1. canary

    canary Registered User

    Feb 25, 2014
    10,803
    Female
    South coast
    Its a catch 22 situation. All the while you are there she is not considered "at risk" and because she is not at risk, SS wont offer help. I dont suggest that you pack your bags and leave, but perhaps you could step back in small ways. Get in carers and look at day care or respite. Perhaps you could make sure that the house is safe (switch off the oven etc) and install an alarm on the front door which will alert you if your mum opens it, so that there is unlikely to be a crisis, but might show that your mum cant cope.
     
  2. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Thanks @Dimpsy @Pete1 @canary for your replies x

    Yes it is catch 22, while I'm here shes safe but doesnt get SS care and if I leave she might get SS care as long as survives whatever crisis that puts her at risk enough for them to help.
    I know its not SW's fault its the system and the cost that means they have to follow these tick boxes. SW did say she understood why I don't leave mum and didn't think she would either but thats all can do. She told me and mum she didn't think mum could cope on her own and that if I left she didn't think it would be long before a crisis happened.
    Its says on care plan Andrea is aware that sometimes the situation is to reach crisis point. Being aware doesn't make it right though. She didn't put on there that she didn't think mum would cope on her own either though, and I know it needs to be summarised but I don't think assessmemt and needs bits are as detailed as could be, it seems a bit general and misses examples out to me, but then I do ramble on and it is a form with only so much space.
    Waiting for a crisis to react to rathet than preventing one seems to be the way SS act which is probably why there are so many people doing what I'm doing which is sad
     
  3. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    Mmm its difficult @annielou. Mum wandered when I was work so in the end the SS had no choice but to move to the last resort of a CH, as she was no longer safe on her own. It was difficult for me because I could see the changes in her and suspected something would happen, but until it did the status quo was mantiained. Even after that it was two weeks before a place came up for mum and that was only through fighting for it and getting the MP involved.
     
  4. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Thanks @Palerider I read your thread and thought the wait you had even after decision made about CH was terrible. You seem to have really struggled to get help with care for a long time which is so sad and hard. It seems lots of people do struggle to get help and care, not just for people with dementia & memory related illnesses, but all sorts of people with care needs.
    I know theres not a bottomless pit of money to give everybody everything they need but I'm sure things could be organised better and more done. It seems like different areas do things differently and offer different things too. I'm not sure all the different departments and services speak to each other and share information with each other either as they ask similar questions but dont always seem to know what other part has said when come .
    It is hard trying to cope with looking after someone who is struggling while also having to look for and chase up care and treatment.
     
  5. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Occupational therapist came again today to see how mum managed making herself something to eat as she hadnt cooked for ages, told me was bit scared might not do it right.
    I went out for a bit while OT stayed with mum. I must say it was weird being out on my own.
    Mum managed ok but struggled to figure out timing n gas mark, so suggested tryin stickin label on pack with say gas mark 5 25 minutes to see if help. Maybe mum cud try a timer as did keep checking if done and also she struggled lighting oven, you have to push knob in turn n hold in while press ignition then hold it in for few seconds and slowly let go or flame goes out and just have gas. Mum had done this a couple of times previously and we had to throw things out and flap back door for a bit. So OT suggested a gas detector alarm. This would also make me feel bit safer on a night ad couple times mum has turned knobs on cooker to check if off and I worry might turn them on a bit by mistake.
    She also suggested a careline call button which mum wasnt too keen on and as usual said didnt need one and had me. I did get her to agree to OT referring us and someone comin to explain it.
    Ot rang this afternoon to ask me for more details of what i did for mum before stayed here n during and when things got worse. We'd not had chance to talk much the first visit as mum was very resistant to her being there and quite stroppy. So we went over how things had progressed from me visiting normally 3 days a week to every day to staying at mine few times to me staying here and things mum did or asked me or needed me to do.
    She said she had talked to SW and was also going to talk to Memory nurse to try get a plan to help mum. She said SW and her both thought mum couldn't manage without care but had both seen how resistant to it mum was and mum had said didn't want carers. I said that was why SW said she hadn't included carer visits on care plan and as wouldnt be here long and I would still be here anyway there wasn't much point.
    Ot said her and mum had been talking at lunchtime about me needing time for myself and mum saying it wasnt fair her relyin on me etc. But then later on when Ot was talking about call button for when I wasn't here mum shut down atraight away and didnt want to know. I said thats what mum does will talk to me about needing help and wanting help but then other times flips back and refuses. She said she thought mum was anxious and I agreed she is and I also think shes depressed so OT said she would see if could find something to help mums anxiety and that might help her accept help more.
    I don't know what will come of it as mums care plan has been done now but she really seemed to be trying to think of things to help. Of course she'll also be tied by whats available and what she can offer and it may only be a couple of gadgets that help with a couple of things and then theres problem of getting mum to accept things but I did come off the phone with a little glimmer of hope that there may be a little bit of help mum may accept at some time.
     
  6. Pete1

    Pete1 Registered User

    Jul 16, 2019
    255
    Male
    Hi @annielou, I do feel for your Mum, it must be a terrible conflict needing assistance to enable her to live independently but steadfastly refusing any external support, but also somewhere inside she recognises that it isn't fair to expect you to deliver 24/7 indefinitely. Sadly for you Mum is still in the loop with all of it so nothing will change from her perspective.

    The Careline worked really well for Mum, and not just for falls (which did occur) but the occasional episode when she was scared during the night and couldn't use or find the phone. I can highly recommend it. I agree with you that at the moment it is pointless with you staying with Mum, but it may be worth thinking about getting an infrastructure in place as things could change either through the loop breaking as the dementia causes greater decline or other health issues. It is probably the same with carers, you could arrange for carers and to be there initially so that Mum gets used to the idea, again it might make it easier further down the line.

    I was wondering @annielou how you were feeling mentally and physically through all of this?
     
  7. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Thanks @Pete1 x hopefully OT has refered mum for careline button and when they come to explain it mum will hopefully agree to it, then if at some point I do feel able to leave her alone be it in day or night it will be there for a bit of added help.
    I'm feeling overwhelmed and out of my depth. I also feel disappointed in myself for how badly I'm dealing with all this. I feel so sorry for mum, and I do want to help her, but I also feel sorry for me, which I feel guilty for feeling that way. I feel like I've had to give up so much to care for mum and it has taken over my life.
    I'm shattered as I don't get much sleep at mums with her waking at night and waking up early and even when I had a couple of nights at home and also before I was staying at mums I found it hard to switch my brain off from worrying about mum and took ages to get to sleep. During the day I'm constantly watching her to check what shes doing and she wants my attention all the time and although she often nods off during day and evening if my eyes start to close she always notices and says your not going to sleep are you and gets the hump.
    Hubby says I look shattered and on the brink of tears all the time, which I am. I have bags and dark circles under my eyes no amount of concealer can cover and hubby says I look like all the life has gone out of me too which is pretty much how I feel.
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    797
    Female
    cornwall
    Bless you. You sound like you are on the verge of carer breakdown.I felt like that last week so I can empathise.
    Dad has carers in as I cannot /and will not be there with him 24 /7.He is high functioning and has awareness .
    He didn't want to go into respite but I simply told him that I was backing off for a fortnight so it would be the carers or respite. He went.

    Would your mum agree to respite?? You cannot carry on like this .Sometimes as is often said on here.. "their needs overtake their wants".....
     
  9. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Tonight has been another upsetting night where I'm dissapointed in myself for being upset at mum and feeling guilty for it.
    It had not been too bad a day really until tonight. A few minor, but no major upsets. Mum and I went over to my house for a bit today, mum wanted to get out the house and I got a chance do some washing and pick up more clothes for me and it went mostly ok.
    Hubby took us back to mums just before 8 and we were fine for first hour and a bit at mums, I was textin hubby and sis for a bit and I was watching tv and chatting to mum.
    Then mum nodded off just after nine, she nodded for about 3/4 an hour, only occasionally waking up for a moment, to turn tv down before nodding back off, until she woke up just before ten. As I could barely hear the tv I came on here for a while while she was sleeping and was writing my last post when she woke up.
    After she woke up she started switching channels and fidgeting and then started complaining I wasn't talking to her and had been on my phone all night ignoring her and she didn't know why I had come.
    I tried explaining I hadn't been on phone all the time and we had been chatting till she fell asleep, which was when I'd picked my phone back up and she had only just woke up, but she wouldn't have it. She denied we'd been chatting until she'd fallen asleep, denied falling asleep, denied turning tv down so low I could barely hear it and said I must have done it despite her having remote next to her.
    After a few quiet minutes I tried chatting to her again about something she had just put on tv but she switched it over again and ignored me and then kept getting up going off looking for things and huffing and puffing when she came back in the room.
    Then she went off again and came back with some bedding and started talking a bit confusingly about it, I think it was for me to use tonight, so I told her thanks but I've already got my pillow, sheet and quilt here. So then she got annoyed at me. She asked me more oddly worded questions about heating, tv, food, sleeping and going to bed, all rather oddly put but I answered as simply and as best I could but she just got more annoyed at my answers.
    Eventually about 11 she went off to bed chuntering you can do what you like cos you always do, everything has to be about you, well you don't have to come anymore cos you don't talk to me, I'm off to bed and won't bother you anymore.
    I just sat quiet as she seemed to have woken up in an arguing mood and I don't think it mattered what I said, she was in the mood to be annoyed at me. I was upset and feeling sorry for myself and frustrated at her directing her anger at me.
    As usual she got back up after a few minutes and came out asking and checking if things were off and doors locked a few times so I answered her and sat and waited until I thought she had gone quiet and might settle and then I started making up my bed etc.
    She came back out again to ask if door locked and then asked me if i was sleeping on that (my fold up bed) then asked where sis was. I told her sis had gone home on Monday. She said have you been here on your own since then, what about the other people who stayed. I explained its only been me staying here, apart from when sis stayed for a couple of night this weekend and a couple of nights three weeks ago. She said she didn't realise that.
    Then she said she was sorry and started to cry. I asked what for, and she said because she'd been nasty to me and I was on my own looking after her. I told her it didn't matter and not to cry. She said she didn't know why she had been mad at me but she knew she had been and she shouldn't have. I told her it was ok not to worry about it and go to bed and we'd both have a good sleep.
    She went to bed but then started saying she didn't know what to do and should be in a home and started sobbing so I took her a tissue in. She asked if I'd stop loving her and I said no I'd always love her. She kept saying she was sorry it was because she didnt know what she was doing and she shouldn't be nasty to me.
    I felt so bad for her. She looked so confused and scared laid there crying and wiping her eyes. I felt so bad for being frustrated and upset with her earlier.
    I stroked her hair and told her I wouldn't stop loving her, that I'm still here. She kept saying she doesnt want to be nasty to me and shes sorry she is cos she hurts me, I told her I know its not her fault, at the time I forget that and get upset but I know she doesnt really want to hurt me, its not her fault. She said she was sorry and i said i was. I told her not to worry about it now, we're both tired and need a good sleep. We both said we loved each other and said good night. And I came back to my bed and sat here silently crying, feeling sorry for her, and feeling guilty for feeling sorry for me too.
     
  10. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Thanks @TNJJ Mums been allowed 4 week respite but hasnt agreed to go yet. We did go look at a home near me on Sunday but though she said it was better than she thought and the staff we met were lovely she didn't want to go. Maybe one day though.
    I hope you are starting to feel a bit better and your dad is settling ok in respite xx
     
  11. Pete1

    Pete1 Registered User

    Jul 16, 2019
    255
    Male
    Oh @annielou, that makes such sad reading - what you are going through is absolutely heartbreaking, you are going beyond the call of duty and your Mum takes her frustrations out on you. Please do not for one minute feel guilty if you do have a cross word, I think pretty much everyone caring for a loved one with Dementia has done that at some point (or many times!), it is perfectly normal......and probably one of the only plus points in the dementia horror show is that Mum won't remember it! I do feel for you both,

    It does sound as though you are at breaking point, even your Husband can see it. What would happen if you did get poorly? It isn't sustainable. I think you or perhaps your sister need to arrange the respite care for your Mum now, I don't think she will ever agree unless it is arranged and a date is in place. Then also arrange the careline and carers to come in (so that your Mum can get used to it) at least that will provide some break for you. In my experience you have to go and do it, the loved one will always say they don't need it and can cope and 'I'm not having strangers in here' etc etc.

    I hope you have a better day today. Hang on in there @annielou and keep posting.
     
  12. Wildflowerlady

    Wildflowerlady Registered User

    Sep 30, 2019
    20
    Hi @annielou,
    Its so hard when your PWD is not nice to you. I visit my dad around five afternoons a week he does have carers 4 times daily. I know it sounds bad but genuinely I do sometimes wonder why I go to see him as his moods can really get me down. Dad can be really off with me sometimes he kicked his coffee table last week just because I wanted to check his freezer for shopping also made a verbal threat to me. Dad can get argumentative over the smallest of things and it can be within minutes of my arrival. It makes me think is it me, is my very presence causing him distress? but I know he can have a rant at his carers too. I do my best but it does hurts and I bite my tongue, frequently tell myself he just can't help it. Dad can deny he said things can say why have you come etc. I have taken the approach recently that I will say would you like me to leave dad rather than get in a big argument and if he says yes I go home and just try again next day. You are doing a fantastic thing for your mum but you will run yourself into the ground and like someone else has said what will happen then. I am exhausted, my partner has Parkinson's which has progressed a bit more so some of my time with dad had to change earlier this year but I still feel very tired. I can only imagine how totally exhausted you must feel and I know for sure I couldn't do what you are doing. I hope you will get some support soon which you mum is acceptable to having. My sister and I certainly couldn't manage dad at his home without care coming in as well, my dad does live on his own as mum passed three years ago.
     
  13. annielou

    annielou Registered User

    Sep 27, 2019
    230
    #133 annielou, Nov 16, 2019
    Last edited: Nov 16, 2019
    Thanks @Pete1 @Wildflowerlady for your replies x x
    Love to you and your hisband, dad and sister x
    We had a bit better day and evening yesterday although I was really tired and felt quite foggy and wobbly in the evening but luckily mum was quite quiet and not aggressive or argumentative most of the evening.
    She nodded off a few times and I must have nooded off for a few minutes about half nine and mum must have noticed so woke me up. Though she nods off often, she doesnt like it if I do, even though I must have only had my eyes shut a few minutes. She asked me if I was tired, and if it was because she'd woke me up in night again.
    Then she told me I could go to bed if I wanted and I said I'll wait till you go. She said she wouldn't be long because she was tired then started talking about her bedrooms and which did I sleep in. I explained she only has one bedroom and I sleep on fold up bed in living room. So she said maybe she should move somewhere bigger so I had a room. Bless her for trying to think of a solution but not really the one I'd hope for.
    I thought as she was tired and she knew I was tired she'd go to bed soon, she normally goes around tenish, although she has been later this week, but no, she stayed up till after eleven. She kept talking about being tired and bored with tv and where I slept and where she slept and who else was staying with her.
    Luckily her night time getting out of bed and checking things was one of her shorter spells and for the first time ever she didn't get up in the night at all until 7am. Unfortunately my flipping brain wouldn't shut off so it took me ages to go to sleep and I woke up at half three and about every 3/4 an hour after. Seems even when I could get a bit of sleep I don't :(
    I'm still rather foggy and wobbly today which has made todays trip to the supermarket harder than normal.
    Trying to shepherd mum round making sure doesnt crash, answering her constant have I got, do I need questions, telling her what to buy and trying to intercept her picking up of stuff dont need, (missed the smoked bacon which doesnt like today) while also trying to do shopping with hubby as well is hard then theres putting her stuff on conveyor and stop het packing them in bag before been scanned, help her pack and pay then pack our shopping.
    She got rather annoyed today when I stopped her packing her shopping before been scanned for 2nd time and told her where to stand at bottom of till to pack and thrn kept snatching things out of my hands when we were packing and hit me albeit it gently when I pointed to her clubcard which she had just asked me where it was. As we were leaving she stopped, blocking entrance/exit, searching in her bag I asked what she was looking for and she snapped her keys so I told her where they were but she didn't need them yet as going to my house and lets move cos we're in the way, she asked why I was always snapping and telling her off. Pot Kettle Black mum !
    I've just added a generous 4 drops of rescue remedy to my tea and think I'll certainly be needing more today
     
  14. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    171
    Hi
    Ive been reading your posts as you are now in a bery similar situation to me when you said thats how i am !! A inmate in dads prison ! Im currently living with him and cant see a way out im willing to have him live with me ( im council ) they are being very difficult and akeard and say he must basically sleep on my living room floor for a yr and i cannot swap till after 1 yr ! Neither can I permanently live with him in case i should be made homeless if the situation changes and he needs ch i cant win ive no help im tearing my hair out with stress my dad has no toilet problem and mobile fairly coherent 60 /% of time ive spent 2 yrs trying everything to get help it’s heartbreaking and now been told look at homes in area to discover there all rated inadequate as hes not going to be fully funded i don’t even want him in a damn home but will have to if it comes to it but not untill he’s advanced..so sad , have a look through my posts and you will see 18 months of him gradually getting worse ! I had carers no fault of hes own just agency being a holes not doing contract properly sorry for rant , but no more so now cannot even go out for a hour !
     
  15. annielou

    annielou Registered User

    Sep 27, 2019
    230
    Hi I've read some of your posts and you're definately struggling and been through a lot, rant away I don't blame you x
    Its like being trapped isn't it, much as we love our parent and want to help, giving up so much of ourselves feels too much, and trying to get them to accept help and then find some thats suitable is so hard on top of being with parent all day and night with little sleep.
    Mum hates not having all my attention so if I leave room to do something or to ring anyone she comes looking for me complaing. Even looking on my phone riles her and when we go over to my house and I try looking online on laptop she gets annoyed and I can only do it in short occasional bursts as I cant cope with the moaning and accusing for long. She's not happy I'm on phone now.
    Your housing situation is making things so much harder for you which must be so frustrating. Council criteria for housing and moving is ridiculous. Mum used to be in a council house and years ago wanted to downsize after me and sis left home, trying to move houses was such a farce and took forever as she had to do the swap thing too. Finding someone who has what you want and wants what you have is like winning lottery.
    I do hope you strike lucky and get some thing sorted soon, you certainly deserve a break x
    x hugs x
     
  16. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    171
    Yes ive got a fight on my hands as my council is inhuman devoid of common sense and kindness unfortunately but I will keep fighting for common sense and my dad to live with me i feel right now hes too well to be in a home if that makes sense and im willing to try and have him in my home to look after him !
    Yes I feel trapped seems like the more sicker my dad gets the less help too i get
    i eat breath and sleep dementia it’s completely taken over my life and traumatised me left my son depressed etc the whole family has suffered over the last two yrs as its been at its worst and it’s certainly not over yet x
     
  17. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    877
    In view of all this is it wise to have your Dad living with you?
     
  18. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    171
    Im already living with him though just in hes house while im living out of a carrier bag sleeping in a fold up bed understand what your saying that it will effect him more but my son is not engaged in helping too much and has a busy social life and girlfriend hes getting on with hes life and will be moving in a couple of yrs i feel its the only way is too move my dad in either way im not getting any help theres no big magic wand
     
  19. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    171
    What would you think was your solution?
     
  20. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    877
    I think I would be looking at residential care.
     

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