Need some help. Visiting my elderly father is excrutiating.

[needsomehelpwiththisone]

I've done a new account for this post but I've been here for a long time.

I am desperate for some advice about visiting my elderly father, because I feel like the world's biggest bitch and I don't know what to do.

Background: We have nothing in common. We did not get on well when I was growing up. I am an only child (relevant). My mother is dead (also relevant).

A few years ago, dad, by then in his mid 80s (now late 80s) moved into sheltered accommodation about a half hour drive from me having previously lived seven hours away at the other end of the country. There was really no other option as due to my own poor health I could not make the visit to see him any more and he was all alone and beginnig to struggle on his own. Until the point where he moved, we saw each other once a year, perhaps twice at the very most - I would go "home" to visit for a couple of days at a time and we'd both be climbing the walls after a day. Visits were only ever two days at the most. My father is very insular. Conversations consisted of "Do you watch this television programme?" and nothing more. He was never interested in anything I had to say, so I didn't bother to tell him what was going on in my life. It was painful.

Now he lives near me and is older and still on his own, I am expected to visit once a week. In principle I agree with this, he's on his own after all and I'm his only living relative. But I find the visits absolutely excrutiating and I'm beginning to put off going. We are not close, and we have nothing to talk about. He doesn't listen to anything I have to say, so there's no point telling him anything. I arrive, I take him to the shop, but this only takes half an hour at the most, and then I don't know what to do. We sit there in silence. He doesn't do anything except watch television, so I can't ask him about his day. He's also very deaf, so conversation is almost impossible, even if he was interested in anything I had to say.

He also insists on phoning me twice a day just to "hear my voice" (he can make out my voice on the phone, apparently, but nobody else's). I understand why, he's very lonely, but I don't know what to say to him then either and vice versa. I have no clue how to relate to him at all and never have done. Our relationship growing up was fractious and argumentative and unpleasant - he's mellowed with age - but there are no nice memories to sit and talk about. I sometimes take him out for lunch, but again, conversation is so difficult that we sit and eat lunch in the pub in silence and then I take him home again.

Please, what can I do to make these visits more bearable for both of us? Not going is not an option, since he will call me and beg me to go if I don't. I dread going. I put it off for as long as humanly possible. And I feel terrible.

There's also always a tinge of "he hates where he's living and he's miserable and it's all my fault because I found it for him and moved him there" going on.

He does say he likes the food, though. He's very positive about that.

He has dementia undoubtedly as I could have written this post about my MIL who lived in sheltered accommodation round the corner from us as we thought it would be easier. The constant phone calls, the anxiety, refusal to allow others to do things and insisting on only us helping her. Demands were unbearable and we had to screen calls but she would phone emergency services if she could not get hold of us. Only difference is we did love her but gradually grew to hate her due to the demands which I actually think is worse than if you didn't have a good relationship in the first place. It only stopped when she went into residential care near my BIL as there was nothing affordable down here in Cornwall. By then she could not use the phone any more and had completely withdrawn so all BILs input was on his terms.

You have had many suggestions. A few things we did was to put boundaries down. You may be his only living relative but honestly if you are disabled and have health issues you are no use to him burned out. As others suggested when you take him to an appointment just stay for a cup of tea and be firm. Just say you are busy or have to work. Telling him you are ill will make him more anxious and he can't empathise any more. Dementia does that and if he was like that before he won't magically change. I would talk to him about his past. That is something most people with dementia can still recall. Take some music in on an iPod or something and listen to it together. Read a book to him or a newspaper and when he complains, as he will, cut the visit short.

The phone calls will need to be screened and you accept the ones you are willing to. My MIL rang our landline which had no note of missed calls unless we recalled the log and we got rid of the answering service as it panicked her and thought there was a woman in our house telling her we would not answer her calls. We reiterated constantly we were out working. We turned the ringer off at night and sometimes during the day but you are correct it is a niggling irritation and we constantly worried about missing really urgent calls. Can you put a setting on your phone so you are not alerted to missed calls?

The bedding thing is hard but if you can't sort it on one of your visits you have to tell him firmly you cannot do that and he must let the care home deal with it. Otherwise he will be sleeping in dirty linen but that is his doing, not yours. You are physically unable to do it but he won't let anyone else do it. There is an impasse but it is of his making. Tell the care home you cannot do it and they must. They can't make him allow this but eventually he will see this as the new norm and allow them to change it. In the meantime you need to let go of the guilt around this.

If you were not around he would have to cope or he would be put in a facility with higher care level. Accept that and give yourself a break. For your own health you need to realise you won't change him so you need to change the way you react to his behaviour and almost shut yourself off so this is not your dad. It should be easier for you as you did not have a good relationship in the first place. We loved my MIL before the dementia changed her. It ruined the last five years of her life.

Sorry, @PandorasBag, I missed your question - no, I don't have POA. It's been difficult to organise because he doesn't know anyone who's known him for two years who can sign as the person who talks to him to make sure he knows what he's doing, and without that we can't progress the application. I spoke to the POA people about this and they were stumped too, they couldn't quite believe that he didn't know anyone, but he really doesn't, apart from me, so the application ground to a halt.

Apparently the doctor can do it, but it costs £200 for that visit and he won't pay it. Even though he wants me to have POA.

To be honest, I'd pay the £200. If you then get both kinds of PoA, the money will be an expense incurred related to his health care and you can move the money back.

Will I even be able to get POA now, if he's under the memory clinic and doesn't have capacity? They have to have capacity to be able to sign it, don't they.

I do have access to his bank account through online banking but it doesn't feel right paying out money.

The POA is vital. I have it now for my mum who is widowed now and has Alzheimer’s. She is nothing like your dad In that she is cooperative to the best of her ability but she’s a little further down the line, and without poa there is so much I couldn’t do for her.

When will he have been there for 2 years? Is there a manager who could help?

What a difficult situation.

You have to get over the feeling that it’s not right to use his money. If you are struggling and he barely spends anything, use some of that money to support you access to him. You seriously need to make this as easy as possible for yourself for his sake.

i can't remember exactly when we got my father in law's POA tut it was at a point when there were certainly gaps in his memory. (He'd completely forgotten about a serious health issue that he'd had a few years back. That sort of thing.) I think that the lawyer has to be satisifed that they understand the decision - and what it means - that they are making at the time they're making it. Having some memory problems doesn't rule out having the capacity to give someone POA because so many elderly people begin to realise they're getting a bit forgetful and think 'Oh I'd better sort this out so my daughter can sort everything out when I get more muddled.' Again someone on the Talking Point forum would be able to give you more advice and refer you to relevant links.

I honestly think you have to pay some money to get out of this mess. It's about what is in your father's best interests as well as yours. His quality of life at present sounds very poor and it would be possible to make it better via accessing more appropriate medical help and social care.

You need a POA. He has to be lucid when he signs it but most people with dementia do have times when they are more lucid than others. My MIL was with it late mornings. Can the care facility help or has he not been there long enough? Or take the £200 from his account and ask the doctor. Technically you should not operate his account without one. If he won't cooperate tell him you can't sort his finances out. Presumably it is only the care facility which needs paying for?

No, I don't "operate" his account. He asked me to set up online banking so I could check his balance for him, he panics about money and I can't always get over to take him to the bank to check it, and he can't use phone banking because gets very anxious about all the security questions because he doesn't understand what to do (and can't remember the answers anyway). I've never touched it to do anything other than check his balance and report back to him, and to set up the direct debit for his meals where he lives.

Yes his quality of life is awful, I know that, but if he won't do anything or accept any help what on earth can I do? It's almost like he enjoys everything being so awful, I know that sounds awful but I can't think of another way to describe it.

Also, it's not a care home. I do keep specifying that it isn't. It's a complex run by a housing association that has a warden.

His rent is all paid by HB direct to the housing association and doesn't go through his bank at all.

Honestly, what can I do to make his quality of life better?

He won't socalise. He won't go anywhere. He won't go to a day centre.

I've had social services in to assess his needs and this is what they've given him - a carer's visit once a day to make sure he's wearing clean clothes, washing, and has a clean room - and he tells them to go away most days anyway (I have access to the online notes system, so I can see what they've done every day and what they've written, it's always "nothign required, refused this and that, sent away". Social Services haven't suggested anything "social" at all, which he wouldn't do anyway even if they did. They mentioned a day centre at one point, but I would have to take him and I can't, and he doesn't want to go anyway. I tried to get befrienders in, he sent them away (the poor volunteer, it wasn't her fault) and was cross that the volunteer didn't drive and he would have to pay for a taxi if he wanted to do anything.

What else can I do? I don't know what I'm supposed to do to give him a better life except drop everything and spend all day every day with him which is what he wants, but I can't.

It sounds harsh but don't try to make HIS life better, that is not something you can achieve at the moment.
He is safe, fed and watched over. You are doing all you can.
Until you get into a more stable place, there is nothing more you can do for him.
Concentrate on managing your own reactions, get your feelings & situation under control, look after your health, then once your life is more secure, then you can face the challenge again of trying to improve his quality of life, against his will it seems.

Hope you get some peace somewhere to find a bit more strength. Can you find a bit of time for mindfulness for you? Sounds trite, but even half an hour of yoga or something may reap dividends.

Thank you. I just don't know how to "improve his quality of life". Everyone says it's terrible and I know it is but what can I actually do to make it better? I've had all the relevant agencies involved and this is what they've given him. I've got him to the memory clinic, we're waiting for an appointment. Anything else he refuses.

Is this just "how things are" for old people?

I think sadly that is the case.

Okay, my take on it is that you do - despite your awful childhood - have a sense of obligation and want to do something about your father rather than just cut him off.

So I think given that your personal communication is unlikely to improve all by itself or via you trying to 'entertain' him, what you can do is make sure you've explored all avenues to ensure his health needs are being met my professionals. (The pressure on NHS funding means having to be quite savvy and work at this.)

I think the appointment at the memory clinic and a PoA appointment are the key issues at the moment. Maybe also a conversation with the the warden of the sheltered home and/or the care agency to see if they note any deterioration. And also register on the TalkingPoint forum where you'll find people who are facing the same challenges as you, and who will be able to give you helpful advice about how to solve the practical difficulties you're having in relation to your father.

I think finding out more about dementia might also help as this will make it all less oppressively personal.

Sadly, yes. Unfortunately ime older people revert to childlike behaviour. They can be demanding, petulant, very, very selfish and capricious. It's sad but even if you previously got on well, ageing and demented behaviour can cause the best of us to become annoyed or despairing of our nearest and dearest.

It seems par for the course that many elderly people refuse carers, or irrationally dislike carers and only want their dcs (make that dds) to help them. And they strenuously deny any losing of faculties. Mil went into the worst of rages when dementia was suggested and the GP was involved.

Anyway, when fil was about in the same state as your df, I used to just ask him about his childhood/early jobs when I visited. Otherwise, as you say, there was just nothing to talk about. Dh found it very difficult as he is not such a good questioner (interrogator!) as I am and also wasn't interested himself in fil's past, whereas I was and actually found out all sorts of interesting (scandalous!) things. Just asking questions worked quite well. Don't expect to be asked questions back or for your df to show any interest in you. Leopards don't change their spots and old leopards have zero interest in other people, even their dcs and gcs.

Thanks @PandorasBag

I think the medical side of it is under control. He's had the memory tests with the memory nurse, and the brain scan (and the ECG they wanted) so now we're just waiting for the follow up appointment with the actual doctor at the memory clinic.

He has a district nurse comes in twice a week to dress his foot. All his flu jabs etc are done at home, and he's registered as housebound so that if he needs a doctor they will go out to see him. All his medication is done in blister packs and the chemist delivers them automatically. He doesn't really have any other "health problems" as such, so that side of things is all running pretty smoothly.

It's the social side. There is none, and I just don't know what to do to make that better. He doesn't even phone his friends any more from home because he says he can't hear on the phone (but he can apparently hear well enough to phone me twenty seven thousand times a day, so I don't know whether that's true or not).

Mum had dementia, so I've already seen it once. Hers was vascular though, and she had the "not remembering who people are" thing and the violence thing. Dad doesn't have that, he has the short term memory loss and mental health issues.

It's the silly things. Like - how do I make sure he has clean clothes if he won't let the carers do his washing? How do I make sure he gets a haircut?

There's a mobile hairdresser that visits the complex but he never seems to go to her any more, I think he forgets when she's in. So I took him to the local barbers, but after about ten minutes he kicked off that the barber wasn't attending to him immediately (there was already someone having their hair cut when we got there and we had to wait) and he demanded that we leave. I've asked the warden to remind him when the mobile hairdresser is in, but six weeks later he still hasn't had his hair cut and he'd not had it cut for months and months before that even so it's all over the place.

My father in law stopped phoning people. I think he probably had difficulty dialling the numbers - or a lack of confidence that he would get it right. Again initiating conversation and responding appropriately to people depends on memory (of faces/of what they just told you.) So social withdrawal comes with dementia, I think. The person with dementia knows that something is wrong and feels very frightened and wants to avoid situations in which their weakness will be exposed. When my father in law received his diagnosis his first question was, 'Will I have to go into an asylum?'

Obviously each situation is different, but we were certainly very worried by the way in which my father in law isolated himself - feeling that this exacerbated the dementia, even though it was his defence against it. And he really was transformed in the care home.

I also think relatives can get so used to the memory problems - they build up slowly - that they don't really see quite how disabling they are.

(Sometimes relatives can get reluctant parents to go by saying it's respite care.)

I'm going to suggest that you do the opposite of what your head is telling you to do, for the sake of your heart.
Half an hour each way is too much for you so move him closer, into a home where they actually will ensure that he washes and his clothes and bedding are clean.
Then pop in for 5 mins only every day or two. It will reassure him which will hopefully cut down the relentless phone calls. It will make you feel less guilty about hating the visits as they will be less onerous/awkward. Then any irregular outing can be something which is planned for and anticipated and he has to want to do (and show some enthusiasm for or you won't take him).

It's not unreasonable to ask for a reassessment of care needs. They change & need to be updated. You're ability to contribute has changed so his needs should be reassessed. You're disabled & can't provide the support re linens, day-to-day tasks. I've found I have to be very careful when dealing with the people doing these assessments. We're conditioned all our lives to be agreeable & 'good girls'. If you request a reassessment you have to make sure you don't find yourself agreeing to tasks you can't do. No, I have to work, I have a disability, I have to rest. The assessors seem to have secret skills to make you agree to things. I always describe the worst day, not the average day.

Your point re POA- if he has capacity then he has capacity. Everyone says he has capacity, so can still sign POA. Get him to pay the £200 for the drs visit. He's not making good decisions.

I have experience of being an unwilling carer - FIL DF and a DS who has ASD & is non-verbal. With my son I was desperately frustrated at the endless repetition- visiting same places, watching same cartoons over & over. I honestly felt like shrieking. The solution for me was audiobooks, bizarrely. I have a small earpiece that connects to smartphone via Bluetooth. I have the audible app on my phone. I can sit through all the stuff & reassure him but I'm entertained- the phone is in my pocket, so he gets attention. It helps me hold myself apart from the task somehow.

With my DF, who is v ill but similar to your dad in a some ways- conversations were so one-sided. I used to bring a small local paper and read out bits to him. Is there a local paper from the area he used to live in?

It sounds like he is reassured by your presence but he seems lost in his anxiety. You're probably the only constant for him. Do whatever it takes to improve things FOR YOU, not him. Caring for an elderly relative is a marathon. You're definitely not alone in feeling as you do. Sometimes life is just shit. Not all problems have solutions, so you just have to do whatever you have to do so you can maintain your sanity.

It sounds like he is reassured by your presence but he seems lost in his anxiety.

Yes. This. He can't see anything other than "what do I do to alleviate my anxiety" and if that means calling me thirty seven times until I pick the phone up, that's what he does. There's no reasoning at all that "she might be working/asleep/out/whatever" - he just doggedly does it until he gets the result he wants. He's always been a bit like that - it's just got worse as he's got older. I acutally wondered at one point if he has some kind of OCD. He definitely has very severe anxiety.

I don't even know how I'd go about getting him into a care home, if he were agreeable to it. It's not like I can just pick somewhere nice off my own back, we don't have money for this, so I guess we'd be reliant on the council to "put" him somewhere, and it might be awful. Do you even get any choice in that situation?

With Mum's dementia it was different. She suddenly started displaying violent behaviour, so the social services people litearlly came and took her away and put her in a home the same day I called them for help - she was gone within two hours of them arriving. We didn't have any choice about where she went or anything; they found a place in a very local home and took her there.

Does he have the £200 for poa? He wants you to have poa. Take the money out of his account to pay for it if so.

You have to get this but sorted or you come unstuck.

You are actually doing an amazing job but your capacity isn’t limitless. His physical needs are being met and it is not NOT your responsibility to create a different, social person out of this rather negative man who happens to be your dad. He’s not a child. His choices may be hampered by mental health issues but his choices not to do anything about that are a reflection of the man he was before he was old and had impaired memory. Why would he change?

You are doing a great job, but things will change and you have to think of yourself. His lifestyle is as a result of his personality. Not a lack of caring on your part.

My Mum is happy because she has the same care your dad has ( actually I do much less for her than you do for your dad) and is kind and gentle and sociable - always has been, which your dad never was! You can’t be expected to perform miracles.

Do the business - get hard-nosed and get him to pay for his poa.

Frankly I think it's Care Home Time. There comes a point when an elderly person becomes just too much. Often it's not just the physical care, it's the having to be there for them all the time. Then either you have them in your home (which is something that everyone I know who has done this says DON'T) or you need to convince them that they would be better off in a setting where they would get more help.

You could spin your df a line, such as you are going on a 3-month holiday/moving house etc etc and won't be there to visit/take calls, so he might like to try a home where people could look after him better.

Don't delay with the POA. We had to pay a doctor to declare that mil was of sound mind (she was far from lucid!) It was an emergency as otherwise you are at the mercy of the Court of Protection for organising your parent's care and finances.