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Caring for elderly parents who don't help themselves - Carers UK Forum

Caring for elderly parents who don't help themselves

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Hi there,

I'm new to this place and have been amazed by the wealth of knowledge and advice around here, on all aspects of caring. I thought I'd post my story in the hope that somebody may be able to offer some pointers.

My parents are in their 80s and have been (unhappily) married for 56 years. They never had much in common and probably would have divorced if children had not come along, but anyway that's the way it is. Family life was punctuated by their arguments throughout my childhood, so it wasn't great. I have 2 elder sisters but I'm not close to them.

My parents both have health problems. Dad has dementia and is an alcoholic. He also has problems walking (knee/hip issues). He says his legs aren't painful, they just don't work properly anymore. Mum can walk just fine, but is extremely lethargic and over the last 5 years she has just given up on life. She has a history of depression but for years she's refused treatment/tablets for it.

For the last two years I've been doing all their household shopping and making sure their bills are paid. Money is one problem they don't have to worry about, so I'm thankful for that.

Dad's alcoholism used to be a severe problem - he was drinking a bottle of whisky most days and this exacerbated his other problems. Sometimes he had toilet accidents and a few months back we had to take his mobility scooter away from him, as there was an incident where he couldn't drive it home due to being drunk and passing out on it in the pub car park. They called an ambulance and the police got involved - that was when I knew the buggy had to go. I'd wanted to take it off him long before that point, but my Dad is very stubborn and independent so I needed a lever to persuade him. Mention of the police helped drive the point home. Anyway, since that time I've been able to wean him off whisky and onto beer (4 cans a day). Image This has calmed him down a lot and he hasn't had any toilet accidents since this new phase began.

Dad's dementia makes him a demon in the kitchen. He once tried to heat up a can of beans by putting the can straight on the gas ring! Image Another time he tried to eat a macaroni cheese meal straight from the fridge - then threw it away, deciding it wasn't very nice! (Wonder why?!?) For this reason I go round there most days and rustle up food and a cup of tea for him (left to his own devices he just drinks beer). His dementia is quite bad - he can't remember a conversation from 5 minutes ago, let alone what happened yesterday. However, his appetite is good and he eats most things put in front of him.

Meanwhile my mother sits in the corner, doing absolutely nothing to help him or herself. She hardly eats and refuses to go to bed, preferring to sleep in her chair. She has long ago stopped taking baths and I'm not even sure she washes properly anymore. She will wash her hair if I push her (which I do, when it starts to look dirty, but I don't like to nag her about hygiene issues constantly). She hardly changes her clothes and I don't think she even combs her hair between washes. She has developed a strong gag reflect and can hardly swallow any solid food without nausea. I took her to the doctors a couple of times and they gave her tablets to try to calm down the over active gag reflex, but the tablets didn't work. The next stage would be an endoscopy but Mum refuses to have any medical tests done. She is now surviving on a diet of milkshake, tea, sweets and chocolate. When I try to get her to eat anything else, most often she ends up in the bathroom, being sick. Sometimes she will say that even the sight of food makes her feel sick and her favourite expression these days is: "Don't bring me any food - I'll be SICK!" To me it seems like a very strange kind of anorexia and I feel frustrated that she won't have the tests done. I would hate to be on such a restricted diet and would be seeking answers/surgery if necessary to help me, but she is adamant she doesn't want any tests.

Sometimes I drive away feeling very sad for both my parents and the miserable time they are going through in old age. At other times I just feel sorry for myself, as I have begun to feel like their unpaid slave and I can't help resenting it at times. I also feel guilty most of the time (that seems to go with the territory). I'm lucky I don't live with them, but even on the days I don't see them I can't seem to get a break from them, as they are constantly on my mind. I'm forever asking myself whether I'm doing enough. Truth be told, we've never been close and I'd be a lot happier if I saw them a lot less, but I am trapped in the situation and have to accept that's the way it is for the time being. My sisters live too far away to be of any use.

On the plus side, we have employed a lovely lady as a cleaner/carer, but she is semi retired and only visits 3 times a week. Given the choice I'd like to increase her hours/visits, but she has her own family commitments so that is not going to happen. I did get social services to assess my parents a few months back, but the visit took place without my knowledge and my parents played down their problems and refused offers of help. I only found out about the visit afterwards, when I found a letter with their report in. We seem to have dropped off the radar now, probably because SS know that my parents have money so could fund their own home care if needed, but also they know that I live locally. What they don't know (and probably don't care about) is that I have my own health issues, which are exacerbated by this situation. I have chronic insomnia and get spells of depression too, so all this situation plays on my mind a lot.

I would like to get another carer in, to cover the days that the other lady can't cover, so I could step back a bit. However, I'm very anxious about the thought of employing somebody through an agency, because there have been such horror stories in the press lately about agency care staff neglecting old people. Also, I worry about security - I don't fancy giving front door keys to a bunch of strangers, but I know my parents would probably not answer the door to them (they're both quite deaf and tend to have the telly up full blast all day).

Apologies for the novel, but I'd be grateful for any ideas or coping strategies anyone can offer.
Hi, Image
First off,put yourself first,because if you don`t,and you make yourself ill,what use will you be.Do what you can...comfortably do.They have chosen their lifestyles.I know your Dad has dementia and your Mum has mental health issues,but their lifestyle choices were made a long time ago,the illnesses have come along later.Do not allow yourself to feel guilty because of your inability to be everywhere at once.You have a life too.
Regarding care staff,you could always advertise for one directly,and pay them directly.Social Services will be able to advise you,but basically you need to interview them,get references,check they have an up to date criminal records bureau check,and sort out paying national insurance and arranging private insurance.Sounds a lot but it`s really quite straight forward.I found Age UK very helpful,though i don`t use carers anymore as i am here now.Hope that helps. Image
Hi and welcome to the forum. I can't really add anthing to what Michael has said but I can sympathise with the alcoholic 80 yr old. My FIL is 87 drinks 5 pints a day at the club and has several large whiskies when he gets home Image Nothing must interfere with his drinking habits all appointments must be in the morning before the pub opens. He frequently has 'accidents' of the toilet variety but will not admit the booze has anything to do with it.

Take care of yourself
Hi and welcome Image
Hello and a warm welcome Image

I found your account of the situation fascinating and well told. What a tough situation for you to deal with - on an emotional level as much as anything else.

Although care staff employed by agencies sometimes get bad press, and often for good reason, there can be some very good reasons why it might be better to approach an agency rather than looking to employ someone directly. Eg staff are trained, have been checked regarding any criminal record, and replacements are given when staff are absent. If you do proceed to employ someone directly, then do your best to ensure the arrangement is safe. Get advice if you need to. And please dont rule out approaching Social Services once more. It would not be the first time an elderly couple said they were coping well after a son or daughter had asked for help. My parents were exactly the same. But it sounds like you need to do one of these two things, otherwise you will be even more affected in the fullness of time.

When you get more help in, things will change. In some ways things will improve. But there will still be issues - emotions and stuff that wont go away. And sometimes, life is not neat and tidy, by which I mean every problem does not always have a neat answer. I'm not advocating a 'do nothing' approach exactly, but some element of acceptance is usually helpful alongside taking positive action to get more support in to your parents.

I hope you stick around. This site is full of helpful people able to offer good advice and support. The support bit is key regarding living with situations ( 'acceptance' ), and dealing with some of the emotions that don't always take a back seat.

Enough rambling on. I wish you well. And your parents. And welcome again Image

Robert
I'd like to start with the subject of money. Firstly, do you have power of attorney for dad and mum. Are you their DWP appointees? Dad is entitled to Attendance Allowance, so if he hasn't claimed it, ask the DWP about appointeeship and then you can claim it on his behalf. It will then enable you to buy in more care. If their savings are under £22,000 or thereabouts, then social services could contribute towards the care. Then you need to have a Carers Assessment done by Social Services, you opportunity to tell social services what really happens. There are a lot of children supporting parents on this site whose parents don't tell SSD the whole truth - my mum included. Has mum given up because she doesn't want to live with dad and his problems any more? Has she expressed an opinion on the future? Have you thought what will happen if dad gets any worse, and then what would happen to mum? It's so difficult trying to support parents under any circumstances as they become more frail, even worse if they've never really liked each other that much. You can't go on being Superwoman - I tried that once and ended up very very ill. You can't be forced to care either. What does their doctor say - have you seen him/her? If you can think about these things before the Carers Assessment and write it down beforehand, it will hopefully help the social worker to find a satisfactory solution with you. Take care.
Wow - so many helpful replies already and such a warm welcome - thanks everybody! Image You've given me so much food for thought I've had to make a list before I can reply properly.

Minnie: "...best to just go along with most things" - yes indeed, I know exactly where you're coming from, especially on the hygiene front - the way they behave when confronted by hot water you'd think they had rabies! Image I find this aversion to water very strange but it seems pretty common in elderly people with dementia. Ideally I'd like them both to be washing regularly and having a bath once a week, but it's such a battle and if I were to push this point too much we'd be at loggerheads constantly. My mother will wash her hair when pushed, and will agree to wash her feet in a bowl before I take her to the chiropodist. (I run a bowl of hot water and put a little Carex handwash in the water, then she soaks them for a while. Next I change the water and she rinses them - sorted.) However, she gets nearly hysterical if I try to get her to have a bath, so I dread to think what's happening to the bits I never see. Dad used to wash regularly but seems to have stopped over the last few weeks, I think because his legs are too weak for him to stand for long. He can hardly climb in and out of the bath and won't let anybody help him, so he rarely has a bath. However, I've now persuaded them to have a large walk in shower cubicle installed so they will be able to sit on a special chair and shower instead of taking baths. It's going to be installed in a couple of weeks, so I'm hoping for a good result on the hygiene front soon.

Michael Parker: "their choices were made a long time ago, the illnesses have come along later". Wise words - thanks Michael, I hadn't thought of it like that before. I guess in some ways their chickens are all coming home to roost now.

Booksey: "Nothing must interfere with his drinking habits" - OMG that is SO familiar!!! Also the fact that your FIL is in denial about his problem. Dad was just the same until the infamous incident with the buggy where the police were called. He was appalled and embarrassed when he realised that he'd caused problems and inconvenience to his drinking pals. Later on, he then began to finally realise that it had all affected his family too. Pity it took so long for the penny to drop, but at least he's on an even keel now.

Myrtle - love your tag line!

Robert: "...emotions and stuff won't go away" - you hit the nail on the head there! The acceptance point is very relevant too for me, as that is what I struggle with, every time I see them and the way they behave, esp. my mother's behaviour.
Bowlingbun,

I don't have power of attorney but luckily that's not an issue (yet). We did look into this a while back, but due to my father's dementia and drinking I'm not convinced any solicitor would sign off on a POA, because my father can't really follow complex conversations these days and I'm sure that would become obvious to any solicitor. My mother may agree to this, but in my mind I'm not convinced of the usefulness of a POA, because I've heard stories about people still having to go to court about various issues, and medical/SS/bank staff doing what they please and ignoring the POA when it suits them. What I have managed to do is to get them both to sign a letter which has been lodged at the bank, informing them that I have authority to discuss their finances with bank staff and assist them with their internet banking (amazingly Dad took a computer course when he retired and actually used to do internet banking). I bank at the same branch as my parents and the staff all know me quite well.

When I need to buy their shopping or get cash to pay the cleaning lady my mother lends me her debit card. I know that strictly speaking the banks don't like people handing over their debit card and PIN number to anybody, but I gather this happens a lot with elderly people and my parents know I won't abuse their trust. They are quite well off so would not qualify for any help, but I probably need to get them back on the radar with SS before things get much worse. I'm lucky they don't have any money worries, but very aware that if my father ends up going into a home his savings could all disappear in a couple of years. Ah well, at least having money will give us choice if/when that time comes. The doctor tells me that elderly people tend to do best staying in their own home, provided there is care in place to support their needs, and he's probably right. Of course, there's another reason why he may be less than keen to see his elderly patients go into care homes... to do with finance. I believe that usually the GP's practice gets the bill for the first 6 weeks when elderly patients go into care?

Attendance Allowance...mmm, I'm not really sure that Dad would qualify for that, because the criteria seem to involve him needing constant care during the day (minimum of 35 hours per week or something like that?). I don't see how we could argue that he needs round the clock care when he's getting by on just one visit a day (though I know that's not ideal but at least we make sure he eats something and drinks some tea - not just beer). He's not registered as disabled, though maybe he would fit that category now?

The doctor has sort of washed his hands of the situation, saying that my parents are still considered mentally capable of making their own decisions. This was based on their scores from that silly mini mental health test they did on them a while back - talk about scratching the surface! But even if I got them fully evaluated by and EMH specialist, I'm not sure what use it would be to have it confirmed that my Dad's dementia is getting worse and my mother is depressed/anorexic/slightly demented herself. These things I know already and don't need a specialist to confirm it to me. It's probably going to be much more valuable for me to have the help offered by other carers on this website, than to ask the doctor for help. Last time I was in the surgery I got quite tearful, and the GP said that he can't really help us, because it's not a medical problem, it's a social care problem. Thanks a bunch doc!

I've asked Mum several times if she'd like to live somewhere else, away from Dad, but she flat refused to consider it.

PS: Posted this bit separately as found that site has tendency to lose long posts before I manage to finish them. (20 mins time-out?)
It's not the doctor who pays the first 6 weeks in residential care, it's social services. Incidentally, my doctor is as useless as yours in supporting me.
You might find it helpful to get a copy of the Disability Rights Book (see the top of the new carers section). It explains far better than I can who qualifies for Attendance Allowance - you don't have to have someone with you 24 hours a day.
I have an old style Power of Attorney for my mum, who is physically disabled and housebound. I have my own Mastercard for her account, which is then paid off monthly. It makes things a lot simplerfor me. I can take out money from her account on the way to see her, and buy anything she wants without going to get her card first. The POA makes banking easier - if the bank didn't respect the authority it bestows on me (in law, I am my mother) then I would make a formal complaint. (I've done this in the past and each time £100 has gone into my account as compensation). Sadly, it is now only a matter of time before there will be no alternative but for you to take full charge of the money side of things, the more you do now, the easier it will be later. Hope that helps.