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Hi everyone. just moved mum into sheltered housing

Discussion in 'ARCHIVE FORUM: Support discussions' started by JulianneGreen, Feb 21, 2005.

  1. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    Hi!

    I havent posted for a while cause things have been so hectic but things are going both great and awful all at the same time. The good news was that mum finally agreed to move, and we moved he into a warden controlled complex last night. the bad news is that she was histerical today, crying, grabbing me, begging me to take her home. IT WAS UNBARABLE. But shes a little better now thanks to a visit from the social worker, doctor, warden, carer, myself, my partner and my cousin. she wandered out this morning without a key. luckily the cleaner found her and set her up in the day room till i arrived. but as you can imagion its been awful.

    Need advice about wandering, how to cope with her, and how to help her remeber where everything is. Those of you who know about me, i have 4 kids and am an only child. there was no room for her to come and live with me. i wish i could.

    Anyway take care, hope everyone is fine.

    Julianne x
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Julianne
    Well done on what you have been able to do. I know it is terribly difficult.

    What follows is just my thoughts - I am only an expert on my wife Jan's condition!

    I hate to be a party pooper, but it sounds to me as if Mum is really past the stage of sheltered housing being the solution.

    If she is confused and wandering, then no warden would expect to have responsibility for her, and unless they had agreed to Mum's specific needs, then should not be expected to be responsible.

    You say "Need advice about wandering, how to cope with her, and how to help her remeber where everything is. "

    Wandering - this may be confusion at being in unfamiliar surroundings, or sundowning. If her dementia is beyond a certain early stage, then even surroundings that have been familiar for years or decades may not be familiar to her. Totally new surroundings never may become truly familiar. She may be trying to get back to a place way back in the past, or even a place that may never have existed. She may also simply be going through short-lived confusion at being someplace new. Time and close observation will tell.

    Coping with her? Again, depends on the stage she is at. Mum may require more care than can be provided in her new location, or the old one. As it is early days there, again close observation around the clock will determine her needs.

    Helping her remember? I would repeat the mantra - depends on the stage Mum is at. Beyond a certain stage you won't be able to help her remember, especially to remember things that are new to her in the new place.

    I'm sorry that pretty much all of what I have written above seems pessimistic. I don't know your Mum's precise condition, and even if I did, I am not an expert. I am simply trying to figure what I would think if I were in your position. My first concern is naturally your Mum's safety. Then I'm concerned about you.

    Sounds like the social worker, doctor, warden, carer, yourself, your partner and your cousin need to talk together or separately to get a consensus. Clearly the doctor - ideally the consultant making the diagnosis of dementia - is key to this, as is the Social Services department.

    Take it slowly. Give her time to settle, if she can do that. Keep in close touch with the warden regarding her progress. I think you will find out pretty quickly if the sheltered accommodation really is a practical proposition.

    Very best wishes
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Julianne, My heart goes out to you as my own Mum was very disorientated when she too moved into sheltered accomodation. From what you say, it appears that the concensus of the professionals and you all as a family feel that your Mum is not yet ready for more than this, am I right? If so, then there is a good chance she has enough ability left still, to adjust to her new surroundings, even if it is not for that long a period of time. My Mum coped, all be it with a lot of back up, for two years. With regard to the wandering, Bruce is right, the warden could not keep tabs on her. I made sure Mum always had her name and address with contact numbers in her handbag which at this stage was glued to her even in bed it seemed. You may find that she will only go a short way anyway, before feeling the need to return, if not, then the information which you have provided will enable her to get help to return. As time went on, my Mum stopped going out alone from her flat, waiting for me take her instead on a regular basis. This worked quite well, although it was very time consuming and with four children will push you to the limit. Perhaps the SW could help here by organising someone to accompany her out? I know Crossroads will do this too. You must never forget you are doing your very best here, she is under the watchful eye of a SW and her GP, they must take a share in the responsibility. If she is unable to settle, then they need to be told and quickly. The next few weeks will tell you what needs to be done. Thinking of you, love She. XX
     
  4. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    thanks for the advice She, Bruce x

    Just read your comments, thanks so much. Your right She, she is at a difficult stage not quite needing residential care, and desperatly wanting to manage and prove to everyone she can manage. I knew this may not work out, but at least wanted to try it. I have pinned her keys on a lightweight short chain in her pocket with a key fob labled with her flat number and name. she always wares the same cardigan, unless i take it off to wash/dress her and it is a lifelong habbit she has of having a key pinned there so she remebers. As for wandering she has NEVER done it before, so hopefully the upheaval and confusion has scarred her into becoming worse, hopefully temperally. but i know this may not work.

    I have arranged 3 visit from a care agency. morning, noon, and evening. and for the next couple of weeks i plan to stay there, leaving for breaks around the time of the carer visits.

    Bruce, there was no party to spoil. And yes, i think sundowning was to blame now i come to think of it. She was fine within the space of the hour after. plus she had tried so hard to be strong and i think it all just came out at once. She may need residential care, i know. But i wanted to give her a chance. she is only 73. in the mean time we have a very undertanding warden, an apsolute angel sho should be paid in platanum. good support from social services, and family. might i add that this never would have been the case if i hadnt had blown up like a bomb and demanded it! (another story) these are the people who left me coping alone for 3 years.

    luckly i have a night off, my cousin is staying the night till tomorrow evening with mum. take care x
     
  5. Jude

    Jude Registered User

    #5 Jude, Feb 22, 2005
    Last edited: Feb 22, 2005
    Dear Julianne,

    Oh dear! I know exactly what you are going through right now, as I put my parents into close care accommodation in 2000. It was a terribly anxious time because I was dealing with the sale of our family home and also trying to help my parents adjust to new surroundings - and sleeping on the floor in two places. They were diagnosed as being in early stage AD, but not in need of full Nursing Home care or EMI. They had enough memory to know that they had been moved from our family home but were unable to understand why I had done this. I'd also had to prevent my father from driving a couple of months' prior to this - the whole scene was a total nighmare for me at the time...!

    It took about 6 months for them to settle in altogether. They were incredibly disoriented and my father was so cross with me for selling our house without his permission and he could hardly bring himself to speak to me during his rational periods. I felt like the world's biggest heel...!

    They stayed in close care accommodation for almost 3 years. During this time, the Wardens were wonderful, but it became increasingly obvious that they were exceeding their duties of care. My parents were no longer able to fix meals for themselves, operate the microwave and my mother was having trouble with washing and dressing. It all came to a head when I received a frantic phone call to Bali from my father [warden-assisted] . My mother had deteriorated rather more rapidly than my father and he was acting as her principal carer, although far from rational himself. He wanted her put into a nursing home so that he could get respite. I agreed very, very reluctantly but it seemed like he was at his wit's end.

    Four days' later I received another call - this time from the Warden to say that my father was frantic because he didn't know why his wife had been taken away - and that my mother had suffered a mild heart attack due to the separation. I'd made a seriously BAD decision....

    I returned to England immediately, and was told that my parents were no longer suitable for Warden assisted care and that they would have to move.

    There were no Nursing Homes that would take both of my parents together, nor were any twin rooms available. I did the only possible thing and rented a bungalow and decided that I would have to put my life on hold for a while until I got things sorted out for them. We went through another 6 months of assimilation. Much worse this time, because my father was really aggressive to begin with.

    Eighteen months on. Things are much better thanks to two wonderful carers. My parents are doing really well and seem to be fairly stable at present. I think this is due to a family environment and plenty of nourishing home-cooked meals and daily walks. I'm there as much as I can be.

    Julianne - do take the time that your mother is in Warden Assisted Accomm to scout around and find a Nursing Home to suit. It's a whole lot easier to do this for one parent. Take her with you regularly, if you find one that fits the bill. If she is familiar in any way before another necessary move, then it will be so much easier for you later on - especially if she knows the staff and the layout of the place. Moving elderly people is so very hard to do, because they become so frightened and confused in unfamilar territory.

    I do hope that close care works for as long as possible.

    Jude
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Juliane

    You are doing a magnificent job of caring in all senses of the word.

    Yes, of course do as you are doing, trying all avenues before the doors close on any of them. Jude and Sheila have far more experience than I do of the place you are at now, and of course, we all want to maximise the good times for our relative, and of course for ourselves in being able to be with them, and care for them.

    Best wishes

    P.S. if only everyone knew how unlike me it is to be coldly practical, even at times - that all came with Jan's dementia. Jan and I were the ultimate romantics - never looked at or thought of anything bad; our world consisted of two people. Dream world! But we made it last for over 28 years until things started to intrude.
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi again, Julianne, Jude is right there, do take time to find the home you may need in readiness for any future move. I did this too, then I got Mum to stay there for respite so they got to know her and she them. If it had come to her moving there it would have made life easier all round. Day by day Julianne, take care, love She. XX
     
  8. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    Todays been good so far, mums a lot more settled for now, and i am back on duty tonight fealing much better from the break. social services have offered an extra carer for 2 hours a couple of times a week to give me a break, along with 3 30 mins care sessions for someone to prepair her food and help her with personal care. Age concern are looking into a volunter to befriend mum and give me a break from time to time. they are getting a grant to pay for carpet, have got her a sofa, reclining chair and microwave.

    Just shows what you can get out of them when you kick up a stink.

    Thanks for you encouragement, will look into residential. Its true that it will be helpful. especially for respite in the mean time.

    Best wishes,

    Julianne x
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Julianne, so pleased things are looking more positive today, love She. XX :)
     
  10. Jude

    Jude Registered User

    Dear Julianne,

    Me too...!

    Moving times are simply horrendous. Do try not to blame yourself about this. It's all too easy to beat yourself up - I know because I did it in spades.

    In retrospect, I think it was all about selling our family home. It took a month to do it - to split up 40 years of happy memories. In the first week, I gave some precious items to friends for safe keeping; then disposed of the less emotional items. During the last fortnight, I hired a skip and just dumped everything that wasn't going to be needed any longer and in the final week, I got some house clearers in to cope with the garages and sheds, because I was such a mess emotionally at the time.

    By the end of this, I felt like I had completely dismantled my parents piece by piece and torn our family to shreds. My last night at home was spent on a mattress on the floor, a takeaway dinner and a bottle of Scotch. I was utterly gutted..!

    The whole sickening thing about this is NONE of it was necessary IF the NHS and the Govt had provided free care fees to my parents who have paid for years for care as elderly people.


    Jude xxx
     
  11. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    How awful Jude x

    I know just what you mean. Since dad died 5 years ago (march 6th so its a funny time for me) mums 3 bedroomed house has accumulated so much that you cannot move in most rooms, some not even get into without climbing. It was rented, so i guess thats why all this is free for her. But obviously it all depends on the social services that are dealing with it. I am lucky to have been appointed one of the best i have ever known who has even forked out of her own pocket to help.

    We started clearing her old house (the house i grew up in) over the weekend. My friend babysat my kids and looked after mum at my house until we were ready to move her into the sheltered accomodation Sunday evening.

    We had a skip, van, and 6 people. and it was traumatic to say the least. and also highlighted how badly she was coping there. I knew it was bad but i didnt expect to find dead rats at the back of one of the kitchen cuboards! Mice had eaten underneath the furnature in the rooms she didnt use. none of the furnature except for the bed was of any use anymore and most has been dumped.

    Mum was good last night, we had a giggle cause when i arrived she had gone though the kitchen cuboards and set up jars round her chair. she didnt knowwhat each was or what you did with them so just opened them up and started eating. when i went in she announced "hi love, come and stick your fingers in this, its gorgeous!" there she was pawing lumps of peanut butter out of the jar and dipping it into hot chocolate powder. i Had such a giggle with her when i told her what you did with it. she found it hilarious!
     
  12. Jude

    Jude Registered User

    Dear Julianne,

    I hope you didn't check the use-by dates on the jars.... that would have been a bit of a worry! The stuff in our kitchen was over the top by almost 3 years when I got home to sort things out.

    My parent's house wasn't dirty when I moved them out, because I'd been there for almost 11 months looking after them. It was just shabby and worn out and looking pretty sad. It actually reminded me of an 18th Century theatre set, where all the players had left months before and the dust had settled on a total finale.

    I clearly remember standing in the lounge, looking at every single item of furniture and each ornament in it's special place and realising that nothing was ever going to be the same again - and the worst of it, was that I was going to be the one who had to erase the set.

    That memory will be forever etched into my heart as one of the worst days of my life. It was the point of no return. I guess we all, as carers, children and spouses, have a similar picture indelibly printed in our souls.

    Jude xxx
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Julianne and Jude, gosh that is all so similar. We had to send most of Mum's furniture to the tip as the woodworm was so bad. Like you two, the cupboards once you started were a revelation. I also found several dresses cut through the middle, my Mum had been a keen needlewoman, it looked as if she had decided she wanted a skirt then couldn't remember how to do it, so sad. As Jude says Julianne, don't beat yourself up, you are doing a good job there. Hopefully hearing we had similar times will help give you strength, you do get through it. Love She. XX :)
     
  14. bjthink

    bjthink Guest

    Julianne and Jude - how awful! The day will arrive for me, too, and I find it unbearable even thinking about it. I have no idea what I'll finally find in my mother's 'immaculate' house, in which evey drawer is neatly crammed with 'useful things' like bits of shoe-lace and 40-year-old lipsticks. I know we'll find money under the carpets, where she's hidden it, and all our photos which she took down because she doesn't like us.
    It's going to be a sad time, but maybe not in the immediate future, anyway......
     
  15. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    Your both right, It does help to know i am not alone. What you said jude is exactly how i feal.

    I couldnt care for her there, with my kids in tow (they are all under 6) it was just impossible to take them with me or stay there for any length of time. at least in the new place i can take them with me and be there for her more.

    As for the jars, they were all brand new. we were unable to take anything from her old place. it was just too bad. beyond anything you can imagion. well i'm sure being familier with AD you can imagion a little, then times by 10! lets just say 90 percent of her kitchen cupboard was 10 years out of date.

    She didnt use the kitchen see, she lived in one room surrounding herself with the fruit, biscuits, crisps, and bottles of water i brought her, and had meals on wheels. she didnt even know where the kitchen was. This is why i'm so glad to have her out of there which helps lessen the pain i'm fealing now. She was in great danger there.

    I try not to beat myself up, but i wish i could take care of her myself, and feal like i should be doing it. I know i shouldnt punish myself, and when i try and do everything and be there for her all the time i realise it just isnt possible. My son said today that he wished i was able to be with him more, and that hes missing me. I have lost half a stone in weight because i dont get time to eat, and my previously happy daughter crys all the time begging for cuddles.
     
  16. Jude

    Jude Registered User

    Dear Julianne,

    It is impossible to be all things to all people and your children are sending you some very strong signals that you are not 'Superwoman' - as hard as you are trying to fill that role. Something is going to give soon and that is going to be you!

    You absolutely need to give yourself some head space here, because you'll collapse in a big heap otherwise. At that point, you will probably beat yourself up even more and start running around in ever diminishing circles until you have a serious breakdown. That's not going to be very helpful to anyone.....

    Mum's in a safe and caring environment. That's a huge achievement for you already. None of us can care 24/7 for endless periods of time without reaching burn out. Most of us have tried it, failed and felt awfully guilty - BUT in order to care effectively, we need to realise that we need TIME for OURSELVES as well.

    Is there any chance that you could take some time out to go to the hairdresser, have a massage or go to see a movie alone? Do something really 'self - ish' for a couple of hours. Make sure it involves mental diverson so that you aren't actually thinking.

    If you're a bit stumped for ideas, then write yourself a list of 10 of your very favourite activities. Next to each of them, write down the approximate date of when you did them last - a week ago, a month, a year.... whatever. It's a pretty helpful way to see if you are being good to yourself or not. You can then make a date with yourself to try and do at least one of these items every week or more often if possible. They don't have to be costly things... a couple of items on my list are having a long, hot bubble bath or lying in the sun reading a book [bit difficult for you right now, that one!]

    Hope this might help out a bit.

    Jude
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Julianne, as usual, our Jude is spot on with her advice! You must take time out, for yourself and your kids. Your Mum I am sure, if she were well would be the first to tell you this. Tell SS of the children's pleas for your time and ask for them to give you time to facilitate this. It can be done. As Jude says, you are entitled to time for you, I found a massage a real treat, relaxing and lovely to be pampered all in on. Then the kids, they really need you Julianne, be good to yourself so you can then give them some special time too. They are so young, they love you and your Mum, but you can't expect them to understand as we do. They need you even more than your Mum a lot of the time. If SS are aware of how things are, it is their duty to help or they would not be doing their job. Shout girl, those that do get as you already know. Thinking of you and love to you all, She. XX
     
  18. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    She, Jude, my little gardian angles!

    Your right, and i thank you for it.

    You know it was a year and a half since i had my hair cut? 7 months since i had an evening off to see friends, and a year since i went to the cinima.

    I guess once you see it worte down you realise.........

    I'm gonna get my other half to be on call tomorrow night while i go and have a meal with a friend.

    And a hair cut next week,

    A massage a couple of weeks after........

    How did i not notice i was doing nothing but caring and stressing?

    THANKS X
     
  19. Jude

    Jude Registered User

    Dear Julianne,

    As carers, we seem to manage to care for just about everyone else and then run out of energy and time for ourselves. As you can see now, you've been beating yourself up with big sticks of rhubarb... Time for a change of perspective, ay?

    Jude xxx
     

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