Need a bit of support, can anyone help?

Discussion in 'I care for a person with dementia' started by Tappers61, Jul 13, 2018.

  1. Tappers61

    Tappers61 New member

    Mar 10, 2018
    My mum has been given a diagnosis of Mild Cognitive Impairment after a series of dementia/memory tests. This means we are not able to access any of the dementia services locally, I understand that there are limited resources and these need to be prioritised so I am not unhappy about that at all. She is still forgetful and unable to cope with anything more than 1 thing at a time, which is what the Psychologist would happen. Physically she is wobbly as well, and is increasingly needing more care. We have lovely careers that go in daily and help. I am the only child and today I am just overwhelmed by the scale of what is ahead of me, knowing she will not get better but not knowing how long she has and how she will deteriorate and knowing that I am pretty much on my own. I know that I am lucky that mum has funds so we are not reliant on the poor overworked social care system. I know I am very lucky in many ways but today, well today is rubbish and I just wondered if anyone could send me a virtual hug with the understanding of all this and maybe being in the same place. This is such a lonely dark place to be whilst trying to retain some sense of normality in my own life and not get buried under this along with the sense of guilt that I should somehow be doing more!
    Thank you for reading if you have got this far, knowing there are others out there who are in similar boat does help a bit. Sorry if this sounds a bit wailing and self indulgent but I just needed to get it out and say help!!
  2. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    I'll certainly send you virtual ((((hugs)))) @Tappers61 and support and wishes for strength for you.
    One day at a time and keep reading and posting, you will get support here.
    With love xxx
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Welcome to TP @Tappers61 (((HUGS))) supplied as well
    Now that you have found us please keep posting so we can support you if things get a bit overwhelming for you
  4. Tappers61

    Tappers61 New member

    Mar 10, 2018
    thank you so much @Prudence9 :)
    Am about to take a deep breath, mop myself up and go shopping and plan to buy myself a big bunch of flowers to say well done to me!
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi @Tappers61

    I'm sorry to read about your situation no understand ha hard it must be. I'm glad you found this forum. There will always be be someeon here to listen to and support you.

    Keep posting!
  6. Tappers61

    Tappers61 New member

    Mar 10, 2018
    Thank you, this whole experience is really quite overwhelming, mostly I can deal with it but today not so well!
  7. Tappers61

    Tappers61 New member

    Mar 10, 2018
    thank you :)
  8. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Big hug to you and a pat on the back for getting this far. Don't beat yourself up about it as it is not your fault and it is such a difficult thing to deal with. You are doing a marvellous job as far as I can see.

    I am not an only child but I might as well be, my sibling is either blind or very selfish and I have been abandoned to get on with this myself. It is not a nice feeling.

    You will eventually need more help or you will become completely overwhelmed. Please don't be afraid to ask for help.
  9. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    Hi @Tappers61 - from another only child whose Mum is journeying through this awful disease.
    Believe me, I know just how you feel. The buck stops with you and you only.
    In some ways (if you read other threads on here), this can be a positive. At least us 'only ones' do not have to wrangle with siblings! But it is a very lonely place when there is only you to make these huge decisions and face your Mum's decline.
    Have you anybody (relation, good friend) that you can offload and talk to? My OH is as much use as a chocolate teapot with illness and difficult feelings, but thankfully my daughter is wonderfully supportive.
    If not, there's lots of support and help here ... just ask.

    Oh and here's another HUG to help your day along!

  10. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    I know exactly what you are going through @Tappers61 and I send virtual hugs to you. You sound a lovely daughter and doing a wonderful and caring job looking after your mum. I was the sole carer for my mum until the dementia finally won and we had no option to move her into a care home to be looked after as I could no longer give her the specialised care mum needed 24/7 and just wanted her to be safe and well cared for. It is a very sad and lonely journey and I just urge you to get all the help you can both from family and friends. You say your mum has enough money to fund her care so, thankfully, you will not need to involve SS at this stage. It is so overwhelming with thoughts as what is to come and you will have bad days and not so bad days. I cried so many tears for my mum that I felt so drained some days. You can only be there for her, and give the love and support that she deserves. I joined a couple of local Carers groups and they helped me with support and friendship during my mums illness and, of course, keep posting on TP as this has also been a lifeline for me. My mum is no longer with me now but although I miss her terribly and still suffer so much guilt with all the ‘what ifs’ I try and comfort myself with knowing that I did what I did out of unconditional love for her and hope that in her own way she knew this. Take care xxx
  11. kindred

    kindred Registered User

    Apr 8, 2018
    Sweetheart, welcome and thank goodness you found us. You will never be alone now as you have all the wonderful people on this post. I am so sorry about your mum and understand how overwhelmed you must feel. Guilt that we should be doing more comes with the territory as anyone on here will tell you. It is vital that you do retain your own life and one foot in normality. I would say that your mum's decline may be very gradual, not full-on. I found that a comfort when my husband was diagnosed and we had no help from the social services either. When I felt overwhelmed as I was alone with coping too, I tried to put myself in control by telling myself I was the manager of the situation, such as getting in care, and seeing if anything else was available. There's often private daycare too. Many virtual hugs and keep posting, we are a good bunch. warmest, Geraldine aka kindred
  12. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Tappers61, welcome from me too.

    I was in exactly the same place as you when my wife was diagnosed with MCI just over 2 years ago. I found it important to do two things. Firstly I got affairs like Wills and POA sorted and, secondly, I decided to stay positive and enjoy life - I have found that this is still possible.

    Although your mum hasn't progressed to dementia many of the issues are the same and you may find a lot of the content of an AS Booklet useful - just follow this link to see it

    In case you haven't seen it, there is also an AS Factsheet on MCI and you can find it here

    As others have said, keep posting. We all travel the same bumpy road and we all support each other.
  13. hilaryd

    hilaryd Registered User

    May 28, 2017
    Wishing all the very best to you @Tappers61 - I've nothing much to add to what's already been said, but just wanted to add my supportive voice. Strictly speaking I'm no longer a dementia carer, as my own lovely mum died earlier this year, but these forums have become such an important part of my life and my support network that I still pop by when I need a bit of comfort. So many good and caring people here, who will understand and help you to cope.
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Not sure I have anything else to add to the good advice above. Definitely get the legal and financial issues sorted ASAP, don't be afraid to get help, and take everything that is offered.

    I'm another only child; there are more of us here than you'd think. Welcome to Talking Point and best wishes to you.
  15. try again

    try again Registered User

    Jun 21, 2018
    I'm sort of in the same space as you. A mum that is not diagnosed but seems worse every time I go and see her. A sister who lives away and has her own family. I think there is a grieving process about the perceived lack of a personal future, and angry and frustrated is a part of that. The online dementia course and you tube videos I have been watching this week have calmed me down. I am not arguing so much with mum, telling little fibs . She has always been awkward but this is not that but something more. So I accept the illness, will take better care of myself (stop comfort eating and drinking, get exercise and try not to worry so much).
    If she's amenable, get someone in each week and ensure you do something you enjoy!
  16. Blondee

    Blondee Registered User

    May 12, 2018
    Hello tappers61 and welcome to Talking Point.
    I’m an only child too and was sole carer for my lovely mum until she was admitted to a care home 6 weeks ago today. It’s tough no matter what you do but I’m so glad you’ve found Talking Point. I didn’t post here until I couldn’t do any more but the support I have since had from others has been immense. So don’t hesitate. You’ll always find someone here willing to help pick you up again. Sending hugs.
  17. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    Big hugs being sent your way @Tappers61 along with a warm welcome to TP where you will find lots of support.
    As already suggested, I would make sure legalities like a will and power of attorneys are done ASAP. You don’t say if your mum goes to any sort of outside activity such as a day centre, I’d not, you could maybe look into this.
    Keep doing the stirling job you are already doing and don’t beat yourself up, you sound a wonderful daughter.
  18. Jale

    Jale Registered User

    Jul 9, 2018
    Duggies girl I'm in the same boat, sometimes I do wish I was an only child.

    Tappers (Hi) sending hugs your way - I think we all somewhere have that strength to cope - not all the time but it is there. If there is one thing that I am learning very quickly about coping with this illness - it is better to "talk" to others who are in the same or a similar position
  19. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    South Yorkshire
    Hello @Tappers61 please don’t despair. Just take one day at a time. It’s no good looking too far ahead. This journey can take many years and everyone’s story is different albeit with lots of similarities. As advised, get the legal side of things sorted now while you can. It’s good you have carers coming in and I would also recommend day care once or twice a week. I think it’s important for your Mum to socialise with other people and not be so reliant on you. Having said that you should still enjoy times with your Mum - go out for coffee and cakes, go to the theatre, go shopping - whatever you’ve always enjoyed doing together. She is still your Mum and you should still have quality time together. Be patient and allow more time to do things. Good luck and keep posting xx
  20. jknight

    jknight Registered User

    Oct 23, 2015
    Another only child here! Mum is also on this dreadful journey. I am doing everything on my own. Mum is self funding (at the moment) so i have put carers in place & meals on wheels. Mum VERY resistant to any organized activity or any suggestion of a memory cafe.

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