Realised this week that this is his main issues - he just cannot cope with being ill.
This week he swore blind he was really ill, wasn't sleeping etc etc. Of course, when I get there he's got a minor cold - not even that bad! Not the first time.
In the last few years, he's called ambulance many times, called his GP to his house many times. Both of which now refuses to come.
He's feigned chest pains/can't breath more than once to both me and the professionals. He argues with doctors who say they can't do any more - usually re: his knees (which at 84 aren't going to get better). (In all honestly, he's not too bad for 84).
He once had a chest infection that doctors told him about 10 times he needed to just rest. He was convinced he needed to be in hospital - they refused. Next day he "hit his head" on the cupboard and ended up in hospital (Where he wanted to be all along). 99.9% sure this was self-inflicted to get his way.
He gets into a state too because he's ill. Makes it 100x worse. He had an issue with swallowing. Doctor told him it was a stress related thing. He wouldn't listen - he always says theres no such thing as mental illness, depressions, stress etc- its all made up by people who are attention seeking. (yeh right Dad!)
Part of the problem is he's got an idea in his head that if you're ill you go to the doctor they give you a pill or something and you're cured. Simple as that! Obviously, its more complicated than that.
As he gets older I worry about how he's going to be. He has a cold now and he tells me how ill he is, how he's not got long left, and how down he is.
In all honesty, I hope he goes when his time is right and I'd hate to see him have a long period of actually being properly ill because he wouldn't cope at all. Is that awful of me?
That doesn't mean he ought to have been admitted to hospital for treatment. If he has chronic lung disease it's going to flare up from time to time and it's not appropriate to treat it in hospital. It means he ought to be living with more support.
You can pat his hand and say poor you and let what will come to pass come to pass.
Or.
You can look on this as an operational project: source the right care home or sheltered housing; go and look at it; talk to the admissions manager; organise an assessment for your dad; take him to it as a fixed appointment and fait accompli; and essentially boss him into moving.
It doesn't matter which route you pick, but you'll be more comfortable if you plump for one or the other.
No he doesnt have lung disease at all.....
https://www.linc-cymru.co.uk
The 10 Eden Alternative Principles
1. The three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our Elders.
2. An Elder-centred community commits to creating a human habitat where life revolves around close and continuing contact with plants, animals, and children. It is these relationships that provide the young and old alike with a pathway to a life worth living.
3. Loving companionship is the antidote to loneliness. Elders deserve easy access to human and animal companionship.
4. An Elder-centred community creates opportunity to give as well as receive care. This is the antidote to helplessness.
5. An Elder-centred community imbues daily life with variety and spontaneity by creating an environment in which unexpected and unpredictable interactions and happenings can take place. This is the antidote to boredom.
6. Meaningless activity corrodes the human spirit. The opportunity to do things that we find meaningful is essential to human health.
7. Medical treatment should be the servant of genuine human caring, never its master.
8. An Elder-centred community honours its Elders by de-emphasising top-down bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the Elders or into the hands of those closest to them.
9. Creating an Elder-centred community is a never-ending process. Human growth must never be separated from human life.
10. Wise leadership is the lifeblood of any struggle against the three plagues. For it, there can be no substitute.
Okay, the cynic in me is chuckling heartily, I admit. If they manage all that lot all day every day I'll eat my hat.
But there is a point here. To do with whose side any given care provider is on.
When you are your father's primary carer, there is a problem. What he thinks he wants-and-needs necessarily comes into conflict with what you can reasonably do. The conflict creates an oppositional relationship. This is misery for both of you.
If you are just once able to plug him in to one of the better service providers, your only problem will be accepting that their understanding, expertise and principles of care are infinitely superior to your own.
But of course they are! They have training, experience, resources and vocation all on their side. The only thing you have over them is the love that comes with a blood relationship. And where is that getting your Dad, then, eh?
it's a question of horses for courses. You can't give your father what he needs no matter how much you want to.
Hes got an idea in his head that you "put someone in a home to die". Any mention of it and he'll say "if you don't want to help me I might as well die now".
I keep trying...
People want to know that others care and and that's why they call the dr., go to the ER, want to get hospitalized... They then feel that they're being cared for.
If you are able to simply be empathetic to how your father feels without discussing his "illnesses", you may have greater ease in your life.
You could say something along the lines of:
"I understand, Dad, how sick you feel. It's really hard to go through this feeling that your body is falling apart on you. Being elderly certainly isn't easy and I really admire how hard you work to stay healthy. It's a real challenge and I admire your resilience in dealing with everything that happens to you."
If he says that you should then take him seriously and get him to the hospital, tell him that you understand his frustration that the hospital and doctors don't seem to fully understand the extent of his complaints... Since he doesn't believe in depression or emotional/stress induced symptoms, I'd simply stay focused on validating how he feels that he cannot get the help he so desperately wants.
I have found that when we validate how someone feels we can help to ease some of the pressure and tension and reduce some of the demands and perceived emergencies...
Wishing you ease... and we breathe
I did all of this one Xmas day. Spent hours and hours at his house when he was down like this - Literally saw my 3 year old for about an hour or two that day. Its not something I am willing to repeat - its just not fair.
That he wants to go to hospital seems like he would be a prime candidate for AL or senior housing or even a LTC facility. He can have his needs met and have as much interaction with others as he pleases.
I would focus on getting him placed sooner than later. I bet he is as happy as a clam once he gets in and settled.
I agree he'd be better off but as in my other post hes set in his ways and won't even consider it. I know he'd be better.
When he has been in hospital he loves it. Goes on about how lovely the nurses are etc. That Dad to a T - he likes to be fussed over.
Being somewhere where a nurse/carer could fuss him every single day would be ideal for him.
Don't ask dad if he wants to go. " I'm taking you to lunch today, dad. Hop in the car".
In my experience, trying to get someone of your dad's age and mindset to agree to something he's made up his mind about is useless. You have to show him. Not tell him.
"Dad don't you think it's time you thought about living somewhere you can be better looked after?"
"Dad, we're having lunch at a place called Llys Enfys* today, get in the car."
Once there, you do have lunch first; and then you leave it to the people who know what they're doing to show your Dad round. And if he doesn't take to it, what have you lost?
*e.g.
It didn’t sound as though his main issue was that he couldn’t cope with being ill - more like he couldn’t cope with not being the centre of attention. My own last post to you was to stop worrying about him, and your reply actually agreed. Now the more important issue, and the one that you can control, is how you and your wife and children are going to cope with him as his trials progress.
I am sure that this is very hard to handle – you have been socialised into this for your entire child and adult life. But you are an intelligent man. Think about it.
I would try to get him in for respite and see if he likes it. It would only be a set amount of time, so if he hated it no big deal. On the other hand it may just be the solution.
You and your brother know your dad and know what scratches his tail, look for those things when researching a place. Nobody wants to loose their independence but needs win over wants when a person can no longer safely live on their own.
However, if this is all about him being to needy or your time and you can't deal with it, you need to set boundaries and stick to them. Only see him and do for him when you want, this will help with the resentment you are building up.
Aging, needy parents feel like a rock and a hard spot sometimes.
Once I figured out that my dad could not articulate his thoughts very good and thereby saying some really blood pressure raising things, it helped me not be so pizzed at him.
Best of luck finding your boundaries and sticking to them.
The EMTs will not come because he has called wolf too many times, same with Dr. Dad is taking up time that is better used for people who need help.
If you can, make an appointment for yourself with a mental professional who deals with these situations. I'm surprised one wasn't assigned when Dad was in hospital to help YOU.
Explain EVERYTHING you're going through and the professional will help with ways and be a part of this on going issue.
The professional can acquiesce to Dad and place him in a rehab for as long as Medicare covers. He will have 24/7 attention, you'll get some rest. These rehab professionals will FORCE Dad to work with want he "thinks" is the problem with physical therapy etc.
When he's released, they may have a physical therapist assigned to come to the house and keep working with Dad, paid by Medicare.
If he continues these "illnesses", the Dr can write a script to place Dad in a nursing facility and Dad will not have a choice. The Dr has legal right to do this and Dad cannot override. The Dr will force Dad by sending people from the facility to take Dad forcably if necessary.
I had to place my Mom in the hospital but she was the opposite of your Dad. She had such an extreme UTI and the house was infested with bed bugs (I live out of State and was thrown into the situation). When the EMTs came, they too had been to Mom's house many times.
Mon would not go with them, so I told her she had 2 choices
1. Let me place the safety belt around her to help lift her onto the guerney
2. I would spank her with it AND she was still going to the hospital.
She got quiet (EMTs were laughing outside), I got the safety belt, told her what I was doing and then she ELBOWED ME IN THE NECK SO HARD I STILL HAVE TROUBLE TURNING MY HEAD TO THE LEFT.
Helped the EMTs and got her to the hospital. The UTI was so bad it could have killed her.
Work with Dad's Dr behind Dad's back because it appears Dad could have mental issues.
How long ago did Mom pass? You didn't say anything about if she did or in a facility. He may miss your Mom so much he is trying to get the attention Mom gave him.
NEVER take his chest pains and lack of being able to breathe as another cry of wolf. Per our daughter (RN) who worked at County Hospital for 15 years. Even IF the ER Drs tell you there's nothing wrong, INSIST Dad be held over night hooked up to heart monitor. Dad could possibly be right, but a heart attacked/stroke could be very minor so much so, Drs don't catch it.
Sometimes, unless the situation is urgent, its difficult to get anywhere. The NHS is underfunded, overstretched - they just dont have the time for everyone. I've spoken to his GP on many occasions but of course hes not "that bad" so there are more important cases for them.
Not sure about his chest pains thing - even his GP won't attend to his home now when he does this. I know - one day its going to be real. Also, in the uk you can't insist on an overnight stay at hospital - in some cases there is no room. Dad has tried this many times with paramedics, doctors at the clinic in the hospital and they've told him NO.
Problem is if Dad works out that if he ups the stakes to chest pain then he will be able to get anyone running at his beck and call. He would do this.
Yesterdays drama. His legs are painful. So I tried to be calm and reassure him etc. Tried to listen and see what we could do. Asked him what doctor had recommended etc.
GP has given him co-codamol (codeine) and given him something for constipation (because he moaned). Twice they've told him that pretty much is his only option and he can take max dose, and each time hes moaned. I think they gave up in the end.
So I asked him - so how many are you taking a day? Answer - ONE. So how many have GP said? His answer - SIX but I don't like taking them. My friend said they're not good for you.
At this point I'm losing a bit of sympathy as you can imagine. Surely you're pain isn't that bad if you can't even be bothered to follow a doctors advice.
I think of my own wife whos got Fibromyalgia and whos taken co-codamol (and many other drugs) for years because of the pain she gets. Not ideal but she wouldnt be able to cope without.
And, like all opiates, it can be addictive. It should not be prescribed long term without extremely good reason.
But taken correctly it works like a charm on some kinds of pain. What's the matter with your dad's legs?
Yes know about Codeine. Like I said wife (whos a nurse) has taken it for years and there are drawbacks.
BUT as I always tell Dad, I'm not a doctor so its not asking me. I'd hope his doctor would have considered all these things and come up with the recommendation.
He has arthritis and previously has had two knee replacements....
My mom was exactly the same way with her anxiety meds. Wouldn't take them as prescribed.
Getting a cognitive evaluation that showed us that she had the reasoning skills of a 5 year old helped tremendously in the empathy department, especially for my brother, who kept saying "mom is bringing this all on herself". "She's having a pity party". "She likes all the attention she's getting".
Once we got back the results of the neuropsych eval, I never heard him say that again.
To be honest, hes been like this for years and years - ever since I've been an adult (30+ years ago). He gets an idea in his head and wont listen to anyone else.
Other things I've said on this forum bear the same. You can try and convince him that doing x will make things easier for everyone, or doing y will be to his advantage but he will dig his heels in and say no.
He admitted last night that doc told him to take the codeine (he takes warfarin which apparently limits what he can take). Dad said no he didnt want to. Doc said well thats the option I am recommending. Dad said no its your job to sort me out. (Can imagine that went down well!). Doc now refuses to discuss painkillers with him because of this and I can't say I blame them.
So he phone me. What do I suggest he asks. Listen to the doctor would be a start. I've even offered to arrange a private consultation 2nd opinion to discuss pain medications etc. (in the uk you have to pay if you want a private appointment - approx $250). I offered to pay for it.
His answer - no way am I wasting my money or letting you waste money on that.
Brothers girlfriend is ill so hasnt visited - so he got his cousin (3 years younger than him) to go out and buy his food.
I go shopping for him he refuses to spend more than about £20 ($25). His fridge and freezer are 10% full. He could fill both up. I've tried and tried to get to him to agree to home delivery for food just in case.
So I was planning to visit this weekend anyway but I get the "desperate for food", "you'll have to visit", "Im stuck otherwise because I can't get out". Its this "come hell or high water" blackmail that annoys me so much.
What if something comes up, my kids are ill, I'm ill, I get called into work (I do sometimes do on call). I just know with Dad that as far as hes concerned I HAVE to be there this weekend....
Paul, with all of these things, make a conscious choice for yourself - do them or don't do them, but don't do them and resent it on the one hand or refuse to do them and then feel guilty about it on the other.
And again, with all of it - what he's eating, how he's managing his pain and his ailments, even who he's got to moan to and what reception it gets - they'd be managed more efficiently, more constructively and, I have to say though I'm genuinely not blaming you, more sympathetically in a supported living environment. Crack on with it, I should.
I admit I do struggle at times not doing things even when I know hes playing up with me....
Warfarin is an anticoagulant. So is aspirin, and so are all aspirin's descendants - ibuprofen, diclofenac, naproxen, all the NSAIDs. So if your father takes NSAIDs with the warfarin he's at risk of a serious bleed. Hence he's stuck with paracetamol (which I happen to know is not regarded as a painkiller at all in Eastern Europe, as my Romanian dentist told me), codeine or, if things get extreme, tramadol. If he's not taking co-codamol as advised, I'm not surprised he's not being offered anything else.
I must admit that during last night's conversation I wouldn't have lost a bit of sympathy. I would have got in my car, driven over there, and stuffed them down his throat. Sue me. My father used to drive us up the wall like this - he'd be having rigors with 'flu but would he take a couple of aspirin? Would he heck as like. Much sooner howl the house down with how dreadful he felt. He "cured" his swollen knee with a packet of frozen peas, and wrapped a shot in a tea towel to use as a weight for strengthening his quadriceps. It wasn't until their excellent GP managed to get on top of a dose of gout, and he came gambolling down the stairs saying he felt like a spring lamb, that he believed any medicine had value.
You could rehearse: "Dad. I'm sick of this. Take two co-codamol as directed, and the senna before bed. Don't call me again unless you've done that."
You have to say it like you mean it. But you'd be doing him a favour.
The idea behind the 2nd opinion was for someone else to tell him the same thing and it might sink into his thick head. Like I said he asks me what he should do? I say listen to the GP!!!! I don't know - Im an IT consultant. I can tell him about Virtual servers in Solaris but sod all about pain meds ;-)
Yes I know he needs to be told...
I do say no to him a lot more now. Admitedly, some times its easier to just say no I'm working. Probably should just tell him straight.
I guess part of me is coming to terms with the fact that its not me being selfish and heartless towards him. Probably why I post what he does because everyone agrees that his behaviour was not right and that I was right not to fall for it.
But the mistake is to think that you can solve it, just because that's the answer he reaches for the whole time. There are better answers, that will work better for him. Your not going nuts with frustration and overwork is just the icing on the cake. The actual cake is better quality of life for him.
Despite GP telling him to take the senna and take 8 co-codamol. His argument - he doesnt want the Senna to affect him and be "caught short". Can win with him.
Told him I didn't want to hear it because theres nothing I can do if he wont even listen to the GPs advice.
He seems to crave attention though. Unless hes got someone running around in circles for him hes not happy. He likes sitting back and letting someone else do things for him.
Which is why he LOVES being in hospital. He can sit there do nothing, and have nurses etc run around after him all day long.
Hes stopped doing it to me at the moment because I've started to say no. I heard this week hes started getting his cousin (4 years younger than him only) doing errands for him. Mostly unneeded....
Dad told me - X doesnt mind. I spoke to X and hes a nice guy and will help, it is hard work for him at times. But thats Dads MO to a Tee - latch on get someone to do things for him and, in his head, they don't mind.
I could tell you some stories about people who have done favours for Dad, got sucked in, eventually realised that he is taking advantage and then cut him off completely.
He used to go to church every sunday - no-one will give him a lift now. He got so bad that if someone gave him a lift once he'd assume that they could give him a lift every single week and he got quite pushy apparently.
He doesnt go now and moans a lot about it. He could get a taxi/cab but won't spend the money (which he can well afford). Another reason U suspect is that it would involve some effort on his part and not let someone else do it.
If you think he really does want to go to church - as opposed to more enjoys complaining about not being able to get to church - call the minister's office. It is their Christian duty to help him and God will give them extra points for doing it. There'll be a volunteer drivers' rota or something like that.
Paracetamol taken prophylactically is quite effective. If he's taking two of them four-six hours apart three times a day that should keep his pain subdued. If he habitually takes more than that, or if he takes cocodamol on top of it, or if he tends to forget what he's taken when, he could damage his liver fatally in less time than you would think. Since you're not there and he sounds a bit woolly and in any case these fine details are beyond many much younger people, that's another extremely good reason to get him into care.
But paracetamol isnt that strong is it? Not as strong as Co-codamol?
I think hes ok taking tablets. Hes over cautious. Like I said he goes and not takes things that the GP has told him to if one of his friends says something negative!
Paracetamol comes in 500mg tablets, caplets or capsules.
Cocodamol is usually 8mg codeine + 500mg paracetamol.
So if your Dad thinks he hasn't taken his paracetamol, just his codeine - you instantly spot the problem...
Paracetamol is not a very effective painkiller - though it is a reasonably effective pain suppressor, taken regularly. But in overdose it's an astoundingly effective people-killer, and the overdose is not all that much, and the effect is cumulative.
Any A&E doctor will tell you how much he dreads having to tell parents of teenage girls who've "only taken a couple extra" that if the transplant team can't find her a new liver then she's had it.
That is not awful. This is a very real and human feeling, and relatable, at least to me.
Modern society and political correctness seems to have made talking about death stoically to be taboo.
And speaking for myself, even wishing for relief is a scary thing to admit to others because of the risk of your words being misinterpreted to have any malice or selfishness in them.
If your dad is suffering and you wish for his suffering to end, that is loving and merciful.
If your dad is suffering and also a burden to you, and you wish his suffering to end, and your burden would also be lifted, it is still loving and merciful, and also would be a relief to you. Your relief does not negate love and mercy. Don’t feel bad about what you feel.
Even if at some times you catch yourself thinking silently “I can’t wait for this to be over...”, don’t feel guilty because it is a very normal and human feeling.
These may seem like dangerous things to say, because people seem to think the worst nasty things about others and nobody wants to be accused of malice.
Wanting “relief” is not malicious.
Facilitating “relief” would be a whole other ballgame.
I feel for you - I am in a somewhat similar situation, caring for an attention-seeking parent. Don’t feel guilty for having human feelings. Your actions reflect your love and intentions. Not your passing thoughts.
(hug)
Hes getting worse. He phones me now just to tell me how ill he is. I mostly don't believe him - the number of times hes told me how ill he is and I've gone to visit and hes fine is amazing.
I really lost if the other day. He STILL not taking his cocodamol. He takes ONE per day when his doc has advised him to take 8.
The GP has given him Senna to help with the side effects. He wont take that because he doesnt want to be "caught short". Can't win with him.
I've got problems with neck/back and when it flares up I take max dose co-codamol. Some days Im so bad I'm waiting for time to take next dose.
Does make me wonder if he really is in pain or not? I think a lot of it is made up for attention to be honest.
My wife is a nurse and used to work in Theatre Recovery. She said it was a known thing amongst the nurses that people used to moan and moan they were in pain, so they'd offer them a pessary (i.e up the wrong end!). A lot refused because they didnt fancy the idea due to embarrassment, so they'd then know they weren't really in pain. Those who didn't care they'd keep more of an eye on.
If you offered a man a pessary you'd have to rip him a new one. Literally.
Without going into details, I had problems in that area once and had to attend hospital pretty sharpish. Was in mega pain. Had about 15 people looking there with a torch, poking, pulling, all sorts. Doesn't bother me after that !!!
Surprisingly he was very happy when he came back. Surgeon had suggested a wonder drug. Not free on NHS but he'd have to pay - Glucosamine (my heart sank a bit).
Bought him some anyway. Why not? He takes it for a day. Next days hes telling me how good it is and how much better he feels etc. I had to stop myself from saying it doesnt work like that and said yes great Dad....
Good news is hes happy but just proves how much is real with my Dad and whats not. Next drug to try is a cracking one called P-L Acebo I think ;-)
I tell my siblings to go with the flow when it comes to both Mom and our stepfather. Alzheimer's and dementia just changes their reality.....go with the flow.....answer the same question 10 times with 10 different answers.....go with the flow....
So, what was the appointment actually for?
Consultant has told him time and time again that basically thats it - hes 84 and not a lot more can be done. I'm surprised consultant still entertains him because Dad is never happy until he gets the answer he wants (i.e. take this pill and everything is fine)
Last time, consultant told him straight and he was not happy. This time looks like hes been a bit cleverer and told him he take these magic tablets. Its worked anyway!
His refusal to do any of the simple things, like take the pain relief he's been prescribed, is frustrating; but he is not imagining that his knee hurts. It does. It must make him very miserable.
But experts have offered solutions to at least help and he refuses as you say....