Bringing in Carers

[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

[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

[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

[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.

[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

[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

[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.

[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

[denise]

Hi tess
you really do have to think about yourself. I know its difficult but you will make yourself ill without any rest. You could also end up breaking something through tiredness. Then someone will have to help and you might not be in a position to choose who or when.

I look to see how you're getting on and worry as I am so much older. But I do think there are times when you need to step back and get some help.

Lots of love Denise xx

[Suefromwakey]

Tess what an absolute dilemma - one I have not yet faced - this whole thing has aged me - I cried everyday for at least a year when a consultant used a throw away comment "prepare for MND" you are young and have far more in front of you that I - its hard to know what to say as you end up going with the flow and most certainly do not look after yourself like you used to - how can you? its an impossible situation,

I shall think of you, best wishes

Sue

[Tess]

Thanks for the responses. There is definately a vulnerability with letting anyone come into your home and hence the reason we are looking at 1 or 2 nights to begin with, to ease in. I always try and put myself in the persons position and its a horrible thought that if you didn't want something but it's forced upon you. I thought to simply turn him over from one side to the other 6 times throughout a night wouldn't be too difficult- no machinery involved and on the list of care duties one of the less vulnerable tasks for him to have a stranger doing.

Oddly (for some) the day time for me is absolutely fine for now, I can do moving and handling, feeding, toileting, showering. It's if I'm running on 2/3 hours sleep and then have to do the day care, this is what's causing me to be in a place of desperation for help. The bazar thing is, I often see us as not too far along (he's on no meds and can eat normally, can talk (albeit more faintly) and can still click a mouse for his computer) but then again with so many progressions there's different levels of what's manageable, maybe it has crept up on us and we're further along than I thought. I remember him telling me as soon as he couldn't manage the bathroom by himself, he didn't want to be here and then I also remembering us both sobbing when we got to that point last year and here we are.

I completely understand that not all individuals want family to see them a certain way as an adult and so carers for some is a preference and following our discussion is his preferred route however reluctantly.

We are on a list to be assessed for a full care package, but this more urgent short term care is being looked at now- fingers crossed they come back to us soon.

x

[Lynne K]

Google luck Tess x

[Samanth]

Dear Tess,
My story with my husband was so similar. He had frozen shoulders on both sides from quite early on in his diagnosis so slept poorly, needing turned many times per night. His MND also progressed very quickly making manual handling very physically exhausting. I was having to carry him up the stairs everyday. I got to the point that I did not feel safe driving as I was so exhausted. My husband refused all care until I got to breaking point mentally. It found it very hurtful that things had to get to that point before he would accept care but he was just so reluctant to have the invasion of his privacy. After he agreed unfortunately we then were unable to get any care and we ended up moving to N.I. to my parents were all care is provided free of charge.

I have a few suggestions that I learnt along the way: It is great that your family are keen to help maybe they can help with other things such as cooking, cleaning or shopping to give you change to have a nap during the day. I found that found that having having something to do outside of being a carer really helped keep my sanity. It might be hard to find the time or energy but it really helped me. You mentioned that your husband wasn't on any drugs. Starting on some may help him sleep for longer periods during the night. There are also aids that that would make it easier to turn him. Initially we used snozzles(https://www.thesnoozle.com) before moving onto wendylett sheets.

We currently have Marie curie carers that come in 2-3 times per week to do night sits. This might be somewhere to try if you are struggling to find care.

Sam x

[Tess]

Hi Sam,

I've never heard of the snoozle before, so will definately check this out- thankyou for the suggestion. He's not got use of his upper limbs and this is why turning right now has been such an effort. We're in the process of trial and error with bed comfort but hopefully small changes like maybe getting on of these might help. I'm finding when repositioning him from one side to another it's quite specific. His head has to be placed at certain part of pillow so his neck does not get sore, his hands and elbows in a position so his wrists and fingers aren't stuck in an uncomfortable bend. We now use wrist/hand splints to go to bed with to avoid the wrist pain also.

Carrying him up the stairs would be a huge task for you! I completely get how you feel- the exhaustion. We did try various sleeping pills previously but non had an effect. I have heard that anxiety pills sometimes do the trick for a better sleep, more deeper sleep but unsure. Out of interest what pills is your husband on?

Call me crazy but having been put on furlough last year, I started a baking business for UK delivery called 'Blether Box'. I had to have another focus aside from caring and wanted to try help others. Baking but with the twist that each box contains 4 blether cards to take your mind off the current. The concept is to encourage people to talk to one another about new things albeit by phone call, video call or distanced walks. As much as it came from a good place I was getting fed up having the same conversation with friends and family about the weather and how I was doing.
The focus of it has been mental health awareness and oddly it's done wonders for keeping me sane and having a focus myself. I bake once a week which is enough with my current life and caring etc, not to mention plenty of marketing involved with it on social media. I've not advertised my current situation of my partners diagnosis through the business, however in months to come I most certainly will be creating a fundraiser of sorts.

While i'm posting this, I might as well give everyone the details for the business, in case you see this post and want to check it out. I tend to focus on instagram and luckily there's settings that share the content on FB at the same time. Currently running an Easter Box in two sizes (Creme egg brownie and Mini Egg cookie bake)

Facebook: bletherbox22
Instagram: bletherbox_

[matthew55]

Hi Tess, please look after yourself so you can look after others. We are not machines are we? 👍😉x