Advice please on caring

I'd say get all the help you can, from Macmillan? , Crossroads Care, and any care agency you can. I sympathise, but you're going to need help, for yourself as well as your spouse.

The District Nurse is a great help , they can source equipment and useful stuff , please take care of yourself as well . I found an agency who sent a sitter so I could get out , and it was a change of face for the patient , money well spent

Contact your closest Hospice, they will know all the help that is available in your area for both you and your spouse.

Thanks for replying, we have a Macmillan nurse who we see for about a year now, I just feel so tired lately

You must be worn out with it all?
Could you ask your Macmillan nurse about maybe getting some time off, for yourself?

That is all such good advice but there is another problem, he has a massive aneurysm which cannot be repaired which makes me frightened of leaving him on his own in case it bursts

As I said I got a sitter so Jim was never on his own , you need a break from the tension

Just reading all your sound advice, which has been posted so quickly after I asked, has given me a lift Thank You

I'd say that above all look after yourself on account of the emotional traumas that you'll be going through.

newist... Your husband has got an aneurysm, and you must have been told that IF it bursts, he would have a VERY short time to live? If so, then it could happen when you're asleep/having a shower/making a drink, anything. Sorry, but it is impossible for you to be with him all the time. Have you heard of Crossroads? They are a nationwide company, who have carers to be with someone, in order for the spouse/relative to have a short break of a few hours. I worked for them some years ago, and I went to people like you and your husband every day. You have to look after yourself and be kind to yourself. You need to get your rest, or you will be unwell.

Best of luck x

Lynne59, you are so right, thats my biggest problem, because its so close to the cancer neither can be put right, for a year now I haven't left his side, last week the doctor told me exactly what you have said, telling me it will only be seconds, but I have it in my head that i have to be there in case it bursts, I really am trying to change my thoughts

I can understand how it happens.
Its trying to keep control of something which is beyond your control.

Has he had a needs assessment from Adult Social Services? They may be able to advise, also MacMillan and Marie Curie should be able to help you too.

Try to take care of yourself too .... xx

Oh thanks so much, just to be able to talk about is such a big help. I live on a small island and while people here are so lovely just lately I have allowed myself to feel a bit isolated

You must get out a bit. YOU have to stay well and you matter too. I am looking after a sick OH (nothing like as bad as your DH sounds) and my DD always says to me: "You cannot pour from an empty jug", meaning that I cannot look after him if I let myself get exhausted, both emotionally and physically. So I do go out - he has a lifeline pendant and the phone in his pocket.

It must be very disturbing for you to know that his aneurysm could burst - but, as others have said, were this unfortunate event to occur, it would be very speedy indeed and could happen when you are on the loo, or hanging the washing out or whatever. It is important to cling onto some small semblance of normality in this distressing situation.

I am sure that your MacMillan nurse would be able to put you in touch with local carers organisations and schemes to help you get out of the home sometimes. You need this. Sometimes a change of scenery can lift your spirits and help to relieve tiredness.

My OH is under the care of the local hospice: the doctor visits us at home and he goes for various therapies. They offer day and respite care, which we have not yet used. They also offer me therapies and support too - I had a massage from them earlier in the week and it was wonderfully relaxing. I am sure that you could get a referral to your local hospice.

There is one aspect of caring that no-one talks much about and that is guilt. I know this feeling.....supposing he gets ill or dies while I am out, I will feel very bad about being out enjoying myself. I g over and over this in my mind. I have come to terms with this with the help of a counsellor. We have to know ourselves, and you have recognised that you are tired - well done. Now it is time to talk to the nurse and ask what is out there, including assessment by Social Service.

I am sorry your life is so hard at the moment.

Luckygirl, thanks for that, I think you have hit the nail on the head, Guilt, I have had offers of massage and therapies but I am so frightened if it bursts and I am not there, he keeps saying I only want time to say goodbye to me, at this point of time I do not think i could live with myself afterwards if i wasn't here with him, for some reason today it just all seems worse, I hope you and every one who have posted here today realize how much help you have been

I worked as a carer in the community for 22 years, until just over a year ago. Almost everyone I ever went to said the same things as you're saying - that they didn't want their loved one to be alone at the time of death - but most of the time, we AREN'T there when our loved ones die. I know people who slept on the settee next to their partner's bed so that they were there every minute of the day and night - but still, the person died either in their sleep, or when the "carer" left the room. Please don't punish yourself by thinking you have to be there every second of the day.

In the case of you with your husband - have you got family? Anyone who can take over now and then when you need a rest or to go shopping/do chores/make meals, etc.?

Please, find some organisation to help you now. You may feel at the moment you don't need it, but you will need the connections with other people when the time comes and you're on your own. I've seen it happen.

[flower] for you, life can be very tough.

Apologies, I was trying to send you a ‘bunch of flowers’ but it didn’t work!

We recommend TLC:

Training in care techniques
Leave the care situation periodically
Care for yourself

If you're at your husband's side 24/7, eventually you're going to burn out. Then you could become ill. At the very least, you won't be in a position to continue caring for him. Not to mention that it's good for him to have a break as well, with a new face as a bit of a change of pace for him.

I strongly recommend looking into district nursing and/or respite services. Even if it's only for a couple of hours a week. This is not abandoning your husband. Far from it. It's practicing good self-care so that you can continue to provide him with excellent care.

Newist, please listen and try and act on all this good advice, which your doctor also gave you, for your own sake.
Meanwhile you are lonely and exhausted, understandably. I don't want to belittle your awful situation, but would it help to chat with some of us on gransnet, not just about your husband. Have a little break, and chat to us. Maybe it would lift your spirits a tiny bit, just to play one of the games here?, or talk about books or crafts etc? Very best wishes to you

This is exactly why GN is invaluable. Such fantastic support and advice from intelligent experienced people. Don’t let the odd troll effect our core membership. Thank you all.

carers.org/
Should be a good resource for you to find your local centre. These people support you as the carer.

Sorry for your situation. Lots of good advice here.

I used gransnet quite a lot a couple of years ago, then for some reason or another I sort of just drifted away, recently I joined a cancer carers group but I dont think I shall look again, it made me feel dreadful reading about young people caring for children , that made me feel so guilty because we are 74, I wish I could thank each of you individually because each and every one of you have given good advice and support, I know what I have to do but when I am a bit down it just seems to overwhelm me (like today) it is irrational , the fact I havent left his side for 12 months, what doesn't help is he doesn't want me to. once again Thanks in my heart of hearts I know I have to get out a little bit