Dad is losing so much weight

Discussion in 'I care for a person with dementia' started by CCM2013, Apr 23, 2015.

  1. CCM2013

    CCM2013 Registered User

    Feb 7, 2013
    32
    London
    Hello - I just wanted to write a little about my dad, he is in a care home and has been there since January this year. But he has lost so much weight and it is heartbreaking to see him so diminished. He has lost interest largely in food and just eats from time to time. The doctor has prescribed Fortisip and Complan which he takes, but somehow he doesn't seem to be absorbing any of the calories or nutrients. He can barely walk now and he doesn't recognise me anymore. He spends a lot of time asleep. I know that if my dad was aware and conscious of what his life was like now - he would hate it so much. He always told me that if he ever went senile that we should just put him out of his misery and really this haunts me most of the time - the thought that he would so hate being in this position, and I can't do anything about it. He is comfortable and not in distress where he is - but its no life really for him. I love my dad so much - and I don't want him to die but sometimes I think it would be so much kinder if he passed.
     
  2. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    I understand completely what you are saying. My Mum is not so far on the journey as your Dad but on her bad days it is so distressing and I fear for the future, her good days like today give me a boost but I know these will get ever more sparse before she's totally consumed by this horrific disease and then it will be an existence not a life.

    I also have my Dad to look after, he has Vascular Parkinson's. Mentally he's still pretty sharp but physically he is barely mobile. I don't know which is more cruel: my Mum crying because she's regained enough awareness to realise she couldn't remember me a few minutes ago or my Dad struggling to get out of a chair and saying 'I hate myself'.

    It's just beyond awful and will only get worse for both of them. Why wouldn't you pray for release from that for the people you love most in the world?
     
  3. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    My heart goes out to you both. My father was the same. God bless him. He is now safe with my mum together forever.
     
  4. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    I do feel for you. The situation you describe is just how my mum was last year. She too had always said that she would want someone to 'hit her over the head with a rolling pin' if she got dementia....and she had seen other friends suffer over the years. It seemed as if she just gave up interest in everything, if she couldn't get better and have her old life back, she didn't want anything else.

    Her care home was lovely and both us and the staff tried as hard as we could, but she had I think made up her mind. It was still a shock when we lost her, but by then she was completely bed bound and had no quality of life, she didn't respond to any visits, not even her little great grandson could get a reaction and he had been her favourite. So despite the shock and sadness I also felt a sense of relief that her suffering was over.

    I don't know if you have talked to GP and care home staff about an end of life plan, but perhaps it is time to do that before a crisis comes.
     
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    Bless you, Ladybird. My father had the inscription 'I will never desert you nor forsake you' put on my mother's gravestone. With the onset of this illness, he has been declaring his love for old friend and trying to marry her, or even marry the nurses. When I talk to him about my mother, he says abruptly, 'She's gone.' As if she went on purpose. This illness finds new ways to torment those who love the sufferer. I hope and trust that as it takes hold it insulates the sufferer himself - or herself.
     
  6. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    RedLou

    My dad had a friend in the Ch, and she was lovely. They held hands and "talked" to each other in their own way. She passed away before my dad and he used to go looking for her around the ch, it really upset him.
    It was so awful to see him looking so lost.

    Now he is with Mum together at last.
     
  7. SisterAct

    SisterAct Registered User

    So sorry to hear about your Dad.
    We were in the same position two years ago and you just feel useless as there if is nothing you can do. The only thing we did was to keep him as comfortable as possible, talked to him as normal and played all his favourite music. We gave him the best attention we could in the circumstances. It helped us and I'm sure he appreciated it in his own way.
    There isn't much more you can do.....just cherish the time you have with him.
    Luv
    Polly xx
     
  8. Perdita

    Perdita Registered User

    Jun 22, 2009
    219
    Suffolk, Uk
    My mum has no recollection of my dad whatsoever, yet he was her life for over 50 years, as you say, this illness torments those who love the sufferer.
     
  9. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    I think there are a lot of people on here who understand exactly what you are going through and how you feel, myself included. Mom is more or less in the same position of your Dad and it bloody hurts. We just have to be there for them and look after ourselves. I have just posted what my week has been like and its not been good. Like your Dad if they understood what they were like now, I know what my mom would want to do about it. Take care and you are not alone. xx
     
  10. chelsea girl

    chelsea girl Registered User

    Jan 25, 2015
    139
    My mum doesnt ever speak of my dad, i suppose is because he died over 30 years ago! She has also lost weight and dosent eat much at all. I put snacks and drinks by her chair so she can graze. Feel for u, much love x
     
  11. skyblue33

    skyblue33 Registered User

    Apr 24, 2015
    1
    So sorry to read your post. I can hear your frustration and I hope that reading people's ideas and experiences here will spur you on and give you and your dad a more positive future.

    Weight loss is something I hear a lot about. it is not inevitable for PWD. Some people appear to lose interest in food because they need more support in keeping up the skill of eating. If people don't eat what they are given carers sometimes think that they don't fancy it any more. It may be that your dad needs some practical help with actually eating the food. It can help if you eat with him, he can see you eating and follow your cues, and hopefully this will make him more enthusiastic to join in. After all eating is social. Also, giving supplements might be supressing his appetite. Make sure that the food is easy to chew and swallow - are there any problems there? Does he have teeth trouble/pain? Also helps to make the food super tasty to stimulate his appetite. Having little and often is better than trying to get him to eat what we would call a meal. Is there a better time of the day to encourage eating? Also, is he drinking well? If he drinks well, you could encourage his drinking with more nutritious drinks of full fat milk. Just a thought.

    Also weight loss can be because of muscle loss. You say that dad is a lot less active, so his muscles aren't being used as much, so they'll become less bulky and make him look thinner. With less energy being eaten he will become less energetic generally. Weight loss is of less concern than a lack of energy. Could you try to keep him active in short manageable bursts? May be have a walk along a hallway, at his pace, sit down on a bench, listen to some of his favourite music/look at a book/chat (whatever he likes), have a snack together (hopefully!) and then carry on a little further. Ask the care staff for their input on ideas, they know him and could offer something new.

    I really do wish you both well.
     
  12. CCM2013

    CCM2013 Registered User

    Feb 7, 2013
    32
    London
    Thank you all for your kind words - it means so much to know others are going through or have been through similar. The suggestions are really useful and I am going to talk to my mum and try some of them out. Meantime as suggested I will just cherish the time I have with him. Thank you.


    Sent from my iPhone using Talking Point
     
  13. rileya2

    rileya2 Registered User

    Mar 21, 2013
    1
    My Wife's the same

    My wife is the same. She's in a care home and she's more or less lost the ability to walk, has got thinner. She has no short term or long term memory. She recognises me because I try to see her every day( I'm retired). I'm not sure she knows who I am though and she doesn't know our children! I've started, when I am able to, to go in to the home at lunch times and I am feeding her myself. This, when I can do it, seems to work well. Otherwise I find some of the clients in the home, if they don't show much interest in their food, have it taken away quite smartly so the staff can clear up.
     
  14. candiedsonia

    candiedsonia Registered User

    Jul 13, 2012
    14
    Watford
    So hard to watch

    Hi
    My mum is the same. Luckily she is at home with her dog, but the weight loss is amazing as she does not sit still.

    We have found that if my brother takes her to the cafe in the morning/lunch time and I take her in the evening after work we can maintain the weight.

    She will eat with us in the cafe and sometimes loads, but at home she won't eat even though her foods are in the fridge.

    It's like she sees the stuff but it is meaningless to her, but eating together outside the home is different.

    My brother goes away for 3mths soon, and I don't know how to replace someone eating with her outside the home during the day.

    Another hurdle I have to work out.

    Like with your Dad it's finding another way round things.

    Good Luck.
     
  15. PHILLGD

    PHILLGD Registered User

    Sep 26, 2011
    4
    loss of weight

    Hi My wife has dementia when she was in hospital she lost quite a bit of weight so when she came back home I started to give her pork pies/ mini mars bars /chocolate also her favourite sweets i found if you let them snack when they want they will gain weight unless there is a medical reason so try talking to the home and arrange for the things he likes to be in his room and see if this helps [ps my wife is back to 13 stone ] its hard but you have everybodys love

    phillgd
     
  16. Booshka

    Booshka Registered User

    Sep 22, 2014
    3
    Dorset/Lincolnshire
    Mum lost nearly 6 stone while in care home

    Hi,
    Ccm2013.... My heart goes out to you.
    Back in January 2014 my Mum unfortunately could no longer cope at home with support and she was placed in a care home of her choosing. We watched helplessly as Mums condition deteriorated rapidly (poor communication, aggressive outbursts, increased agotation and confusion,faecal incontinence and rapid weight loss....)
    I raised my concerns with the staff there and was told that mum generally didn't want her meals, would spend long periods on her own and was aggressive towards staff. To cut a very long story short, I eventually managed to get her assessed by the Mental health team and social services and moved into an assessment unit. When they weighed her, we were horrified to find that she had lost around 6 stone while in the care home (her stay there lasted around 8 months)
    From day one at the assessment unit Mums condition seemed to improve drastically. Her communication was improved, she was no longer agitated or aggressive and her incontinence also improved. She has since been moved into a different care home (with nursing element of care) and although her condition isn't improving she gained some weight which has remained stable.
    Unfortunately, following an investigation, it appeared that Mum had basically not been eating because she struggled so much with knife and fork and wasn't assisted with her basic daily living activities.... Just a general lack of basic care I'm afraid :(
    I'm not suggesting that this is the same situation for your Dad but hope that assistance with his meals etc is given more priority... And that notice is taken of food he enjoys by the staff there.
    I hope you get something sorted for him... It's so difficult to know what to do when communication is difficult.
    You're in my thoughts x
     
  17. badgergrey

    badgergrey Registered User

    Apr 9, 2015
    2
    West midlands uk
    My husband has been bed bound for nearly two years and had lost a lot of weight, even though he eats fairly well. He has vascular dementia, which at times causes him to refuse to eat for days. One district nurse told me to add double cream to his meals, where possible, as this adds extra calories. I have been doing this for the last month, and he has gained a little weight. My main concern is that he does not develop bed sores. Every day is different, with dementia, you never know what to expect and it's a case of clinging on to your sanity. I cook most days, process the food, though sometimes it looks like slurry, it tastes ok. :)
    Good luck, I feel for you.
     
  18. Preeder

    Preeder Registered User

    Mar 31, 2014
    2
    This is such a strange disease and effects people so differently. My mum eats such a lot of food ( more than me), and constantly worries there isn't enough food in the house and yet has lost a stone since Christmas!! It has become an obsession at the moment in her life and even when the fridge is full, she doesn't recognise the food in it. She is constantly hungry but seems unable to deal with that feeling of hunger so has to eat regularly but doesn't put weight back.


    Sent from my iPad using Talking Point
     
  19. shelagh

    shelagh Registered User

    Sep 28, 2009
    476
    Staffordshire
    experience of weight loss.

    My mum who did a month ago aged 94 was only 4st 7lbs when she died. No matter what we did feeding her eating with her, taking her favourite foods, food supplements, after a few mouthfuls she would push it away and any retries got a very angry NO. It seems to be what happens in late stage dementia. For myself I am in the process of organising an Advance Directive and it will include no dietary supplements.
    Shelagh
     
  20. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    This is such a worry for everyone, my mum has also been in a CH since January , had a lot of infections and lost weight. Her memory is now almost non-existent and she refers back to her teenage years all the time, asking me how her "our" mum and dad are (I think I fluctuate between being her sister or her daughter, depending on the conversation and who I am with at the time). My father (long deceased) is now never mentioned and we've learned the hard way which subjects are anxiety provoking ,which are the safe ones. We've stopped trying to have a "meaningful" conversation with her, and she's happy to just have me or her grandchildren sit with her for an hour or so,or we take her out for a drive and a meal and try to keep everything happy, smiley and up beat. At times I still miss being able to have a moan to her about my job , my man or my children (as you do) and hearing her stick up for me while at the same time telling me I told you so, etc. (rose tinted hindsight will get you every time - so much loss to deal with - I still can't face packing up her home and belongings - I pick up a photo frame or look through her cupboards and it sets me off again - honestly, I could carry home spuds in the bags under my eyes.

    But the weight loss is a worry - I think if she doesn;t like the food at meal times they don't always offer her anything else and she wouldn't think to ask because, to her, nothing else is available, if it's not within her range of vision or hearing then it doesn't exist. The staff don't always seem to understand that PWD often need a visual or verbal prompt, something we as a family learned the hard way. Staff will make her something if I ask, but I can't be there every mealtime and all I see is my mother getting thinner and more frail each week. But on the other hand they are very good at giving her the reassurance she needs, and they take good care of her through the night when she agitated or anxious and wants to wander around. I am slowly learning to accept what will be will be and that I cannot control everything that happens to her.
     

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