Finally getting some respite care. Advice please.

Discussion in 'I care for a person with dementia' started by little shettie, Mar 29, 2016.

  1. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    I posted here at the weekend after a traumatic time with mum. I was in such a bad place I rang the SS emergency line and they told me they couldn't help me!! I emailed the head of Adult SS to complain and this morning got a response and within an hour got phone call sorting out some respite!! Why oh why do we have to complain about everything before we get some help?!! Anyway, I wanted to ask advice about this as mum's biggest dread is going into care and the care home manager is coming tomorrow to assess mum. I don't want mum knowing she's going into care, not at least until I get her there and I'm concerned that when the assessment is done mum will know! I'd never get her out of the house. Despite the really bad days mum has when she's so confused, when she is with it, she certainly does know what's going on and can be quite formidable! Also should I visit mum or not? I do feel sometimes mum plays me up and I don't want to upset the applecart at the home but by the same score, I don't want her to feel abandoned!! Oh woe is me!! Lol! All advice would be welcomed please :D
     
  2. cat64

    cat64 Registered User

    Sep 1, 2014
    45
    Good luck with the assessment...........we have power of attorney and struggled at home for 3 years with self funded carers til hit a crunch point at christmas.

    We had to get mum to the home for assessment [ in a different town so we just said we were going out for lunch and she accepted that...she had been angry at home so they wanted to know how she'd be there!] We also mention the gp a lot as mum really liked him.even though he was no help to us at all =[

    on the day of moving it took two attempts to get here ther and we had to involve our dad which we didnt want to do as they have been divorced for 20 years but she did listen to him.....he said he had been to see the gp and the gp was so worried about her he wanted her to be looked after more and was very worried about her. mum suddenly agreed.. dad got her in the car and my sister and I sprinted round the house gathering photos/ornaments etcc......................VERY stressful but it worked.
    Our mums short term memory is very short so even though she had agreed to go she asked around 10 times in an hrs journey where she was going and what were we going to do.

    she has now been there two weeks and all seems well amazingly................so i recommend little white lies/a lot of strong coffee/tissues and having some moral support close to hand. Visit when you feel ready...I rang loads but didnt visit for a week just for an hr... and stressed big time if was just for a visit, then kissed her and walked away purposefully at the end.

    How long is your respite and could it become permanent? ..... I wish you loads of luck and do message me if you want. you obviously deserve your respite and hope you have some quality you time, be kind to yourself =]
     
  3. Clueless2

    Clueless2 Registered User

    May 14, 2015
    34
    I can remember feeling exactly the same anxious thoughts last summer, re my mum and going into a home (permanent not respite)

    As Cat64 suggests, white lies. An Oscar winning performance of big happy smiles too. I told mum we were going for coffee at a nice place where her GP (adored by mum) thought it would do her good to stay for a few days.

    Mums assessment was at home, I dreaded it and was very tense, which I am sure she picked up on. I told mum that her GP had asked this lady to come to see her as she wanted to make sure that everything would then be just right for her stay. With hindsight this was too complex an explanation. Keep it simple!

    Re visiting I didn't go for a week, but rang loads to get an update on how she was doing. Respite is just that, you are supposed to rest and not worry!

    Good luck, you have already achieved so much from a very low point, you are nearly there, just try to be relaxed around your mum, that will help her the most.
     
  4. Rosygirl

    Rosygirl Registered User

    Mar 13, 2016
    7
    Finally getting some respite

    Hi,

    When my OH was assessed at home prior to respite two people came from the care
    home one person distracted my OH whilst the other one made notes. It was very low key and I don't think my OH realised what was going in, as regards going into the care home we told him some (white lies) we are taking you out for a drive (case already smuggled into car without him seeing). It wasn't easy but we told him when he got in the home that it was for him to have a little holiday but after an episode of him stamping his feet the staff distracted him and we slipped out. We were advised not to visit as this could upset him,so just kept ringing up for updates. It is very hard but sadly its something a lot of us have to do to be able to recharge our batteries. Good luck I will be thinking of you. xx
     
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    When we finally managed to get a respite place for Mil, we were in a similar position to you, Shettie - knowing that if she had any inkling at all that she was going to a care home, even if only for a very short stay, then there would have been huge upset.

    We told Mil, only a week or so beforehand, that she was getting a free, all inclusive holiday at a nice hotel (the free part made a diference, even if it was a whopping great lie!) Depending on whether she thought day care was 'work' or a 'social club' each time we spoke to her, we told her the holiday was a 'Thank you' for all the 'help' she gave there. I didn't go on and on about it, but if the subject came up in advance, I treated it as though she was really going away on her hols, bought her new toiletries and some new clothes - and when she would insist that she didn't 'fancy it' I would 'remind' her that she had agreed to go and all the arrangements had been made, that people had gone to a lot of trouble and that if she wanted to change it after so much effort from others, she would have to 'sort it herself'. We kept it very upbeat, and always as though it was a 'done deal' and she couldn't pull out, always really positive about what a nice time she would have and how nice it was for her 'work' and helpfulness to be rewarded. . And I told the care home about what we had said to Mil, and they agreed to back us up.

    So, basically, if you can, invent a reason to convince her to go - its a holiday, its doctors orders, its while work is being done on her house - and get the care home on board, so that when the assessment happens, they can back up the reasons you have given - most will, they have experience of dementia and understand that sometimes, you have to fib. And remember, its in her best interests to go, because the more chance you have to recharge and rest, the greater the chance that you can continue giving her support - without that break, you couldn't possible keep on coping and that would be worst for her in the long run.

    As for visiting - we made (after much discussion) the decision NOT to visit. Lots of reasons - firstly, we felt it might unsettle her and not only would that upset her, and us, but it also might make things harder for the care staff. Secondly, it might cause her to question the holiday idea - I mean, how many people go on holiday, then have folks from 'home' visit them in their hotel? And thirdly, we simply needed a break, a proper break - and visits and phone calls would stop it being a complete break, as we knew it would be difficult to mange either without some upset and probably guilt.

    It was hard, waving her off (we arranged for her to go directly from DC, as the home that it is held in is a 'sister' home to where she went for respite), but it is something you can and do get used to - keeping it in your head that its for the long term benefit of BOTH of you helps you come to terms with it.

    Good luck - and enjoy your break xxxx
     
  6. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Hello Little Shettie - The eggshell walking we undertake is so common among us and I have just been through the same situation with my Mum. She was a volunteer singer with a group of ladies who collected money for Imperial Cancer. They sang mainly in care homes to entertain the residents. My Mum ALWAYS made it clear she never ever wanted to go into a home - she had a real fear of being the almost comatose lady in the chair by the window who was unable to do anything for herself. Mum went into a home just over 3 weeks ago from hospital - actually her GP said over 3 years ago when she was diagnosed with mixed dementia, that there was nothing I could do until something bad happened. What a way to spend 3 years! Then mum was forced into hospital with a painful leg, had an assessment of lacking mental capacity and I was on my knees by then so arranged for her to go to respite care direct from the hospital. It was the worse day of my life knowing Mum was being taken there but I had described it as being the next step from hospital whilst we got her bungalow ready for her to go home. I realise your situation is different in that your Mum is going from her home BUT if you can remain upbeat, strong and positive and see that what you are doing is not just for HER benefit but for everyone connected in her care, in the long run you may be surprised that the difficulties you anticipate may not occur. Because of a personality disorder my Mother has not had a friend for 50 years, now she has her friend Jean, another resident. Mum came to lunch over Easter and when taken back to the home by my son, she returned in a contented frame of mind and wanted to find Jean. I saw Mum twice in the first week she was there then I had a week's holiday and spoke to her on the phone, she begged me to take her home - that was awful, I almost got the next plane back. Then I found out the following day from someone who visited her, that she was cheerful and not the least bit upset. It almost ruined my holiday and I had not had a week away for 10 years. Give yourself a break - you probably have no idea how much you need it.
     
  7. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Thanks for the input everyone, its all very helpful. Mum lives with hubby and I and I have to say when I asked for respite I actually cried as I felt so guilty. And now I feel guilty for actually looking forward to the break from her!! I know I always feel guilty about something, that's just me! Lol! I will let you know how it goes. Keep everything crossed for me :D
     
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,400
    Female
    England
    Respite is for you Little Shelttie so for the time of the actual respite stay away if you feel comfortable. They will certainly let you know if they are having problems. Look on it as a holiday, if you went away you could not go so keep in touch by phone with the home and as long as you are not fretting too much, enjoy your break.

    If you go and you are having problems then you too will be upset and what use will the break be for you?
     
  9. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Jay, you are absolutely right. I will do my best to not visit and to make use of the time to do all the things I used to do before mum lived with us. Its hard to remember when life was 'normal' to be honest! xx
     
  10. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Well, its Thursday evening and still no respite for mum! What a nightmare this week has been! Since getting the phone call Tuesday morning offering respite that day, it just never happened. The care home never rang me as promised, so as I have had to do all through my SS hell, I had to ring them. Was told an assessment would be done that day (yesterday). Senior carer came not home manager as I was told and went through all the questions about mum with her. She spoke to mum but did not mention care home as I requested. was told the Home Manager would contact me once she'd looked at the forms. That's was yesterday. By today lunch time still nothing so I phoned and was told by the manager she had emailed MCA forms across to the Older Adults team as she couldn't accommodate mum with the form being signed. This was news to me and I tried to contact the social worker without success. I was tearing my hair out really as it was all so upside down and so much for helping me quickly!! Then I get a call saying the social worker has to come out and assess mums capacity, even thought she's been deemed to have no capacity and I have LPA over the finance and health/welfare. I was fuming, I know my mum and she so dreads care homes that I knew if it was mentioned to her, she would go ballistic and refuse to leave the house. No one knows her the way I do and I have to walk on eggshells to get her to do anything and these two were coming to upset her good and proper!! I was so tearful that when they arrived I burst into tears. In fairness the SW was a guy and he was so lovely. When I told him I had LPA and couldn't understand why they had to do this assessment as I thought having LPA meant I could decide what was good for mum. He absolutely agreed with me and consequently phoned the care home and had a row with the manager!! She however wouldn't budge and insisted on it being done so I had to bite the bullet and allow it. He asked mum questions she couldn't answer then told her I needed a rest which she agreed to and said she had no problem me going away!! When he told her she would have to go she wasn't happy and told him no I don't want to go anywhere. The conversation went round and round in circles and eventually he brought it all to an end. They left to get the report typed up and sent across to the home and no sooner had they left I heard mum crying. When I went into her she went mad at me, told me in no uncertain terms was she going anywhere and I was wicked to send her away. I tried to explain it was only for a short while but she wasn't interested. I knew it would happen. Mum can't remember what day it is and yet this stuck in her mind. Her biggest dread coming true. I need someone to come with me when I do try and take her and that can't be before Monday now. God knows what sort of weekend I will have again. Its' just despicable. I feel so low right now I just don't know who to turn to.
     
  11. PollyP.

    PollyP. Registered User

    Oct 8, 2009
    327
    Herefordshire UK
    Oh Little Shettie

    How awful, you must be so distressed by all of this. I really feel for you. Perhaps your Mum will forget about all of this by tomorrow and you hopefully will manage a reasonable weekend.

    As you said, why do we have to fight for everything. It's heartbreaking enough having someone with dementia without adding more problems for you.

    ((hugs))
    Pauline
     
  12. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    It is a living nightmare. Have you good friends to help you ? I hope so.

    I hope you get respite soon. You need it.

    Aisling xxxxxx
     
  13. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    I'm hoping a friend will be able to come with me for moral support when I take mum in seeing as my family are non existant!! My poor hubby's had enough too, he works long hard hours and I try to allieviate his stress as much as possible. He's the main bread winner now I've had to give up my business and can't afford him to become ill through it all. Its just so hard to get the help we need and deserve. What a world. Thank you so much for your support, it means a lot xxx
     
  14. AprilJoy

    AprilJoy Registered User

    Feb 10, 2015
    5
    S Yorkshire
    hope it works out for you

    It's just so cruel for everyone this disease isn't it - horrible for your mum but also for you and all the rest of us. I do hope you get the break you so desperately need. I would love to know how you get on because I'm in the same boat. I mentioned respite to my Mum in Law for the first time today - we've booked a holiday and she's already booked into a home, and she didn't like the idea one bit, isn't buying the 'we go on holiday, you go on holiday' idea at all. I don't know what will happen if she gets really upset about it, we don't have PoA. Hubby is busy planning the holiday, looking at maps and what to take and where to go, and I'm just thinking what if it's a really horrible place, got to label her knickers, she needs a new dressing gown, will she ever speak to me again etc etc. Good luck to you and everyone else out there
     
  15. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    Don't hesitate to ask your friend to go with you. They are usually not mind readers!! I had a total panic situation one night when T was taken to hospital by ambulance ninety miles away. I didn't even know the way to hospital so phoned a male friend!! I have invisible family and neighbours!! He was with me in 15 minutes!! Stayed with us all night and brought T home with me. Am lucky to have him. He cancelled his date that night!!

    Sending you loads of support.

    Aisling xx
     
  16. triumph25

    triumph25 Registered User

    Apr 2, 2012
    90
    Forest of Dean
    Struggle!

    How awful all this must be for you. I too feel that everything we carers need or need to do involves a fight with authority of some sort! It's really not fair!

    We are already exhausted with just the normal day to day stuff if caring for someone with dementia, without all the unnecessary hassle! No wonder we need respite!

    Fingers crossed you will get something sorted, before too long.

    If it's any help my OH was dead set against going, and everytime I rang he got upset & cried, so in the end I didn't ring but my sis in law visited and said he was perfectly happy!

    Sometimes they play us up almost it seems deliberately!

    Be strong, good luck & try nit to feel guilty!
     
  17. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Hope you are reasonably ok.

    Aisling xx
     
  18. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Mum's biggest fear was being left alone in a home. I could not cope any longer! BUT Mum has been in the care home for a few weeks now and has put on weight, is taking her medication, has company, is becoming secure in the routine and see's me regularly without the trials, tantrums and trauma. No, she doesn't want to be there but none of the residents do, however, when I leave she is not crying and Mum does participate with activities. She could not be persuaded to ever go to any social club, event or activity other than 'shopping'. The biggest surprise for me is her almost seamless acceptance. My anxiety and guilt don't begin to explain how I felt and it's what brought me to TP. BUT the relief now is enormous. Take a friend, a deep breath be assertive and keep smiling. You can do it. We all did.
     

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