Trying to accept why at 25 I have to deal with my dad having early onset alzheimers

Discussion in 'Younger people with dementia and their carers' started by Naomi25, Mar 5, 2018.

  1. Naomi25

    Naomi25 Registered User

    Mar 5, 2018
    11
    Female
    My Dad has recently been diagnosed with early onset Alzheimer’s. Although I felt like I could see this coming for a while I still can’t quite get my head around things.

    I feel angry and frustrated as well as the obvious sadness. Alzheimer’s has only been something I have ever known people in their 70’s or 80’s to suffer from. I feel like my dad has been taken away from me. As someone who I grow up with working so hard to provide for our family it is now very difficult to speak to him for him to hardly be able to string a proper scentence together. I find myself being short with him even though I don’t mean to be. I just feel like I can’t cope or handle it very well.

    I feel selfish when I think about what I am loosing because of this and how I act around him. I want to support and be there for him but at the moment I can barely stand to be around him which makes me feel like a horrible daughter.

    Has anyone else had similar feelings? Or any advice on how to deal with the situation? I know how sound like a really horrible person. I feel like my instant reaction to dealing with it is to be distant with my family almost putting my head in the sand.

    It would be really good to speak to others in the same situation, wishing you all the best and my thoughts are with all other people in this horrible situation.
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,992
    Male
    Bristol
    Hullo and welcome to TP, Naomi.
    You are not horrible, your feelings of wanting to escape are normal. The feeling of hopelessness and isolation is one most carers deal with at some point. For me coming on here and venting frustrations, getting advice and support have been a lifeline, so you will get plenty of both. Our local carers centre provides information and groups where you can talk to others in the same boat face to face which also gets you out of the house. You should find something in your area at
    https://carers.org/ cares trust

    Have you read the compassionate communication guidelines, not always as easy as they seem on bad days, but may help you deal with some situations. There was a thread discussing it on
    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/.

    Best wishes.
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,586

    I cannot imagine what it would be like to have to cope with this at such a young age. You are not being selfish at all and I can promise you that the feelings you have are perfectly normal and being short with him is also normal. I look after my dad but he is 88 and I am 61 I suppose I have had my best years but I still resent the fact that this has happened to dad and to me also. My life revolves around dad and it is just not fair.

    You don't say whether you are still at home or if your mum is coping on her own and you are helping her. It would be useful to know a little bit more about your situation.

    Please feel that you can come on here and say whatever you want and someone will listen to you and give you some help or support.

    Try not to feel guilty or horrible because you are not. You are normal and you did not expect this to happen.
     
  4. Oasis2

    Oasis2 Registered User

    Mar 5, 2018
    12
    HI I'm new to this as well, I'm 34 and my mom has dementia, she is now 68, she was diagnosed with it when I was 27. My mom is now at the final stage bed bound and very poorly. I still have the same emotions as I did when she was first diagnosed. I have waves of emotions, I'm so angry at times and I know there are people worse off than me. But it doesn't stop the pain of why me, why my mom. I had a slight melt down yesterday as mothers day is coming up, I'm a mom myself, but i hate mothers day, as what do you buy or do for someone that is just a shell and no longer them, she's just existing. The frustrating thing for me is that I can't remember her voice as she has been mute for so long. I wouldn't wish this cruel disease on anyone.
    The answer to your question is your not a nasty person, your human, your grieving .
    I hope this has helped. It's nice to hear that other people feel the same as I do.
    Take care and love and best wishes to everyone out there dealing with this cruel disease
     
  5. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,302
    Merseyside
  6. Trapisha

    Trapisha Registered User

    Nov 28, 2017
    135

    Hi Naomi I know exactly what you are going through my mom was diagnosed in july and
    i was so angry and upset we used to be very close i would tell her all my problems and
    she was my best friend.I get angry that she can't remember things that has only happened
    an hour ago and then i am upset with myself and guilty for being annoyed. I hate going
    to see her because I'm afraid i will have something else to worry about and i feel guilty for
    not wanting to go. my mom is 86 and i feel like this, so its understandable how you are
    feeling with your loved one being so young life is just not fair xx
     
  7. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    79
    I feel the same all the time, why me, why her. I’m 33 and my mum is 69. I can’t say that feeling ever subsides. I think there are two categories of problems the relatives of dementia suffers have; the emotional and the practical. There’s no cure really for the former, as dementia is utterly heartbreaking, but for the latter management, clear thinking and organisation is everything. I wish I could properly remember some of the conversations I had with my mum but it makes me so sad trying to. Also, as my mum’s state has got worse I’m finding it difficult to keep hold of the previous, entirely positive way I saw her.
     
  8. Trapisha

    Trapisha Registered User

    Nov 28, 2017
    135
    Yes me too i am starting to forget the normal mom i had and its awful i feel very sad thinking
    about how she used to be hope you can have some good days xx
     
  9. Em17

    Em17 New member

    Mar 8, 2018
    19
    Female
    Completly understand, im the same with my dad. I banned him from coming along to things like parents evenings and whenever im asked to go to his i refuse as it makes me feel uncomfortable being around him for a long period of time. It does make me feel awful not wanting to go and see him but i think its made me realise that im just trying to avoid seeing him in his extra care accommodation as i know for his age he shouldnt have to be in extra care and makes me feel bad for him as all he has ever wanted to do was work and support his family, which has now been taken away. I do lash out and get angry whenever he makes comments that are rude and frankly embarrasing and its hard for me to keep quiet and tell myself that its the disease thats doing it, its not his fault. I am very distant with my family apart from my brother as he is a similar age to me and we are very close. Even thought it was nearly 3 years ago that my dad was diognosed its not something i have come to terms with yet which i know is perfectly fine and normal. Wishing you and your family well
     
  10. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    Hi
    Naomi I completely understand how you feel my mum was 56 when she was diagnosis with FTD and I was 24 I did bury my head for a long time often said mum had brain injury not dementia etc, I wouldn't talk to anyone about her or became frustrated when people asked about her ( all good intentions) was just me blocking ti all out. However now 3 years on I will talk to anyone that will listen about her to raise awareness and spread that knowledge and our experiences as a family. If you want anyone to talk to please let me know.

    Sara
     
  11. 123is321

    123is321 Registered User

    Jan 5, 2015
    8
    Liverpool
    Hi Naomi, I'm 23 and my dad is in the final stages of EOA. For a long time, I regretted the way I acted towards dad in the early stages of his diagnosis, I was super intolerant and embarrassed by him. This is incredibly normal, this diagnosis affects the family members in a way nobody can understand unless you've been through it. You are coming to terms with it too. There is no set way to deal with it, but it helps to be open with your family, tell them how you feel and I can pretty much guarantee that others are feeling the same.

    If you want to chat or vent or reassurance that you're not alone, feel free to send me a message.
     
  12. Amy123

    Amy123 New member

    Aug 16, 2018
    2
    Hi I’m 28 and my mum is 61 in the later stages of early onset Alzheimer’s.
    Over the past year she has declined rapidly, which I think was prompted by having to have a cancerous kidney removed (the doctor said 2 nights in hospital which turned into nearly 2 weeks). Before going into hospital she could still hold a conversation and I was able to take her out for a couple of hours, after she could barely walk and needed support from home carers which was a really difficult time as the recovery we were expecting didn’t happen and she needed increasing levels of support. My dad had already taken redundancy to care for her but I was and am still working full time with my own house to take care of.
    Now she is in residential care part of the week in a really nice place and at home with my dad with the support of carers part of the week. My dad is fantastic with her but was struggling with being a carer 24/7 even with support from home carers and myself. This shared care solution has worked really well in that she still spends time in her own house without it feeling like a burden for my dad or myself so we can enjoy the time spent with her more.
    I wish I could do more to help but I work 6 days a week and find the emotional aspect of visiting very tiring as well. At the moment I go three times a week (twice at home and once at the care home).
    As she has declined I have always been able to count on her smile when she sees me and know that she recognises me and is glad to see me (her only child). Over the past couple of weeks this is no longer a guarantee and I am struggling with this. I know it is to be expected as she nears the end (doctors have given 6-12 months) but it still seems like a huge milestone.
    Sorry this has turned into such a long post!
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hello @Amy123 and welcome to Talking Point. The decline is always sad to see. My OH is 62 and our children are 28 and 30. Most people think that OH is well into his 70s.
    Im glad that the care is working out well. It is lovely that you are able to visit so often. It is sad when you no longer get the smile, but sometimes it can take them longer to work out who you are. Also - near the end they lose the actual ability to smile and can only grimace, so if you see her grimacing when you arrive - take it as a smile.
     
  14. Amy123

    Amy123 New member

    Aug 16, 2018
    2
    Hi Canary
    Thank you for your kind words. I will keep that in mind. I feel like it has helped a bit just getting things out of my head and written down.
     
  15. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    169
    Male
    Liverpool
    I can relate to a great deal of what has been said in this thread, we first started to notice that things weren't right with mum when she was in her late 50s. It wasn't until she was 67 that we had a formal diagnosis. Initially we were told that it was mild and nothing to worry about, but of course over time there were more and more incidents, such as forgetting appointments, taking 3 hours to do a shop that should have taken an hour, trying to drive to a location she had done thousands of times and having to come home as she couldn't remember the way. She's 71 now and hasn't really been able to enjoy her retirement in the way many people have. I do feel angry, even now that this awful disease has taken so much from mum and from me as her primary carer, so soon! How dare it! Talking point has been a great help though, its always helpful to know that others are experiencing the same. As others have said, talking point does seem frightening at first, but there is always support here.
     
  16. Clonk59

    Clonk59 New member

    Aug 28, 2018
    6
    Hi I’m in exactly the same position as you but am twice your age and a bit more. I also can’t bear to be near my father at present. I have so much resentment and sheer rage that I fear for my own sanity at times. You’re not a horrible person, neither am I, but I guess at some point we will both have to achieve some level of acceptance in order to function properly and try to be the best we can be in the circumstances. Sending you a hug.
     
  17. Amlama88

    Amlama88 Registered User

    Feb 13, 2017
    46
    I completely understand how you feel. My dad was diagnosed when I was 26 and was suffering a while before that. I am 30 now and my dad is actually in hospital as I type this and unfortunately isn't going to make it. I am sad knowing I won't get to share special moments with him like having children with my husband, his retirement, family holidays etc. Stay strong and keep your good friends and family close xx
     
  18. echoing_green

    echoing_green New member

    Jul 8, 2018
    8
    Hi there,
    Completely understand your and everyone else's position on this. You are not a horrible person, and this is a process for everyone. I am 35 my dad is 65 and was diagnosed with EOD 5 years ago, though in retrospect it was there way before.

    We all have bad days and think of the what-ifs and I personally think of all the things that we will miss out on and for me what has been hard has been the reversal of parent-child relationship I feel I have no one to turn to and my mum relies on me for advice and practical stuff which is difficult and alot of weight to carry as I live far away.

    For me what has helped has been mindfulness and meditation which has helped ground my emotional reactions to things. I also focus on the practical things, force myself to be busy and outwardly positive. I personally found counselling very good for reconciling my feelings and talking to a stranger helped, but experiment and do what nourishes you, maybe write down all of your frustrations, or do something that forces your mind to focus on something else, exercise is good for that.

    Also now I don't wait for things to happen, save something for a special time, every day is special. I try and celebrate the strengths of this journey, my mum is taking on things she never thought she could do and getting confident in areas and pushing herself out of her comfort zone.

    It's hard and there will be bad days. The first time my mum told me about an incontinence issue with my dad had I was strong for her, sorted out getting specialist bed sheets and referrals etc but alone at home I cried because I don't want to see my dad like that and I don't want to see him weak. When friends talk about family celebrations and dinners I smile and ask the right questions knowing that something simple like that to too stress-inducing to even imagine doing when my dad has 6 pieces of cutlery of the plate when he is eating and doesn't know what day of the week it is. But there are moments when I see him and he is still there, being un-PC or questioning my actions. Loss and mourning is always difficult, but strung out like this is cruel and hard for everyone involved. Just know there is always someone to talk to here.
     
  19. cath1124

    cath1124 New member

    Feb 26, 2018
    9
    Hi, I feel like I can relate a lot to this thread. I’m 20 and my dad is 59, he was diagnosed in November last year, and recently I have found myself having much less patience with him as he has declined some in the past couple of weeks. I think I snap sometimes because I’m angry. Not at him but at the situation and then I feel so guilty I cry every night when I’m alone. It’s a horrible horrible feeling but I can’t help myself sometimes
     

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