1. sony

    sony Registered User

    Hi,

    I've been reading Talking Point for the past 4/5 days, I am utterly inspired by the way you all deal with this terrible disease and I am also uplifted (if there is such a word) to know that there are people out there in the exact same situation as us. Of course I would rather none of us were in this "situation" but of course there isn't much we can do about that.

    Anyway, I'm 20 years old and grandaughter to a granny with quite advanced dementia and a grandfather who has just recently (past 6 months or so) started to show signs of it. I am also daughter to their main carer. It is actually my Mum that I am most concerned about. My mum is one of 7 children, yet she is the only one who cares for my grandparents, is this the case in most families or just ours? It infuriates me so so much!! My mum has had to give up her job to care for her parents, yet her brothers and sister are "too busy" to visit my grandparents!!

    Up until about 8/9 years ago my grandparents had lived in a housing estate in our town but my dad built us a house out in the country (about 3miles out of town), he also built a smaller house nearby for my grandparents to live in as they were having a bit of trouble from youths, etc in the housing estate. My Dad did not have to do that but he wanted to make my Mum happy and she really wanted my grandparents to live in the country as they had both been reared in the country. Anyway, now 4 of my mum's 5 brothers see their parents between about 3/4 - 6/7 times a year, her other brother does as much as he can. She also has an older sister who calls over about twice a week, but can't stay long as she's "very busy"!! My Mum is under the opinion that her brothers/sister think that since she moved them out to the contry she has nominated herself to take care of them. My Mum of course would do absolutely anything for her parents, but I just feel so upset that she is left to get on with it as such. Even when my granny first developed alzheimers, most of her family thought my Mum was exagerating!! They would quite happily put my grandparents into a nursing home but that is the one thing that my Mum definately doesn't want!! My grandparents also have 18 grandchildren and me and my brother are the only 2 that see them every single day. Only some of the other 16 visit at chirstmas, some of them don't visit at all!

    Our own family life (me, my mum, my dad, my brother) has also suffered, I can notice the strain between my mum and dad. I do as much as is possible for my mum in helping her to care for them but it is difficult as I am at college.
    My Mum's health has also started to deteriorate, mainly due to stress. However, she's not getting any help from anyone. I have begged her to get a home help in but she refuses because my Grandad doesn't want one. He is major denial about my granny and doesn't seem to think there is any problems. Both my grandparents are still quite physically active, and my grandad seems to think he is still 20 and can do anything!! My Mum does all their shopping for them and when she tells them it was £20 or whatever, there is a whole commotion over the price of the shopping (they still seem to think that shopping should only cost a few shillings or whatever was used!!) and they always say they don't have any money even though my Mum get's their pension every week. Anyone have any tips on dealing with this? My grandad has even accused my Mum of stealing his pension!
    My granny is incontinent in both senses (if you know what I mean?) and my Mum has to clean both my granny and the house, I really don't know how she has coped as well as she has but I don't know if she'll be able to cope for much longer.
    I know I must sound very selfish and I do realise that it is the disease causing my grandparents to behave in the way they do, but it is still extremely hard to cope with. I love them more than anything, but it is so upsetting to see that the essence of who they are is slipping away. I think it must be that I'm that bit younger and find it difficult to cope with.

    My Mum is due to see our GP tomorrow to discuss my Grandads new behaviour but I can almost guess what they're gonna say - we can't do anything!

    Sorry, that this post has been so long and all over the place. Thanks for listening (if you got this far!)

    Sony
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Sony

    You don't sound selfish at all; it is so difficult to watch people that we love damaged by this disease, not only the sufferer but their carers as well.
    There is help out there for your mum. I'm not good on this sort of thing, but there should be a CPN involved, maybe Social Services and Occupational Therapist. We found that none of the services were offered to us, we had to ask for help; but when you are not sure what is available that can be difficult. Is the Incontinence Team involved with your grandma's care?

    Others on here will be able to give you better advice than I can.

    Take care. Hope your mum has luck with the doctor. Let us know How she gets on.

    Best wishes
    Amy
     
  3. Mirium

    Mirium Registered User

    Oct 29, 2005
    23
    Surrey
    Hi Sony, welcome to TP.

    I found it so heartwarming to read your post. For a young woman like yourself to show such love and care for your parents and grandparents is lovely.

    Like me, you will learn a great deal just by reading the posts here. How to access services, find information, invaluable suggestions and much more. We also learn a lot from each others experiences, and I am sure you will feel as though you are among friends, so do keep logging on.

    I have found the Alzheimers Society website a great source of information too especially their Factsheets on so many things we need to know as carers.

    look forward to hearing from you again soon.

    Big hug - Mirium
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Sony, warm welcome to T.P. You are to be commended for trying to see the picture from your mum's side, she really should try to get some help. The local G.P. could be approached, and at the very least, help from an Incontinence Nurse.

    A lot of families are like your mum's, wher it always seems that everything is let on one set of shoulders. Sometimes you cannot change things, but try to persuade mum to accept some help. After all if her health fails, Grandma and Grandad will end up a lot worse. Connie
     
  5. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Welcome

    Hi Sony

    and welcome to TP: I hope you will find it as helpful as I and many other have. And you sound amazingly level-headed for one so young too, if I might say so. (This 'situation' is hard for anyone to cope with, whatever their age, and your message is a model of clarity and compassion.)

    While your Mum sounds like a real saint, I think you already realise that she needs help if she's going to be able to provide support for your grandparents and keep that in their own home as long as possible. If your family life is visibly under strain, then it's time to make sure that help is found - where strain is visible, considerably more strain is probably still being kept from view.

    While your grandparents need help, there are a wide range of agencies who can be involved to help provide it. Your mother is very much soldiering on alone at the moment, and she needs some of that burden relieving. She has a right t her own life, and you - and the rest of your family - need your Mum too, so whatever you can do will be a positive thing to do.

    It may be difficult to co-opt help at first, but the GP is a good starting point, particularly if they are also your grandparents' GP. While many sufferers will never be persuaded to go to a doctor in the first place, your Mum should tell the GP what is happening as clearly as possible and see if an 'innocent' reason for a GP visit might be arranged (a regular check-up given their age, a flu jab - it doesn't really matter what).

    The accusations you mention about money are common too, I get the impression. My mother is convinced everyone is after her money, and that people keep stealing things from her: I'm afraid it's a common symptom, and the best thing you can do as far as I can tell is just to reassure them gently but often that that isn't the case.

    Good luck, and keep posting.
     
  6. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Various

    Hello and welcome.

    Your mum should definitely be looking for help from one of the agencies Social Services or community teams or whoever.

    If your grandparents have been diagnosed they should be in the system somewhere. But... if your grandad has refused help in the past they will be in a dead file within the SS system.

    Ring the SS and explain what is happening and ask them to get the ball rolling.
    Also ring your local Alzheimer's Society branch and they will point you in the right direction.

    It sounds as if you are going to have to convince your mum first, if you can't convince her yourself, get her to read this forum. She certainly need some respite or she will crack under the strain, none of us are immune from the stress of caring for our loved ones who are suffering from dementia. Although we all think we are the exception that proves the rule, and nobody is as capable as we are.

    With regard to the rest of the family abrogating their responsibility, I'm afraid that is only too common, and is a reccuring theme amonst new members, (and old ones)

    The money problem is also extremely common especially amongst sufferers in the early stages, nothing much you can do about that only try and change the subject.

    It is heartening to hear from someone of your age being so concerned about family, (I hope that doesn't sound patronising) but it is quite rare in my experience.

    Keep your spirits up and don't hesitate to post, either to question or just to get it off your chest.

    Cheers
    Barraf
     
  7. Jude

    Jude Registered User

    Dear Sony,

    Welcome to TP.

    I think that one of the very first things you might consider is to print off your first post and all the replies that you have received so far on TP and give them to your Mother. Since your Mum seems to be taking the strain almost single handedly, she probably hasn't had a minute to even consider how AD is affecting you and your immediate family. I am not being critical at all, please don't think that - it's just very hard to be objective when one is so closely involved with a crisis like this and I think that your Mum may benefit from TP as well. It really does help to know that other people are out there doing it - and very willing to give support.

    Next bit is hard. Most of us on TP have arrived at a point at some stage of dealing with this illness when we have had to ask for outside help. It is not an admission of failure to do so, although it takes a lot of courage to deal with the feelings of guilt and sadness on the way. Ultimately we have to face up to things and be practical.

    Both of my parents have AD. Before the illness hit them, they were vibrant, funny and intellectual people whom I loved and respected very much. I still do. BUT the day came when I had to decide to take over and become 'their parents' because they could no longer do that for me. And so the child became the parent to the parents, if you see what I mean.

    And this is what AD is all about. Somebody has to assume command of finances, daily living, washing, cooking, clothing, safety, entertainment and the whole gamit of other things that go to make life worth living for our loved ones and for ourselves. All that comes on top of our own lives and aspirations. It isn't an easy call and we cannot do it alone in the end.

    Carers of people with AD need help. If the carer is overworked, has little sleep and gets physically and mentally ground down, then the whole operation falls to pieces and everyone suffers in the end.

    Taking the lid of the pressure cooker is not an admission of failure. Getting help is a sensible and rational way to go. Your GP will start the ball rolling to provide care support. Do please make sure that you get every help that is available.

    There are a lot of Fact Sheets on this Forum that you can read. There is also a Helpline to answer questions by phone. You will have a local AS group in your area. Plug in to every available service that is there for you.

    Keep posting here too. We're all right behind you!

    Jude
     
  8. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hello Sony,

    Welcome to TP, I am a relatively new member as I have only just found the site but Having read so many experiences here, I am sure you will find some valuable information and perhaps some comfort from others.

    Gosh, what a sweetheart you are at 20 years old, but I can see only too clearly where you are coming from as my young daughter is in very much the same situation as you, and she too has great concerns for me as carer to my mother, although she adores her grandmother.

    Your story reminds me very much of my own experiences, although my mother has has AD now for l6 years, and it is reading postings like yours that take me back to the onset of my mothers illness and my sister and myself felt so alone in our plight, and so utterly devastated at loosing our mother to AD. Hopefully your grandparent's GP may be of more help to your mum than my mothers GP, he really is of the opinion that people get old, and if you choose to take on the care, well get on with it. It actually took my mother to fall and break her hip before we managed to get any help whatsoever. It is one great problem I feel with this disease, people simply do not know where to go for help. I personally feel GP's are sadly lacking in any kind of understanding about AD and about the stresses and strains it brings on the family of the patient, actually the whole world appear to be lacking in understanding, apart from those who have become directly involved with Alzheimer's. The people that seem to have any kind of understanding are those who actually care for the sufferer, and with this wealth of experience comes great compassion and understanding, in fact one becomes almost an expert in the field. When sadly my time of caring for mother is over, I do hope I can use my experience in some way to help others.

    Your mother must get some kind of help before she runs herself into the ground, if this happens she will be of no use to her parents or her family. I know what you are saying, like my sister and myself we battled on regardless, trying to care for our parents, and look after our own homes and family. Like us too, you say your mother does not want to place your mother in a care home. I can understand this because it has always been our one fear that we would one day be unable to cope, and the decision would be taken out of our hands. Luckily 16 years down the line that has not happened, and by the grace of god, and some help from Social Services, we are still caring for our mother in her own home. She does have 24 hour care, but we have for several years now had 4 nights a week where a carer comes in until we take over next morning. At least we can be assured of 4 nights very good rest to enable us to carry our caring duties effectively. My sister spends two days (sleeping overnight) at mums home, and then I do the next two days, and this is how our life has revolved now for many years. Two days with mother, two days at home, and on it goes.

    It is interesting to hear of the other family members, this does seem very common, my sister and I are two of five children, but the only two that have chosen to care for our parents. It is so strange isnt it how there can be children born of the same parents, brought up exactly the same, but their priorities and values can be so different. I can never understand how that can be.

    I feel sure that if the doctor is of no help, your mother could certainly contact social services, ask them to pay a visit to your grandparents and make an assessment of the situation. I feel sure that they would be prepared to put a care plan in place that would help your mother enormously. I know of elderly people that have a carer visit three times a day. In a morning to see that they are washed and dressed and given breakfast. At lunchtime to help with their meal, and evening to see that they are prepared for bed. I do feel sure there is help out there for you, although I must admit that areas do vary. ~Your mum must not be deterred by these powers that be often asking questions that are a little intimidating, as these people can often make you feel that you are actually asking for something that you are not entitiled to, and you are sometimes made to feel as though you are begging. This is very wrong of course, but often these people have the knack of making you feel that way. Your mum must be very firm, she is not asking for anything that your grandparents are not entitled to. I have often found also that these people will try very hard to persuade you to place your loved ones in homes, but if your mother definitly does not want to go down this road, then she must stick to her guns.I am sure there must be some very good care homes around, I am one of the few people that feel that there is no place like home, and there is no care to compare with that that can be given by a loving family. My mother has aquired a very good quality of life throughout her illness, but I do feel the story would have been much different had we placed her in care, although there is no way I would judge those who do take the option of a care home, often there is no alternative, through many different circumstances. No one has any right to insist on this route, but I feel it is the easier option for Social Services to place these people under one roof rather than make alternative plans that will enable them to stay in their own homes. There maybe be others that disagree with my theory, but in my experience, and I have had a lot of experience over many years, this is how I feel. Social services may also arrange for the CPN nurse to visit your grandparents,( psychiatric nurse) again in my experience it depends on the nurse as to how helpful they can actually be, but it is worth a try.

    I do seem to have gone on a bit Sony,sorry but I do feel for you and your family, and if I can ever be of any further help I shall be pleased to try and give you any information that I can.

    My mother is now 94 and in the very latter stages of both the disease and her life, she is very frail but neither my sister or myself have any regrets of taking on the role of carers and travelling the journey with my mother.We both have incredibly supportive husbands, otherwise this would not have beenn possible. If your mum can get help and keep your grandparents at home as long as she possibly can I am sure she will find it very rewarding. The only concern is that your mum is one on her own, where I have a sister who is equally as caring and willing to keep mum at home. Had I been alone, I am sure my success would not have been so positive.

    Good luck to your mum, I do hope she will take some advice from the postings here and that she will get the help that is out there. She is a lucky mum to have such a concerned daughter, you are a star. Keep up the good work Sony, I am sure your mum appreciates your support, she must indeed, be very proud of you.

    Regards,
    Edith.
     
  9. sony

    sony Registered User

    Hey again everyone,

    Sorry I’m only replying to you all now, it’s been a pretty hectic week! Hope you and your loved ones are all doing as well as can be expected!! Thanks so much for all your replies, it was great to know there was someone there to make me feel that everything is OK.

    Just want to say a few tings to you all individually:

    Amy - Thanks for your reply, social services, etc were involved at the start but have sort of taken a backseat since my grandad refused help! So, I’m trying to get my Mum to contact them again. The incontinence team is not involved but a district nurse is supposed to be coming to assess my granny tomorrow, so we’ll see how that goes!! Oh, the appointment with the GP!! It went as expected, the GP will contact this one and that one and she gave my Mum a number to ring to speed up an appointment for my Grandad to be assessed for his level of forgetfullness (she rang and they can’t see him until May!!) That was about it! Thanks again.

    Mirium - You’re right I have found it so informative just reading the posts on here, it also helps to know that my granny isn’t really doing anything out of the ordinary (if you know what I mean?)

    Connie - Thanks for the advice, I have tried to persuade my Mum to get more help but she wants to do right by her parents and if her Dad doesn’t want a home help or whatever, he won’t have one coz she won’t do anything to make him annoyed!! Argh!

    Dave W - Thanks to you also, I completely agree with everything you said but it’s an impossible situation with my Grandad as he refuses all help as “we can manage fine on our own” he just has that old-fashioned attitude! I hate to say it as I adore him but he seems very selfish to me, he doesn’t realise how much my Mum does or how much she is struggling and believe me we have tried telling him, I get so frustrated with him!

    Barraf - Hi, yes I think because my grandad refused help in the past, social services have practically thrown their file out!! I hope to be able to post on a somewhat regular basis but I’m quite busy as I ‘m doing a degree in photography. But I’ll call in whenever I can! Thanks.

    Jude - Thanks for your advice, my Mum is not very computer literate, so I have been telling her and my uncle about the posts I’ve been reading and I have also printed off some of the factsheets. I understand what you mean when you said “BUT the day came when I had to decide to take over and become ‘their parents’ because they could no longer do that for me. And so the child became the parent to the parents, if you see what I mean.”, my aunt works in a hospital for elderly people and she has a saying “Once a man, twice a child”, which I think is very very true!

    Edith - Thanks for you reply also, I’m so glad that you and your sister have been able to care for your mum at home for such a long time, you must be proud of your achievement. I know what you mean about children being born of the same parents and being having completely different outlooks on life, it is puzzling to me also! I try to lighten the mood by keeping my Mum going that since she only has 2 children (Me and my brother) that when she gets old she’ll only see my brother every Christmas!! I know that won’t happen (even if he doesn’t go to visit her often enough - I’ll make him!) My Mum won’t contact her brothers to tell them to visit more often coz she feels like she’s begging!! Even when they do visit they’re not being useful, they sit up expecting my grandad to make them a cup of tea!! I’m sure you and your sister have become stronger people for being carers to your mother, I feel I am stronger and more rounded by being involved in my grandparents life, they have/maybe that should be had so many great stories and advice for me as I was growing up. I feel that everyone should have their grandparents in their life. Thanks again. xx



    We had a bit of a session today! My granny goes to bed in the afternoon and when my Mum went down at 3pm to see if she was up, my Granny told her she was going home “because that man in there was being nasty to her” (that man being her husband), my Mum said “what man?” and my granny said “That man who lives here”, Mum said “He’s your husband Joe” and my Granny gave her a look that could kill and said “I’m not married to THAT man!” and was getting very angry. So, my Mum told her that she’d take her home after they got a cup of tea. But that still didn’t settle her and she just walked out through the back door. My Mum left her to see if she’d come back on her own (coz she normally comes back saying she didn’t have a key plus we live in the country so she was in no danger from traffic, etc.) but she didn’t come back. So my Grandad decided he’d go out in the car after her, (on his own, he didn’t want my Mum to go with him[he shouldn’t even be driving!]). He picked her up about just over 120metres from the house and took her for a spin. They came back after about an hour. My Grandad got her settled and walked up to our house (2mins away) and told my Mum that it was her fault that my Granny was always looking to go home, that she “does too much for her”, he insisted that if my granny had more to do about the house that she wouldn’t be looking home!!! This has really upset my Mum as she is always trying to do her best for them and if she didn’t make the dinner and clean the house my granny certainly wouldn’t do it (she used to be extremely house proud but now it wouldn’t matter if the house was stinking!), so she has threatened to not go down tomorrow which is very unlike her just to let my grandad see that they can’t cope without her. He is in such denial its ridiculous!!

    Something lighter though - I was down in my grandparents at the weekend and was in the kitchen with my granny, I came across a tub of ice cream that had been left in the cup board for quite a while and had obviously melted, so I set it in the sink and ran some water into it to dilute it, my granny looked into the sink, poked her finger in it and said “Whats that?” I said “It’s just some ice cream that melted”, she turned to me and said “Ach, thats too bad you let it get melted like that!”, I just had to smile and say “Yeah, I’ll have to be more careful next time!”

    Better go, have went on too long again!!

    Love
    Sony
     
  10. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Sony,
    Good to hear from you again. The episode with your granny sounds so familiar. We used to have the same with mum, it would start at about 7pm and last about 3 hours. She used to threaten to call the police, and dad at times had to stop her phoning. Or she would go round to the neighbour; she seemed to recognise my dad from the past, but couldn't see why he was in her house. Sometimes I could talk to her on the phone and eventually she would come back, other times I would go and persuade her to go to bed. The following day she would have some recollection, though very hazy, because sometimes she would say sorry to dad for being horrible.

    Just stick with your grandad, it is very difficult to accept that the person that you have shared your life with has dementia. I am sure that in his heart he knows the truth, but at the moment he is trying to blame your grandma's condition on anything or anyone he can. It is a self defence mechanism, gradually he will have to accept the truth.

    It must be so difficult for your mum. She too must try and remember that it is your grandad's fear that is talking. Maybe a little space might help your grandad accept the severity of the situation. I don't know.

    Just keep encouraging your mum to get help. Eventually your grandparents will have to accept it.

    Take care
    Amy
     
  11. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi sony,

    It sounds a bit like your grandmother is doing something called 'sundowning' - showing certain patterns of behaviour (asking to go home is quite a common one) in the late afternoon/early evening.

    There have been some good threads on this recently:

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=2706

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=2724

    Some of these threads have links to articles about sundowning, including advice on ways to manage it. One article mentions trying to avoid afternoon naps as it might give the person with AD an added boost of energy at one of the most difficult times of day.

    This must be so difficult for your mother to do with very little assistance except from those family members who choose to be involved. There are so many unique aspects to looking after someone with AD and it can take a lot of trial and error to get it right (and then something changes and it seems like it's back to square one again).

    Getting access to some expert advice as well as some assistance with things like housework seem to be priorities.

    Do either of your grandparents get attandance allowance? You can read about it here:

    http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm

    It might or might not play well with your grandfather, but if he's keen on saving money he might like to know that they could each qualify for a payment of between £40 and £60 per week (it has two rates of payment depending on the level of assistance needed). Your mother could possibly also qualify for carers allowance.

    You can get the form from the DWP website and do it yourself (or ring and ask for it to be posted as the date of request will be used to calculate back payments). It might also be a possible route to getting the Social Services involved again as social workers are very good at filling out those forms to get the maximum rates.

    Take care,

    Sandy
     
  12. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    HI Sony,
    I think you are a wonderful daughter to be so sensitive and caring. I am in your Mom's spot only not as progressed. Lately I have been very stressed and I know how awful that can be.
    Do encourage her to get some respite help or home help, whatever is available to her.
    Second, there is a book that really has helped me understand and communicate with my Mom. The Validation Breakthrough by Naomi Feil. Read it if you can and give it to your Mom.
    My Mom also forgets her husband and it is so sad and hard on all of us. How awful it must be to wake up and wonder who that old man in your house is! It comes and goes with Mom. And I also have many siblings but am the only care taker. It makes me mad that they can go on with their lives and I have this responsibility but honestly I wouldn't have it any other way. I am best suited for this job.
    Take care and God love you for being such a grand grandaughter!

    Debbie
     
  13. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hi Rummy,
    Just reading your reply to Sony. I was interested in the part where you talk about your siblings not taking part in the caring and how it makes you mad. Being in the same boat I share your sentiments, my siblings too make me mad but we must not dwell on them or we shall become old and bitter. Like you I too would not have it any other way, and that was a very good statement, "I am best suited for this job" Looking at it that way from my angle I think it is an excellent way of looking at it, and it made me feel somehow better when I read your posting. Perhaps like me you also feel that really and truly they are missing out on the priviledge of caring, and it is good to look back and feel that there was nothing further you could have done, and you did everything to the best of your ability, and more importantly you did it because you wanted to. There are so many rewards caring for my mother and through all the ups and downs, stresses and strains, all the frustrations and difficulties, I can honestly say that I have no regrets about taking on this roll so many years ago. Sadly my role is coming to an end, my mother is 94 and after having alzheimers for l6 years I look back over the many years of caring and none of it was as difficult as the emotions I am going through right now watching my mother deteriorate day by day, I am preparing myself for the inevitable, but find this the most difficult thing that I have ever had to face. I adored my mother, and I adore even more the person she has become.

    Regards,
    Edith
     
  14. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    various

    Hi Sony,

    Thank you for replying to each one of us. Just keep soldiering on and supporting your mum, you are doing a fine job, it is admirable in one so young.

    I had to smile reading your posting about your grannie wanting to go home. It takes me back many years to mums early stages, she was always asking to go home, she would say it Oh 50 times a day, the problem was, she was at home, and that is even more difficult to explain. I am pleased I can look back on these things that were, at the time, enormously frustrating, but now I just smile at the memory. The other question mother repeated perhaps 20 times in one hour was "what time is it", I remember when I would become totally frustrated after about two hours of this repetitive question, I would just look into mums lovely face and say "what time would you like it to be mum" and she would just laugh.

    Kind Regards,
    Edith
     
  15. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Thanks for that Edith, I need the boost every now and then ! Wow, you have been hanging in there a long time with your Mom. My Mom in 76 and had AD about 8 years. She is in the advanced stage now but is just now showing signs of needing extra help She is a tiny thing, only 80 lbs and about 4 foot 4" tall and I wonder how such a tiny body can keep going. I just can't imagine another 8 years of her declining. Well, I know I'm jumping ahead and should do as Brucie says, live one day at a time.
    I'm so sorry your Mom is getting worse, I know I will feel the same when I get there. Take care.
    Hugs,
    Debbie
     
  16. ludwig

    ludwig Registered User

    Feb 8, 2006
    28
    Hello Sony,
    I'm a veteran of one day on this site.
    I joined yesterday and finished up in tears after reading just some of the notes here. A bit difficult for a big bloke in his 50s at work but to read about people going through what we have when you felt quite isolated is wonderful!
    My mum is 80 and is in the mid stages of dementia. I'm one of her three childrenwho work as a team to keep her in her own home as long as possible, even working together (we have a lead carer/medical, I'm POA finances/ oddjobman and my big sister is putter to bed/gardner) can be very stressful. We could have fallen out on many occassions but have managed to muddle through.

    I think the crux here is your mum, she seems to be shouldering so much although well supported by you. I do think your mum should talk to her siblings (if she can manage to be assertive) as well as the outside agencies etc. Even a bit of give on their side could potentially help a lot.
    The situation can be truly awful at times, we've been accused of theft, not caring about her, being a disgrace to my fathers memory etc etc.

    You are doing a cracking job, look after your mum and remember you're not alone.
    Keep smiling
    Ludwig
     
  17. Brakes

    Brakes Registered User

    May 22, 2005
    3
    Bath
    Various

    This is my first message. My dear wife Stella is 64 and whilst physically she is in great shape, mentally she lives in another world. My big problem at the moment is that she always wants to go out. I take her 4 or 5 times a day as it is, but it is just not practical to take her more than this. Many times she gets very distressed, when I tell her it is just not possible to go out. Secondly, her mental deterioration seems to be moving very quickly and I can envisage that by the end of the year she may not know me. She does not really know our 3 grown up children now. Has anyone any simple ideas for dealing with these problems. I would love to hear of them.
     
  18. ludwig

    ludwig Registered User

    Feb 8, 2006
    28
    Hello this is my second day on the site and my third message already!
    My mum is 80 and has had dementia for over a year now, she also wants to go out much of the time. She also does things like insisting on me driving to a local takeaway on arrival after driving 100 miles to see her, I then get it and she eats two forkfulls and gives the rest to the cat!
    My advice is that you must look after yourself first. If you are her prime carer and are stressed out/knackered, you can't possibly have the patience necessary for her. If it cant be done or is not realistic you must handle it as best you can but DONT do it.
    I find it really hard to sit with my mother and hold her hand, talking to her like a child. But arguing with her does no good, her logical faculties departed long ago. I wish I could say I always have lots of patience for her but I dont. We've had some awful rows but thankfully we always make up soon afterwards.
    My two sisters and I have worked together to keep mum in her own home but we have agreed that once she consistently does not know us, the best thing is to put her into a home. From your perspective surely this is the right thing too? Its awfully hard but when she doesn't know you consistently isn't it better that her everyday needs are taken care of and you can spend some quality time with her as and when you can and she is able?
    I obviously can not fully know your circumstances but thats what I would suggest.
    Keep smiling
    Ludwig
    PS I've already found talking on this site really useful, please keep talking. Youre not alone although it quite often seems like it I know.
     
  19. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Brakes,

    Do you gave a garden? We had a chain on the gate so mum could not open it, but she would wander in and out the house constantly. Do you have any home care for Stella? We used to encourage the carers to go out for a walk with mum ( as she was physically fitter than most of them, they used to complain that she walked too fast!) Do you drive, and is Stella happy in the car? Mum and dad used to drive all over, sometimes revisiting significant places from the past; dad used to find the driving more relaxing than trying to contain the situation in the house, and frequently used to stop off at my house for a cuppa.

    It is difficult when you feel that your loved one may not recognise you, but we still know them. My mum is my mum, come what may, and I don't know for certain that somewhere within her there isn't some sense that I am her daughter. But it doesn't matter anyway, because I love her. I do say to her my name and tell her that I am her daughter and in earlier stages we used to try and reinforce things with photographs.

    Well I've waffled enough.
    Take care.
    Amy
     
  20. EDITH

    EDITH Registered User

    Jan 26, 2006
    24
    Hi Ludwig,
    It was interesting to read your postings. Your second posting told how you and your two sisters have agreed that once your mum consistently does not know you the best thing is to put her in a home. Why would you think that way? I can understand placing your mother in a home if the family are unable to cope, but not for the reason that she does not consistently know you, forgive me but I dont see the logic in that. And how will you truly know that your mother deep down does not know you. My mother is now in her l6th year of having alzheimers disease and my sister and myself have cared for her 24 hours a day for many many years. After all this time I never for one moment even think that my mother does not know me. She may not have the ability to think "this is my daughter" but she does know that I belong to her and I am the person that loves cares and cherishes her, making sure she gets aquires the very very best quality of life posssible in her condition. One sure way alzheimers sufferers begin not to recognise their family, in my view, is when they are placed in care and see far less of the family than if they were being cared for at home.

    I can only speak from my own experience but if is there is the slightest possibility of being able to cope at home with an alzheimers sufferer then I would say go for it every time. The one to one care, the stimulation, the normality of being in ones own home, is by far the best remedy for a better quality of life and greater preservation of dignity, this is of course dependent on whether family members are able to take on the role of carer. In many cases this is not possible, but for those who can, I believe there is no finer road to go down.

    I think the posting from Amy says it all. Quote "It is difficult when you feel that your loved one may not recognise you, but we still know them. My mum is my mum, come what may, and I don't know for certain that somewhere within her there isn't some sense that I am her daughter. But it dosen't matter anyway, because I love her." (So very true Amy, you really put that so well, you hit the nail right on the head there, these are my sentiments exactly.

    Hope you will not mind me commenting on your posting but I felt that I would like to mention how I felt about AD sufferers and recognition of family. Perhaps I am lucky in that I am a very tactile person, and even in mothers extreme advanced state we still have lots of sitting holding hands, loads and loads of hugs and kisses and these help me get through the devastation of this terrible cruel disease.

    Good Luck whatever road you go down.

    Edith.
     

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