About Mum

Mum & Archiex

If you are a regular follower of my blog, you will have noticed that I haven’t posted anything about my mum in a very long while. Her little funny ways were worsening and rather than finding myself laughing when I told people about her, I was finding myself more and more concerned by her behaviour. I feel now I am at a crisis point and am at a loss what to do for the best.

When we were moving 300 miles away to Machrihanish last year, we asked mum to come with us. She said yes. Then she changed her mind. Since then I’ve only seen mum a handful of times. My own health has deteriorated over the past year and, quite frankly, I’m not fit enough to make such a long journey on my own. Each time I’ve visited I’ve seen a change in her house. Mum has never been house proud, but her wee cottage is filthy now. I refuse to eat or drink anything in it, nor will I use her toilet. I won’t go into any specifics but trust me; her house is minging. It’s so bad that a cleaner I hired went once and said there was too much for her to do and refused to go back. The last time I visited I left early because of the smell.

Before we left Oldmeldrum I spoke to her doctors and the social work department and arranged for a carer to visit three times a day. They were to prompt her to take her meds and to nuke a ready meal or make a sandwich for her. I even bought her a new microwave. She couldn’t use it, but the carers could and that was all that mattered. But mum refuses to wait for them to come and eats when she wants. The trouble is, there is no one to keep an eye on whether or not she is eating. I do her weekly shopping online and when I ask if she needs this or that, she always tells me she has loads left. We know she isn’t taking her meds properly. The carers are legally only allowed to prompt her to take her pills, not to dispense them to her, so they put what she has to take in an eggcup and tell her they are there. They have come back in the evening to find the eggcup full and mum insisting she took them. Even having all her meds delivered in a dosette box makes no difference. And don’t get me started on how she can’t use her puffers properly or co-ordinate using a stick because she is so unsteady on her feet.

Mum often eats her evening meal at 3:00 in the afternoon. It’s not unusual for her to call me at 5:30pm to tell me she’s away to her bed. She tells me the TV in her room isn’t working – it never has. It’s her old living room TV she wanted to keep incase the new TV broke down. She has forgotten how to change the channel on her TV so goes to bed as soon as something comes on she doesn’t want to watch. I have just discovered that several of her lightbulbs had gone. She told no one so probably went to bed sometimes because it was dark. And the batteries on her TV remote were dead. Each week I’d ask her if she needed anything different from what I normally buy. Each week she’s say no.

Then there’s the phone calls. She’s lonely. The other day she rang me eight times. She’s called me at 1:00am before. Of course, when the phone goes at that time you expect the worst. let’s just say I didn’t get much sleep that night.

She has an infection on the outside of her ear. The doctor called me to tell me she had to take antibiotics. I expressed my concern that she would be unable to cope with taking them in the manner prescribed. I asked that she be taken into respite care to make sure she got the drugs she needed when she needed them so she would get better. The doctors and social care staff instead decided that getting a carer to come an extra time to prompt her to take the pill would be enough. I told them it wouldn’t, I told them she would get confused and not be able to do it. But, you know, they know best. This afternoon I got a call from the warden to tell me that when the carer came this morning, mum had taken two antibiotics too many. I’m not at all smug that I was right. I am sad and sickened and worried.

I want her to go into a care home now. I can’t look after her and it’s obvious that she can’t look after herself. Unless, that is, you are on her care team. Mum wants to keep her independence and refuses to go into a care home and that’s the end of it. She has no independence. If I have a bad flare up and ever find myself unable to organise her Tesco delivery, she’s have no shopping. She can’t take her meds properly – the warden today admitted that it might be better to organise the paperwork for the carers to take charge of her meds completely, but that “Nan probably wouldn’t want that because she thinks she can do it herself.” She doesn’t eat properly, she doesn’t eat at reasonable times, she can’t keep her home clean. She has no idea what year it is, what month it is. This year, for the first time ever in my life, mum didn’t call to sing Happy Birthday to me. She forgot all about it. If we speak on the phone in the morning she has forgotten by the afternoon and has no idea what she had for lunch – or whether or not she had anything at all. She lies to me all the time. She gets confused and panics and lies. But the doctors refuse to sign her off as being incapable of making her own decisions so I can’t invoke Power of Attorney.

I am stressed out. Tense doesn’t begin to describe it. I have been looking after her since I was 21. I’m 53 now and still having to look after her as best as I can for 300 miles away. All my adult life she has done nothing, gone nowhere, made no decisions without me. She has suffocated me by her version of “love” and I have had to be her parent. I have never been able to rely on her or to take my problems to her. No matter how ill I am or how upset someone has made me, I’ve had to keep it inside so as not to worry her because she can’t cope with being an adult. Before dad died he told me that I’d have to chivvy her along a bit when he was gone because he knew she wouldn’t cope. Now, as selfish as this sounds, I’ve had enough. My own health is suffering. My husband is understandably concerned at the effect she has on me. For my sake I need to step back and just let events roll on as they will. But I don’t know if I can. I don’t know if I can live with the thought that she is up there, feeling lonely and unloved because I withdraw and try to take some time to concentrate on my own health. I’m damned if I do and damned if I don’t.

There is no answer to this situation. It’s just shite and I see no way out of it. I’m writing this in the hope that someone who reads may have gone through a similar experience and might be able to offer advice. But right now, I am too tired, too done to be able to do much about it anyway.

Sorry to have gone on. Thanks you for reading.

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16 Comments

  1. Margot Kinberg
    Jun 13, 2015

    I’m so, so sorry to hear you’re having to deal with this, Nettie. It’s awful! I can only imagine how close to the end you’re feeling. I wish I could offer sane and useful advice. I know the care home option has its own problems, but at the least, you’d know she was getting proper care if you pick the right one. I know – not much help at all, am I? But we all hurt for you. I hope you find your way through this.

    • nettie
      Jun 13, 2015

      Until she agrees to go in or is deemed to be incapable of making her own decisions, my hands are tied. I hate to think about what has to happen before they will see that she isn’t coping. xxx

  2. Lisa Shambrook
    Jun 13, 2015

    My own heart aches reading this…my mum is the same. Thankfully, she has my dad with her, but all your mum’s symptoms are mine’s too. Refusing meds, going to bed and waking whenever she wants, dad sometimes can’t convince her to go back to bed at 3am… I also have the same kind of relationship with her as you do. She’s not been a mother since I was very young. Now, I’m the only sibling close by and with dad hitting eighty this week and failing health too, the responsibility falls more on me.
    You’re not selfish, Nettie, don’t ever think that. Just in an untenable situation, and one that the government/social care/ finances/NHS – you name it – doesn’t help with. I wish, I so wish, I had some answers for you, but I have the same fears, the same nagging nausea and desire to escape, as you do… You have every scrap of empathy I have, and I hope someone can comment with viable help x

    • nettie
      Jun 13, 2015

      Thank you, Lisa. My heart goes out to you too xxx

  3. Jackie Aitchison
    Jun 13, 2015

    Net tie, you know I went through something like this, but I got the Power of Attorney working very quickly and my mum was not as confused as you mum sounds. All in the hands of other people, one fight after another. As for her meds they were locked away, and the carers would give the drugs to her with a glass of water . she was good at taking them, but the carer had to write in the notes if there was any problem.

    It is exhausting, and as you have been caring for her for so long……… Your situation sounds hellish, and I wish I had advice but I can offer none. I do feel though you should not feel guilt, you have done so much for your mum, and you have your isn family and your own health to take care of now. i would suggest trying to get her into a good home, where she will be looked after, meds and meals seen to, but that might not be easy. So very very difficult but never forget YOU and your needs, your health and how this affects your husband

    • nettie
      Jun 13, 2015

      Ah, thank you, sweetheart. I just feel so responsible x

      • Jackie Aitchison
        Jun 14, 2015

        What annoys me so much on your behalf is the Power of Attorney, my mum was diagnosed with Dementia or anything, there was no damage to her brain, the felt it was just a bad reaction to a severe infection, but I got that agreed to ASAP and it made such a difference as they could make no decision without my agreement, and I had to be told everything.i had a short sharp introduction as it just seemed to hit us almost overnight and within 18 months mum unexpectedly died, so I did not have years invested in her care, so very different, but I do think, for what it is worth, that your priorities must shift now, it is clear, from what you say your mum is very much worse and not remembering your birthday as an example, if you could just get her into a home, not what you would have thought you would have wanted, but she would be cared for, fed, meds given and so on, you would know she was safe – which is the main thing now.
        Your own family and your health must come first now as situations have altered. You want to be able to enjoy your life at this time, with George and being part of Claire’s life and you can’t do it all to the same level. It is hard, heartbreaking and never ever going to be easy whatever you decide, but please remember your own health.

        • nettie
          Jun 14, 2015

          As I said to Anne, I have POA set up but can’t invoke it until the docs say she is no longer capable of making decisions in her own best interest. She’s just called and I didn’t answer it. I feel like such a shit.

  4. Anne Mackle
    Jun 14, 2015

    oh Nettie this is heartbreaking. We had much the same situation with my mother in law. I went shopping for her,she complained endlessly,I sent tesco shopping online,she complained etc.. She ending up with a kind of meals on wheels service the council provide although she had to pay for it. Maybe I’m asking a silly question but does she have a social worker? My MIL had carers and you’re right in that they can only do certain things but I know they do have carers for people with mental health issues who go in and make sure meds are taken. It is very hard to organize things from where you are but you should put it in writing to a GP and social worker how you feel and you are scared something serious will happen to her if they don’t intervene. My MIL refused to go to a care home but we went to view them anyway. I always said to her she would have an accident and end up in long term hospital care and she had a stroke in the middle of the night she survived but had to go into care where she was looked after better and was there for two years. It affected my health too I was exhausted and I think I was also depressed with all her negativity and refusing to listen to any reasoning. If you shout enough you will be heard but I’m sorry you have to go through this and try not to be too hard on yourself you have cared for a very long time. It is her GP and social work dept who are now letting her down.
    Will your mum not agree to you having power of attorney?that mess are taken.

    • nettie
      Jun 14, 2015

      Mum has a care team in place and a care team manager. I have POA but cannot invoke it until the doctor says she is incapable of making her own decisions in her best interests. Until then, my hands are tied. They keeps saying they want to have a face to face with me but fail to understand that I’m not well enough to drive up there on my own. They also tell me that a Skype conference isn’t possible. I plan on writing to everyone involved to tell them that should anything happen to mum as a result of her staying at home, I will hold them responsible. I am sorry you had to go through this too, Anne. Look after yourself xxx

  5. Robin Romeo
    Jun 14, 2015

    This is really a heartbreaking post to read and so courageous of you to write.

    According to a FaceBook quiz, you are my soulmate. I didn’t post it because I felt Tomromeo might feel slighted, but since FaceBook said it, it must be true. Accordingly, I felt it my responsibility to respond to your courageous and heartbreaking post about your Mum. I’ve never had to deal with this situation, but principles rise above the details and these are the ones I live by:
    1. Sometimes you have to listen to someone’s heart and ignore their words. If you feel that your Mum really wants to live and participate in her own life but is somehow thwarted by bad medicine or bad care, I think it would be your responsibility to fight for her. Fighting for a just cause doesn’t deplete you; it energizes you.
    2. You have to put on your own oxygen mask before you can help anyone else with theirs.
    3. You can’t want something for someone more than that someone wants it. If you feel that your Mum really doesn’t want to eat, watch TV, read or live any kind of life at all, I think it would be your responsibility to let go. It will hurt, but you’ll have to grieve for her at some point -doing it now is kinder to yourself and irrelevant to your Mum.

    • nettie
      Jun 14, 2015

      Much love, soulmate xxx

  6. Bunny (holyxuxa)
    Jun 15, 2015

    I’m so sorry you’re going through this. My Dad had dementia but didn’t fight against going into a home. I don’t understand those doctors and why they won’t see what’s happening. Can the people who bring her pills tell the doctors what’s going on? Is there any one who can help you make the trip? I wish I could help. I had to care for my Mom for many years, although she did not have dementia, but it does wear on you. I hope you find a way to deal with this. xoxo

    • nettie
      Jun 15, 2015

      They all know what’s going on but mum wants to stay where she is so that’s that.I think they see many worse cases so don’t think mum is too bad whereas she’s my mother and I am concerned for her. Thanks for reading and I’m sorry you had to go through it too xxx

  7. Angela Barton
    Jun 15, 2015

    I can certainly see why you’re stressed, Annette. You’ve written a heartfelt and brave post which conveys the impossible situation many carers face with their ageing parents. You’ve written such a strong and honest message that I don’t feel it should be left on your blog. Can you send it to your local paper? Your mum’s local paper? Your GP? Your mum’s GP. Surely having read it and with a greater understanding, the decision-makers will see that you need POA and that your mum needs extra care. I can’t see what else you could have done…and for so many years.
    So sorry I can’t offer any practical help, but I’ve read, understood, send my love and pray that soon something happens to improve your mum’s care and your health.
    Your online friend, Ange xxx

    • nettie
      Jun 15, 2015

      Your love is appreciated and your suggestions might be a goer – thank you xxx

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