1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Angel8839

    Angel8839 Registered User

    Jan 12, 2015
    2
    It's been a terrible six months, my husband who is 75, I'm 58 we found out in June that he has terminal prostate cancer, then a couple of months ago we found he had a heart problem.
    Now we have learned he has alzheimers, we are still awaiting the results, but the doctors are very sure.
    He has been getting worse over the last few weeks with hallucinations, he's not sleeping, he can be up at 2,3 and 4am, he starts talking to himself, or to people who are not there. He also gets very paranoid and keeps saying I'm making it all up.
    He gets very agitated if i mention things he's forgotten he's told me. He finds it very hard to get his words out and just lately he has started talking to me like I'm a third person.He will sit and talk to me about his wife I say to him I'm your wife. This was the part I feared most if he started to forget me, it's not all the time, but when it does happen it hits me like a ton of bricks every time. I am also disabled, i am in pain every day and I have noticed my husband doesn't have the same loving feelings he used to have. Some days he's like the man I married but as soon as my guard goes down, it's like he's a different person.
    His daughters do help the best they can but they have families of there own. They also don't see him at his worst.
     
  2. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi Angel and welcome to TP :)

    I am so sorry that you are having such an awful time. You have so much to cope with, and to be in pain yourself at the same time......well, life just isn't fair, is it?

    I wonder whether your husband has had a needs assessment through social services? It certainly sounds like he (and you) need some support. Also I wonder whether you have claimed Attendance Allowance for him? A bit of extra cash can go a long way in arranging help. As you are 58, you may also be entitled to Carers Allowance.

    Contact your local Carers Trust, or Alzheimer's Society branch, or AgeUK, for support.

    I am sure that others will be along with more ideas, but I just wanted you to know that you are not alone, you will get lots of support on here :)

    Good luck and (((hugs)))

    Lindy xx
     
  3. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    580
    If you haven't done so already, please contact Macmillan as well. They can help you in all sorts of ways too.
     
  4. WIFE

    WIFE Registered User

    May 23, 2014
    857
    WEST SUSSEX
    Angel - I too went through the phase of the "third person". Make it easy on yourself - you cannot change his reasoning so just try to agree with him. They sadly do lose the ability to empathise - it is so hard but for you the best way is to try to accept that it is all just part of this dreadful illness.

    You have my utmost loving thoughts - I've been there and know how hard it is to bear.
     
  5. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Am sorry to read your post. As WIFE says, this happens frequently and I too know how hurtful it is. It probably won't help you now but you do gradually begin to get used to it and it becomes less painful when your brain accepts that it is not your OH but the illness talking. Just one of the symptoms of this cruel disease. My OH also used to spend long periods talking to himself in the mirror and even introduced me to his image on occasions. Strangely enough his speech pattern became almost normal at those times and I found it fascinating to listen to his conversations, especially as he couldn't really to talk to me any more

    Sent from my GT-N5110
     
  6. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Angel a warm welcome to talking point, you will get lots of help and support from everyone here at TP, if its any help to you l am a second person, my hubby talks to me all the time about his imaginary wife, what ever l stay he says my wife does that, but cannot convince him its me, this has been going on for about a year. We just have to agree, he does get very upset because he doesn't know where his wife is, l find this hard to deal with. It does make me feel better to talk to people here on TP so sorry you and your hubby have other health problems ♡♡♡
     
  7. MReader

    MReader Registered User

    Apr 30, 2011
    191
    essex
    Hi Angel
    I am in a very similar situation to you & your husband - I am 68 whilst my husband is 81. However, unlike you, I am in reasonable health.
    Malcolm has late stage mixed dementia (following a stroke 5 years ago), heart problems (he has had 2 cardiac stents inserted, also 5 years ago) and terminal prostate cancer (diagnosed 8 years ago but now in his bones & brain) His hospice nurse has said he will probably not be with us in the spring.
    So I can guess what you are going through - its terrible as nobody knows if his problems are dementia or cancer related.
    I am in contact with the local Alzheimer's society - they give fantastic support - and Macmillan - who put me in touch with the local Hospice - they also give amazing support.
    I want to keep Malcolm at home with me as long as it is possible.
    I was advised by our GP & the hospice to complete an Advance Decision & Non-Intervention documents on my husband's behalf (I have Enduring PoA)- the hospice nurse filled these in with me - and now I have the confidence that if my husband has a medical emergency, he will be taken to the hospice rather than a general hospital.
    He has also been encouraged to go to the day centre at the hospice to give me a break & get him out of bed - he spends about 20 hours a day in bed - I dare not go out & leave him in case anything happens & I would never forgive myself.
    If you have not contacted Social Services, then do so - I was allocated a Social Worker so again I know if I need equipment or changes to our house I am in their system. Also they will help with payment for respite & care.
    Get all the help you can - I was refusing this until recently but now realise I was being silly & stubborn - nobody can give the amount of care needed in these situations on their own.
    Lots of hugs x
     
  8. Angel8839

    Angel8839 Registered User

    Jan 12, 2015
    2
    Thankyou so much for your kind words of encouragement, i have been feeling so alone lately, TP is all very new to me and to know I'm not alone does help.
    My husbands cancer has also gone to his bones, we are waiting to find out the results of his Mri scan on his brain, i don't know if it is all connected with the cancer or alzheimers.
    I sit across from the doctors and there telling me all the medical terms, but my mind just goes blank and when I come out with my husband, he will ask what was all that the doctor said and I'm none the wiser it all goes over my head.
    Thankyou so much for your kind words, I wish you both well xxx
     
  9. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    So sorry to read your post Mreader. Life must be extremely painful and difficult. Wish I could offer some comfort and support other than the virtual kind.

    Sent from my GT-N5110
     
  10. MReader

    MReader Registered User

    Apr 30, 2011
    191
    essex
    Hi Angel
    I also did not understand all the 'jargon' the doctors said about my husband's condition - whether it was to do with the dementia or the cancer.
    The outreach worker from the Alzheimer's Society explained it all in words of 1 syllable about his dementia & the Macmillan nurse did the same about his cancer.
    They both gave me their email addresses so I could ask anything I had not thought of previously
    You truly are not alone - it is just a case of finding the people who can help & support you
    There is also a similar site to this for people with cancer - Macmillan forum (Hope its OK to say this)
    Keep strong & get all the help you can - he needs you
     

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