1. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Well I know the ideal answer but unfortunately life isn't...

    Basically, mum can't drive anymore and she can't really speak (just odd words but not necessarily the right ones). She also has little understanding of money.

    At the moment she's driving dad crazy because she wants to go to town to the shops several times a day. He takes her once each day but then refuses to take her again. This has resulted in her constantly leaving the house and trying to walk to town (about a 30-40 minute walk I guess).

    Dad eventually realises she's gone and goes after her and brings her home only for the same thing to happen again within the hour usually.

    It probably sounds like I'm a bit mad at my dad there and I am because how hard is it to lock the front door so she can't get out without him knowing? We even bought him an alarm that goes off if the front door opens but he won't put it up because he doesn't think it will work - I have no idea why.

    Anyway, we wondered are we being too over protective? Should we let her walk into town if she wants to?

    I know it's hard for you to say but any thoughts would be appreciate.
     
  2. cariad

    cariad Registered User

    Sep 29, 2007
    89
    independence

    Hi Kate, my mam hasn't had an official diagnosis yet but 'they' think it's FTD (specifically primary progressive aphasia). I am in exactly the same dilemma. The thing is with ftd, people generally remain orientated to place i.e they know where they are. My mam moved in with me in aug when my Dad died suddenly. Up until then, my Mam had been going out on her own every day. She has learnt the lay out of my estate (even though the houses are identical). Problem is , her speech is slurred and poor and she doesn't always understand money. I asked the CPN exactly what you are asking. He said my mam is very vulnerable and needs someone with her to help her communicate and apologize if she is inappropriate. So basically I accompany her everywhere or she meets a friend. I do however 'let' her walk the children to school. But like you I don't know the right thing to do. I have managed to get a sitter in on the mornings I work (I introduced her as afriend of the family). Your mum needs support but it's so difficult as (if she's like mine), there is nothing wrong with her. I find that a routine works well e.g I take her shopping each morning and plan activities for the afternoons. Are there any friends who could offer an afternoon to 'trail' her. They wouldn't need to help out unless she got into difficulty and would maintain some independence. I know that it would be impossible to get someone everyday but if a friend could offer one afternoon a week at least that would be one full day your Dad (and you ) wouldn't have to worry. It sounds awful to have her followed but it is for her safety. I'm lucky that I can be with my mam and take her where she fancies (I have no life though!!). Hope this helps a bit., Berni
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Kate, I do feel for you - you are trying to cope with one parent with dementia and one parent with terminal stubborness.

    I don't have an answer or even, really, an opinion. So much depends on the envionment we're talking about. There are some small towns where everyone essentially knows, at least by sight, everyone else, and there are others that aren't like that at all. Traffic is another issue, and how stable your mother is on her pins. I don't know what it is about dementia and this desire to be "constantly doing" - after her strokes my mother went from being a real homebody (hardly went out, had groceries delivered, and liked it like that) to someone who constantly wanted to be somewhere else - in her case it was probably a misplaced attempt to escape from her illness or a desire for entertainment which she could no longer satisfy with books etc. Fortunately from a management point of view she was very physically disabled due to arthritis.

    Take care
     
  4. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thanks Bernie,

    It is very difficult isn't it? Mum is only just turned 60 and she's as fit as a fiddle. Given that she doesn't think there's anything wrong with her I can see why she objects so much to being shut in and not allowed to go where she wants.

    The problem in recruiting help is that because mum is so young, most of her friends and family work so they can't help.

    I thought that maybe a GPS tracking device would be a good idea but again, dad is dragging his feet and although we would know where she is it wouldn't help her if she gets confused orupset - it's very common for her to walk around she shops with dad crying her eyes out - we can't find out why - we're just assuming she wants something we don't know or she realises she's confused and that upsets her.

    Can I ask is your mum very tearful or aggressive?
     
  5. cariad

    cariad Registered User

    Sep 29, 2007
    89
    Tearful yes but she only lost her husband 3 months ago. She is 64. Before Dad died she would occasionally be tearful but if we asked her if she was sad or depressed she'd say no. She is never physically aggressive but can sometimes be verbally aggressive (only to me though!). My mam is good with traffic and directions but all her people skills have gone. I gave my mam a mobile phone (for when I leave her shopping with friends) but she never answered it.I know what you are going through Kate, even if I can't offer any solutions.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    Dear Kate,

    I wouldn`t worry about your mother going out and about if her language was still intact. That`s the bit that would worry me the most.

    My husband was always going out, the cold weather is keeping him in now, but on the odd occasions he got lost, at least he could ask for help.

    Does your mother carry any ID? That is the most important thing to think of. There was a super tip on TP a while ago, from TownCrier. Use a dog`s identity disc engraved with home phone number, name and the fact your mother has AD. This can be put on her key ring. I have done this for my husband, [well I`ve ordered it but it hasn`t come yet]. He has an ID card in his wallet, but he keeps playing with papers in his wallet and I don`t trust him to replace the ID card.

    Your mother is too young and too active to sit at home all day. I imagine she is very restless and I imagine your father is fed up to the back teeth with running after her. It certainly isn`t for me to say what she should or should not be allowed to do.

    But when Dhiren goes out, at least I know he has enough ID on him to get him home.

    I hope you will be able to sort something out.

    Love xx
     
  7. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I think deep down I know it's not really practical for her to go out by herself - as you say the fact that she can't speak is a real concern but for me it's the sudden modd swings and aggression that worry me as well. Any sense of appropriate behaviour has gone out of the windown in that respect.

    I think I'm clutching at straws a bit because I don't know what to do to make dad accept responsibility and do what needs to be done - that sounds so hard I know.

    He's had to finish work because we couldn't have her on our days off anymore as the girls (2 and 3) were becoming very distrssed by her outbursts - my 3 year old niece talked about it for a month when mum was hysterically crying in front of her.

    I feel bad for this because I'm not saying it's easy - it's the hardest job in the world - and I'm not saying I would do a perfect job (who of us can claim that) but he's got to realise that he can't just shrug his shoulders and do nothing.

    Why will he not lock the door? It's a mystery to me that I get no answers from.

    I wouldn't mind his doing nothing except that he then rings us and accuses us of:

    * not helping
    * her putting on weight (she eats because we don't talk to her
    enough!)
    * her compulsion to go shopping (it's a sign that she wants
    female company)

    She hates being in our houses and just wants to leave when she's there - if he makes her stay more than a few minutes she gets really annoyed and the tantrums start - but he says this isn't true. I think the fact is he wants her to want those things.

    I don't know if I'm making sense anymore - sorry for blathering. I feel like a real b**ch but it's how I feel.
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Kate I suspect he won't lock the door because he's tried it and can't cope with the fall-out. Is that possible? I imagine that if she finds a locked door she's not going to quietly turn around and do something else - there are going to be major runctions. All I can think of is, if he can't or won't do it, is find someone who's willing to trail around with her every afternoon. It wouldn't be cheap, but the only alternative I can think of at this stage of her condition is sedation which seems more than a little extreme.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    Dear Kate.

    It looks as if your mother is too much for your father to handle, so it sounds as if he`s holding his hand up in defeat.

    There is no way I could lock Dhiren in, to stop him going out. He would go beserk. If your mother is volatile, I expect she`d have the same reaction.

    However, your father shouldn`t expect from you what he can`t do himself. You have your own familiy and responsibilities.

    If you could possibly think how much time you can give to your mother, and it doesn`t have to be more than you can manage, you could tell your father, `I will help out a, b, and c, but that`s as much as I can do`. The rest is up to him.

    You sound at breaking point yourself. Your mother isn`t your responsibility. It`s wonderful if you can help, but you can`t be expected to take over.

    If your father has given up work to look after your mother, that`s what he should be doing. I`m not saying it`s easy, nothing to do with AD is easy, but we have to face facts and get on with it.

    Sorry if I`ve been too outspoken. I`m sorry for you.

    Love xx
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Kate, you are certainly not that (whatever it is:D). You're in an impossible situation.

    I'm afraid your dad is still not accepting responsibility, even though ha has given up work. It's totally unfair that he's putting the blame on you, I'm sorry you haven't managed to get through to him that you're doing as much as you can considering your own family responsibilities. He's very lucky that you do as much as you do.

    Could you try Crossroads again? They would take your mum out shopping, and give her someone fresh to talk to. I know communication is difficult, but they're used to it. John's Crossroads ladies were wonderful.

    Apart from that, the only thing you can do is stay firm with your dad, and convince him that he has to take responsibility himself. Not easy, and you have to be prepared to take the flak, but he really is being unfair to you.

    Berni, glad to see someone else on the forum dealing with PPA. John's now in the end stage, but if you want any info, get in touch.

    Love to both,
     
  11. cariad

    cariad Registered User

    Sep 29, 2007
    89
    Kate, you are not a b~~#h! Just a concerned, frustrated, worried sick daughter! I thought my Dad wasn't patient enough with mam until he died and I learnt what it's like to cope with someone who is self centred, illogical and demanding 24hrs a day! I soon realised that

    1. My Dad was denying her illness (maybe she will get better)
    2, My Dad was worn out and doing his best (oh how I wish I could say those words to him now)

    Remember that FTD and alzheimers are very different. The fact that your mum can't speak is not reason alone for her to need accompanying . However if others are at risk from her behaviour (the aggression) or if she herself is at risk (if she has no perception of dangerous situations)then she needs a chaperone.The over eating and desire to spend are classic ftd behaviours and no reflection on you!


    If there's one thing that I've learnt in the last few months it's that life is far easier when I do what my mam wants to do. Things are tricky if I want to do my things. Your Dad needs support and so do you. Has your mum got a CPN or social worker who can give advice?
     
  12. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi,

    Thanks for the support (Sylvia you're never too outspoken for me - I respond well to straightness and tough love!).

    No, mum doesn't have a SW or CPN. We just can't seem to get them moving even the consultant has rung them (finally!) and said we need urgent help but still nothing.

    Can Crossroads help us if we haven't had a carers assessment?

    It's just a mindfield of emotions isn't it? Dad's at the end of hs tether, I'm frustrated with him but I also feel guilty because I can't help as much as I'd like, I'm angry with others for not helping out at all and sad that I've lost my mum.

    Although we did have a lovely moment last night. I took mum late night shopping for dad's birthday present which went much better than I'd thought. We got home and she was so excited to have presents for him that she launched the plastic bags at him!! I had to take her upstairs to help her wrap them and write his card - whether she'll wait until his birthday to give them to him is anyone's guess. It was the first sign of happiness I've seen in her for a long time.
     
  13. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Dear Kate,

    I haven't read through all your posts, but have you thought about your local Alzheimers branch, I go to a monthly meeting at our local Alzheimers group, and it is amazing. They will help you get all the right people involved, other members will offer you good advice because most of them have been in the same position, our group is very friendly and I have made loads of good friends that I otherwise would never have met. The group has visits from social workers, CPN's etc. and they too become friends, it really does make a big difference. You aren't pressured into anything, you can use the group as much or as little as you need.

    Love Carol
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    How lovely Kate. I hope your mother doesn`t forget where she has hidden the present.

    When I cared for my neighbour, we arranged for him to have a holiday in Blackpool, with his sister-in-law, at a hotel that offered care for those who needed it.

    He had a lovely time.

    Months later, when I was clearing his house, prior to putting it on the market after he`s gone into a home, I found 6 really big sticks of Blackpool Rock in his sideboard. He had obviously bought them for me and his carers. :)

    I do hope your father gets some help from SS soon.

    Love xx
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Nov 30, 2007
    Last edited: Nov 30, 2007
    Sounds just like the reaction I use to get from my mother if I tried to keep her in . just like someone else said as it just what use to happen to me it not worth the argument of locking the door , because when mum wanted to go out they no stopping her

    coming to team with it that you have to go with them , is bloody hard expecting the fact that life is changing
    So relate to that , because I remember the frustration I use to feel , because I never understood how heavy it can get or was

    Kate I do feel for you , because your father unloading it all on to you all his feeling of frustration , but good thing is , for his own heath, better out then in , your his sounding board like my kids where for me .

    I do hope you get assessment done so your father can get some support in taking your mother out

    I know they say this disease get worse , but in a way it gets easier on the carer because feeling of frustration more on and away , when all support network in place . god I could cry tears of relief as I look back on those days , to the support I am now expecting and receiving

    cariad thanks for sharing xx
     

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