1. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    Hi
    Just got off phone to Mum and she has entered a new phase with Dad, He now goes to bed when it gets dark - about 7pm at the moment, nothing on earth will keep him up, then he appears fully dressed at around 11pm and refuses to go back to bed. He wanders around the house all night long with his coat on trying to unlock doors so he can go out. Mum is getting no sleep at all and Dad seems to coping on 4hours at the most each night. During the day he wants to constantly walk even when he is obviously tired - has anyone been through this (I know thats probably a stupid question) and what can i do or Mum do to try and calm him back to sleep. Mum is 77 and getting to her wits end with it all Dad is nearly 80 and is his 6th Year with AD. We are all helping them to move into a bungalow on Monday from a large house so mum won't be as tired and now I think she will accept some respite care (the guilt thing has stopped her before) they have been together over 55 years and its breaking my heart. The respite care will help her during some of the week but is there any help during the night???? Any suggestions would be gratefully received!
     
  2. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Mary Poppins

    Have posted a reply this afternoon on 'sleeping advice needed' thread which covers this. Unfortunately there is no 'solution' that I know of , though the drug dad is on at the moment (seroquel) has helped. I guess sometimes as the dementia progresses the sleep problems reduce but in my dad's case it's only medication that has helped. He started trying to go out during the night , not sleeping and refusing to change into nightware, 2 years ago. It is really, really hard for the carer and I have every sympathy for you and your mum. I can only suggest insisiting on referrals to specialists in dementia to try to improve the medication. My own experience was that nothing else worked. Suggestions about stopping him sleepng during the day, night lights, changing routines etc didn't even touch the problem.

    Thinking of you
    Blue sea
     
  3. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    #3 Mary Poppins, Oct 15, 2005
    Last edited: Oct 15, 2005
    thanks

    Thanks very much - I didn't realise that there was already a thread going on this issue! I have read this and found it very useful - Dad isn't on anything to make him drowsy at the moment apart from anti Histamines which the chemist recommended without going to the GP. Dad had a Cataract done about 2 years ago under a general and the aftermath was horrific - none of us got any rest for about a week Dad just was so confused it was awful and mum has since refused to give him anything to make him drowsy as she fears this outcome. I think now though he has detoriated quite rapidly in the last 6 months that I honestly think she would try anything! I am dreading Monday Evening when we get them installed in the new bunglaow - I am fully prepared to be sleeping the night in a chair just to make sure Dad is okay and mum gets some sleep - she has had an exhausting week. Thank you for replying to my question - when they register with a GP I think I will go with them and talk to him/her about this issue otherwise I can see Dad outliving Mum if she carries on like this.
     
  4. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Mary Poppins,

    I hope the move goes well. One thing I wanted to mention is that if your Dad starts saying he wants to go home, it won't necessarily mean he doesn't want to live in his new bungalow. My Mum and Dad had been living in theirs for 16 years and Dad still insisted he was going to go 'home' - he meant to where he lived as a child.

    "otherwise I can see Dad outliving Mum if she carries on like this."

    I know what you mean, this was a major concern for my sister and I about our Mum. I can only echo Blue sea's experience about nothing really helping until the medication is properly adjusted and I hope you can get to see the new GP soon.

    Best wishes,
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Mary Poppins.
    Hazel made a good point about going home,she said:

    My Mum and Dad had been living in theirs for 16 years and Dad still insisted he was going to go 'home' - he meant to where he lived as a child.
    This is quite common.
    We have lived in this house for 39 years and Peg still wants to go home,I have never discovered where home is !!
    Norman
     
  6. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    53
    Going Home

    Hi Mary Poppins,

    My mum is the same. She thinks she's on holiday somewhere, even though they've lived there for 13 years.
     
  7. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    Thanks Again

    Hi Everyone

    Just logged on to catch up before I start the drive up the M1 to Mum & Dads. Everyone is really kind - thanks, Dad does still talk about getting ready to 'go down there' at night even in the house he is in now. His confusion & disorientation is getting worse so I hope the next 2 days go well for him. We (the family) intend to take him out for the day tomorrow (well me actually as I have been designated chief carer for the day) then take him back to the bungalow in the evening when his chair and coffee table and rug are all there - I don't know if this will work but familiarity of possessions seems to help and I'm hoping that picking the whole lot up and putting them in the same order but in a different house will go largely unoticed by him. I will let you all know how we go on - I can live in hope can't I!!! The Lady next door is probably dreading the move as when we were getting the bungalow decorated for them I took them down to see how far we had got & while mum & I were putting carpet samples around the room and deciding which was the best Dad let himself into her bungalow and used her toilet! She walked out of her living room to find a strange man coming out of her bathroom doing his trousers up! I thought mum was going to die of shame - & for a while she said she couldn't possibly move there - I suppose it puts a new slant on introducing yourself to the new neighbours!! I will be back Tuesday or Wednesday so keep your fingers crossed for a good couple of days.
     
  8. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    Good Luck with the move!

    I would love to know it goes, as we are going to be doing just the same in about 3 weeks time. I have wanted this for so long, but as the time draws near, am getting butterflies thinking about it.

    My parents are moving to a bungalow on a retirement complex just a few hundred yards from me. Mum can't wait to move, as coping with Dad alone is wearing her out. Dad hovers somewhere in between looking forward to it, and not knowing what on earth I'm talking about.

    All the best, Mary P.

    Joanne
     
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Torture and the gotta gotta go's

    Mary I must have missed your post when you originally put it up but your Dad's behaviour sounds very similar to a stage my Dad went through. He was forever getting up in the middle of the night and not only trying to get outside but also he would go and yell at Mum to wake her. Sleep deprivation is a form of torture you know and you must monitor your Mum because lack of sleep can lead to her behaving irrationally as well. Like you, we were concerned that Dad would outlive Mum during this stage. Our solution in the end was respite and also a sleeping drug for Dad before bedtime. It was difficult to find such a drug for him because it had to be one that wouldn't mess with all the other medications that he was on, but eventually the doctor's found one that worked satisfactorily.
    The need to 'go home' stuck a chord with me as that was a big problem causer in our house. Dad continually wanted to 'go home' and it appeared that in his case it wasn't anywhere he had lived for the past 50years because we took him to every house he had lived in. Perhaps it was his original home in Ireland (we live in Australia) but we think now that he just had an uncontrollable urge to be going somewhere. Even now he's 'gotta, gotta, go' a phrase that although not heard as frequently still occasionally comes out. These days he walks obsessively up and down the hall at the home, reaches one door, touches it and then turns around and walks back to the opposite door, he can do this for hours and he's quite happy doing it. It appears to soothe him and any anxiety he has?

    Hope this helps,
     
  10. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #10 Lynne, Oct 17, 2005
    Last edited: Oct 17, 2005
    Hi Mary P.,

    Just last week at the health centre, the pharmacist asked my mum her address (when trying to track down a prescription) and she replied to him, quick as you like, with our old address where I grew up, from which she moved 21 years ago!

    I don't have the experiences that others have to compare with your situation, but a couple of off-the-wall thoughts occurred to me (Excuse me everybody if they are impractical, I mean well)

    In the new bungalow, everything will be new & strange, so it might be a good time to introduce other changes you may have been wishing to make even when they were at the old house. Obviously, as you said, you will be making sure that familiar & reassuring things are in place (chair, cushion, rug, coffee table, photos etc.) so that there are things he recognises, but make sure 'his' chair is in the most convenient place for you/Mum from the start, if possible. As you have new neighbours, and he has made himself known to at least one of them already :eek: perhaps this might be a good time for him & your Mum to accept visiting help (CNP, social worker, AS befrienders?) or respite or day-care outside the home on a regular basis. Oh yes, the Lady Next Door may prove to be your Mum's salvation and best buddy; after all, you never know who has already been down this road with their own family members, she may be reading your post as I type this! Once they understand the situation, people can be very kind, even without personal experience of it.

    Another thought (I hope not too late) Perhaps it would be a good idea to put a sign - perhaps a pictogram if Dad doesn't read so well any more - on the outside of the loo door, so you don't discover him peeing into a flower vase in a cupboard! :D It's been done before, believe me!

    I do wish you good luck with the move, and your parents' adjustment to their new home. Moving house is always stressful, but I'm sure your Mum will come to appreciate the advantages of a smaller home, and perhaps feel able to share some of the responsibility with whatever "cavalry" you & the new GP may be able muster.

    Hang in there, best wishes
     
  11. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    They're In!!!!

    Well we've done it - I did wonder at some points during the weekend whether or not we would actually get them into the bungalow in one piece but we managed it. As I said in previous posts I was chief carer for the weekend and on the moving day yesterday and with a lot of pre planning I took him through the whole event I think relatively unscathed. The preparation mainly included making sure I had enough sweets and choc bars to satisfy his cravings, enough petrol in the car so I didn't have to stop at petrol stations to fill up as he won't stay in the car when it is stationery, a sort of idea where I was going to take him and I was ready. I kept up a constant conversation to try & keep him engaged though I may as well have been talking in japanese for all the notice he took. We visited garden centres galore as gardening was his passion when he was younger, he tried to steal a kit kat but I have got into the habit of searching his pockets at each till we go through just in case. We went on some drives, I took both mum & dad to lunch on the moving day so my sister could get the bingalow into some sort of order - that was the least relaxing lunch I have had in a cafe - he told everyone it was 'bloody awful' then ate the lot and wanted to clear the table after and wash up - old habits die hard - we had to get one of the staff to take the plates so that he would leave. He insulted the lady behind the deli counter in tesco's ( I must say she was the least understanding of all the lovely sales staff we have come into contact with over the last few days) She rolled her eyes when me & him were having a batttle of wills about the fact that he needed some cooked meats I was just getting ready for her to tut then she caught my 'dead eye' and looked away. Everyone knows us in that shop - it is mums local supermarket & I take them every week so they are all used to him anyway. He sang 'I'm dreaming of a white christmas' and recited poetry to the queue in the fish & chip shop but things like that really don't bother me any more I just carry on as if he is not pretending he is on stage somewhere. It does seem strange calling my dad by his christian name though - He doesn't react to anything else. The only really hairy moment of the moving day was - well there were 2 actually -the first was when the removal people moved his beloved piano (which he hasn't played for years but still thinks he does)- we all held our breath waiting for him to start shouting but he didn't. The other was when he refused to stay in the bungalow and said he was 'going down there to bed' and he threatened to smash the glass in the door and pushed mum out of the way - I let him go outside then did a deal with him - I said if he would come back in I would take him in the car for a run - he did, so I did - it calmed him down but it does worry me that the bungalow is a lot smaller than the house they moved from so he can walk round it in seconds whereas he used to spend all his time going into rooms and opening & shutting doors in the old house and he won't be able to do this in the bungalow. All in all it went as well as I expected it to - I am going back up in 2 days so there may be more developments by then. The next thing is sorting out a GP - then assessments again as he has moved health authority areas. I will let you all know how the first week goes- thanks for your good wishes
     
  12. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    Well Done !

    I am so glad the move went well. It has given me hope that ours might not be the nightmare that I'm worrying about. :)

    I, also, have concerns about moving them from a quite large house to a smaller bungalow: Also, although the new one has a garden, it is not fenced in: It's an OAP complex and the gardens are all 'open plan' to make in easy for the chaps who come and mow the lawns. I have told all the new neighbours that Dad has AD and they all seem great - full of stories about how they all look out for each other, keep an eye on the more frail amongst them, and seem very understanding about his potential for wandering. We shall see.

    I spoke to my Dads consultant about the move - she told me to get them registered with the new GP as soon as possible, then they could forward all the relevant notes, and there would be no break in care: I had assumed this meant Dad wouldn't need another assessment, but I may be wrong.

    Best Regards,
    Joanne
     
  13. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    New Assessment

    Hi JKS

    Yes it went well on the whole, but be prepared for Mind numbing exhaustion! :) My mum was in what the family fondly refer to as 'Christmas Eve Mode' which in laymans terms is when we were all little, her voice used to get progressively shriller and shriller as Christmas Day approached!! :)

    The reason we have to have another assessment is that mum has moved health authorities - I tried to fast track the doctor thing as she owned the bungalow for a good few months before living in it as we renovated it for them, and she was registered for Council tax in the new area, but according to the various doctor's receptionists I spoke in Yorkshire to they had to be physically sleeping at the house before they could register at a new GP's. This means a transitional period where they are registered at a GP's where they no longer live. While living in the house they have just moved from mum steadfastly refused any care centres, respite care or anyone coming to the house so we have been dealing with it as a family in isloation from the social services for 6 years. This means that the move has meant a perfect opportunity for us as a family to talk to mum about how much worse dad is and how she needs that break from him now & again. I think the final straw was on the one time Dad went for a walk, the same walk he has been doing for 6 years, and didn't come home - he forgot to turn left at the traffic lights and just carried on walking in a straight line for 5 miles or more until some kind stranger rang the police and he was picked up just before he got to the slip road which down onto a motorway. After that he never went out on his own and this caused mum a lot of stress as all he wants to do is walk. This being the case she is ready to accept help - but it had to be her decision, they have loved each other for over 55 years and the guilt must be overpowering for her.
    So back to the original thing - the assessment at the local unit attached to the hospital will be the first assessment for day centre type of care for Dad as there is nothing in his notes apart from letters from the consultant after initial diagnosis. It has been a hard 6 years and we are only just beginning I fear.
    I have just got off the phone after giving BT a roasting - they thought it was acceptable to leave elderly vunerable people in a new home with no telephone for 8 days - I think not!!!! I had to give mum a lesson in how to use a mobile phone on the move day when she was tired out, we bought her a mobile but she hasn't used it before - she was scared of it. I had her ringing everyone and practicing how to connect and hang up much to everyone's amusement!!

    I will keep you posted on how Dad is coping
     
  14. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    #14 blue sea, Oct 18, 2005
    Last edited: Oct 18, 2005
    Hi Mary Poppins

    You sound as though you have coped brilliantly with the move for your mum and dad. Your dad sounds so similar to how mine was in the early stages - the sleep issues, wanting to walk all the time etc. You may have already done this but if not I would recommend getting your dad to carry a card in his pocket with his name, address and phone number so that if he gets lost and can't communicate properly he can show someone the card.

    Another point -when my dad moved GPs to come and live with us, I discovered the notes can be transferred really quickly if the new GP's receptionist contacts the previous surgery direct with an urgent request. You have to convince the receptionist it is urgent of course! If you wait for the normal routes it can take weeks. It does sound as if the move is an ideal opportunity to get your mum to accept she will need help with / respite from caring for your dad. Unfortunately this is an illness that only gets worse and hopefully she will realize that it's in your dad's interests as well for hers to have some breaks and to look after her health. Don't forget to look after yourself too!

    Have your mum and dad signed power of attorney forms? If not read details in fact sheets on this site. It really is important to do this before things get worse.

    Sorry if this all sounds negative - it's not meant to be. I just know from experience that sometimes deterioration can happen very quickly and it's best to be prepared. In many cases though the person 'plateaus' for a considerable time - there's just no knowing in advance how the illness will progress. In any event proper assessment will help get the best medication to suit your dad's particular situation.

    Blue sea
     
  15. Mary Poppins

    Mary Poppins Registered User

    Sep 20, 2005
    19
    Yorkshire
    Dad Coping

    Hi everyone
    Dad isn't coping well at all - he was very distressed yesterday in his first full day at the bungalow, wanting to go out of it all the time. Mum sounded very very tired last night. We are all worried about this and the doctor issue is worrying me too. She wants to go to a specific doctor which is near the bus station where she gets off but it is full, the practice manager told us we had to write to the primary care trust and give valid reasons why we want that particular GP. This could take weeks Maybe - then there is no guarantee that they will get the GP they want. Then they have to register go for the initial appointment and then the referral will hopefully happen. I tried to talk her into going to one whose list is not full but she dug her heels in - and said she wanted to wait. Her old GP i thought could have been more supportive of her situation, when I rang up trying to fast track the transition the secretary had no computerised record of Dad's condition so she didn't know what I was talking about - apparantly it is all still paper based and as far as she was concerned dad was as fit as a fiddle. I am quite honestly losing confidence that anyone out there can actually do what they say they are going to do without mistakes or being checked up on . I am turning into Victor Meldrew!!!!
    Hi Blue Sea
    Dad is too far down the AD route to sign power of Attorney froms so I have looked into the guardianship issue and mum is going to do it but she wanted to get moved first because there was too much going on. I am going to sort out power of attorney on her affairs then we don't end up in this situation again, god forbid, if she ever became a sufferer too. I just want you all to know how FANTASIC my mum is - she never complains, and accepts her lot with stoic strength that her generation possess in abundance, and I love her so much.
    Dad won't carry anything in his pocket to say who he is - it is very difficult if he takes his bus pass he would just get on a bus and go wherever it took him. I was thinking about having the back of his watch engraved but would he take it off to let the police look at it? he is of the generation where men didn't wear jewellery so a SOS bracelet or necklace is out of the question. I really don't know what the answer is.
     
  16. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    Hello Again.

    Quick suggestion - we got round the address problem by giving Dad an envelope that was already addressed to him - that some junk mail or something had come in - and putting a few coins in it.
    We told him 'here's a bit of cash in case you need it - I've popped it in an old envelope for you so it doesn't make holes in your pockets'.

    He is perfectly happy with this arrangement.

    Oh, the fibs and the subterfuge!

    Best Wishes,
    Joanne
     
  17. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    To Mary Poppins ...

    Australian Nat posted this some weeks ago, and I thought it was a good idea. Whilst it doesn't get around the fact that your Dad won't carry it, maybe it would be an idea for your Mum to have something like this on her?

    Best Wishes
     
  18. deva

    deva Registered User

    Oct 6, 2005
    5
    How well I recognise your frantic, frenetic efforts to sort out all the problems in caring for your Dad.

    Please don't forget your own needs, will you? Your Mum and Dad need you, but not at the expense of your own health. People have said that last sentence to me over and over again and I am only just beginning to believe that they might be correct.

    To quote my sisters 'we turn ourselves inside out' to try to solve the daily dilemmas that Mum's dementia throws in Dad's direction. I particularly identified with the bit about your Mum not wanting to register with a doctor until they were settled. It is like 'one step at a time'; 'don't rush me'.

    It helps me to know that others experience the same feelings (how selfish does that make me??). I hope that it is some comfort to you, too (it doesn't make you selfish, of course!). All this empathy could be exhausting but I find it quite healing.

    thank you

    deva
     
  19. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Hi,
    Following the problems of loved ones getting lost......
    Would a plastic luggage tag or key fob help for men who don't wear jewllery? Prehaps with a phone number rather than the full address in case the keys were lost ?

    When my children were small I used a dog tag for them when we were travelling. My son was hyperactive and I had a fear of him running off as soon as I was distracted. You know the barrel type that fits on a dog collar and unscrews to hold a slip of paper. The details inside can be changed easily (for a day trip). They clip onto anorak zips quite easily and also help clumsy fingers do up the zip more easily.

    Best wishes
    Finnian
     
  20. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Finnian, what a good idea. Lionel wears a medicare bracelet, although he has even managed to lose that on one occassion. I shall try something on his coat zip, sounds great.
     

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