Those of Us with Elderly Relatives Who Won't Accept Outside Help

[whitecloud]

I'd like to start a support thread for anyone who finds themselves in this situation. My Dad died last year and Mum already suffered from depression. She coped for three months, but lost her appetite and has become thinner and thinner. They were married for nearly 60 years and were very happy. She hates eating alone and has stopped cooking or even heating food up that is provided for her. To cap it all, she has now been diagnosed with diabetes.

The worst thing about all this is her resistance to accepting help. She should have gone to the doctor months ago. She has a swelling on her face, which we think is a dental abscess - it must be painful, but she won't admit it. She is afraid of dentists as well. Us children are trying to cope and get some care into place, but as the old saying goes "you can lead a horse to water, but you can't make him drink". She doesn't want my husband or dd to see her. Dd is just twelve so I've been to see my Mum on my own. But it is getting harder to cope with seeing her so ill. I want my husband to come with me for support - my dd could stay with her friend. I am 70 miles away so there's a limit to what I can do.

My younger brother is the nearest, but it's hard on him. I suppose the very elderly (she's 83) get more self-centred and she is depressed, but they lose sight completely of the strain they are putting on other people. My second brother keeps travelling up from Devon to see her. Neither of my brothers has children so they are freer to be with her, but outside help would so much ease our suffering and the strain.

What has helped me is trying to tell myself amid all the guilt that I have to think of the welfare of my husband and child and my own health. Have read other threads and realise how hard this is to do.

I was also talking to someone and they said I should think about what my Mum was like when younger - she would have been horrified at the effect she is having on the family and it is the illness that is really in charge. That does help too.

Has anyone else had this kind of experience? Maybe we could support each other.

Whitecloud, I dont have any experience of this but I would imagine the best course of action would be to speak to her GP and see if they would do a home visit ?

She needs caring for and it simply is not possible for you to do as much as you want. You are right you have your family and they are your priority to a degree.

Call the GP and ask to speak to him/her, they may even be prepared to send a District Nurse in.

IMO I think it is a case of tough love for you now as she is just gonna waste away to nothing or fall ill because of ? infection and diabetes and improper diet.

Chat to your brothers and see what they think. Maybe one of you could accompany the health care professional or maybe talk to her first and plead with her to be seen.

I dont think for one minute it will be easy and I hope you can get something done with the help of your brothers.

Hi Whitecloud, it's such a difficult situation isn't it. You don't want to patronise her or force her to do something against her will, but you can clearly see that she needs help. Maybe if she realised just how worried you and your brothers are, she might agree to go the GP or dentist?

My mum looks after my step-father (he has some form of dementia, but she refuses to accept that it is dementia and keeps quoting the GP's diagnosis of 'cell degeneration' which was given about five years ago...) Their lives have dwindled to almost nothing now, he's had to give up driving, can't tell the time or turn the TV on by himself etc. so he clearly has a major problem but mum refuses to take him to the doctors as she doesn't want to stress him out with the barrage of tests he'll probably have to go through. She doesn't even really see herself as his carer so won't even contemplate applying for a carer's allowance, even though she never lets him out of her sight and even accompanies him to the loo during the night in case he gets lost.

I think if your mum realised just how worried you all are about the situation, maybe that would jolt her into seeking medical help?

I have two sisters who live very close to my parents, I'm about two and a half hours drive away so I too am pretty limited in what I can do to help them on a practical level and feel so utterly useless. One sister doesn't work so is in the unenviable position of having to become a carer to both of them as mum is also fairly immobile. It's so sad to see how they have deteriorated.

Sorry, I seem to have hijacked your post with my own problems. I do hope you can find a solution to your immediate situation, let us all know how you get on.

yup. my gran. 87 in july. i'm her next of kin. i'm 2 hours drive away.

a fecking nightmare.

thankfully..though i didn't think so at first..she's in hospital with pneumonia. fab sister on the ward has been incredibly helpful and will not let her go home until they have arranged regular home help for her. not so much personal care, more for shopping, hoovering, errands, generally checking she's ok 2/3 times a week.

baby no2 planned for next year, so i know i'll have even less time for her then.

hard isn't it?

she nursed my mother through 7 years of cancer, then my grandad through 15 years of arthritis/sciatica/general immobility. plus brought me and my sister up. not nice to see her like this now.

Thank you all for your posts. The feeling of helplessness is the worst. Mum has finally been persuaded to go to the doctor, but now has to go to hospital to have her mouth examined. So that's one achievement. My brother is there this week and I shall be going at half term because dh has the week off. Not sure for how long because I don't want to leave dd too long. We feel the time is coming when she will have to be looked after full time. The strain and worry on us all is really beginning to tell. Article in Sunday Times today by Indira Knight saying that there is not much help for the elderly. Too true. See what you mean, Ruddynorah - if they are in hospital at least they are being taken care of. However she will be very upset if that has to happen. Just don't know at the moment. Hospital appointment is on Tuesday, so then we may know more.

My mother was dreadful regarding having help. She would be very bloody minded about the whole thing and would insist on doing stuff on her own so as 'Not to be any trouble' and then would normally fall, injuring herself and creating masses more trouble. and I'm 5 hours drive away!

In the end it was obvious that she was in the early stages of dementia and was sectioned. She has been in a psycho geriatric unit for the last 6 years and hasn't recogned me in the last 5.

I have so been there. My mum refused any help and totally relied on me and my brother, this got worse and worse until my brother was even having to go round every evening to draw the curtains, on top of taking her tea round every night. I was working full time, with young ds and going round nearly every day.

Db and I started arguing about who was doning the most/doing the next thing. I am a teacher and all my hoildays were taken up with hospital/doctors appointments to the detriment of my ds. He had to come on all of them, as no one to look after him. He is a very patient person (fortunately!) but even he began to protest... Sorry I am ranting.

Anyway, I sat down and told my mum we just couldn't do everything. She agreed to social services, and meals on wheels, but then started finding other reasons for me and db to go round.

It was very hard, and I felt so guilty and stressed ALL the time ( I still do feel guilty)...I used to go on holiday to escape . To read this sounds awful, but I know exactly how you feel, and the ONLY way to survive is to be assertive. Yes, it will make you feel guilty, but you cannot carry on without your family and you suffering.

I have so been there. My mum refused any help and totally relied on me and my brother, this got worse and worse until my brother was even having to go round every evening to draw the curtains, on top of taking her tea round every night. I was working full time, with young ds and going round nearly every day.

Db and I started arguing about who was doning the most/doing the next thing. I am a teacher and all my hoildays were taken up with hospital/doctors appointments to the detriment of my ds. He had to come on all of them, as no one to look after him. He is a very patient person (fortunately!) but even he began to protest... Sorry I am ranting.

Anyway, I sat down and told my mum we just couldn't do everything. She agreed to social services, and meals on wheels, but then started finding other reasons for me and db to go round.

It was very hard, and I felt so guilty and stressed ALL the time ( I still do feel guilty)...I used to go on holiday to escape . To read this sounds awful, but I know exactly how you feel, and the ONLY way to survive is to be assertive. Yes, it will make you feel guilty, but you cannot carry on without your family and you suffering.

You need to get al your family together and discuss it, then talk to your mum. I really think older people don't trealise what they are doing. My mum was the most unselfish, indpendent person on this earth, but she became very demanding, and I don't think she realised it

I'm fortunate in that I'm not directly in the firing line for this kind of situation but I have seen enough to know how bl%dy awful and stressful it is. I do think some people of that generation still regard being helped as 'charity' or related to the Poor Laws, and thus something shameful.

My MIL is 88 and still pretty healthy but she can't manage the house now. She refuses point blank to have anyone help and it gets so cluttered that she falls over, with all the risks that entails. Hence my SIL, the only one nearby, spends most weekends cleaning and trying to get MIL to eat proper food. It's not at a critical stage yet, but one can see it looming on the horizon.

I've also watched a very dear friend struggle with her MIL, where anything suggested was poo-pooed and it caused an almighty disruption in the family. The MIL in the end died fairly suddenly and I think it was a relief for all concerned, but now an elderly aunt is in the same position and they are back to square one.

One thing I have grown to understand from seeing people experience such events is that it's virtually impossible to plan anything. I think our tendency is to want to put something in place and have it all neatly organised but life never complies with the plans. It seems to be a matter of coping with each crisis as it happens and then waiting for the next event. It does help to have people like the GP, Social Services etc onside and if you think a care home may be necessary, to have some idea of what's available and suitable in your area, in case the situation deteriorates rapidly.

Sorry I haven't been any help but you're not alone.

The other wildly infuriating thing that my mother would do was to refuse any help that my brother or I would offer her. For example When I visited (and my kids were v small at this stage, ds a babe in arms) she would refuse to stock up on non-perishable things in the shops that would help he in later weeks. She would refuse help with washing or cleaning etc. She would refuse to allow me to talk to her doctor etc.

and then should would moan that no-one ever helped her and that my aunts children were so good and so helpful etc.

She would also phone me, daily, with panics about her health while resolutely forbidding me from contacting her doc to sort out the issues.

She would also phone me, and moan about my brother's behaviour

Was that before your mother's dementia began, MB? It's very sad your mother has been ill for so long, I think dementia is such a horrible disease, the way it strips away the very being of a person.

This sort of behaviour was all in place a long time before the demenia started. She was forever 'painting' my bro and I as neglectful children because we moved away from home, something she never forgave me for.

When my dd was 6 weeks old I drove for 10 hours to see them (I was living in scotland at the time and dh was on exercise), all she did was moan about how little she'd seen of the baby.....and I'd had a section!

When the demetia started all these thing just got worse and worse. She bacame quite paranoid about money , was convinced that dbro was stealing from her (he wasn't). Eventually she accused me of being my father's love child and threw me out of the house. She has no idea of where she was living, and couldn't care for herself at that point. Initially we gor support services put in to keep her at home, but it was clear that this wasn't going to be enough to keep her safe, and she was sectioned. all very sad.

What kills me is that she is fair;y fit but has no mind, and dh has his mind and is dying at 45. so horribly unfair

I don't have time to write much now, but am just signing in so I don't lose this thread.

DH's gran is 97, still in her own home despite at least one stroke and a catastrophic water tank failure that took 6 months to dry out. I admire her spirit, but she insists on organising all her own care (such as it is) and isn't eating properly at all. And if the two dailies get ill, heaven only knows what will happen. We have found some lovely agencies, but she refuses even to meet them.

She thinks DH's sister should give up her job and look after her. (I am safe, for now, as 70 miles away with toddler).

whitecloud - I esp understand your problem as my mother has had bad depression for years, is letting the house fall down, doesn't go out, and I have tried any number of things, none of which have helped that much. It's vile, you feel powerless, want them not to be miserable, and it's impossible. Do you think there are underlying reasons for your mum's depression, or is it grief alone?

Indded life is so cruel, MB. The stealing stuff and being paranoid is quite common in dementia, from what I understand. Dh's father had dementia but he was kind of lucky in that he mellowed and seemed quite happy and unworried. He'd been in the RAF for 35yrs and the institutional regime in a home we think comforted him and felt familiar to him. He died at the age of 80.

vonsudenfed and everyone
About the depression - Mum had an underactive thyroid, undiagnosed for years because of her aversion to doctors. She wouldn't go out, has never been here to visit me or dh or dd. So it is all very deep-rooted.

Now she has to go back next Wednesday after a biopsy and X-rays on her mouth. It is swollen and painful. Still isn't eating much.

I'm going on Saturday. The problem with the depression is she says she can't cope with a lot of people around. Wanted me to go on my own but I've decided I can't. Am just going to say dh is coming to support me and do driving, shopping, etc. I'm trying not to feel guilty about that. Dd is staying with a friend. Want to support everyone else and her. It ain't getting any easier. Thanks for e-mails and support.

Is this thread still active please as i desperately need help & advice as to how to cope with my 82 yr old mother who refuses all outside help other than myself. I have contacted Social Services & am awaiting their visit to her for an assessment. What will this entail-does anyone know please? I am mentally exhausted with it all now. My poor mum is showing signs of dementia & her neighbours while wondeful, are all very concerned, as i am also. I only live about 20 mins by car away but there is only myself (& hubby when needed) to do the pension/banking thing,shopping,cleaning & most importantly to orientate her every day. She is blissfully unaware of her increasing confusion & really believes that her front door lock has changed when she can't get her key to work, that it's Monday one minute & Tuesday the next-literally,that the taxi man who she phoned to take her to her local Post Office at 8a.m on Sunday had it wrong when he tried to advise her that it was Sunday not her Monday pension day & why was the P.Office shut anyway on her Monday Pension Day-it's endless. As soon as i finish work i'm round to hers & then back home to start at my home fall into bed & start all over the next day, day in day out.I dread Xmas,family b.days,weddings etc-they all go by in a blur as she refuses to attend any of them & i end up addled to bits wondering if she's safe etc as i'm not with her. Mum won't accept that i need help & my husband is getting fed up,i know he is. My dad died 5 years ago & mum has slowly but surely deterioated since, this year has been particularly difficult & i'm really feeling the strain now. She won't see her Dr,thankfully she doesn't have any ailments as such nor is she on any medication, & heaven knows how i am going to get the Social Services assessors in through her front door when they turn up. Any advice greatly appreciated please.

Hi Rosie

Sorry to hear about your situation
have you spoken to your Mum's GP about this, and your concerns?perhaps you could request a home vist with you present.
With regards to the social services assessment, is your Mum aware and has she consented to the assessment?
If the answer is no then you may find it hard to take it much further as by law she has to consent, unless there is clear evidence that she is incapable of understanding what is being offered.( in the jargon 'lacks capacity')
Some local authorities have approved household agencies that do houeswork and shopping. This is usually a chargeable service but this may be of help to you.
IME the reality is some older people need to reach a real crisis, such asa hospital admission or a serious fall befre they will consider the suggestion of receiving care at home or realise that their families can no longer cope.
You should reassure your mum that in this day and age social services prefer to keep people at home, with daily support, rather than opting for 'going into a home'
Finally request a carer's assessment for yourself,even if your mum refuses to accept any help, she cannot prevent you from receiving carer support.What's on offer varies from authority to authority, but you may be eligible to receive carers break vouchers, for example,or direct payments to pay for a cleaner for your mum so that you don't have to do it.You should also be given details of any local carer support charities that at least can give you moral support, emotional support and advice.
(google carer support uk)

good luck,

To get my MiL some help my DH wrote to Mil's GP outlining her problems and suggesting that he called her in on some pretext. I think it was an over 80s health check. We took her and managed to stay in the room while he went through a few things.

He persuaded her that he was giving her medication that was difficult to take (a patch delivered drug) so that a carer would be organised to go in and help her with it.

Getting in carers (now twice a day) was the beginning of her being helped and has improved our lives no end. At least we know that she is checked up upon twice a day.

Dad has dementia and a lot of medical problems. He says the Gp and council want him in a care home and can make him go against his will, if deemed unable to cope on his own. He refuses a carer but it may be the lesser of two evils. Don't know where to begin with all this

As my username suggests, I am VERY TIRED and frustrated with this situation...To start, I'm not a "mum" but a son with an 86 y.o. Mom whom I live with. She is constantly whining about how "bored" she is...She spends more time in bed than being up and about. She's losing her vision and I'm no doctor by any stretch but to me she's also showing signs of mild dementia, her memory is terrible for things that happen that day or that minute but she can tell you things that happened 40 or 50 years ago like they happened yesterday. Anyways she WILL NOT GO SEE A DOCTOR, even for a general checkup. We (I have a brother and sister) even had a nurse and I believe a mental health pro come to the house to interview her and like always she convinces them that everything's hunky-dory...seems like a dual personality; when my sis or anyone else(don't get any visitors at all) come over she's in normal mode...she's talkative and alert and moves around with ease. When they leave it's instantly back to "whiny & helpless mode" and starts shuffling around like she's in pain or something. When the nurses came over it was setting her up to see a doctor and get her insurance updated and active again, they set up an appointment to get this whole process going and wouldn't you know it; the day of the appt she was in bed and I'm asking her to get up to get moving and it was NO I'M NOT GOING LEAVE ME ALONE GO AWAY!!! She just didn't want to get up...I know she's suffering from severe depression along with so called insommnia; she swears she doesn't sleep a wink but I check up on her and she's snoring away...I'm not alone, my older brother lives here too. I have three sisters of which one is nearby, the others are in FLA and TX. The one that is here is married with two grown sons so she has her family to take care of but Mom is always calling her every day just to talk or to ask about her finances which she handles. I could go on but it would be like a book...in short every day is the exact same with her; what day is it, what month are we in, is it day or night, etc. I'm just very frustrated with her cause she doesn't want to lift a finger to get herself to a doc cause "She's fine!!!!" and I know mentally she's not...I'm sure you all can relate or else we wouldn't be here...David