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. Travis95

    Travis95 Registered User

    Aug 1, 2019

    I am 24 and my mom (56) has Alzheimer. She was diagnosed about 1.5 years ago, but I thought its merely a description for bad memory, so I didn't worry too much about it. About March this year, she was diagnosed with depression and that made me burst into tears and essentially made a huge U-turn in my life.
    I was actually an international student in the UK, already secured a Graduate job with one of the biggest company before the diagnosis. Sometimes also referred as the ultimate role model in my uni or employers.

    All the children are studying aboard and achieving good things, but mom was lonely at home in my home country, together with dad (she doesn't like him too much). We believe loneliness is what caused her depression. It took me about 2 months to decide to drop off everything I achieved in the UK and return to my home country, thinking my presence itself can make her feel happy and slow the progression significantly.

    It is one week after I returned home, she is aware of my presence. But now I learnt that I didn't make any difference, it makes me feel very sad. Sometimes I question myself why did I even give up everything I achieved in the UK, I lost everything. Every time I see her confused, it is heart-aching. "DO SOMETHING! SAVE MUM!" reads in my mind, but the reality is that no matter what I do, the effect won't be very significant.

    There might still be a chance to return to the UK and pick back the job if they haven't found a replacement. But I see this as a very selfish move, it makes my dad handle everything alone and I am escaping from reality. The dilemma is:

    if I stay home: I can't do much anyway, but MAYBE I am actually helping just by my presence. I still have a good graduate job here, but my life won't be as luxurious as living in the UK. But I can't do much besides watching her going slowly. This is very sad, sometimes I want to hide in my room and cry.

    If I go back to the UK: I am escaping from reality - hiding the problem. I stop reminding myself of the problem because I can't do anything, but who knows I am unconsciously making it worse by not being with her? Also, I am making my dad handle everything alone, the worst thing is one day he will stress out and that is very damaging to his mental health. Even a few weeks before returning home, I get reminded of my mom and get extremely upset - meaning I can't hide either, it will still haunt me wherever I am.

    At the time being, I am doing a lot of research on what can I do to slow the progress, including getting her the right nutrients. I know it takes months to see some effect, but I might see disappointment too, and that will probably crush me even harder, thinking I failed. But I can't do nothing now!

    We are looking to enroll her into a local Alzheimer club, overlooked by trained nurses and engages Alzheimer patients with group activities. I hope the social engagement helps my mum.
    Speaking to one of my friend, the advice is to spend the remaining time with her. But it feels very sad witnessing my loved one going slowly but I can't do anything about it. Why must I watch this?

    How should I proceed? I am constantly depressed...
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I’m sorry you are feeling so torn & upset @Travis95.
    Why don’t you talk to your Dad & see what he thinks is best. Could you & your siblings spend holidays with your parents?
  3. Travis95

    Travis95 Registered User

    Aug 1, 2019
    I didn't bring up to my dad, the possibility of going back to the UK. As a father, he would definitely ask me to chase after my dreams and not to worry about him - I know this is not true, which father would admit their sufferings? I want to protect him too.

    My parents actually came to the UK for my graduation and it was really hard. Mum doesn't realise she is no longer at home, she thinks my uni flat was her home and attempted to find things that were at home, but not in my flat. Bringing her out from her routine environment is very risky because there is the risk of her wandering away.
    It was very tiring to make sure she is with us every time we go out, we don't really get the chance to explore because she will complain about anything and wants to go home. I'll rather not go for a holiday.

    I had to sleep at the door to make sure she can't leave without waking me. I remember staying in the flat with her, seeing her trying to tap anything on her smartphone. It was heartbreaking, she lost consciousness or the ability to think.
  4. KeddyL

    KeddyL Registered User

    Jun 8, 2014

    What a difficult time for you. I'm so sorry. I'm Laura. 27. My mum died from advanced Alzheimers this year. I just wanted to drop you a message.

    Firstly, huge congratulations and well done for all your achievements. I'm sure your mum would be extremely proud of you. Your dad too.

    I wouldn't like to influence any choice you make but maybe help you look at it a few ways (some from experience)

    I can see why you maybe unsure about a conversation with your dad in regards to what to do. As you say he will, of course, want you to follow your dream. Would your mum want that for you too?

    In hopefully many many years to come, when your mum has passed away. If you stayed with your mum and dad, would you be happy that you made that choice? Or possibly regret it?

    If you where to decide to come back to the UK, are you able to set help up for your dad first to maybe put your mind at ease a bit that your dad is still having some respite?

    You're own state of mind is very important to. I remember feeling I needed to be around my mum alot so she didn't forget me. Unfortuntely it was out of her control and she as expected. Did anyway. The worst part for me, as I watched her take her last breath was that I never could of saved her. No matter what.

    I went and achieved my own goals throughout my mums 10year fight. I look back and know she would be so proud of me. Its potentially helped with ny mourning too. Do what your gut is telling you. The choice that you would be happiest living with.

    I'm always here to talk should you want somebody. Let me know how you get on x
  5. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    Central Scotland
    Travis, I am a 73 year old mother of two, clever, successful, hardworking Daughters, who are now raising their own children. I do not have Dementia but my Husband has, now quite advanced. All I can tell you is that I have devoted my life to raising, providing for, supporting my Daughters (as did my Husband). Husband is oblivious to the wider situation but I know that if he were aware, he would never, ever want our daughters to sacrifice all that they have achieved to look after him. Sadly, he does not recognise them when they visit and they have realised that there is little they can do to improve his situation, other than ensure he is safe and being looked after well by professionals in a care home.

    I have insisted to my daughters that if I should develop Dementia, or similar that they must find a good care home for me and get on with their own lives. My own life would be pointless if I eventually became a burden which destroyed their happiness.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    You cannot prevent your mums decline, although I understand your desire to do so. Dementia makes us feel helpless in the face of such enormous changes and we want to hang on to what there was and to stop further change, but its like shouting into the wind or trying to hold back the tide. You also dont know how long this will go on for - it may be many years yet and your life will have passed you by.

    My OH is in cognitive decline (no diagnosis yet) which started while our children were at uni. Our daughter is now 30 and I would not have wanted her to give everything up. She has actually had counselling and were are able to talk things through now, so, yes, I too think that counselling would help. Our daughter is in UK, but a long way away so she is unable to visit often, but she phones and visits a few times a year. When she comes she helps me sort some things out. She was here last week and she took OH and I out for a couple of hours - not doing anything exciting as her dad cant cope with that now, but a nice gentle outing with ice-cream that gave me a break. She also cleaned the kitchen out thoroughly and helped me sort some stuff out for the charity shop which she then took there. They sound small things, but they really helped..

    Keep in contact with your dad and make sure that he gets as much help as possible and then go and visit and do things that may seem small, but will help your dad.
  7. feinn

    feinn New member

    Jan 7, 2019
  8. feinn

    feinn New member

    Jan 7, 2019
    I feel awkward replying to such a personal post but I feel a connection as my wife is 59 and also has progressed from an MCI diagnosis to an ever worsening Alzheimers. We have two sons both with successful but very busy careers, one in another country. We wouldn't want our troubles to mar their lives more than they must. It would have appalled my wife if they were to sacrifice their careers to support us and that would make the impact of the disease even worse.
    I suspect your Mum would have felt the same and would have told you to get on with your life. As parents our proudest achievement is a better life for our kids.
    You know her best but it sounds like she did her best to get you that better life, so don't feel guilty about honouring what would likely have been her wish. Phone, skype, send cards and flowers. Visit when you're able and lend what support you can from a distance.
    I bet that is what your Mum would want.

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