1. GarryNW

    GarryNW Registered User

    Dec 3, 2007
    3
    Warrington
    The title says it all really,

    MY MUM was diagnosed with dementia nearly 2 years ago but I had notice at least 2 years prior to that things were not right but I was fobbed off buy the Doctors saying it was normal old age.

    I am the only surviving child and close relative for MY MUM she lives in Yorkshire and I live in Warrington a distance of over 80miles away.

    Some of the simplest of things are made difficult from setting up Power of Attorney , Flow Food Deliveries, Direct Debit, Medication deliveries, Doctors appointments, oh god I'm banging on a little here sorry.

    MY MUM now has carers visiting in a morning and night and at lunchtimes on a weekend. She also goes to a Day Centre through the week which she loves.

    I sometimes wonder is there anything else I can be doing?

    The latest thing MY MUM has done now is she has forgotten how to turn off lights in her home, now she has been caught climbing on stools and tables taking out the bulbs. On slightly funny note she even turned off the Fridge with the switch because the light was on she said.

    You know you can have lot of friends but still feel like you the only one going through something like this.

    I know it's not going to be much longer until MY MUM will need residential care, then I will have all the worries of picking the right one as I have heard so many scare stories and with an illness like this you need the patients of a saint.


    I speak to my mum every day, It's the same conversation every day I know she cant help it as it's the condition.


    ........ at the end of the day she is still MY MUM.
     
  2. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Garry,

    Well it sounds to me as though you're doing everything you possibly can - I think you sound as if you're doing a marvelous job and are very well organised, especially as you are a long distance carer.

    From the little I know it looks as if keeping a careful eye on things and getting regular updates from carers/friends etc is all you can continue to do to monitor when the time comes that you think your mum will need residential care.

    I'm very glad you can still say "she's my mum".
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Hello Gary.
    It sounds as if you have done everything possible to make sure your mother is safe and cared for.

    As far as climbing on stools etc. to take out light bulbs, I can only suggest you replace light shades with bowl shaped ones. Do you know the type I mean? The opening is towards the ceiling. I would then label all light switches. It might work, it might not, but it`s all I can think of.

    You would have to be very lucky to have friends who understand your concerns. But you have found TP now, and everyone here, knows what worries you as we share the same worries.

    Of course she`s still `your mum`. She will never be anyone else.

    Take care xx
     
  4. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Dear Garry,

    Nice to meet you on TP. I had a similar problem with my Mum (who was also technically carer for my elderly father at home). I once caught her trying to remove toast from the toaster with a pair of scissors (while it was still on of course.....!).

    It sounds as though you are doing as much as you can, but like the rest of us on TP you are probably doing the guilt trip big time!

    I "just knew" when it was time to look for a care home. I did a lot of research sitting at my computer looking at CSCI reports on local homes, so in the long run only had to visit four before I found the ideal one. Well it was until my mother refused medication and got so violent she had to be taken to the local hospital and sectioned - but hopefully that will not happen to you.

    Interestingly out of the four I looked at the "ideal" home was the second cheapest. It wasn't so "flashy" as the others, but I just felt that my parents would be happy and comfortable there - and my father certainly is and wouldn't be anyway else now.

    I wish you the best of luck. Keep posting.
     
  5. GarryNW

    GarryNW Registered User

    Dec 3, 2007
    3
    Warrington
    Thank you all for your kind comments.

    After the latest incident with my mum, I have spoken to Social Services they have now referred my mum back to the CPN who initially said quote" we discharged her 9 months ago" Are the CPN Stupid? of corse my mum's condition is going to get worse. I feel things are difficult enough with out the bodies that are supposed to help adding to the problems.

    I just wonder what the Social Services and CPN class as an emergency evaluation. So far my mum has left the grill on on the cooker not lit over night, Same with the gas fire and now the latest light bulb incident.

    Also I cannot understand why I have to constantly battle for the basic things or remind the authorities of my mums needs.

    Up until my mum was diagnosed she had regular checkups at her Doctors for Blood Pressure, Cholesterol and depression. I have asked what is happening with this care now and to my amazement they were not aware of my mums previous medical needs

    I have now been told by Social Service that I need to ring my mums Doctors and inform them of my mums situation. Surely this should be automatically done through the CPN. Is it just me am I doing something wrong? Has anyone else had the same issues?
     
  6. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hello Gary,

    I would also like to welcome you to TP. I also think you are doing a great job and can relate to the worrying things like climbing on tables and stools. Obviously your mum remembers the lights get turned off but doesn't remember the switch, aah this is a miserable disease.

    I don't live in the UK so I have no knowledge about your concerns with your mum's medical issues. This would however be no surprise to me here in Australia.

    The bodies helping with running the show I feel at times themselves lose the plot. I hope that you can soon get it all sorted. Regards Taffy.
     
  7. clarethebear

    clarethebear Registered User

    Oct 16, 2007
    197
    manchester, uk
    Hi Garry

    Welcome to TP, I'm glad you'v found us. Sorry I can't help you, as my familys story is different from yours. However it does sound to me that you are a caring son and you are doing a good job.

    As Grannie said your mum will always be your mum, although at times it will be hard with this terrible condition. Please just keep in your mind and heart she is and always will be your MUM.

    Take Care
    Clare:)
     
  8. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    No, it's not just you and you're not doing anything wrong. I've been through all the same scenarios and so have lots of others here. The 'system' doesn't join up. You have to badger everyone the whole time. (My Mum's GP basically washed his hands of her the moment she had her brain scan results, but a stern letter to the regional health authority made him buck his ideas up. I hope you don't need to go so far as I did!) CPNs normally come under local councils, while GPs come under health authorities. Both can be mixed bag in the own right, but the combination can be unbelievably dense.

    Give everyone everyone elses' numbers, incling direct lines. Get their email addresses, and CC the others when you email one of them (email gives you an audit trail too, bear in mind). Or send faxes - you can keep the transmission reports. At one stage I carried a notebook around so I could record who I spoke to, who got told/told me what and when. And especialy who promised what when. They are being paid to provide a service. Shame we're not being paid for making them delivery it, but we can do that much. But my first real lesson was realising that expecting some people to deliver a professional service without a verbal boot up the behind was just plain naive :-( (I apologise here to a great CPN back in Surrey, without whom etc.)

    Things vary so much on the ground, buttry talking to the local AS branch and Age Concern, both of whom did some great legwork on my part when I was in your situation.
     
  9. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Hello Gary,
    Welcome to Talking Point. When my husband at the age of 58 was diagnoised whereby from taking Peter to the Doctor's - Hospital then Oxford - results and confirmation that day - A.D. I in that respect have been lucky all done in two weeks.
    As for the S.W. - useless. Local Authorities - useless. Peter was tobe placed in Unit at Hospital. With his Consultant's support he agreed that they would place Peter in E.M.I. Unit in a beautiful Care Home near me. Local A.S. Branch, Age Concern, Princess Royal Trust, Helped the Aged, have you tried any of them ?
    I wish you all the best. You only want the best for your Mum. Christine
     
  10. GarryNW

    GarryNW Registered User

    Dec 3, 2007
    3
    Warrington
    My Mum Christmas

    This Christmas has been really hard.

    I picked mum up on the Sunday before....

    I packed all the clothes I thought she would need. Arrived home and then It started. My mum was totally confused, She couldn't even take her coat off. I helped here with that and sat here down.

    Mum has lost the track of time and as soon as it's dark she thinks it's bed time. I managed to keep here up till about nine then took her to bed.

    I expected her to undress and in to her pj's ok but she needs help with that now.

    Eventually into bed and to sleep then we had a bad night. Mum was constantly pacing, I had to get up 4 or 5 times in the night to her. The look on here face was like a scared animal in the night. She was like a different person.

    Christmas eve I was tired from been up with her.... that night she was only up once.

    Christmas Day I asked mum to get a bath and wash her hair.... but she slipped in the bath I had to rush in to help and get her out of the bath. I don't know how to cope with this.....

    Boxing Day we went out to Southport..... When we got back mum had had an accident and did get to the loo in time.... she has never done this before... so I had to clean that up.

    Mum still lives at home on her own and is at a day centre 5 days a week, and a carer runs a bath once a week. I don't think my mum can even bathe herself know so god knows what the carer does.

    Mum goes home tomorrow night.... Is she safe at home in a more familiar surrounding.... Or am I just thinking that to make things easier for me.

    I realise now mum needs more care but I'm scared of choosing the wrong home, then I'm told they just drug people to stop them wondering. I feel so alone with this... I have a partner but no other brothers or sisters to lean on.



    Reading some of the post on here today I know I;m not on my own.


    Garry
     
  11. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Garry,

    I do feel for you so much. This is an awful place to be in - one that happens for most of us at some time.

    Do we move them because we are concerned about their health and safety, knowing they will hate the move?? Or do we leave them to stay at home happily, and fret constantly about their health and safety??

    Only you can really judge this. Do you get feedback from the Carers?

    The problem is that once we've overcome one problem (I saw you had some good advice about the light bulbs!), another one raises its head.

    Many people on TP have said that they use the safety of the person they love as the guide to moving into a Care Home. Once you are fearful of her safety (be it for whatever reason), it is probably time to think of moving her into care.

    In any case, I'd definitely be looking around at available places and making some plans, even if this is only a preventative measure at this stage.

    Wishing you a happy and successful outcome to this very difficult problem.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Gary

    Your mother has day care Monday to Friday, she has carers in three times a day at the weekends. So she is alone every morning, evening and throughout the night, and you are worried about her.

    If you fear for her health and safety, then the care she is receiving is not enough and perhaps the time has come for her to be in residential care.

    If you are worried about the possibility of your mother being sedated in a CH, ask your questions when you do your search. Ask about their drug policy, ask how they communicate with relatives, ask what you need to know.

    All CHs are not bad. We have had some very distressing reports but there are many members of TP who speak in glowing terms about the care homes their family members are in. Don`t forget Tabloid Journalism tends to magnify problems.

    You are the only one who can make the decision. It is a painful decision to make, but sometimes needs must.

    Take care xx
     
  13. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear Gary,can i reiterate Grannie G's post.Not all Ch are bad.The decision is ultimatley yours at the end of the day,but please don't beleieve everything we hear and see in the press and on TV about care homes.For every bad one they show they should show the good ones.If and when you decide that this is the route to persue then you have made the right start by reading CSCI reports.A good home will give you access to any information you need.love and good luck elainex
     
  14. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Gary,

    Your mum would probably functions better at home because she is in familiar surrounds, she would be far less confused. As for safer, that's a hard call to make. More than likely your mum is also confused at home but not as overwhelmingly, as in a unfamiliar situation.


    Maybe, your thinking that you want to be absolutely sure that when the time comes for your mum to be placed into care, that it is the right time. Safety has to be the main priority. Feedback from the day care centre and also your mum's carers may give you a better picture of the situation.

    Looking for care facilities is very daunting and mainly because it's a position we never wanted to be placed in, but, we are. Garry, I agree with others, start looking into care facilities there is no harm in doing this, you'll get a better all round idea of things. Best Wishes along with Good Luck. Taffy.
     
  15. Jazz44

    Jazz44 Registered User

    Dec 28, 2007
    6
    West Yorkshire
    I agree with the others Garry, start looking for a care home. We moved my Dad into a nursing home although he was assessed by SS as needing EMI nursing. They do not take people into care unless it is stressed that the sufferer cannot cope alone and you are not able to take her in or move in with her. I was once told that I shouldn't have to do that with my Dad, and my Mum got to a stage when she couldn't cope with him at home. I wonder now whether he should have gone into EMI nursing straight away as he got out of the nursing home (non-secure) and ended up in hospital with terrible facial injuries and has declined terribly since then. The nursing home decided they couldn't give appropriate care and he has ended up in EMI nursing anyway. The only thing that helps is knowing that is is at the right stage in his illness now to be in EMI nursing. Look on the CSCI reports (a bit like Ofsted reports only for nursing homes) and they will give you an indication of what the home is like. It is quite predictable really for your Mum, although very hard to take on board, that she is going to have to be cared for in a home, it is just a case of when you decide to place her their. Getting the right home is vital, one where you feel they will give appropriate care and support, and where you feel comfortable to visit. I definitely went on my gut feelings, and those were confirmed by our Social Worker (who I really trust I am glad to say). This is a very difficult time Garry, I was at the same stage earlier on this year, and very quickly my Dad has declined to quite a severe case, He most definitely couldn't take care of himself, infact he is an extreme danger to himself. Please get support for you and your wife too, this is a difficult time for you all!!!

    Good Luck!

    Jan
     
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Garry,

    Your mum sounds exactly as I thought my mum would be coming to me on Christmas Day. Mum is now in a Care Home. She didn't know how to take her coat off, but that didn't surprise me cos she hasn't worn one for about 3 months. She went to the loo and was in there ages, I knocked on the door to see if she was okay, she came out smiling. When I went in later, the toilet roll was on the cistern, and the hand-towel was on the toilet roll holder. So I wasn't quite sure what she had used to wipe her bottom! And as she has an infection of the nether regions I had to have the towel washed just in case we all caught it.

    Care homes are not all bad. Some people have found homes which are excellent. Mum's is not brilliant, lots of things go wrong (clothes get lost, teeth, glasses, slippers), but it is safe and sound, and the staff are caring and cheerful. I have seen absolutely no evidence of anyone being drugged and to be honest my mum would be first on the list for drugging in the night, cos she is up and dressed about six times every night. I am of the opinion now that it might actually be a good idea to give her a sleeping tablet cos she is now getting upset that they send her back to bed (at 2 a.m.), and at noon she is back in her nightclothes cos she has been up so long she thinks it is evening.

    You may have seen a side to your mum, having had her with you for a while, that you don't see on a daily basis, and perhaps it has shown you that she may not be coping as well at home as you think. Unless you are there you just don't know. I wasn't there with my mum, and no-one told me she was watching telly and hoovering at 3 a.m., and going to the corner shop or for the bus.

    I don't know quite how you find out how your mum is coping unless you go and stay with her for a week or so, and see for yourself. That wasn't on with my mum as she hated having visitors, so I found out her problems just in time and by chance.

    Garry, you don't need to be looking around for extra things to do, you have enough just worrying and caring. Visit your mum a bit more often perhaps over the next few weeks, or better still spend a bit longer with her on the visits you have, perhaps a whole day rather than two half days, and then you might witness the variety of confusion that she has. I certainly wish I had done that with my mum, it would have given me a better picture of how she really was. If you are concerned about her bathing (my mum had a fall in the bath shortly before she went to the CH), be there when she is given a bath and see what they do, and how difficult your mum finds it all.

    See my next post on "finding a care home".

    Best of luck, you are among friends here, that is certain.

    Margaret
     

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