rant - emotions really hitting home today

Discussion in 'I care for a person with dementia' started by leslyz, Nov 17, 2019.

  1. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    I hope this doesn't sound too self pitying but I need to get this off my chest. When I read the threads in this forum, I think my situation isn't as bad as others but this weekend has been particularly hard emotionally. I feel so sad at my mum's situation, the grief and anger about this ******* illness is really hitting home today. I can't seem to stop weeping - I know this is all par for the course and it's no bad thing to have a real good sob and sort of get it out of your system but life has to go on and I have to be strong for mum.

    Mum is in another town 100 miles away and she moved into the care home after having a bad fall in February resulting in a huge deterioration in her mobility. She's recently had a needs assessment and its clear she needs 24 hour care and wont be going home. I've been through different stages about whether she should stay in this particular care home as there were a few issues and I was even considering moving her down here to be closer to me and looked at 2 care homes in her area and 3 down here but lately I've thought she seemed a little more settled and she seems to be getting on OK with the carers and the home is somewhat familiar to her now (after 8 months) so I've have been worried about disrupting that. I met with the social worker and the manager the other day and we are communicating a bit better and I've definitely observed that mum seems more settled. The home is not perfect but perhaps overall its probably "good enough" but I don't know if I'm doing the right thing or should move her as mum is still wanting to go home. Mum frequently denies she lives there, she believes she has actually bought the place and that it "used to be a care home but isn't now" or that she works there and definitely doesn't sleep there, but at other times will tell people to "get out of my house", so at some level she must perceive she is at home, she definitely thinks her bedroom is hers.

    When she gets so upset and wants to go home and insists she doesn't live there and wants me to take her home, I can't bear to see this distress, its so cruel this illness. She clung onto me yesterday weeping and in despair and I just had to be so strong and tell her she was ok and try not to cry myself. Its torture seeing her in this way, it feels like a trapped animal that we are trying to tame. Then at times she will have this insight and start crying or getting angry. I still don't know if its to do with this particular home and that she would be like this wherever she was, maybe they are not comforting her enough when she's distressed or don't understand her enough. It's so hard, there's never going to be any exact right place and if I moved her to an all singing/dancing home where there was more going on, no doubt there'd be something else that wasn't right and should I even put her through all this??. As you can see I am confused and anxious about whether I'm doing the best for mum. Unfortunately there is just me and no other family. I see her every couple of weeks. I stay in her house and visit her in the home, it is not great as being in her house when she isn't there feels weird and god knows what I'll do at Xmas. The emotions go up and down, this weekend was just particularly challenging.

    I know its ok to post on here but I still feel guilty as I know others have to deal with their loved one on a permanent basis and its a relentless journey - I'm full of admiration for those who are still living with their relative, at least I don't have that though the emotional angst is constant. Please forgive the self pity, it has helped to just put some of this down. I've been writing in my diary and drawing/scrawling my emotions as best as poss, but only people who look after a PWD really understand. Thank you for this space.
     
  2. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    61
    My heart goes out to you, you're doing the very best you can and as you say, dealing with this condition is such an emotional rollercoaster. Please don't beat yourself up, you're making sure your PWD is safe and cared for and that is the right thing to do. My mum has recently started the thing about wanting to go home, she was in hospital when it started but it's carrying on now that she is at home. It's her childhood home she's thinking of, I know because she mentions the street name a lot. She's unhappy because she knows things aren't right but can't understand why. I think perhaps that's how it is for your PWD . We want to make it right for them and sadly we can't, and that gets to me too. Sending virtual hugs.
     
  3. leslyz

    leslyz Registered User

    Oct 24, 2015
    214


    thank you so much CardiffGirlInEssex, it is such a help to have this rant heard and I know that is exactly what it is, a rant of despair. thank you.
     
  4. silkiest

    silkiest Registered User

    Feb 9, 2017
    80
    So sorry to hear of your worrying times leslyz. As Cardiffgirl has discussed 'home' is often somewhere or somewhen that our PWD cannot return to. I think you need to look at what would make your role as a carer easier as much as anything else. Remember we are non of us getting any younger. Is the 200miles round trip difficult and becoming too much for you - if it is it would be better to think of a move for your mum sooner rather than later. I remember the admiral nurse saying to me - this change you are worrying about will become the PWD's new normal very quickly - which it did.
    Sending you virtual hugs. Good luck in whatever you decide
     
  5. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    51
    @leslyz it's not self pitying at all, you need to get this off your chest. This disease is horrible. You are doing the best you can and you are doing it for the right reasons. My mum is in a home now and she is mostly ok, but she has certainly had times when she was crying constantly and she was put on some anti-depressants. Sometimes she refers to the home as "school" which I think is a good thing - she used to be a teacher. All I hope for with her disease is that she can enjoy some of her life on whatever level that is. I know how you feel about staying in her home when she is not there - I did this in my mum's house before it was sold and it was so quiet, and so weird with all her things around. I don't really know where my mum is now.

    I'm sure your mum would want the best for you and for you not to be worrying all the time about how she is - but that's easier said than done. Be kind to yourself. xx
     
  6. myss

    myss Registered User

    Jan 14, 2018
    383
    @leslyz You have nothing to apologise for. I'm just sorry of the push-and-pull feelings you're experiencing.What you mum would probably like to be 'put right' is most likely in her mind due to this awful illness. You know that if there were any other way for your mum to be in better or comfortable position than she is now, you would have done so.

    In a sort-of selfish way, I like it when people have their rants as it reminds me that it is not surprising or unusual for one of us to want to have one, how healthy it is to have one and that there are others who are feeling the same or similar to how I most likely do. All the best to you xx
     
  7. leslyz

    leslyz Registered User

    Oct 24, 2015
    214

    Thank you I so appreciate your comments. Moving her nearer isn't completely out of the question though it's about double the cost down here but I think its about me coming to terms and accepting this whole horrible scenario. I think thats what's causing me the angst. So kind of u to reply. X
     
  8. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    Thank you, it us helpful to hear all these kind comments and to know you aren't alone with the worries. You r right, mum would not want me to b worrying - it's so hard though isn't it? Thanjs so much for replying. X
     
  9. leslyz

    leslyz Registered User

    Oct 24, 2015
    214

    Thanjs for this it makes me feel that it is OK to be angry and sad and scream out at the world and you have reminded me that it is also normal and healthy. Thx v much for commenting I appreciate all the comments it is a great community. X
     
  10. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    Thank you for responding to my plea for help I do feel a bit calmer by now though exhausted. Getting on line to the forum and even doing a few of the word games today has helped. Reading and sharing in some of the other threads also brings things more into proportion, we are all doing the best we can but it's damned hard and you have to reach deep into your emotions. No wonder we wobble sometimes. Am trying to get the balance between being "kind to myself" but not being self pitying and I guess this is all about being a human. We can only ever do our best.
    I've tried to reply separately to all comments not sure if it's worked but thank you to everyone whose taken the trouble to reply.I appreciate the comments so very much. Xxx
     
  11. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    470
    Bedford
    Thank you for posting and sharing particularly the above. It has made me think I am trying to make Mum’s CH perfect for her so she will be happy again but as you said there will always be something that is not right. So you have brought a perspective to my world. Thank you
     
  12. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    Hi Bikerbeth, thank u, its good to know even when u feel like **** and share a huge rant, it might still somehow offer some meaning to another. Amazing! . And u commenting here has reminded me of ur helpful reply to me in my thread about whether to move mum nearer to me so thanks again.
     
  13. sausagedog

    sausagedog Registered User

    Aug 22, 2019
    44
    I hope you’ve had a better day today - you’re doing your utmost for your dear mum, what a lovely daughter she has in you - difficult times indeed & can be so very upsetting. Please look after yourself & there’s much support on here at any time
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,896
    It’s a no win situation my lovely. Dementia takes its toll not only on the PWD but their loved ones as well. The rollercoaster of emotions is heartbreaking at times. (((((hugs)))))
     
  15. CWR

    CWR Registered User

    Mar 17, 2019
    50
    That's what this forum is for, preserving carers' sanity, letting them know they are not alone. Rant as much as you like. God knows I have myself at times.
     
  16. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    You are so kind, thank you for your generous word it moved me to tears.
     
  17. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    Thank you, I so appreciate you reaching out. Irtual hugs to u too
     
  18. leslyz

    leslyz Registered User

    Oct 24, 2015
    214
    Thank you for reaching out and for validating, this forum is truly amazing and a very necessary outlet
     
  19. sausagedog

    sausagedog Registered User

    Aug 22, 2019
    44
    I empathise greatly & am thinking of you, from one human to another - I hope things pick up soon for you
     
  20. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    588
    Female
    What lovely people carers are and what a burden to carry; never mind all the sheer physical effort of caring for a PWD, sometimes that is easier to bear then the emotional side. Decision making, organising and then whatever choices we make, in creep the doubts and the 'what ifs' and 'should I's'.

    Compare the time you spend worrying about your mum and her situation, to the time thinking about your own life and I guarantee you come a poor second; oh, the selfishness of dementia, its ripples spread far and wide.
    Reading your rant, your concern is entirely for your mum, pity for mum's plight, no self pity for you that I can see.
    You've given your best - and more - to your mum and life will settle for her, she is safe and cared for which should bring comfort to you, except it isn't, is it? You are torturing yourself because mum wants to go home.
    You have answered part of that problem already by recognising that it's probably her childhood she wants to go back to. It's impossible not to get upset when your mum is so distressed and it's plain to see that it is tearing you apart. If you search through this forum you will see how other people have dealt with the separation issue; how to extricate yourself from visiting mum with the least possible upset for either of you.
    We're human with frailties and sometimes a good cry is the only way to go, then wipe your tears and feel proud of yourself for being such a caring daughter, your mum does.
     

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