1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    how often do people visit their relatives in their respective nursing homes? we only manage to see dad once a week or fortnight as i work full time and my days off are used for catching up with daily living and helping mum out [she only has me now] when we do go sometimes, he doesnt know us, which is becoming more the case, yet today i had a fairly good chat with him on the phone, last sunday however both me and mum went and he walked off back to his bedroom saying he wanted to lie down. I am well aware that dementia or not, we all have our off days but visiting him is heartbreaking at best, depressing at worst and wondered what other people think? sometimes we skip a visit as we cant face up to it
    what do others feel?
     
  2. kareng

    kareng Registered User

    Feb 5, 2004
    17
    Bristol
    I think how often you visit is entirely up to personal circumstances and feelings. I visit my mum once a week, occasionally more often, occasionally less often. We usually go out for a little walk and sometimes I bring her back to my house for tea or lunch. I find it hard to sit in the home talking about nothing, perhaps with her off in a world of her own and ignoring me. It is heartbreaking. At least if we're out walking we both get some exercise and she gets a change of scene. It's easy to feel guilty about not going more often but I've worked out that this is about the optimal pattern for me. Plus, after a week or so I really want to see her and I'm sure that shows. I know some people go much more often and I admire them for it - I couldn't do it. I love my mum dearly but I too have my own life to lead.
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Yes, it is your call how often you visit. I think the situation differs for different people at different stages, and according to their relationship with the person.

    Often I think the visit may be mostly for my benefit, not my wife's, but I'm not going to chance that, at this stage. Later, I will cut down from 6 times a week - it took a lot of heartsearching to drop a day to try and get a life back.

    Whether I'm not there a day - or for 10 days as I was last year when I needed a holiday abroad - it doesn't really seem to affect her that much. But then how would she tell me if it did matter?

    We each have to balance what is right for us. That's not to say it will ever be easy.

    At my wife's home during my visit I always try and have a brief chat with a number of the residents to make some sort of link with them, and I know that other carers of other residents do the same for Jan when I'm not there. That's nice.
     
  4. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    Yes its not easy, well i dont see any other solution really; its how Mum feels and we go on the strength of that really. She finds it very depressing and so do I but there you go it is a soul destroying illness which i wouldnt wish on my worst enemy. The sum total of it all is that he is being well cared for by people who dont get irritated with him as we used to and dont expect too much of him. The nurses are fabulous, very caring and seem to get on Ok with him which is the main thing. One day at a time i suppose!
     
  5. Jellybeanjugler

    Jellybeanjugler Registered User

    Mar 14, 2004
    6
    NJ
    HEllo, well i would like to let u all that it is up to you and your free time. I work in a nursing home. i am an activities assistant on an alzheimer lockdown unit. we have 60 beds and they are all just about full. there are many families that come in every day. there are some who come once a week. and sadly we have some that never come. i think a good idea for those of u who have trouble reminding mom or dad who you are is to bring in an old picture. thats mutch easier for them to relate to. maybe they have lost some memory especially your new haircuts and all, but its hard to forget you as children. if you bring in an old picture ask them if they remember who some of the people are. and if they do remember it may help them feel better remembering who you are. also i would like to recomend to all of you that u should bring in as many pictures as u can. the old ones of mom and dad. the black and whites. they love them and help them feel like they have some controll of their memories. and they get a kick out of talking about them. (even if its made up at least they are working thier minds) Wedding pix are a big hit. anyway i just want to thank all of you who do visit. its verry important in it means a lot to them. maybe they dont remember who you are but they know someone cares enough to visit. good luck to u all and take care of yourselfs.
     
  6. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    we have tried taking in photos but dad isnt interested in looking at them! never mind thanks for the suggestion anyway; they have now stopped his medication as he was very dopey. Did anyone see the article in the Express this week about Risperidone? it apparently is only intended for short term use with Alzheimers Disease, i wonder what the answer is???
     
  7. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    thanks for your reply, it is harder on mum i think as she finds it hard to see Dad in the state he is in thanks to Alzheimers Disease, also the fact that he drank heavily during his lifetime and the hint that this may have precipitated his condition is always in the back of our minds, there fore anger is a major factor in our emotions. I spoke to a psychiatrist at our local hospital about this and he was confident that alcohol abuse plays a significant part in the onset of dementia, so when we look back on Dads life and see how he could have made more of an effort to stop drinking, you can see why we get so angry. Dad and Mum have been married for nearly 50 yrs and the comparisons we inevitably make about the way he was and the way he is now, make it doubly difficult. Perhaps if he hadnt drunk like a fish for nearly 50 yrs he wouldnt be in this predicament now.
    I am afraid our visits are now more a duty than a pleasure and we are merely grateful to the superb care he is receiving that we can no longer provide ourselves, we have not stopped carinig by any means, but we do question why we didnt see it coming, so a lot of anger is directed inwardly at ourselves as well.
     
  8. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    I was just wondering whether to ask if anyone else felt like me about visiting. I love my husband who has vasc. dementia and is relatively young at 65 to be in full time care, but I desperately want to be free of the commitment of visiting him every day. My conscience makes me go, but I find it heartbreaking. We have been married for 40 years and since he has been in care I have been able to remember him as he was, not the difficult man I had to look after for the last few years. In some ways this makes his loss even sadder, but it is nice to have the love back in my memory. Kate34, it must be sad to feel that your Dad contributed to his illness, but I can only say that my husband lived a healthy, active life both mentally and physically, but it still got him. The important thing to remember, I think, is that it is the illness now that has taken over your Dad. and he can't do anything about it. I can't remember how long you said he'd been drinking for, but maybe he felt the beginnings of the illness long before anyone could see it and this increased his need to drink. Have you and your mum tried talking to a counsellor about your feelings? Our GP has one attached to the surgery and I've found it very helpful to talk to an outsider about my resentment and anger. Your mum is lucky to have you to share the burden. I try to build in some "fun" outings so dementia doesn't take over my life as well. Good luck. Jane
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I imagine that anyone who regularly visits a person in care for dementia wishes they could walk away from it, but as we all know, that isn't so easy.

    Jan is 63 and has had dementia since she was 50 [first real manifestation]. She has been at the home for nearly 3 years now and when she first went there I kept on washing all her clothes for the first 18 months, as well as taking food in each day. I visited 7 days a week for 2 hours each time.

    Since then I have handed over the washing to the home, and now take in only special bits of food, and generally I visit 6 days a week, for around 1 hour each time.

    To get there each weekday involves a round trip of 140 miles, taking in a full day at work as well; weekends it is 50 miles round trip.

    It takes at the very least 4 hours out of each day and is a constant energy drain that affects everything else I may want/need to do.

    I would dearly like my life back but always return to the notion that Jan has had her entire life taken from her, and I am the only person outside the home who will visit her day in, day out. I've said before that her family dumped her years ago. Well, I simply can't dump her there, even though her condition is so bad now - perhaps BECAUSE her condition is so bad now.

    From what you say Jane, you are on your own in this? That is what is most difficult and it was my position until a year ago.

    One of the key things that dementias [in particular early onset ones] do is to make the partner think that 1) the caring process could go on for 5-10+ years and how can anyone stand that 2) that by that stage the carer will be too tired and prematurely old to start any new life particularly if they have no children 3) such huge concentration on the needs of the patient means that they are the only one that you could care for so much. These weighed heavily on my mind, maybe I'm just strange.

    Since last year things have changed dramaticaly for me and the key thing is that I now have a new life outside all the pain.

    I still visit, however, and will continue to do so. This is everyone's choice to make, given their own circumstances. My new situation helps Jan, by helping me.
     
  10. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    difficult

    well i went to see Dad today and cried while i was there, this is not the man who i knew as my father, whether he drank or not as jane says is perhaps no longer the issue, but when you hear it from psychiatrists that alcohol abuse DOES contribute to mental illness you do think whether you could have done anything to stop it happening, obviously now we are powerless. He knows no one now, and i was glad my mum didnt go with me today to see him as it would have broken her heart completely. Something has to be done, if the Alzheimers organisation has been g oing for 25 years why has more headway in research not been made???
    i feel that alcohol certainly contributed to dads illness and this should be more heavily publicised as a investigative route for research.
    It breaks my heart to see him like this and i know he would hate to see himself like it too.
    I vow to remember him the way he was and its only thanks to the excellent staff that he is looked after so well and that we have no worries about his care.
    I know i should visit more often and i admire people like you bruce who visit nearly every day; i work 40-50 hours per week in the nhs myself and mum is not able to go on her own so unfortunately we cant.
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Kate
    I am with you all the way on the drink thing!

    Regarding visiting, I didn't intend my last message to reflect anything other than my own particular situation! I couldn't have done it anywhere near as often for anyone else in my own family.

    There's no 'should' or right or wrong about the frequency of visits; there's only what each person's circumstances permits them to do.

    Regards
    Bruce
     
  12. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi

    I tend to visit twice a week for about 2 hours at a time, as I work part time and also have a young son. Mum still knows me just about, much of the time is spent sitting in silence but I do try to chat. I am able to go in the morning and over luch when Mum is at her most alert and the meal gives a focal point for the visit. If Mum was compus mentus she would be horrified that i visited just twice a week! I always remembered as a child being told of one of my old teachers who visited her Mum in a home every day from 9 in the morning to 9 at night - a herione in her eyes and she would expect no less devotion from me!!! If the home was really local I would probably pop in more but it is 2 buses and a visit can take 3 hours in total and not in the sort of area I would want to catch a bus or drive in the evening, so I am limited. But I have read in a book on Dementia Care that as far as the loved one in concerned Daily Visits are the same as monthly visits. I think the answer is to do want is best for you and your family and what you are comfortable with,

    regards

    geraldine
     
  13. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    sorry just having a rant [as usual]

    Thanks for your kindness brucie and all others on here; seems like we're having a hard time dealing with the kaleidoscope of emotions that this awful awful illness brings with it
    I dont mean to offend anyone with my rants i hope you would tell me if i did
    best wishes
     

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