1. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    Today I went to visit 2 care homes close to me. Both were nice and comfortable with endorsements from visitors who happened to be there. I shall keep their details, put Mum's name down on waiting list and then see how much longer I can carry on.

    I feel guilty. Mum does not know I am looking- would be heartbroken but it's getting harder. Today Mum didn't get washed or dressed and has stayed upstairs all day. She gets easily tired and really needs help from a carer. I don't want to do it as I look after my daughter. I said to Mum we can get a carer in for her. She says she doesn't need it and I could do it instead. I said I don't want to do it. She says now that she has no more use I don't want to know. I will add she has lived with me for 8 years. She always accompanied us on holiday when we still had them and I included her lots of times when I did things with friends because she was a good Mum.
    The last few nights she has called me to accompany her to the toilet as she is unsteady. Once in there she will sit for half an hour, this is in the middle of the night. She has a commode in her room but doesn't want to use it as its for old people and then adds I suppose you are fed up helping me. Well yes I am. It's only a few months ago I was getting up around 3 times a night with my daughter.
    To top it all off this morning I fell down the stairs from halfway up when I missed my footing. Now all sore down side.

    Writing it down I can see I really am not being unreasonable but why do I feel so awful and guilty at looking at homes. I know I can't carry on like this and I know too that my Mum hasn't really got much quality to her life always coming second after my daughter whilst with me.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,831
    N Ireland
    You will never outrun the guilt monster. However, if you know you can’t go on as your are and that your mum will be somewhere which will take good care of her you should try to be at ease with yourself. I know from your past posts that you have a heavy cross to bear so don’t beat yourself up.
    Good luck to you.
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,022
    Female
    Chester
    I think you've done amazingly well to get this far. There is a TP guilt monster stick, which I think you need right now.

    Based on what I've read on TP from other's situations, your mum is at the stage she needs lots of attention, which most lone carers can't manage, let alone someone in your boat, you sacrifice enough for your daughter, and she needs you, so you can't afford to burn out. Your mum may well thrive in a care home, and you may get some quality time with her when you visit as well.

    Look at a few more homes, and put her on the waiting list, the good ones will have longer lists. If it gets to a crisis, you won't have a choice.
     
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    I too looked at care homes without dad having a clue...a couple because I had no choice had to take dad with me...he wasn't aware it was a care home ...I said I had a meeting. Had to trick him to get him to the care home he went to...the horrible feeling the night before of labelling his clothing getting all his things together...not much but his whole world...will never leave me knowing that he didn't have a clue of what was planned felt so deceitful and wrong. Since then to end of his life there have been many many times that I have had to feel these thoughts again BUT it was the right thing to do for dad at the right time and dementia made the decision and it was necessary in dads best interests to keep him safe and looked after. 9 months on from his death I still have the guilt monkey but I also know I could not have done any more than I did for Dad and the decisions I did take were out of love for him. I know what you are going through and it is very hard emotionally but deep down tell yourself it is all very much for the right reasons however much it hurts you. Hope you have recovered from the shock of your fall...take care
     
  5. MaryH

    MaryH Registered User

    Jun 16, 2016
    120
    Ottawa, Canada
    Father Ted,

    The guilt monster is pretty bad. you coping with your Mom for 8 years plus a daughter with high needs are very commendable and you should not feel guilty about it since it is too much for too long. Don't let yourself get so much to the edge that you will have trouble managing and end up in a burnout situation.

    Mom have said that if she is a burden she should jump but she is afraid to be broken than dead. I had to refer Mom to Geriatric psychiatry since I found her when she was dehydrated due to increased water pills from cardiologist (when my sister forgot to inform them mom has been extremely non-compliant) caused her creatinine to shoot up and having delirium and paranoid episodes almost a year ago.

    Mom does not really understand how much I have been shouldering and to how much pressure I have been under with her recent decline and vascular dementia diagnosis, dad's hitting mid stage Alzheimers and vascular dementia this summer with behaviour problems and verbal abuse before he had a stroke where he is paralyzed on the right side, getting their house fixed and sold plus assorted other issues I am dealing with.. But mom's copying dad's problematic behaviours and her paranoid ideas are crushing me. I am used to a high stress job before so I had no problem going toe to toe with hospital that tried to push dad out as a 2 person lift but last Sunday Mom copying my dad's mother's cited behaviour of hitting her head against the wall to control dad's family totally floored me.

    Brother promise to do things, does something a couple of times then stops without communicating. Sister and BIL have been stepping up a bit more so I have come down for 90% that started about 4.5 years ago to about 2/3 now but Mom is causing a number of meltdowns with her paranoid ideas such that I am pretty burned out. Dad is going to a nursing home by necessity but my sibling wants mom to go to a retirement home too and I think I am done fighting them since I cannot keep putting myself together like humpty dumpty. I am also starting to resent mom sucking so much energy out of me that Dad is getting the short shift since it is starting to take me days to recover from the each meltdowns now and Mom caused 3 in 2 weeks or 9 in about 2 months. Mom even accused me of abandoning dad twice when she agreed a week prior we did not have any choice then nursing home in view dad was a 2 person or mechanical lift. She has also accused me and my sister abandoning her...

    I have come to realize everyone have their limits and sometimes you don't know it until they smack you in the face and it might be too late then.
     
  6. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    Sad to say, people with dementia are hardly ever going to understand the strain they are putting on family carers. They are just unable to.
    So please don't feel guilty - there comes a time for so many of us when it's just too much to cope with any more.

    Might add that there was a woman in my mother's care home whose lovely husband - over 80 - came to visit her every day. He told me he had battled so hard to care for her at home - changing wet beds at least once a night was just part of it - but he wouldn't consider giving up - he'd thought he'd be failing in his duty to her - not until he literally collapsed with exhaustion. He just managed to phone the emergency services, but could not get to the door to let them in, and his wife was not able to understand enough to do it. They had to force an entry.
    Of course he ended up in hospital, and his wife in the (very nice) care home, and he freely admitted that he should never have battled on for so long.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,094
    Kent
    You certainly are not guilty @father ted , but the fact you are going behind your mothers back and viewing homes you know she wouldn't want and neither would you, makes you feel this way.

    Deciding on residential care and viewing care homes is the most distressing task anyone can undertake. No one makes this decision lightly, without much heart searching, but sadly there are times when it has to be.

    You are doing the best you can in researching homes before your mother needs one. This way you can be sure you can be as prepared as possible and not forced into a hasty decision.
     
  8. Emerion

    Emerion Registered User

    Sep 21, 2017
    13
    People with dementia say things that sound ungrateful because they are no longer capable of understanding how much effort goes into looking after them. I know it's hard, but although you are kind to your mum, and you love her, and you wish she wasn't suffering like this, that doesn't mean you need to agree with her opinion of her situation and your place in it. Think about what your mum would have said about someone else in this position when she was well enough to understand the whole picture. I'm sure she would have said that the caring daughter needed to think of her own daughter and herself. Sadly, if you push yourself to a physical or mental breakdown, you won't be thanked for it, either by your mum or by social services. You will just have delayed the inevitable for a short time and at a very high cost to youself and your daughter . Think of the positives that will come from your mum going into a home. You will be more rested and better able to concentrate on your daughter. You will be visiting your mum as a loving daughter and friend, not an exhausted, maybe even resentful carer. They will do a better job of caring for her as her condition worsens simply because there will be more people to shoulder the burden. I know you can't stop feeling guilty, we all struggle with this, but this is a normal reaction to having to do something like this for someone that you love. Of course you couldn't just put her in a home without a moments struggle, because you care. But keep telling yourself that this is the right thing for your mum as well as for you and your daughter, because it is.
     
  9. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    Thank you all for your kind words. Mum fell again last night and because I had fallen down the stairs earlier in the day ( we are like skittles at the moment) and was bruised and sore all over I could not pick her up so my husband did. This morning Mum was very restless in and out of toilet, going through all the plastic carrier bags that lie in her room and said she felt awful. I have got to recognise the difference now between something wrong and the anxiety associated with dementia so I just let her carry on and when sitter arrived she persuaded her to wash and dress and come downstairs.

    Then about 2 hours ago Mum locked the toilet door and then fell whilst in toilet. I could not get in she could not get out and was nearly hysterical. Why she locked the door when it was only 3 of us in I don't know. In desperation called the Fire Brigade who arrived in about 10 minutes and got her out in 5 minutes. They were so reassuring and kind to Mum and me. Offered to send for ambulance for Mum but we declined as enough excitement for one night. I don't think we should replace the broken lock because it could happen again or replace it with one that can be opened from outside.
    At one time these incidents were few and far between but now everyday there seems to be a drama or something that knocks her confidence or causes upset to her and me.
     
  10. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    Oh my goodness Father Ted you are having a tough time at the moment. Glad the problem was resolved quickly and all is as well as it can be now. I had a bit of a problem with dad and locks so took off the lock which was ideal for dad using the toilet and then I took a door wedge in with me each time for me to use so dad couldn't follow me in...soon get used to taking the wedge in even in a hurry! Kept it to hand for me but away from dad otherwise it would have disappeared. As you say incidents start to increase and escalate which brings many of us to the point of thinking care homes. Hopefully you will have a restful night
     
  11. monkeygirl15

    monkeygirl15 Registered User

    Oct 1, 2017
    62
    Hey Father Ted

    It sounds like you are doing an amazing job. We all have our limits. I had a comment from the Dementia Rapid Response Team that said, "We're not here to lock people up in care homes you know." It hurt me so much because I felt that they feel I WANT my mum in a care home. It's killed me to even think of my mum not being in somewhere other than her own home. Of course i don't and of course you don't that. But on the other hand, of course, part of you does, of course, part of me does. Becuase there's a limit to how much we can give. It sounds like you have given a tremendous amount and you have nothing to feel guilty about.

    I hope you can find some way to relax and treat yourself kindly tonight
     
  12. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    478
    Some wise and heartbreaking words on here father Ted, my heart goes out to you.

    You have only one pair of hands.
    Your daughter needs you.

    I too would be distraught having to make the decision, but it does seem as though the time has come, easy for me to say, I do think you will be doing the right thing.

    It could be that your Mum is picking up your distress?
    You can't go on like this.
    With love and support xxx
     
  13. yak55

    yak55 Registered User

    Jun 15, 2015
    614
    I can sympathise and empathise with you fatherted because my mum has started saying lately “I get on your nerves don’t I” my face always shows how I feel that’s me and I can’t help it but when I’m
    Asked the same thing a million times it gets to me.
    I feel guilty thinking and say it but I really dont want to have to shower Mum, get her clothes ready each morning for her, make sure she’s eating and drinking enough, taking her meds, filling the blister box each week, take her everywhere I go at a snails pace, be followed around and crept up
    On, lock the outside doors and them have to scramble for the key when I get a knock, I don’t feel well and I’ve come to bed so Mum is being looked after by my OH.
    I feel wrecked.
    Even if we get day care outside of the home I know Mum is always coming back and the caring begins again.
    I hate it and I’m a cow for saying it out
    Loud I suppose
     
  14. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    It helps to know other people are as miserable as I am.... Caught Mum trying to lock bathroom door again just now so told her not to. Give her bedtime meds. Come downstairs and she starts calling me. Her watch has stopped. So I said we'll sort it in the morning. Oh but I'm lost without knowing the time she said- complete nonsense of course. So I come downstairs again, she starts calling as she is on her fifth toilet trip in an hour to tell me I am low on toilet rolls. When I eventually get to bed I will lie awake waiting for a thud as she falls over or a call as she wakes up and realises her watch has stopped or she has got through the toilet roll I have just put in the bathroom.
     
  15. Marcelle123

    Marcelle123 Registered User

    I have just read this thread and I am awed by the care you have all given to your parents in your own home. I never felt ready to do that, though I did try to keep Mum in her own home near us for as long as possible. (My first responsibility, I felt, was to my marriage and my husband's health, as we have no children and are everything to each other.)

    So I would say, father ted, that you have nothing at all to feel guilty for. You have done your duty and given yourself unselfishly for eight years. But you do need to think of your daughter.

    It is difficult when the time comes for your parent to need a care home. My mother was unhappy and struggling in her own home for at least two years before she moved to a care home. I could never persuade her to consider it. Then she had to go to hospital and it was clear that she couldn't cope any longer with living alone and was a danger to herself. So I had to try and find a care home quickly and sold it to Mum by saying it was a way of getting out of hospital to convalesce.

    Mum's been in the care home a year now - well, actually, at present, she's in hospital with pneumonia, and longing to go 'home' - and by 'home' she generally means her care home, where they have grown fond of her and know their ways.

    In the care home, I visit her about four times a week and have grown fond of the place and the carers myself. Mum has been much happier there than she was at home the last few years. I am just hoping that she can return there soon and doesn't have to go to a nursing home.

    Mum's care home is the only experience I have so it may be that not all provide such good care. But I think you cannot go on like this. I wish you luck finding a good place - and you have no reason at all to feel guilty. You have been and are a very loving and unselfish daughter.
     
  16. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    Father Ted...there were many reasons that meant a care home became necessary for dad.. one of them being him coming into disturb me at night up to 30 times some nights. Obviously no one can sustain their own health without sleeping. With that and your mum now seems at risk of falls that time has definitely arrived ... the risk of falls may not change in a care home as it becomes part of the declining illness...Dad had falls in later stages...but your decision would be the right course to take now
     
  17. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    #17 Oh Knickers, Dec 3, 2017
    Last edited: Dec 3, 2017
    Father Ted,

    I do hope, for your sake, that one of these care homes has a place soon. It would not hurt to call them every 2 - 3 weeks.

    When you start tacking unconventional ways to get downstairs it is really a pretty good indicator that the situation has got too much.

    A major part of why you are feeling as you are is because you are totally worn out. Ann Mac (So bizarre) came to that place before her MiL was moved. She is now a different person.

    Don't feel guilty about your mum going to a care home. You have taken care in choosing. Trust yourself. You mum will probably enjoy the extra company. She will moan to you but the feedback is likely to be very different from the staff.

    Once mother is moved you will be able to look back and see how much you have been doing.
     
  18. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,915
    Suffolk
    There are bathroom locks that can be opened from the outside with a coin. Enough for pwd to feel that they’re safe in bathroom, but easy enough to access if they’re not. Fortunately our bathroom was big enough to take OH at full stretch!
    Later in his illness he did fall more, lots more. Problem was he then couldnt understand instructions ( hopeful thoughts) like, can you stretch your legs out!
     
  19. Grable

    Grable Registered User

    May 19, 2015
    165
    We moved Mum into a care home when she wasn't going to bed at night and couldn't remember how to wash herself. She was cold in her house and couldn't remember how to put the fire on. She wasn't eating and wasn't drinking and was unsteady on her feet. My brother had no room in his house for her - and his wife and daughters didn't get on with her anyway. He wanted me to bring her to my house, where we do have a spare room. However, here she would know nobody and the only people she would have seen would be me and my husband. I have to work to pay the bills, so he would have ended up being her chief carer. That wasn't going to happen.

    So, the only option was to find a care home for her. We visited 10 different places and chose one which was in the village where she had lived for over 50 years. Mum wouldn't go to look at it before the event and didn't ease the burden by saying she would go. Lots of people advised not telling her it was a permanent move, but I couldn't bring myself to deceive her.

    The day Mum went to the care home was one of the hardest I can remember. She was crying because she didn't want to go - although she was aware that something needed to change and she couldn't go on as she was doing, even with a care package in place. Even now, although I know it was the best thing I could have done for her, I feel guilty that I in some way 'let her down'. But I didn't let my husband and the rest of my family down, which would have been in the case if another alternative had been chosen.

    Do you think you could cope if carers were involved? If so, perhaps you could give your mother the choice of a care package or a home? Whatever else is going on, I'd be inclined to try a care home for respite for a couple of weeks anyway - if only until your own bruises subside! With any luck, she might find she likes being there and be willing to stay!!!
     

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