Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ignore the phone tomorrow

68 replies

Colouringaddict · 31/05/2021 16:00

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.

OP posts:
SpeedRunParent · 04/06/2021 15:54

Whatever frustration, guilt or helplessness you might feel at the moment, just know that you are doing your best in a hideously difficult situation. Well done, keep your chin up.

Colouringaddict · 04/06/2021 17:26

Thankyou for all of your lovely supportive comments. OT came and did the assessment, because his home already has a disabled height toilet and a wet room, it makes his home more suitable for him. They are lending us some rails for around his toilet, and a bed. We have to buy bedding because it doesn’t take fitted sheets. They don’t provide cantilever tables anymore either so we will need those.

These will be delivered on Tuesday PM and hopefully he will arrive on Weds along with a carer. I am feeling quite positive about it, because it is what he wants. Now we just have to hope that he can resist swearing very very clearly 😂

OP posts:
HoboSexualOnslow · 04/06/2021 18:33

@Colouringaddict

Thankyou for all of your lovely supportive comments. OT came and did the assessment, because his home already has a disabled height toilet and a wet room, it makes his home more suitable for him. They are lending us some rails for around his toilet, and a bed. We have to buy bedding because it doesn’t take fitted sheets. They don’t provide cantilever tables anymore either so we will need those.

These will be delivered on Tuesday PM and hopefully he will arrive on Weds along with a carer. I am feeling quite positive about it, because it is what he wants. Now we just have to hope that he can resist swearing very very clearly 😂

Good news! Please take any support offered, the next few weeks are going to be tough OP. All the best
Colouringaddict · 04/06/2021 20:11

I know it will take some settling, my main concern is the carer that has been appointed is a non driver. He doesn’t live on a bus route and has never done online shopping before, but we have to try it and see. She is braver than me!

OP posts:
Its90minutestonight · 05/06/2021 07:03

Oh god, that doesn't sound good. Think you may be expected to have a lot of input OP.

Looubylou · 05/06/2021 09:50

It's a bit worrying to think he has been labelled as not having menral capacity, because he made a clear decision not to engage in assessment! In his case his behaviour seems to have resulted in what he wanted luckily. For others, this presumed lack of capacity, could have had very worrying and frankly illegal consequences forced o them

epsilonzetaeta · 05/06/2021 11:53

I had this too with my lovely mum she had end stage kidney failure but also other health complications including cancer. My mum went through all of this and found it very difficult to accept that she was dying. She had been such a fighter and had overcome many difficulties in her life. She also said hurtful things and her behaviour was difficult but this was her fear, anxiety, response to the pain of cancer as well as the toxin build-up from kidney failure. It hurt at the time but now 14 years on I just feel incredibly sad and miss the feisty, loving mother that she was.

It sounds as though your father is fading fast. The one plus side, if there is ever a plus about dying, is that end stage kidney failure can lead to a peaceful gentle death. The person sleeps a lot and eventually becomes difficult to rouse. It may be that any arrangements that will be made for your father's discharge will be short term . If his end of life care is at home you could also contact the local hospice to see if they can help when the time is right. There might also be hospice at home option where you live.

I feel for you and your family. Sending you all good wishes.

Flowers
Colouringaddict · 05/06/2021 12:34

@Looubylou

It's a bit worrying to think he has been labelled as not having menral capacity, because he made a clear decision not to engage in assessment! In his case his behaviour seems to have resulted in what he wanted luckily. For others, this presumed lack of capacity, could have had very worrying and frankly illegal consequences forced o them
They had taken legal advice from NHS England, because they were concerned that “anything they did would result in headlines!” Many of the therapies that they tried to introduce, especially the speech therapy, appeared to be aimed at children. He is a very intelligent man, the minute she asked him “where is the red square?” He declared he is not 5, not deaf, not interested. He does get muddled and his very short term memory is affected, but in his own home we can go and visit and have a chat with him, he can see his grandchildren and great grandchildren. They won’t question his speech, they will just accept him. One especially has a very special bond with him, she will be the best medicine.

To be fair to Dad, he didn’t have a plan B, but he didn’t want Plan A, which was a care home.

Luckily for him, he has 2 daughters who will go into battle for him. The whole system needs to be looked at. I think it is in humane to arrange a care home and have little or no notice to see it. As their family, we know him best. The nursing home was lovely, but he would have isolated himself and possibly died faster.

I have read the CQC reports on the Care company that have been employed and both of us will be watching to see how this pans out.

He is one of the lucky ones, not everyone has family like us

OP posts:
GooseberryJam · 05/06/2021 13:55

@Goodmorninglights

Oh my, you really do have a lot in your plate. I hope very much that some positive steps are made. I wanted to post and let you know that the six week care funding is due to COVID legislation brought in last September. In a nutshell I understand it to be for those that have a change in care needs after a hospital stay. In my recent experience it wasn’t shared with us following an elderly relative’s hospital stay so it really is worth mentioning. Good luck.
@Goodmorninglights glad the funding has helped you too - it's not a result of Covid, though. This funding has been in place for several years, as it was given for both my mum and for another loved one, who both died several years ago, before the pandemic. I totally agree that it should be more widely advertised - I would also not want anyone to think it'll only be available while Covid is a major thing.

OP, I'm confused about the bus route thing. You said earlier that this would be live in care, so is the person moving into your dad's place? Or did you just mean as in they're coming to where he lives?

Many carers don't drive or have a car. It's not the best paid job. My Dad's regular social services carer walked between appointments. I would think about whether you or your sister could take on the online shopping though - it's the easiest thing to do without being physically present, and means you are in charge of payments and card details.

Colouringaddict · 06/06/2021 00:37

According to their website, the carer can take him food shopping in person rather than online, his GP isn’t within walking distance either, although I think I will be contacting the GP to let them know he is housebound.

I am happy to take him/them wherever they need to go.

The carer will only get 2 hours off duty a day, strikes me as criminal, so I may offer to sit with him if she wants to go for a walk or meet friends. I think we have to see her as a worker rather than a guest

OP posts:
Zzelda · 07/06/2021 00:19

I hope they've appointed more than one carer? I can't see how it's reasonably workable otherwise.

Colouringaddict · 10/06/2021 15:35

I thought I would come back to update everyone.

Dad came home yesterday, his carer arrived before we did, which gave us the chance to show him around, how to work the washing machine, dishwasher etc.

It is one carer, they live in, they have a 2 hour break during the day when it is safe for them to do so. However there are 2 extra carer’s that go in the morning and 1 in the evening. Hospital had stated that Dad was bed bound and incontinent, and he is neither of those things. So the live in carer has put the other carers on hold for now, we all realise that towards the end of Dad’s life he will need more care.

The Carer has called me this morning to give me an update, mainly because he saw our anxiety on leaving yesterday. They share many common interests, so they have played music this morning, which they both enjoyed. I know what he has eaten, which although not a healthy choice, I know my dad would have chosen immediately on seeing them.

All of the discharge information states palliative/end of life care, so funding will likely continue to be from NHS.

Dad is happy, if overwhelmed to be home. The carer has an aura of calmness and endless patience, which he is going to need in spades!

Today I feel that the right decision has been made, but I am very aware that this is honeymoon period.

I finally broke down this morning, probably from relief and at last being able to stand still and just relax. My DH will be very happy to come home to his own home and not have to speed eat a take away late at night!

Thankyou all again for your wonderfully supportive comments.

OP posts:
GooseberryJam · 10/06/2021 16:10

That's really good to hear, OP. Some of my dad's carers were just wonderful with him and I'm glad yours is being so good.
I wouldn't worry about the non-healthy eating - someone in your Dad's position might as well have what he enjoys.

Starlight86 · 10/06/2021 16:22

Ive followed this thread and think its a lovely update, well done you x

Colouringaddict · 11/06/2021 02:44

Thankyou, this post has really been a massive support

OP posts:
toconclude · 11/06/2021 08:30

@Its90minutestonight

I think by live in carer, they mean you and your DSis OP, I'm afraid.
No they don't
twinklystar23 · 11/06/2021 08:56

If they have assessed him as lacking capacity (though he sounds like he knows exactly what hes doing!) He would be entitled to an independent advocate. I would take the call and ask them about this. Advocates work with clients to establish their views wishes and feelings and uphold their rights, being independent and on his side may do the trick and at least take the pressure off you.

Zzelda · 11/06/2021 09:00

@twinklystar, matters have moved on a lot from the original post, and the issue of whether to take the call simply doesn't arise any more.

New posts on this thread. Refresh page
Swipe left for the next trending thread