Bringing in Carers

[Mary C]

Hi Tess, have you enquired with palliative care team.hospice( if you are linked into one) what could be offered in terms of night carers?..Also if your husband needs this high level of care input overnight it’s worth asking a health professional from those teams if he would qualify for Continuing Care funding (not means testing) .
Also are linked to any carers association local to you to offer advise.?
Sometimes a regular respite care either in the home or for a stay in a nursing home suits some people?Social Services can offer a carers assessment ( if not a carers association can).
As you know the situation without some agreed help is not tenable as your physical and mental health will potentially be affected.
I don’t need carers yet but have had the conversations with my husband about carers when the time arises.Night carers aren’t cheap so it’s worth exploring if only for the future what might be available before the situation breaks down.Wishing you well Mary

[Jo jo]

Hi Tess, I totally get it as I’m going through the same with my partner. He was totally against having anyone else but me to care for him. I eventually broke down and said we had to have atleast one carer to help me get him out of bed and dressed as I’m not physically strong enough to turn him to get his sling on. I felt like I had let him down and the guilt ate at me for weeks. He is now accepting the carer in the morning but has now started needing me throughout the night some times 5 or six times so like yourself I’m non stop. Then now I have the carer in the mornings I have to be up early and prepared for them to come. I don’t want to get overnight care as I know he wouldn’t want it. It’s so hard I understand how you feel and it’s good to get your feelings out there as there is always good people who’s advice is amazing on this forum.

[Lynne K]

Thinking of you Tess. 3 hours sleep is excruciating. I hope that you can catch up at weekends and get more nights with carers if not. Take care, Lynne x

[Gordan1111]

Hi Tess Agee with what others have said. it won't help your partner if you not getting your rest. It's easier to be nicer to each other after a decent night's sleep ain't it x

[Ellie]

Tess, your partner is quite advanced in his MND (I think?) and the care burden must be huge, both physically and mentally. Getting help in is in no way a sign of weakness, nor is it something to feel guilty about, nor does it mean you love him any less - you are so young, many of your peers would have run for the hills by now…

He must understand that, on a purely practical level, you can’t physically continue doing what you’re doing without burnout, then he’ll find himself in a crisis situation, being looked after by people who are not familiar with his needs, maybe in a care home.

Getting carers in 2 nights per week is a good start, then you can start ramping it up. You can be an effective advocate without being his 24/7 carer - actually, probably a more effective advocate if you can stand back and see his needs and wants with more objective eyes.

Of course, none of us want carers in to start with but, for many people, there is simply no option. For me, having carers in breaks up the monotony of my boring day, and I wouldn’t be without them.

You need to be as selfish as MND is - your health and wellbeing is important too, don’t forget that…

Love Ellie.

[Deb]

Oh Tess, I am so sorry for your situation.

Firstly , please please don't feel guilty about needing carers. You are obviously a devoted partner but everyone needs sleep. You can't function on three hours a night and manage through the day.

My husband is my carer and we are able to manage and hope to do so for as long as possible without outside carers. However I do try to gauge how he is coping and whenever we see or speak to a health professional they always ask how him how he is, as do our family. You need care and a break too Tess.

Personally I would prefer outside carers than family or friends to help with personal care. I have had to get used to the indignity of my husband helping me and it has become routine but I hated it when our son had to help lift me. We are all different, however and i know people would be happy to help us and probably you too.i know we will need extra help eventually.

Lots of love and hugs to you. You should feel very proud of how you are looking after your partner in a heartbreaking situation.
Debbie x

[slp]

dear Tess

I am so sorry for you and don't have anything to share with you but want to know that I am thinking of you xx Sarah xx

[Tess]

This has been a tough subject for me and my partner to approach and I will admit we've been putting it off for as long as possible. More so a bit of a rant and I'm not sure if other relationships have dealt with similar conversations previously.

Basically, my partner told me he does not want carers in any shape or form, however we have got to the point where waking up 6/7 times throughout a night to re position him and then having to be up to care throughout the day is just not manageable anymore. Sleeping 3 hours max a night and thats on a good night. I've done this for the last few months and I'm not sure how I'm still up and about right now. So then I brought up about the family stepping in and doing the odd overnight or afternoon (they're desperate to help out) But he does not want any family to assist (otherwise he'll stop them from visiting so he said).
So then I had the conversation with him about what I should do, as I'm not coping doing it all by myself with the natural progression (I've said I'd do all the personal stuff eg, showering and toileting) and we have come to an agreement that he would prefer carers over family....and so now we have reached out to see if we can get an overnight carer for 1 or 2 nights a week for the meantime.... Reluctantly.

Talk about the general guilt of bringing in carers, never mind when you know that your partner doesn't want them. I've tried to let him be in control with as many of these decisions as possible but when it's apparent that he's not considering me in any shape or form or looking out for me, I hate to say that my hands are tied with some of the decisions i.e bringing in carers. Mentally I feel I have to justify even to myself why a decision has been made, to ease the overwhelming guilt.

My friends and family would tell me that I should have all the help in 24/7, but I often feel he's not got someone to defend him, so often I find myself defending him and explaining that so much already is out with his control.

Did anyone else struggle to get carers involvement? Did anyone have to go ahead against their partners wishes?

Tess x