Been caring for my Mum who has MS for as long as I can remember. She’s progressively getting worse. I have the opportunity to go away this weekend and I know rationally she will likely be fine if I do. But I feel like I am being selfish and choosing my own wants over her needs. I know that she would tell me to go & would be upset that I have even considered staying for her. Any tips on how to deal with the guilt?
DUMP it!
I suspect that, like me, you have been “conditioned” to put mum’s needs first. Doing what mum wanted was being a good girl, saying no was not. I was 60 when my counsellor realised that as far as mum was concerned, I was still behaving like an obedient child.
She had no right to expect me to do as much as I was doing, especially when I had a brain damaged son, was running a business, newly widowed and newly disabled. Nevertheless, mum was still saving jobs for me!
It is your mum, not you, who should be feeling guilty. She has no right to expect you to give up so much of your life to look after her.
You have nothing to be guilty about. Mum is so lucky to have your support, if she didn’t have a child at all, or her child lived further away, she would have no option but to have full time carers or be in residential care.
When did you last ask Social Services for a Carers Assessment?
When did mum last have a Needs Assessment?
Can I ask if mum owns or rents her home?
Has she ever talked to you about how you will manage when she is no longer alive?
Arranged Power of Attorney?
Hi Sarah,
Wishing you a warm welcome to the forum.
This sounds like a really difficult situation for you. I’m sure lots of others here in the forum understand your feelings of guilt. It is important to ensure you are looking after yourself as well as your mum.
You may find it helpful to contact the Carers UK Helpline on on 0808 808 7777 (Monday to Friday, 9am – 6pm) or advice@carersuk.org for advice and a discussion regarding your circumstances.
Bowlingbun has already mentioned Social Services Assessments, and if you haven’t already looked into this it may be useful to ensure you are both getting all of the support you are entitled to. More information can be found on the Carers UK website here: Carer's assessment | Carers UK.
If you need some time to yourself to take a break from caring and meet other carers in similar situations, Carers UK are running online weekly meet ups for carers. If this is something you are interested in, you can find more information here: Online meetups | Carers UK.
Best wishes,
Abi
Sarah,
you say yourself,
I know that she would tell me to go & would be upset that I have even considered staying for her.
therefore you should go.
Does your Mum have paid carers or a friend/neighbour who can check on her etc?
Melly1
I think it might be something to do with growing up female at a particular time, that it was not thought to be good to be selfish. But being selfish sometimes is important, it actually will make you come back a better carer. If we don’t get our own needs met, we risk that affecting the people we care for, even when we do our best to hide how that affects us. So if it helps, remind yourself you are going away for her sake, as well as yours?
Hi , I’ve just joined tonight , my mum moved in with me over 3 years ago after my dad died. He fell down the stairs one evening prior to Xmas. He went into hospital and stayed there till he passed 4 months later. My mum tried to live on own but I kept getting phone calls at work that she had fainted on the roadside , passed out and hurt her back in the kitchen etc. Her iron levels were very low at the time. Myself a qualified nurse , midwife etc. Was living alone working full time. I was very stressed and suffered anxiety and medication too at the time. However , as I had a spare room , single , Mum moved in with me. We decided after a while of being stressed with my job to give up work and care at home for mum. It’s been 3 years now and I’m finding full time caring for my lovely mum hard 
I’m on medication for my anxiety and nerves still and with covid found it hard . I have great friends but they have family’s etc.
Love my mum but It’s hard 
x
Hello and welcome to the forum Dawn
I’ve just started taking citalopram (10mg) because I was feeling very bad with the stress at home. I care for my mum who suffers from Alzheimer’s disease. I have been warned that the drug can lower seizure threshold (I have epilepsy) but I feel less of a mess now that I’m taking it. I did see it as a bit of a defeat at first, returning to antidepressants, but not now. It’s worth calming down.
You are very right Dawn, caring is extremely hard, very lonely and isolating. And of course, mum’s deterioration makes me feel guilty due to my own frustration.
I wish you well here and hope that your own situation will lighten too.
Take care, David
I am new to this forum but this is such an interesting topic as I feel guilty too. I live with my mum, and have done for years now, we have been there for each other so much over the last few years. Until this year when I had to go into hospital, had an operation, recovered and came home by myself as she had had a fall and was in hospital herself. She is currently bed bound and has dementia (looking into getting a proper diagnosis). I am feeling guilty because I am organising for her to go into respite in a few weeks time and she has said that when she goes, she will say goodbye and that will be it. She won’t want to see and speak to me again. Tears have been shed by both of us. I need this rest, and I know in her own way she knows that too, because I am still recovering from the heart surgery at the same time of looking after her. Had to get that off my chest, as they say.
Hi Julie and welcome
Guilt is so complex a subject that casting it out simply isn’t possible, I find anyway.
But respite care is desperately needed from time to time - and it seems as though you really need some time for yourself right now.
What I find occasionally is that my mum is quite adept at manipulating my feelings, knowing very well how I’m going to react. (I feel nasty about putting this down even.) This is especially so on the rare occasions social services call. Respite care should be exactly what it purports to be, nothing more, and you must tell your mum that a week or two in a nursing home needn’t be a permanent goodbye. For all our failings here, I hope my mother will never say that she wouldn’t want to see and speak to me again. That’s very extreme Julie and you must get that proper diagnosis for your mum immediately. Are you in contact with social services? Occasionally, a decent and lasting relationship with a social worker can be created.
If possible, think of your coming respite as a fresh start for you and your mother, needed by both.
Best wishes, David
Mum is scared, you are scared. You have to put yourself and your own health first I’m afraid.
I know I have to put my health first. Both my brother and my friend say I need this rest before something happens to me. I am trying not to say too much about it to her now. Our normal social worker is on leave at the moment, but have spoken to another nice lady. One of Mum 's main carers is really nice and understands too the stress that Mum can place on me and tells me often to have a rest.
Have any of you given respite to your parents? How did that go? I know now that Mum doesn’t like going to strange places after having to go into hospital last week and it confused her that it triggered her dementia. 
:
Some form of respite for yourself is essential. You’re in need of a good break. I know it feels awful and that we’re turning our backs on our loved ones, but if you’re in a mess it only make it all harder. Trust me, I know.
It’s the guilt I find hardest to cope with
My mum went into a residential home 6 weeks ago I know now it’s for the best as she is laughing and joking when she sees me
But I went through traumas. Wondering if I was doing this for me or her
The guilt is awful
Sue, carers on the forum who have walked the same path as you, have found it more helpful to acknowledge that it’s sad their care now needs residential care and to replace the term ‘guilt’ with ‘sad’.
It’s great that she is laughing and joking again. Enjoy your visits with her. You did the right thing.
Melly1
Sue
Your mum is happy, you hopefully are less stressed so you have done the right thing. No need for guilt. Your mum obviously needs 24/7 care.
I do understand the feelings of guilt, I suffered terribly. Guilt didn’t help my husband being in a nursing home. Me, care managing his care at the home, is making sure his needs were met did. Sad situation