FIL won't accept help.

[learning2me]

My FIL was assessed for dementia 3 years ago and was 'borderline'
This year, he was diagnosed with lung cancer and eventually admitted to hospital for intensive radiotherapy.
It was whilst he was in hospital that we realised how bad the dementia had become. He is 85 and was still managing to live alone in a 3 bedroomed house. At least, we thought he was, but he was covering up lots of things when we had a good look at the state of the house. His bed had not been changed in over 2 years, and lots of things were in a bad way.

Since then, we have had a diagnosis of Alzheimers and have put a cleaner and daily carers in place. Initially, after leaving hospital, the carers were 4 times per day, as he couldn't cope with medication, but this has now been reduced to twice.
We took him away on holiday for 2 weeks after his cancer treatment, and it soon became obvious that the main issues are Personal Care and food.

He is not showering or washing, but shaves every day. Doesn't clean his teeth and only changes his clothes, including underwear, weekly.
Although he ate like the proverbial horse whilst away with us, he is losing weight rapidly. If food is put in front of him, he'll eat it, but doesn't seem bothered about feeding himself, although he maintains that he has a good appetite.

Knowing this, we have put in place a carer in the morning, who makes him a cooked breakfast whilst making sure that he showers and gives him meds, and a carer at night to give him his meds and check that he has eaten (he maintains that he is capable of cooking)
My OH takes him shopping.

All of this has been explained to him and he has agreed every step of the way.

Now he has decided that he doesn't need help at all. Says everything has been taken away from him and that he is quite capable of looking after himself.
His immune system is impaired after his radio therapy, so allowing him to be dirty and not eat is not really an option, but we are at a loss as to how to explain things differently so that he will accept the help he needs.

Just wondering if anyone has any advice please?

 

[pippop1]

Blame the Dr

One thing you could say is that the Dr insists that you have this help. You could possibly get the GP to give him a ring and say that if she/he is willing. You could also tell the carers to always give this answer and in the end perhaps he will accept it as true.

 

[learning2me]

One thing you could say is that the Dr insists that you have this help. You could possibly get the GP to give him a ring and say that if she/he is willing. You could also tell the carers to always give this answer and in the end perhaps he will accept it as true.

That may work - if he can remember what has been said.

I think part of the problem is money. He has plenty, but is naturally careful. WE have applied for AA but only been awarded the lower rate, and I am currently applying for a rebate on council tax. So all his help will only cost him around £25 per week,
BUT he can't understand all that, and thinks we are spending all his money!

 

[ITBookworm]

Would FIL accept that "if the doctor says he needs the help" the care doesn't actually cost anything? As long as you handle the bills so he doesn't see them....

Another option might be to say "as soon as you get to age x care like this is free" or "heavily reduced so a bargain"

It all depend how much he still understands about money though particularly if he sees the bank statements. Worth a try though.

 

[learning2me]

Would FIL accept that "if the doctor says he needs the help" the care doesn't actually cost anything? As long as you handle the bills so he doesn't see them....

Another option might be to say "as soon as you get to age x care like this is free" or "heavily reduced so a bargain"

It all depend how much he still understands about money though particularly if he sees the bank statements. Worth a try though.

We have POA but he does see the bank statements unfortunately, so may or may not work.

We are now at our wit's end. OH has been to see his dad today and the carers have recorded that he is 'aggressively refusing care'
He is unwashed and smelly.

Took him to visit a day centre which he had agreed would be a good idea. Made all the right noises while there, but after leaving said forcefully that he wasn't interested.

In some ways I think that it will be easier when he actually gets worse and is more compliant. Does that make me seem like a bad person?

 

[pippop1]

Poa

We tell MIL that her care is covered by the AA which has to be used for such things or they don't let you have it.

We also had her post diverted to our house (just as you do when you move) as we were missing bills or appointments and running into problems. Husband is POA on her bank account and so we didn't want her to see that on any letters or statements.

It's much easier than explaining to each organisation why you need them to change the contact address on everything. They either a) don't do it, b) don't understand what you are talking about c) ask for the original (not a copy) of the POA plus husband's ID to be brought in or sent a copy certified by a lawyer which they retain and so on.

The Post Office have a nice form that you can divert the post with. It's about £60 per year and you can even have it diverted from one country to another (e.g UK to Australia) for not that much more. Also ensures that any scary letters that she might get don't get seen by her.

 

[Nick99]

We also have all bills and statements diverted to our house but we have used our enduring POA to do this. If you use the post office redirection then they will inform your FIL that his post is being diverted. This may or not be a problem for you. My FIL lives alone about 150 miles away.

My FIL does not change his clothes at all and we insist he changes and we do his washing when we go and see him, about every 4/5 weeks. We also change his sheets and clean the house as he will not allow carers to do this. He does not know if he has eaten or not but the meals on wheels lady will phone us if he does not eat his dinner. He seems to take his meds as he is prompted by the carers who make his tea and do his weekly shop, but we find loads of tablets on the floor, in his pockets and by his bed.

People with this condition are prone to changing their mind constantly, so if ever agrees to have carers back you may find he changes his mind again. I'm afraid that you can no longer treat your FIL as a reasonable person, he has lost the ability to act in a sensible rational way. I know, like all of us, you will continue to try and persuade and reason with him over those things you think are in his best interests. My advice is to take over control of as much as possible, bank accounts, paying bills, bank card, etc.

People with the condition do not like to be challenged in any way and if you do it can lead to aggression as they cannot reason properly. it's very difficult and I think you can look forward to some difficult times ahead. This forum is a good place to find help and advice but essentially each family is on its own, the professional services do not seem to be of much help.

I agree that he may need to get a lot worse before you are able to help. Lots of people on the forum will tell you the battles they have had over money, it seems it's one of the last things they let go of, even when they have no idea what they have or what it is spent on. My FIL insists, even to the extent of shouting at us down the phone, that he must have money, although he is housebound and not been out for three years, all bills are on DD.

 

[pippop1]

POA and Post Office

We did use the POA to divert the post. Sadly she hasn't noticed and it's been nearly a year now.

 

[learning2me]

We also have all bills and statements diverted to our house but we have used our enduring POA to do this. If you use the post office redirection then they will inform your FIL that his post is being diverted. This may or not be a problem for you. My FIL lives alone about 150 miles away.

My FIL does not change his clothes at all and we insist he changes and we do his washing when we go and see him, about every 4/5 weeks. We also change his sheets and clean the house as he will not allow carers to do this. He does not know if he has eaten or not but the meals on wheels lady will phone us if he does not eat his dinner. He seems to take his meds as he is prompted by the carers who make his tea and do his weekly shop, but we find loads of tablets on the floor, in his pockets and by his bed.



People with this condition are prone to changing their mind constantly, so if ever agrees to have carers back you may find he changes his mind again. I'm afraid that you can no longer treat your FIL as a reasonable person, he has lost the ability to act in a sensible rational way. I know, like all of us, you will continue to try and persuade and reason with him over those things you think are in his best interests. My advice is to take over control of as much as possible, bank accounts, paying bills, bank card, etc.

People with the condition do not like to be challenged in any way and if you do it can lead to aggression as they cannot reason properly. it's very difficult and I think you can look forward to some difficult times ahead. This forum is a good place to find help and advice but essentially each family is on its own, the professional services do not seem to be of much help.

I agree that he may need to get a lot worse before you are able to help. Lots of people on the forum will tell you the battles they have had over money, it seems it's one of the last things they let go of, even when they have no idea what they have or what it is spent on. My FIL insists, even to the extent of shouting at us down the phone, that he must have money, although he is housebound and not been out for three years, all bills are on DD.

Sadly, I think you're right.
We do try to reason and explain, even when we know that they cannot understand or remember.

It really hurts to see him smelly and dirty. When he was in hospital and later when we took him on holiday, we put a lot of time and effort into getting him clean and spot free, and establishing a routine.
We used over 60 man hours cleaning his house, then had to get professionals in to do the carpets and cooker.
Without help and support it will all revert back, and with his compromised immune system, that could be dangerous.

I have never seen FIL as aggressive, so I suppose that it's the Alzheimers, but even the carers are having a problem, We have a meeting with his SW to review the package next Friday, but the problem is that he says all the right things when the professionals are there, but changes his mind when they leavee, so I'm not holding my breath!

 

[carpe diem]

Hi I had the same problem.
You could phone around the care agencies and ask them if they are willing to be very persuasive. Then just arrange them to visit. See if he lets them in.
Maybe also have paper free online statements.
Good luck

 

[learning2me]

Hi I had the same problem.
You could phone around the care agencies and ask them if they are willing to be very persuasive. Then just arrange them to visit. See if he lets them in.
Maybe also have paper free online statements.
Good luck

Would love to be able to phone around the care agencies, but the care package has all been arranged by the SW who works for the local council.

To be fair, she is very good and has spent hours explaining things to FIL and getting his agreement. Will see how good she is next Friday I suppose.

 

[zeeeb]

I haven't read all the responses, but my initial thought would be to tell him that he needs to accept the carers, or the social workers will end up forcing him into a nursing home, so he needs to choose between the carers, and moving into a nursing home.

Perhaps it's also time to re-route the bank statements to your house, he doesn't need to see them, surely. It's hard to take this independence away from someone, but harder to put them in a nursing home where they have even less independence and freedom.

 

[learning2me]

I haven't read all the responses, but my initial thought would be to tell him that he needs to accept the carers, or the social workers will end up forcing him into a nursing home, so he needs to choose between the carers, and moving into a nursing home.

Perhaps it's also time to re-route the bank statements to your house, he doesn't need to see them, surely. It's hard to take this independence away from someone, but harder to put them in a nursing home where they have even less independence and freedom.

Can SWs actually force him to go into care?

 

[ITBookworm]

I think the correct answer to that is "sort of"... things would have to be at the point where FIL was a danger to himself or others with no understanding of the risks or the situation. That is the point where either a welfare LPA or, in the absence of someone with the LPA, a SW can overrule his wishes to stay at home. Accepting carers would extend the time till that point is reached.

I can't imagine that FIL will understand the details of the rules so it isn't entirely false to say that the SW can force him into a home if it will help him accept carers at the moment.

Good luck!!!!!! (I had the same problem with my FIL and he was living on marmalade sandwiches and tea before he went into a home. He accepted someone to give him his pills but absolutely nothing else - thankfully he didn't smell even though he wasn't washing or changing his clothes.)

 

[learning2me]

I think the correct answer to that is "sort of"... things would have to be at the point where FIL was a danger to himself or others with no understanding of the risks or the situation. That is the point where either a welfare LPA or, in the absence of someone with the LPA, a SW can overrule his wishes to stay at home. Accepting carers would extend the time till that point is reached.

I can't imagine that FIL will understand the details of the rules so it isn't entirely false to say that the SW can force him into a home if it will help him accept carers at the moment.

Good luck!!!!!! (I had the same problem with my FIL and he was living on marmalade sandwiches and tea before he went into a home. He accepted someone to give him his pills but absolutely nothing else - thankfully he didn't smell even though he wasn't washing or changing his clothes.)

Thanks - you could be right. If we explain it that way it may sink in.
One thought we've had is that he accepts his cleaner, who comes twice a week. Perhaps if she prompted him, he may shower on those days, which is better than nothing!

 

[Cathf0974]

Did you fill in the AA yourself? We did and got turned down. We contacted Age Uk who came and filled the form in for us and it was accepted for the higher amount. It's a free service - sorry if I'm teaching you to suck eggs.

 

[learning2me]

Did you fill in the AA yourself? We did and got turned down. We contacted Age Uk who came and filled the form in for us and it was accepted for the higher amount. It's a free service - sorry if I'm teaching you to suck eggs.

I did fill in the form myself, with advice from GP and Consultant,
I was surprised at getting the lower rate, especially with the dual diagnosis of lung cancer and Alzheimers.

I wonder if it's worth challenging the decision or wait until the review period? Can't remember how long that is offhand.

 

[FifiMo]

I think you need to be the ones who take the actions now in order to compensate in those areas where he is no longer capable of making reasoned decisions. Oh, and practice the little white lies in areas that cause him distress.

I would divert his mail so you can manage finances etc. little white lie nr 1 ... The care is FREE if you are over 80.

I would install a key safe in case he tries to stop entry to anyone.

I would be blunt. No long explanations. The choice is help at home or hospital. What do you want?

I would stop referring to carers. Tell him they have been cancelled and meals on wheels and extra cleaning is now introduced. I would get meals on wheels in place if he eats if presented with food. It also serves as a midday check that all is ok without him realising.

I would pick my battles by offering simple choices. Bath or shower. No nothing option. Check if part of problem is he has forgotten how to work the shower etc. don't forget either that if his memory has regressed that he might be back in the day where personal care was a strip wash and a tin bath once a week. Baby wipes can help for a quick lick if nothing else, maybe wiping hands and face before/after a meal.

Food..check and make note of what is not being touched and what is. Tastes change with dementia. Does he now have a sweet tooth? Meals on wheels can provide the nutrition, the shopping trip can be for the top ups that will be used.

Aggression can be a development of the dementia so consider if medication might need to be introduced.

Contact the SW before the visit and tell them what outcome YOU need to achieve next week and tell them what will NOT work no matter how bright or smart the gentleman may be on the day.

Fiona

 

[Cathf0974]

We just rang Age uk and explained we had been turned down. The ordered a new form for us and one of their trained volunteers came out and filled it in with us. They explained that you only have to word something in a particular way and you will get turned down. We did not have to wait any particular time until we could reapply