1. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    #1 holly_wood, Oct 19, 2015
    Last edited: Oct 19, 2015

    I've just joined TP as I have been worried about my mum for a while and she seems to be getting worse.

    About 8 years ago she had an operation to drain a cyst on her brain which was diagnosed when she had cognitive problems (such as not able to write things down). She had a stent fitted and all was fine for a while and she has regular check ups and MRI scans to check the stent is still draining the cyst.

    Over the last couple of years I have felt that she is not herself, initially it was just forgetfulness, but lately she seems muddled and things she used to be familiar with seem complicated (using a cash machine, getting lost in the car going to places that she doesn't go every week but is familiar with)

    She was referred to the memory clinic about a year ago and had a CT scan. She was told that she was showing no signs of dementia and its probably to do with the cyst/stent. We have since been back to see the neurosurgeon who has confirmed that this is not causing the problems. With his intervention we have managed to get an appointment with a neuro consultant in November.

    My concern is that this appointment will not shed any light either. My mum lives on her own and seems reluctant to contact myself or my brother by phone or to visit us despite us telling her repeatedly that she is welcome. Her grandchildren hardly know her because she doesn't see them often enough. We do visit her, but it usually means sitting in front of the TV and the kids get bored. She has never been a typical grandma, but seems less and less interested in them.

    Also, as she lives alone, I am concerned that she could have an accident in the car, do something stupid at home. My mum is 64 and she does still work in a shop, but has been having a few problems with making mistakes on the till so I don't know how long her job will last. If she loses this she will spend even more time on her own.

    Both my brother and I feel that we are losing our relationship with her and if she does have dementia this can only get worse.

    I am finding the whole process of understanding what is making this happen extremely frustrating as we first went to see a GP about 18 months ago. It doesn't help that my mum sometimes knows she is having problems but then other times thinks she is fine and nothing else needs to be done. I struggle to get straight answers from her and the story about events/situations seems to change all the time. I really don't know how to deal with this situation and feel hurt/helpless/angry/at a loss etc

    Has anyone got any advice?
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP :)

    Do you have Power of Attorney?

    Write down everything that is worrying you & hand it to the receptionist to get the consultant to read it before you see him.
    Don't be afraid to speak out when you see the consultant.
  3. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    Thanks for your post.

    No I don't have POA but it is something I have thought about getting, not really sure how to approach the subject as my mum would have to agree to it unless I go through the courts was my understanding (may be wrong).

    I have felt quite awkward in appointments as my mum seems quite shocked when I talk about situations, but I know its got to be said to get her the help she needs.
  4. theunknown

    theunknown Registered User

    Apr 17, 2015
    As far as PoA is concerned, your mum would need to understand what she's being asked to do. She either needs to read the paperwork, or be able to understand when it's read out to her. The courts (Court of Protection) comes into it if your mum no longer has enough cognitive reasoning to understand what she's signing away. Because my mum was on a mental health ward I never got a PoA, and had to go to court to get deputyship in order to take over my mum's financial affairs. It's costly and takes several months. More importantly, my husband and I have so far spent around £14,000 (since January) in order to pay bills and top-up care home fees, because until I got deputyship I couldn't access my mum's accounts. We were only able to do this because we had savings, and my husband had shares that he sold. Of course, as soon as I'm able to set up a deputyship bank account, the money will be paid back, but you have to have it there to use in the first place. If it hadn't been for my husband being on-side with me, God knows what would be happening to my mum (she needed to be in care full-time; it wasn't a case of not having her at home with us).

    The lesson for us has been get a PoA when it doesn't seem important to do so. We're planning to do this in the near future, although we have no current health problems. I'm in my mid-50s and my husband's not yet 50. Sign up for it when there's no mental health and emotional issues surrounding it. It will only be activated if it's needed. My mum's sister was saying for months that we needed to get PoA for my mum (my cousin's had it for my uncle for several years), but I would go along with my mum's insistence that this was my aunty fussing about things that didn't need to be done. Obviously it's very emotive to argue that a parent needs to give you PoA when you're basically saying you want access to their money. Like many, I didn't feel able to insist that my mum wasn't completely compos mentis(?) and should give me rights over her affairs. I was in denial about her mental health and wanted to cling onto my 'normal' mum.
  5. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    Wow, that's given me a lot to think about and you hit the nail on the head that it seems as though you are wanting to access their money. I just want to be able to make decisions for her more than anything because I can't see her being able to make them herself soon.

    Thanks for the information and the heads up, I think the last thing you need is financial worry and court battles when you have a relative who is ill. I will speak to my brother and work out how best to approach it.
  6. Lash

    Lash Registered User

    Jun 14, 2015
    Hi, reading this is almost like reading a story of our life. My mum is displaying same kind of symptoms, behaviour changes etc. Again not a 'normal' grandma and rarely sees the grandchildren, relationships are being ruined. I managed to get a memory clinic referral in August, still waiting for a follow-up... Mum was advised to stop driving though doesn't fully understand why as denies or can't see that there is a problem so I took the car keys(didn't know what else to do) however this is now a weekly battle and I'm a devil child, sometimes you can't do right for doing wrong. I hope you get some answers somewhere as it can often feel very frightening and lonely. Good luck X
  7. notmymum

    notmymum Registered User

    Oct 29, 2015
    in the same boat

    hi i totally understand the feeling of helplessness but be thankful she is actually willing to go to appointments.
    My mum started showing signs in jan 2014 but i just put it down to her caring for my grandmother and then my grandmothers death in june when she got worse i thought it was grief.
    She lives 100 miles away and as I suffer from ill health as well rarely see her in person but we almost never go a day not on the phone.
    I noticed she couldn't remember the day, the days when my husband was working or sometimes even what month. Then she started loosing things ( well not actually but thought she'd lost stuff) this would go over days frantically turning the whole house upside down looking for bank stuff and paperwork etc accusing my step father of stealing or hiding it. She phoned me one morning screaming that I had done something to her laptop to stop her getting on her bank as i had stolen all the money out of her account. Shes had me in tears on many occasions.
    I wrote to the dr and he rung and was positive about my concerns but said there wasn't much he could do as she point blank won't go to the dr's, he sent letters requesting 'routine appontments' just to get her down there she lied about making appointments to me and her partner and then when she wrote dates on the calendar when we arranged time to take her she lied and said the date was wrong and she'd already missed it. She now is at the stage where she wakes up in the mornings some days and doesn't even know who where and what day it is. If her partner is there he rings me and i have to calm her down. I have begged him to ring an ambulance just to get her 'into the system' but he says she wont like that. Which I want to scream at him I don't care what she likes she's ill and not doing anything is neglect. I took the horrible choice at the weekend to tell her I am not playing along with her everything is ok game anymore and she has to see a dr and i don't want to talk to her until she does.
    She allowed her partner to take her to the a&e and they did tests etc and are referring her to the memory clinic be it when she was left alone she wandered off in her socks and was found wandering the car park with a ventflon in her wrist for blood collection and no one stopped her.
    Apparently since then as I haven't phoned she's been telling everyone I am living in her loft and only coming down when she goes out or is asleep as I am having an affair with her partner?????
    I am at my wits end.
    Her partner wont even go to the dr as an appointment for himself and tell whats going on and he just keeps saying ' oh i can't do that she'd be angry' its like fighting 2 people in denial!
    I hope the memory clinic people work out as I really don't know what else I am supposed to do and keep being told my mum has rights and they can't make/ discuss her with me is right getting on my nerves.
    Children have rights to not be scared or be in pain but if they have rotten teeth you take them to the dentist its called tough love!!!!
    Very frustrated :(
  8. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    Thanks for your post, its a relief to find that I'm not the only one with a reluctant grandparent, although we went to see my mum yesterday, took my youngest and she seemed much brighter and coherent and he even got biscuits and crisps!

    Lets just hope the next appointment gives some answers. Good luck with the memory clinic, I found the lady who came to see my mum very helpful and understanding, just everything seems to take so long and in the meantime things get worse...
  9. holly_wood

    holly_wood Registered User

    Oct 19, 2015
    Oh my, makes my situation seem like a walk in the park! Maybe you need to look at getting a medical POA so that you can discuss her health with the docs etc? Will need to get your mum to agree to it though and I think that will be your biggest obstacle. Its something I've now looked into, just need to broach the subject with my mum and brother and if I'm honest I'm putting it off.

    Hope you get some help from the memory clinic, they were helpful in my case, but as my mums CT scan showed no physical signs of dementia they are no longer involved.

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