Mum refusing to accept LBD diagnosis.

Discussion in 'ARCHIVE FORUM: Support discussions' started by honeyc, Feb 22, 2008.

  1. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    As it has been half term for my children this week, we were able to go and stay with my Mum for a few days. The aim of our visit, aside from giving her some company, was to continue trying to clean up and tidy her house.

    Despite all of our best efforts, my Mum refuses to accept her diagnosis. She gets extremely aggresive and starts blaming everyone else for all of her current problems. She is not looking after herself very well and I am very concerned about her poor diet.

    My Mum stopped eating all red meat quite a long time ago but since she has been living alone she doesn't seem to bother cooking at all. Several years ago she was told that her cholesterol levels were a little high and was advised to restrict her intake of things like eggs and cheese.

    After having stayed with her for a few days I am deeply concerned that she is eating very little and what she does eat is not nutrionally good for her.

    Does anyone out there have any information of low/no fat diets having a detremental effect on a person mental capacity? How do I get her to cook and eat more healthily when I cannot be there each day to cook her meals and eat with her?

    I place internet orders for her grocery shopping that are delivered to her home but unless I am there to cook and eat a meal with her, next time I am there I find food rotting in the fridge. It took my husband and I the best part of two days to clean her kitchen!!!

    Her continued refusal to even consider the posibility of anything being wrong with her makes it virtually impossible for us to discuss how she would like things to be further down the line. I am unable to get her to sort out anything, she insists that she will deal with all of this when things get worse. My concern is that if she gets much worse, she won't be capable of making these deciscions.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    it may be that she no longer knows how to start to cook. Usually it is not a case of not bothering; more often it is that they either do not feel hunger, or they don't know what to do about it.

    Stopping red meat could have been because that requires more cooking than a heated meal and if knowledge of cooking skills is waning...
    it is not impossible that she doesn't remember what the fridge is for when alone, or she thinks it belongs to someone else.

    to be realistic, you probably cannot.

    Your Mum needs help that you probably can't give - first stop is the consultant probably, and the other agencies. It may be they can suggest or prescribe something that may help for a time.
     
  3. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Honey

    Sorry to hear about your mother. I am in a simular situation with my father, who is showing signs of AD but is in total denial. He lives on his own and has done since my mother died 19 years ago.

    Recently, I have been very concerned that he was not cooking/eating properly. Eventhough, according to him "there was nothing wrong and he was eating properly:eek:", I contacted his GP. She agreed that "meals on wheels" could help.

    After a few phone calls, I arranged for the homevisit by Social Services to be made. I did have to "groom" dad. I said that basically if he wanted to try the "meals on wheels" he would need to say that he was not really cooking for himself. Dad enjoyed playing along with the "game" albeit, I am sure that what he was telling SS was nearer to the truth than he was telling me. jJust to make him feel as though he was still in control I explained to him that these meals where only "on trial" and if he did not want them then he could say no and they would stop.:)

    Anyway, the day after the home visit the meals started. Dad is really enjoying them and is eating so much better now.

    The only real problem I am now having is trying to get dad to remember that he is having a hot meal delivered.

    Whatever you decide to do for you mum, good luck! Please keep posting and let us know how things are.

    Take care

    Burfordthecat
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Honey,

    I am so sorry you are in this difficult position with your Mum. Frankly, I think you will find very few people with any kind of dementia diagnosis who can or will accept it. We have a few shining stars (like our TP member Ken) who understand what is happening and accept the reality, but for most it is flat out denial!!

    This means you need to become very subtle and quite manipulative. :eek: I found this one of the hardest things to do. As I've said previously, most of us are brought up to "tell the truth" and my Mum especially could always see through any fibs I told! It seems so dishonest, disrespectful and mean to tell outright fibs or "fiddle" with the facts, when dealing with our loved ones.

    But their "truth" is no longer the same as our's. Now they need to be cajoled, encouraged, etc. to do what is best for them. If the real reasons (as we know them) are not those they can or will accept, we then have to "make up" other reasons, explanations, etc. that ARE acceptable to them.

    You might find suggesting "Meals on Wheels" works for your Mum if you say it is a new service in the area and they are offering it to people of her age. (Whoppers one and two!! :eek: ) Then you could add that, if she doesn't like them, she only has to take them for a period (say, one month) and then she can cancel them. This might result in her taking MOW as a favour to them ( :) ) rather than because she can no longer manage to cook or prepare food for herself.

    I have found my Mum is very good still at covering up her inadequacies and so it is often difficult to know what she can still do, or cannot still do.


    Your Mum needs help that you probably can't give - first stop is the consultant probably, and the other agencies. It may be they can suggest or prescribe something that may help for a time. I also agree with this statement from Bruce. Sad as it is for you, it IS very important that your mother receives the care she really needs. If she can no longer cope on her own effectively, and refuses help, it may take a more drastic step to achieve this.

    I do hope for your sakes that she can be persuaded to accept some help. Someone else on TP finds it helpful to say to her family member that the help is free and the government are paying for it! For those who lived in more circumspect times, "free help from the govt." may be irresistible!

    Every best wish in coping with this difficult problem.
     
  5. AJay

    AJay Registered User

    Aug 21, 2007
    123
    Leics
    Hi Honey

    This is so similar to the situation with my Dad who aggressively refused to accept any kind of social care for a long time (the nothing wrong with me syndrome). Although I'd be doing his shopping and trying to make him some sort of meal when I visited him after work at night, he ate less and less and depended on snack food to get him through the day (when he remembered to eat), though adamant that he could still cope for himself.

    This like you resulted in lots of food just rotting in the fridge and when I emptied it all out he would be cross because it was wasted. Occasionally I would find that he'd raided the dustbin and put it all back! Moral - take it to your own bin.

    I discovered that he'd forgotten how to use the cooker and was struggling with the microwave. We decided to forget the cooker, it's too dangerous for him to be fiddling with it, and have invested in a very simple to operate microwave which he manages but only uses it to re-heat his cup of tea!

    After many discussions we managed to persuade him to have a 'dinner lady' who came in every lunchtime to make him his dinner (paid for of course by the government, and we told him she's noting to do with social services!) which started a few weeks ago. We bought a small freezer and ordered food from Wiltshire Farm Foods, they supply frozen complete balanced meals (the delivery man even puts them into the freezer for Dad) which are just put straight into the microwave and cooked from frozen. Dad - who was a very good chef - loves the food. Dad's dinner lady also checks that he's taken his medication as he always forgets but doesn't intrude too much on him.

    Sad as it is for you, it IS very important that your mother receives the care she really needs. If she can no longer cope on her own effectively, and refuses help, it may take a more drastic step to achieve this.

    This is very true. Sadly I think we did too little too late because Dad ended up in hospital recently and is now temporarily in a care home being assessed as to whether he can cope on his own any more. I'd love to see him back at home but I don't think he'll be going back there. I suspect some of the blame for this can be put onto me because I allowed this decline to happen by not being a lot stronger with him and getting the professionals involved a lot sooner.

    AJay xx
     
  6. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Sadly, it is so common for people with dementia to be in denial. This is for two reasons. The first is lack of insight. People with dementia honestly do not recognise that there is anything wrong with them, or recognise their failings. They may simply forget the things they do, or believe they are doing what they always did. You get the "well OF COURSE my slippers go in the fridge, that's the place they go, that's where I always put them" - this is as obvious and right to someone with dementia as putting slippers away in the shoe cupboard is to anyone else. The failing faculties creep up slowly, so people develop coping strategies to compensate, or just don't realise there is something wrong. It;s like failing eyesight: if you didn't have your eyes tested, you would recognise how bad your sight was because you become accustomed to it. Only when you put glasses on do you get the "wow! I never knew it was so bad" factor. sadly, that is not going to happen with dementia...it;s also why strangers who see patients infrequently may comment "how much so and so has declined", but we don;t notice this so much.

    The second element is sheer denial. It is easier to deny than to face the ugly truth - and with dementia, that truth is very ugly indeed. It's not like other diseases where you can point to something undeniable like a lump or bleeding.

    It;s unlikely you will be able to convince Mum that there is anything wrong with her, or that her behaviors (no matter how bizarre) are anything other than "normal". You'll have to be prepared to cajole, cheat, and yes, lie!
     
  7. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    #7 burfordthecat, Feb 23, 2008
    Last edited: Feb 23, 2008
    Hi Ajay

    I can really understand you wanting to blame yourself for the situation but you really should not. Trying to deal with someone in denial is very hard going. I have the same situation with my own dad. We have to balance risk assessment against their own wishes of wanting to remain independant, Unfortunately there is no right or wrong way to deal with AD. There is not a well written manual on what to di in a specific situation as every person is different. At the time you made your choices you did it with your dad's best interest in mind and you should not beat yourself up over what, with hindsight ,you maybe should have done.


    Honey

    Just following on from the post from Ajay, the frozem meal option was mentioned. I though that I would mention that the company who provide the "meals on wheels" service is the same company who provide the frozen meal service. By all accounts the food is good:)

    I do hope that you manage to convince your mum to "try". I was really worried that my dad would not agree, was quite an uphill battle to get him to agree but has been worth it. Even he now says the wishes that he had taken these meals sooner.

    Burfordthecat
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Honey, I know what a concern it is when you are trying to care for someone living on their own who protests independence and capability .......

    Just to pick up on concerns about healthy diet - I would say forget it!!!!!! (Medical advice needed of course).... Just from a personal illustration ...... I feel if they are eating ANYTHING - be happy ..... My mum's cholesterol levels gave cause for medication (which she now refuses to take) and her GP has told me not to worry .... nor to even consider trying to adapt her diet ...... quite frankly, if she was capable of making cheese on toast with a fried egg on top it would be a miracle!!!!! If she could follow that up with a huge slab of cake and custard and a round of cheese and biscuits.... all the better for packing in the calories and trying to maintain what little bit of weight she still has ..... no, they are not 'good diets' for people trying to maintain 'healthy hearts' etc ..... all I am trying to say is I am learning to try to put mum's 'diet' into context .....

    I provide lots of home cooked meals (mostly vegetarian because I figure vegetables provide less risk when unfridged (rancid even) than meat dishes:eek:)if I haven't checked up on a daily basis ...... but lots of cakes and pastries too .....

    The possibilty of having groceries delivered to mum has been mooted to me before ..... I confess I poo-pooed that straight away knowing for mum she would find it startling and confusing to be presented with a selection of ingredients she would have no earthly clue how to manage and co-ordinate - let alone cook ..... in fact, would probably distress her because she would not know where to store thngs - let alone - how to cook them anymore ...... if she had remembered where she put them in the first place ....

    The 'frozen food' services may well be a good option ...... if your mum can still understand that 'frozen food' should remain frozen until needed (not regularly taken out of the freezer for an 'airing'! :eek:......and re-frozen :eek: ....as we discovered my mum did before we removed her freezer) and she can follow instructions on how to heat them properly ........

    My every sympathy ....... not just for the day-to-day 'how to cope and look after them' - but the LBD element sure provides a test ....... the variations in lucidity and behaviour, acceptance and denial I find astounding ........

    Love, Karen, x
     
  9. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    I would second the "forget the diet"! People with dementia are not open to reason or logic, and it's pointless trying to argue with them because you can't win. This means you may well have to lie, cheat etc but also be prepared to give up!

    It;s very difficult to watch someone doing something you know isn;t good for them, such as ignoring medical advice, but there is no point in stressing them and yourself out in a battle you can't win.

    The usual advice is - "calories". Just try to make sure that Mum isn't actually starving and quit flogging yourself over her "bad" diet.

    My dad refuses to eat anything but jam sandwiches, cake and sweets, and refuses to take the iron tablets which were to treat his (unsurprising) anaemia. But we can;t force him to eat "healthily" or to take pills against his will. I stopped worrying myself over it long ago.

    We reported the iron tablet difficulty to the GP who just shrugged and said "well, there's nothing anyone can do about it, eventually he'll just find himself taken into hospital"

    Even the medics, dieticians, etc, don;t try to press the issue of a "healthy" diet.

    To be brutally honest, someone with dementia has much more pressing and immediate problems than their diet...
     
  10. AJay

    AJay Registered User

    Aug 21, 2007
    123
    Leics
    First of all thank you Burfordthecat for your words, I need to be put into perspective sometimes and blaming myself isn't doing anyone any good.

    I totally agree with Nebiroth and Karen, forget the diet. One of Dad's 'dinner ladies' commented that there were an awful lot of cakes and sweets in his house. I did say that at this time and stage of his life if that's what he wants then that's what he'll get, it was pretty much all he seemed to eat at one point, I was binning everything else. I also suspect that he's largely lost his sense of taste but can taste sweet things more than anything else.

    I did catch him once though having tongue, French cheese, strawberry jam and copious amounts of salt on hot cross buns. Bless.

    AJay xx
     
  11. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    I'm so grateful for this thread. I was going to post a new thread myself on just this topic. My mum as always been very slight with a small appetite (normal weight 7 st. 7 lbs) and over the last year has dropped to under 7 st. I have been very concerned and trying to get her to eat better as she really can't afford to lose any more.

    She eats a bit better when she is out with friends or if I eat with her but I'm sure she skips meals or can't be bothered when she's on her own. But I can't be there all the time and I know she's missing meals. She has Fortisip (Fortijuice) from the doctor on prescription, which may be useful for your relative too. They are a calorie drink/diet supplement. My mum has one in the morning (elevenses) and one in the afternoon. They are not a substitute but may be helpful as a supplement. They come in juice flavours and also as soups, in little cartons. Easy to take and packed full of calories. (I wish they had one that worked the opposite way - in half the time my mum has lost 7 lbs I have gained the same amount!)

    So much of what has been written has struck a chord with me and it is reassuring to know we're not alone, and it's very helpful to have the advice and suggestions from everyone.

    I have just set up an appointment with Social Services for this coming week and am hoping that they will have some ideas.

    I like the idea of the Wiltshire frozen foods (which my father used to have) and someone coming in from SS to prepare them. Not sure how Mum will view this but.... one step at a time.

    I am lucky in that she is (usually!) aware that there is a problem with her weight/shopping/cooking/eating so this makes it easier for me. She is still very happy to discuss any problems and if I give her time she sometimes comes up with a solution or suggestion herself which is great.

    The "usually" in brackets above is because she sometimes says "I eat very well you know, you never need worry. I have a good appetite." Yeah, right!
     
  12. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    #12 hendy, Feb 24, 2008
    Last edited: Feb 24, 2008
    honeyc
    I'm sorry to read about your mum's difficulties. It reminded me of when I was trying to keep Dad independent in his bungalow. He kept eating loads of cheddar and fruit cake. Unfortunately, you have to adjust and come to terms with the limitations that are part of the disease. Any semblance of independent living has to be supported and concessions made, as long as your loved one is safe, that has to be the primary concern. I can't add to anything that has already been posted -just to say that it's all really good practical(and ingenious!) advice. I wish I had had this kind of support for my dad at the time when I needed it...
    Take care
    kind regards
    hendy
     
  13. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Amanda, Glad that you have found this thread helpful. Believe me, TP is invaluable for support and information, real people in real situations with sound advice and friendship.

    I am glad that you have got a meeting with Social Services this coming week and I hope that you have a good result. When I arranged for my dad to have a Social Services home visit (in a view to getting "meals on wheels") I made sure of the following:

    1. I spoke to Social Services on the phone, prior to the meeting to make them aware that dad was having "memory issues" and was likely to "walk the walk and talk the talk- being in total denial that there is anything wrong".

    2. I also explained to dad that if he said during the visit that he was coping OK with cooking then they would not offer him "meals on wheels".

    3. As my dad is so very independant I explained that even if he agreed to taking "meals on wheels" he did not have to keep having them. It was his choice. I decided that a little white lie could be forgiven, given the circumstances;)

    Amanda, My dad was also offered the option of frozen meals or hot delivered meals. I felt that the hot option was better for my dad, as he lives on his own and to try to teach him to use a microwave would be tricky:eek:. The hot option does have an additional benefit, if the delivery driver does not "see" dad he is unable to leave the meal and I will be contacted by phone. If I am unable to speak to dad within a two hour window, Social Services are obliged to visit the property and check that everything is OK. This is good, as dad would currently not be willing to accept a "career" checking on him daily.

    Anyway, good luck this week and let us know how things go.

    Burfordthecat
     
  14. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    With Thanks

    A very big Thank You to all who have replied to my original post. It is incredibly helpful to be able to air your thoughts and fears and realise that you are not the only one having to face these kind of problems.

    I find it incredibly difficult to accept that I must inevitably "give up" on my Mum and content myself with just ensuring that she is safe. It is very difficult to do this with someone that you love and care about.

    The advice about not worrying about her diet is very helpful. I can see the point of not worrying pointlessly about "what" she is eating as long as she is eating something!!

    The next major hurdle will be trying to persuade her to go to her three month review with her GP and the Consultant. She is convinced that they are out to "get" her.
     
  15. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    #15 Nebiroth, Feb 25, 2008
    Last edited: Feb 25, 2008
    Dear honeyc, you should not see this as "giving up" on your mum.

    What you are really doing is gaining acceptance that there are some things which you cannot change, and that you will still giving your mum the best help that you are able to - and that she will accept.

    "giving up" to me means "not helping where you can". You are not giving up on your mum.

    I am not a religious person, but there is the old prayer of serenity:

    God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other.

    As to the three-month assessment, it may be worth asking if the GP and consultant can visit mum and home ... and possibly arranging said visit without telling mum, so that they "just call in to see how mum is".

    My dad has had all of his consultant visits at home - indeed, I rather suspect that this is the default mode, consultants who specialise in this area will be well aware of the difficulties that arise and structure their day accordingly. Our GP has also expressed a willingness to visit dad at home after we explained the enormous fuss and difficulty of getting him out of the house. Like your mum he is convinced that "they" are trying to shift him to hospital or a home.
     
  16. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    honey
    No one is suggesting that you 'give up' on your mum. I have never given up on my dad, even if other members of the family have. It is just that I found I had to be realisic about what could be achieved. I have realised that maintaining safety and quality of life for Dad has become even more a priority as the disease has progressed. I know its different for everybody.
    Hendy
     
  17. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    Not giving up, just coming to terms

    I think that what I was really trying to say was that I am having to come to terms with my Mum's diagnosis and am finding this hard. It certainly is not a case of actually giving up on her, but more one of accepting that I cannot shake her out of it or get her to see the oddity of some of the things that she says and does.

    It is very hard to accept that someone you have always looked to for advice and support now needs that from you. The role reversal takes a bit of getting used to.

    I am still trying to read up as much as I can and that is where this site is invaluable. The insight that is afforded by the viewpoint and opinion of others with similar experiences is helping me a great deal. I am starting now to see that I need to accept the reality of my Mum's situation and try to offer her the support, comfort and consolation that she needs, when she needs it.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,561
    Kent
    Dear Honey,
    You have reached such an important place, the place of acceptance.
    However much it hurts, and however painful it is, the condition cannot be changed. Once we realize it, we stop fighting.
    Take care xx
     
  19. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    #19 hendy, Feb 25, 2008
    Last edited: Feb 25, 2008
    I think when we become carers for mum or dad, there is definately role reversal. Talking to Dad today - he'd just finished lunch on the ward. He'd got in a sticky mess with his lemon mousse. Cleaning his hands I said 'I remember you doing this for me, Daddy' He said 'yes' and chuckled. A little golden moment. I think you love them even more...
    Practicaly speaking, when Dad first became poorly, I had a great deal of support from staff on the ward. There was an awful lot to come to terms with!! The cirmcumstances were unbelievably traumatic, not least of all for my dad and very complicated he had a multiple diagnosis incl. vascular dementia. As brilliant as this site is (and it is!!) as main carer for your mum, do you have access to some kind of couselling from staff on the ward or some other health professional involved in your mum's care?
    Hendy
     
  20. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    My Mum is still living in her own home with no input as yet from any outside services. All that is happening at present is that she will be asked to attend a review with her GP and the consultant pychiatrist in about another two months. Mum has asked me to go with her to any appointments that she has and I will try my best to do so.
     

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