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
    43
    I don't think my dad will ever be able to cope with his ITV3. Also we have this very odd bond over murder she wrote. Hahaha.
     
  2. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    I would like feedback. Am I just being over protective, am I just seeing things that aren't there. In my mind my dad has pretty advanced dementia. But it just seems nobody else can see it. I'm told it's just bad diet and bad blood sugar control. When my mum had cancer the first time, she was told it was just a bad case of hemaroids by her GP initially. So it's not like doctors don't mistakes.
     
  3. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    How do I persuade the hospital or GP to get my dad an MRI scan on his brain? I'm sure they will find something. Should I just get the money together and pay for one privately somehow?
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    hi @AztecCamera87
    I wish I had some 'answer' for you ... as his child, you clearly know your dad well and are very concerned about him ... after hospital visits and all the intervention, I wonder why medics won't consider looking into potential dementia

    you did say that when you backed off a little they began to support more, maybe that is one way, ie tell them that you have done all you can and have to concentrate on your own health and welfare issues, so they have to deal with your dad on their own, and the crisis it looks as though he's heading for

    maybe also consider how you approach visits in hospital so rather than trying to keep your dad settled, press a few of his buttons so they see how he is when not in 'host' mode ... sorry, not a pleasant suggestion

    would your dad go through with a scan if you paid for one, I can see a scenario where you end up with a bill for a failed appointment

    do you keep a log of your dad's behaviours so you have detailed evidence for anyone who will consider what you are saying

    sorry again, not really helpful
     
  5. imthedaughter

    imthedaughter Registered User

    Apr 3, 2019
    56
    Can you make a telephone appointment with his GP to discuss a memory clinic referral? We are trying to get one for my dad but they had to rule out any other underlying issues which may cause symptoms e.g. high blood sugar, infections etc first. Having said that, until the blood sugar is stabilised they won't assess him so if (when) this continues you will be able to say 'Blood sugars have been stable for some time and his behaviour is still XXX so we need to look at memory clinic'. it doesn't solve your day to day issues, but let his (and your) GP know you aren't coping as this is important information.
     
  6. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    My dad has a memory clinic appointment in July. His GP is his long term GP and was also my mum's. She felt incredibly guilty over failing to initially diagnosing my mum's cancer. And she really does seem to care.

    But my dad whizzed through the pre-assessment. Due to his ability to flip a switch around medical professionals. It's blood astonishing seeing him draw perfect pictures and write perfectly, considering he had struggled to write shopping list items 3 hours before hand!! But she still reffered him on the basis of the letter me and my sister sent her.

    The doctor I spoke to in hospital still feels the high blood sugars are to blame for the delirium. But agreed that he is confused, as my dad thought she was getting him coffee 5 minutes after she saw him.
     
  7. imthedaughter

    imthedaughter Registered User

    Apr 3, 2019
    56
    Very strong host mode there! I imagine memory clinic have ways of getting around this? I'm glad you at least have an appointment. My dad did pretty well in the Dr's memory test too (no drawing though) although you could clearly see he was making a huge effort. Afterwards in the waiting room while waiting for my brother to get the car he was hugely confused (and aware he was confused). Like his brain had to have a break and had dropped everything. Sorry this isn't much help in the meantime. Someone who has had a memory clinic assessment would be much more useful here!
     
  8. Nikko

    Nikko New member

    Jun 15, 2019
    1
    Hello,
    Hopefully my experience may help AztecCamera87 and others.
    I finally got my Dad (& Mum) to go to have an initial assessment with the GP in October '18. My dad had been stopped by the police for not having any insurance (he forgot to renew, also discovered that the GP had written to the DVLA saying he shouldn't drive in 04/2017). I crook-locked the car and told him he had to convince the GP to get his licence back. The GP was good (he had been trying to get my Dad to take a memory assessment for a while). Dad still 'passed' 25/30. He was referred with a high-functioning notation. Dad still won't admit he has a problem (and was very angry as well). Memory clinic appointment in Jan '19 (he scored 68/100 ~ passmark is 82). Dad was diagnosed with Alzheimers. The memory clinic will ask for your input on various issues, ie what he is capable of etc.

    For their safety we (my hubby) have set cameras in the house as M & D were forgetting to shut / lock the external doors. This has expanded to front room, back room, kitchen, hallway, landing. Cameras have baby cry so this helps with identifying any distress. We also fitted 'Ring' cameras in front & back, as well as the doorbell. We 'share' the monitoring with adult children & brother. This may sound like big brother house, however it protects them from all sorts. We only keep certain clip to support certain issues.

    I found being persistent (read bloody minded) and making written notes in front of health professionals / recording on your phone etc will provide supporting evidence. This helps build up a pattern that you can substantiate, and they should see you are serious in tracking everything.

    You may find cameras will help identify if there is additional eating of the wrong food, and if not you have the evidence to refute, their claim.

    Mum's been diagnosed in May. Personally I think there are aspects of vascular dementia with her. That's another mountain to climb. The LPAs have just come through. You may think about starting the process sooner rather than later as it is time consuming if you haven't already.

    I hope that this may be useful
     
  9. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    Thank you everyone for your great input, it's really much appreciated and I'm taking it all board. The LPAs needed to be sorted asap and will be.

    Dads still in hospital, his blood sugars are still out of control. I had to attend an odd meeting with a doctor (who has only seen him once) head diabetes nurse at the hospital and one of his lovely district nurses. It lasted an hour, the diabetes nurse was just berating us. Telling the district nurse that they are just doing his insulin wrong (they're not), telling me that his food is all wrong (it really isn't). That I need to be ensuring he is looked after as in the hospital his blood sugars are fine (they were on sunday only). I told her his last reading at 12 was 26.2 (she didn't care). The district nurse explained he is only seen by certain nurses with complete training administering insulin. Basically, we were told that there was nothing more the hospital can do, dad will be sent home on Monday. And if he's back he will have to go into a care home. I asked about my dads obvious confusion, it was dismissed. I took dad back to his bed. I asked what the meeting was about, he just said, "they want my blood sugars to get better." And then asked "when is your mother getting here, it's been a couple of days".

    It was very odd.
     
  10. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    My dad is home. We have a confirmed memory clinic appointment on the 9th July. He's been asking about mum again. Maybe he's just missing her and can't put things together in his head. I worry so much he will pass the clinic. But he's really not the same person he was a year ago. I'm full of sadness
     
  11. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    A brother of mine, who has struggled with mental health issues, kicked off at my sister today, he tried bringing my dad into it causing him distress. He doesn't recall exactly what happened, but he is upset. I wish things were easier. I think he's much later non in dementia despite no formal diagnosis.
     
  12. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    Last night I came home from work, the oven was left on, dad had obviously decided to make himself a second dinner (forgetting he had the first). He managed to cook it, but the pan had burnt food on it and house was smelling like burnt food (although thats probably because he hadn't realised the oven was still on).

    I checked the carers book, it said she met him outside the house, for whatever reason (he had a lottery ticket in his wallet, so probably went to buy one from the papershop which is a short walk away) he decided to leave the house at somepoint in the afternoon, he didn't have his keys or phone.

    He was sitting on the couch, forgetting he's not supposed to, as he has a seat to sit on with a special cushion for his incontenence. He was a pain all evening, telling me I didn't want to feed him, refusing to get changed and refusing to go to bed... but we got there in the end. I managed to eat some dinner myself at 11pm. It only seems to be at night he becomes this way.

    I was up at 6am to check his blood sugars and wash up the burnt pan from the night before, they were fine (actualy they've been pretty good for a few days) so I didn't need to do any extra insulin, Luckily dad seems to want to just sleep in the morning, so I managed to get myself some porridge and get ready for work.

    The district nurse arrived around half 7, dad's bed was drenched with urine (we have been putting on two thick incontence pads at night time which still isn't doing the job), he has been refusing to wear the temporary catheter thing at night (the one that you put a condom type thing over the penis and it takes the urine into the bag). To be honest I do not wish to fight him over this every night, but I think we are going to have to. His blood sugars were fine....

    I got an email from Age UK, as I had asked them that we need help with forms etc. They told me, they couldn't help for the next 6-8 weeks, but would put us on a waiting list.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,655
    Female
    South coast
    Oh good grief @AztecCamera87 you must feel like screaming.

    Good that the appointment with the memory clinic is next week. Before you go write a letter explaining all your concerns - leaving the oven on, burning the pans, going out with no key or phone, incontinence, extra confusion at night, asking about his wife, thinking he has not eaten etc etc. Make it a factual letter, saying - this is what he does. Hand the letter discretely to the receptionist when you arrive and ask them to give it to the doctor before you go in. This will give the doctor a heads up about the problems.
     
  14. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    Last night my dad was pretty much more with it than any other evening and much more cooperative. He didn't insist he hadn't had any dinner, but did ask for food (which is fine, a couple of crackers with butter and a cup of coffee did the trick). He agreed to wear the temporary catheter thing, but he took it off during the night at somepoint. He didn't want to wear any trousers (don't blame him it was very hot last night). He seems to be refusing to drink any water! I think because of the incontenence, but the problem is he's not replacing enough fluid. However, he's willing to drink a bit of squash drink (i don't know why, but he only seems to connect water with peeing and not any other drink, hence why he asks for coffee).
     
  15. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    Busy day. Me and my sister had to go to arrange my mum's ashes internment next August (on the anniversary of her passing). But we had the call we dreaded from his carer. Dads gone missing! He's probably gone for a walk to the shop, unaware his carer and nurse were coming over to see him. I'm on the train back home. So fingers crossed everything is fine!
     
  16. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,993
    Female
    Chester
    I hope he's found soon enough

    I've seen others post that coffee makes incontinence worse and is best avoided, although some fluid is better than no fluid.

    Other tricks used are jellies, ice lollies, ice cream,. grapes (can be a choking hazard in some) and other watery fruit
     
  17. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    I don't mind giving coffee as I know dad will drink it. And I couldn't imagine the uproar if it was taken away! The squash trick seems to work. Dad only refuses water specifically. Dad turned up, he went to the shop to buy a lottery ticket and matches. But we were very worried as the stove was turned on for unspecific reasons! I was meant to be seeing my girlfriend this evening, but I've postponed it for tomorrow. She was understanding, but it's difficult for when I change things on short notice due to her ASD. I'm finding things rather difficult. On Friday I had to leave work early to pick up his prescriptions.
     
  18. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    43
    I hope people don't mind me spamming this thread with messages all the time, they're just a general thread of thoughts most of the time.

    This morning was rather sombre, preparing for mum's final move, a year after her death. It's a bit of a trek from home, dad doesn't know what's happening. Do we take him? I want to, but would it just be too confusing or too much for him. We have a month to work that out I guess.

    I haven't told dad what is happening on Tuesday. Well, it doesn't matter, as despite the reminders he keeps forgetting we have 'a doctors appointment'. I'm feeling apprehensive, I've taken the advice here and drafted a dry letter factually talking about what's been going on.

    Why do I care so much about diagnosis? I don't know, closure maybe? It wouldn't make much difference to the situation, but at least a diagnosis would make me feel at ease.

    And what if he passed? I don't know, I would feel pretty lost and more confused. I've been feeling weak of late, but I guess it's not about me. But maybe my search for diagnosis is selfish in some ways, because does it really make any real difference for dad. No, not really.

    He asks for mum constantly, but I know it's because he's just lonely. He misses her, but can't work out why she's not home. He just tells me she's giving him the silent treatment again because of an incident that happened back in the late 90s.

    I appreciate the responses I get here. It helps to realise so many have or are going through the same thing. But I increasingly feel empty inside. My dad is a shell of the man he once was. I hope I don't go through the same thing, I won't have any children to hold my hand.
     
  19. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    34
    I have been following and reading your posts, it helps me sometimes just to type/write things out. My Dad is 60 and when he was diagnosed he was already past the stage of understanding what was happening. To me a diagnosis was important but ultimetly makes no difference to how we love him but it obviously helps from the treatment side and in ways life could me made a little more comfortable for you all. We’ve had to fight for things but my Dad is declining exceptionally quick and I will fight as long as I have too for him and for anyone else going through this horrid time. I too don’t have any children, just a husband and dogs and I fear the same as you but Keep doing what makes things easier for you, typing out your thoughts, talking, whatever that may be.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,655
    Female
    South coast
    Its your thread Aztec, so you can post whatever is helpful to you. Lots of people have longrunning threads that they use to offload, keep as a sort of diary, or even just vent.
     

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