Advice

How to offer help to someone with dementia who doesn’t want it

Hello,

My father has suffered from dementia for at least 2 years now. I have noticed behaviour steadily deteriorating over the past months and am worried that my mother who is his primary carer is struggling to mentally and physically care for him now.
His short term memory is almost non-existent now and claims he can not do anything on his own. When my mother leaves the house he gets stuck in a loop of distress constantly questioning where she has gone and why she has left him even if she's only gone for half an hour.
I need to know what the best course of action is as I honestly feel my mum cannot continue caring for him for much longer.

My husband has completed a four-hour psychiatric evaluation to determine if he has Dementia or some other problem. We do not know the results yet. I have halted the process after observing my husband's reactions so far - he was extremely angry about the questions he was being asked. He is in denial about dementia, but not so much because it is dementia - he would react badly to any diagnosis of a major illness. Physically, he has enjoyed almost perfect health; that, coupled with a family belief about illness, has me very worried. Initially, I thought the family had a religious belief which governed their attitudes about illness, but that's proven to be incorrect. As best as I can determine, illness is regarded as a negative - a terrible flaw which renders the ill person unacceptable to society. In other words, someone who is pitied and no longer admired. Less serious medical problems are to be "toughened out" and the family generally had little sympathy for sick people. When faced with a serious illness, my mother-in-law could not and would not work with her doctors, fellow instructions, or help herself in any way. If she could not be miraculously cured, she preferred to die. I've no idea how my husband will react, but I think it will not be good. Alcohol will be one solution. I also worry about anger. Should I set up some sort of medical care with a neurologist or neurosurgeon? I worry that the psychologist giving my husband a pass/fail readout will leave me with some bad problems. I've no one to assist so I'm trying to avoid problems I can't handle. I would appreciate any suggestions.

My 87 year old mum broke her hip and wrist following a fall in July 19. Spent 3 months in hospital and had 4 general anaesthetics. She deleted post op delirium. After 10 days of being home she was admitted to hospital with divictulitis. Back home after 4 days then back in hospital 2 weeks later with Pancreatisis and bowel perforation which was treated with anti biopics. Came home 2 weeks later. Prior to her fall she lived alone no walking frame etc and able to do everything. She now can't even stand without assistance I have to use wheelchair to move her. She has gone downhill rapidly seems to have developed full blown dementia. Doesn't recognise her home, most of her family. I have taken leave to move in with her. She cries all the time is awake all night calling out for her mum. Cannot watch telly as she thinks the people will come out to kill usome etc. She is now incontinent and unable to do anything. Thought this could be vascular dementia as she was able to walk with frame until she had pancreatisis but not 100% sure is it normal for someone to decline so rapidly. Concerned daughter

My mum has had memory issues/confusion for a few years. After a recent stay in hospital she has come out very confused/mixed up - not recognising her home as her own. She seems really miserable and unhappy and wanting to be out of the house all the time. She doesn’t seem to like being with my dad at all who is quite immobile and can be horrible to him. Although he is very awkward and isn’t patient with her or helping the situation. . I’m so worried about what to do - she currently has crisis carers in arranged by social services after her discharge from hospital. Originally they were coming in 4 x a day but now they are coming 1x a day for one hour a day. It’s not enough and will stop after New Year so we are trying to find private carers. I’m totally heartbroken seeing my mum like this, I don’t think I’ll see her happy again or know how to make her happy. I think her relationship with my dad is not good as he can’t cope with her and is used to being looked after by her and now she can’t do this. I have a young family and job and can’t be there as much as she needs - I feel so helpless .

We've noticed mum (76) increasingly struggle with remembering words and now struggling with some tasks. She is petrified of getting a dementia diagnosis. She finally agreed to see a GP who referred her and a dementia nurse (I think?) was sent to see her at home. At the end of the consultation she offered to get mum seen by a consultant but she refused as she has she'd rather not know, so has been discharged from the service currently. I really think she needs a diagnosis, just to plan for the future whilst she is able to contribute. Dad doesn't want to upset her so won't push the issue. Should we wait until she gets worse or push her to go and upset her?

This whole article seems to make the assumption that the person diagnosed with dementia has the mental capacity to understand what is happening. "Giving the person time and space to think about their diagnosis" The diagnosis was forgotten two minutes after it was given!
You might consider "speaking to the person’s doctor yourself" no professional I have spoken to will do anything without getting my mum's permission to speak to me first, she won't give it as she says and believes there is nothing wrong. I have had 4 years of caring now, with no help. Mum is now living with me, I live with aggression and stress everyday, Memory Clinic discharged her the same day as diagnosis as my mum said there was nothing wrong! Doctor says speak to social services, social services say there is nothing they can do if mum won't accept help. I am afraid often the reality bears no relation to the above article. Getting help is like banging your head against a brick wall, until finally you become numb to the pain because you can see no end to it!!!!!!!

My dad is 92 and has just had a replacement hip because if he had not he would have ended up in a wheelchair with change in all aspects of life. He has dementia and still lives supported but in his own flat. He cannot recall he has had the operation and therefore will not follow instructions about how to sit, lie etc. He has become overly aggressive and just plain bloody awkward and he is making everyones life a misery in spite of all the help we are providing. I dont want to sound mean or ungrateful but is there anything we can do to reinforce that he has had an operation and that he needs to take care in certain ways. We love him dearly but as with all things dementia life is not easy.

Hi , my mother (87) lives at home with my father (91) my mother has dementia although she has not been told . My father is good for his age, but has become very impatient. I’m the youngest of three of their children, I have two older brothers. We have a carer who goes in once a day to check she is taking her meds. But she has to take quite a lot of tablets 4 times a day. We have got her dosit boxes, but it’s still a struggle for her to take them properly,as the carer only goes in & checks once a day ,we have had a lot of incidents where she has taken the wrong ones . This is only 1 of the things we are finding so hard to deal with. I try to go every day ,but this is hard as I work part time & have a family of my own. I feel at my wits end with worry . I would be so grateful for any help/advice you can give . Thankyou. Joanne Warrender.

Hi my name is Janice , my mother is 87 yrs old & my father who is 89 looks after her , She has dementia but refuses to get assessed , My father has sever health problems , my mum forgets who he is , & at times is very abusive to him, recently I stayed at my parents house with my daughter , My poor mum came into bedroom early asking why we was in her house , we had to leave as she was very abusive , said we was stealing & was dirty scum ..was very upsetting for my dad , , but he agreed it was best we leave , so so worried about my dad , he is so frail , & mum can be very violent , he loves her so much , but he has told me he recently took overdose wanting to die ,

Background - My mum has Alzheimer’s and now in later stages. She has delusional episodes and hallucinations. Memories, usually bad ones, come together from many years ago causing her to be distressed. She forgets decisions she has made and changes them frequently.

Issue - One family member is Manipulating her to gift him £50k. Clearly But she is incapable of understanding the implications of such a major decision. I have an LPA, do I have the authority to stop her gifting this money?

Hi iam deeply concerned about my ex mother in law. She is now 83 and had always been a very strong independent lady. I have recently been hearing things from my eldest daughter that things at home are not good. Her nan constantly forgets things which she has been doing for some time ( those where the early signs ) but what does concern me most is her aggressive behaviour towards her grandchildren. She has been calling the police on my daughter saying she is stealing and making up lies which we all no are not true shouting at people being nasty and being very racist towards her youngest grandchild who is 6 and half Indian calling him awful names. We all no this is no her personality and she needs help but refuses. She takes her tablets and forgets she takes them and has more. She is a very stubborn lady. Need some advice on how to get her help when she se flat right out refusing

For the past 18months my mother’s recall and behaviour has changed dramatically. She has pretty reasonable memory of both recent and older events but struggles to remember family names , places , and words in sentences ..: this began to happen a couple of years ago and she would get very frustrated with herself .., now she just asks my dad without seeming to worry about it . Behaviourally she has Increased aggression to my dad, constant negativity about her sibling , irrational views politically , inappropriate comments about people’s ethnicity , size etc all of which she never showed before. We have tried talking to her and she just gets aggressive and says that we think she’s a nutter ( it’s hard to take as she would never have referred to my nan like that who also suffered from Alzheimer’s’) . After a confidential note to the drs they “gently “ bought up the subject in a check up about another issue ... she went mad afterwards as she knew why they were asking her things etc ... and could recall taking my nan for a similar appt. The drs referred her to the memory clinic... as the appts came through the post she got more annoyed and has refused to go. We’re not sure what to do next , she has previously struggled with very low self esteem and depression and I’m not entirely convinced that she would cope with being told about her condition, having seen my NaN go through it . We are now leaving things for the time being, just trying to get on in as normal a way as possible , not entirely sure what our next step should be ?

"Keep a diary of events – examples of issues, dates, times, locations – and what happened." - don't like this one bit as it could be used to manufacture fake events in order to make it look as though an older person has dementia when they don't, as well as point to trivialities that anyone might forget such as where such and such a person went on holiday recently, which literally anyone could forget if they weren't listening or not interested.

My Mother has been in denial for about 2 years and only recently has it cone very apparent she has it. This is since my step father went into hospital for a knee operation. I have been banging my head against a brick wall for 2 months with the doctor, adult care, social worker and dementia nurse. It appears that because she won't engage they have washed their hands of it. We don't have a brilliant relationship so things are abit throught. I have recorded things, video evidence and spoken to people. I'm at a complete loss. My biggest fear is my step father is vulnerable being quite immobile. My mother gets very confussed with keys especially and calls the police saying her daughter has locked her in. Where can I find someone that will listen? X

For the issues mentioned with days of the week, date and time. I have used for a number of people clocks that display in large letters/numbers the time and day of week ( seek a battery back up type, as the plug WILL be pulled or switched off!) . I have recently purchased some with medication alarms, and despite inital resistance have proved to be most effective.