1. calyn

    calyn Registered User

    Apr 22, 2008
    6
    Tyne and Wear
    Hello everyone,

    I have just joined today. It will take me a while to make sure I'm posting the right things in the right places so hope you'll bear with me.

    Me 82 year old dad has Alzheimer's. He was diagnosed just over 6 years ago. It took about 18 months after dad's GP made a referral for a consultant psychiatrist to come out and see him, and he has never had any scans. He was on one of the well-known Alzheimer's drugs for a few months, but couldn't tolerate it so has been off the drug for about 15 months. In his case the disease has progressed quite slowly - I'd say he's in the middle stages now. He can still do lots for himself like washing, shaving and dressing, and still sometimes takes himself off to the local shops for an hour, but mostly now feels happier when I accompany him.

    I've notice lately he occasionally mixes me up with someone else and he sometimes forgets he has a granddaughter, which is a new development.

    I feel I have a double challenge in a way as I also have to look after my mother who is 86. She has no patience with anyone who is sick. She has had a really hard time accepting my dad's illness (in fact I don't think she has yet come to terms with it or ever will!)

    Their relationship was such that dad did everything for her, and she expected that of him, so now that he can't do those things I have had to take over where he left off. It has been the biggest shock of my mother's life that dad got Alzheimer's.

    I live about 15 minutes drive away, and I've no brothers or sisters so do everything for them myself as my mother refuses to have a carer on the grounds that they will only be in the house 5 minutes and not do anything!

    I find that neither dad's or mum's relatives visit now - we have almost been cut off, except for one of dad's brothers who occasionally takes him out on the odd afternoon. My husband won't visit unless he is needed urgently, and my daughter is away at university.

    I'm sure isolation must be a huge problem for carers and their families as I think a lot of the time people are scared. Also, it is very hard to listen to someone repeating themselves over and over.

    Both parents have been offered day centres but both refuse to go.
    My mother isn't very sociable and has no friends, and dad is still aware of his surroundings and says he doesn't want to be with people who are like himself (he looked after an aunt who had Alzheimer's and remembers what it was like when he visited her in hospital). He does get lonely and misses his family, but he wouldn't go to a day centre without my mother.

    One thing that particularly bothers me is that dad has started taking things from cafes when I take him out. Usually it's just a plastic spoon or straw, but yesterday when my back was turned he took a small milk jug from a coffee shop. When we got outside he proudly showed me what he's done. I told him that if he carried on like that we could get arrested by the police, and he seemed to revel in that idea. I have to remind myself that this is the illness, not my dad, who was an extremely moral person and wouldn't have ever tolerated anyone else behaving like that. I'm not sure how to cope with that, other than not take him out!

    I feel fortunate compared to so many carers who are giving 24 hour care. I am at my parents on 5 or 6 days a week usually but at least I do come home and get a break. Also, my dad isn't violent, which must be one of the toughest things of all to cope with.

    Sorry for the long ramblings, but it is good to have found a place to let off steam and share experiences.
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear calyn.

    Warm welcome to TP, and thank you for giving us all the background information. It does help.

    I am moving your post now into the main forum, where I think you will receive more support. We do read all sections, but that area is most general and well used.
     
  3. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    Welcome!

    Dear calyn,

    Just wanted to offer you a warm welcome to TP. You do seem to have a lot on your plate, as far as your parents are concerned.

    It's very difficult to get our parents to accept help. I'm sorry, I can't come up with any magic answers for you. I wish I could.

    If your parents have been offered a day centre, does that mean they have had an assessment done of their needs?

    Hopefully, someone else will be able to give you some ideas.

    In the meantime, let rip on here any time you like.

    Best wishes.
     
  4. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Calyn

    Welcome to Tp

    I wouldn't worry about the taking of things, while out and about.

    I also had to deal with either Mum and/or Dad pinching things from cafes, shops, etc.

    People are very understanding, especially cafes. I would always return, whatever -- table number, menu -- sweets, with an explanation and an apololgy -- it was never a problem.

    Could you ask your Dad if he could go work, or volunteer! at day centre? This was the way I got Mum to go, saying they needed help at the local club.

    I know it is twisting the truth -- but if it works??
    We have to be inventive for their good and our sanity

    Best of luck
    Alfjess
    A
     
  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Calyn

    I'm so glad that you've found Talking Point and hope that it proves to be really supportive.

    You mention that your dad did everything for your mother and now he can't because he's ill (which she has no patience for), clearly because it means she can't get what she needs!! I wonder whether you could talk to your mother and tell her that although dad did everything for her, that was his choice as her husband but you have your own husband and you can't fill the role your father had. If you do this your mother will have to accept outside help. It might be a bit of a rough ride but you can use TP to let off steam!!

    Look forward to hearing how you are doing.

    Love Helen
     
  6. calyn

    calyn Registered User

    Apr 22, 2008
    6
    Tyne and Wear
    Thank you!

    Hello and thanks to everyone for your very warm welcome. It's really good to hear from others who are also going through problems.

    In reply to Chess about having had an assessment of my parents needs, we did have a lady from social services about 3 years ago. This was after my mum had fallen at home and spent a month in hospital. I don't remember too much about it now to be honest, but I seem to recall she asked about the home situation, explained about carers and the Carer's Allowance, and mentioned a day centre which might have been suitable, but we didn't follow up on that because of dad's resistance.

    To Alfjess, thanks a lot for reassuring me about the problem of dad taking things from cafes. You've made me feel a lot better. And I like your suggestion about the possibility of dad going to the day centre as a worker or volunteer helper. I might be able to work on that one.

    To helen.tomlinson - yes, I have talked to my mother and explained that now it's time to take a turn in looking after the husband who looked after her for years, but so far it has fallen on deaf ears! But I won't give up. I am often telling my mum
    things she doesn't want to hear. She can be quite difficult to deal with, but I battle on. Your suggestion to spend a little less time with them is something I had been thinking of for a while. It might pay me to take a few steps back from the situation. Then mum might just realize she has to have help from other people.

    I read somewhere recently that a lot of the problems with the elderly are to do with their life's legacy - what have they done with their lives that is meaningful - and also the fear of losing control, of resisting others making their decisions for them. I think that's true. It must be really hard to hand over control to someone else when you have been independant and capable most of your life.

    Thanks again to you all. It means a lot to feel I have support.

    Love and best wishes
    Calyn
     
  7. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Calyn

    Good morning to you:) I do think it would be a good idea to step back a pace as actions speak louder than words. Your mum knows the words and has learned to ignore them. Just gentle change in actions can help others to understand what we're saying!

    This is something I would dread. However your mum has not been independant and capable if she has needed your dad to do things for her. That is probably why she doesn't act on what you've been saying to her about taking over some of the care for dad. There is something in that life legacy thing and maybe it's to take out of it the knowledge that your mum is dependant too but only wants either your dad, or now you, to take care of her.

    Look forward to hearing from you.


    Love Helen
     
  8. calyn

    calyn Registered User

    Apr 22, 2008
    6
    Tyne and Wear
    Hello Helen,

    Apologies for the delay in getting back to you. Yesterday was not a good day and this is the first chance I've had to write.

    What I wrote about feeling you are losing control in old age applies a lot to my dad, who is still aware some of the time what's happening to him.

    My mother hasn't been independant and capable, as you say, as all she wanted nearly all her life was for dad to do everything. She is though, quite controlling of us. Always has been. She wants things to continue being on her terms.

    I'm glad you replied to me because apart from sounding like a very nice person, you are giving me the viewpoint of someone who is seeing the situation from a distance, whereas I am too involved to be properly objective.

    I've decided to try again to see if I can get dad to a day centre, but I'll probably say to him it's a community centre, and say they need volunteers, as Alfjess suggested.

    I'm going to write a letter to dad's GP next week, as I've noticed changes lately and think dad might now be ready for a day centre. His brother came and took him out for an hour on Wednesday. Next day, dad kept asking me who the young lad was who took him out (my uncle is 72). He had no recollection of him, didn't think he even had a brother - he has two. He thought he'd gone to a castle but it was actually a shopping mall. It's happened a few times lately that he hasn't recognised his granddaughter, or didn't think he had a granddaughter, and he asked where I was when I was actually sitting next to him. I think if some of the time he doesn't know where he is he might accept a day centre more readily now.

    He seems to be getting more and more frustrated by things he hasn't achieved in his life. He wants to move back to the area of town he grew up in. My mother would never budge. Is this what happens with AD?

    Yesterday he went out into the street and started shouting at the youngsters playing football. The noise they were making was agitating him and he thought they were going to break someone's windows. He did the same thing in a separate incident a week ago.

    I was particularly stressed last night and didn't feel good at all. I have to start thinking om my own health as if something happens to me I would be unable to do any caring at all. That's why I think it's time to let his GP have an update on the situation, and ask about day centres again, and we'll see where it goes from there.

    You are so right - I can't do everything for mum that dad once did, and I feel that some aspects of dad's behaviour are becoming a bit too much to handle on my own.

    Will let you know how I get on.

    Love calyn
     
  9. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Calyn,

    I think you are being very sensible about your situation..

    It's so important that your parents' GP is aware of the situation..and that you are realising that maybe you cannot keep firing on all cylinders to keep both of them afloat.

    Your parents are going to need some support..and..with the best will in the world you cannot expect to do that alone and indefinitely.

    As you say your own health will suffer..

    Do keep in touch and let us know how things are working out..

    Love gigi xx
     
  10. calyn

    calyn Registered User

    Apr 22, 2008
    6
    Tyne and Wear
    Thanks, gigi

    Hello, gigi,

    Just like to say thanks for your reply and encouraging words. It means a lot.

    Will keep you posted.

    Love calyn
     
  11. Simmo

    Simmo Registered User

    Apr 25, 2008
    5
    West Midlands
    #11 Simmo, Apr 25, 2008
    Last edited: Apr 25, 2008
    Another new member

    Hi everyone

    I'm a new member who has joined today. A bit about why I've joined....

    Mum has vascular dementia which was diagnosed in October last year, although she had been showing symptons for about 18 months before the diagnosis. It started off as little things like forgetting conversations we'd had and has got progressively worse at quite a speed. I forgot to mention she's 81 years old. Mum also suffers with arthritis, diabetes, high blood pressure and high cholesterol and is on numerous tablets for her many ailments.

    Dad looks after mum at home, he cooks, cleans and generally makes sure she's loved and cared for. Unfortunately last week mum had a fall in the house and cut her head open, Dad called me at work in a state of panic so I rushed round. I accompanied mum to the hospital where they 'glued' her head and she was allowed to go home the same day. Since the fall we've made sure that she's not left alone but I think it's all starting to take its toll on my poor dad. Mum gets very depressed and cries a lot at all times of the day, she keeps asking us to take her home, and as much as we try to convince her that she's lived in the same house for over 40 years she still won't believe us. She also asks when my nan (who died 38 years ago) is coming for her and her latest thing is saying that she's not married to my dad which is really heart-wrenching. We both realise that it's the dementia and not mum talking but we're finding it really hard and don't know how to try to comfort her as there's no reasoning with her. I realise this is common with dementia and think that we'd be able to accept it more if we weren't emotionally involved.

    I'm an only child and try to do as much as I can to help them out. I call round and dress mum before I go to work (after I've convinced her to get out of bed) then pop in again after work to see them. I've recently started doing their laundry and getting the shopping in for them and I also sit with mum on a Wednesday evening so that dad can go for a pint and get a break from it all. I'm married with a 9 year old daughter and also work full time. I wish I didn't have the feelings total helplessness that I have at the moment. I try to keep as upbeat as I can for my husband and daughter as it isn't fair on them for me to keep being 'stressed' but they're just as concerned for my parents wellbeing.

    I phoned social services at the beginning of the week and asked for mum to have an assessment. I suppose the help we'd be looking for is someone to come in and help get mum sorted in the morning and then sit with her for a couple of hours in the week to enable dad to go and pay the bills and collect pension etc. We want to keep mum at home for as long as we possibly can and just hope that we're able to get some support from social services, but I think this will probably be a long, drawn-out process as I don't think mum's considered a priority as she's already being cared for at the moment by dad.

    Sorry if I've rambled on a bit, but glad I'm able to communicate with others who 'know where I'm coming from'.

    Thanks for reading this.

    Simmo
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Simmo, welcome to TP.

    Why not start a new thread and tell us about yourself?
     
  13. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Calyn

    Thank you for your reply. I really do agree that your health is very important too and I think the same as you "if anything happens to us, what will happen to the one(s) we care for?".

    You mentioned that your dad was talking about going back to the town he grew up in. I haven't experienced this with my husband, Alan who has a different kind of dementia to your dad, but I've read others on Talking Point talking about Sundowning which is probably what your dad is experiencing. I'm sure someone will send you the link about Sundowning because I don't know how to send links yet.

    It sounds like you are taking control of the situation, as much as you can, which I think is admirable. I hope you benefit from contacting the GP.

    Good thinking Calyn. It is certainly worth a try.

    Look forward to seeing how you get on.

    Love and best wishes to you.

    Helen
     

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