Confused and corncerned.

Discussion in 'I care for a person with dementia' started by Weegnomie, Sep 13, 2019.

  1. Weegnomie

    Weegnomie New member

    Sep 10, 2019
    2
    Hi.
    I’m new and looking for some advice and guidance.
    My mum was diagnosed with Alzheimer’s back in November. To be honest she should of probably spoken to someone earlier than she did but due to a long and hard family history with the disease she was too afraid to seek help.
    She lives with my dad and I am currently there all day every day.
    Other than memory and concentration problems she was doing not bad at first. Then in June one evening she went to the bathroom and when she came back downstairs she no longer knew my dad or her house. It was like someone flicked a switch and everything changed in that moment. At this time she was not being seen by anyone other than the occ therapist and was on no meds. Due to the distress she was under the ot passed along the new info to the consultant psychiatrist and she was given 0.25mg of rispiridone twice a day. They also suggested introducing setraline at 25mg. We understood the antidepressant can take a few weeks to get into your system but her symptoms worsened every day and a couple of weeks in we were given 2mg of diazepam that could been given twice daily if required. I really have to emphasise that her distress levels at this point were extremely difficult to manage. Not wanting to be in her own home and having less time recognising my dad made living conditions very hard. Around 2 weeks ago she started crying and hasn’t stopped. It is possible there is something physically wrong with her also. She was scheduled for a colonoscopy and an ultra sound to check her liver kidneys and ovaries. Due to the recent constant distress she can’t even leave the house never mind go through tests. Her behaviour has become very aggressive also. We now spend our days putting on coats and shoes while she’s trying to leave and then becomes very agitated when she asks us if she will need to come back. This then completes the cycle when she starts throwing things and trying to use her stick against us. At the moment there is almost 3 of us with her during the day and 2 until bedtime. She’s practically stopped eating and drinking and taking her medication the last couple of days has been difficult. She thinks and is afraid of other people (imagined) are in her house and now she’s even thinking the tv is real so we can’t even have it on. The cpn and psychiatrist have said that there must be something causing the distress so we had to find out the reason and in the meantime advised they couldn’t do anything else. Two days of hell later I called the gp who increased the rispiridone after a house call. He explained that even although the severity of things only started around 3 months ago it may just be progressing quickly.
    I’m just wondering how other people deal with quick changing circumstances. And can anyone offer advice on anything else I’ve mentioned. At the moment the family feels at crisis point. We also feel that we are receiving little to no help or advice.
    Sorry for the very long post. I appreciate your time.
     
  2. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,158
    Welcome to the forum, and I'm sorry that you're experiencing such a hard time. My Mum with Alzheimer's had a sudden change in behaviour – agitation, restlessness, anxiety, distress - which resulted in her being given all sorts of different medication, including anti-psychotics. A sudden change in behaviour can indicate an infection but I’m guessing that as this has been going on for so long the GP has ruled out any infections? The cause of my Mum’s severe behaviour change was eventually (months later) found to be pain – as soon as she received adequate pain relief all of the agitation/distress stopped. Is it possible that when your Mum went to the bathroom in June she injured herself due to a fall? Or maybe the medical conditions that she is awaiting the colonscopy for are causing her pain? Have the GP and CPN ruled out pain as a cause? If not, it may be worth raising this with them. There are plenty on here who may be able to provide helpful suggestions and the fact sheet below may also be helpful:

    https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/behaviour-changes
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @Weegnomie
    a warm welcome to DTP
    so sorry to read how your mum is at the moment ... so challenging for your dad and you ... thank goodness you are able to offer them support
    I'm glad medics are involved ... though to me it seems unlikely you will be able to get from your mother what is behing her distress, that's one of the awful symptoms of dementia ... and, of course, once anxious but unable to work out why or what to do about it, your mum becomes more distressed
    it may be that she has moved back in time and either believes she has no husband, and is living with her parents where and when all was safe and secure in her young days, or is looking for her husband of her youth not the much older man who is with her ... so she doesn't recognise him and thinking he is a stranger behaving very familarly towards her, she becomes anxious and afraid, wanting to get away, wanting him to get away
    might your dad leave her be at such times, as much as is safe and possible ...I used to call out to my dad before entering his room eg ' hey dad, it's xxx and I have a coffee and biscuit for you' that way he could recognise my voice and begin to orientate himself to our relationship ... if I was met with negative moods, I beat a hast retreat and tried again later

    your dad and you do need more support ... contact their Local Authority Adult Services and ask for an urgent assessment of your mum's care needs ... be blunt with them about the situation, your mum is a 'vulnerable adult' and her behaviour and aggression are putting her and her husband 'at risk of harm' ... let them know that your dad cannot cope alone and you cannot continue to spend all your time with them ... a care package should be put in place which may help take some of the strain of caring

    keep the medics up to date, not only about your mum but also the effect on your dad who has a right to be safe in his home

    in case your mum is in pain, if it wouldn't interfere with any of her current meds, try a regular dose of paracetomol through the day an before bedtime ... if it helps, you have an indication that there is at least discomfort somewhere ... personally, I wonder whether your mum has had a TIA or a fall that you weren't aware of

    I hope you have LPAs in place, to help you support them both in the future
    https://www.gov.uk/power-of-attorney/make-lasting-power

    and get in touch with Admiral Nurses who are there to support the carer and have a lot of knowledge ... if there isn't a nurse locally, call their helpline
    https://www.dementiauk.org/get-support/find-an-admiral-nurse/

    and keep posting here, folk understand and will come up with suggestions and sympathy
     
  4. Weegnomie

    Weegnomie New member

    Sep 10, 2019
    2
    Thank you for the reply.
    Initially the mental health team and gp thought there must be an infection but she was given a good check over and tested for various things. At this point she was not complaining of any pain. I do now wonder that if it was the beginning of something more sinister at work. We are giving her co codomol now to help with stomach pains. We are also wondering if putting her through those tests are worth it. The gp did raise the point that if there was something serious wrong that treating it might not be worth it.
    With regards to my dad it’s a very odd situation. There has been several various scenarios about him. Showing her photos of the past 50 years she was able to see that he was the same person. At other times she thought there was two of him. Then she thought she hadn’t seen him since they got married. She would say things like “ I can’t believe I’m only finding out I’ve got a husband. I can’t believe you’ve been keeping this from me.” And “it’s a shock to find out you’ve been married and no one would tell you”. She has been distraught because she thinks she’s on her second marriage and that her first husband died. Most of the time now though he seems to just be someone who looks after her and isn’t connected to her. With regards to the house she used to think it was identical to her home but it wasn’t her home. Now she just doesn’t want to be here. I will call social services on Monday again I think to raise the importance of support.
    I called the doctor again this evening as we are totally at a loose end as to help her. Lorazepam has been prescribed to help us cope over the weekend and they are supposed to call Monday morning to see how things are. We may need to discuss some form of respite care at that point.
    Thanks again, I will look at the links to see what might help!
     

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