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. blueviolet

    blueviolet Registered User

    Mar 1, 2015
    19
    I'm sure everyone reading this will be feeling very flat after the Christmas festivities. I am feeling exceptionally low as we have had all our family around until New Year and when they left I cried and cried and felt so alone. My husband has dementia and aphasia and I cannot communicate with him. Also his moods have become more frequent. One moment quite happy and then without any warning he turns and a look comes across his face which I recognise. He becomes very hostile (not physically) towards me. I have learned to ignore this mood and walk away but it really hurts. We have been married for 43 years and have been so very happy but now I am finding it very difficult to cope 24/7. I have just started having help 6 hours a week after many years of coping alone. The carer came this morning and I broke down and she said I definitely needed some respite. I cannot think of my husband going away even for a couple of days let alone a week. We have never been apart and the pain in my heart of what lies ahead is all consuming. Sorry for the rambling but I just needed to get this dreadful anxiety off my chest.
     
  2. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Oh blueviolet, I'm sorry you're feeling so low. The January blues on top of everything else you're going through are just too much. It can be such a depressing time of year.

    I wonder, if you're not ready for full respite just yet, whether you would consider a day centre, or day care for your husband at a local home, say once a week? This could very gradually be increased over time, until you felt more comfortable with the thought of being apart from your husband for a little while to have a rest.

    Thinking of you.
     
  3. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,041
    Hello blueviolet:)

    Am not surprised you are feeling low especially if you have been surrounded by family over the festive period.

    I wonder if CG is right and that respite in the form of separation from your husband in a care facility is not what you need right now. You both must still be adjusting to getting used to the extra help that you are now getting and that can take a while to 'adapt' to and make the most of as you both get used to carers and they get used to you. I had a little weep with my home help on her return today and that in itself has eased the burden.

    CG's suggestion of a daycare facility would be a gradual thing for both you and your husband. Hoping the way ahead is more gentle for you than you fear.

    Best wishes
    Sue:)
     
  4. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello blueviolet, l was where you are now 4months ago, been with hubby 55yrs, never had a day apart, l was on the verge of a nervous breakdown, we had tried day car and carer's hubby refused anyone coming in the house, l day at day care he went into the garden and jumped over the fence, Dr. advised 2 weeks respite to give me a break, the relief was so good after 10yrs of caring, he is now in permentant care, l visit everyday, l know l could not have him back home, l would not have thought this would ever happen 4months ago, as l always said l would never put my hubby into a CH, just shows that you should never say never. Thinking of you at this very difficult time
     
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Oh Sweetie, there's no need to apologise as that's exactly what TP is for - it's somewhere to offload our feelings, in the sure and certain knowledge that others will understand. In the early days, things are more manageable. They don't seem so at the time, but it's when things progress and the loved ones we adored, and adored us, seem to change their characters, that things are especially hard.

    There's nothing wrong in asking for help, and it doesn't matter if we've been carers for 12 weeks, 12 months or 12 years - when you need a break, that's the right time. My husband was eventually at Day Centres for 6 days a week, and if I could have found one open on a Sunday, he'd have gone to that as well. After 12 years, I needed a few hours a day to recharge my batteries.

    He went into Residential Care for the last few months, as I just couldn't cope any longer, and though, after nearly 50 years together, it was hard - so is caring for someone with Alzheimer's. Have you had a Carer's Assessment, because you need to have your state of health, both body and mind, considered too.

    I wish you well. xxx
     
  6. pony-mad

    pony-mad Registered User

    May 23, 2014
    1,073
    Mid-Wales
    Blue Violet, I can really feel for you!!!
    I can also relate to the aloneness you are feeling. Last summer I was feeling much like you do now. I was close to tears a lot of the time. I went for counselling at the GP surgery and it helped to talk to someone who understood and could help me see what was needed. I looked at respite but having visited a CH I knew my OH was not ready for that for although he has no language, he is still very active. We tried a day centre but it made him very anxious, so my excellent social worker organised direct payments for 10 hours a week to allow me time to myself. It has made such a difference to my quality of life. I hope you can find a way to improve the quality of your life which will allow you to continue caring for your husband. Good luck!


    Sent from my iPhone using Talking Point
     
  7. MaryMcat

    MaryMcat Registered User

    Feb 12, 2013
    4
    mary

    O
     
  8. MaryMcat

    MaryMcat Registered User

    Feb 12, 2013
    4
    mary

    Sorry just joined and not sure how this works I do feel for you and have those days my self. My husband has not been assessed yet but he is so forgetful and so deaf there is no conversation between us and it get so lonely at times but at least I can still leave him and get out and about and have good friends. My daughter lives in France and son is up in Warrington so no family about. I am very worried about the future and feel you must be much worst off at the moment than me. Hope you feel brighter soon and get lots of help.
     
  9. blueviolet

    blueviolet Registered User

    Mar 1, 2015
    19
    A big thank you to you all for your supportive messages. It really helps knowing others know what you are going through. I am going to ask for a night or maybe two of respite to see how my husband copes. Even though I know it is for my benefit I need to know he is not anxious and calm. Love to you all.
     
  10. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Look at respite as a break and nothing else. Your hubby will be well cared for and you can recharge your batteries. To keep caring you need to keep strong and well.

    It can be OK and you are right to ask for help. Very few if any can do this without help.
    Thinking about you
    xx
    Quilty
     

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