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Do you have a loved one with Alzheimers?

Posted , 5 users are following.

GMullen94
GMullen94

Hi everyone, 

Do you have a loved one with Alzheimers? Are you a full time carer for them? How are you and your family affected by it? Or do you know some else who is/has been affected by the disease? Would you like to talk about your experience? Or do you know someone who would? 

Alzheimers Disease is a subject very close to my heart and so, I'm looking to do a radio cocumentary on it. I'm focusing on how it affects the lives of the loved ones and the carers and what they go through. 

I understand it's a sensitive subjective, but I'm looking for a family to get to know and interview about their experience. If you're in the Staffordshire area, please feel free to contact me. I would love to hear from you. 

I hope this can be a cathartic experience for you and your family and I would love to do your story justice.

Thank you for reading, and please share this post on your social media! 

 

1 like, 7 replies

7 Replies

  • margaret92265
    margaret92265 GMullen94

    Posted

    Hi I am sorry to say I would have love to have told you my story of my strugles looking after my dear Wife of 38 years. who as had Epilepsy all her life and as suffered from Alzheimers for 5 half years. we live in Brigg  North Lincolnshire.

    God Bless you

    Mr James Bourne

    • linda37283
      linda37283 margaret92265

      Posted

      Hi I'm so sorry to hear this, its such a terrible condition and I so feel for you both..........Looking after my mom was exhausting with no rewards, it was very traumatic for us all. This was my moms worst nightmare and it took my mom away from me............she became a totally different person - so sad. I wish you strength and peace.

      God bless you both x

  • linda37283
    linda37283 GMullen94

    Posted

    Hi my mom died last september after suffering from alzheimers, she had been diagnosed 7years earlier. I come from a nursing background but this did not prepare me for the terrible sufferings mom went through..............I live in Cheslyn Hay near to Cannock but mom lived in Walsall West Midlands. Mom was the most loving generous person ever but alzheimers took everything from her............ She kept falling, eating out of the dust bin, escaping from the house (had to call police) became completley incontinent and would swear and thrash out for no reason.............It was heartbreaking...... I am terrified that I will become a victim to this awful condition. Good luck with your research.........
  • julie_25162
    julie_25162 GMullen94

    Posted

    I came onto this website as I am so very distressed that my mum (who has mixed dementia for 5 years) has yet again been taken off her Memantine by her psychiatrist.  This is the third time he has withdrawn this medication and it is so beneficial for my mum.  She has unfortunately just gone into a care home.  My sister and I particularly are devastated but, due to family disputes (step father) there was no other choice.  The psychiatrist has stopped mum's Memantine as the home (or someone) have reported her agitation has increased since being back on it but that is nonsense and the medication makes her so much more aware and lucid.  However as to your request, you would not believe what my family have been through over the last year, being barred from seeing our mum, arrest, mum being abused, going into care etc. the last year has been a nightmare, as if the disease itself is not bad enough.  But my biggest concern at present is fighting this doctor over this very beneficial medication. I feel as though he wants mum to 'give in' and behave in the care home and that perhaps he feels the medication stimulates her too much.  Why should she give in, she has done so very well until now and we want her to remember us and some of her experiences for as long as possible!  Sorry I am not based in Staffs though but feel like writing a book !
    • linda37283
      linda37283 julie_25162

      Posted

      Oh my god Julie, why would they do that? If this drug is helping your mom why stop it? You should ask for a case conference to be held and ask to attend............so worrying for you all sad 

      I to feel let down by the system, but this is only going to get worse - we are an ageing population - living longer.........In the future the number of Alzheimer sufferers is going to explode - something will have to be done............. I feel for you all, such an awful situation sad  

    • julie_25162
      julie_25162 linda37283

      Posted

      Hi Linda, we have a few 'best interest meetings' but due to the terrible family disputes, they care team I suppose are trying to keep both sides of the family happy but my step father and half brother are interested only in financial gain and made it quite clear to the court who thankfully seemed to see through.  My step father even said in his court statement that "he was happy for his wife to be at the care home, or on a Psychiatrict ward".  We feel that this is to do again with financial reasons. We fought to stop that 5 years ago!  The court did not grant him financial deputyship either, which he had asked for, and, as my siblings and I had asked for, a third party deputy is now involved on that side.  As to mum's care though, the Psychiatrist has written many letters discussing mum's agitation and they are all at dates when mum was not on the Memantine and had not been on it for 6 months!!  How then can it be that which is agitating her - I think I will ask for a private review of his letters etc.  The other medication mum is on, I have read, can cause agitation and sleep disturbance and yet they have made no effort to withdraw that, also she has had another water infection recently and actually slept for more or less two weeks.  Why did he not eliminate the UTI either?  I will keep you posted - thank you for your concern

       

    • julie00703
      julie00703 julie_25162

      Posted

      Hi Julie

      I have both parents living with me. Mums 14 years diagnosed and on mementamine and it's worked really well. Whereas dad did get agitated on it so it had been withdrawn. I have carers in and if we suspect UTI they get sample and I just take it to triage nurse. I've had battles in past over meds and have seen how one can be amazing on mum and opposite on dad but it was the mental health team that set these meds not the doctor. When dad was taken off mementamine it had to be done over s period of weeks and he was assessed by the team and myself for any significant changes. If you believe it helps you meed to speak to the mental health team and he specialist as part of my problems resulted from doctors. Specialist said you cannot just stop tablets or put them on full dose as these are very strong medicines and can be dangerous if not weaned off correctly

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