New to this any advise welcome

Discussion in 'I care for a person with dementia' started by Popscarer, Feb 8, 2016.

  1. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    So here goes...I became my father in laws full time carer in October. We have suspected dementia for some time then a sudden decline in October saw him in hospital for 2 weeks. He had suffered with high bp for years and prostate probe. The hospital diagnosed vascular dementia along with a large aortic aneurysm and bp so low go couldn't read it! He also has kidney probs. He now can't be in charge of his meds and relies on me for meals and all other daily chores. Up until a week ago we had a great routine and he was doing well providing I stuck to a routine. Then last week he started just staying in bed 20 hours plus. After 2 days he refused food. Here we are a week later and I can manage to keep him up for a max of 20 mins but he's not eaten since. He will manage an ensure drink but under duress. His need to be in bed appears desperate, he announces it and is very determined. He keeps this up until he actually goes up the stairs. Often he will just lay in bed and although I am getting him up regularly he is almost repulsed by food. Using many excuses not to eat. He will suck a sweet for a min or 2 then puts it on the table. Go returning Tomo to do bloods etc. Anyone else in this situation?
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Heilo Welcome to TP.
    It is most unusual that you haven't had any replies.
    I am sorry to hear about your Father, it's so worrying when this happens.
    My mum took to her bed, I'm pretty sure it was because she felt safer in bed. If she had an infection she would either be hyper or sleep for England, so I'm wondering if your Father has an infection, UTIs or chest infections are the usual culprits, so if the GP hasn't been before you read this it would be a good idea to try and get a sample of urine to test.
    I'm also wondering if your Father could have a problem with his mouth and that is why he doesn't want to eat, can you see if dad will let you look in his mouth just in case their is something obvious you can see that might be causing problems.

    Some people with Dementia (PWD) are unable to eat proper meals and need a little and often approach and or finger food. I do sympathise I used to have the Devil of a job getting Mum to drink.

    I'm also concerned that your father could be at risk of developing pressure sores as he feels the need to spend so much time in bed.
    If you have community nurses coming in they can arrange for you to borrow a special airflow mattress and lots of other items you may need including an all singing and dancing hospital bed, mum's one was a god send. If you don't have district nurses coming in, th GP can arrange for the occupational therapist to visit who will organise the equipment you may need, apologies if you already know this.

    Please let us know how you get on.
     
  3. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Thank you for your reply. I was trying to not make my message any longer than it already is so I've left out some of the details you have mentioned. I am always on the lookout for uti as he's had 2 in the last 3 months so I've got used to the signs but this is different.
    When this spell started on Sat 30th he has woken as usual but with a swollen wrist. It wasn't bothering him but I called gp to the house on monday 1st. By that time he had slept quite a lot more than usual. Gp said poss cellulitus so gave him antibiotics but later that day said he thought possible injury as he then developed some red bruising further up same arm. I mentioned sleeping and he gave him some antidepressants. Anyway, swelling went down but we took ab's so that's prob ruled out any inf anywhere. I've checked his mouth even using a gloved finger but nothing out the ordinary but have managed to get a dentist to the house later this week to check just to be sure. Gp is coming today to do blood and urine tests so we can rule everything out. He seems to think he's had some kind of episode that weekend that has sent him into a bit of a spiral. Disconnection from food and some depression causing vicious circle. He has told me he feels desperate to get in bed but he's not even sure if he's tired. It's like he suddenly can't focus on anything. Conversations last 5 mins before he makes a demand for bed then continue until he gets there. I'm now saying "yes you can go whenn you have this drink" sometime it works other times he says he's full up! Thanks for all your suggestions, even though we have tried or thought of them all, it's really reassuring. Any more tips? I'm thinking depression is playing a big part in his decline? X
     
  4. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Sorry meant to say also I've had some equipment delivered already so he's on a bed pad for sores although he seems to turn a lot and is up to the loo frequently so I'm not too worried yet but will look into changing his bed as I've been told it's too low anyway. Also I am expecting food changes and he has appeared to get some food caught when swallowing a few times but not enough for me to make drastic changes to his diet although I do wonder if that has scared him. I've also noticed him spitting in the toilet as if he has too much saliva when I asked him he said he was clearing his throat and his mouth was sticky. He's always loved his food and looks forward to bacon and eggs etc so this sudden lack of interest and not even knowing he is hungry has come as a shock as we were doing so well I wasn't expecting it so soon
     
  5. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Just an idea; until you have figured out what is going on, how about serving him some food when he's in bed? Something that he can manage whilst not in the best position for eating? High calorie nibbles (cheese, small sausages) maybe as you might give a toddler, which are finger food so more manageable? Tasty little pots of things that are easy to eat like trifle?
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    Ask for a SALT referral.
     
  7. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    I did give that a go as a last resort a couple of days ago although I don't really want to encourage it, but he flatly refused but he got up! Still wouldn't eat it. Gp has been, bp was high 180/30 and he's on meds to raise it as it was so low last year so been advised to stop those for now until tests come back then go from there. Sleep is less today small 10 min breaks where he comes downstairs so I just keep him as stimulated as poss but no sooner I do something he demands he goes back! I think as well as the dementia there is definitely some depression in there as he's making comments about his life and how not much goes on anymore so he may as well go to bed. Lots of things have been suggested for a while but he makes excuses, "when the weather is better or not today" He's not really been out unless he was taken for spots in more than a couple of years always content with tv and the odd visitor. He's done a very good job of managing as far as anyone could see which makes me think we are further down the line with his dementia than we thought.
     
  8. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    what is SALT?
     
  9. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Had to share with people who will totally understand me doing a happy dance in the rain just because he ate a crumpet!!
     
  10. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    I do hope the crumpet dance brings on a flurry of other food dances. Xx
     
  11. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    SALT is an abbreviation for speech and language therapist . If someone has difficulty swallowing there is an increased risk of aspiration which in turn could be extremely dangerous . The therapist will test the swallowing and may use thickened fluids and textured diets to aid swallowing to avoid aspiration . This type of assessment is used following stroke and increasing signs of dementia . Hope that helps . Best wishes . Lou
     
  12. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Thanks Lou I'll look into it
     
  13. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    I'll keep you posted!!
     
  14. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Quick update...gp found bp to be 180/30 so stopped steroids for his kidney. Bloods came back clear but dentists visit to the house today revealed a huge sore hidden at the back so this has definitely attributed to his lack of desire to eat! It's such a minefield of many issues but gradually ticking them off so hoping for some improvements. Also bought a second hand wheel chair so hoping the sun shines for a few more days so I can convince him to come out! Feeling positive
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,020
    Yorkshire
    Hi Popscarer
    you've really made progress - well done
    hope the wheelchair gets lots of use
     
  16. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Ah thank you. I'll try anything!I just want him to be as happy and as well as possible. I'm trailing the chair tomorrow so watch this space
     
  17. Popscarer

    Popscarer Registered User

    Feb 8, 2016
    12
    Quick update...antidepressants seem to be helping, FIL is much brighter in himself. Unfortunately his eating is very sporadic. He doesn't appear to acknowledge hunger. He gets up when I arrive but very determinedly goes back to bed asap. Nothing catches his attention. All possible physical issues have been explored. His reasoning is its his privilege/right to go to bed as he's worked hard all his life. Nothing me or gp says will thwart him it's a constant battle and he likes to be in control. My next challenge is getting him out for some fresh air!
     

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