Feeling so sad, have to take this decision.....

Discussion in 'I care for a person with dementia' started by alijoy, Jan 6, 2016.

  1. alijoy

    alijoy Registered User

    Jan 6, 2016
    After caring for Mum at home and giving up my work (ironically, a nurse caring for people with dementia), I had to place her in emergency respite on the Saturday before Christmas.

    This was because she had not slept at all for just over 2 weeks. For a few months, she had been getting up 5-6 times a night, I would take her to the loo, and she would go back to bed. I managed that, though I was very, very tired,

    She started to fall, so I installed a pressure mat alarm.

    Refused to settle in a hospital bed downstairs ( have a downstairs loo and there was a commode too ).

    I could not count how often she got up in those last few weeks, but my son sat up for her on the night before she went to respite and it was 16 times in 10 hours.

    I agreed to pay for a 2 week stay as Social Services would not come and assess her till well after Xmas ( but would not give any timescale and still not heard from them yet and they don't know I placed her privately) despite several requests from GP and DN for urgent action. Extended this to 4 weeks which would have taken her to 16 th Jan.

    She is now on Mirtazapine 30 mg. having her dose increased gradually. However, Since being at the home her sleep has not improved one iota. I checked her written hourly reports with the manager yesterday. Maybe once a week, she will sleep in bed for 5-6 hours. That's it. Rest of time, they mainly keep her in a recliner in the lounge, constantly placing her back as she fidgets to get out.....tried all kinds to distract her, twiddle mist, button blankets, photos etc. Nothing works. Nothing.

    I've now had to take the decision to place her there permanently. I just cannot cope with no sleep whatsoever, never mind the all day constant vigilance required, as she tried to stand alone and would fall. There was just no let up at all.

    My Dad died 10 years ago after vascular dementia, so coping with all this has brought back so many painful memories of his struggle too, that I've worked hard to suppress and only remember him in his good times.

    So much going on in my head, Gulit deep, deep sadness, grief, and a little bit of relief that I don't have to feel that sense of panic of how I will get through it if she comes home.....

    I told the Home I will give them a final decision tomorrow. I know what it will have to be.

    Christ, life is hard.
  2. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Oh my goodness. This is awful for you alijoy. It sounds as if you have made a good decision, though. I do hope that SS will give you the help you need. I'm sure someone else will be along soon to give you some words of comfort and advice. Thinking of you. xx
  3. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Oh my goodness alijoy , what an awful time for you but you know you have done the safest and kindest thing for your mum . I am a nurse too , looking after my mum. It is so hard and I do think at times , if I can look after strangers I can look after my mum. But the reality is , sometimes we can't . I hope your mum settles soon into her new home , and you get some much needed rest . I wish you and your mum well as you cope with this chapter in the 'dementia journey' that we never want to go on . Keep telling yourself you are doing the right thing . Best wishes . Lou x
  4. pmcgroarty

    pmcgroarty Registered User

    Sep 18, 2015
    we are approaching this stage with my mother , I hope I can find the strength like you to make the right choice but it is the last choice in the world i want to make ,my heart goes out to you

    much love

  5. Quilty

    Quilty Registered User

    Aug 28, 2014
    No one person can actively care 24hrs a day. Its just not safe for your mum. It is not safe for your health. If you believe she is getting good care then you are doing the best thing. You can be a daughter again and enjoy your time being with her. Its hard but it can work. My mum is so much happier and healthier in her care home. Its been 9 months now. This helps with the guilt. Its not your fault, its the dementia. Big hugs. Love quilty
  6. daisydi

    daisydi Registered User

    Feb 25, 2015
    I feel your pain

    I also had to do this this time last year. It was so painful and I cried for weeks and weeks. I had also given up my career in the NHS to care for my mum so I was completely lost. I do know now that it was the right decision both for my mum and me. She is much better cared for now. I was doing my best but I couldnt keep tabs on her 24 hours a day and it was so very stressful looking back. She is happy in her care home and I see her every other day. We do not take the decision lightly but in the end we have to keep our mums safe. You are doing the right thing and no need to feel guilty. You have her best interests at heart.
  7. alijoy

    alijoy Registered User

    Jan 6, 2016
    Thank you all. My head knows it's the only possible choice I can make, it's just my heart......but the one good thing is that she has not seemed at all distressed by being there.

    The Mirtazapine, whilst not helping the sleep or constant restlessness, has helped give her some better moments in her days. She recognises me and other members of the family now, not by name, but by body language, which had disappeared with the constant agitation before. She also smiles and laughs at times, which again I'd not seen at all for a couple of months, she was just miserable, and her words are clearer, though the stories are still mostly nonsense, especially if you don't know her as well as I do!

    I can't believe how fast she deteriorated in 4 months. I know it goes like this sometimes, but it's still a shock. And using my "nursey" head, I kept trying to find a pattern, a routine to try and make sense of something that makes no sense at all. Every day, over a couple of months another skill would disappear, until we got to the never sleeping stage. The GP and DN were shocked too at the rapidity.

    I've had a huge amount on my plate the last 18 months....they've been the most difficult of my life. My eldest son had a psychotic breakdown Aug 2014, his second baby was born Sep 2014 so I had to be main support for Mummy. They were living with me at the time and her parents are not involved at all.

    He is still under treatment, though much better, I slipped 2 discs in my neck in Dec 2014, and was laid up for several months and it became clearer how poorly Mum was becoming. In fact, I think me being forced out of action actually impacted her a lot as I couldn't do for her what I've done for many, many years and it threw her routine out completely. My sons took up the slack but it still wasn't the same for her as I wasn't popping in and out all the time, taking her shopping weekly etc.

    I feel shell shocked a bit I think, and this put the icing on it.

    I do feel happy with the home she is in. They seem kind and caring, which is the most important bit, and their records are excellent. Food is good and plentiful. I'm really grateful that I feel at ease with that side of it.

    It really helps to talk to others who " get" it!
  8. alijoy

    alijoy Registered User

    Jan 6, 2016
    I'm going to take a few weeks to decide which place of work I'm going to go back to. It will still be in dementia care, just not sure what hours, employer etc I want.

    My old job said they would take me back whenever I felt ready to return so that's something to look at too.

    Can't get my head round getting my life back to some sort of "normal" yet. I visit daily or every other day too, but often just stay 30 mins as that's enough to reassure her.

    It's kind of weird going from full on, 24/7 care to being a single 55 year old Nanny again!
  9. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    Dear alijoy, I had to answer your post, this could be me! My mam is now 4 months in a care home, where she is fine, and I am still adjusting, not sure I want to go back to my old job and still shattered. It's a terrible illness, and no way could I go on and I now realise i didn't have a nights sleep in months. I went on too long not wanting to let my mam go. But, she is doing really well! Still not sleeping but safe and warm at night, Best wishes to you
  10. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Alijoy, I can so relate to your situation, as I'm the same age as you and I, too, am looking to go back into the workforce, having recently got some care arrangements in place for my parents-in-law. It is wonderful to hear that your old employers will welcome you back, though - that must give your confidence a boost! I do feel it's important to re-claim your life back somehow, even if it is not in exactly the same job or level of responsibility that you had before. I wonder, have you talked to your old employers? Would they be prepared to help you find your way back to work with them - assuming that is what you want, of course? Just a thought. xx
  11. alijoy

    alijoy Registered User

    Jan 6, 2016
    Sincere thank you

    I wanted to update: Mum seems as settled as she will ever be, not distressed when we leave her. Still no sleep pattern.

    I still feel somewhat in limbo and am just allowing myself time to adjust to this new "normal". I don't feel work ready yet, as not sure how I will cope emotionally, but have set myself a deadline of end February as money will dictate that!

    Having said that, I returned to work after Dads death from dementia, on my first weekend in charge of a nursing home with 2 people on end of life care, syringe drivers etc and they had a peaceful death. From dreading it, I felt accomplished and that I could do what I was supposed to. Like stepping over a big hurdle.

    It's such a profound change for me after being Mum (and Dad's) main carer for 20 + years, alongside work and taking care of the family and grandchildren.

    I'll get there, and there is still a journey to travel with Mum. I just need to forgive myself for not being able to do this single handed.
  12. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Alijoy of course you couldn't do it all single handed. Bet you weren't so hard on any of the relatives of those you have looked after in care homes where you worked in the past.

    So glad to read that your mum seems fairly settled and is not distressed. Your experience will ensure that she is getting the best possible care.

    When you do feel up to going back to work maybe you could start part-time so that you don't overdo it? Sounds like you still have a lot going on in your family life.

    When you return to work in dementia care, you will be improving the lives of the dozens of residents of that care home. Not to mention the spouses and relatives who visit them and worry about whether they could have done more to manage at home.

    Hope you enjoy plenty of time with your little grandchild before going back to work.

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