Dilemma and decision time

[FOXLEW]

Dilemma and maybe a big decision time

Dad 94 very deaf, registered partially sighted, admitted to AAU after a blockage and passing lots of blood. The urologist has fitted him with a catheter which looks as if it’s permanent

He lives alone but I live 2minutes away he’s had three falls in the last six months I get called by the call care line to deal with it

He has basic Carers three times a day

My dilemma is the whole family have a holiday we all go away on Friday I am now panicking as I cannot deal with a catheter Dad cannot see it to be able to do anything about emptying it

Can I request he isn’t sent home until I return from holiday or can I ask them to put him in to respite

I really really need this break away with all my family we have had three all nighters in hospital chairs with him in the past six months me my son and my daughter and husband and we thought now he had Carers coming in it might be safe for us to have this much needed holiday

I feel I’m being selfish now not wanting to cancel it

I am also now worried he loves where he lives, but am I going to have to move him to an actual care home permanently

My brain hurts and sleep escapes me I am 64 years old but I feel I’m 100 at the moment

[sassy59]

Hello Foxlew, I’m on holiday in Somerset but just felt l had to reply to you. Guilt is a terrible thing, a ruiner of lives but I can understand how you must feel.

Respite care sounds like a good idea to me or a care package that will take care of the catheter and all that entails.

Please go on your break with your family and enjoy yourself. Don’t be burdened by guilt. Things may well be clearer upon your return.

Wishing you well. Take care xxxx

[FOXLEW in reply to sassy59]

Thank you so much I think lack of sleep makes everything seem 10 times worse than it is

[Hidden]

Speak to your dad's care team or his social worker as well as the doctor's at the hospital. If they cannot keep him in hospital while you are away, he can easily go into a nursing home for respite for those weeks. My mother is in a local nursing home and many of the residents are just there to give their families a break. Some of them go in two or three times a year for a couple of weeks, families need time together too, Don't feel guilty, he will be well looked after and you will come back refreshed and much more able to cope.

[FOXLEW in reply to Hidden]

Thank you so much

[kernowdame]

Given the problems your Dad has and that he lives alone I think you should talk immediately with his hospital team. Certainly he should not be discharged without a full care scheme of which you should have a written copy if you are officially his next of kin. If you run into problems contact the PALS team.

[FOXLEW]

Thank you he does have a care package but it’s three times a day and he is having a permanent catheter his carer can empty it but he also has to have it changed once a week

So I have rang the doctor to get a respite in place while we are away and then when we come back we can sort out how he is going to be managed at home

I think it will be an all day at the hospital too

I feel a little bit more positive now

[Oshgosh in reply to FOXLEW]

Pleased that you have managed to sort something out.enjoy your holidays

[Hidden]

Hi FOXLEW,

How really distressing for you and I feel for you with regard to your worry over your dad and your upcoming holiday.

I'd honestly suggest you are sparing with the truth and just say you can't have him home without proper support in place as you won't be there for the next however many days or weeks. Don't give out information that you don't have to. It's not anyone's business but your own, why you'll be away. Don't ask for respite or anything else. Just say you aren't available until the date when you are back. Your dad will be as OK in the care of others as he would be with you.

You aren't being selfish in the slightest. This is a planned break and I'm sure you absolutely need it. Others will, if they must, look after your dad whilst you are gone, and you aren't abandoning him, just taking a break you sorely need.

With very best wishes.

[FOXLEW in reply to Hidden]

Spoke to soon GP phoned they won’t arrange any respite for me . I called the nurse and she spoke to the GP nurse and they were discussing it and said he has Carer’s coming three times a day so they won’t arrange respite I need to contact Social services to arrange and it won’t be done before my holiday

I am broke I cried and said I’ve looked after him for 30 years he keeps falling and he only calls me and I am waiting hours and hours for help

The nurse is now going to try and arrange something via the hospital she’s going to recontact the doctor

I am going to dig my heels in this time social services were awful just to get him carers never mind any extra help or respite

It’s as if I am not entitled to any help and it’s tough get on with it

[Hidden in reply to FOXLEW]

Hi FOXLEW, Yes, do stick to your guns and don't be browbeaten into giving up your holiday. Of course everyone will try to guilt trip you into hovering in the background to back up your dad's three visits a day. If anyone has to endure any guilt let it be your GP for not listening to you. Let the nurse handle this now and continue to reiterate that you will be away and your dad's care is over to his care team, for the duration. While you are away your dad won't be able to phone you, but sooner or later he will ring someone. So continue planning for your holiday. Don't back down.

[FOXLEW in reply to Hidden]

My Dad is furious with me not going to respite wants to go home

He said nobody is making him feel comfortable I said do you mean me he said if the bloody cap fits you wear it sorry I can’t die to order

I walked out I’m done and completely broken

However I am now I. The car with my husband and him taking him home my daughter following

I am furious and I cannot speak to him the nurses told me I had to be firm with him and leave everything to the carers so this journey home is fabulous heartbroken and furious

[Lynd]

Hi Foxlew

My Husband has a catheter and until recently we were emptying the bags all the time. However he had an incident when the catheter came out and up at A and E they said did he want to try one without a bag. He now has a catheter that works like this

Feel the urge to urinate.... Simply flick a lever on a shortish tube. Finish urinating. Flick the lever back.

I was really worried about it at first but so far so good.

Could your Dad have this maybe?

[FOXLEW]

Thank you for your reply Dad has decided he is going home they discharged him because he is of sane mind he is adamant he is not going into any respite even if it is arranged

He’s told my daughter he’s very angry that we are going to Cornwall and he wanted to come

They have already fitted a permanent catheter

They told me I have to be firm with him he needs to contact his carers not me

I am so upset I can’t even speak to him

One week away was all I wanted with my family

He’s told my daughter we are not Christians that’s why we are so nasty to him

I have looked after him for over thirty years he doesn’t have to think about anything tablets, washing , shopping trying to keep the flat clean and now over a weeks holiday with my family he’s flipped

Then to top it all he phoned me to say he doesn’t think the carers have been informed because no one has come to him to change his catheter

My daughter said she sat down in front of him and told him the carers are coming to put him to bed and she made sure he had heard her

So he just rang I guess to see if I would answer or ignore him

He’s never been like this before he’s not got dementia

The nurse said he’s got a sane mind making silly decisions

I really despair at the moment and sleep is a thing of the past

Sorry

[Lynd in reply to FOXLEW]

My 86 year old mother gets very unreasonable at times. She has not got dementia. She hates relying on others and gets very frustrated with it all and has recently lashed out at my sister because she can't get her own way.

She has always been a good Mum but is difficult to deal with recently. You are not alone. Big hugs.

[FOXLEW in reply to Lynd]

Thank you so much

[Hidden]

He is just angry and frustrated that he cannot get his own way. Just tell him that you are going away and it is up to him what he wants to do while you are gone. Does he have the money to pay for a week in a care home? If so, you don't need any referral, just contact the home directly. I should personally stay away from him for several days and don't even speak to him on the phone. By then he should realise how much he needs you.

You could write him a letter reminding him how much you do for him and explaining that you need time with your family without worrying about him and that he should understand that it is good for you to be able to relax. Tell him that if he goes into respite it will give you peace of mind because you know he will be looked after safely.

Maybe you are coming to the time when you need to think about permanent care for him, you cannot keep on like this. If he is behaving so badly over you getting a break, he will only get worse. Don't give in to him, he needs to see that everything isn't just about HIM, your family are important to you as well.

My mother insisted she would never go into care. After a very fraught week of her constantly phoning me and me rushing over to her (half hour away) I put her in a very nice care home - I didn't give her any chance to say 'no', I just arrived on her doorstep and said you need to pack a bag for a week and we leave in 15 minutes. She ranted and raved but I stuck to my guns and took her. After two weeks, she decided she might as well stay! She now has company when she wants it, activities to join in if she feels like it, staff constantly there to help her if she needs it and nice meals prepared for her. How much better than living alone, being afraid of falls, medical problems etc.

You and your family are as important as your father and you need to get your life back. Go on your holiday and then think about what is going to happen with him for the future.

[FOXLEW]

Thank you for your reply. It’s resolved for now I would not leave him even fir a few days because I am a carer and very caring person

I was so hurt but I buckled up my bootstraps and went the next day with my daughter asked him what shopping he needed

He held out his arms to me crying and begged my forgiveness and he was so so sorry

He said he was in a lot of pain and his head was all over the place and I should have ignored him

I told him that he had hurt me very badly and any decisions I make are always only to try and keep him safe

He knows I do and he is mortified at what he had done

The holiday is non negotiable we are going to missy and I am pulling the cord and giving them my sisters number

Although she lives a long way for non urgent she will get their as soon as she can

For emergency he’s to pull the cord and do as he is told by the ambulance he’s deaf and blind so he can’t hear what they are saying I said pull the cord just say help they will send ambulance anyway

We took him and got him a smaller walker to be used in his flat at all times

We practised using it yesterday and he’s very happy with it

I said using it is permanent as he absolutely cannot fall anymore

His catheter is working he is still bleeding but the doctor came and checked and said he’s not terribly concerned

I said are we on end of life plan and he said no we need a diagnoses before we can plan

But even if it is bladder cancer he still could have laser treatment at 94

So he is not writing him off just yet

He has had to completely stop his blood thinners which heightens his stroke risk but doctor said it is a minimal risk as opposed to bleeding

Any one of his multiple diagnoses could cause death but doctor said I must go on holiday as it’s not imminent in his eyes

When I grow old I will make sure I’m booked into a retirement village hang on a minute I’m 64 so may not be long haha

Thank you so much for all your support

[Hidden]

Hi Foxlew, I'm so glad you've got everything sorted out with Dad. Sometimes I think that, on both sides of the argument we dig our heels in and fail to communicate because we are really angry with each other.

This is the best result you could have had. Dad will manage fine with what's been put in place and I hope you are going to go off and have a wonderful time and not be worrying about him all the time. Let yourself relax and you'll both benefit from your having had a total break from it all. Have a lovely time, and best wishes.