1. Tex

    Tex Registered User

    Feb 21, 2015
    I am new to this and am finding caring for my husband over the last few weeks after he was diagnosed quite hard at times. Little things like he can't follow a T V play or film any more, so I can't as he is very distracting .He seems like a little boy sometimes. I really don't know how to handle this, it's all so new to me,I miss the companionship.
    I really don't know where to turn, I have read up on this and am still coming to terms with it. All the family know now , I am having to look after the finances now, and am finding it very hard to take over as my hubby always looked after tax ,insurance and the like, I don't want to undermine him ,but I need to make sure everything is in order.
    He has always been a quiet man ,so joining groups would be odd to him, but I feel we need this help.
    In turmoil ...........
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello and welcome. Its is a very hard diagnosis for everyone. Have you tried the Alzheimers society helpline? In ky worst days they were wonderful. I cried buckets to some poor woman who was a rock. They can give you practical advice. Keep posting as you will get othets to help support you better than i can.
  3. Tex

    Tex Registered User

    Feb 21, 2015
    Thank you

    Thank you for your kind words and help x
  4. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    #4 lin1, Jan 4, 2016
    Last edited: Jan 5, 2016
    Hello Tex, Welcome to TP though I am sorry of your need to find us.
    It is hard when you are first told , even though you knew something was wrong beforehand, you are not only in shock but are grieving too.

    You probably have many questions, and TP is a good place to ask what you need to know, tbh it's probably easier to ask us rather than go looking round this site.

    I have no wish to overwhelm you but, their are some things it is wise to get in place ASAP. One of them is the two types of Lasting power of Attorney providing your husband is agreeable and understands at the time the certificate provider explains it just before your husband signs it.
    Filling the forms out is quite easy online, and works out much cheaper than using a Solictor, though many people do use a solicitor.

    Financial and property LPA.
    Health and Welfare LPA ,
    this one can only be used when the person doesnt have capacity to understand or is unable communicate in any way and gives the Attorneys (you and or other family members) the right to decide what's best and also importantly ensures that doctors , social services etc must communicate with you .

    here is the number of the Alzheimer's national helpline that Quilty mentioned
    0300 222 1122

    If your in the UK , their is a charity that runs Admiral Nursing, now these arn't hands on nurses, they provide much needed info about dementia and help to support people and their families, they specialise in Dementia.
    unfortunately the are few and far between, but they do have a National helpline

    Sorry to give you so much reading and much more to think about.
  5. Jinx

    Jinx Registered User

    Mar 13, 2014
    Tex, welcome to TP, also sorry you had to find us but you'll get enormous support and help here, it's been a lifeline for me. Don't be afraid to ask anything, someone will have advice. xxx

    Sent from my iPad using Talking Point
  6. 1mindy

    1mindy Registered User

    Jul 21, 2015
    I can totally see the point you are at. As time goes on from my oh diagnosis in 2012 I have struggled just like you. It is a very lonely place to be I describe it as isolation,and my oh has never been one to socialise so never leaves me In fact there are very few things around here geared up to his interests.
    It is a question of accepting you are now having to make the decisions ,something I struggled with. Upon til very recently I still referred to him when making decisions, and have only just got poa, So to me you sound like you have accepted that you need to take control, and are dealing with that well. With all the help and support out there you will be able to access things appropriate to your situation. But you may have to record programmes to watch them in stages I'm afraid
  7. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Hi Tex, and a warm welcome from me too. :) It is so overwhelming in the early days, and there are so many things that you have to come to terms with, but you will. And the help and support you'll receive on Talking Point is wonderful.

    I know exactly what you mean about TV plays and films, as in the early days, John would ask me so many questions as to who was the villain, or the hero, and was somebody dead or not etc. So I decided that if there was something that I really wanted to watch, I'd video it, and then watch it when he was asleep, or otherwise occupied.

    Sometimes we'd watch it together, and though I'd be constantly pressing the pause button, to answer his questions, it made things easier. Often, it's the little things that can drive you to distraction. Regarding finances and paying the bills, this can be so daunting if you've never had to tackle these things before. If you have a joint current account, just check that as many things as possible, like Council Tax and fuel, are paid by Direct Debit, as that's one less thing to worry about.

    And if your hubby has been diagnosed with Alzheimer's, you're entitled to a 25% discount on your Council Tax. Just phone your Local Authority, and ask for the SMI form (Severe Mental Impairment). It's easy to complete, and if you need any help, just PM me, and I'll be happy to answer any questions you may have.

    I wish you and your husband well. xxx
  8. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    #8 jaymor, Jan 5, 2016
    Last edited: Jan 5, 2016
    Hello Tex and welcome to Talking Point.

    Like you I was shell shocked and devastated when my husband was diagnosed. I was three months off retiring and all our plans seemed to have been shattered.

    We got all the necessary things out of the way, we both had LPAs drawn up and reviewed our wills. When this was sorted and things settled we realised that things would change but not over night. We were given a CPN and she set up a small group for the 4 early onset patients she had. My husband was 62. I went to the first couple with him as my husband like yours, was a quiet man who found it difficult to mix. He soon got used to the other three men and I just dropped him off.

    This group lost its funding so we had to find something else for him. Not easy and got changed so many times because if care facilities closing or being amalgamated with another in a different area.

    We learned very early to take every day as it comes. You can't change yesterday and you can't second guess what tomorrow will bring.

    The Carer's Association have meetings which both carer and cared for can attend. I left it a bit late to join because I was afraid that my husband would be distressed to see others much worse than he was. I need not have worried because I could honestly not tell who was the carer and who was the cared for when we attended. I still do attend now on my own as my husband is now in a nursing home. He is now into his 11 th year post diagnosis. We have met some really lovely people on our journey and I have three great dementia friends who I spend time with. Without them I don't think I would have managed as well as I have. Talking Point too has been a place that has made me feel safe and able to talk about things that I would not speak about to some family and some friends who had no idea about dementia.

    I already took responsibility for the financial side of our life, being a banker from the age of 18 to retirement it seemed to just become my job by default:). I found the general up keep if the home difficult as my husband lost the ability to do all the maintenance he had always done. I can't believe how much everything costs now I have to bring workmen in.

    AS also have monthly meetings that both carer and cared for can attend. Yet another place to get help and support from.

    I hope you can find somewhere where you both can go for some social time and know that everyone understands and can offer friendship.
  9. leicester61

    leicester61 Registered User

    Aug 26, 2012
    Hi Tex
    I was in the exact place you are a few yrs ago, over three yrs later i am now ontop of all things financial, medical etc. It is very hard though and there is so much to think about and do it does become overwhelming. There are so many good and knowledgable people on this site who will always help when they can. Have you looked at claiming PIP ( the old disability allowance) this is not means tested and has helped us loads. Anyway i dont want to overwhelm you anymore but if there is anything i can do to help please just ask.
    ps: My husband is only 55 and I think that was what i struggled with the most.
    take care
  10. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    Hi Tex. so sorry to see your post and I know how you feel. I am finding the change in role from wife to carer very difficult. I miss the companionship and the conversation. We are in our 60s and have been married nearly 46 years.
    Taking over all responsibilities and making all the decisions is so hard after you have been used to sharing such things. But somehow we have to accept its a fact of life.
    Do you have practical things in place, like Power of Attorney, attendance allowance, reduced council tax?
    Mick wasn't really a 'groups' person either but we have recently started going to memory cafes in the area and he has enjoyed them. I find them supportive too as it is a way of meeting other carers as well as someone from the Alzheimer's society. I am thinking about going along to singing for the brain although Mick has ever been a singer.
    Mick really enjoys his fortnightly visits from his befriender who goes out with him. Are you aware of the befriending service from Alzheimer's society?
    Keep posting. I find TP really supportive.

    Sent from my iPad using Talking Point
  11. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    Hello Tex

    Just wanted to welcome you to TP.

    Hubby has vascular dementia and was already housebound due to physical problems, so he would be unable to join in groups even if that was available where we live. I know what you mean about watching tv and, as has been suggested, I record programmes so that I can watch later without interruption or watch together with lots of pauses to answer questions, or to deal with any help hubby requires.

    I hope something helpful is available in your area, eg, if you can go to groups together it might be good for you to meet others who are caring for loved ones.
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi and welcome from me too.

    No stage of the disease is easy but I think the early stages are hard. My husband was diagnosed in October 2001 so we've had a long time moving through the stages. Each brings its on difficulties but you will find so much support here. You've already been given great advice. Any time you have a query or a question or a concern - or indeed just want to have a wee rant - just come to TP. There will always be someone around to listen.

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