My mum has had MS for over 30 years and lives in a nursing home. She’s totally bed bound and and struggles to communicate because of her cognitive issues. I’m sure she knows who I am, but she can’t remember my name. She enjoys watching my children play but I’m not sure she realises they are her grandchildren.
Last weekend I couldn’t wake her up so the nursing home called an ambulance and we went to hospital. The doctor told me prepare myself for the worst and talked to me about resuscitation - whether she would want to be resuscitated or not. At that moment I thought I was going to have to say goodbye. She looked peacefully asleep and she’s been through enough in this life. I don’t want her to suffer any more. I called a priest to come and see her because I know that’s what she would’ve wanted. Then very slowly her vital signs began to pick up and she started to regain consciousness. She’s now stable and should be moved back to her nursing home in a few more days. I just can’t seem to get over it. I should be happy that she’s still with us - and indeed I am grateful to have her around a bit longer. I just don’t think I can deal with this any longer. In many ways I lost her years ago and I thought I was strong enough to cope but I’m not.
You’re not - my husband was admitted last week with a urosepsis - they thought he’d gone into septic shock. In his ‘base’ state he is doubly incontinent, bed bound, his right side is useless, his left side shakes, and his head has been so affected he calls me and the kids all the names under the sun (they are primary school age).
They asked me about artificial respiration - I immediately said no. I truly thought this was the end to this horrible nightmare - for him, me, the kids, his other relatives, and everyone else who picks up the pieces for me every time we have a problem. And then he came round - absolutely fine, other than the urosepsis which is being treated - no problems with anything else internal - and he’s still shouting and swearing (only now he’s added the hospital staff to his list of victims).
And who can you admit to that you’re disappointed? I put on the smile when people stop me and say “isn’t it great he’s OK”, when really I want to just say “for who?”.
Don’t think you’re alone - I’m crying writing this. I’ve been with my husband over 18 years - but I lost him a long time ago to this illness. I’m left with someone who looks like him - but he would have been horrified at his behaviour now - and the sacrifices we all make because of his health.
Some people here may not like this post - I’m just trying to be honest. MS has taken my husband, but it continues to affect the rest of us. When the time comes, I will be sad - but I’m hoping it’s sooner rather than later.
Take care - remember you’re not alone (there’s at least 2 of us, and probably more if people were honest)
I feel for both of you, my husband is in the early stages but the disease is progressing so fast that at 29 I can see I will be on my own a lot sooner than I ever anticipated. It is not wrong to admit how you feel, how can you feel any other way, watching them in pain and not being themselves just a shell xxx I hope you all reach peace, however that is xx
There are many more than two of you. In my house I am the one with MS but a few years ago I prepared a living will, a copy of which is in my hospital notes, and I discussed with my family how much I was willing to put up with and how much I was prepared to let them put up with.
In both the situations noted above I have stated no treatment except to ensure I am not in pain - and I would not expect my family to be looking after me at home. I just asked them to choose a good care home.
Preparing it plus power of attorney was difficult but I think too many of us put off these things, then it’s too late. This counts for everyone, not just people with ms, at least if we all had the guts to discuss what we’d want it would make the decisions easier for families.
I have made it clear to all my fanily that if I ever get hit by a bus, and am left anywhere like my husband is, then they’re to put a pillow over my head. My husband refuses respite, my eldest who’s 8 begs me to put him in a home (but hubby just gets angry when we say we’re not coping at home), and many years ago he told me that whatever happened he wanted to be kept alive as long as possible whatever his mental or physical state. So, it’s a betrayal for me to tell the doctors the opposite. I don’t do that for my own gain - I’m trying to save my kids from the anguish they are too small to get their heads round. They are both adamant they don’t want to visit him in hospital (they can’t go anyway because of the E Coli), and the social worker tells me there’s nothing we can do (we have carers 4 times a day which is the maximum, but it’s the other 22 hours a day that’s just me and the kids). social workers solution is that I just leave. I don’t want to - I just can’t cope like this.
I think what you’ve done is a very brave and selfless thing to have done. My family know my feelings on care at home (put me in a care home please), but my husband’s are the opposite.
I know how helpless it feels when you see someone as close as your mother on the bed and fear that one day she might never open her eyes. But from your post, it looks like you’ve been very brave and have faced the situation very maturely. I lost a friend some 5 years ago due to MS and still cannot get over it. I just wish well for your mom and you.
Hello, just felt the need to drop a quick reply to this post.
My Dad has MS, is in a nursing home and sounds very similar to your Mum. For about the last 18 months he has been in and out of hospital and on several occasions the situation has been for him exactly as you have explained above, even to the extent that I have had similar conversations with the hospital. Every time he has been very poorly (always an infection of some kind) he has pulled through, although each time he loses a little more strength and we lose a little more of the person he used to be.
I’ve become a bundle of nerves and anxiety in the past couple of years, it is only in recent months that we have managed to get him into a nursing home - he was living alone with carers prior top that.
What I wanted to say was that you definitely not alone, I feel every word you are saying and it so so hard, and I can’t help feeling it is cruel for everyone involved. If you ever want a chat please drop me a message but don’t feel guilty about how you feel - it is only because you care so deeply for your Mum.
My mum has MS and has moved away in the past 2 years, she lives 1.5 hours drive from my house now, so the only time i can visit is weekends due to work commitments. I try to maintain phone contact with her, but for my own selfish reasons its hard. She is suffering a lot at the moment, and she screams in pain and stops talking on the phone as the pain is bad. She keeps going to the doctors / hospital / specialists and nothing seems to be changing.
My dad is her sole carer, and I cannot imagine what this is doing to him, they have been together since their teens, 40 years now! He doesnt like to accept help but admits he is tired.
My mum wants euthanasia when things get bad…she doesnt deserve to suffer so much she is such a beautiful person.
Thanks to you all for being so honest about the way you feel. I’m feeling a bit more together than I was when I wrote my first post. But it still hurts. Although Mum survived this time, she’s just a little bit weaker than before, and I didn’t think there was anything more of her that we could lose.
I’ve been more honest with people around me who haven’t accepted that there are things worse than death. And people rallied round for a bit, and now I’m feeling ok enough that it’s just easier to say “it’s fine”
But it still hurts and it still helps to know I’m not the only one in this nightmare situation.