Stages of Dementia - advice please anyone??

Discussion in 'Memory concerns and seeking a diagnosis' started by woodbrooklabs, Oct 23, 2015.

  1. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Hi, I've posted a couple of times here. My dad has had memory issues for about 6 years, with things having worsened especially in the last year. Dads paranoia about people stealing things, namely his neighbour is getting worse. He has contacted police numerous times about this. I've explained the situation to them, so they understand.

    I attended with dad to his doctor couple of weeks ago to get the results of blood tests etc. 6 months ago he would not have let me go near his doctor, but he put up no argument. In fact, secretly I think he was happy for me to be there as the impression I got was that his doctor was a bit intimidating which I now wholeheartedly agree with. Dads bloods all came back clear, liver function, cholesterol etc. Even though dad smokes cigars and drinks, he appears to be in good health in that way.

    Doctor suggested a referral to the memory clinic and told dad he could not be forced and could say no. Well of course dad was going to say NO! Def not going to change his mind about that. For the last few months dad is sleeping quite a bit and has a poor appetite. This week he was in bed from Sat evening almost right through till Tues evening, hardly eating anything at all. Says he didn't feel well, but couldn't describe how he felt. I brought him dinners down on Sunday evening which he says are still in the fridge, he just doesn't feel like eating. He has been saying for about 6 months he has no appetite. His weight is ok, but I suspect it might be the nightly tipples stopping him from loosing too much. He goes to bed about 10pm after sleeping half the day. He was always a night owl and sat up till 2/3 in the morning. He needs new shoes, but seems to have lost the ability to actually go out and buy a pair, so that's my weekend mission. It is the sleeping and lack of appetite that is concerning me. Is this just a symptom of dementia? Seems I am not going to get a diagnosis anytime soon, so will have to muddle along for now. Also his personal hygiene isn't great. He said to me last week he hadn't washed for 3/4 days and was his face dirty. I had a giggle into myself, but its not really funny. His trousers have holes, even though he has new ones in the drawer, he wears the scruffiest things. Again another symptom?
  2. marionq

    marionq Registered User

    Apr 24, 2013
    On a very practical level you could tell him that the Memory clinic may be able to,prescribe medication that would make him feel better but he has to go first and get a diagnosis.

    This would result in regular checks by a CPN who would be able to make recommendations for further help.

    Stay with him while he has a shower and shave and while he is in there throw the trousers with holes in the bin and leave out clean clothes then tell him how smart he looks!

    See if he would be willing to try a day centre for company. This might help his appetite too.
  3. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Marion, thanks for your reply. I'm a single mum working full time and at the moment I only get to see dad twice a week, though I'm on the phone every day. Just actually off the phone and again he says he has no appetite. He went to Tesco and got himself Lucozade to see if it would give him some energy and away off to bed he goes again. I have a brother that lives in England (I'm in N.Ireland) and I get a text once every few months asking how dad is. He is no help whatsoever. Dad has 2 sisters who both have health problems, so I am the only one that sees to him. His neighbour/friend did keep an eye until dad started accusing him of things, so he understandably won't go near the house.

    Will be calling tomorrow/Sunday to bring him food and paint his front door. My relationship with dad has only really been building this last couple of years after learning of his mental decline. He has been in and out of my life from I was 2, I'm now 40. So I don't want to overstep the mark by insisting on things he isn't comfortable with and making him more suspicious and anxious. Its all baby steps at the moment. If he is still feeling this bad next week, it will be another mission to try and get him back to the doctor. I think he is starting to trust me a little more and I will get round to the hygiene/trousers etc once he gets over this sleeping/not eating episode. This is a new part to his foibles. My dad was never a great sleeper and loved his dinners. All he seems to eat now is fried food from the café in Tesco, even though I bring him cooked meals.
  4. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Everything you are describing could be attributable to dementia, but other conditions need to be ruled out first (sounds as if they have). You could be describing my mother-in-law with the not eating, inability to shop, personal appearance issues. People here on TP have different opinions about whether or not it is worthwhile pursuing a diagnosis. I would say, yes, it is worthwhile. There may be some medication that will help to stabilise his condition. There is also support out there, some of which is dependent upon getting a diagnosis.

    Try again to take him to the GP, maybe in a couple of weeks, perhaps with a different tack. Try contacting the GP beforehand to explain your concerns - maybe suggest to the GP to be a bit more assertive about going to the memory clinic. One of the first symptoms of dementia is the loss of ability to make rational choices - in the gentlest possible way, it sounds as if your dad needs to be told now, not asked! You could tell your dad a 'love lie', that the appointment is for a general check-up or something.

    My mum-in-law is fiercely proud, independent, stroppy at times... we've had all sorts of issues getting her the help she needs. But like your dad, secretly she really does appreciate the support she gets with doctors' appointments. We've only just got a diagnosis of Alzheimer's for her, 3 months after first asking for a referral. It took a while, but I'm glad she is at last on their radar.

    Good luck, do write again and let us know how you get on. xx
  5. balloo

    balloo Registered User

    Sep 21, 2013
    sad to say but a diagnosis may not get help, my MIl was diagnosed 3 years ago and we have not seen anyone form the memory clinic since as Vascular demenia has no medication to slow it down
  6. john51

    john51 Registered User

    Apr 26, 2014
    Dunstable, Bedfordshire

    I actually have a diagnosis of dementia.

    As I read your post, I quite understood your concerns. A couple of things ocurred however.

    It wasn't very helpful of the doctor to point out that your dad could refuse to go to the memory clinic was it? Usually doctors phrase things so that there is an expectation that they will take the doctors advice.Does he really have an agenda here? Does he see his budget disappearing perhaps?

    On a more positive note, on bad days (which can follow on one from the other at times) I'm not so good on the personal hygiene. My wife sometimes has to go away for work. She uses various things to help; a note on the front door I see as I go downstairs and a checklist in the bathroom, alongside a basket with everything I need in it helps.
    She also sends me text messages and sets up reminders as alarms in my phone.
    Would any of these help?


  7. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Thank you all for your lovely replies. It really helps getting another perspective on things.

    With regards to dads doctor he is the most unhelpful man. I have been in contact with him for 2 years regarding dads issues. He just kept insisting that I attend with dad. Easier said than done for someone who doesn't realise there is a problem and is suspicious of everyone. It has been a long hard road getting dad to go for blood tests and little white lies, getting out of work to remind him about appointments etc. It took every ounce of will and persuasion with my dad to actually attend the doctors with him. I think it was disgraceful for the doctor to say, 'Now Mr *****, you don't have to go to the memory clinic, none of us can force you, its your decision'. He repeated this about 4 times. Obviously dad was going to say no. Had he went ahead and referred him, I could have maybe persuaded dad to go. I didn't get the option. I did say to dad that he could get medication to help with his memory etc, but he doesn't like taking medication. He has had a sore shoulder for a few years after a car accident and won't even take painkillers.

    Went to dads on Sat and Sun and he seemed a bit more awake and managed some cereal. Still sleeping loads.

    Balloo thank you for replying to me. You seem to be coping well with the help of your wife. Great that you have the insight to accept there is an issue and are getting along with things and doing great by the sounds of it. Dad can just about ring me and answer the phone, not to sure about text messages. I have mentioned his clothes, shaving etc, but he just dismisses me.

    If dad continues with the lack of appetite and sleeping so much, I will really try to get him to go back to the doctor. He thinks that his forgetfulness etc is a result of not working and being bored. His house is a mess, full of unopened diy stuff, papers and notes everywhere. Have tried to help with this but it is futile as I can't get rid of anything. At the moment I just want to make sure he is eating and keeping warm. He also is driving which concerns me. He has had 3 accidents in 5 years. His car was wrote off 2 years ago which was a blessing as being a taxi driver meant he had to give up work. I was worried he'd have a serious crash with passengers. He got another wee car in Feb this year which he has bumped couple of times. Though think he is driving less now, purely because he is sleeping so much!

    Sorry for the long post, but it is great getting advice and having someone that understands. I am basically on my own looking out for dad. My brother is away and never even phones to check how he is. Dads 2 sisters have health issues and can't deal with him anymore after numerous arguments. My mum and dad divorced when I was 2 (now 40), so I am all he has really.

    Thank you.x
  8. Sterling

    Sterling Registered User

    Jun 20, 2013
    I would try to go for a diagnosis as I am with my mum. I took her to A & E on Saturday in a very very stressed and confused state - her not me ;) the Crisis Dementia team would not help as she doesn't have a diagnosis. I explained that she would not go anywhere near mental health services and had point blank refused to go. Like the chicken and the egg situation, if there is no co operation,how do you get the diagnosis without having a crisis? She ended up being sectioned in the end.Hopefully now she will get the full works and we will get a much clearer picture of what is going on with her.
  9. JayGun

    JayGun Registered User

    Jun 24, 2013
    Would you consider changing doctors if you're not getting anywhere? My MIL sees a kindly woman doctor whom she is comfortable with and who has taken the time to get to know MIL's foibles a bit so she knows how to manage her behaviour. At the beginning the doc was like a deer in headlights while MIL rampaged and ranted. Originally she was seeing an older male doctor, but she wouldn't tell him anything and he wouldn't lidten well enough to winkle out the sense from all the nonsense. They're both in the same practice, but you can choose who you see.
  10. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    Maybe mention when you go to the doctor next time, hopefully a different one in the practice, that he drives and your worries about that. He probably shouldn't be especially with sleeping so much as may do that whilst driving, not unheard of.

    Maybe he isn't eating the meals you leave as he has forgotten how to hear them up? My parents both have dementia but mum can't operate the microwave to confusing and dad can't read the numbers!

    When you say you can't get rid of anything I presume it's because he won't allow you to, this may also be part of the dementia. Have you pointed out that if e ate more he wouldn't sleep as much, I know I do to my Mum but she doesn't get it. How about getting hot meals delivered to him each day? Some councils do it I know.

    Your brother I would write a letter to and explain in depth how his father is and make him aware that his support will be needed soon so he'd better start getting his head round it. Has anyone got POA for your dad as you should be sorting that out sooner rather than later.

    Would your dad be persuaded by the thought of getting attendance allowance paid to him to get a diagnosis, also reduce his council tax bill! Maybe that could sway him.

    Good luck, don't over stretch yourself and try to shake brother into facing facts.
  11. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Hi, thank you all again. Although dad does feel rushed and a little intimidated by his doctor he thinks he is great. I can't see him changing to another one in the practise and he would not see a lady doctor (old-fashioned)

    Mrsbusy, he can use the microwave. I am leaving him meals which he says he has no appetite to eat. He prefers tins of Heinz Spaghetti or soup. Has totally gone off stew, chicken dinner etc that I would normally make. Thankfully he has retired his deep fat fryer to one of the junk rooms and doesn't seem to use the cooker any more. He gets the odd breakfast in Tesco, well this was before all the sleeping started. On the topic of my brother, I am going to ring him at the weekend and invite him over, maybe at Xmas so he can see dad and the deterioration. He thanks me for what I'm doing, but a little support even on the phone would be appreciated. He hasn't seen dad for nearly 2 years, so I'm sure he'll notice a change.

    Thankfully dad is on the whole not angry or abusive (yet!). What I wasn't sure about either - I often read about people's speech and vocabulary being affected by dementia. With dad however, his speech is brilliant. He could easily fool people into thinking all is fine. He has been a drinker for about 20 years, moreso these past 2 years that he hasn't been working. I think he drinks daily. Read up about Korsakoffs Syndrome and this could be a possibility as well. If I had a diagnosis it would be easier for me to comprehend it all, but I really don't think its going to happen.

    Thanks everyone again. :)
  12. Austinsmum

    Austinsmum Registered User

    Oct 7, 2012
    Melton Mowbray
    Hi Woodbrooklabs,
    so sorry to hear of your dilemma. Thinking laterally, is there any chance he'd buy the idea of day care if you sold it to him as a lunch club? My mum used to go and as her AD got worse her dress sense went completely. She'd rock up wearing her knickers on top of grubby trousers, cardigans on inside out and back to front etc. I stopped caring as she was ripping up her bedlinen and curtains and sleeping on a bare mattress so if she kept the same clothes on 24/7 at least she was warm and she was extremely aggressive to me if I tried to intervene. Bottom line was that she got flagged up to social services and as I was her 'carer' :p a doctor was sent round to interview mum. The GP attempted to talk to mum for about 30 seconds before turning to me and saying "Well. how are YOU doing?" Respite was organised pronto but the manageress cancelled the bed the night before mum was due to go. I nearly had a melt down and within a week things had escalated so much that mum was sectioned, which was the best thing that could have happened. :)
  13. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    I would make an appointment with another male doctor in the practise and tell him his normal one is on a course or on holiday today. If he does see him whilst in the waiting room just say well that's what I was told when I made the appointment and maybe it's been cancelled but we are seeing Dr ..... Instead today as he wanted to see you, so maybe Dr.... (The original one) asked him to. Get a note to the doctor you see before you see him or even email as our practice don't read letters much but emails or phone calls work better.

    Maybe phone surgery, ask for appointment with different doctor but ask him for a telephone appointment that day to discuss things without dad hearing. You have to out think them best you can I'm afraid. Don't hold back with the drinking, and how good he is at masking things etc. he won't eat as much as he's filling up with alcohol instead.
  14. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Help, please

    Well the plot thickens. Dad rang me last night to say he lost his car on Monday. He parked somewhere and couldn't remember and had to flag a taxi down to get home. Didn't know where he got the taxi or what the taxi firm was. Car could be at the shopping centre, Lidl's or one of 2 Tesco stores, or dear knows where! He was only up out of bed last night at 8pm. I drove down to his house about 10 and he was in bed again, so didn't rap him up. Saw a car very like his but dads had a shattered numberplate, this one didn't, so unless he got his fixed. He doesn't know the reg, I don't know the reg. Dad suggested he go to the auction tomorrow night and buy another car! I quickly put this idea out of his head (I think). So, do I ring the police and tell them, ring the insurance company and ask for the reg? Or take dad round to see if its his car. I actually feel sick and couldn't sleep last night for worrying.

    The above is awful, but if and when we get his car back I will be talking to him again about the memory clinic. This is the ammunition I need to try and get him to understand he needs help.

    Mrs Busy, that's a good idea to try and see a different doctor in the practise, will certainly try that plan out.

    Austinsmum, I'm not sure about the lunch club idea. Dad has always been a bit of a loner, happy in his own company. But as this progresses it seems like a very good option. I shouldn't laugh, but I did at the thought of your mums dress sense:) Sure if we didn't laugh, we'd cry or go bonkers! Terrible as it is, I think sectioning the best option all round for everyone involved.

    I have had a few chats over the last few months with a social worker who is really nice and helpful. I was meant to call her after dads last doctors appointment to tell her how it went. She is pretty keen to call out to dads to assess the situation. I don't know how he would react if 2 social workers arrived at the door. If he thought I rang them he would be very hurt and annoyed with me.

    I really don't know what to do next for the best? Any ideas would be greatly :eek:appreciated.
  15. canary

    canary Registered User

    Feb 25, 2014
    South coast
    #15 canary, Oct 28, 2015
    Last edited: Oct 28, 2015
    I think I would contact the police. They will be able to find out who owns which car and they will be on the look out for "abandoned" cars. It also might be helpful to have him on their "radar" in case of further problems.

    edit to say - make sure the police understand that this is probably dementia so that they will record him as a vulnerable person, not a timewaster.
  16. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Hi Canary, Thank you for your message. The police already have dad on the radar hopefully. He has went to the police station about 4 times regarding the neighbour damaging his windows, stealing his washing, cctv camera etc. But yes, it might be a good idea to let them know what has happened. If I knew the reg of the car, I'd know if that wee car in Tesco car park was his. They may be able to call to dads house then and tell him they've located the car. I really wish they would make the call to social services and that would take the blame off me.

    I found dads neighbours wife on Facebook. Dad was friends with her husband from school age, but not now due to the accusations. I've messaged her to see if she knows the car reg, as her husband took dad to the auction to buy the car - big mistake! But he was just trying to help at the time.
  17. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Hi Everyone, I contacted the police yesterday about dads car. The neighbour seen him leaving the house at 10:30. Her husband followed him. He saw dad getting on the bus. So he went to the shopping centre where he thought he'd left the car. Neighbour didn't want to approach him as they have fallen out. Without their help, yesterday wouldn't have happened. I'd been trying to ring him all morning. Finally got him after 2, must have switched his phone on. He was still walking round the car park. Anyway the police found him about 3:30 and brought him home. I left work and went to his house. Police thought they had found the car but said they had to go back to check the reg. They knew it was his car, but wanted to ring me after they left. Car was in the shopping centre car park, but in a place that dad would never dream of parking in and was awkward to get to.

    Anyway they rang me and due to the incident they have to refer him to Social Services. Talk about a huge burden being lifted! Now I can get back in touch with the social worker and fill her in. She can arrange to visit and I won't get the blame. I did tell dad, but understandably he got annoyed, so changed the subject and took him to get his car. He was so relieved. He knows there is a chance he will loose his license but that's for another day. For now I am just relieved that police took yesterday seriously, much more helpful than dads doctor. They were really understanding and dealt with it all impeccably. I know its a long road ahead but finally people are listening to me.

    Thanks for all your help and advice.
  18. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im so glad the episode of the car has been resolved.
    Fingers crossed that the police report to SS will be the start of more help for you and your dad
  19. woodbrooklabs

    woodbrooklabs Registered User

    Aug 17, 2015
    Thanks Canary, hopefully he will get some help in the coming months. He seems to be surviving on cereal and energy drinks (never drunk fizzy drinks in his life). Feeling prepared and ready :) :D
  20. notmymum

    notmymum Registered User

    Oct 29, 2015
    so sorry for you

    Sorry to read your story its hell isn't it? and you feel so useless!
    My mum is getting as bad and still not even got her to the doctors. I would hope dvla will revoke his license but in the meantime maybe it would be worth hiding his keys? I know that sounds terrible but you see on the news people driving the wrong way up motorways etc its just awful. And i honestly think the medical prffession apart from trying to get out of spending the money on treatment have taken this patient rights rubbish far too far and actually are putting patients and innocent people at risk by not stepping in and making sure people like your dad and my mum are safe.
    They don't seem to understand most family members don't want to upset their relatives as they get so stroppy, and even if you get someone like myself who basically takes the approach of 'mum you can be as nasty and stroppy as you like I'm not patronising you by agreeing with this rubbish and you are ill and being selfish' no one helps and infact does everything to stand in your way of helping your loved one.
    To tell someone who is objecting to treatment most days and in denial that they don't have to do something if they don't want is just waving a green flag to let the situation get not only un bearable for the family coping but also damn right dangerous to people not even involved.
    Personally if my mothers doctor did nothing about taking away her driving license when she is obviously not even sure what day or month its is and she went out and killed someone in her car I would push to have the doctor charged for aiding a murder!!!
    I am in the process of getting LPA for my mum so on days of 'clarity' I ask her over and over who she wants to sort stuff out etc, sadly some days she's changes her mind who she does and doesn't want but she always says yes to me being named.
    I don't really want to take sole responsibility but its getting that bad now I am worried if I don't arrange it and get it all signed soon it will be too late to put anything in place. Another worry :(
    shes avoided another doctors appointment this morning, this is about the 5th one in 2 weeks :(
    Its an absolute nightmare.
    The saddest thing is I know from friends and other relatives by the time the end comes for these relatives its a relief as your are just worn out with dealing with all the moods hassle and upset. And that's so sad that by the time you do loose them you end up pleased its over :(

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