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. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    My Dad has had Dementia for about 3 years. He lives alone until now.

    I am his only son with my own family. My life feels so empty and this is not me. I work full time. I have two beautiful kids but I am alone.

    Dad went wondering and ended up in Epsom hospital. Two weeks later he was released. I am staying with him and finding it extremely difficult. I miss my family who are 30 mins away by car.

    I have learned that because he is over the threshold he will have to self fund. He owns his house. I feel angry that his house maybe taken away. He worked all his life. My mum died when I was 12. He brought me up.

    I see nothing positive and I feel so sad. Some days Dad can't remember my name. If I take him to see his grandchildren oldest being 10 Dad thinks he is at his place and is strict with them. I can't take him home anymore. My 10 year old is so so upset.

    I have thought about house trusts. I have estates agents coming to see if his monthly income and rental income will pay for his care. I am hurting inside and want this to end.

    So empty, so alone. I have had to go sick just so I can arrange something. I try to remain positive. I am so so sad to see dad not being my dad and I am physicality and mentally getting ill and I am only young...
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,217
    Merseyside
    Welcome to TP :)

    I'm so sorry you're having such a tough time. You'll get lots of support here.

    Your dad's care is the most important thing & if his house has to be sold to pay for that then it will be worth it to know your dad is safe & well cared for.

    Do you have counsellors at work who you could talk to you?
     
  3. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    First things first: renting to supplement his pension may be a good idea that enables you to hang onto the house, which I'm sure is what your dad would want to happen.
    Alternatively, is there a possibility you could divide his house so that you can live with your family separately in part of it? Or that you could extend yours with a self-contained annexe so that he could live there. With, in both cases, carers coming in for his needs.

    Secondly, do explain to your children that your dad is not himself.

    Others will doubtless come along soon with more good advice. On TP you are not alone.
     
  4. Dazmum

    Dazmum Registered User

    I'm so sorry to read your post, you sound so sad, and many of us that have been in a similar place know how you feel. Of course you miss your family and I bet they miss you. Being an only child is really hard in this situation ( I am too) and sometimes you just wish for someone else to share the care and worry with. It really does take it's toll on your health, and you do need to take care of yourself too.

    Your work may will give you compassionate leave rather than you having to go sick, some do. Has your dad had an assessment of any kind, and is there anywhere he could now go into respite, to give you time to get something more permanent sorted out? That would allow you to go back to your family. Once you manage to find a suitable place for your dad, then your life can be reclaimed, while still being able to care for him.

    Others will be along soon with more practical advice than mine, but I just wanted to respond to you xxx
     
  5. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    514
    It must be a very difficult time for you, especially if you don't have your family with you for support.

    One small thing - has your dad been awarded Attendance Allowance? If not, it is worth you applying on his behalf, because it would be another small amount of money towards the cost of a care home.
     
  6. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    Does your dad get Attendance Allowance? It's not means-tested and if awarded he can also claim the SMI exempting from council tax. All these help with funding care costs.

    Age UK and AS local branches will have advisers who can help you with the forms and make everything that's relevant is included.

    There are so many things to worry about and I wouldn't have known about either of these without TP. I'm not an only child but these wonderful folk have been far more help to me than either of my siblings. They were supportive, but didn't offer much practical help.

    You have found the best place to be in tough times.
     
  7. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    847
    You will hopefully feel better when your Dad is settled.Does he need a care home or would a full care package be sufficient?As he is wandering maybe not.As far as the house goes I've always told myself that if my mum and dad had been well and for example sold up to travel the world I wouldn't have seen anything wrong in that.It's their money till they die.I think your peace of mind and your family are the most important things.Do what it takes.
     
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,051
    Yorkshire
    Hello mydadslife
    you sound so down - so I'm glad you've come along to TP where you can post whatever you need to say and it will be read with sympathy, as you've already discovered
    I just wonder whether your dad was discharged from hospital with a reablement care package in place, as you don't seem to be getting any help - my dad had 4 home care visits a day and had the OT and a physio come out to assess him - all of this was free as it was intended to enable him to stay out of hospital and be safe in his own home.
    If not, please contact your local Social Services/Adult Care and let them know that as he lives alone, has dementia and has wandered, he is a 'vulnerable adult at risk and they have a duty of care' towards him, so he needs an immediate assessment of his care needs - explain that you can't remain with him as you have your own family
    I'm so sorry that family visits are so fraught, you do have to protect your children - dementia robs us all of so much - you do, though, still have them as a joy in your life
    Your dad clearly did a good job of bringing you up - you care for him so much - he wouldn't though, I'm sure, want you to feel so burdened - so I think you're right to be looking at how use his assets to support him - maybe what you really need to do is organise a care home placement now so that his is looked after all day, every day; you can then visit and have time to sort out his financial position and have more time with your family
    best wishes
     
  9. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    Thanks everyone for all your replies. It's difficult to type as my tears keep falling on my mobile screen.

    OK - I have spoken to Alzheimers.org who is going to ring me back so I can tackle those questions each and everyone has asked me.

    I sit in my old bedroom and Dad sits watching TV. Wish he was with me in mind. Yep, dad's welfare, safety is most important. I wonder if I am being selfish with regards to his house. My died when I was 12. Mum and dad said when they pass I will have a house for me and my children.

    I have 3 estate agents coming over tomorrow. Thank you so much.
     
  10. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    182
    BRIDGEND
    117

    look this up 117 metel atc .it for pepole weth metel porplams. It can cove you cost for caer homes i have got this for my wife.sorry about the spling im dislx.be strong its haed i know.
     
  11. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hello mydadslife. I think you have now realised , by joining taking point that you are not alone . You will make many like minded friends on this site . It has certainly helped me . My mum has dementia and I live with her . Up until 2 years ago we managed okay but following a stay in hospital , things were never the same . Like you , I very much felt alone . Don't get me wrong I'm not a only child , I have 4 siblings but believe me I was on my own for a long time . I don't feel like that now because I took all the steps necessary to ensure my mum got all the care she needed and I got peace of mind . I applied for 'personalisation' which is a direct payment awarded by social services . They assessed my mum and I and devised a plan of care and awarded the money accordingly , which allowed me to employ a personal assistant who looks after my mum when she is not at her day centre and when I'm at work . She is absolutely wonderful and I know we couldn't do without her . I receive attendance allowance for my mum also . You can also apply for a reduction in council tax if you have this . The first thing you must do , if you haven't already , is contact social services . I don't know where you live but in Scotland you can email social care direct and ask for an emergency assessment . My mum has grandchildren and at first they were a bit frightened of her but we say that 'Grans brain isn't working as well as other people and needs us to help her' . They are much more accepting and want to help . It is very humbling watching them with her ' helping her with things'. Another thing you have to consider if you don't have it , is power of attorney . I really want you to know that it is perfectly normal to feel the way you do , we are losing our parent a bit at a time , but with support and understanding you can both help each other. Wishing you and your dad the very best of wishes . Lou
     
  12. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    Hello

    I have made the calls and I have a person from Home Instead seeing me tomorrow. On Friday I have a person popping over with regards to cares attendance.

    I also am waiting for a navigator? to call me.
    I asked Dad if he knew who I was. He said no. It's breaking my heart. I need to separate my emotional needs and focus on his needs now.

    I have not seen my to young boys for a week and I just need this pain to go. I have read many posts and I am so grateful for all your replies.
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,051
    Yorkshire
    You have been busy - and you sound more positive - you'll get sorted, 'bit by bit' as my dad likes to say :)

    just wonder - I've never done it myself - could you skype your boys?
     
  14. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    Trying to be strong. Skype is a good idea. Never thought of that. Thank you. I am so glad I found this place. Hope one day there will be treated to combat this disease. Just keep crying.
     
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hello there I saw your post this morning but didn't have time to reply so I'm just stopping by to send you a virtual hug x and to say that you have done an amazing amount today well done x

    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it
    http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf


    Try to take care of yourself -- he needs you and your family need you so please try to take some time for yourself - a drink with a good friend who will support you might be a good idea

    x
     
  16. RaspPav

    RaspPav Registered User

    Jan 10, 2016
    10
    Virtual (((hug)))

    I really do send you a huge virtual hug. I know how you must be feeling. I'm also an only child looking after my mum who's only recently been diagnosed. That said she's had diminishing memory for over 9 years so we've lived with no support until diagnosis in March last year. Not that I'm saying we get lots of help/support now but it is easier to progress things & get proper help once you have a diagnosis.

    I wanted to talk about your children. I too have young children (12, 9 & 6), we've always been open about Mum's memory problems & subsequent diagnosis. Admittedly she is not at the stage of your Dad but I guess the children have grown up with it so have asked a lot & we've answered. The result is that they all understand & particularly our oldest really helps & wants to spend time with his Grandma despite the problems that sometimes arise. They don't question the fact that she repeats herself or asks the same question, they just answer it again. They have grown up with this as mum lives above us so it is easier in that respect. If you feel it's an option tell your children what's going on, answer their questions, I'm sure it will help. Your Dad's CPN may be able to help with this too.

    Now about you. Yes your Dad is important but what happens if this is affecting your health? Who will look after your Dad & set up the help he needs? Speak with your GP, they should offer help & regular health screenings. I've been living with this for years but it's only recently that I've noticed the affect on my health. I didn't ask for help I just went to my GP feeling extremely ill, turns out my virus could well be down to ongoing stress, after asking about my lifestyle & then realising who my mum was & that I was her only carer, work almost full time & have 3 kids he said that the stress could be tipping me over the edge. I'm being monitored regularly now & he's said there are many things he can do to help. I felt so much better just knowing there was some help available & he understood.

    Don't go this alone, keep talking, keep coming on here & take absolutely any offers of help.

    Take care & I really hope you can get this sorted out quickly. It is so daunting, there seems so much to do, but as things start falling into place it will feel easier. Do you have Power of Atourney? If not I'd suggest setting this up ASAP. We did Mum's through her solicitor & it's not cheap but I believe there are cheaper online options. It's become much easier to help her.
     
  17. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    I liked your hug.
    Today and now as i type is iving hell.
    I want to share what is happening to me now may help. Seeing my Dad take his trousers off and walk with a coat inside the house is a new one for me. He has started to take rubbish out of his bin and dump it down the road. If I stop him he does not communicate with me. He left the house to go (i assume for a walk) I followed him and he stoped a resident because he did not know where he was and got in their car. He took the bread and covered it with a teacloth in the lounge he just tried to pull the digital box out with wires attached. This is breaking my Heart. He can dress himself but instead of wearing one shirt he puts on 3 or 4 .

    I called out for help, and I am having to make one of the biggest decisions in my dad's life. You can only cry so much. I can't handle this pain. That is when you say enough is enough. I spoke to my youngest on the phone and holding back the tears he asked me in a very grown up way, why I was sad. I told him that I miss him. I then said by and cried my eyes out. My older son is scared what grandad has but his mum explains and he takes it in.

    My Dad asked me in the kitchen what this was. I told him it was a phone. My Dad is a lovely man but he is not the man I know anymore. We have no conecction, no bond and my love for him hurts.

    if you are going through this, you are not alone.

    My journey continues
     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    i do think it would be a really good idea to speak to your gp again and check for a urinary tract infection if he hasn't already been checked but also to get some help for yourself - you do need someone to talk to face to face and starting with the GP would be a good idea and checking for infection would be a perfect excuse for an appointment
     
  19. Dazmum

    Dazmum Registered User

    A big hug from me too, you are really going through a tough time.

    I agree with fizzie, I would speak to your dad's GP as soon a possible and tell him what's happening and that your dad needs help right now. It could well be that a UTI is making him worse.

    If you weren't around, goodness knows what would have happened. When my mum began to wander I talked to her doctor, and completely broke down, I was at my wits end, as you are, and she started the process for getting her assessed. You can't go on like this, and I'm as sorry for you as I am your poor dad. X
     
  20. mydadslife

    mydadslife Registered User

    Jan 20, 2016
    8
    #20 mydadslife, Jun 20, 2016
    Last edited: Jun 21, 2016
    My Dad At Peace Now

    Back February of this year, I was staying with my Dad at his house. It became unbearable. The last week Dad stopped recognising me. He always said that he loved living in this area, and loved his large garden. He said that he was so lucky. He would always repeat this to me well before he had Dementia. I asked my Dad if he loved living here, (his house) he said no. I knew things were changing.

    I would go to bed about 11 and I found my Dad still watching tv at 3 in the morning. He had lost his sense of time. It broke my heart. You never think that one day you will have to say goodbye.

    In the Friday I broke down and through lucky I with the Local Authority was able to find him a place. Yes, it was time that he needed a home where people could look after him. That home was temporary until a full time place could be found.

    That home turned into a nightmare, whereby myself and the Local Authority made a complaint and they were investigated.

    We found Dad another place and I was happy that his needs were going to be met. Dad stayed in the home for about 5 days until he caught Streptococtos B. I received a call from the care home saying that they need to take dad to hospital as it could be life threatening. Dad arrived at Hospital and I was told that it was critical. Part of me knew what I wanted to happen.

    I received a phone call from the Dr saying that they could operate but it is 50/50. I said will he survive, will he live. I was emotional, that I knew my Dad was going to die. He loved me, he showed me and taught me and played with me, 've it Football, Cricket. His time had come. The Dr wanted to know if I would like them to operate. I said that I did not want his Dementia to kill him.

    I visited Dad who was isolated in his own room and had to wear overalls. His eyes were closed and Gus breathing was not what it should be. I met the lady who was looking after my Dad and showed her a picture of him when he was about 7 years old. She started to cry. I felt that at last a person who really cares about my Dad.

    My dad carried on living for another two weeks and on the Tuesday morning I got that call that my Father had died..

    Today, some 5 months later I miss him like crazy. I just want to say thanks to all your replies and life goes on.
    I saved his house, from being sold. I am bitter still on how the welfare system works.

    Take care..x
     

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