WORRIER123 Registered User

    Oct 1, 2015
    To be honest sometimes I think I have built a rod for my own back
    I've contacted social services again for a care assessment so I can at least try and plan a weekend/ week away
    Not sure how to resolve the boyfriend part. To now move out would be impossible and although no reason boyfriend should move in why should he be subject to the moods the wanting to know what time we are coming and going etc
    P.s been with boyfriend 10 years and so lucky he is patient however he is starting to show cracks from this now and the thought of no foreseeable solution
    Thanks all
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    Why would moving out be impossible, love? Can't you tell social services the date you are moving out and tell them they take over responsibility for a vulnerable adult? --You should not feel guilty. You have a right to your own life.
  3. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    #63 Selinacroft, Mar 23, 2016
    Last edited: Mar 23, 2016
    Hi Worrier 123
    Sorry to hear your long suffering BF is getting a bit impatient. Perhaps you need to allocate a bit more time to yourself. I know this is easier said than done but I do really recommend a chat and a carers assessment. I've just had mine and after talking through circumstances I have been given a couple of useful suggestions to improve the "me time".
    The first idea was to take over the morning shift from the carer for a couple of days here and there and swap it for a lunch time care visit. This wouldn't increase the cost but would give me a longer gap when I wasn't needed at home so once I had prepared breakfast I wouldn't need to be back until it was time for the evening meal . The second idea was finding out exactly what the sitting service does provide and incorporating it somewhere into my timetable rather than just whinging I can't use it for holiday cover.
    Sometimes just chatting things through gets you to see things from a different angle especially if you have a good SW taking the CA.
    Why are they taking so long to do the CA? I suggest you jump up and down a bit louder. I emailed them to remind them I had not had a reply to my email of such and such a date. I had a phone call the next day and he offered to come same afternoon but I declined as wanted time to prepare all my notes so met a couple of days later.
    Yesterday I read this thread and nearly posted that Dad had stopped moaning recently. Even the thought was tempting fete as this evening I have had a torrent of moans again. Dog was in the room, Dog was out of the room ignoring him, didn't want tea, I had told him not to touch tv buttons (yes but hours ago when I was watching something!) , door is open (it wasn't) tv too loud, tv too quiet, I'm running off ignoring him , why can't I stay to listen to him moaning blah blah blah,,,,,
  4. Putting up with too much

    I want to talk of my experiences and urge others to learn from them. Whether you do as I did, many aspects of which I regret, or whether you do things differently, please hold your head high.

    In many contexts where I speak of Dad, I leave it open whether he's alive or dead, but he's in a home, in the advanced stages of VasD.

    I have been gradually 'coming out' with people what utter hell it's been. I was too ashamed to tell most people. Let me put it in a context. Dad had a successful career, but he was drifting into dementia before he acknowledged it, then Mum died. It was a while after that before he had a formal diagnosis. However, I had already been helping my parents for a long time and then I just stepped into Mum's shoes. I put up with quite a bit that I put down to bereavement then when the dementia was diagnosed, he stepped down from such business activities as he was still engaged in, and then I was emotionally dragged in.

    I hoped that we would become closer and he was still a savvy enough businessman to know how to lull the person he wanted a good deal from into false security, so he became nastier, whilst I felt more and more obliged to help, more and more worried how people would judge me if I didn't.

    I excused his treatment of me on the basis of a miserable childhood and difficult early years, ignoring that for half a century he'd had a marriage to a woman who'd given up almost everything for him.

    So he ground me down and others around me, and I found myself making excuses for him. Gradually, I felt obliged to warn people such as ambulance crews, doctors and then, eventually, nursing home staff, how manipulative he could be and how nasty he could be if he thought there was nothing to be gained by being nice to them.

    The difficult thing is that I still love him. And that's the killer. I also empathise with vulnerable people, not least because of the way he treated me and others in my family, especially when I was a child, so I instinctively empathise with him in his pain and distress.

    Like so many people who've been through difficult experiences, I want to say "Do like I say, not like I did, but never feel condemned or ashamed if you don't manage it."

    You did not give birth to your parents, they gave birth to you. It is good and kind and respectful etc. to care for them, but you are also entitled to your life.

    And a particular question I'd ask that you pose yourself is this: looking back over your life, is what they gave to you as much as they and/or you expect from you, when it comes to giving to them?

    If they gave a lot and you want to repay it, fine, give all that you feel able.

    If they didn't give a lot and you want to care for them, fine, but ask yourself why, and do it because of who you are, not because of who they are.

    And most importantly, please, please don't do as I did and fear other people's condemnation to the extent that I put up with more than I should have done. Don't be scared that if you say you won't put up with something people will think ill of you. You have as much a right to set limits as to what you will put up with when the person abusing you or trying to abuse you has dementia and when they do not. Look around you, you will see people that give less care than you do who are not condemned by others and that you do not condemn.

    I don't say don't care for your relative with dementia. It's your choice how much, if at all, you care for them or about them. I say care for yourself as well and don't be frightened of other people's judgement of your choice, whether it's to care 24/7, care less, or care barely or not at all.
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Petrina, thank you for your very thoughtful and candid post.

    A part that especially resonated for me was to think about me caring for someone because of who I am, not because of who they are. I will borrow that one, if I may, please?
  6. RedLou

    RedLou Registered User

    Jul 30, 2014
    A truly amazing post, Petrina. Thank you.
  7. Amy - I have no objection to anyone at all using that phrase, either in its entirety or combined with other words.
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Thank you, Petrina, for the permission and the response. That is most kind of you.

    I know from TP (although, sadly, not as much from my local carers' support groups) that there are many of us who are carers more out of duty than other reasons. I do find it helpful to read your comments in that context (although, of course, others may find them applicable to their situations, as well).

    I agree that I mostly don't tell people what it's really like. Partly because I don't want to moan and be negative all the time, partly because most of them don't really want to know, but partly because I am uncertain about the response.

    Although TP is open and welcoming I still think it's brave for you to put your experience out there and hope, as no doubt you do as well, others may be spared some measure of suffering by learning through your experiences.

    Sometimes, I think perhaps helping each other here, is all we can do.
  9. TooHard

    TooHard Registered User

    Sep 16, 2015
    Thank you, Petrina, for that outstanding post. I particularly appreciate this: "do it because of who you are, not because of who they are" and will start using that instead of 'feel morally obliged' or similar. I think that sums up why so many of us, who may not have had a good relationship with the person prior to caring for them, carry on caring anyway. 'Sense of duty' etc has a slight negative tone but doing it for the reason you've given is so much more positive!
  10. carrieboo

    carrieboo Registered User

    Feb 1, 2016
    herts uk
    Mr Kipling here too - country slices preferably.

    Yesterday's moans;

    So many cars on the road
    It's bitterly cold
    How much further?
    Look at that - building on every little bit of land, there'll be no countryside left soon
    Aren't they slow? (loud voice, M&S checkout) They whizz through in Sainsbury's
    I hardly get out
    They give you far too much (tea served in individual teapot in M&S)
    Don't mind me (bunch of schoolgirls because they didn't part to let her through)
    She never talks to me (her grandaughter) don't know what I've done to upset her
    What arethey doing now? (very minor roadworks)
    This road's been closed for weeks (actually closed that morning)

    The memory nurse told me that pwd either have a personality change or become even more themselves, often with the negative traits. "unfortunately for you, with your mum it's the latter" and he'd only just met her!:(
  11. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    yes mother moans about no visitors too
    TV too loud (you turned it up)
    everyone has a car
    everyone has grandchildren
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Well - I've just driven the 15 minute drive home from DC, with Mil in the back, and been moaned at because of my driving.

    Apparently I delight in hitting every bump in the road, I deliberately seek them out because I know that Mil feels sick when she is in a bumpy car. Other drivers - like her beloved son - can do that journey without hitting even one bump, he drives so smoothly. I could do with taking a leaf out of his book - according to Mil!

    I simply didn't bother trying to explain that each time she complained it was when we had just driven over a speed hump :rolleyes:
  13. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    I'd just like to echo everyone elses response- that is a lovely way of putting it. Caring though a sense of duty sounds as though we do it all most reluctantly, and doing it out of love sounds mushy and not always the words we would chose. Doing it because we are who we are is a much better way of expressing it. If we are who we are because of the person we care for- i.e.parent then all credit to them but if not, we can rise above their negativity and be ourselves.
    I'm kind of enjoying everyone's list of common moans. I know it is not funny when you deal with it but I do feel a shared sense of humour lightens the load and makes us feel less isolated.
  14. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    hey know that one, that and pot holes (UK) I do it to hurt her back
  15. tatty

    tatty Registered User

    Oct 14, 2015
    You never do my hair .... hairdresser comes once a week
    Dinner too big
    Dinner too salty. ... I never use salt in cooking !
    Too much sauce/ gravy
    Why can't I go to day care at 1.30 you can take me why can't they pick me up over and over .... that day OH had taken her to nurse appt , a seperate hospital appt and explained he had to return to work and niether of us could collect and the daycare bus had left at 10am. ....in the end he asked her to stop talking;)

    No day care, they (Oh and me) could be bothered to book me in

    I don't know what you've done to my T.V . believed.younger daughter messed up her sound when putting her tele on the night before (MIL can't get sound on ever either 0 or 100...well I did it okay yesterday :confused: this is an every night occurance

    They have thrown all my shoes away. I can't go out in these things.... podiatrist inspected shoes and suggested new ones 3 pairs of new shoes to stop recurring ulcer.... caused by old shoes:p

    I hardly ever get to go to church.....in 17months missed 5 times... one hour round trip with a 2 hour wait in the middle...my OH is NoT a believer!!

    Did you have a nice time with your friends at church? Well it's not worth going as I can only talk to one person at a time.......( no hearing aid, can't follow conversations, hardly any of them left etc.)

    Why have you written my name on the front cover of my cheque book!? You are going to get into lots of trouble with the bank.... that's a really naughty thing to do.... you are so bad (MiL banks at same bank as me so it was to stop a mix up)

    sister never visits (at least once a week .. with complex heatlth isues of her own)

    I told you I needed new eye drops.... no they are half full mum...I know not you... hadn't been taking the lid off so thought they were empty

    I need more money for daycare, no your fine its £6.50 ( finger pointed in the face) what do you know I am the one who goes you don't know anything, .... OKay..how much do you need ...£50/£20/£13.50.. (so whatever you put in the purse is never correct)
    gosh the mini bus is early today!

    Its a terribly long drive in the mini bus...(15mins max)
    hmm they didn't drop me off first today... I am always first (definitely apt:D)

    Pardon, Pardon, etc. ( speaker increase volume). ... there is no need to shout at me... I can hear:rolleyes:
  16. WORRIER123

    WORRIER123 Registered User

    Oct 1, 2015
    2 days of being kind and how it's not fair I am subject to helping dad he says. Go out for a walk and come back and I am the daughter from hell
    I am in the kitchen making myself a drink - don't you dare make me one I don't want it
    He needs the loo and I help him upstairs and getting seated - why are you always so nasty to me
    I am getting him cleaned up and clean clothes - you always snap at me I don't want any dinner you aren't forcing me to eat ( he's eaten half a pack of biscuits a bag of sweets a sandwich and a soup and that's just for lunch)
    Now I've given him the newspaper to read - you always give me rubbish
    Me thinks it's time for another walk now as I am getting the silent treatment
    Sorry to rant I feel better now xx
  17. @ Tatty

    "Pardon, Pardon, etc. ( speaker increase volume). ... there is no need to shout at me... I can hear"

    It doesn't make it any less infuriating to live with (unfortunately), but did you know there's often a logical reason for this, hence its being a long-standing stereotype of old people? Yes, I'm using this as an opportunity for a bit of education about the sort of hearing loss people tend to get as they get older.

    If you know nothing about hearing loss or maybe you know about a different sort of hearing loss that you or someone you know has, you may expect when people have it is that it's like turning down the volume on the radio and everything sounds quieter so if you turn the radio volume up everything sounds a bit louder.

    But the most common sort of hearing loss with old age doesn't work like that. If there's, say, 40dB loss (which is the level of ordinary speech in a quiet sitting room) at 35dB, the person doesn't hear anything and at 45dB, the person hears something as loudly as if they didn't have loss.

    So if they can't hear you when you speak normally and you shout, it may actually sound like shouting. If they've never learnt about different sorts of hearing loss or have but have forgotten what they knew, they don't expect this and don't perceive your raised voice as an attempt to be helpful, they just know you're shouting at them.

    Of course, knowing this doesn't make it any less stressful dealing with the 'speak up, don't shout' saga, but at least it makes sense of it. Sadly, it also means that you can probably look forward to knowing that a lot of the time you're stuck with it.

    It doesn't help, either, that whereas if someone is deaf from an early age, they may become an adept lipreader, hoping that someone with dementia will learn new skills is a tad frustrating. Well, ok, scream-inducing.

    There is one, consolation, though. If they get deaf, they at least won't hear you muttering behind their back about how you wish they'd stop moaning, so long as you get savvy about which pitches (and therefore which speech sounds/letters) they're deafer on.

    (Me, mutter negative things about how infuriating Dad is when I think he can't hear me? Whatever makes you think I'd do that? :D )
  18. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    After lunch Dad is standing in the front porch, “what have you done with the back door key?” “It’s in the door” “No it isn’t” “yes it is go and look “. “Come here there’s no key” “We never leave a key in this door Dad-you said the back door and the key is always in the back door” “So how am I meant to lock it?” “ I do it at night time Dad, just leave it for now, I’ll do it later” “Where’s my key?” “I gave you a spare last week plus your own and labelled them- where have you left them?” “I want your key” “Why mine Dad you have 2 of your own” “No I haven’t “ “ Come and let’s look for them” “Do you mean I have to go all the way back in there just to lock the door?” “No Dad I’ll lock it later but we need to look for your keys” “Are they in the usual cupboard?” “yes” I looked and said” no they are not here”, Dad wanders off somewhere completely different and produces keys. “ Why do you need my keys?” “I don’t Dad we were just finding them for you” “So when you lock the door tonight why do you have to use my keys, why can’t you use your own? Aren’t I allowed anything of my own anymore?” “Dad when I lock the door I will use my keys and if you need to lock or unlock it you know where your own keys are” “Why do you have to make such a fuss over everything?”
  19. WORRIER123

    WORRIER123 Registered User

    Oct 1, 2015
    Went for a walk this morning and got caught in a downpour. Came home and said wow dad it was wet I am just going to take my wet clothes off and warm up
    Well if you are so stupid to go out.
    Make him lunch and say it's the boat race we are going to walk down and watch it
    Don't be so stupid sit in now
    No it's sunny we are going out to watch it
    Well if you come back wet again I won't tolerate it. Sit down now and watch it here
    No it's sunny we are going out to watch it
    Do as you are told now
    We did go. Came back and had the dinner he didn't want earlier.
    Carers in tomorrow so told a white lie and said I was working.
    I need to be out of the house by 6.30am on my day off but worth it for a break
  20. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    We don’t have any radios .(I pointed at 5 including the TV and HI Fi)
    But they don’t work do they? (Yes they do)
    But there’s nothing worth listening to anyway
    And you can’t tune them in
    The tv presenter has messy hair ( It looked like an expensive hair style to me that suited her perfectly)
    They are silly playing cricket in this weather (It was from Australia)
    Tennis isn’t what it used to be
    All the light bulbs have broken (the fuse tripped)

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