1. annielou

    annielou Registered User

    Sep 27, 2019
    216
    #81 annielou, Nov 3, 2019
    Last edited: Nov 3, 2019
    Thanks @Rosalind297 unfortunately sis lives 3&1/2 hours away and can't be here a lot. She has been doing a lot of looking things up, online form filling and ringing round, which I struggle to do being with mum all the time and her wanting my attention. Sis may be able to come down next weekend so if she does I will try again to see if mum will go look with us and if not see if sis can.
    We dont have any say over what mum does, SW asked if we had poa or lpa for mum and I said no. She said she thought it was too late now for mum to give it so at minute unfortunately we're stuck with mum deciding, unless something like a crisis happens and then neither mum nor us will have a say and SS will step in and decide.
    SW mentioned DOLs when talking about finding a respite home for mum as she said otherwise mum could just leave. I meant to look it up after she'd gone as I wasn't really sure what it was but got caught up talking to mum and had sort of half forgot it till now. I must go goofle it.
    I hope your mum settles in her respite at end of month and it goes well. Seeing them anxious so much of the time is awful isn't it. I try my best to answer and allay mums fears but she forgets what I say and it soon comes back or she worries about something else.

    @Palerider sorry you had a bad night x I hope tonight is better for you x
    It is really hard to manage a day of constant attention on very little broken sleep.
    I had a bad one too, though its pretty normal for mum.
    Midnight must have been the time for waking mums last night. Mum too got up at midnight (after her last time of asking is the door locked etc at about twenty past eleven), she got up as I had just finished making up my bed and getting in it. She seemed quite annoyed and was quite snappy with me, she wasn't making much sense but she seemed to be intent on getting some bedding from the hallway near front door for my sister. I tried to get her back to bed gently but she wasnt too impressed with me and telling her she didnt need bedding, sister wasnt here and she doesnt keep bedding in there anyway just got her grumpier but she did go to bed. Albeit chuntering her favourite retort that I always have to be right! And moaning in bed to herself for five minutes about me interfering when shes trying to do something. We had a couple more loo visits and checking I was there before her half six light on check time light off routine started until she got us up at 7. In between mums grumpy bedding search and the next loo visits about 2 in the mornin a neighbour was getting in and out shutting taxi doors for about five minutes, probably going on holiday, which woke me up too.
    We're thinking of going out somewhere today too though I don't know where as mums legs get tired really quickly and ten minutes into a shop she just looks shattered and not with it.
    I hope you get more sleep tonight and a more setlled couple of days to prepare for your mums upcoming respite as I imagine you'll both need your strength for that day. X
     
  2. Pete.

    Pete. New member

    Apr 28, 2018
    4
    I or should I say my mum, was lucky when she became ill. I was single, no children... just mum to worry about. I smile as I type this because so much as I love her ,,,,the lady at times drove me insane. For example. Mum would not settle in bed if the curtains were closed ? When open, shadows cast from her nieghbours trees used to frighten her. Picture me at 3am sawing said trees down!!! Neighbour blamed window cleaner( thats another story). DO try and get someone to cover for you and give yourself/ partner sometime together....was it really water in that glass? So many tears shed and everyone worth it ..x
     
  3. annielou

    annielou Registered User

    Sep 27, 2019
    216
    @Pete. Tree cutting at 3am :eek:
    I'm similar to you except I'm married but no kids and don't work, so could step in to help mum. Well I sort of did work, strictly speaking I'm a self employed crafter, not that I ever made much money, but as mum wanted more and more visits over the past year I stopped doing craft fairs, stopped taking as many orders, stopped making as much to sell online and a few months ago gave up the regular monthly order I was doing, I haven't made anything at all for weeks now.
    Like you I love mum to bits but she does drive me mad at times too. And things now are so hard for both of us and its definately taking its toll, tears are a very frequent occurence.
    I miss crafting, miss my own bed and house, which I get to visit but not stay in at the moment, I miss my hubby, spending time on our own and I miss my mum, the mum who I could visit and chat and laugh, and talk about most things with.
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    774
    Female
    cornwall
    I’m out of my own house 4days a week.Kids grown and flown the nest.I have no partner so it’s all down to me.I love my home.,when I’m here.
     
  5. Ruth1974

    Ruth1974 Registered User

    Dec 26, 2018
    36
    I empathize, but rationalize also. My O/H will phone me five minutes after i have left the house because hevis bored and lonely. As soon as i come home and the kids come home from school, he goes to bed because its too noisy. He wants us there, but just sitting quietly. He wants to go out but when i take him out he wants to come home.

    The bottom line is that he is trapped in this horrible disease, nothing i do can make much difference and i am not going to be a prisoner.
     
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    774
    Female
    cornwall
    That’s why I have boundaries with dad.There is only so much I can do..
     
  7. annielou

    annielou Registered User

    Sep 27, 2019
    216
    Thanks @TNJJ & @Ruth1974 I've never been good at boundaries especially with mum.
    Though she gets annoyed at me and is fed up and bored even when I'm with her, I think I'm mums safety net now, she wants me with her all the time. The time I spent with her creeped up and up and now I'm staying with her I am with her all the time, which has probably not done either of us good long term.
    At some point I will have to step away and let others who are strangers take over at least some of the time and that will be so hard.
    Mum, and me too, are both really shy, self conscious and intimidated by and rubbish with strangers so even without being scared and embarrassed about whats happening to her mind and reliant on me mum would find it hard to accept help from others and settle with them. By stepping in to help and be with her I've probably made things harder for her
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    774
    Female
    cornwall
    Your her daughter and you love her..(same with myself and dad)it is not easy to allow others to help.Nobody can do it like you.Nobody can understand your mum like you..But you will have to step back otherwise you will be like me (dad has carers 4X a day) .You will end up dreaming,thinking and doing of what you can do for your parent.Time consuming and very stressful.You can only do what you can do.Plus you have a husband who needs you as well..Good luck.
     
  9. annielou

    annielou Registered User

    Sep 27, 2019
    216
    So true, mum is constantly on my mind. She has been settled in bed for over an hour, it didn't take her too long to settle tonight which was good. I'm shattered and know she'll be up a few times and then awake early in the morning and so I should try to get to sleep while I can. But my mind wouldn't shut off and I sat here worrying and thinking so put off going to bed. I've been looking online and worrying about her at the same time instead.
    It doesn't help that my bedrime norm was late to bed bout 1-2am and late up bout 9am. With mum, besides the disturbances in the night, I'm awake early as she wakes up and cant settle again early morning, usually between 6-7am sometimes 5.30am, so I lay there listening to her check the time and talk to herself till between 7 & 1/2 past when we get up.
    I suppose I better try get to sleep now.
    Wishing you pleasant dreams and a worry free night x
     
  10. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    95
    This is so true. I do practically everything for Mum and think about very little else. Brother has been persuading me for several years to try residential respite for her and the home I eventually allowed us to find is excellent (multiple testimonials from people we know whose PWD are there, good CQC rating etc). BUT no matter how many carers there are there , they will never be able to provide her with the 121 care that I do, nor understand what she wants and is trying to say like I do. However, it has gone far enough now, I have to let the professionals have a go, at least for a few weeks. The confusion and anxiety I know she will experience is dreadful to contemplate but the longer it goes on the worse it will be when it finally has to happen. You are right, there has to be boundaries, a line over which we should not be expected to step.
     
  11. TNJJ

    TNJJ Registered User

    May 7, 2019
    774
    Female
    cornwall
    There has to be.For your own sanity!
     
  12. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    61
    Reading this thread, and similar ones, first of all I think you are amazing people, doing such a difficult job and managing to retain some sense of humour. But...it confirms for me that I cannot take this on for my mum. I suspect that when you started your caring roles, it was in circumstances similar to mine now: AD present but not too bad, then a crisis comes and of course we drop everything to deal with it, and little by little our lives are taken over. I am standing on the edge of that slippery slope but have decided to step back now, so that the "powers that be" cannot assume I will take responsibility. This is very hard to do but for me and my parents it is right, I think.

    What I am doing, albeit mostly from a distance, is supporting my 92 year old disabled dad to similarly resist being cast in the role of carer. This is much harder, but even more necessary, there is no way he can look after mum.
     
  13. vivcary

    vivcary New member

    Nov 4, 2019
    3
    Female
    Hi I’m new to this so hope I don’t say anything to offend anyone. I was looking after my elderly father who to was demanding. He would get up at night constantly wander around the house confused and he to seemed to be in a time loop we constantly went over family deaths where’s your mother (she passed 9 years ago) where’s his brother, mother father etc and also he would get ready for work he’s been retired 30 years. Myself and hubby gave up our home to move in with him as we terrified something awful would happen to him he had already been robbed at the doorstep by rogue traders and we thought it only a matter of time before something awful happened. 2 years on and I’ve had to give in and get him care in a home recently he became more and more confused and with it came the aggression I was genuinely scared . He became so bad that the actual stress of it caused me to have a mini stroke and end up in hospital. At first he was aggressive to the carers in the home but this has all settled down now and he seems happier he has round the clock care by people who are not stressed by the situation. I also contacted ss for an assessment but by the time they got round to coming he was already in the home for respite care they certainly came with an agenda to get him back home but as they were doing the assessment dad told them that he was living with his mother and father who took care of him that at present he was in a amusement park and that she had to go because he needed to get ready for school (he’s 90) ss gave up at the point and said they wouldn’t come back until 2 weeks later when by then I expect they are hoping for a miraculous recovery. In fact he is going downhill rather fast sleeping most of the day and even less at night now is now incontinent and has decreased mobility he is back to being a child and the family he has now no longer exists to him I feel so guilty for him being in the home but it is a nice place where he gets everything he needs I suppose what I’m trying to say is to repeat what a cousin of mine who through this to said accept this for what it is realise that it is not going to get any better and it may get a whole lot worse sorry for waffling
     
  14. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,461
    leicester
    Hello @vivcary and welcome to DTP
    It’s good your father has settled in the home that must be a relief to you and your family
    Now you have found the forum I hope you will continue to post, it’s a friendly and supportive forum
     
  15. annielou

    annielou Registered User

    Sep 27, 2019
    216
    @Rosalind297 good luck with the care home stay, hope it helps you and your mum x
    @CardiffGirlInEssex thats just what I did. I gradually started doing more and more things to support mum, visiting more, ringing more, took note of appointments, birthdays and events to remember and reminded her, accompanied her to appointments and then took over arranging them, took over managing tableys, drops wheb had take them, took her shopping for years but then started checking what she needed and reminding what to buy and check dates, started reminding and checking she'd paid bills then took over paying them, dealing with her benefits and landlord, reminding when jobs in house needed doing and then often doing them, then the calls and visits got more and more and longer and longer and every day till I was with mum more than I wasn't, she didn't like us doing other things where we werent at home to call if she wanted us, then mum had a few major panics where got really confused and was scared on her own and called us out late at night or very early mornings, we had her to stay with us a couple of times but it was hard as I have stairs and she now wobbly on her legs so the next time I came over to mums to be with her at her house, then the next time it happened I stayed over with her, that was 3 weeks ago and I haven't left. I've slipped down that slippery slope and now seem to be mums carer rather than daughter. Good luck with supporting your dad and getting care for your mum x
    @vivcary that sounds scary, dads aggression and your mini stroke. My mum gets quite aggressive and annoyed with things which she directs at me, but its upsetting rather than scary thankfully. I hope you are recovering and doing ok after your mini stroke. It sounds like being in the home is helping your dads aggression and you did the best thing for all of you x
     
  16. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,643
    @annielou I have been following your post and it saddens me that you are in the exact same place that I am because this is no life.Mum died 8 years ago and she had already expressed concerns over dad's memory. I hadn't noticed but it soon became apparent that dad had a problem but nothing that could not be coped with.

    Like you I started to help dad out with little things and spending time with him to try and keep him happy. We lunched 3 times a week and I would stay one night a week to watch TV with him. It was all very manageable to start with and I could still go to work and even have holidays but that changed two years ago when I had to stop dad from driving (long story) but it had to be done.

    Dad was diagnosed alzheimers in 2017 and he has gone down fast since then. Shortly after this dad stopped eating and I had to do breakfast and dinner and shopping for him because he became to frail to go out. We continued like this for a while before we found out 18 months ago that dad could not eat because he has advanced oesophageal cancer so lots of appointments, stent fitted and dad could eat again so all well and good although he still had a terminal prognosis. So I carried on with the care the same as before but it was more difficult because dad could only eat certain foods safely. Anyway I left work at about this time because it had become impossible. The only help I got for a long time was from my husband who went on to have 3 heart attacks in 3 months so I was under a lot of stress at that time.

    Dad had a hospital stay of 3 weeks back in March with pneumonia followed by a heart attack, 3 falls and a stroke but he recovered and came home. Now it is 24/7 care and like you I see my husband when he takes over for a night or 2 and I then get to see my son although he is very good too and will help me out if needed. I also get some help from my brother who was previously an invisible for a long time but it is not enough and can never be enough. You sound like you have taken on so much alone and it is impossible.

    Dad will be 90 next year and we have been told that his cancer has stabilised so he could go on for another 5 years although that is unlikely to be honest but you never know.

    What you are doing is unsustainable for any length of time. I spend my days and nights with a very pleasant and witty dad who does not know if it is 4 in the morning or 4 in the evening, he sleeps most of the day, thinks he is very fit when he is in danger of falling and likes to move nick nacks around. He cannot be left at night because he can't find the kitchen or bathroom, he can't even switch the TV on, he shaves 3 times a day, does not wash very well and I could go on and on like this.

    I am lucky in that dad is compliant and still funny but this has worn me down and I don't know how my marriage has survived but it has somehow.

    This will take it's toll on you if you let it, I don't know the answer but if you don't get help you will become like me, a prisoner in your parents home and that's what it is. I get day release every now and then and I know I should get out and enjoy myself but I don't, I just go home and hide in the house because that is how it has become for me. I am in my 3rd year of full time caring (meaning I got to go home at night) but 24/7 is a killer as far as I am concerned.

    Get some help before you end up like me.
     
  17. Lirene

    Lirene Registered User

    Sep 15, 2019
    132
    And me, as have a similar story with my mum and husband. Please get some help before it is too late for you, your husband and your marriage- not all marriages survive xx
     
  18. annielou

    annielou Registered User

    Sep 27, 2019
    216
    In a bit of a panic this morning. Mum has her CT scan today, and I've started worrying how mum will manage. I usually go in to the room with her at appointments but I won't be able to go into scan will I as even the people doing it leave the room. Mum will be nervous and probably get more confused then and not take in what they're saying.
    I got the letter a couple of weeks ago and I did think about it then but was really just thinking about the fact she also has a check up at eye department for her macular holes this morning and was worried about fact she'll have had drops in her eyes and if that would affect the scan.
    Memory nurse said it woukd be fine and not affect scan but now I'm thinking she doesnt see as well after drops and the appointments are only about 2 & 1/2 hours apart so getting about is not as easy. Also mum has no sense of direction, never has, so when finished with scan and they let her leave she'll have to find us in waiting room on her own as at hospitals staff usually show you way in when called but not out don't they.
    Its going to be a scary day for mum as she always gets in a state when going anywhere, her tummy is isually upset and she back n forth wondering if needs loo before go. She hates hospitals and doctors, hates waiting, usually spends the while time we're waiting asking me what shes there for because she cant remember, asks me what she has to say, which she forgets anyway and wanting to go home and come back another time because its busy and slow.
    So I'm dreading today and worried about how mum and I will cope. Luckily hubby has took day off to take us so at least thats one thing
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,859
    Kent
    Hello @annielou

    I had the same concerns when my husband had his scan. He was terrified of hospitals too.

    It all went well. I sat in the waiting room while he was taken for his scan and when it was done he was brought right back to me. He had not been frightened so the staff must have been very considerate with him. It was 100 times better than I had expected.

    As far as the eye drops are concerned, you will still be able to be with your mum and help her. It`s only actually going into the room for the scan when you will be unable to accompany her.

    Staff at the hospital know why your mum is having the scan so will be experienced in dealing with nervous patients.
     
  20. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    95
    I’m sure if you explain the circumstances when she is called, a nurse will bring her back to you in the waiting room. It won’t take them long to do and I’m sure they won’t want a distressed elderly lady wandering around the hospital getting vocally upset. In my experience, hospital staff are very conscientious and kind when it comes to vulnerable people and probably have set procedures for the situation you are facing.

    Snap! with the macular degeneration and the impatience in hospital waiting rooms. In fact, the last time my brother took her for her MD review appointment, she actually walked out as they were taking so long and refused to go back so she was discharged from that department! I take her to Audiology twice a year and they are very prompt but I still get the “why are we here? Why are they taking so long? What have I got to do? Do I have to take my clothes off?” Over and over again.

    So I wish you GOOD LUCK for today - there might be a few challenges but I hope it goes off better than you anticipate.
     

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