Only child. Mum has been diagnosed

Discussion in 'I care for a person with dementia' started by jknight, Jan 15, 2016.

  1. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    #1 jknight, Jan 15, 2016
    Last edited: Jan 15, 2016
    Hello! I am struggling. Mum has been diagnosed but she doesn't know (she isn't good with illness so I know keeping the words 'Alzheimer's' and 'dementia' from her is best for her. I am an only child. My husband is wonderful but I feel so alone and scared. PS this is my first post on any forum
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Welcome to TP. You are never alone on here - you can ask away and find support and friendship at every turn. It is a great community xx
     
  3. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    Thank you! Feeling so scared and overwhelmed
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Well there is lots of info to share but one of the things about dementia is that usually it is a slow progression and so you sort of adjust on a daily/weekly/monthly basis. My mum had vascular dementia and so we would bumble along for weeks or sometimes months in the same old routine and then something would change and we would need to readjust.

    Your mum is still your mum so try to take one day at a time and not to look too far ahead - other than with the bits and pieces like Power of Attorney (cheapest do do online and very easy too) and some of the claims for things like Attendance Allowance (give Age UK a ring and they will come and help you do the forms 0800 169 2081 and give you advice on benefits that are non means tested and council tax waiver - they will help you with it all).

    It is also worth in early days going along to your local carers cafe and getting some local support face to face - it was one of my lifelines lol - cuppa and a chat and loads of info.

    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it
    http://www.ocagingservicescollaborat...y-Impaired.pdf

    That's it now or you will be overwhelmed but sometimes it's good to have a few practical bits and pieces to concentrate on just to keep you going.
    Take care of yourself too x
     
  5. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    139
    Hi. I too am an only child so all responsibility falls on me. My husband is fantastic but feel its my shoulders that hold all the burden. This forum is brilliant and have helped me no end. Always here for a chat. Xx
     
  6. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    #6 jknight, Jan 16, 2016
    Last edited: Jan 16, 2016
    Thanks Chelsea girl! Good to know other people understand :)
    Thanks Fizzie, as well
     
  7. PeterMD

    PeterMD Registered User

    Jan 1, 2016
    23
    N.IRELAND
    take it one day at a time

    I wish you all the best, I do the same with my mother I practically lie to her with almost everything I say but they are good lies that keep her happy for living.

    Iv 2 brothers but they do nothing so I feel like an only child too, they r married so just let me do everything to the point now were iv gave up asking them for any help.
     
  8. PeterMD

    PeterMD Registered User

    Jan 1, 2016
    23
    N.IRELAND
    I agree

    I agree iv only joined forum and I found today it was a relief to let out my stresses on here rather than talking to myself.
     
  9. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    Welcome from me too.

    Don't worry about being an only child. Once you've read some of the posts here about the problems some people have with siblings, you'll start to thank your lucky stars ;)

    As long as you take decisions that are in the best interests of you and your mum, you won't go far wrong.

    You'll get lots of support on here.
     
  10. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    WELCOME! I am not an only child but a sole carer so it amount s almost to the same thing. Its a scary road. Try not to panic. Take it a day at a time and PLEASE try not to imagine the future. 10 years down the line my mum still knows who I am even though she get so may other things confused. Plan your help and support around the bad days and like a small child, just do what it best for them, dont ask or argue.

    You have friends and support here.
    Love Quilt
     
  11. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, jknight, I've just replied on your other thread (about food) and then saw this one. I do want to say hello and welcome to TP. Good for you for finding your way here and posting for support.

    Perhaps one of the UK residents will have better contact info for you, but the UK Alzheimer's Association and Age UK are two good resources. Both have websites (and a lot of the factsheets and informational sections on the AA website are brilliant) and I think you can call them for advice and support as well. It's smart to learn what support and options are in your area and/or where your mum lives.

    I am also an only child and it certainly can feel lonely at times. I'm lucky to have a supportive husband but there are still times when it's down to me to take care of something (especially legal/financial/paperwork things where I have PoA and am the only one who can do something).

    But everyone here is or has been a carer and understands what you are talking about, so no worries.

    I love TP (it's always open!) but I also have gotten really good information and support and advice from local groups as well. I'm in the States, and our system is quite different to yours, but in your area you might find carers cafes or other support groups, as well as maybe workshops or lectures or informational sessions or even dementia training, that would be helpful to you.

    One lesson I've learned from being a carer is that if help is offered, immediately say yes. Don't wait, don't think about it, don't say you will ring them back, don't think of reasons why it might not work, just accept the help.

    Best wishes to you.
     
  12. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    I'm with Quilty, being an only child might be better than being deserted by your siblings and left to cope alone (until it's time to read the will) as happened to me with my mother.
    Likewise now its my wife with AZ the family are noticeably absent yet again so coping alone is nothing new to me. Somehow, strange as it may sound coping alone may be easier than being deserted, having no one else who care is better than having people who could care but simply don't.
    That said you've found us here, so you've found and I hope we can help.
    Don't be a stranger as they say.
    K
     
  13. Moorcroft

    Moorcroft Registered User

    Nov 4, 2015
    70
    I just want to say welcome. I'm fairly new here myself. I've found this forum very helpful, and I really recommend the leaflet on compassionate communicating, which has made a big difference for my interaction with my mother and made things much easier.
     
  14. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    Thank you everyone!

    I feel so much better knowing other people are on the same 'journey' (hate that word!!) Thank you, all, for your kind words x
     
  15. RaspPav

    RaspPav Registered User

    Jan 10, 2016
    10
    Pretty much 'snap'

    Hello. I'm new here too & don't know what I'd do without this group! I'm also an only child looking after mum. I've got an extremely supportive husband & 3 young children as well as working pretty much full time so my hands are full! Fortunately mum lives above us so it's much easier to cope.

    I live quite rurally so there is no help locally. We've been offered some sort of 'course' which runs once a week for 5 weeks but it's always on an afternoon right over school pick up so I've got no chance of going. No carers cafe. The only support we get is once every 3m I get a call from Alzheimers support locally so I have a quick chat if I'm lucky enough not to be in a meeting when they call. The problem locally is that everything is aimed at people who don't work so I've got no chance really. Moan over LOL!

    My mum has mild mixed dementia which is a mix of vascular & Alzheimers. She doesn't really recall being diagnosed, although she knows her memory is bad.

    I can't really think of much advice because many things I've been advised just don't help for our situation. It's about finding what works for you. I will echo what others have said tho, don't think ahead but live for today. You will drive yourself crazy if you think ahead too much. Do what you do now, make adjustments where you need to & expect to have to amend plans to suit later on, that way you won't be too stressed changing a few things. Also expect the unexpected, I can't list all of the things that have happened over the past few years but mum has done some odd things or acted strangely which have totally thrown me. I get through this by talking with my husband, no point bottling it up! Also don't be too lead by one piece of advice, take it as a whole ie forums/gp/consultant/cpn & most of all your own situation, only you live with it all so an informed decision is a good one but go with your own instinct.

    Gosh, I've completely waffled! Sorry. Anyway, hello & welcome.
     
  16. jknight

    jknight Registered User

    Oct 23, 2015
    786
    Hampshire
    Thank you! Maybe we can help each other x
     
  17. ukwanderer

    ukwanderer Registered User

    Jan 24, 2016
    19
    West Midlands
    #17 ukwanderer, Jan 26, 2016
    Last edited: Jan 26, 2016
    I am an only child - dad diagnosed last month

    Hi All

    This is my first post.

    I can really empathise with previous posts - it's tough when you are the only person responsible for someone with Altzheimers.

    I'm lucky in as much as I'm retired, fairly organised, & have got Social Sevices motivated so carers go in at breakfast & tea time to make sure dad showers / eats & drinks - he lives alone in sheltered housing & is 88 years old.

    At the moment I'm winging it as it's all new to me. I'm intending taking him to Dementia Cafe next week so he'll maybe enjoy himself & I'll be able to pick up some tips on how to cope.

    Had a few bad days - phone call 5am Sunday to say he was going to library, yesterday he thought he was in a circus tent. Have stopped new medication that MIGHT be causing the problem & started a course of antibiotics from out-of-hours doc.

    Will be seeing GP tomorrow if no improvement.

    I seem to spend my days waiting for bad things to happen - we've had falls, pneumonia, wandering outside in underwear, fire brigade - all in the space of 2/3 months.

    Dad is / was an intelligent man so on good days he knows EXACTLY what is happening & it breaks my heart.

    Before the pneumonia he just forgot words - but it's much worse now. Hopefully it will improve, but in the meantime it's tough.
     
  18. father ted

    father ted Registered User

    Aug 16, 2010
    691
    London

    Have not been on here for a while, tend to only view when I am feeling overwherhelmed, like lots of people I guess, but saw your post and thought I'd reply. You have had good advice so far re: benefits and POA etc. Would only add that being the sole offspring can be hard at times but also means no disputes with other siblings- families don't always pull together! Also when my Mum was first diagnosed the team looking after her just told her (with me not being there despite me telling them NOT to do this). I was agains't this but in fact my Mum took it very well despite a 40 year history of anxiety, depression, panic attacks and numerous hospitalisations for her 'nerves'.
    Her consultant is very respectful and includes her in all discussions even if she doesn't know what he is on about half the time but because he is very personable she looks forward to the appts!
     
  19. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hello and welcome

    ukwanderer, hello, and welcome to TP. I hope you find lots of advice, support, and information here on Talking Point (I know I have). I am sorry to hear about the situation with your father and wish you all the best.

    The Dementia cafe, carers cafe, carers groups, support groups, can all be great resources and a chance to meet other people who know what you are talking about. It can also be the most efficient way to find out about services in your area.

    The Alzheimer's Society and Age UK have good resources and information as well. I think the info from the Alzheimer's Society is very good and when you have time, you might have a look at some of their info and factsheets. You could start here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200120

    and here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200343

    I know what you mean about that feeling, of waiting for something bad to happen. I hope you are able to find a way to avoid the crisis. It's really difficult and there are no easy answers.

    jknight, how are you doing today? Feeling a bit calmer about the appointment Friday, I hope.

    I think father ted has a good point, that I failed to mention, about being an only child. I get a lot of people who say to me, oh, poor you, an only child and no brothers and sisters to help you with your mum, you must wish you had siblings now. Well, it turns out I've always been an only child so I don't know any different way to be and given a lot of the horror stories I've heard (here and in my local support groups), I'm just fine being an only child. There is nobody to debate with and nobody to argue with me (and nobody to take me to court and sue me, or call the police on me, or try to steal my mother's money). I make the decisions and that's that.
     
  20. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Just wanted to say hello. I read your post and know exactly how you feel. My mum is 6 years into her dementia journey and I knew absolutely nothing when she was first diagnosed. Though mum was told of her diagnosis of AZ, she just never accepted it, or ever mentioned it. If it was mentioned, she would fly into a terrible rage and floods of tears so I kept it from her and told lots of white lies. Still do. Its the only way to get her to co-operate at times! I did find that GP's and other health care officials would mention it in front of mum, so be prepared for that. I'm not an only child, but as sole carer and with 3 brothers who do a big fat zero, I may as well be. All I can say is this site is invaluable, as is this forum. We are all in the same boat and here for each other whenever you need advice, or just to sound off. Its a minefield when you first begin and there is no manual written with step by step instructions! All you can do is take one day at a time. One thing I would say is get some care in for mum, even if its just to make her a cup of tea and a sandwich at first, she may not need personal care yet, but that day will come and if you have care in place, she's not only gotten used to seeing someone come in, but it makes it easier to get more help when you will need it. And need it you will. Contact your local Older Persons Mental Health team, and ask them for an assessment. Be prepared to fight for mums rights too, as sometimes the care system lets people down big time. I have had to complain many times to get mum the proper care etc that she deserves over the years, so don't take no for an answer! I wish you and your mum all the best and remember we are here for you xx
     

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