1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

supporting family from a distance- the whole story, now what?

Discussion in 'I care for a person with dementia' started by Granddaughter93, Mar 29, 2017.

  1. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Hello all,

    I've just joined in the hope of finding somewhere to talk. My granny has dementia, is thankfully settled in residential care and usually very muddled but happy enough. I live about 170miles from my side of the family so don't see her often, meaning that she isn't often completely sure who I am but does still seem to recognise my face.
    She's my mums mum so she is the main carer/ visitor but I also have a sister with two young children that lives much closer to them than I do.
    What I'm struggling with just now is that my mum seems to find me the easiest to talk to, which I'm grateful she feels she can but it has got to the point that I usually can't face her phonecalls because they are always very negative and upset me. She seems to be in the past still although I left home 5 years ago and my sister even earlier. We lost our granddad (her dad) suddenly 6 years ago and she is still really struggling with everything. We all miss him terribly and it's a sense of loss that my granny is not the woman she used to be either. They were a huge part of our lives growing up and I'm so grateful my granny is still around even in a different way. I love her and all my family dearly, there aren't many of us but I'm feeling under huge pressure to look after them all.
    Recently my mum and sister had a falling out because my sister finds it really difficult to visit my granny and see her changing. She worded it badly and now my mum is really upset.
    I'm only 24, have recently left the military to train for my dream job at uni and with lots of travelling and shift work. I got married 6 months ago and my husband is so supportive but works away and has never encountered dementia before.
    I can't keep listening to these phonecalls and cope with trying to improve my own mental health too (which she doesn't know about) but I don't feel I can tell her. We are all trying to encourage her to get help but she either doesn't or goes back on steps towards help to cope.
    I can't make her get help and she isn't able to see it when I try and give her a different perspective on something so it's not always so negative but I hope I can find somewhere to let all this out because it's starting to get to me and disturb my sleep. I don't want to tell them how I feel because I think it'll only make them worse and upset them more.

    I'm sorry for the essay.
     
  2. Nut

    Nut Registered User

    Sep 30, 2013
    35
    Norfolk
    Hi there granddaughter93, welcome to TP.
    You have all our sympathy. You are at the bottom end of a chain of loss and grief, while having your own life to lead and develop. Dear dear woman, I too lost my father at your age and how hard that is. Your energies need to be with yourself, your university course and your husband. Now you sound a bit like me, thinking of your Mum, keeping stuff from her (I too hid mental health difficulties) supporting her endlessly, dreading phone calls. I know you know she is struggling with losses, BUT she can't seem to see your life standing in your shoes.

    And here's the hard bit. It is entirely possible your Mum is depressed. Leaning on you, not taking in helpful suggestions, unable to come to terms with the loss of her mother and husband. And how to handle and respond? Work out a strategy, work out what you want to say, maybe get the help and support of a counsellor, back up from your other half. Maybe something along the lines of "Mum I love you and always will. At the moment I am studying and struggling and can't give you all the support you need. I love you and always will" ....... (known as the s*** sandwich approach). Maybe also find the courage to tell her about your mental health to help her understand you are not made of stone that cannot break. If you are inclined to protect your Mum from further hurt and difficulty then this will be hard and go against your usual way. But , you have reached the end of your tether with that way of coping with your Mum's needs so something different needs to happen. Sorry if this sounds preachy. Your life opportunities at the moment are too important to be undermined by all this pressure. Wishing you all the best.


    Sent from my iPad using Talking Point
     
  3. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Hi,

    Thank you so much for your message, I think I may have been missunderstood it is my mum that lost her dad and her mum has dementia. She is hugely struggling with this and and a now empty nest and I really think she is depressed but she won't listen to me trying to help. Thankfully she has my dad but even he seems to be less chilled out and broad shouldered than he used to be and I really can't blame him but I worry about him coping with the stress and that it'll eventually affect his health.
    I need to focus on myself just now as I'm not as strong as I used to be but I don't know how to tell her so I avoid calls and don't like to visit too often although I do miss them all.
    It really helps that you understand supporting someone like this and my husband thinks I should talk to her too, something like telling her I can't listen to the phonecalls untill she agrees to get further help. At least by text I can answer when I'm able to (literally and mentally) which does help but she is insistent that text isn't the same and will phone repeatedly until I'm around to chat.
    Did you speak to your mum? How did it go?

    You don't sound preachy at all and thanks again.


     
  4. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Could your 'phone develop a fault for a bit?
     
  5. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    #5 Oh Knickers, Mar 29, 2017
    Last edited: Mar 29, 2017
    Hi,

    I was very touched by your post. I can understand your mum needs to offload. However, as a mum of a child around your age I do feel you are too young, never mind all the other stuff you have going on, to be doing the level of support your mum appears to be needing.

    You have broached this with your mum. Your mum, through depression, is refusing to listen. She has already pushed your sister too far. The other posters have given some good suggestions.

    Please consider phoning your mum's GP up and explain what is going on and how it is affecting your mum. As a close relative you can do this. The GP will not discuss the treatment with you but they should listen. I had to do this when my mum developed an odd display of depression (she developed an strange rash she struggled with) when my dad remarried. Mother does not do feelings so struggled with feeling so fragile.

    Go and do your dream job. You will feel so cross with yourself in the longer term should you not do this. It may be that should you not do this role you will end up huge resentment towards your mum. Go and live your life. Your mum may not be coping - but she is an adult. Leave her GP to support her.

    Get as big broom you can find to wallop the guilt monster and move on. You also may need to consider some counselling of your own for your own issues.It sounds as though you have a lot going on.

    Best of luck.
     
  6. Malalie

    Malalie Registered User

    Sep 1, 2016
    307
    Female
    I'm sorry you are suffering this, and you are obviously so fond of your Granny.

    You are completely right in that this problem shouldn't impinge on your life as much as it seems to be doing at the moment. You are only 24 and you've only just got married. Although you have a wonderful close relationship with your Mum, it's not right that you should be so burdened with it all. I know that you want to support your Mum, and she must be suffering a lot.

    I don't really know what to suggest apart from directing Mum to find support from people who are going through the same situation as she is. People her age.

    Do you think that she would join our Talking Point forum if she is computer literate? We are all welcoming here and lots of us have our loved one in care homes and can give support, advice, sympathy and empathy on just about anything?

    You haven't mentioned if you have a Dad around - if so, could he help?

    It sort of sounds like your Mum needs more support than your Grannie, and I'm sure there will be other people replying who have experienced your situation.
     
  7. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    Additional thought. Phone Cruse - a bereavement charity - and get someone to contact your mum. They may very well be able to provide her with support.

    Tel: 0808 808 1677
     
  8. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Hi,

    Thank you, I had no idea I could do that. We all need her to have the support from somewhere but I know I can't give her what she needs. I will definitely consider speaking to her GP myself to see if that can encourage her.

    Thanks again

     
  9. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Hi,

    I have been trying to encourage her to talk to others (we all have) and she does go to a day thing they used to go to together and that seems to help but it's short lived. It's a step in the right direction but it doesn't take much at all to undo the good she's done.

    My dad is with her and is great but we are close and I know he's finding it increasingly difficult to support her too although he would never talk about it so as not to upset me. I worry that he's under a lot of stress because at least if I really can't face a phone call I don't take it (although I do feel guilty for it)

    Maybe something like this would help. I only joined tonight so I could talk without adding to the situation and it's very helpful. She's really a physically talking type but mabye with some persuasion since there are a lot of people on here that will be able to relate to how she's feeling.

    Thank you for your message. It's appreciated

     
  10. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Thank you, I'll look into that


     
  11. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    500
    Granddaughter,

    You have a good handle on what is going on in your family dynamics. Well done. And well done for being so aware and for being so thoughtful.

    It does strengthen the thought that you need space from this situation.

    See what you can do with the suggestions made and then move on. It will feel tough. However, there are people with the skills your mum needs who will be able to provide the support she needs.

    Thinking of you.
     
  12. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Thank you, the ideas and comments here were what I needed. I need to try something

     
  13. SisterAct

    SisterAct Registered User

    The reason you feel guilty is because you are so caring and thoughtful.
    Have you spoken to your Dad and sister to tell them how you feel?
    Does your Mum have a sibling or close friend that might be able to talk to her or meet up now and again?

    Really good suggestions from people on here for you to follow through.

    Your Mum might still be grieving for her dad as we all handle this process differently and there isn't a time limit on it and she is worried about her Mum now.

    Also you don't say how old your Mum is, she could also be dealing with the menopause, hence the depression, arguments with your sister and her constant calls to you. Some women sail through the menopause but others really suffer. Lack of confidence, depression, tearful, paranoia, sweats and irritability are just a few of the symptoms.
    When my dad spoke to my OH he said " God help you when my daughter goes through the menopause if she is anything like her mother:eek:"

    Thinking of you all xx
     
  14. Granddaughter93

    Granddaughter93 Registered User

    Mar 29, 2017
    11
    Morning,

    My dad knows she talks to me and sometimes uses it to offload and he knows I can't ways listen but I haven't actually told him the extent of it because I don't want to add to his stress and make him feel like he's the only one that has to deal with it. I'm close with my dad but it means I see that he's affected more than he used to be and I worry about his health to be honest under that pressure, working lots of hours in a sedentary job.
    I'm pretty sure my sister knows that she comes to me because she has two young kids and a lot going on too. I do talk to her but only the odd catch up by text unless go to visit. She's obviously finding it difficult but trying not to show it because of the kids but that resulted in an argument at the weekend so I got a phone call.

    She does meet up with the odd friend now and again and picks up a little but it's very short lived. My dad usually texts me if I ever ring her and says it's really cheered her up. He asked if I could call every week but I sort of avoided a direct answer because I want to help but I can't cope with that every week on top.

    My mums 56 and I'm sure there are menopausal symptoms in there too and she knows it because she knows she's struggling and tells me that. I just hope she does something about it today (she has an appointment, but this has happened multiple times and she goes back on it) because I really don't want to have to tell her how I feel because it'll only upset her and add to everything.

    I'm completely stuck but I have to look after myself too. Thankfully I've got a few ideas from here so I'll wait for the outcome from the appointment and I might just have to do something myself.

    Thank you for your message. It really helps that people here understand and can see things the way I do

     
  15. Rosnpton

    Rosnpton Registered User

    Mar 19, 2017
    394
    Northants
    Supporting family from a distance

    Hi
    I'm the same age as your mum and been going through menopause for last 5 years. Coping with my mums full blown az. (Now in ch)and dads mild dementia (in own home close by) and the emotional ups and downs associated with hormonal changes made me extremely irritable needy emotional and resentful.
    It took a while for me to recognise I needed support as well as I was becoming the sort of needy individual I used to mock (only in my head) as not coping with life.No one knows what others are coping with behind closed doors and I now regret even thinking rotten thoughts. My two daughters 28 and 24 don't live that close, but we now have an agreement of one call a week to me. I can have a 'short' moan, and the we must be positive and discuss happy stuff.even if only what we had for tea/watched in tv! In the meantime, we have a family email thread where we put what's happened at ch/other family see it too/and if here is a real 'emergency' an urgent message is flagged up. They know this will only be a real problem and something they need to know.
    That way they are in the loop regarding grandparents health etc,I know they are supportive of me, but I'm no longer off loading directly on to them.
    Took a while to recognise what a nuicsence my own behaviours were becoming and accept the coping mechanisms suggested by my gp.and family,but several weeks down the line it is slowly working out better for everyone.
    Make sure you get enough time for your studies and own family
    Thinking of you
    Ros
     

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