1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Hi, I'm new here and feeling very down

Discussion in 'I have a partner with dementia' started by Helped, Jul 9, 2019.

  1. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
    My husband Jim (74) was diagnosed with brain atrophy a couple of years ago. We have no children and no relatives, it is just us. Jim was a mathematician, extremely intelligent and very active hobby sailor but since being diagnosed with Type II Diabetes nearly 20 years ago and a successful operation for bowel cancer 16 years ago, his health has been in decline. He is developing cataracts and will eventually have them removed. He has developed a slow shuffling walk and is a bit unsteady on his feet. He refuses to admit he has any problems at all (although he does admit he cannot remember anything) and will not use any sort of walking aid.

    He has become very picky about food and doesn't eat well, it is difficult to eat out like we used to because he leaves so much and it is a bit embarrassing, not to say a waste of money. He tries very hard to do things but looses concentration easily, he mostly sits in a chair either watching TV or sleeping. He does still have a sense of humour though , because he said that at least all the repeats on TV don't affect him has he can't remember how many times he may have seen a program. I do everything around the house, care for him and look after a huge garden. I would love to move to a house without a garden but the thought of the stress of moving and the stress of moving Jim puts me off at present

    At the moment I am managing to cope, but I can see the writing on the wall. He has good days but today wasn't one of them! I am sorry that my first post was such a depressed one, but I badly needed to talk to someone and I know I am far from alone in my troubles.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,755
    Female
    Scotland
    You talk away. There will always be someone reading and thinking about you and some will recognise the symptoms from a person they have cared for. Are you getting any help in the form of carers, daycentre, advice on what help is out there for the future?

    Do you claim Attendance Allowance which might help pay for a gardener or other help? It is not means tested so give it some thought.
     
  3. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
    It is so nice to know that there is someone out there! That makes me feel a lot better.

    Beyond the initial diagnosis and some dementia nurses (specialists??) coming to the house to do some sort of assessment, we have had nothing. This may have a lot to do with the fact that the nurses were not very impressive and Jim got irritated, became very uncooperative and sent them away. with a flea in their ear! Quite frankly, I couldn't really blame him, they were totally lacking in tact, diplomacy and talked down to BOTH of us.

    He has tablets for his diabetes but that is all.

    He can do some things , he has just made himself a cup of tea. OK he missed putting it on the table and it went all over the floor but at least he made it himself! I have never heard of Attendance Allowance so I will look into this.

    I doubt he would like day care centres, he has never been one for joining groups and that sort of thing makes him grumpy. He does like me to think of days out for him, and he like me to drive him round in the car most days.

    Thank yu so much for being there, I really appreciate it
     
  4. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    126
     
  5. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    200
    Female
    Mid Lincs
    Welcome tp TP. There are many here who understand and if you feel overwelmed or just want to vent or need to ask questions there's always someone who can help.
     
  6. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
     
  7. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
    Thank you, it has been a bad day but it is great not to feel so isolated
     
  8. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    126
    Hello Helped,
    So glad you found this site, it is the one place where you can say what you feel and know you are among people who understand.
    If you are having problems and need to help I have always found there are so many kind and knowledgeable people here to help at all times, so keep posting.
    Kathy.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,262
    Female
    Dundee
    Hello @Helped and welcome from me too.

    I’m sorry to read about your situation but I’m so glad you’ve found this forum. You’ll find lots of help and support here. It’s also a great place just to have a rant or get things off your chest if you need to. There’s always someone here to listen.
     
  10. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
     
  11. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
    Thank you, its great to find a 'home' - I always feel guilty if I 'vent' to others
     
  12. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
     
  13. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
    Thank you so much, it is great to find a place I can talk about these things without feeling guilty. It is difficult to look after someone who doesn't want to be looked after and somedays I just find it so overwhelming. But tomorrow is another day and maybe it will be a better one.
     
  14. Philbo

    Philbo Registered User

    Feb 28, 2017
    648
    Male
    Kent
    Hi @Helped and welcome

    If you have not done so already, have a search online for carer support in your area. AZ society and Age UK are good places to start?

    When my wife was first diagnosed, although we have friends and family around us, I felt very lost.
    A friend told me about a local dementia monthly coffee morning and from there, I found a local carer support charitable organisation. They sent someone to see us who was absolutely brilliant. He signposted where we could go for further help/advice and told me about things like attendance allowance, council tax exemptions, carer assessments etc.

    I am sure there will be something similar in your area?

    Best wishes
    Phil
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,137
    Kent
    I had this problem with my husband @ Helped. He went once and refused to go again.

    I was granted Direct payments which enabled me to get an agency carer in on the pretext of coming to help me clean the house. It worked well and enabled me to go out for a couple of hours.

    If you haven`t yet applied for Attendance Allowance, do you know you can also get a 25% reduction on your rates?
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hello @Helped
    a warm welcome from me too
    a few things have been mentioned by others, so here are some links that may pick up on their suggestions

    contact your Local Authority Adult Services to arrange an assessment of your husband's care needs and a carer's assessment for yourself as you both have a right to these (don't discuss your husband's financial situation at this point) ... a care package may then be suggested eg home care visits, day care, respite (this is as much to give you a break as to support your husband, so maybe try ways to 'persuade' your husband to attend day care eg 'I need to have a day to get chores done so it will help me' or he will be a volunteer helper, rather than a 'customer')
    a financial assessment will then be organised on your husband's finances only plus half of any joint savings (your home is not taken into account nor are your finances)
    https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

    https://www.gov.uk/attendance-allowance/how-to-claim
    when you fill in the forms have in mind your husband's worst days and you may feel as though you are repeating points, but mention everything and be brutally honest (I found it hard to read back after I'd completed for my dad, but it brought home how much support he needed and how much he deserved the AA) .. your local AgeUK may be able to help you complete the forms
    https://www.ageuk.org.uk

    once AA is in place, contact your Council to apply for a Council Tax disregard in respect of your husband, so effectively you will be charged at single occupant's rate ... and ask if there is a further reduction as you are a fulltime carer

    access the Directory of local services on the main AS site
    https://www.alzheimers.org.uk/get-support/your-support-services

    think of arranging Lasting Powers of Aattorney, for you and your husband, so someone has legal authority to help you both .. of course you can be Attorney for your husband ... worth having 2 to act jointly and severally and a named replacement
    https://www.gov.uk/power-of-attorney
     
  17. SoAloneIn Suffolk

    SoAloneIn Suffolk New member

    Jul 9, 2019
    6
    The forms for Attendance Allowance run to 50+ pages, but don't let that put you off! If necessary you can get assistance with such forms from the local Citizens Advice Bureau. You must claim for it because it is absolutely your right to have it. The government does little enough to pay carers considering what we do...
     
  18. Bree

    Bree Registered User

    Oct 16, 2013
    237
    It's worth mentioning at this point that if your application for Attendance Allowance is refused first time, tell them you intend to appeal against their decision. This happened to us, in the end I didn't need to appeal, they rang and asked why we were appealing against their decision, when I told them over the phone, they sent a letter to say that it had been granted. Claim for everything you're both entitled to.

    You're never alone here because we have all been through it, or are going through it. We all care.
     
  19. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    I nearly moved mum but decided against it, having realised it would completely throw a spanner in the works, she is home now, and this is it until that changes in her idea of where home is.

    A few good people in the same boat have said try to take one day at a time, and not to predict the future, I have found that helps when I remember to apply it myself. Its a horrible feeling trying to map out where things will go. Take care
     
  20. Helped

    Helped Registered User

    Jul 9, 2019
    24
    Female
     

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