To ignore the phone tomorrow

[Colouringaddict]

My DF has been in hospital for 6 weeks after suffering a stroke. The stroke mainly affected his speech, his limbs are fine but he has chosen to be bed bound.

He has refused speech therapy, physiotherapist, occupational therapy and his medications.

We had a meeting last Weds with his Consultant, who was very blunt, telling us his limbs are good and strong but he is choosing to stay in bed. He is now wearing pads because he refuses to get up to use the bathroom.

He has stage 4 kidney failure, heart failure among other co morbidity conditions. We were told the best place for end of life care would be a nursing home, which we (myself and DSis) agreed to. We were told he would be assessed there and then we would be told which homes would suit his needs and we could go and look at them, choose a couple, and the management from these homes read the assessments and decide if they can take him. He said it was a long process.

On Friday DSis got to his bedside to find 4 members of staff surrounding his bed trying to do a COVID test, he was refusing. She asked what was going on, to be told he has to have this test or he can’t go anywhere. As we weren’t expecting him to be going anywhere, she asked if that was necessary, and was told yes as he was going to a nursing home that afternoon!

After a flurry of phone calls, I found the name of the home he was going to, and made an appointment there and then to go and see it.

It is clean and modern, freshly decorated with only a small number of clients there. Also by sheer fluke got to speak to another residents relative who was really impressed with the care.

I agreed to his going, filled in lots of paperwork, allergies, likes, dislikes, hobbies etc. Had a good chat with the nursing sister and the manager.

In the meantime DSis had talked him into doing to COVID test himself with supervision. Transport was delayed but rebooked for Saturday.

Saturday morning, I am woken by the hospital calling me, he is still refusing to be tested could I go and try.
After sitting in traffic for an hour and a half I got to him, asked him, he refused, begged him, he refused, argued and he refused. He is not going and is staying in hospital according to him.
I tried to show him the video and photos I had taken of the home, he refused, because he’s not going. He got very verbally aggressive, pulled his blanket up over his head, pretended to be asleep (a technique that has worked very well for him over the last 6 weeks).

After 2 hours I admitted defeat. His sister went to see him yesterday to try, same result.

My DSis went to visit today, didn’t force the issue, but when the opportunity arose she mentioned it again. He hasn’t had a wash today, but he’s not bothered, he is now refusing to let them take blood, or do the regular observations. He has been warned he will be moved from there tomorrow, whether he agrees or not. He has only really got to stay because it is a bank holiday here and they’re quite short staffed.

I assume that they will be calling me in the morning, when he becomes difficult, but my presence will not change that, the same applies with my DSis, in fact he’s even less likely to listen to her than me.

Anyone else been in this position? My aunt works at a care home and has had residents delivered restrained in a wheel chair, I hate that thought, but the nursing home really is the best place for him. He only has a maximum of 6 months to live. Neither of us are in the position of being able to care for him in his own home. We have no access to his money to pay for care privately.

I’m stuck, but worried about him.

I think the best thing for him, and you, is to ignore the call.
Then visit him when he's settled.

He may be having some mental distress issues and you don't want to get caught in the middle xx

What does he want?

I’m sorry you’re going through this OP.
In your position I’d ignore the phone and let the authorities deal with it. Once at the home, hopefully things will be more settled.

@JayAlfredPrufrock

What does he want?

To stay in hospital, where they do everything for him. He gave himself away on Saturday, because he actually rose like Lazarus from his bed and walked!

I agree. Don't answer the calls as they may want you to come and take him if he refuses to go to the nursing home. Or answer and say you are simply not available to assist any further. They will no doubt have dealt with patients like this before and will no doubt sort it so I'd leave it to the professionals.

I would probably answer and just tell them you can't help. Don't be dragged into a conversation about it. Once they have him moved then you can visit him. Probably best if your sister does the same.

Sorry you are going through this, it sounds awful.

I think you need to ignore the phone and try and let the hospital work it out. Neither you nor his other family are having any effect on getting him to go. They can't just leave him blocking a bed in hospital. They will need to work out a way of getting him to move to allow him to get the correct care he needs.

Oh, what a difficult situation. I’d answer the phone if it was me, but only because if they left a message, I’d feel like I have to call them back, and that would stress me out.
I’d answer and tell them you can’t go, have an appointment, anything, but I definitely wouldn’t go. He’s in their care, let them sort him out. If they are unable to get a CV19 swab from him, they are likely to treat him as positive, and isolate him on admission to the nursing home. It will depend on who has the biggest say on the day, the hospital bed manager, or the care home manager.
I hope it’s a smooth transition, for all your sakes.

So difficult for you.

Oh dear this is so hard. Clearly you can't help by going in. Can they take him to the home without a covid test if he still refuses?

If you aren’t comfortable answering and feel you might be pushed into something you don’t want to do then don’t answer the phone.

If you feel confident enough to say you can’t help, sorry. Then just do that.

Could you speak to the doctor in charge of your father's care in the hospital, or a member of their team, to say you are not contactable tomorrow? Outline briefly what you've said above, that you feel it's in your Dad's best interests that he is moved as swiftly and smoothly as possible, whilst acknowledging the fact that you and your family are aware will be a difficult process. Maybe state you're in agreement with them that care home placement is needed in his circumstances?

Personally I'd also say that I'd liase with care home upon his arrival at home when you are available. Hopefully by speaking to the manager and carers at that end your energies might be better spent?

Just a thought going forward, have you thought about lasting power of attorney for health and welfare? It may be worth looking into, to help you and your sister have a say in the care of your father... If he agrees of course.

Good luck, if just be very hard.

My Nan had dementia, the only way they could transfer her to the nursing home was by sedating her she was so violent. I would leave it up to the hospital now to do what’s in his best interest. You just carryon visiting but make it clear you don’t want to care for him.

... It must be very hard...

That's a tough situation. I would answer the phone tomorrow but say you're out of the area all week - true for many people because it's half term. That will more likely allow them to make a decision and act on it.

I would answer the phone, but say you are unable to come in if they ask. They must be used to patients like your father. My own father in law really seemed to enjoy being in hospital, where they all fussed over him.

@Glassesareneeded

Could you speak to the doctor in charge of your father's care in the hospital, or a member of their team, to say you are not contactable tomorrow? Outline briefly what you've said above, that you feel it's in your Dad's best interests that he is moved as swiftly and smoothly as possible, whilst acknowledging the fact that you and your family are aware will be a difficult process. Maybe state you're in agreement with them that care home placement is needed in his circumstances?

Personally I'd also say that I'd liase with care home upon his arrival at home when you are available. Hopefully by speaking to the manager and carers at that end your energies might be better spent?

Just a thought going forward, have you thought about lasting power of attorney for health and welfare? It may be worth looking into, to help you and your sister have a say in the care of your father... If he agrees of course.

Good luck, if just be very hard.

They have been unable to assess him because he has not engaged with anyone, so they have had to record him him as not having mental capacity, so we are too late for POA. As his eldest child, they consider me to be his next of kin, in reality both my DSis and I and very much a team and consult each other before any decision is made. We looked into applying for deputyship, but it is unlikely to be awarded in time.

That's so hard, I'm so sorry. I'd definitely let the hospital know you're not available tomorrow, so you're not worrying about answering the phone, and then try to conserve your energy. Leave the professionals to it, that is in the best interests of your Dad, and allows you to catch a breathe. It must be very difficult. I am also the eldest child, and my siblings and I dealt with issues in the same way. Conserve your strength and don't get drawn in to the hospital discharge.

Take care, and wishing you all the best. Its such a hard time.

YANBU OP but you need to be prepared to be firm for some time. I had a similar situation which was only resolved once I started putting the phone down on social workers It really wasn't their fault, they are told to bully relatives into helping, but I just couldn't deal with the constant requests, guilt tripping and having to say NO!!

If they ring answer, make it clear you agree that the nursing home is the best place for him, but say you don't feel your presence will be conducive for getting him there.

Most likely OP they will call security if he refuses, security will ask him to get into the chair to be transferred, if he still refuses they will firmly help him. I've been the nurse in this position and can say out of hundreds of similar cases I can only think of a very small handful where security have had to 'help' someone into a chair and that's been patients with severe dementia. When security turn up and they know they're serious he's very likely to just transfer himself.

Could you be waiting at the nursing home for him? Or drop him some personal items off so it feels more homely when he gets there, has he a particular chair he likes to sit in, or even his own pillows and bedding from home. It might help alleviate some of your stress too to be getting on with getting where he's going ready.

@EverdeRose

If they ring answer, make it clear you agree that the nursing home is the best place for him, but say you don't feel your presence will be conducive for getting him there.

Most likely OP they will call security if he refuses, security will ask him to get into the chair to be transferred, if he still refuses they will firmly help him. I've been the nurse in this position and can say out of hundreds of similar cases I can only think of a very small handful where security have had to 'help' someone into a chair and that's been patients with severe dementia. When security turn up and they know they're serious he's very likely to just transfer himself.

Could you be waiting at the nursing home for him? Or drop him some personal items off so it feels more homely when he gets there, has he a particular chair he likes to sit in, or even his own pillows and bedding from home. It might help alleviate some of your stress too to be getting on with getting where he's going ready.

We have all of his framed photos, some clothes etc all ready to go to him, but until he is there, we were asked to keep it with us.

Mainly we are worried that he will lose this bed and end up somewhere else that we haven’t seen, we feel really rushed into this

It does seem very rushed, are your trust in a covid hotspot and anticipating a wave?
Certainly I've never sent a patient to a home without the lengthy process of shortlisting, viewing etc.

If they've deemed your dad to no longer have capacity, the decision for him to move is no longer his, so in theory if you've agreed it's up to them to instigate a plan to get him there, likely using security or a sedative. This is much more likely to happen when his own doctors return tomorrow and there's more staff on in general. One of the reasons I'd advise you to answer the phone is that as next of kin if he refuses its you they'll come to for the go ahead, just be firm with them and refuse to go in.

I've my fingers crossed it all goes well tomorrow for your dad and he settles in quickly.

Thank you so much for your help. I suppose it all depends on whether the home will take him without a COVID test.

We were told it is because this is end of life care that this all was rushed

Diagnosing someone as having no capacity is quite a serious thing and to take away someone's ability to decide on their own care because they're refusing to engage seems extreme.
I'd be inclined to confirm the grounds in which they've decided this?
Sounds more like your dad is struggling to deal with his diagnosis and prognosis rather than having no mental capacity.
Have they done a full mental health assessment? And has he been offered to speak to a counsellor when he was first diagnosed and told his prognosis? - this is usually offered when drs give this kind of information to patients, and usually a family member is present when this information is given in hospital as to get that news alone can be understandably quite daunting.
As a nurse I'm confused with this, is there something else that has made the drs come to this decision?

Hopefully the nursing home will still accept him, as unfortunately they can suddenly find 'excuses' not to accept patients when they hear that they can be awkward.
Also an idea to keep in mind that hospitals can issue final warning letters is patients are refusing to leave the hospital when they are medically fit for discharge (no longer needing specialist the care provided by hospital). And if they don't have capacity they're usually sent to next of kin. - which can be more stressful for yourself to deal with.

Sending lots of love to you as it's a hard situation to be in without all the unnecessary added stress

I have a lot of professional experience in this area. Firstly, you have to rely on the care home manager (or care home group's policy) regarding whether or not they'll take him without a covid test. They are putting all their other residents and staff at risk by taking him so, regardless of the hospital's policy regarding medically fit patients who are refusing to leave, if there's no where safe for them to go, it's their (the hospital's) responsibility to fix a safe discharge somehow. If they assess him as having capacity, they can start serving him with letters that put pressure on. They may send these to you but next of kin means nothing legally and you have no legal responsibility for him. They can't try to make you take him home or to come in to make him comply. If you don't feel strong enough to stand your ground, then I think you're right to not answer the phone to them. Acute hospitals are not the right place to be for medially fit people and carry a high risk. But he sounds like his psychological response to your stroke needs more support from them. It might be worth you putting the pressure on with that - what has their specialist clinical psychologist done to support his recovery? Stroke teams are normally very good, but I am sure some people slip through the net. If you don't have the mental space to be involved now, you can just leave it to them - the hospital and care home can work it out between themselves. Your poor Dad, though. It must be awful to be in that situation - I guess it's the only thing he feels he can control in a situation he must feel frustrated and angry and scared about. I hope he can manage to come through that grief and find some quality of life eventually. But look after yourself!