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Topic: Trouble coping - Early Onset Alzheimers

7 posts, 0 answered
  1. BPscully
    BPscully avatar
    4 posts
    22 May 2021

    Hello there,

    Since last year my mental health has been spiralling downwards.

    7 years ago my mum was diagnosed with early onset alzheimers, I'm 28, my mum is 68. Mum was a very positive and happy person first 5 years, now these moments are sporadic. I know at some point in the day it's going to be difficult, it's unpredictable when. Moods range from happy to manicly upset/depressed/irritable.

    Mum defies my help a lot now even though can't do it alone, it's been such a struggle getting her to do daily necessities without becoming bigger then it is. I have to expect the worst. Everything I do is to help her, I get so upset because my help is the enemy. I'm starting to show it infront of her because I'm just really all over the place myself, becoming unpredictable with my patience. I then feel very upset because I don't want to ever make her feel like any of this is ever her fault.

    I have 3 siblings that don't really pull their weight, I am the youngest and they always wait for me to ask when they no I'm struggling. So I just struggle on and do my best because it's easier for me to rely on myself. My partner helps me more then my family, and I love him dearly for it, but feel guilty for it too. I don't think they know how I feel but they also know how bad mum is-they'd rather turn a blind eye. It frustrates me that they talk to me about all their problems and tell me how tired and busy they are and ignore that I have a job, I'm a full time carer, and I also have been living at home since mum was diagnosed (I also make sure to help with bills, groceries etc) . I've giving up my social life and reduced work because I love mum and I have trust issues with my siblings. Luckily on a Wednesday I have a lovely lady come over and spend time with mum for a few hours, they have built up a beautiful friendship.

    My dad also had a stroke last year, I'm trying to go over as much as possible to see him, but it is hard to try and be there for both of them equally. I'm trying to get supports into place so he has more avenues for help, as he is older then my mum and currently has a walker. My brother tries to go over as much as he can but struggles with his own mental health issues, and my sister and him had a fight and she was his carer (they haven't seen or spoken to each other in over 6 months).

    Honestly I'm just trying to be really strong and keep calm but I'm a ticking time bomb. It would be good to find some people with the same issues to support each other.

  2. missep123
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    missep123 avatar
    845 posts
    22 May 2021 in reply to BPscully

    Hi BPscully,

    I am so sorry that you have been going through such a difficult time such as this. You really do sound like such a kind, caring soul. I can see that you care for your mother a lot and I know that it must be so difficult especially with Alzheimer's and the changing from her usual sunny personality to irritable or depressed.

    From my experience I used to study psychology and I don't know if it might be helpful for you but I have previously heard that there have been support groups around for carers or family members with those of Alzheimer's. I think that a lot of the time we pour so much from our own cups that we forget to refill them. I hope that analogy makes sense! Basically we are pouring our heart and soul into taking care of others that we can feel drained and upset. Being a carer for someone with Alzheimer's is definitely not easy and I can't even begin to imagine what you go through on a daily basis. I really hope that you can find support for yourself because I do hope that it can make you feel better.

    Please keep us updated on how you go, you are definitely not alone! I think also in time more people will post on here with their own personal stories which I hope will make you feel supported too!

  3. smallwolf
    Community Champion
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    smallwolf avatar
    5771 posts
    22 May 2021 in reply to BPscully

    hi and welcome to the forums ...

    My dad was recently diagnosed. he also has Parkinson's and hearing issues but that is another thing. He has been taking medication for Parkinson's and alzheimers. At the moment things are "OK". Mum and dad live in a granny flat at the back of my brother's place. Mum is his main support. I try to speak with mum weekly to touch base and we talk about about an hour or so

    My grandmother (dad's side) also had alzheimers. I am not sure of when the decision was made to move to a retirement home. And yes, this was and can be expensive.

    I don't know what things will be like in the future or how I will react.

    When you look at the person who supported you when you were young. That person who would give you advice when you needed it. And now a shell of that former person. (This is just how my mind thinks!)

    I can see in your writing how much you love and care about and for your parents. At the same time you also have a life and need to have some way of remaining healthy vs running yourself into the ground so that you cannot help at all. When mum and dad would go to the doctor, the GP always asked how mum was coping ...

    I could go on... what I will say is that if you want to chat here I am around. There are also support groups on facebook. There maybe groups in your local. As I said... if you want to chat here I am around

  4. BPscully
    BPscully avatar
    4 posts
    22 May 2021 in reply to missep123

    Thanks so much for your response to my post and for acknowledging my love and support for my mum, it does mean a lot!

    I do have to keep reminding myself that that her happy self is her real self, and her irritable self is a part of the disease. She's not only my mum but my best friend and when we're both happy it's so good.

    I do have to make more time to do this, to get together physically with others, so thank you for expressing the importance and help it could give to collectively talk about our experiences. One time I came across a girl on a Facebook group I was in that had the same situation, same age- and I kick myself for not reaching out to her.

    I do worry that my draining will become my down fall so I've got to take the time to do these things and push others to help out so I can get help!

    Thanks again for your help and support.

  5. BPscully
    BPscully avatar
    4 posts
    22 May 2021 in reply to smallwolf

    Thanks so much for your heartfelt and personable response. I'm sorry for what you are going through also. It's really hard to see someone change infront of you and sucks when you have to make hard decisions on behalf of them. It's hard as a child as well, because it almost feels patronising.

    The whole idea of retirement home is just hard for me to grip with. Mum is just so young and I feel guilty thinking of her going anytime soon. But sometimes with some things I'm like if it got any harder I just don't know how I could deal with it. A lot of learning how to manage these situations has come from trial and error self learning.

    TThat's a very interesting perspective and tip about shell of the former self! I think I might take this on board and see if it helps. She has taught me a lot so I'm sure it I regurgitate what she has taught me it might respark some positive thinking.

    Thanks for your message, it's been very good to hear of someone going through similar issues and finding ways to navigate the inevitable.

  6. missep123
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    missep123 avatar
    845 posts
    31 May 2021 in reply to BPscully

    Hi BPscully!

    I hope that you have been feeling supported here on the forums! It's so nice to see us all connecting to be here for each other!

    I can honestly truly see how much that you care for your mum and I think that is a great way to see it: the happy parts are your mum's true self and the irritable parts are the disease.

    I personally have found Facebook groups very helpful and 'normalise' what we go through because it can really feel as though we are going through such a tough time completely on our own. Please tell us how you go! I hope you can find a support system.

    I think that's a great idea to make sure to focus on yourself too, incredibly important especially in this situation.

    We are definitely here for you!

  7. Girlfriend1
    Girlfriend1 avatar
    3 posts
    16 July 2021 in reply to missep123
    Hi I'm sorry to hear what you are going through. I work in a nursing home and it is a big job being a carer physically, mentally and emotionally. Have you thought about getting a home care package for her or having her go into respite care for a short time so you can have a rest?

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