I feel so unsupported and alone

Discussion in 'I care for a person with dementia' started by t0ria, Mar 5, 2015.

  1. t0ria

    t0ria Registered User

    Feb 22, 2015
    Hi all, I really need to vent. My dad has alzheimers- he was diagnosed at 63 just after my mum died of cancer. He is now 67, still lives alone and independently and is just about coping, although the house is a pigsty, he keeps breaking everything and he never opens his post.

    He lives in Leicestershire, I live in Manchester and my older sister lives in Hertfordshire. We have no other family.

    I have just spent in extremely stressful 8 days at my dads, cleaning, organising and supporting him. It's his birthday next week so I asked my sister to invite him to visit her and she phoned him to say I'd asked her to but she was too busy (she's not). I never ever ask her for anything and I don't think she understands the pressure I am under with Dad.

    She's not seen him since Christmas, and that was only because I was away so she had to- she's never spent Christmas with him before. Before that she saw him in August. I can get to him about once a month but he needs much more visits than that.

    I just feel so alone and I don't know what to do. I don't feel like anyone is helping me and I can't manage him myself, it's too much for me to take. He has friends in the village he lives in but I can't rely on them for ever. I feel awful for being so self obsessed- he's got it far worse than me, I'm the kind of person who just gets on with it and never complains. My sisters refusal to help has just devastated me.

    I don't know what I am asking for from this post or even why I am posting it. Sorry to moan.
  2. florabunda

    florabunda Registered User

    Nov 13, 2014
    I just want to say poor you, it's hard when you live at a distance. Try calling your dad's
    local SS for a care assessment. Sorry I can't be more help.
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    #3 stanleypj, Mar 5, 2015
    Last edited: Mar 5, 2015
    Hello Victoria and welcome to TP.

    I know why you're posting.:) Most of us have felt like this. You're not moaning. You - perfectly understandably - want help. This is where you can get it.

    Long-distance caring is very difficult as many on TP know. There are also lots of people on here who will have had the experience of trying to get a little support from other family members without success. I'm sure you will get some helpful responses from people with similar problems.

    Two other places to get help:

    Admiral Nurses

    Local Alzheimer's Society Branch

    I can tell you from my own experience that the Admiral Nurse Service and the AS Society in Manchester will be helpful.

    Take care
  4. Beate

    Beate Registered User

    May 21, 2014
    #4 Beate, Mar 5, 2015
    Last edited: Mar 5, 2015
    Self obsessed? What on earth is self obsessed about you caring for your dad without any help or input from anyone? You must be exhausted. Forget about your sister for now, it's extremely difficult to rope in family members that don't want to know.

    Please contact adult social services in your dad's borough and ask them for help. Remember that you do not have duty of care for another person, whether legally or morally. Social Services are the ones with the duty of care so tell them to step up. Your dad needs a needs assessment and you need a carers assessment to prevent carer breakdown. He could get a care package with carers coming in daily, go to a day centre, get sitting service, get respite in a care home or ultimately a permanent care home stay. Whatever it is you'd like to happen, they should help you evaluate the options.

    Additionally, please get in touch with the Alzheimer's Society, Age UK, Crossroads, the Carers Centre - whatever is available in your area. They can offer both emotional and practical support, help you fill out forms, apply for allowances or act as your advocate with the authorities. And please get power of attorney sorted!

    Good luck and keep posting! You'll never be alone here.
  5. t0ria

    t0ria Registered User

    Feb 22, 2015
    Thanks a lot for you kind words and support, it really means a lot. I've been keeping it together but tonight I've just been in tears all evening. I do feel better knowing I've found people who get what it's like.
  6. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Hi!.i care for my dad and hes got my mum for company... (shes disabled and hes her carer).

    I know how you feel being a distance away..and sister that has something else on sorry!!!

    I hope for her sake its out of fear and upset shes staying away or not sharing the load!..
    If hope its not because shes not bothered!

    Dont be hard on yourself and i agree with the others contact all the ideas theuve given. They can help!

    Power of attorney already done?
    Sorry not nice to ask but if you havent got health and welfare ..you may find you have no authority to do certain things..the alz society officer will help you and advise you.

    Best wishes..

    Sent from my GT-I9505 using Talking Point mobile app
  7. t0ria

    t0ria Registered User

    Feb 22, 2015
    I have financial POA but I haven't done the health one, what will happen if I don't get that?
  8. Tin

    Tin Registered User

    May 18, 2014
    I think it must be so much harder to care from a distance. My mum now lives with me and to a certain point I can slow down a little now, if the housework doesn't get done today it will be tomorrow or next week. All her post comes to me so I can deal with it in my own time and I have mum's permission to talk to anyone on her behalf. All the other little things too, knowing that 99.9% of the time she is safe, warm, clean and eating proper food.

    For you the stress must be enormous and I can imagine that as soon as you get in your car to return home the worry begins. So stick with us, come here to offload, you'll get nothing but support.
  9. Miss shiraz

    Miss shiraz Registered User

    Dec 24, 2014
    A few other suggestions that are hopefully simple to put in place if your dad agrees and is willing to accept help...
    meals on wheels - we have a hot dinner delivered to mil 2 or 3 times a week. For a small extra charge, they will even put on a plate, make a drink, wash up etc. You can find details on your local authority website, cost is £5 per meal. They will also contact us if there are any concerns.
    Post - can you get his post redirected to you? Ensure all his bills are set up to be paid by direct debit, so at least these are paid.
    PoA - is a must. You can then help with his finances and the health/welfare is then ready for when its needed.
    can you get someone to help him with cleaning, its also another pair of eyes and a bit of company. Some men aren't great at cleaningand don't want to be bothered (low on list of priorities!), even without dementia.. ask my hubby!
    A friend of ours has become a companion for mil and takes her out, she sees her as a new friend and we pay her for her time.
    Unfortunately some of these suggestions would incur additional cost, not sure of your dad's financial position but a POA would allow you to pay using your dad's money.
    keep posting, ranting (get it off your chest), everyone on here understands and there is soooo much experience that the kind TPers will share with you.
  10. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    We don't have health POA either and it hasn't really made much difference but I think it depends very much on who you encounter along the way so, if it's not too late, it would be worth going for. If it's too late, as it was for us, just hope that the "officials" you encounter along the way have some common sense.
  11. Miss shiraz

    Miss shiraz Registered User

    Dec 24, 2014
    Also....Re: your sister, i would keep her informed of what you're doing, maybe by email if this is easier. Hopefully she might feel guilty and help.. ask her to do some simple tasks to get her involved, if she won't then she should be ashamed. Does she know how you are feeling?
    But do what you can yourself and get some help from those that can and will help.... there are many kind folk that will.
  12. flossielime

    flossielime Registered User

    May 8, 2014
    #12 flossielime, Mar 5, 2015
    Last edited by a moderator: Mar 5, 2015
    Firstly I want to send (((((((((((((((((((((((((hugs)))))))))))))))))))). The situation with your sister is frustrating but you have to rise above it. My brother went off to the other side of the world when my dad needed help and I was angry for a while. But I now think more fool him. When my dad does pass I will have the certain knowledge that I did my best for him. I will be able to sleep easy. That is not saying I did everything for my dad. i have a young family, which I know he would not want neglected but I have done my best with the time and resources available.

    My dad lives local to me so i cant even begin to imagine the problems of distance. But one thing that really helped up was I put an advert in a local shop for a home help. I interviewed the 3 replies we got and chose the one I just knew would be the best. She has turned out to be a god send. She does all what i cant do due to other commitments. If you can get the right person it will help.
  13. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello, i understand that you feel alone. We all feel this way which is why this forum is so important. We can support you because we understand. My mum is 81 and has dementia. I have a job, husband, home and children and am mums only carer. My sister lives alone, does not work and does nothing. She wont even phone. Call in all thr help you can get. Befrienders, day care, friends and carers. Get a cleaner if you can. Some cleaners will do washing and ironing. You are doing your best and doing more than anyone else. Your sister is not prepared to do anything so dont waste your energy on her. Keep posting and we will all be there for you. Xx Quilty
  14. 2197alexandra

    2197alexandra Registered User

    Oct 28, 2013
    Hi not sure which area of Leicestershire your dad is but I'm in Leicestershire in a village and I have received the best of everything I could of ever wanted for dad. I don't know if I was just lucky but starting from his GP to then the memory clinic then the more focused care from his district nurse team his Occuaptional health therapist.
    I have been on here many times when dad was alive praising the support I have received. I do hope you can call on some of the services I used.
    If you need any numbers for anything pm me and I'll help as much as I can. There is not much in Leicester that I haven't come across throughout mine and dads dementia journey.
  15. Adcat

    Adcat Registered User

    Jun 15, 2014
    Hi Victoria,
    I can sympathise with you re your sister. I got one of those too. The last time I asked for help I got a text message saying 'ATM I'm to busy, work non negotiable' it took me a while to work out ATM means at the moment!!!
    You've been given great advice already, please take it.
    Take care
  16. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I don't know how people cope at a distance like that, my mother only lived 10 miles away on the other side of Manchester and I found that very difficult to do, in the end she moved in with us. Are the social services in his area aware, if not do so as he is a vulnerable adult from the way you describe his living conditions.
    As for the lazy siblings don't even go there with the experience I had with mine and at the end of the day (by which I mean the funeral) they never even said thank-you.

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