Advice please on caring

Oh dear, your options up there might well be a bit limited - OR they will be fantastic if you find the right route? If you have a good GP they can be worth their weight in gold - have you tried your surgery yet, they should be able to signpost you to the right places for some assistance? xx

Have you talked this through with your husband? Have you told him you are worried that you might not be there when he dies? What are his thoughts? If you stay home you are isolating yourself and will find it much harder to pick up your life when your husband is no longer with you. My father-in-law went to a hospice in the end and it was a huge relief for my mother-in-law. Make sure you are supported as well, it is very stressful on you.

I'm so sorry, and most of what I would recommend has already been said by others. First you must find a little "me" time, even if it's only to go for a coffee or an hour or two doing whatever you need to relax - have your hair done, go and soak in a long hot bath with lots of bubbles, go for a swim, do some crafting, whatever!. Secondly, please enjoy the time you have left with him. Clear the air if there's anything either of you needs to say. Then there will be no regrets when the inevitable does happen. I've been married to my DH for 35 years, knowing that every single day we were living on borrowed time and we have both known for the last year that the end is fast approaching, so we have made a conscious effort to become ever closer. All that remains is for us to do as much as possible to ensure that he outlives his 86-year-old mother who would not cope with his death before hers. In our case, he's never been a "people person", doesn't do strangers, won't have anyone outside family in the house and the worse his condition gets, the more difficult and bad tempered he becomes until at times I'm ready to throw him out of a window, but I know it's only his frustration and make allowances. Fortunately I've got a DS who lives with us and is devoted to his dad, so I do have the live-in support - without said DS I would go completely mad! If you don't have a family around, I would have a word with adult care or Macmillan or whoever is around in your area and see if someone can look after him for you for a couple of hours a week, to prevent the "burn-out" which others have warned against. But don't worry - GN is full of caring, loving, sympathetic people who have been in/are in/understand about virtually every situation known to families and who accept that all we can do is be there for one another. Keep your chin up and don't forget, we're there for you.

Marie Curie specialist nurses give support to the patient at home and his family. Contact them and you will get anazing care advice and support right to the end.

Newist, there is an organisation called We Hear You - strange name but - they provide counselling for carers, patients and friends of people who are living with or who have had a terminal illness. I am a Cancer patient and went to them as they are in my home town. But they now do phone consultations too and are really worth trying. 01373 455255.

Yes I used to love all the chat, once to get to a virtual meeting I Kayaked down from the Hebrides to the South coast

Perhaps you could make a start by taking a bit of time to join in on gransnet?
You could offload any problems, or just have a general natter.
Its a wonderful distraction from woes and cares for a while.

LuckyGirl every thing you said in your post is exactly how I have been thinking, it has become a bit of an obsession which I know is not healthy. I truly hope I have not given you pain talking about your situation, by helping me, thank you so much

newist - I do so identify with your last post. I was told a year ago that my OH was dying - he is still here as you know, but the impact of that statement rings in my mind every day. Is today the day when it will happen? Will he be there when I wake tomorrow? It is hard to deal with this litany in your head, and I so empathise with you. Sometimes when I go out, or am less than sympathetic because I am feeling tired I think "How awful will I feel about this when he dies?" But you cannot go there - that way lies madness. You have to try and get past this feeling in order to look after yourself.

And somewhere in the middle of all this you need to retrieve a nugget of normality. There is support out there; it is a question of finding what suits you - but more than that, it is about allowing yourself to use this help without feeling guilty.

My heart is with you. x

I'm so sorry for your situation, Newist. Have you had a Carer's Assessment? It's for your needs, not the person you are looking after and is well worth having.

www.ageuk.org.uk/information-advice/care/helping-a-loved-one/getting-a-carers-assessment/

I have been sitting thinking, I dont suppose I have thought of this before, when we got the diagnoses last Christmas I was in such a shock I guess I thought the aneurysm would burst at any minute, then as time went on it just became something I did, but now I know it is affecting me, so I have to change things

newist I'm so sorry for you and your husband, such a hard thing to deal with. Lyn is right, you must not feel you have to be by his side every minute. Have you talked to your husband about his impending death and how he feels, this could help both of you.
You need to do what you feel is right but do take care of yourself too.

Lynne57, in answer to your question I have no family here, they live in England I live in The Outer Hebrides, sorry I havent answered all the caring questions but I am not concentrating to well

I'm so sorry for your heartache

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

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.

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.

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

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.

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

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

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.

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

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.

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