Cancelled her appointment

Discussion in 'I care for a person with dementia' started by Lavender45, Jul 2, 2015.

  1. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi

    I just want to scream!

    I am my mum's full time carer. She is still in the process of getting a diagnosis, but her GP is fairly certain mum has vascular dementia.

    Mum likes to have things all her own way. This is nothing new, but now there is no way to reason with her. If I leave her alone for more than an hour, eg to have lunch with a friend, she will sulk because she has been left. I try to keep my friendships going. They are a lifeline into a non dementia world, if only for a short time every few weeks. Today I went to see a friend. I checked mum was ok. I checked she'd had her medication told her where I was going and when I would be back.

    Whilst I was out mum decided to cancel the memory clinic appointment she has for September, but she didn't tell me until tonight. She tells me she will not see anyone about her memory, there is no problem with her memory. Its me making her out to have a problem.

    I wish it were that simple. Mum had a GP appointment yesterday and he tried to explain about how important it was that she was properly diagnosed. It didn't register, she just laughed at him. Today she cannot remember that she saw him and so of course cannot remember what he said. On top of her memory being poor mum is becoming increasingly verbally aggressive over even small things and she has started to imagine things have happened which I know to be untrue like a stay in hospital last week. There is some problem, but mum is so far in denial that she has me pulling my hair out. As she has no problem in her eyes mum sees no reason for carers or day care so its down to me to ensure she is ok and entertained. Cancelling the appointment just feels like revenge on me for going out. It sounds petty of me and I know it is, but she looked so smug, I swear she knew exactly what she was doing.

    Sorry to moan, but honestly sometimes I could just scream, except I cannot scream at her because she's not well. I do not have the patience of a saint and maybe its the heat, but she's led me a merry dance all week!
     
  2. Lawson58

    Lawson58 Registered User

    #2 Lawson58, Jul 3, 2015
    Last edited: Jul 3, 2015
    Hi Lavender,

    I am so sorry to hear about your problems getting your mum to keep her appointments and to get a diagnosis.

    I think that this is something that has affected many is us here on TP and even when a diagnosis has been made, the denial continues. It took 3 years to get a diagnosis for my OH, years of battles to get treatment for him and even now he doesn't really believe that he has Alzheimer's.

    There were times that he cancelled appointments because he couldn't see the point of going but the clinic had seen it all before and were very understanding and co-operative when I phoned back to reinstate the appointments. Our GP (with my consent) got my OH to attend his appointments by challenging him to prove that I had got it all wrong and that there was nothing wrong with his memory and that worked well.

    It seems also to be a common thread that experiences like yours continue until there is a crisis before help arrives for you.

    You are very wise to keep up your friendships and you should try and maintain your outings and time for yourself. Dementia will rob you, steal your years and your sense of self if you let it.
     
  3. nannyd

    nannyd Registered User

    Jun 23, 2015
    3
    Hi Lavender, I read your post and thought oh yes me too! Mum has had a diagnosis of vascular dementia and is in total denial. She has cancelled clinic appointments and refused to go to appointments. She has made numerous appointments with her GP and then either forgotten or refused to go. Luckily mum's GP is very good and they are very understanding. She often says she doesn't need any help and can manage. She can't. She "knows" she does her own cooking and shopping and goes out every day. She will insist on this in the face of all the evidence. Unfortunately she can also be rude and verbally aggressive towards me. Everyday I wonder where it is all going to end? The doctor at the memory clinic gave mum her diagnosis, then, when asked what we can do about her refusal to accept support replied " nothing, you will have to have a crisis".
    Keep up your own social life as far as possible. Friends can be a great support and offer an opportunity to vent when frustrations get on top of you.
     
  4. opaline

    opaline Registered User

    Nov 13, 2014
    182
    I'm sure if you phone the clinic this morning they will re-schedule, as Lawson says, they'll have seen it all before, you may even get a cancellation sooner! Don't tell her about any future appointments, you are 'going shopping', 'to the bank', 'for lunch', etc and then just take her to wherever the appointment is. You'll probably get a lot of grief but at least it won't be for weeks beforehand. We've all been through it so we know how you feel, xx
     
  5. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Thank you

    Thanks everyone. I was just so mad with her last night, but there was no point in saying anything to her. Mum rarely makes phone calls these days. She won't even call friends. She always asks me to call for her. That's what made it feel so deliberate in retaliation for my leaving her to go and see a friend. I'll be on to the clinic as soon as I'm likely to get an answer. x
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,485
    Female
    London
  7. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    Are you sure she actually cancelled it or just thought she did?

    Mum used to tell me that all the problems were in my head, she was worried as the Police were coming to lock me up for the murder I had committed but I deserved it. She used to scream at me that everyone knew it was me that had gone mad and they all hated me.

    Obviously this was her voicing her own fears but not realising it but it wasn't nice to listen to that come from your own mother.
     
  8. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi.

    I rang the clinic and yes she did cancel the appointment. Sounds like she was pretty rude to the man she spoke to yesterday. I have to say the lady I spoke to was very understanding I guess you're right onlyme they have seen it all before. The appointment is reinstated and even better they have said they will address all future letters to me and not mum. Might make things easier. Feels like a bit of progress! Thank you everyone again. You are all brilliant!
     
  9. Isabella41

    Isabella41 Registered User

    Feb 20, 2012
    901
    Northern Ireland
    Hi Lavender. Welcome to TP. Are you 100% certain your mum has actually cancelled the appointment. You may find when you ring to check that the appointment is still there. I think in future it might be a good idea not to mention that there are appointments and just tell her you are going out. My mum sounds so much like your mother - head strong and likes her own way. I found it easier not to forewarn her of anything as it created less annoyance. Again like you I swear mum went out of her way to make life difficult for me. She was also verbally agressive and was convinced I was leading the high life on her money. She wasted no time telling anyone who'd listen this was the case. I am unsure what your relationship with your mother was like before dementia came. I think that the relationship before plays a large part in how the caring role plays out when dementia is present.
    I found the past of least resistance was best in the end. There is no point in arguing as it only heats the suitation up more. Whatever happens try your hardest to hold on to your friends and they will be your lifeline as the dementia journey continues. When you do get to the memory appointment give them a pre-written list of all your concerns with specific examples of your mum's behaviors. They will be used to this and it will be very useful for the consultant to see this. I used to sit mum down in the waiting area and tell her I just needed to check something before I slipped back to reception and asked the receptionist to attach my note to mum's chart.
     
  10. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    oh why do I feel this is my mother, but yes call clinic and make sure and they will probably maybe realise. Could you say to them that if in the future mother calls, get them to call you back and acknowledge. I have found that if mother cancels something to be honest that's her problem,. Sorry I'm a hard *****.
     
  11. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    The clinic confirmed mum did cancel her appointment and was pretty nasty doing it, they'd added it to her notes. The September appointment will be our fourth at the clinic, its been hard as mum won't admit to a memory problem when she speaks to the consultant.

    The memory clinic is fun and games. I'd listed issues for mum's GP and he forwarded them to the consultant. I also printed off extra notes and tried to get the receptionist to pass them to the consultant, but I was told oh no we don't do that. The consultant didn't read the notes the GP forwarded until mum was in front of him, she could see what I'd written. I know they are very busy, but that's not idea. And be cannot find mums scan results!

    You are not a hard anything patsy56. I've only been caring for mum full time for 6 months and I'm full of anger, frustration and a lot of other negative things. I'm only making sure she sticks to her appointments as for my benefit (possible future help if she's in the system) as much as hers. I am definitely no saint!

    Mum and I have never had an easygoing relationship Isabella41. Quite honestly she is a bully and always has been. She has always had a temper and has never had any reason in her opinion to see anyone else's point of view. All these character traits and more seem heightened now making caring for her hard going. Mum hasn't accused me of stealing anything as yet, but having read as many posts on TP as possible it seems to happens lot. I hope I'm prepared for that one. I have been accused of trying to kill her by overdosing her on her medication. That was hurtful, I try to remember its not mum it's the illness, but its also typical of something she would say if she wasn't poorly.

    Reading tho back I just think wow I'm such a moaner. It's really nice to be able to say what I mean knowing that the people on TP understand.
     
  12. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    You are not a moaner, you are letting out your frustrations and anger and your built up tensions. Lets put it this way, we are all cyber friends here, and we need unleash our thoughts somehow.

    BTW thank you to the person who edited my post *****, I didn't mean to swear or be nasty but I just let my feeling go.
     
  13. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    #13 Onlyme, Jul 3, 2015
    Last edited: Jul 3, 2015
    I think TP has got anti swear software installed as it often blanks out things which is probably for the best sometimes or the air would turn blue!:D

    Lavender, your Mum has probably done more to show the clinic her real level of mental state by shouting at them than would have been shown in a proper appointment. In a way it's a good thing they saw her mid rant.
     
  14. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Thanks Onlyme that hadn't occurred to me, but you're right!
     
  15. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello lavendar and welcome to tp. You are not moaning and describing 2 years if my life that is now past. Dont let your mums bullying stop you from having your own life. I gave up too much and realise now that nothing would have helped her be happy. Her mental state before and during the early stages did not allow it. I learned to set boundaries with my mother. I told her if she acted out in front of my chikdren i would leave. If she got abusive with me i left. It got bettet as a result. Some of the behaviour is due to bring scared by the dementia but a lot will be within her control. Try calmly setting boundaries. I always phoned a couple of hours later to ask if she needed shopping the next day but ignoring the previous episode. We are here to support you and sadly, like my mum it will take a crisis before extra care goes in. Take care of YOU first. Your mum wont die because you go out and she is in a huff.
     
  16. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    :D my writers forum does not like the word "f*g" the British slang for a cigarette. it used to tell me off, I will be more careful in future.
     
  17. Nipper2011

    Nipper2011 Registered User

    Jul 7, 2015
    2
    I know how you feel!

    Hi

    I've been caring for my mum for the last 2 year, the last year full time, giving up work, and i've had to go through all that you have mentioned.
    I'm in a slightly worse situation as my mum also has a couple of heart conditions also she is on Warfarin, so more trips to the surgery, and having to explain this is a nightmare.

    I've had mum ringing making appointments, cancelling others, I have talked to the doctors and now I have taken control of all of that side of things, the doctor only contacts me on my mobile, i've had to take the landline off the calling list as they would call and mum wouldn't remember they'd called, so we would miss appointments, now if mum rings to make or cancel an appointment they ring me to confirm, I also sit in on all appointments so I know what is going on, after a few missed appointment and a few words exchanged between me and the staff at the surgery, I explained that she doesn't remember, and is confused, so they needed to be more understanding and to talk to the person caring, we sat and talked for about an hour but it has helped so much with dealing with appointments and communications between us. Mum still doesn't accept that she is ill and needs help, you will find that your mum will put on an act in front of doctors or assessors, trying to give you the help that you need, it is very difficult as it looks like butter wouldn't melt in their mouth, and as you said you are the one having the problems, I found it with family as where they are not dealing with it on a daily basis they don't see it.

    I find that my mum jumbles things she's watched on TV with whats happened in real life and also memories get jumbles up and it does get very frustrating having to listen to it.

    I've got mum into colouring in pictures which keeps her amused and quiet, laving me to do everything else.

    The times you do manage to get away for an hour or so, it is such a relief and the stress is lifted, but in the back of your mind you don't know what you are going to walk into when you get home, you do need to get out for you own sanity.

    I see that you make sure she has taken her medication, i've had to put it under lock and key as when I wasn't about she would think she hadn't taken it and take it again, just try and keep things to a routine as much as possible. I think i've got shares in post it notes, having to leave notes.

    Talk to the medical staff and get them to deal with you and only you as i've found it made life easier and remember you are not alone in dealing with it!
    (oh finding a quiet spot and having a good scream does help)





     
  18. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    This reminds me of the fun and games with the hospital before Christmas. They wrote a letter to my parent's GP about my dad's metal condition, recommending dementia assessment/treatment and also recommending they test my mother's mental health at the same time due to behaviour they'd observed when she visited my dad. All well and good, except that instead of posting it to the GP, some bright spark then handed this letter to my dad, not even in an envelope, and told him to give it to his doctor! This was at a time when my dad's dementia was already pretty advanced and such a task was impossible for him. He just stuffed the letter in his bag and forgot about it. My mum found it when he arrived home, read it and hit the roof. This was the same hospital that let my dad wander around the entire building without any supervision. Honestly, sometimes when I spoke to the staff on the phone I felt like I was talking to a group of mouthy teenagers rather than medical staff.
    This is also why I am very careful about what I put in writing, because I know from this experience that anything I write could end up being read by mum and then all hell would break loose.
     
  19. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi Nipper2011

    Thank you for your post. I totally agree that precious time out is tinged with wondering what I'll be returning to, she could be fine, she could sulk, she could be angry. There's never any certainty.

    You are definitely right when you mentioned putting on an act. Mum can be sweetness and light joking and making light of all memory issues when she goes to see her GP or to the memory clinic, afterwards I get the complaints about it all being such a waste of time. I know that I do not understand how terrifying and frustrating it must be to have black holes in your memory, but if I'm honest some of the bile she comes out with is pure mum.

    I do feel frustrated by mum's hiding memory issues behind laughter and good humour to those who's help we might need in the future. Mum's GP is fantastic, I cannot fault him so far, he's been mum's GP for more than 20 years and knows her well enough to see the differences. I'm not sure about the consultant at the memory clinic. He seems to be taking things at face value, which is no where near the true picture.

    Medication is a huge sore point with us. Mum absolutely hates my taking control, it has caused many arguments and I guess part of her denial of a memory problem, but it's non-negotiable, even if we fight about it forever and a day.

    The hospital have said they will address letter to me and not mum, hopefully they will be true to their word, its a good idea of yours to use your mobile number as the GP contact, I'll borrow that one asap.

    There are very definitely times I need to scream. Our local park walking the dog gets a lot of my frustration and a good dose of my tears too at times. Just have to make sure no one is around! As you can see I'm also willing to scream in writing here on TP. Have to say I felt so much better getting it off my chest and every reply has given me something to think about.

    Lavender45 x
     
  20. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi Long-Suffering

    I've read what you said and that's appalling, I thought it was bad enough that the memory clinic consultant had what I'd written on the screen in front of mum, but handing a paper about someone who was not actually their patient was so much worse, though I guess I have to admire them for being on the ball with concerns.

    Much of what I do to try to get mum a diagnosis is done behind her back through necessity, mum would go completely bananas if she had even the smallest inkling of what I'd been up to. It may be (and is) for her own good, but never in a million years would she see that. I am so glad we have mobiles otherwise I'd be taking up a very regular slot in the local phone box, assuming it works.

    I will definitely have to be careful about what I pass to the consultant, mum would have no support if I wasn't here and I definitely would not be here if she knew how much I told the consultant without her knowledge.

    The NHS staff I've spoken to with the exception of one gentleman on reception have been great, but its so frustrating when you get someone who is not paying anything more than lip service to what you are saying. I know NHS staff are under pressure, but what happened was unacceptable IMHO. Did you complain?

    Lavender45
     

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