How do others cope?

Discussion in 'Middle - later stages of dementia' started by GiCo, Nov 9, 2015.

  1. GiCo

    GiCo Registered User

    Jun 7, 2013

    Mum is in a care home, in the very later stages of Alzheimers. She is 85 and physically quite well considering her age. She cannot communicate verbally but talks constantly repeating phrases like "in this place" for hours on end, even in her sleep. She can let us know how she is feeling by her facial expression and body language, but what she is communicating is the most profound distress, fear and anxiety.

    She has been on Risperidone but it did not agree with her and she has recently changed to Quetiapine. Her dosage has been increased but she is still very distressed. She had a fall at the weekend and broke her arm. She and I spent 12 hours in A&E, waiting 4 hours to even be seen by a doctor. It was the most terrifying, awful experience for her. She was not even offered pain relief despite my requests. Eventually she only got morphine when the doctor realised that she could not be x-rayed without others words she got pain relief to suit the medical team, not her clear and obvious need of it. She was desperately afraid of everyone who came near her.

    I can calm her down. She still gets comfort from my presence and physical contact with me, She does not recognise anyone now, but she knows I am a friend, someone she is not scared of. She hallucinates frequently, seeing strangers who want to hurt or or who are laughing at her. If we up her dose of the anti-psychotic anymore she becomes rigid. Her muscles seize up. So we are at the maximum dose.

    I am worried that I am getting to the stage where I cannot cope with watching this awful disease anymore. I am off work today as I thought yesterday that I was having a breakdown. I can do a little to help her distress so I have to keep going but I feel I am close to the end of what I can do. I have no other siblings in this country. My brother lives in Dubai. Mum is scared of my husband and my two sons as they are big, burly men she does not recognise so they cannot help with visiting.

    I feel very alone and desperate.
  2. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    Sorry to hear what you going through, even worse it seems alone too. Why didn't someone from the care home go with you to hospital, surely they could have done.

    Hospital A and Es are very unfriendly places, and are usually staffed by junior members of medical team who have hardly no experience of older people let alone dementia. I would insist the care home get a doctor to check her over and ask him to prescribe her pain killers as she must be in pain with her arm bless her.

    You have come to the right place to ask for advice and support as lots of people are in this awful situation feeling at the end of the rope and understand. May I suggest you book a GP appointment for you and get things off your chest and ask for a bit of support from him, maybe anti depressants to help you to cope with everything as we all need help at sometime.

    Are there any other female relatives you can ask to accompany you when you visit, aunties cousins etc, just to see if she would be different towards them. My parents only feel happy when I'm about but I know how draining it is. It maybe that she only trusts you as its always been you sorting her out. Complimentary to you in a way but also blooming hard. Your male members of the family can help you by doing things about the house whilst you are visiting to help your. Workload, and then lend you their ears after the visit.

    Paracetamol is suppose to help with anxiety, agitation and sleep and can be taken with most other drugs, so even this may help your mum but ask doctor first.

    Take care of you first, reduce the visits for a while if you have to because if you feel better then the visits will be better for both of you.
  3. GiCo

    GiCo Registered User

    Jun 7, 2013

    Thanks for your support Kassy. I do the same things. Lots of crying in the car at a local beauty spot on the way home from Mum's. My family are amazingly supportive and are obviously quite worried about me at present. But I feel so guilty being a flake and making this about me when Mum is going through a hideous, hellish nightmare. I think I might speak to my GP. I'm such a private person that talking therapies would be hard for me but I'm needing to do something. My work colleagues don't get it but that's my fault because I don't talk about Mum at work. I need a place of sanity where I can try to switch off and focus on something else.

    I'm afraid there are no relatives in this country, Mrs Busy. They are all overseas apart from my husband and sons who do everything they can to support me. But thanks for your kind thoughts. I know I'm not the only one going through this but it sometimes feels like it.
  4. hvml

    hvml Registered User

    Oct 10, 2015
    North Cornwall
    It's true that posting on here really does help. I have my brother and sister in law, but they don't do emotional support. Nor does my Partner. The heartfelt, experience led, gems of wisdom that I have read, along with humour and grit, are making a real difference to how I think, feel and behave in the face of this most distressing situation. I too am prone to breakdowns, but I feel less panicky since coming on here. I hope it helps you too in a similar way. Xx
  5. GiCo

    GiCo Registered User

    Jun 7, 2013

    I spent most of the day with Mum yesterday as she was in such a state. She can't understand the pain, the sling, the immobility, the loss of her very limited independence (she was still walking around before this). She was so agitated and distressed that even the staff were in tears. It produced more words with meaning than she has managed in weeks. Unfortunately those words with meaning were: "I'm frightened, I'm frightened" repeated over and over and "I want to die" again repeated over and over.

    Yet more meds, so hopefully today she will be less distressed. I was able to hold it together in front of her but every time someone was nice to me and sympathetic about the awfulness of what she is going through I just dissolved into a puddle. When I got home a large malt whisky was in my hand within seconds. Cream cakes for some, whisky for me.
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #6 Shedrech, Nov 10, 2015
    Last edited: Nov 10, 2015
    Morning GiCo
    So sorry things are just feeling so grim for you.
    You've had some lovely replies, I almost didn't add mine but this touched me:
    You are not being a flake; you are human and sensible enough to realise that you are close to the edge, so letting off steam and talking to your GP may ensure that you don't go over it.
    Your mum's situation is so sad but is a separate issue. I admire how much you have done to care for her. What a wonderful family you have supporting you.
    The fact is, however, if you don't give yourself a break you will not be able to continue your caring, which I'm guessing would cause you much more distress.
    Maybe have a visit break at least once a week, maybe even every other day. Have a good chat with the staff so they understand how you are - they have probably already seen for themselves. Then call once on the day you don't visit, to check how your mum is.
    You have been so seeringly honest in admitting to and writing of your feelings. Please now be gentle with yourself - you really do matter as much as anyone else, especially to your family.

    PS This post crossed with your most recent - so apologies if what I've written is inappropriate.
    My heart goes out to you and your mum.
  7. GiCo

    GiCo Registered User

    Jun 7, 2013

    Don't apologise. Your kind comments have helped a lot. I need to visit as much as I can at the moment until she is (hopefully) over this crisis. I hate this disease with every fibre of my being. The irony is that my beloved husband had persuaded me to take a break and not go in last weekend. And then the phone rang....

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