Lewy body dementia. I’m afraid of dad.

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

  1. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Hi.I haven’t been on TP for a while as Dad had settled down in his care home and was happy. He has now started the aggression and angry stage and I’m getting phone calls from the home 2 or 3 times a week on top of my normal visits(I actually visit 3 times a week as I only live 10 minutes away)to go and calm him down.The consultant has upped his quetipine and his rivastigmine patches but in the last 2 days he has been really difficult to calm down.I visited Friday morning as usual and he was very cross so I stayed until lunch.I had another phone call in the afternoon so went round again. Then yesterday I had another phone call.He had been in a ladies room twice in the night shouting and then in the afternoon he had grabbed another lady by the arms and shook her quite hard.This has been more upsetting as he has been very good friends with this lady for 10 years,going on holidays etc until she was diagnosed with Vascular dementia. About 6 weeks ago he had shingles on his face,which I presume has bought on this downturn .It has left him with a palsy and I’m an meant to take him to the hospital tomorrow to have his eye looked at. I am actually really worried about taking him.How can I be afraid of my own dad? He is so volatile at the moment and he’s a large strong man ,not easy to distract when he’s angry.Not sure what to do but I will talk to the carehome when I visit later and see what they think.I must admit I’m wondering if this carehome is now suitable for him.Thanks for reading and any advice would be really helpful.
     
  2. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,293
    You've got a lot going on here so best to take it in stages.

    With regards to the hospital appointment tomorrow, how is your Dad going to be compliant with eye tests etc in his current volatile state? You can't be expected to take him there yourself like this, or place yourself and the hospital staff at risk by doing so, so in your position I'd cancel it. Explain to the hospital that he is not well enough to attend and ask for another appointment date. The appointment can wait - please don't put yourself at risk unnecessarily.

    Next contact the consultant for an urgent review of your Dad's medication.

    As to whether the home is still suitable for your Dad, I'd suggest a frank conversation with the home manager. The staff shouldn't be calling you all the home to calm your Dad down but if they are unable to cope with him then this needs to be discussed. The manager may agree to keep your Dad there for a short time whilst his meds are reviewed - in which case the staff should be dealing with your Dad, not calling you - but they may also decide that they can no longer meet his needs and he will have to move. They need to consider the safety of staff and other residents as well as your Dad's needs so a discussion with the manager will clarify the position. It's a difficult position but I hope that steps can be put in place to help your Dad and also reduce the burden which is being placed on you by the care staff.
     
  3. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Thank you for reading and replying Louise7.I cared for dad a long time before he went into the carehome and at the moment he still remembers me which is why they call me but as my sister said he is in there for them to care for him.The carer yesterday said “we only have 4 people in today “ so haven’t got the staff! I’m really disappointed with them as when we were looking for care-homes I asked what sort of behaviour they could deal with and was told they would manage any behaviour On Friday they wanted to sedate him but dr said no..I will cancel the hospital appointment and arrange a meeting with the manager. Dads consultant is really good so will ring her tomorrow.Thanks again for your advice .I really appreciate it.
     
  4. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,293
    #4 Louise7, Oct 13, 2019
    Last edited: Oct 13, 2019
    What sort of home is it - a residential care home? Unfortunately it seems that it's not unusual for homes to say that they will accept any behaviour then decide at a later date, when the behaviour gets worse, that they can't manage. It's not fair on residents and families to put them through the upheaval of a move, but I think that wanting to sedate a resident rather than manage their behaviour is a definite indication that this is not the right home for your Dad. When looking elsewhere take a look at how the other residents are behaving. If they are at a similar stage to your Dad or worse then that will be an indication that they will be able to manage his behaviour. My Mum is in a nursing home which has different floors - one floor for residents with no behavioural problems, another floor for those with difficult/challenging behaviour, and also a palliative care floor so we will hopefully not need to move her again. I hope you can find somewhere suitable where your Dad will be able to settle and remain long term.
     
  5. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Dad is partly funded by the LA so we haven’t got a lot of choice and had to go with this local one .It had a lot going on, plenty of activities , residents happy.I have got to know the carers and residents and I have enjoyed going there.But this last 3 weeks no activities.Dad is in such a bad mood I don’t think he would join in anyway.All he wants is a lady friend .He is obsessed but Of course any of the ladies are in different stages of dementia and they don’t understand his advances. .My son wanted to pop in to see his grandad this morning but wanted me to go with him. Dad swore and started on at me so I walked out and left my son with him. I’ve cancelled the hospital appointment tomorrow . I would rather spend the day sorting Dad’s care with the manager. Your mums care home sounds ideal.I think I will have to look further afield for a lovely home like that but the thought of moving him is daunting. Thanks again Louise .
     
  6. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,293
    If your Dad's partly funded by the LA then they will be involved in any decision to move him so dependant on what the home manager says they may need to be contacted. As you've pointed out though, the difficulty with not being self-funded is that choice of homes is very limited. The home Mum is in now was the third home she was moved to within a year, due to the two previous homes she was placed in by the LA being unsuitable/unsafe. Unfortunately our experience was that it seemed to be a case of just putting people into homes that have places rather than conducting a proper assessment of whether the home is suitable first, but fingers crossed that things go better for your Dad.
     
  7. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    I’ve just had a meeting with the care home manager and he was really sympathetic.He agreed that they shouldn’t keep ringing me.He going to ring Dad’s consultant and see if she has any ideas on medication and he is ringing the LA to see if they will give1-1 care until dad’s medication can be sorted out. I won’t hold my breath on that but it’s a nice thought , if it happens.Rather than the hospital visit today,Dad’s side by side friend offered to take him singing as he really enjoys music.Hes an absolute godsend and so hopefully a happy dad later.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Shingles in the eye is actually unbelievably painful for quite a while afterwards. Is he getting proper pain management? Because if he is still in pain this could cause the behaviour problems.

    When you say he has a palsy, is he getting double vision? The other problems you can get are ulcers on the cornea and problems with the iris. If he was just going to the hospital to check whether he has anything like that, you could always have a word with the care home and see if they have an optician who will test people at the care home. The optician wont be able to give any treatment, but will be able to look to see if there are problems and how urgent they are.
     
  9. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Hi Canary.Thank for replying ,especially when you have so much going on at the moment. It seems to be that the bottom eyelid nerves have been damaged and also his mouth is like he’s had a stroke.The eye continuously runs and he said it’s sore.When he’s not angry, he’s quite good at telling me what’s wrong and hasn’t said about double vision.I didn’t know about the other problems that can occur. It broke me on Saturday when in a more lucid moment he said”I’m getting worse aren’t I” I feel really guilty that I couldn’t get him to the hospital appointment but your advice about an optician is a good one and will follow it up if we can’t get another appointment at the hospital. I hope things get better for you and can I say ,Thank you. You always give such good advice and TP has been such a help.
     
  10. Helly68

    Helly68 Registered User

    Mar 12, 2018
    458
    Juliematch - saw your post above about having to cancel the hospital appointment. Don't feel guilty. It is such a hard balance with these things, but sometimes the risks are too great.

    The last time I took my mother to the hospital, she fell off a chair. Fortunately not hurt, but it taught me that even though her confusion wasn't that bad at that point, it was more than I could manage and I wouldnt be able to take her to appointments from her care home any more - at least not on my own.
    You need to consider your fathers, your own and others safety as a priority and sometimes the risks is too great. Some services will come into care homes (though you usually have to pay for this) which may be worth considering.
     
  11. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,360
    Essex
    Dear Julie,

    Dad's care home used to tell me about his aggression when I visited rather than call me. Just after Xmas he became more aggressive and the home called the dementia nurse who prescribed memantine. They started him on a low dose and then it was given to him only if he needed it.

    Sometimes his aggression could be caused by possible infections or constipation. Sadly he suffered from this before he passed away so I wonder whether your dad's shingles is still affecting him or whether he had some other problem that needs to be looked at.

    I myself had shingles a year ago and it took me a long time to get rid of it. A lot of people said they thought it was the stress of caring that brought it on.

    Thinking of you

    MaNaAk
     
  12. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Thank you Helly68 and MaNaAk. Dad had a great time at singing for the brain instead of the hospital trip, which I think ,did him so much more good. I think the guilt just comes with the role of carer.I remember when dad first had to go into care , there was guilt.When he settled and was happy there was guilt that perhaps he should have gone in earlier. His consultant is going to review his meds. He has COPD so chest infections are the norm, but he’s clear at the moment He’s been on antipsychotics for his delusions, as these cause him the most distress.It may be the increase in these that has caused his anger.His short term memory has been good up to now but even that is happening now so I guess we are moving on in the dementia journey. You know it’s coming but it still shocks you when it does. Best wishes and thanks again.It helps so much to get advice from people who know what it’s like.
     
  13. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Dementia is so baffling.Just spent the most lovely time with dad.Hes back to my happy contented Dad ,like he was before his anger and aggression started. He want to go and apologise to everyone ,as he remembers being awful but he is so confused as to why he was like it. I’ve explained to him about his illness , that Lewy body can affect his thinking and he accepted that this is the case.Im amazed at what he can understand and remember. I’m just going to make the most of this happy dad and try not to be frightened next time he gets angry.It was the right decision not to go to the hospital yesterday, I know that but today he asked when he had his appointment so I told him they cancelled it and we will get another one. Thanks to TP I’m getting good at love lies and I get good advice.Thank you all.
     
  14. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,360
    Essex
    I used to get amazed at dad with Alzheimers was able to remember as well. Before dad was diagnosed he said to me "I want you to remember the person I was". I remember my emotions getting the better of me and saying to him "I don't want you to forget me dad".

    After dad was diagnosed with possible mild on-set Alzheimers dad said "What is wrong with my brain?" and "it's all up here but it is jumbled up". As dad's illness developed he would still say things that surprised me and we continued to make memories after put him in the home. His care home was ten minutes walk away but when we went out he could still remember where he lived and he could recognise our neighbours if he saw them.

    Dad passed away three days before Father's Day this year and he still knew who I was. The Father's Day card had already been written and a present organised but I wrote another message in the card saying "I will never forget you dad" before putting it with the sympathy cards.

    Yes! I am still grieving and there are some frightening memories such as dad falling or getting aggressive with the carers but these are a minority compared to the other memories.

    MaNaAk
     
  15. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,360
    Essex
    Then last night I dreamt I had Alzheimers and was pleased to wake up.

    MaNaAk
     
  16. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,564
    Hi MaNaAk
    Your Dad sounds like a lovely man. You were very lucky to have him . My Dad always used to say we made a great team.
    Best wishes Susan
     
  17. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,360
    Essex
    Dear Susan,

    I think our dad's are (or in my case we're) alike he grew more reliant on me as his illness progressed and I felt closer to him. One of the sympathy cards came from a relative of one of the residents at dad's care home and literally said that his love for me shone through his Alzheimers. He kept saying how proud he was of me just as your dad is proud of you.

    MaNaAk
     
  18. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,564
    Dear MaNaAk,

    My Dad died last year aged 97 . He didn't have Dementia. It's my Mum that has it and Dad managed to keep everything together for both of them at home until his age and health problems overtook him. I was always his girl and he wanted to take care of me . So yes our Dads sound very similar. I know I was loved for all of my life . Best wishes Susan
     
  19. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    I too have a lovely relationship with my dad.He often says I don’t know what I would do without you and I feel the same. Im so sorry for your loss MaNaAk and Susan. Mum passed away 13 years ago and caring for him (he lived with me and my husband) has been hard but brought us so much closer. My visit yesterday was also good.The anger and aggression has completely gone.I know Lewy body can fluctuate but I wonder if there is something else going on.On Monday it was literally like a switch had been turned on.Ranting at me for taking his walking stick away( he was threatening staff and residents) and then “can we go for a walk” I think the MHT have been asked to see him so perhaps I will find out then.
     
  20. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,360
    Essex
    Dear Julie,

    I'm glad your dad is calmer but sometimes a urine infection can cause aggression and confusion so the home could look into this.

    MaNaAk
     

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