Just lost

[laineyash]

My husband was diagnosed eventually with MSA in Oct 2017, we have been through many tribulations and now have 2 carers coming in 4 times a day, in March 2018 I was diagnosed with cancer, I am Hubby's full time carer and in March this year I had to start chemo for my Cancer as I was on a watch and wait routine, they found a huge mass in my tummy in March this year and I have been having chemo to shrink it, I have been told that my cancer is incurable and it will come back and I will have to go through all the treatment again, I have been looking after my Hubby all through the chemo, I have had to put him into respite for 3 weeks as I'm totally shattered, I can't stop crying as I feel so guilty as he didn't want to go anywhere but my MacMillan Nurse explained to him that I would end up in hospital suffering from stress and he would probably end up going into respite for a lot longer, I am going through so many emotions with his diagnosis and trying to deal with my own and feel totally alone

[Anena64]

Sorry that you have to go through all of this. I hope that you can manage all the chemo as good as it can go.

You must remember that you cannot take care of your husband if you don’t take care of yourself. Don’t feel like you fail him. I’m sure he will understand even though he’s in a place where he doesn’t want to be.

I have MSA-C myself and I’m going to rehab tomorrow for 3 weeks. I’m so looking forward to this. I can still take care of myself, mostly. My husband and our two sons are helping me a lot with taking care of our home. But now I can take care of myself and I can let my feelings out. I’m trying to not let them see when I’m sad. My family is so sensitive and have problems with seeing me unhappy.

I’m sure it will be good for them as well.

Lots of hugs for you and take care of yourself!

[Yanno]

Hello Lainey. I am so sorry that you need to be here and that life appears to be so tough for you. You are very welcome here and hopefully will find some support from the lovely group of people on this site.

I have a very simple maxim to life with MSA - to look after your husband you have to be positive, to be positive you have to look after yourself. Please don't feel guilty and cry as you will loose the chance you're now having to charge your batteries and strengthen yourself ready for when he is at home again. Your husband will be well looked after, just reassure him that you are there for him and that you are looking forward to his coming home - and rest, rest and rest yourself.

One further small point - do you go to your local MSA Trust support group. I am sure you will find some support and encouragement there. Talk to your MSA Trust specialist nurse who will also have some good advice.

Relax, smile, enjoy your respite; do something for yourself every day and recharge your batteries.

Take care, Ian

[Elletheelephant]

So sorry to hear of your devastating situation, thinking of you and hoping something improves for you. I too have health problems whilst being a carer for my husband. It's hard, not easy when healthy but worse with your own difficulties.

Just take a day at a time, easier said than done. I know. If I think too far ahead then I'm a wreck.

Love and hug to you

Christina x

[Paul_and_Sue_Wood]

Hi

we are all sorry to hear of the double whammy that you've been dealt.

Please dont feel guilty about your husband as like everyone says to do the best for him you have to look after yourself. I am sure deep down he really does understand that you are still even in your illness looking after him and putting him in a safe place.

Be assured he is safe, well looked after, relax and look after yourself.

If you need to scream or shout for someone to listen, help or advise then this forum is for just that.

We are all here for each other to help us through all of life's twist and turns.

Believe you are doing the utmost and concentrate on your self for both of you.

Good luck.

Paul

[Hidden]

Hi, that all sounds incredibly demanding. Well done. And you're not alone. I reckon the exhaustion will catch up on you for a bit now - go with it. It may even take all of the 3 weeks to feel human again. That's OK, that's what it's there for. They don't tell you, when someone goes to respite that you can feel worse for a time. But as they say, a good workman looks after his tools. And we ourselves are the tools, as it were. every time you do something to nourish yourself, you will be nourishing him too, as a consequence. So go for it and lean on anyone and anything you can right now! Kx

[chester2107]

I'm so sorry to read this, so devastating on both parts, you can't look after your husband while you are so poorly yourself, I'm sure he understands , also he probably feels bad himself that you have had to care for him and expect he would have wanted to care for you

I know my dad feels bad that my mum has to care for him

Please look after yourself and don't feel guilty , sending love

Elaine xx

[Hellebelle]

Hi Lainey, I am so sorry to read about your situation. You have had some lovely supportive comments which I hope have helped you to not feel so guilty.

I have just returned home after seeing my dad. He has MSA C and his main carer is my mum. They are both in their 80s and although they have 2 carers 4 times a day, my mum has to be with him 24/7, apart from when she gets some respite, twice a week.

She wasn't able to go to her choir and social group this week and I noticed such a difference. She was very low in mood. A few months ago, dad went into respite for a few weeks and mum felt really guilty but when she saw how well looked after he was, she relaxed and she recharged her batteries. My dad's personality has changed over the years with MSA and he has become very focused on himself. He initially made my mum feel very guilty but again, because he was looked after well, he saw how beneficial it was for mum.

MSA is such a complicated condition and caring for someone with it is very tough. You can only do that if you have regular breaks.

I send all my love to you as what you are doing each day is very tough, especially when you have your own health issues.

I hope you can be kind to yourself and do things that bring you some comfort, because you really deserve it.

Please keep in touch if you can as we all need to support each other, through these tough times.

Helen xx

[laineyash]

thank you for your kind words Helen, I know he is being looked after properly and I know I do need this break, I try not to beat myself up too much but it's so difficult leaving him there after I visit him, I just get so upset when I think back on how our lives used to be, it's very hard to accept, I feel like it's a living grief which in a way it is, I will take this time to recharge my batteries ready for when he comes home, God bless you and you your Family

Lainey xx

[Brownbutterfly]

I cannot imagine how difficult that will be. But I agree with others that you need to try and stay as positive as you can and look after yourself first. Sending hugs your way.

[TK-67]

I'm so sorry you're going through this - have you contacted your local hospice, they can provide so many services for both of you, our nurse is even sorting out our benefit entitlement and we have a 24 hour helpline to call?

[Ballymoe]

So sorry to hear what you are going through!! It’s tough enough being a full time carer for a loved one let alone what you are going through with your own health! Please don’t feel guilty you have nothing to be guilty for. You have to get better and heal and get your strength back otherwise you will end up back in hospital and that will make your recovery slower and your situation much harder.

Please heal yourself and then your hubby can come home but you must give yourself the time you need.

Sending you love and wishing better

Lou