1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    My wife will still not go to the doctor and I have noticed some other symptoms she has, gave her a bottle of juice the other day and noticed her hand was shaking as she poured. When we go out she goes to the toilet before we leave but about 90 min later she wants to go again, she is overweight and I suspect diabetes.
    Now I have noticed a strong aroma in the car from the seat, I think she is leaking fluid but not urine.
    Finally she is sure there are spirits in our house who she can see, she was missing two of her rings last night and would not go to bed until they were found, after searching everywhere found them under pound coins in her purse, this morning she said one ring was missing so again searching, after an hour found it in her handbag.
    She was in a very bad mood this morning even after I found the missing ring finally she cheered up and we went out came in and had dinner, she went to lie down then about 21:30 came in the lounge in dressing gown looking for something, I offered to help but she got angry asking who had taken things from the drawer beside the bed, I said I did looking for her ring, I was all empty boxes of night nurse that she uses to sleep so I removed them.
    I can hear hear now opening drawers in the bedroom looking for who knows what.
    She wants to leave and live on the streets to escape th spirits in the house who are moving her rings, I feel like giving up.
  2. chickenlady

    chickenlady Registered User

    Feb 28, 2016
    Ask her GP to come to the house to do a home visit, call the surgery and tell them she is agitated, more confused, you're worried she may have a urine infection but she's so paranoid that she won't go to the surgery. These worsening symptoms could be a urine infection, out of control blood sugar or early signs of sepsis. Don't worry about getting her permission, call them first thing tomorrow to put your mind at rest and to get some help.
  3. Agzy

    Agzy Registered User

    Nov 16, 2016
    Moreton, Wirral. UK.
    Sounds similar to my experiences and OH refusing to go for tests and situation complicated in that we are not married. Eventually I wrote a detailed letter to her GP saying I knew I would not get a reply but asked them to tell her she needed testing if, after they had seen her, they thought she needed one. Thankfully this they did and, four years ago she was diagnosed and placed on Deneprizl, and what a change in her. The bad moods lessened and she got some sense of humour back and it seemed 18 months had been rolled back. There has since been a slow decline and her anger and the nasties as I call them do happen now and again but it has given me time to come to terms with it and to plan for an uncertain future with her.
  4. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    My OH is always looking for things. Glasses, hearing aids, wallet. He said he had list his shaving kit I found it and he insisted it wasn’t his. He never recognised things even when I find them.
  5. paddiwak

    paddiwak Registered User

    Dec 14, 2015
    I agree with the others, you do need to contact your doctor, either by telephone or write a letter listing all your concerns. I did this in the early days of my OH's dementia and once the doctor and surgery knew our problems they were always very helpful. So PLEASE do contact them and ask for help or you will end up with a breakdown. There is help out there once people concerned know you need it. Also contact your local Carers Together, they are extremely helpful and also hold social events, like lunches, that you and your wife could go to then you could talk to others having the same problems. It always helps to talk. Good luck
  6. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I've not heard of Carers Together. Are they anything to do with social services or are they independent?
  7. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    Thanks once again for all the kind replies, makes me feel supported.
    I have got an appointment for her with the senior GP for next month, managed to get her to a drop in center yesterday for a cystitis check, disaster, after a three hour wait the nurse asked for a urine sample, my wife went into the ladies then I hear a scream and go in she is facing the wall at the toilet squatted down unable to move, she is very overweight and unable to get up from the floor but I manage to get her up, the nurse enters asking is everything ok.
    My wife is very upset so we leave, she can not understand how to take a sample, I have bought a small bowl and told her we can place it on the floor in the shower and she can try to get some in the bowl.
    She keeps asking what is cystitis and I explain but later she asks again, it wears you down keep repeating.
    Hoping to get a sample of urine tomorrow and try another drop in center on Monday and get some antibiotics
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
  9. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    We did get an emergency appointment at our GP's, managed to get a sample to take, on the way she was in a bad mood and wanted to go in to the doctor alone. As I waited outside the lady doctor came out asking for me so i went in, she said my wife seemed confused, she had taken her BP and it was a little high and my wife tried to explain white coat syndrome that I have.
    now sitting down to the side and a little behind my wife the GP asked my wife how is your memory, my wife answers fine, I am shaking my head and the GP looks at me surprised so my wife turns to me, this is where I made my big mistake i should have told the GP how she gets but i did not want an argument so remained quiet.
    Wife got the anti biotics and I had to make sure she took them as required, next day she had forgotten why she was taking them.
    The last few days have been bad, very bad tempered in the mornings, in the end I go out and return after a couple of hours but she is still in a bad mood most times, yesterday she had picked up and we went out ok but this morning (which is our 50th anniversary) she is back in a mood talking of divorce.
  10. ellejay

    ellejay Registered User

    Jan 28, 2011
    Its difficult to speak freely to the Drs when your partner is with you, so it may be helpful to write your concerns & anything you would like the DR to know & get it to them before your appointment. That way they will understand the problems and your wife wont get upset. Even if she insists on going in alone, the Dr will still have your information.

    Lin x
  11. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    I had an appointment with the senior partner in December and told him all my concerns, after the above we had another appointment with him but he only checked her BP and told her it was ok and that she did not need to give blood samples if she did not want to.
    Her short term memory is getting worse, this morning she was in a usual bad mood talking of divorce then she said she had lost a ring, this is common, she has seven large gold rings and wears four and keeps three in her bag.
    So I start to look in all the usual places but nothing so she finally agrees to have some lunch and go out but has pains, from what she says i think the cystitus has returned, we have to stop so she can go to the toilet, we go to Boots and i ask what they think and they advise an emergency appointment with the GP, we get home and she rushes to the toilet.
    I suspect because she is obese she wipes from back to front but when i ask she can't remember.
    I sit down after starting dinner feeling worn out and she says why am I miserable, I explain looking for her ring for two hours has been wearing and she says why did you remind me about the ring (it cost £1000 thirty years ago) but hey she has gone to bed in a good mood, I am back to drinking too much wine and writing this.
  12. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    Bad day, breakfast ok then downhill she was sitting in the next room ranting about wanting to kill her parents (who are long dead) and all gay's should be killed (she believes i am gay, I am not) In the end i go out for two hours, when i return she is improved and agrees to go out in our car.
    We buy some food then go to the seaside at her request, she wants to do more shopping then buys food we do not need ( I remain quiet as it does no good to try to explain we have that already).
    We get home and she is still good but as I prepare dinner she deteriorates and after dinner goes to bed, after 20 minutes returns looking for rings, I offer to help but she refuses goes out and returns 10 minutes later still looking, again I offer help and again she refuses.
    At this point i loose it and tell her she is loosing her memory, and at this point she finds the missing rings and goes to bed in the huff.
    She has just returned asking who is the woman giving her cheek as well as me, I tell her there is no one else in the house and she shouts "it's a set up" and she will call the police tomorrow.
  13. huggie

    huggie New member

    Apr 29, 2019
    You are obviously having a very rough time. Why not book an appointment with her G.P, but go on your own and explain the whole situation. Then when you can get her to see the doc at a later date, they will be up to speed on all the background. Also try keeping a record of whats going on and take it to the G.P as evidence. Can only help your situation as you cant continue as your going because it will make you ill with all the stress. Make sure you look after yourself as you wont be any good to your OH or yourself if you are ill. Speak to your own G.P too so you are also looked after. I hope things calm down for you soon x
  14. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    Managed to get her to the appointment with the GP, a nice young lady who managed to charm her into taking a memory test, she did not know the year, month (thought it was early in the year), asked her to remember a name and address and then to say the months of the year in reverse, she managed most of them missed out the summer months but then when asked to remember the name and address she asked the GP do you mean my address, the GP tried to help her but she could not remember any of the one she had been asked to remember.
    The GP said she would arrange a visit to a memory clinic but wanted her to take some bloods with the nurse, I mad the appointment but on the day she refused to go.
    I do not think she will attend any appointment for bloods or the clinic she is very anti being checked
  15. dogdayafternoon

    dogdayafternoon Registered User

    Dec 30, 2017
    As I thought she refused the memory clinic, the GP phoned about another problem she has and then asked her why she cancelled the memory clinic, she went ballistic saying she has a fantastic memory and that she is an academic, after the call I had two hours of her saying the GP thinks she knows better than her.
    Yesterday I found a letter from the hospital about a brain scan that she has not opened, it is for next week but again I am sure she will refuse to go, do I try to make her go or do I cancel as these appointments are hard to get.
    Today has been bad she was in a bad mood that got worse, we went out for a drive but she got even more upset saying she wants to leave and repeating some strange story about other people being in our house trying to steal her rings and that I must have let them in to try to get her to leave, when i tell her no one has been in our house she says it's a set up.
    My wine consumption is going up.
  16. Imstressedout

    Imstressedout Registered User

    Jun 6, 2019
    What a nightmare you poor thing.

    I can’t help really as my dad is the dementia-sufferer and I live miles away so am spared the day-to-day awfulness my mum has to put up with.

    I know my dad was allocated a “dementia nurse” (they live in Bristol) who was very helpful. They had a direct telephone number and she visits when they need her. May be worth asking if there is such a provision where you live.

    I can’t imagine how hard life must be for you. You sound like you are doing a wonderful job.
  17. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh dear :(
    Thinking that other people are coming and stealing things is such a classic symptom that its almost diagnostic for dementia.
  18. cuppatea

    cuppatea Registered User

    Oct 28, 2016
    South Wales
    Oh I feel so sorry that this is your life after 50 years together. You must keep a day to day diary, be honest in it, it is valuable in getting a diagnosis. The brain scan would be useful. Is there anyone family or friends who can help get her there? Sympathy to you, this is do hard to bear.
  19. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    I can only suggest, as others have done, that you go and see the GP on your own and explain the whole situation. Now that they have the evidence of refused memory clinic appointments etc they should be able to advise ways forward. Use some of the key phrases if necessary - such as you believe that she is 'vulnerable' and that you are no longer able to care on your own. They will have encountered this behaviour before and there are a range of options.

    Another thing to suggest to your partner is that both of you set up Lasting Powers of Attorney for both health and financial affairs. If she will agree - this is only sensible long term planning for both of you. Ensure that your attorneys are not your partner. Once they are registered you (or whoever the attorneys are) will be in a much stronger position to make decisions.
  20. Agzy

    Agzy Registered User

    Nov 16, 2016
    Moreton, Wirral. UK.
    I have persuaded my OH that we have a friendly but mischievous poltergeist and now we have fun trying to find things ‘it’ has hidden. Not sure how long it can last but has bought the peace.

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