1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Like a Hyperactive toddler...

Discussion in 'I care for a person with dementia' started by Rageddy Anne, Apr 27, 2016.

  1. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    THANKYOU for supportive comments....it's good to have hands to hold.

    A friend didn't help today by emphasising the negative aspects of leaving Rob in a Care Home, especially at the weekend, when there aren't enough Carers, and they know little or nothing about their charges.

    Of course no Care Home is going to be able to tailor the care in every way that family would wish; that would surely be almost impossible. But struggling at home, mostly alone, isn't necessarily the answer either, is it?

    I'm off now to make sure he's been encouraged to go to the loo.....he forgets what to do and doesn't remember how to ask where it is. There's no need for him to be incontinent, and upset..... Time for me to put on my best diplomatic face......
     
  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    Ask your friend if they are prepared to look after him for that time? That'll stop them making silly comments!
     
  3. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    True Spamar! She visited for about an hour, and kindly took him out for a walk, so I'm grateful, but it wasn't all day and all night for months and years was it?

    He greeted me clearly by name today and asked when we'd be going home as this was a mad house. And I thought he'd forgotten who I was.
    He was hoping for some tea to drink, doesn't like the sweet cordials they serve. I asked someone if I'd be allowed to make one...It's not allowed, did he want a cordial? No, I said, he'd really like some tea.please. Half an hour passed, no tea, so I asked again. Eventually tea was delivered,ungraciously. He drank it thirstily. I stayed for two and a half hours and didn't see anybody being offered a drink, although they could have helped themselves from a trolley if they knew how.
     
  4. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,217
    Merseyside
    I know you shouldn't have to do this Anne but can you take a flask of tea to share with him when you visit?
     
  5. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Yes, that's what I thought, too, Cat. I thought Britain ran on tea, never expected it not to be available!
     
  6. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Tea still in short supply, he wanted a second mug today but the mug was whisked away. Again I had to persuade someone to top up his mug, and he gulped it down.So next time I will take the flask etc, which seems quite ridiculous.

    A pattern is emerging. He likes the visitors dropping by, but when it's me, he calls me by name and immediately starts agitating for us to leave together. I seem to be a catalyst for the " leave now" chorus, making it difficult to manage my departure. Our younger son is going to visit with me whenever he can after work, so that I can escape while he distracts. It's making visiting difficult. My arriving lifts his spirits, but leaving makes him angry.

    Yesterday he was so insistent; bossy isnt a strong enough word, and it made me remember why I thought I couldn't go on much longer at home So I'll be asking for more time, and I think they will let him stay, although he has been causing them a lot of challenges, at least when I've been there. Mind you, I' ve seen some of the others being difficult too, he's not the only one. I'm staggered at the immense patience and skill of some staff members, though some have a bit to learn. But mostly, they're poorly rewarded saints.
     
  7. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    Hello RA ..:D
     
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Anne, just to let you know that we face a similar scenario with Mil, on a lot of our visits and I can fully understand how difficult this is. We can walk in and find Mil belting along with a singing session or taking part in a quiz, all smiles and clearly enjoying herself, but when she see's us, often the tears start and 'Oh thank God you are here!', followed by requests to leave, to go home, along with paranoid tales of how she is being ill treated or talked about or how 'no one likes her' or 'they make me do all the work'. Both OH and I worry that sometimes, we actually cause her stress by visiting - its as though seeing us sparks vague recollections of her being elsewhere and either triggers or (on the also frequent occasions when she is already agitated) worsens the 'home' syndrome. And like you, we often have trouble leaving. I have spoken to the nurses and staff there about it, as I worry that when we go, we are leaving Mil more agitated for them to cope with. They have been quick to reassure us by saying that once we are out of sight, Mil forgets so quickly that we were even there anyway, that the upset doesn't often linger and that is comforting to know. One staff said that if it is our familiar faces that are triggering the desire for 'home', then we need to realise that our presence would be a 'trigger', no matter what environment she is in - so even if we had her back 'home', she would still be asking for 'home', IYKWIM. And I guess that's true - when Mil asks for home, I know these days she usually means back to her childhood home in Ireland, complete with her parents and all her brothers - but I also know that even if by some miracle we could give her that, because of the dementia, she would still ask for home on a very regular basis. So, the staff advisd us to hold onto the fact that its the dementia, not us, that is the real trigger - and have also said, if it feels too intense and we feel that we are making her worse on any visit, not to feel bad about leaving after just a short time, even if its only 5 or 10 minutes. And they are also really good about helping us to go, distracting her when necessary - though I have found that the best thing is to time my visit around meal times, and leave as she is called through to the dining room - Mil likes her grub, as you know, and a call of 'Would you like to come and have your dinner?', quite often has her trotting off without a backwards glance! Perhaps if you could time your visits, in a similar way, it might make leaving at least a little easier for you - and for Rob x

    The issue over the tea is frustrating. I have never known of a place where drinks - be it tea, coffee or pop - are not provided on request. And when I worked in a home, part of our duties were to make sure that every resident had a drink every two hours at least, and all drinks were recorded with us having a target amount of liquid that we had to try and encourage our residents to drink. It wasn't always easy to hit these 'targets', because we were so busy - but drinks and keeping our residents hydrated were considered so important, that it was one of the 'priorities' for us all, and we always managed it. I agree that its ridiculous to have to bring in a flask!

    I think you are wise to ask for more time, Anne - its such a huge decision. Mad as it sounds, I think we were almost 'lucky' in that once Mil showed physical violence, the decision was almost made for us - we simply couldn't cope with that, not with our daughter in the house. If we had had to make that choice without that factor, it would have been much, much harder - so take your time, as much as you need. I think I will always wish that we could have kept Mil at home, I'll always regret that we couldn't - but I hope that I'll also always be sure that despite wishes and regrets, that it was the right decision, and that I can live with it. You need to be comfortable with it being the right choice for you, too.xxxxx
     
  9. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    Very wise words from AnnMac - we are the trigger for the "going home" pleas and we have to remember that our loved ones short term memory is non-existant, and so when we leave we are far more distressed than them, as they immediately forget we have been

    I am concerned about not being able to get a drink when needed. My husbands home has a little kitchenette in the dining room where relatives can make tea or coffee or get a cold drink at will. It has a half height partition round it with access by a door with a bolt on the inside, so residents cant wander into it at will, but you an keep an eye on them while you are making the drink. We can also bring drinks in specifically for our relatives and keep them in the cupboard or fridge with their name on. They are also offered drinks mid morning and mid afternoon and evening and if they request more they are given them. It is especially important in this hot weather.

    I agree with the others about taking a flask in, or other drink that he likes, although you shouldn't have to
     
  10. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    THANKYOU, Annmac, for your description of a good home's drinks policy. It's what I would have expected, and when I next visit, I'll be more assertive in requests for drinks.Rob would probably have asked for tea, but has forgotten how to.

    Two good friends visited Him yesterday, and both found him unsettled. When I was there last, there was quite a lot of disturbance, other residents restless,one resident lady complaining loudly at the " hub", the reception desk, and that attracted other residents to observe, and become agitated in turn. Some of the regular staff were away on a " bonding" day, so I think those on duty were overstretched.

    My well meaning friend has other concerns, and I think she believes I should bring him home and keep going, but she's younger than I am, and has never had a husband to care for, so probably doesn't understand how drained a person can feel. However, I do wonder about one of her concerns, which was seeing a resident given a cup cake in a paper cup, which he attempted to eat, cup and all. She couldn't understand why the cake hadn't had the cup removed and the cake cut into four manageable pieces. Valid point, I'd say.
     
  11. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    #91 CeliaW, Jul 29, 2016
    Last edited: Jul 29, 2016
    Hello Anne, it's certainly a concern that they have such a strange "policy" on drinks and it certainly needs challenging. Maybe you coukd try the "puzzled but why" approach? It's one of my "tactics" when I want to get answers / something changed but avoid an angry confrontation,

    Basically, in this instance, you would ask what their policy was and when they say, look puzzled and ask "But why?" and basically you keep using variations of that..".I don't understand,..sorry I don't see why...am I missing something..." - all said with a sad face and a smile and, even if it takes a couple of attempts (I've been thinking about what you said yesterday and...) it usually makes them start to query it themselves. You can throw in other passing comments such as "but doesn't the constipation/ confusion /UTIs some will get without enough fluids, cause problems?" and it will depend on the staff whether you use a scattergun approach with your questions or target just one or two main people.

    Of course you could just ask to see their policy on nutrition and provision of food and fluids and query that. Equally, you could come down much harder and tell them you see it as abuse to deny adequate and easily available fluids and will be reporting it to the relevant authorities. Because, IMHO, it is - but I can understand how difficult it is to address without feeling that you might be jeopardising your husbands placement there.

    It seems such a strange thing to do even if only looked at from the point of view of the staff as poor hydration can lead to problems that increase their workload!

    Do hope you can sort something out to resolve this xx
     
  12. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Wisecadvice Celia, and THANKYOU.

    Today I went extra early, and found him sitting sleepily by the entrance door, and someone had given him a cup of tea! He might have been there for ages, as he kept sleeping on and off all morning.

    Strangely, today I couldn't fault the provision of tea/ coffee/ hot chocolate etc! They had a monthly coffee morning, so drinks were being made all the time! He drank a lot.

    So perhaps a wait and see approach is best. I'll continue dropping in at random times, and so will his other visitors. Unfortunately most are away now, so it'll be me, and I'm still so tired.
     
  13. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Good you found things a little better, maybe your comments have already started to effect a change?

    I am sorry you are still so tired although its not surprising considering the level of 24hr stress you were under for so long. However, maybe it would be an idea to visit the doc for some blood checks? Even with the intention to do so, I am sure it will have been very difficult to look after your own nutritional health and maybe you have some low blood levels? Particularly iron and so have a degree of anaemia?

    Do hope you have a restful weekend and find hubby is now getting more regular drinks. Take care x
     
  14. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Popped in to see him this morning. He didn't see me but I saw him, and he seemed perfectly happy, asking one of the carers where she was going for her holidays. He seemed so peaceful that I decided to tiptoe out, instead of perhaps causing him worry.....When he's seen me the last three times, he's started agitating for us to "get out of this madhouse" as soon as possible.

    Felt rather strange, but the main thing is his mood wasn't troubled.
     
  15. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    I'm pleased you saw him so peaceful RA , rests your mind a bit...hoping the tea keeps flowing too x
     
  16. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    A good friend has visited him, found him not very happy by the door asking for me, but they went for a little outing and returned in a more cheerful mood. The friend is imaginative, took him to a familiar golf club, had a cup of tea and hit some golf balls. Thank heavens for that sort of friend.
     
  17. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    #97 Rageddy Anne, Aug 5, 2016
    Last edited: Aug 5, 2016
    Sadly the good friend who takes him to the golf club and other places has had a setback of his own, so Rob hasn't had the visits I thought he had.
    I went yesterday with another friend, we stayed a while and kept him company while he had his tea. Again, tea to drink was in short supply, but my friend had taken in a bottle of orange juice, which Rob drank enthusiastically.

    I cant go today, but will tomorrow, thought he was having a visitor. Feel so mean not being there....
     
  18. disi

    disi Registered User

    Sorry the good friend was unable to visit Rob. I am amazed that tea is in short supply, can you not ask for more?

    Please don't beat yourself up about not going today, he will be OK. I know it's easier said than done, but you must think of yourself as well. Hugs, Diana xxxx
     
  19. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,520
    Ireland
    When William went into full time care, for the first few weeks, I got the "go home " pleas - it broke my heart, because as soon as he was in full time care, all his aggression disappeared and he thrived! So I knew it was the right environment for him. After a few weeks, "go home " segued into wanting me to stay! I stopped bringing a jacket or bag, except his laundry bag, in with me, so it looked like I was just coming from elsewhere in the building and not "visiting ". I even, a couple of times, passed through the lounge and waved cheerily at him, before coming back a couple of minutes later to sit with him. He became convinced that I actually was always there, somewhere around the building, busy with housework! When I was leaving, I would tell him I was going off to do the laundry, and would be back later.
     
  20. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    THANKYOU Lady A. I'll try to manage without a bag too, not sure how as it's quite far from home, so I need my "stuff". Have tried the flitting in and out a bit, and it does help, but he knows when I'm slipping off, and always wants to know how long I'll be. Feels a bit mean saying I'll be back soon, but it calms him, and I hope it doesn't feel too long when I'm not there. He tells everyone he hasn't seen them for ages and is always very glad to see them.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.