1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    46
    I hit a crisis yesterday.

    Background:
    Mum was diagnosed with Alzheimers Jan 2013 Dad died June 2013 and I have been Mums main carer since then. No other family (sister is in Australia). Mum went into hospital on 31st Dec 2018 as she was delirious and having halucinations. She wasn't sleeping up all night and had confused day with night. It took 2.5 months for docs to get her stable and moved to nursing care.

    Shes been told that she is convalescing after her long hospital stay (2.5 months in assessment).

    She's always asked about when she can go home but it is getting more frequent . (I am in the process of selling the family home of 60 years as we need the funds to pay for her home which is £1300 per week (self-funding).

    I visit her Monday Wednesday and Friday for an hour each day and at the weekends have been taking her out in the afternoons - she is very active and mobile.

    When she gets back to the home she gets anxious and asks where I am taking her but has always gone back.

    Yesterday was different. When we were in the car going back to home she asked where her house key was and could I take her to her own house right now! She did not want to go anywhere else. She said if she coudl not go home she just wanted to die.

    I tried to soothe her and told her she was not going to be there forever but she turned on me and said that how could I do this to her and if my father knew what I was up to he would be furious with me. She was crying and shaking.

    I felt so sorry for her to be so upset. It hurt so bad at the time but I know these outbursts are part of the illness and I need to learn not to take them personally.

    The advise I need is this - is taking her out the wrong thing to do now? She always liked to go for lunch and visit her ice cream place on the way home....we've had lunch on Saturdays together for years and I was trying to keep her in touch with her life before going into long term care....she keeps asking when she's going out with me and I tell her as soon as its the weekend we can go.

    Maybe taking her out and coming back is now too distressing or should I just carry on and accept she will be upset going back to the home?

    I'm also going o call the CPN tomorrow to see what she thinks.

    Thanks for any input.
     
  2. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    I would probably not take her out any more, as it seems to be a prompt for her to remember her 'old life' and want to return to it. She needs to get used to her new routine and surroundings. You could try taking her out once again and see what happens, and decide from there.

    My mother has been in a care home for over a year and before that she would go out every day with a carer to the shops or the park. I had intended to take her out when she moved to the CH but she had a fall two weeks after she arrived so wasn't able to go out for several weeks, but which time she was settled and didn't show any interest in going out. The CH do take residents on organised outings so she can still get out sometimes.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hi @Jintyf
    a good idea to chat with the CPN, and also the staff in her home who will know how your mother settles after your trips out and how she is generally day to day ... I found that if I asked straight questions and made it clear that I wanted an honest answer, not simply to be reassured, the staff in dad's home told me exactly how he was and I followed their advice
    it's tough, I know, reaching that moment when visits out are not appropriare any more ... I took in treats for dad and we sat in the garden when we could, not the same for me but he was more settled that way
    maybe you could have lunch in the home, I did that too at times, telling them beforehand and offering a contribution to the costs
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Im wondering which home she wants to go to. If you get her to describe it you might find that it is not the family home, but her childhood home.

    Many people with dementia say they "want to go home", but what they are actually asking is to go back to a time/place where they felt safe. Im guessing that going out is now beginning to cause her anxiety. She may not remember where she is and where she is going. You could try taking her out for a much shorter time - just to the ice cream place, maybe. I had to take mum out for shorter and shorter periods. The last place we could go was to a cafe literally just up the road, for coffee and cake and we would be back within half an hour. Eventually this was too long too and I couldnt take her out.
     
  5. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    46
    Thanks Sirena. It's still early days I suppose for Mum and I think taking her out again to see what happens is a good idea.
     
  6. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    46
    Thanks - taking her out for a shorter time is a good idea and not back to anywhere she is familiar with may also help.
     
  7. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    46
    Thanks for your support. Thankfully Mums nursing home is happy for me to eat with Mum any time I want to as long as I give them a days notice. And there's no charge! Agree, best to take advice from the experts. CPN had suggested I give staff a tablet or some such device with a recording of me speaking to MUm which might help settle her when I'm not there....any thoughts on how this might work?
     

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