Just some advice for a newbie

Discussion in 'ARCHIVE FORUM: Support discussions' started by Linda M, Oct 4, 2004.

  1. Linda M

    Linda M Registered User

    Oct 2, 2004
    17
    Birmingham
    Hi Everyone,

    First a sincere thank you - over the past week this board has been a great help in trying to understand what is going on with my great aunt. Sorry if what follows is a bit of a ramble ...

    My aunt is 86 and last weekend ended up in A&E after falling in her kitchen. She had a badly cut hand and some bruising but OK really physically - nothing broken. They had to cut off her wedding and engagement rings but she didn't seem too concerned, when I know that a couple of years ago this would have really upset her. (we got them fixed and she now wears them on a chain until her hand heals).

    She cannot recall anything about the fall (we think she was lying on the floor for a number of hours before being found). To explain, she lives alone, all her neighbours are elderly, in poor health or have passed away and I live the nearest (about an hour's drive away). It was sheer luck I had decided to visit that day and luck that my other aunt couldn't get hold of her and asked a neighbour to go and check on her.

    Before this happened we were at the stage of monitoring her as a lot of strange things had happened and a mini assessment had been carried out by a really helpful community health nurse. She scored 26 and I felt that was pretty good and wasn't too concerned initially. However the real worry is that she has been wandering a lot at night, is convinced she has people living with her, has fallen a few times and - most worryingly - just not eating or drinking enough, so much so that she has dramatically lost weight. Also setting the table and cooking meals for people who were not coming. Some of this I have witnesses and other incidents told to me when I went to see neighbours.

    In the hospital she veers from a calm acceptance to packing her bags to leave and saying there is nothing wrong. Tonight she was the best I have seen her over the past week, but when I went yesterday she thought it was the first time I had visited and asked me about the house where she grew up.

    So to my questions ...

    She has been in hospital for a week and I have been fortunate in that social services seem to be taking the situation seriously. A risk assessment is taking place this week which I am attending. Are there key things I should ask and how do I approach things if she decided she wants nothing to do with carers coming into the house? (this is a real concern as she is reluctant to accept help even from family). At the moment 3 times a day is being suggested, subject to the risk assessment. Also, if they say Ok to carers and she says Ok what advice can anyone give to deal with her coming home? My mum and another aunt are happy to be there for the first few days but unfortunately none of us are in a position to be able to pop in every day.

    It has taken a fair bit to get other family members to take on board that this situation is more than a blip. But at the same time on one of her good days I wonder if it's me getting things out of proportion! From what I have read here this feeling is not unusual?

    I have lots of questions and worries and concerns but some advice for the next week or so would be great just now.

    Also, anyone know roughly how quickly (or slowly) care gets put in place? I am anxious of raising expectations with my aunt as I know she does want to be at home (even though sometimes she thinks she is at home).


    Many thanks and best wishes to all.

    Linda M.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Linda, so sorry to hear about your aunt and the worries you are now faced with. Firstly, your feelings are definately not unusual, they are the worries of someone who cares. SS say your aunt needs 3 visits a day, they have to get that set up before she can be discharged (so I have been told) so insist this is all ready to go before you sign any release forms. Find out if they will be ensuring she is eating properly, if neccessary they should prepare/heat simple meals for her. (Meals on wheels or Whiltshire farms may be useful to supply these), ask what they have planned, times etc, and what they expect the 3 visits will be to do for your aunt. (It will probably be AM to help her get up, washed, and ensure breakfast is taken, lunchtime a check call for toilet and lunch, evening to help to bed, hopefully they will have given her a sarnie for supper too if she is not doing it.)
    From what you say, it would seem your aunt is clearly confused. I would think this is obvious to the hospital staff too. They should have a representative at the meeting to say what they have observed. It is vital you explain the family set up, that she will not have someone with her constantly, if you don't, the buck can easily get passed to you!
    Also, if it is suggested that your aunt really needs to be in a place of safety, 24/7, how will she take it? How will you take it? Have you discussed this possibility with other family members and what will you do when she does need this even if she doesn't need it yet.Will it be a home or will she go to live with someone in the family? You really need some kind of careplan that your family all agree on (even if your aunt doesn't ), because in the future this agreement on her care will be needed. There are many more issues that you will have to face, hopefully you will find some help here as we all are on the journey you are starting. Thinking of you, keep posting, love, She. XX
     
  3. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi Linda,Sorry to hear about your aunt and i dont feel you are blowing it out of proportion,i have been through the same thing with my mum A/D crept up on her slowly and we just put it down to old age shes 91 but she had a fall 2yrs ago and this seemed to speed things up . She now lives with us and i care for her 24/7.All i can advise at the moment is do not agree to her coming home with out a full care plan in place no matter how well she seems,that is what happened to us and 2yrs down the line we are having to battle to get the support we need.On agood day with mum you could see her and never realise how confused she is,but on a bad day she cant even remember her name. you are starting on a long road so just take it a step at a time. STORM
     
  4. Jude

    Jude Registered User

    Dear Linda,

    Please do have a look at our Initial Pack for Carers on TP. That may help you, as well as the other Fact Sheets. A call to the AS Helpline might also be a good idea too.

    My initial reactions are safety, food and supervision since you are some way away. It was so lucky that you decided to visit, or the situation would have been so much worse!

    Whatever, you do need to get a secure and regular routine in place asap as well as looking at a Nursing Home situtation. Sheila has pretty well covered most of the immediate needs for now.

    Good luck and keep posting if you need further help.

    Jude
     
  5. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hello Linda

    have to really stress whats already been said - whatever happens don't let the SS know that there "might" be someone else who can "maybe" help. From bitter experience I know that you then move very rapidly down a very large pile!

    Kriss
     
  6. Jude

    Jude Registered User

    Dear Linda,

    Wise advise from Kriss here. It's a 'need to know' basis - ie: they need to know only the basics. Do not give them an out....!

    Best wishes,

    Jude
     
  7. Linda M

    Linda M Registered User

    Oct 2, 2004
    17
    Birmingham
    Re: Advice for a Newbie

    Hi again,

    Thanks to everyone for their advice. It is all much appreciated. The risk assessment is tomorrow afternoon and I had a telephone chat with the care manager today to get a general feel of what would be discussed. I am keeping my fingers crossed my aunt is having a 'good' day and some understanding of why we are having to go down this route. I feel awful in some ways for bringing people into her house and suggesting things I know she won't like, but know that I would be more worried if she was sent home from hospital without any care in place.

    I can see that cooking is going to be a bit of an issue - my aunt thinks she can do it OK but I feel she needs some help. But in my mind I balance this with the fact she is not eating and if she isn't doing that herself she needs someone to make sure she does. That's my logic anyway.

    The other issue is keys - she has locked herself out of the house before and has turned up on neighbour's doorsteps at 11pm asking to be let into her house (having pushed her own keys through the letterbox of her home five minuts before!). I'm advised a key safe would be an option but it needs someone close by to be involved. Not sure that the neighbours she does have would be keen and the one I would trust has Parkinson's and so doesn't keep too well herself.

    Anyway, we'll see what tomorrow brings. Thanks for all the support. I'll let you know how it goes...
     
  8. Jude

    Jude Registered User

    Dear Linda,

    In many ways it would be better to wish for a 'bad' day tomorrow so that the assessors can see exactly what the problems are. Still, I hope they are tuned it enough.

    Do try to have a private conversation with them later on and not allow them to discuss things in the 'third person'.

    Very best wishes and good luck.

    Jude
     
  9. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Meals

    I understand the difficulty in accepting help with meals so well. My Aunt was exactly like this and it wasn't until the very last that she agreed for someone to pop in and prepare what she wanted them to prepare - For goodness sake don't mention "meals on wheels" .

    Sadly, for my Aunt, the very last was just that. Having got her agreement (and we all know that nobody will do anything without that agreement) and arranged for a meal the following day, the carer who called in the morning found her very unwell and from there she went to hospital and from there directly into a care home.

    Since having regular meals her physical health has improved beyond any hope we could have had. Indeed back in April I couldn't see her being alive in the fall. Now she seems to have regained the strength of an ox and may well go on for many years though I realise the next downhill step of her form of AD may be around the corner.

    Who knows, had she accepted help sooner she might still be at home albeit with help.

    I hope you get the support today that you need, good luck

    Kriss
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Linda, inclined to agree with Jude here, a "bad" day would serve you better. Have you looked at our advice sheets yet? They are full of all sorts of relevant information on many topics. Then, if you want more of it is not covered get on here girl? Hope all goes well, do let us know, because we are all with you in that meeting in spirit, love She. XX
     
  11. Linda M

    Linda M Registered User

    Oct 2, 2004
    17
    Birmingham
    re Advice for a Newbie

    Hi All,

    Just to let you know that the assessment was Okish. On the plus side, the care manager, OT and hospital staff were really helpful and gave lots of advice and help and my aunt seemed to be able to chat OK and didn't get upset about being back home and then having to leave to go back to the hospital. I'm also glad to say they discussed everything in front of her and I had an opportunity to chat to the care manager myself too.

    My aunt has accepted she needs some help but doesn't seem to quite work out how all the people and all the help fits together. For example, she said yes to us cutting off the gas (even doing basic stuff in the kitchen whilst everyone was there she left the gas on) and yes reluctantly to a microwave instead but 'yes', then 'not sure', then 'no' to meals being either delivered or brought in. A bit frustrating to say the least.

    We all explained at length having an alarm round her neck, the need for carers to come in to check on her but when asked if that would be OK said she would have to think about it or (a lot of when pushed for an answer) 'I suppose I could give it a try.' Is that good enough for a yes do you think?

    Anyway I then went back to the hospital and we went for a walk to the restaurant for a cuppa and a chat. I tried to go through everything again and emphasise that this was all about her staying in her home but being safe. She kept telling me the doctor said she could go home on Friday and I kept saying that it would take longer than that to sort out the carer etc but it was as if the more often she told me she could go home on Friday the more it would come true. Unfortunately they can't give me a date yet but I couldn't tell her that.

    They've moved her tonight to another ward in the hopsital (she has been on an orthopaedic ward for the past week such are bed shortages) and I fear that she will try to make an escape bid but what can I do?

    I'm away on a long awaited holiday on Friday for a week and my partner and I are determined to still go as I especially need a break. Other family are primed to visit and sort out the gas etc next week.

    Not sure where we go from here - I think we just have to try it as she has reluctantly agreed to have a carer in but think the food issue will take time to sort out.

    As a family we are now wondering about what to say to her regards early dementia. I have tried to tell her (when I think she is understanding it) that sometimes she forgets things and places and when that happens we need to make sure she is OK.

    Not sure if it's the right or wrong way to say it?

    Anyway, thanks again for all the advice and support on what has been quite a sad day. I really wanted to say she could go home this weekend but I know it's not possible yet.

    I'm very lucky - I have a partner who is being very supportive and listens to my worries but this board has really helped too. It's let us know that there are lots of people grappling with this awful situation and that it's Ok to feel frustrated, sad, uncertain and, I guess, guilty.

    All the best
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Linda, glad it was a fairly good result. If you can, let the SS employed carers take the strain for a bit at least, that way, they will see for themselves exactly what the problems are with your aunt. If you jump in and rescue her, they will never see the big picture and you will always be rescueing. A hard lesson, one I learn't to my cost so I don't want you to do the same! SS can't let her go till the package is all in place, (they have ways and means of getting these things done that are not available to us mere carers!) Your aunt may well have been moved to a ward that can more easily rehabilitate her. It is not up to you to make sure she doesn't do a runner, it's up to them to watch, they know her history now. Go away and enjoy your break, you and your partner are entitled to live your life too you know. Love, She. XX
     
  13. Chesca

    Chesca Guest

    Dear Linda

    Say nothing to your aunt about her losing her mind to dementia - she already knows, she doesn't have a name for it, but she knows and in the knowing she's also afraid. Don't forget she didn't get to this age without seeing some of what she is experiencing now for herself. The only thing you can do is what you are doing: love her and support her where you can, but also respect that she is still your aunt and has a voice and rights.

    The people who assess your aunt's mental state will not accept that you speak for her. It is the only medical situation in which you will experience it; as explained to me during Mum's assessment. When I so wanted to speak for her, I was advised by her consultant that this was an environment when only HER, Mum's, interraction was to be recorded and valued. There is a method in their madness......and that of the patient!

    If you visit day care/respite centres you will often find a sitting room decorated to reflect the time in the life of the users (mostly in their 60/70s+). There will be a fire place, with a companion set, an iron that doesn't look like a modern-day cycling helmet, etc, and period decor and furniture. No TV for a start! This is where they 'GO HOME'!.

    It always amazes me that people think the answer to their immediate problems is that of technology. If you can remember that most of us leave tuning the CD/Video/Microwave, the computer ('Dad you would find it such fun, there's a new world out there') to children, we now want our beloved technological dinosaurs to suddenly become au fait with the electronic age. They can't. You can buy it, demonstrate it, use in their presence - it means nothing. The only use if will serve will if she has carers coming in who will shove something in and wait for the ping!
    Consider: if you can't remember who is coming to dinner, who your loved ones are, or your house keys, please don't expect a dementia sufferer to cope with a learning curve that defeats most of us at our most rational.

    It is not possible to have a reasonable conversation with somebody who is losing their mind - at least so my partner says to me on a daily basis!

    I hope all of this is not too negative but please don't try to reason with the unreasonable - it's the road to hell, guilt, resentment. You're doing fine with love and support.

    Lots of many good wishes
    Chesca
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Chesca's words are absolutely correct and I wouldn't add a single word to them.

    Her first paragraph is particularly true.
     
  15. Jude

    Jude Registered User

    Dear Linda,

    Nothing that I can say further, except to wish you a very enjoyable and relaxing holiday.

    Bon Voyage

    Jude
     
  16. Linda M

    Linda M Registered User

    Oct 2, 2004
    17
    Birmingham
    Not quite on holiday yet but nearly!

    Hi,

    Just a quick message to thank all those who have posted messages - all of them very much appreciated and exactly the kind of comments I need. I got a call from the OT today who said that the work they did with my aunt in the kitchen (making tea, heating up some pasta etc) gave them a good idea of where she is having difficulties. Hence, they are anxious we get the gas cooker disconnected asap. I do feel, as has been mentioned, that it's time for me to step back a bit and let SS do their job. That's what I'm going to try and do now. Will keep you all up to date and thinking of you all.

    I'm going to Scotland (my homeland) for some seaside air and to clear my head!
     
  17. Chesca

    Chesca Guest

    Dear Linda M

    Scotland! I'm a bright shade of puce with envy...I know others go green but who said I had to conform? One of my god's acres is Scotland. Hope you have the very best of a break and gain some peace of mind. Give my love to the Trossachs - both Mr and Mrs - they were always good to me!

    Lang mae yer lum reek
    Chesca
     

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