I suspect my father may be struggling with dementia...

Discussion in 'Memory concerns and seeking a diagnosis' started by AztecCamera87, Mar 12, 2019.

  1. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    Dad's appointment has been cancelled. I only found out as I called up memory clinic to confirm the time of it. They told me they called up dad last week and he confirmed that it was ok.

    Of course this was never passed on, I asked for letters to be sent to me about the rearrangement, they said they would try and send me a copy.

    I felt let like crying. I have been using up a lot of my time off allowance from work and arranging my life around him. But nobody really cares.
     
  2. Moggymad

    Moggymad Registered User

    May 12, 2017
    362
    Female
    :( @AztecCamera87 don't you just feel like banging your head on a brick wall. It used to happen to me even with mums diagnosis of Alzheimer's & a letter of consent on file. It was doc receptionists who would ring mum. I complained to the doctor when we saw her. There must be a place on the computer screen to say ring ..... for appointments as the MHN used to get it right & ring me.
     
  3. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    I'm pretty much at my witts end right now. I'm tired all the time, I'm tired of being accused of hiding things being told I want him to stave, I'm tired of not really having much of a life anymore, I'm tired of constantly changing my plans and getting time off from work at late notice. I'm tired my dad behaves so well with anyone else who isn't me or my sister. Dad wouldn't have even remembered who called him a few moments after the call. Why call up the person having the appointment at the memory clinic to tell them it's been cancelled?

    As I said in a previous post, what difference will a diagnosis mean? We will still be in the same situation, my dad will still be completley oblivious of us running around after him and I doubt there will be any further support. I've been pretty much called a liar by medical professionals I have tried contacting Age UK and other organisations, and am just told there aren't any appointments and they would be back in contact. At least without the appointment, I can go to the drop in at my local carers information centre they hold them on Tuesday mornings (again, these things only ever seem to happen at times when I would be working). But I guess I should use the time productively.
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    348
    They always seem to do that.Dad has VD and tells them to send a letter.He cannot use a phone and cannot always use the remote.I look after dad 4days a week and try also to look after mum in her house.My dad sounds similar to yours.Very happy to let me do the running around with appointments etc.I have been lucky with doctors etc as they all ring me and let me know what is going on.4days a week with him is enough.I set those boundaries otherwise he would have me 24/7.Dad has carers in other times and to them he is lovely.Could you do carers?SS would do an assessment
     
  5. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    My dad has carers visiting him 4 tmes a day, they tend to only be around for 15 minutes at a time, and the quality of them varies. He also has district nurses visiting him to give him his insulin injections 3 times a day (although I do any top up injections if needed at night and mornings).
     
  6. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    The memory clinic called, I think it may have been a doctor, they did introduce themselves, but lack of sleep is causing my memory to have small lapses now. They apologised for the appointment being cancelled in the manner it was and have said they will send copies of any communications to me via email.

    I did manage to explain various symptoms and the rather rapid decline (asking where mum/cat/etc is, the incontinence, verbal aggression and personality changes, inability to remember things from 5 minutes previous, the confused yet paranoid theories, etc etc). They did ask about UTIs, B12 etc, I explained that he had been in and out of hospital and they counted these out just a few weeks previous. They said it sounded like from the symptoms that "it may be quite advanced", but obviously he would need to be assessed before any diagnosis can be given. They also said, that dad can refuse to take part in the assessment, including when he arrives to the assessment. No date given, but I was given assurances that he would be treated as a priority for rebooking... how long we will be waiting, I'm unsure, but I felt my concerns were taken into account.
     
  7. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    441
    Glad someone phoned back @AztecCamera87 , and I hope you get an appointment soon. Mum refused to visit the Memory Clinic on several occasions, so be prepared for your dad to be tricky. It's best not to tell him what is happening if you can. Mind you the one time we got mum into the clinic she still refused to see the nurse. I think if the nurse had taken time to just chat to mum in general she could have persuaded her, but she backed off saying mum had the right to refuse.
    It wasn't till mum had a melt down in the doctor's surgery that things moved on. The surgery got a consultant from the memory clinic to turn up on her door step unannounced and he diagnosed probable vascular dementia. By that time the family were already organising moving mum into care so we never followed up on that.
    Anyway they are now aware of your concerns which can only be a good thing.
     
  8. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    I'm sorry you had such a tough time getting your mum a diagnosis, I reckon we could also have a tough time like you. We have a couple of things which may make dad less likely to refuse on the day:
    - on the whole he is always very polite and willing on the outside when medical professionals are involved.
    - he does seem to have sympathy when I say, I've taken to day off work to do something for him.
    - he's so adamant that he has no problem, that I reckon he would look forward to being able to say "I told you so".

    Although, I guess he may not be his old self. When we were teens-20s, he was still quite competitive, so would always be happy when he defeated us in a board game (but, he refused to play things anymore a four years back) or the occasional moment he got lucky in a game of FIFA (mind you he hasn't played one since 2001)
     
  9. Starting on a journey

    Starting on a journey Registered User

    Jul 9, 2019
    28
    After a couple of false starts I finally got mum to attend the memory clinic. The first thing they do is tell them they don't have to stay. Surprisingly she stayed.....it was a very draining couple of hours, she found the patient history difficult and I was asked to take over ....then there was the test and I was quite proud of how she managed to get to the end.

    Unfortunately she had refused to attend the follow up appointment (a MRI was already on file from last autumn).After discussion with the nurse it was agreed that I would attend without her as she is too upset. The GP thinks it's ok too. Not sure how much I will tell her, depends what they tell me. I don't think she wants to know.
     
  10. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    I made a note in the district nurse's book the other evening, that dad had his insulin post dinner, as they had put pre-dinner, but the carers had given him dinner a couple hours previously. The same DN turned up this morning and said, oh, why has some written this here. So I explained, the situation and told her if she is concerned he hasn't eaten to check the carers book. She told me she had given him dinner (from the fridge) that evening as she was concerned he wouldn't be fed, as "he had been in town all day" (he hadn't), I'm surprised she took him at face value and didn't think to look in the carers book.

    Today my dad went out for a walk to the papershop, I don't mind him doing this, as long as he has his keys and and wallet etc. After leaving the house, the next door neighbour came to the door with him. He was concerned, and said he wasn't sure if I knew dad had gone out, as he has left the house during the week without keys and also with leaving the front door wide open on another occasion. Dad seemed oblivious to it all. I explained that I can't stop dad going out, and I was happy he had everything he needed on this occasion.

    An hour passed, he still wasn't home. I went off looking for him, couldn't find him. Phone call from my sister explained that the carer had found him further up the road and dad couldn't remember where his house was. 10 minuted later I spoke to dad, he denied it ever happened and I was just exaggerating it all, he knew where he was, but just wanted to sit on a wall further up the road.
     
  11. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    Working late shift today. Left home reminding dad to wait for the carer to come to sort lunch out before going to the papershop (he would have had to wait for an hour). Sister calls me to say the carer came and dad wasn't home. Apparently she came twice in an hour, and he wasn't home. *Sigh*. Dad then calls me an hour later to say nobody came to for his lunch and he had to do it himself! No point saying she did come and he wasn't home....
     
  12. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    Next door there is a couple with a toddler. Occasionally the kid makes a bit of noise, nothing major. But my dad continually makes comments about the noise. It's odd, growing up, us kids were loud! I used to cry over everything and we all used to slam doors, argue etc etc. I mentioned that to my dad, but for some odd reason he insists we were "as good as gold", it was rather more like that show 'malcolm in the middle', us kids fighting, mum shouting at us. How odd, it's kind of like he's blocking negative memories. Maybe that's also why he's asking where mum is all the time.
     
  13. a8492

    a8492 New member

    Jul 24, 2019
    2
    Never have I read anything more relatable than the first few sentences of this post. I've been caring full-time for my grandmother since her AD diagnosis three years ago, and I've absolutely no shame in saying that this is the most physically, emotionally and mentally exhausting challenge of my life - and I'm 26! However, I'm extraordinarily grateful that my Mum/Dad share the responsibility too (although it falls predominantely to me because they both have jobs, and I have prior care experience).

    Re. tiredness; I haven't had a full night's sleep in at least a year, and my days of having a lie-in are long gone. My Nan has attached herself to me; I'm the one who gets woken up at silly o'clock in the morning asking if it's time to get up yet and so on (although this gets worse when the clocks go backwards in October; the earliest it's ever been is 2:20am!), I have literally had words put into my mouth by those who are meant to 'help' (I was told that I'd 'refused' my Nan to go on medication; I didn't - the doctor who diagnosed her said it was his belief that her symptoms were advanced to the point that medication would have had little effect), and my life has consisted of appointment after appointment and getting asked the same questions over and over again, only to be patronisingly told that I'm doing a good job and handed a list with phone numbers on it. You absolutely feel like banging your head against a brick wall, because it's on your mind literally 24/7 and you feel like you're just not being listened to, no matter how loud you shout.

    However, all is not lost. We've FINALLY been given the answers to the questions we've spent two and a half years searching for. My Nan now attends our local retirement centre in which there is a dementia suite twice a week, which she thoroughly enjoys, so much so we can start putting her in for the full days (10am to 3pm Monday/Friday) from next week, and a week's brief respite is planned for next month.

    I know that my circumstances are entirely different to yours, but please remember that all is not lost - you will get the help you need.

    Re. not having a life - you do have a life, although it may not seem like it. As patronising as this sounds (and I don't intend it to), you have to make time for you. I make a point of going out at least one afternoon a week for a few hours and go for a walk first thing in the morning once Nan has had her breakfast etc. I have to do this, because believe me if I didn't, I'd have had a mental breakdown by now. There's only so much one can take before it all boils over. I know you have a job that requires you to work different shifts etc, and I'm guessing that can also cause stress depending on what type of job it is, but take time out to look after you, because Carer Breakdown is a very, very real thing.

    Sorry if I've wittered on and told you nothing in this message, but it resonated with me a hell of a lot.
     
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,169
    Merseyside
    Welcome to DTP @a8492. You’ll get lots of support here.
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @a8492
    a warm welcome from me too
    your nan is a fortunate woman to have you in her life ... and it's good to hear you are taking care of yourself too

    have you come across Admiral Nurses, as their remit is to suport the family carer
    https://www.dementiauk.org/get-support/admiral-nursing/

    now you've joined us, keep posting
     
  16. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    My dad a fall in the garden yesterday afternoon and was found by his carer, the carer called my sister but left no voice mail. So we only found out until later.

    Dad got aggressive and agitated at the idea of going to hospital, he had a huge cut above his eye and his eye swollen up. Instead he cleaned him up and put a dressing on him and decided the aggression wasn't worth the hassle. The nurse came in the morning and saw it had swollen up tonnes and so dad had to go to A&E. And muggins here had to phone off work again, despite me saying the night before he should go.

    We are still in A&E. Despite being told 4 hours ago dad could go home. As he lives with me, so I can of course look after him.... Dad of course acts perfectly perfect with medical professionals, whilst when with me claims he has seen no doctor etc etc.

    I explained everything to the doctor, but they shrug it off and say, well you have to wait for memory clinic. But I told them his poor concentration and memory Les to the fall. As at home dad REFUSES to use his walking sticks, claiming he doesn't need them.

    I'm tired, cranky, and haven't eaten since this morning (dad on the other hand has been well fed by yours truly).

    We will have falls clinic appointments to keep on future dates. Dad says he can go to them himself no problems.... He can't... So it's more time I got to get off work.
     
  17. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    Home, at last. Host mode is deactivated. Dad tells me he went to see nan in Epsom. More food eaten. Blood sugars fine. Soon, bedtime....
     
  18. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    73
    Dad has pretty much healed up since his last fall, there are still a few marks on his face. Every evening I get home from work with new surprises, odd things.... leaving ready meals (which are his meals) outside for cats to eat, eating my sisters snacks she keeps (I have persuaded her to keep them upstairs out of the way), half arsed attempts at making meals (oh, this is really dragging me down, as he keeps insisting he has never had any food all day) two or three cold cups of coffee just sitting out in the kitchen or in the living room.

    However, the worst thing thats been happening is coming home to a bathroom covered in poo and the house stinking to high heaven, this has now happened twice in the past week. Last night, dad refused he had even made a mess, despite him sitting in his chair with just a pair of trousers on (no pants, pads, top etc) the house smelling so foul and the bathroom covered in poo and his underpants just being left on the floor.

    At weekends he has also messed himself and I have cleaned and washed him etc. I was reading the carers book and they have also been cleaning him and helping him after such accidents. But dad still refuses to believe he is doing this.

    Dad's blood sugars were also dangerously low when I got home from work, the carers gave him dinner at 3.30pm. We have told them not to do this on numerous occasions, we have a written it as clear as day on the front of the fridge and have left a long detailed note about his food needs for them in the front of the care book.... the only excuse we get is "(dad) asked for his food".
     
  19. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,917
    Nottinghamshire
    I really feel for you @AztecCamera87

    My dad’s incontinence - and denial of it - drove me to distraction! He had pads, and then pull-ups but getting him to wear them was a nightmare. Well why would he when he wasn’t incontinent :confused:. He preferred to go commando!! The smell in the house was horrendous no matter what I tried to clean up the mess with.

    This was one of the reasons why my dad needed to go into a carehome.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    719
    I feel ashamed that I’ve had a moan on the forums, especially since I don’t live with Mum; honestly I think you are amazing doing what you do
    But
    Enough
    Cleaning up the poo was the final breaking point for me. Mum denying it happened if my OH hadn’t witnessed it I’d be branded a fantasist.

    Call social services & be brutally honest.
    Your Dads at risk, ask for respite care.
    Write a list of issues/ events & send to all health care practitioners etc concerned, I email as then they can see who has been copied in.
    I keep sending these emails especially as some health care practitioners don’t reply.

    It’s wearing going around & around in the loop.

    Incredible that they keep expecting you to take time off. Think you are going to have to make the work/ relationship/ home time frame very clear to nursing staff etc. Follow up all phone calls with an email clarifying what was being asked of you & your sister.
    No one has the right to assume you will look after your Dad, & certainly not make you feel guilty when you can’t.

    If your Dad needs help & care then the health professionals have the answer already.

    Write to all concerned with your Dads care & state the detrimental effect this situation is having on you. Also go & see your own GP & get all this documented.

    It might not change anything immediately but it helps build a case.

    Good luck & keep posting

    You have a life, & shouldn’t be made to feel guilty for living it.

    P.s
    It’s very easy giving out advice but I’m struggling to take my own advice at the moment. I am determined to not fold this time. The first time you say no when asked to do something is awful. But once you’ve said no - it becomes easier.
    Ref your Dads prescription - ask for it to be delivered all pharmacies do a delivery service.
     

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