1. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    Hi All

    I was wondering if any of you had any experience of a loved one losing weight? My lovely father is in the late stages of Alzheimers. He has been battered by infections (mainly pneumonia) all year but in September he got a double infection, pneumonia and a UTI, was in hospital for 5 weeks and it seems to have had a massive affect on him.

    He lives with me and I look after him full time and I want him to stay with me until the end. This last infection has seen him become doubly incontinent and he has practically lost his mobility (not helped by a pressure sore on his heel) and his appetite has dwindled even further. He was 10 stone 4lb in January then 8 stone 1 when he left hospital at the end of September and is now roughly 6 stone 6.

    I've tried everything I can to encourage him to eat and drink and the GP and District Nurses who visit twice a week are aware of the situation but say that sadly this is quite common and there is very little I can do to change it.

    He is, as the medics say, 'pleasantly confused'. He can talk but is very limited and struggles to understand what is said to him but is happy enough in his own way.

    I'm worried about how much longer this can go on for. Can he continue like this for a long time ? I just don't want my lovely dad to suffer.

    Has anybody been in a similar position?

    Love and strength. xx
  2. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    stoke on trent
    Hi stresshead it's so sad to watch our loved one waste away, it's the same with my dad he used to be 11stone he is now down to 8 stone 4 pounds he does still eat but only small meals, the doctor told me to try and get him eat small but often.. I think that this is just another symptom of this awful disease.. My best wishes exhausted xx
  3. Spamar

    Spamar Registered User

    Oct 5, 2013
    Definately have that experience!
    A few years ago OH stopped eating almost everything. Lived on fresh orange juice and very dark chocolate! Went from 10.5 st to 7.5 st. Nothing I could say or do, and believe me, I tried everything, made him eat. In the end, I gave up. Then he started to want food again, unfortunately, his stomach didn't, so that was another problem. But in the end, we got there and he gradually regained most if the lost weight.
    Then, earlier this year, when his dementia was far advanced, his eating gradually declined. He had a lot of TIAs around the same time, also started to have falls.
    He went into a care home for respite, then I got a tummy upset, so he stayed longer. Then he got an infection, probably (!) chest. He then declined so much, he never left the home. His eating declined, and he lost at least 8 kg. He then got another chest infection, didn't want any food, and died a few days later.

    I always thought that the no eating was a conscious decision on his part, certainly the first time. You will find this is common in people with dementia. All I can say was he was pushing food away, the only way he could make his feelings known. He seemed quite comfortable, not in pain or agitated at all. Calm acceptance, if you like.

    Good luck!
  4. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Hi - sadly I think this is common. I've seen my mam shrink from around 11st (although that was overweight for her small 4' 11" frame) to under 8 stone now.

    Technically she is still in the so called 'healthy' weight range for her height, but to me she looks very thin and wasted.

    There are high calorie drinks and supplements that can be given, if your dad will take them, that a doctor could presribe - things like Fortisip, and I think there may be something called Ensure (?) I'm sure others with more experience will be along shortly to give the correct details.

    I agree, it's horrible to watch the people we love waste away :(. My mam just won't eat anything she doesn't like (fair enough!) and it's difficult to get her to eat enough, let alone healthily.
  5. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Another whose mother has lost significant weight. May 2014 mum was around 70 kilos . She went into care at that time. Now she is around 48 kilos
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    We used Ensure and Ensure plus when the weight loss was significant - prescribed by the doctor. I think it made me feel better because I was actively giving something and i'm sure it slowed the weight loss but not hugely. Worth asking, comes in loads of different flavours so if you do this ask the doc for 'mixed' and then at the pharmacy ask for a list of flavours or the chemist might give you 24 chocolate ones or whatever they can't get rid of !!!!!
  7. hvml

    hvml Registered User

    Oct 10, 2015
    North Cornwall
    Complan is another one - a replacement for a light meal. My support worker also gave me a printout of recipes for calorie enhanced food. A lot of them involved full fat milk with skimmed milk powder added. The nurses should be able to provide you with something like this. They might also have access to a nutritionist, who could tell you more about this. Xx
  8. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Although OH has Parkinson's I still think he is starting the dementia route, but he is down to 7 12 it's just he has no appetite or finds it hard to eat and swallow.
  9. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    Thank you for your replies.

    I do give him Complan and have had input from a nutritionist about ways to bulk up his food however he just doesn't want it. They haven't prescribed Ensure or Fortisip and I think it's because it's expensive and he probobly won't drink them.

    It's so incredibly sad to watch this happen to someone you love. You naturally want to feed them and build them up but you can't make them eat if they don't want to.

    I guess, like Spamar has said, if he gets another infection his frail body will find it hard to fight it.

    I just can't help but worry.
  10. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    OH has had good meals today, small but eaten and we still have sponge and custard for supper. Wheetabix (2), lunch, sausage and tomatoes, 1/2 slice bread, and now two big dollops of mashed pots and some spagetti hoops. Better than last week.
  11. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    My mother lost weight, she was 37 kg. Then we found that she had tooth pain. (Dentist, anaesthesia, all teeth removed) now she is 48kg (2 years later) and always smiling.
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    I am so sorry, this is so distressing for you. My husband had lung cancer and didn't want to eat at various points and I know how sad it made me feel xxxx
    If he really doesn't want to eat then the only thing to do is maybe tempt him with a few sweet things or something he fancies and just treat him. Thinking of you xxxx
  13. HUG

    HUG Registered User

    Nov 28, 2015

    Hi I can only comment from my situation. my mother is in the late stages of Alzheimer's . She has had one bout of pneumonia which was there result of food residue being inhaled whilst a sleep. she was in hospital for 12 days.

    Before this happened however my mother decided that the different tastes on her plate were too much to cope with. Eg carrots, potato, meat, greens. We had been mashing them individually but the meat was getting hard to swallow. I hand feed my mum which she didn't mind. there was a lot of "shall we try carrot? Shall we try chicken" going on. We now liquidise the whole meal so presented in a soup form. instead of gravy we use chicken or mushroom soup which can double the calorie intake.I always say how nice is tastes so she sees me try it. I also obtained plastic baby spoons to feed this gave a manageable amount of food and less harsh than a normal teaspoon. mum drinks through a straw instead of sipping from a cup. Her fluid intake is about 1 litre plus a day. Capri Sun 200ml pouches first thing in the morning. (replace the thin orange straw with a bendy straw). I can squeeze it gently to give mum the chance to start drinks with little effort. She gave up on weetabix because we found it bitty and seemed to stick to the throat. She now has alpro yoghurt with no bits and Frusubin fruit drinks (prescribed instead of fortisip)

    I have a couple of questions regarding the pressure sore on her dad's heel and mobility. How are they being treated? I take it that your dad was bed bound whilst In hospital? Could he weight bear before admittance and can he weight bear now? I am asking because my mum has had heel sores and will happily comment if you wish.

    I'm afraid GP, hospital and district nurses can only give general advice. I have said if my mum is capable of doing it I will find a way? I will not just stop her. The hospital said my mum is frail and we needed a hoist but i kept saying but she was dancing in my arms the day before she was admitted and if you cure the infection there is no reason she is not capable of walking and dancing again. The hoist is in the corner gathering dust and mum is walk around as before. We however every now again have a swing session just for fun!

    Sent from my iPad using Talking Point
  14. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Hello stress head . It must be very difficult to watch you dad's nutrician state become worse . Unfortunately as many of us know it sometimes goes hand in hand with this disease . However I do not believe that we should just accept it . You say your dad is happy in his own way . Does he say he is hungry? There are other alternatives to feeding which don't rely on people eating normally . Ask the GP/ district nurse about other alternatives . There is a method of feeding which is used in many people with dementia which is called PEG ( Percutaneous endoscopic gastrostomy ) feeding . It carries risks and perhaps your dad is not a suitable candidate to have it inserted but it's certainly worth asking about . Best wishes to you and your dad . Lou
  15. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    Yesterday new carer got Dad breakfast at about 9.30 and I went out to lunch so as Dad has refused meals to be delivered and given them all to dog, I cooked for him when I got back from having lunch out and by the time he got it , it was about 3.00PM. Then he wouldn't have any tea because he had only just eaten.
    Today he told the carer off who arrived at 9.10 for arriving way to early at 7.30. He had misread his watch. She got him breakfast and he had finished by 10.00 when I went out. I've just offered lunch and got an earful that he has only just finished breakfast at 11.00 and won't want anything until dinner time (6.00 PM) I got told to go away and leave him alone! I'm not sure if it is one big sulk because of late dinner yesterday or if he really doesn't want to eat or just in a terrible muddle over times at the moment.
    At what point would it be sensible to raise concerns with D/N or GP?
    Bit of back ground- Dad always used to be about 13 stone, last year weight down to 9.5 stone and I think last weigh in was around 8.5 stone. His waist has gone down from 44" trousers to about 36" now.
  16. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    Hi Hug thanks for the reply. My dad is 84 and in the last year has been hospitalised with pneumonia maybe 8 or 9 times this year alone he has been in 5 times. In September it was both pneumonia and a UTI. Every time he gets an infection he never quite goes back to how he was before. I think the double infection in September hit him really hard and he has gone from being pretty mobile and going to luncheon clubs every day to sleeping alot more, not leaving the house, doubly incontinent and very weak on his legs. The DN's are keeping an eye on his heel and dressing it twice a week. They have also given me special pressure pads for his feet and a hospital profiling bed is being delivered tomorrow.

    When it comes to food we have literally tried everything. Little and often but dad just says he isn't hungry or that it doesn't taste nice. Shepherds pies, mashed potato, soup, sandwiches, custards, yoghurts, trifles, fruit you name it we've tried it and we get the same response to everything. Dad is getting thinner......I on the other hand am getting fatter from finishing everything he won't eat !!

    I won't give up on him and continue to try little and often but I guess i have to be realistic.

  17. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    Some medications can cause problems with taste, making food taste unpleasant.
    Is he on any antibiotics?
  18. HUG

    HUG Registered User

    Nov 28, 2015
    Can you get him to drink? I mentioned Capri sun they have 53 calories in them. others have mentioned fort sips drinks. The doctor or dieting should prescribe them. district nurse can obtain a sample pack. A lot of dementia is fear so try a straw my mum likes it as a cup was too much of look mouth empty/mouth full fear. If he keeps getting infections it might be caused by inhaling food so always finish with water to clear the mouth. I distract mum with an iPad on so the length of time to take food is not noticed.

    I am glad a hospital bed is being delivered. We have two! But that's another story. Does your dad move in bed. My mum lays on her back and is In the same place the next morning. The pressure pads (we were give blowup boots) have their place however we decided that they were uncomfortable and still place some pressure on the heels. I decided that a thin pad we had at home just under the ankles which lifted the heels off the mattress would be much better as no pressure would be on the sore. Within two weeks the sore was gone. It's just a thought.

    By the way my mum is also 84, she is around 44kg but still stands and walks short distances with help. Don't give up and remember if he is smiling, happy you are doing a good job.

    Sent from my iPad using Talking Point
  19. tre

    tre Registered User

    Sep 23, 2008
    I was lucky - we got referred to a well kept secret here in Herts- the neuro dietician. She succeeded where SALT did not. My husband was 50kg when we went to her. He is now 59 kg, now losing a bit having been 60 kg. She prescribes calogen and tried ensure desserts without success but he seems to like the Forticreme.

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