fancy repeating it for a while.At least anna got to meet her surviving relatives,and to see where her mother father sister and brother were buried,so she know I cant take her home to her mother again.(Not that that stops her asking) I am thakful for small mercies,she is utterly dependant upon me,and we still love each other,although there are tmes when I have to remind myself to have patience.
    great to have this forum to get things off of my chest,
    Thank you for listening.
  18. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hiya Sony

    Looks as if the family are pulling together a bit, maybe when they have all 'had a go' at looking after your nan they will appreciate that in the long term she would be better cared for in a nursing home, other wise you will all be lurching from one crisis to another.

    It might be a suggestion at the next family meeting for some of the children (especially those so against it) and granddad to visit some suitable NH to see what's on offer, doesn't mean you have to make a decision immediately, the 'first hand knowledge' is there in the background should you need it.

    On the financial front, your mum could suggest (again delegate members of the family, espcially those worried about their inheritance) to look into the financial aspect of nan going into a NH, again you will then have all the info to hand should it become necessary in the future.

    Hope this is a bit of help to you.

    PS Your mum could also ask the district nurse for inco bads for the bed for your nan, saves on a bundle of washing sheets if the pads leak!
  19. sony

    sony Registered User

    Hi everyone,

    Thanks for your replys!

    Yeah I'm so glad that some of the burden is being lifted off my mum.....eventually!! Last night was the first night for one of my uncles to stay, he got on OK I think, he had to take my granny to the toilet 4 times and I think at least once, she had wet herself and she couldn't get her pants off so, he helped her and then gave her clean ones and a clean nighty. So, I think he was ok with it. Another uncle is staying tonight, he's not so keen though, so we shall see how he gets on. Then its my Mum tomorrow night.

    My Mum does get pads from helth&social services which are ok but she thinks these disposable pull-up pants from Boots are better for my granny.

    Cate - Mum also buys pampers baby sheets to protect the bed, the nurse didn't provide any?

    Fred - I think you are amazing!! It's brilliant that you can use the computer and all at your age, my poor grandad who is only 2 years older than you wouldn't even know what a computer is never mind use one!! I know what you mean about the times that home help come at - my granny is almost always dressed by 11.30am so they have to undress her again!!
    Do you think they will not renew your driving licence? It has really annoyed my Grandad, I suppose it's like losing another part of his independance, but it is for the best. Apparantly, during his test last week he drove through a red light and told the examiner that he thought he could drive through coz there was nothing coming!! It's better for everyone that he's off the road! So, he has now even started talking about selling his car which is great coz we all thought he would never part with it! It's 5 years of age and it only had 8,000 miles on it!!
    Where is Anna from in Ireland? Are you from Ireland too? I'm in Armagh in Northern Ireland. We took my granny up to her old home where some of her brothers still live last week and since I am a photography student I took loads of snaps but when I printed them and showed them to her she didn't know who they were. (I have attached one of these photos from last week - from left to right: My Grandad Joe, My Granny's Sister-in-law Bridie, my Granny Bridget and my Granny's brother Jim). My Granny is always asking where her Mummy is and my grandad can get quite impatient and just tells her that she's in heaven, whereas we tell her little white lies!!

    Amy & Lynne - Although I am delighted that my uncles are now getting more involved, I still think it is a disgrace that my Mum had to arrange a meeting and ask for their help and that they didn't volunteraly come to my Mum and offer their help!! It's still early days, keep your fingers crossed!!

    Anyway, it was nice talking to you's all again, I have to go do some degree work and I'm stuffed with the cold, so it's not easy!! Ah well!!

    Love and Best Wishes

    Attached Files:

  20. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    Not just debating, they have decided that it's not "cost effective" to give Aricept to people in the early stages. There are already new prescription guidelines, but these have been held up only because people like the Alzheimers Society have lodged an appeal.

    They have also recommended to entirely withdraw Ebixa.

    However, people already on the drug will continue to receive it.

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