Just starting on this journey, scared...

Discussion in 'I care for a person with dementia' started by saskia, Aug 17, 2015.

  1. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Hi all

    Have been 'lurking' for a while & am now finding the courage to write / tell what's happening with my mum.

    Mum is 76, lost dad 3 years ago & lives on her own 10 minutes from me with her dog ( the dog is a big part of mums life!)

    I would say the last 6 months I have noticed a the changes with mum, depression, isolation, not talking on the phone, no conversation about stuff she used to enjoy. She is an ex carer herself & has always said '' if I get like that,you won't have to worry about me''

    Mum is one of 8 siblings, her older sister is in late stages of Alzheimer's, the rest have died from strokes / hear disease / old age.

    Its now her memory loss which is really starting to show, took her for a blood test only this morning, my brother called her this eve & she couldn't remember it.

    We have tried talking to mum, but she becomes aggressive and refuses to acknowledge anything is wrong, myself &my husband are doing all we can as we only live a short distance away

    I am exhausted as most conversations with mum end up in a row. My wonderful husband does so much for her, garden, takes her shopping, but he lost his mum 3 months ago & is trying to grieve, but its like my mum is taking all our energy.

    My brother is a nurse and is coming to see mum this week to ' have a chat' - he wants me to be there but if I'm being totally honest, I don't want to be, I want him to take more responsibility.

    & I fell so utterly selfish for saying that...

    I read all the posts on here & I know our journey is just beginning, its heartbreaking this illness. My best friends dad has cancer & I almost envy her the tangible aspects of dealing with cancer, Hosp visits, tests etc, something to actually do.

    Thank you for reading & letting me vent a little

    Sas x:)
  2. marionq

    marionq Registered User

    Apr 24, 2013
    Saskia I am sure everyone reading your heartfelt post will feel your pain. We all know the mixed emotions of caring and exasperation, sadness and anger, despair and concern. Dementia sends us all over the place and as you say unlike something specific like cancer we dont know where the illness is going.

    Share the responsibility with your brother if you can and look for help not only with social services but with local groups run by the Alzheimer's Soc. many of these are very supportive and also good fun. Try to get her to a day centre and used to other people in case the day comes when she will need more care.

    Let us know how she and you get on.
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hello, Saskia, and welcome to Talking Point. It's great you found your way here, for the advice and support and safe place to talk, but I'm sorry you needed to, and very sorry to hear about your difficulties with your mother.

    Also, I hope you and your husband will accept my condolences on the loss of your mother-in-law. You have a lot going on right now.

    You are correct that dementia is a terrible and heartbreaking disease, and not just for the PWD, but the family as well. I hear what you are saying about your friend's father with cancer and I agree with you; I'd rather deal with cancer than dementia. Not that I wish it on anyone, of course, but I do know what you mean. This is a safe place to say things like that.

    It sounds like you are getting your mum checked out with her GP and that is a smart thing to do. As you probably know, even if your mother does have some form of dementia there could be other health issues going on as well. (My own mother had early dementia and a thyroid problem simultaneously; the symptoms overlapped but had we not caught and treated the thyroid problem, her health would have suffered.)

    I hope someone will come on and post the link for compassionate communication (please!), which I've read several times and keep coming back to. I am not saying it will fix anything with your mother, but perhaps it can help you to head off some of the arguments.

    Have you the contact information for Age UK and social services and so forth? I'm in the States so will let someone more local give you the contact info, but there are some resources you should explore.

    You're not selfish, you're human, you have limits, and you have the right to your own life. I've learnt a great deal here from both posting and reading, so stop by anytime. Venting is fine and you have the best audience possible here on TP. If you get a chance, I hope you'll return and let us know how you get on.
  4. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Sincerely, get the best Alzheimer's medication as soon as possible. My mum became extremely violent, and the drug she is now on memantine (off the top of my head) really, really helped.

    My best wishes to you.
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
  6. Risa

    Risa Registered User

    Apr 13, 2015
    Hi Sas and welcome :)

    It is a horrible illness to face but if you and your brother can support each other it will make things better. The "chat" won't be easy and I hope things go as well as they can do in these circumstances. If you can get the wheels in motion as early as possible for an appointment to the Memory Clinic and diagnosis it will be worth it and start to think about getting POAs set up as well.
  7. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex

    Thank you all soo much for reading & taking the time to reply

    have followed the thread re the reasoning -read with tears but also some 'aha' moments.

    so glad i have found this site - I think i will be around for a while.

    (i can tend to be a bit jokey at times - sorry if that offends -its just me & how i get through stuff!)

    Sas :)
  8. beverrino

    beverrino Registered User

    Jan 12, 2015
    Hi Saskia
    I can totally empathise with you. It is very difficult being in the situation you are in. Its very time consuming and mentally draining. My mum has Alzheimers and I think its a skill I have developed over the months in dealing with her.
    It is very overwhelming and its best not good to look too far ahead and take each day as it comes. I have a sister who lives close and a brother who lives 2 hours drive away, but unintentionally I have become my mothers main carer,
    Some days I start to feel I resent her for taking up so much of my life, but then I feel dreadful as I don't want to lose her either.
    Sometimes we need more support than we realize and TP is a good place for this. I love my mum dearly, but sometimes there is a part of me that craves the freedom of the life I had too.
    Keep strong and take care x
  9. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Can't thank you enough for responding, it certainly is a skill & one i am picking up daily

    i know i'm too close to my mum (well, was) and i cry as seeing my mums older sister in the late stages of this its truly heartbreaking and to think my mum may become like that - my stomach churns when i think about it.

    But - baby steps i guess - first thing is to get an actual diagnosis, i'm still at the stage thinking it could be her thyroid / depression causing this -but deep down i know it probably isn't.

    virtual hugs to everyone!

    Sas :)
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    Your still have the Hospital visits, tests. etc just that the disease of dementia . Takes away the clarity of knowing something wrong with them.

    But then with my experience of getting mum diagnosed was down was down to fear, stigma of dementia.

    Anger normally comes from fear .

    Cancer ended up killing my mother .
    When Cancer was diagnosed it felt worse then being diagnosed with dementia .
    Because of the time line, 6 months - year .
    Then mum past in 6 weeks!

    With dementia medication we could have more time with mum on earth.
    Even with all the challenging negative, positive behaviour.

    Please don't think I am telling you this to make you feel guilty.
    I felt Just the same as you when I thought something was wrong with my mother, getting mum to have brain scan was a nightmare.

    My mother was diagnosed late into the stages. But mum got last stages of dementia medication which gave us all good quality time .
    Even with the rollercoster of emotions, challenging behaviour issues.
    In this life with any life threatening diagnosed we tend to look into the future of all the negative.

    That we forget all the positive things can happen, even with a life any threatening illness .

    Am Just typing about my own life experience from my own perceptive.
    As I know everyone does not share the same perceptions in life :)

    Take care I hope the meeting with your brother, mother ( maybe yourself ) comes out positive.:)
  11. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Thank you for reading & reply Margarita - really appreciate your comments

    I certainly didn't mean to come across as uncaring for anyone experiancing cancer - i have dealt with this personally myself with a relative, so know exactly what that process is like.
    Its just with dementia - its such an awful lot of unknowns and uncertainty.

    You are spot on - it does come down to my own fear and anger, and looking on the negative side - I guess i'm just someone who likes answers / timescales & knowing what to expect - this is a whole new world!

    sending you a virtual hug

    Sas :)
  12. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Hi Beverrino

    I am so glad i have found this site - i feel brighter today than i have in weeks & its all down to everyone who has responded.

    I know its a long journey ahead - but you have made me feel 'not alone' & that is a godsend.

    Sas :)
  13. Tilly Mac

    Tilly Mac Registered User

    Jun 29, 2015
    my friend started with vascular dementia 18 mths ago and yes it is very hard , I am her main carer and like you I only live 10 mins away,she has two sons one is very aware of his mums condition and has done a lot of organising., getting somebody to go in three times a day to give her her meds, but as for organising her meds and doing her shopping making her sandwiches taking the dog for a walk I do that, I don't mind but as you say it is very tiring mentally and physically , I am the first person to see her of a morning and I do worry the day will come she will not be there or she has died alone, your brother will not understand this yes he will organise things but it is you and your husband that will be there 24 hrs a day, maybe not with her but it is on your mind 24 hrs 7 days a week so my suggestion. Is take an hour or two just for you to try and not think what your mum is doing even it's just having a soak in the bath or getting your hair done, it is a hard thing to do but please try because your husband needs you as well as your mum I wish I could say things will get better but I car'nt but don't let your brother dictate and then go it's a joint thing what your mum is going through and it's very frighting to her , I hope you get on ok please let me no
  14. Slugsta

    Slugsta Registered User

    Hi Saskia,

    I am also new here and at the beginning of my mum's dementia journey. In fact, we don't have a diagnosis yet and I veer between being certain that mum has dementia and wondering whether her behaviour changes are due to depression. She has an appointment with the memory clinic next week, I hope we will get some answers. Like you, I like things to be written in black and white, I don't do well with shades of grey!

    We also lost my mother-in-law in May of this year. In fact, one of the things that convinced me that something is wrong with mum was her total lack of empathy for my hubby, which is most unlike her. Mum is certainly forgetful and I have noticed other character changes but she doesn't display some of the other behaviours that many people with dementia display.

    I am an only child so I don't have the problem of trying to get a sibling to do their share!
  15. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello and welcome. I hope you find comfort and support here. You can voice your darkest thoughts here without judgement. You will find that all those ahead of you on this journey have thought similar thoughts. Temoting though it is to try to keep you mum here in the real world, you will find peace and contentment for both of you if you join hers. My mum has lost conversation too. We now live only in the moment. We talk about what we can see out of the window or if we are out. I dont ask about the past or talk about the future. We are now literally stopping to smell the roses and watch the view. Try to live day to day. The future may never be what you imagine so why worry? You will find the strength when you need it. Keep posting as there are wise people here. Sending you hugs love quilty
  16. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Hi Slugsta

    Thanks ever so for replying
    yes its very early days as well - exactly like you i keep praying its depression related, y/day mum took herself to the docs as she had 'forgotten' to pick up her prescription...long story short, they know her well in the viilage & the nurse came out & asked mum to give a urine sample -which she did. Turns out she has a severe Urine infection which certainly hasn't helped with memory loss.

    Can I ask - did your mum go willingely to the docs for her assesment for the referral to the memory clinic? -this is our stumbling block as mine refuses point blank to acknowledge anything is wrong with her!!!

    But - last night when i saw mum & asked her about the antiobiotics she had been given, she said the classic ''remind me what they are for'

    laugh or cry! i'm opting for something in-between.
  17. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015

    I'm having battles with my dad to, just to get him to go to the doctors for a check-up. Finally persuaded him and HE himself made an appointment on Wed for this coming Tues. I reminded him this morning and he said 'why would I make an app for the doctor, sure there's nothing wrong with me'!!! Started explaining the whole thing again about getting a routine check-up etc. Asked why I was ringing his doctor etc. So if he does go on Tues, it will be a miracle. And to try and go with him, I daren't even mention that!

    Its all a learning curve. Main thing I've learnt recently are the do's and don't list I read on here. It is really helping me be patient and know how to deal with the accusations etc by simply changing the subject.
  18. Slugsta

    Slugsta Registered User

    Saskia, infections area known cause of confusion in elderly people, even when they don't have dementia. Here's hoping your mum improves as her infection clears.

    One of the changes in mum's behaviour is that she has become very passive. She used to be quite stern, one of the wardens where she lives said that she used to be 'scary' (a description I absolutely agree with). Now she doesn't seem to be able to make any decisions for herself. I suggested we should see the GP, she went along with it. The same with the Memory Clinic. She has also slowed down a huge amount physically in the past 6-12 months but blood tests haven't showed up any problems (anaemia, thyroid etc).

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