Sent this to mum tonight and worried

[Cheepcheepcheep]

My text to my mum. She’s dad’s carer and he is immobile (hoist transfers) and doubly incontinent. He’s about to be discharged after his second hospital stay - a month this time, 2 months time before.

“Hi mama. No need to reply and I know we’re talking 10am tomorrow. I just wanted to say I hope you’re not thinking that I’m trying to ship dad off. I’m just really concerned that doing the nights is going to take out the both of you. I know it’s horribly inevitable that dad has a hard time now but I don’t want you being totally burned out. This is the bit when it gets really hard….

I want so much for dad that he has his own chair and his cricket and his whisky and his own house. But if we consider other options, it’s possible that he can watch his cricket in a nice room (with the occasional 🥃!) and you can be his wife, not a burned out carer.

I know it must be impossible to consider and I admit I will have no way of knowing what it must feel like after X years of marriage (and a societal expectation that you put every person ahead of you!) but it wasn’t outside the realm of possibility this might happen some day and you have been such an amazing wife for so long for him. You’ve done an incredible job looking after him yourself for so long, and saying that things are too much now is NOT a failing. If you reckon you’re up for all of that I’m of course happy to support you in it but I don’t know a single person who could have carried as much as you have for as long as you have. It’s ok to say this is too much.

I love you and I’ll support any decision you and dad make but I don’t want X to kill both my parents. Sorry if that’s a bit OTT, but I know it’s going to take one of them (directly or indirectly). I don’t want it to take you too.

I love you to bits and will support whatever you both decide I just have been thinking about next steps today so wanted to write them down. We (Dsis, DBil, me and DH, and your millions of pals!) are all here to support you both xxxxx”

Worried I’ve overstepped as it’s the first time we’ve opened the conversation about dad going into residential care.

argh. Please tell me I’ve not done the wrong thing. Mum is 66. Dad is 73 and has been ill for 20 years.

I haven't been through this (yet) @Cheepcheepcheep so I don't have any practical advice I'm sorry. However after reading both your threads it jumped out to me how your whole tone changed after getting to speak to your Dad's MS nurse and I wonder if she could work her magic and have a chat to your parents now the idea has been floated by you about residential care?

I would assume the MS nurse has been through this decision with many patients of whom you'd expect a large proportion to be reluctant/grumpy/refusing (pick your term or insert your own!) So she might be best placed on helping them to see they can't really continue as they are, plus she will know their options so rather than them seeing it as being separated/an hour a week visit only/mum doesn't care enough to cope/whatever negative worst case scenario your parents are envisioning, she would be able to explain what the future could realistically look like.

If you reread your other thread or remember back to that day you spoke to the MS nurse, do you remember how much better you felt for talking it through with someone who not only got it but could arm you with actual facts, information and a choice of next steps to take. You certainly came across as much more positive and empowered and I believe and would hope the wonderful MS nurse could give your parents the same as she gave you.

In terms of the message you sent i think you hit the right balance between bringing it up as time to seriously consider other options and that you will support them whatever decision they make. I would advise to follow up with a verbal conversation, preferably face to face as tone and facial expressions can give so much more to a conversation than mere text can.

It’s a lovely message and says wonderful things about your hopes for both your parents. Being a carer is so incredibly hard - we are watching my DM go through it with my DSF (he has early onset Dementia) and are currently desperately trying to get her to have some help.

Sometimes a text is easier than face to face (you have a young family for starters) but also because in a very emotional situation, it can be hard to get the right words out at the right time. By sending a well thought out message that gets all the points you want to make across is a great way of ensuring you say what you need to. Much love to you and your DM.

Lovely message. Has she got 2 x carers coming in for 30 mins 4 times a day to transfer etc. Cleaning the premises should be seperate claim. So sad for you. They are lucky to have you many don't. Look on Quality Care Comssion to get a feel of which agencies_individuals to avoid. I am in West Oxfordshire if can be of any help. You've got this.i

That's the sort of thing my young adults and I write to each other. I think it's a lovely message.

You sound lovely OP, so does your mum. It's a lovely message, dw

This seems totally the thing you’d need to discuss face to face first. I think she’s probably a bit shocked to get a message like this out the blue.

You can of course reinforce by message after you’ve discussed, but not before.

I haven't seen your other thread but if he is a hoist transfer, he must have double up carers coming in surely. If this is the case your mum isn't doing the main care, the carers are?

Please don't think that you have done it wrong because in fact you've got it completely right. By messaging your thoughts to your mum first you have given her the space and time to consider what you have said without having to immediately reply. You can then speak together in a more informed way. If I was your mum I would be grateful and thankful that you were my daughter.

Hello OP. you are showing such love, care and support for both your mother and father, your message is perfect. We faced something similar 2 years ago when my DF (then 85) had a second stroke. After the first he returned home my DM (then 85) cared for him and carers came in twice a day. After the second stroke which was much more serious, my DM needed my DS and I to 'give her permission'. I said that we would support any decision she made, unless it was to the detriment of the health of her or my DF. After his second stroke we knew that he needed 24 hour nursing care that only a care home could provide - and that my DM's health would suffer if she tried to look after him. We made the decision together and I think that took some of the guilt away from her as an Irish Catholic. He loved the home, was so well cared for, and we went to see him every day. He died in the Spring this year and we miss him so much. It's a very tough decision for a family, but we have no regrets.

I’d like to say this to my DM, OP. It’s so hard. You didn’t get it wrong, that’s a lovely message. But what you’re suggesting is never going to feel like an ok thing to say. I wish it was different.

That’s a lovely message and you show your love for both your parents. You are so right that your mum being a full time carer will take a massive toll on her so it’s important to look at all options and see what’s best for your dad and your mum. We had same dilemma and didn’t want to put dad into care but it was totally the best thing and we had 3 years of quality time with him. Taking him for a walk daily and out at weekends between us. Best of luck with your future and making the right decision for you all

I find stuff like this is often best in writing first. It gives the receiver a chance to digest without detailing or shutting down the conversation. Then, hopefully, you can have a more productive and more considered conversation. But be prepared she may still be fingers in the ears and la-la-la can't hear you.

This bought tears to my eyes. I’m 66 been looking after my husband post stroke for 3.5 years so I relate to your mum. It shows you care. Let her make the decision but you’ve opened up the conversation. My husband has just had another seizure/stroke so I’ve been crisis managing all week and I’m exhausted. His daughters haven’t helped and I’d love (and hate) to get that message ,don’t be upset if she acts defensively no one wants to put their beloved husband in care but sometimes it’s the only choice, don’t push her but let her know your there and supporting her whatever she decides.

Nursing homes can be really good places to stay. My sister's MiL was against one but she has to go into one after nearly burning her house down. After all the I'm not going into home arguments they asked her if she wanted to come to them for Christmas it turned into no I'm not we've a lot of things on, carol singing, Christmas dinner, Santa and Christmas films.

Unfortunately she died not long after.

I helped care for my MiL and it was emotionally draining, so I think you've broached the subject beautifully

Just to say that when my partner's mum began to have carers, and subsequently moved into care home, then nursing home, at every step it was a massive relief despite her deteriorating health and the costs etc because the family were allowed to be just that again, family, not nurses and carers. You're doing the right thing opening up the conversation and I think it's a beautiful loving message. My partner was terrified to "put" his mum in a home but it turned out to be a beautiful comfortable setting much nicer than his mum's own home and with all sorts of lovely activities, hairdressers, nurses on site, they sorted out all the prescriptions and doctors came to them etc. Maybe if she was up to visiting some settings it might put her mind at rest.

Thanks everyone - it was an emotionally loaded conversation but went down okay. He’s home with carers four times a day now. Not sure how well it’s going but we’re taking it day by day at the moment. If and when (it’s really when, if I’m honest) he goes into hospital again she’s said we’ll revisit the conversation.

I suppose coming to this decision doesn’t happen overnight so I guess it’s just trying to slowly get us all to get to the next step.

Thanks for all the support, honestly it’s such a lifeline.