Advice please on caring

I'm so sorry for your heartache

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

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.

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

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/

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

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

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.

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

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.

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.

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.

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.

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

Having been a Samaritan in the past, I always suggest, giving them a call when you find things are getting too much to bear.
They are trained listeners, available 24/7 and will let you pour your heart out when you feel need to share in a confidential, non-judgemental environment.
116 123.

Hospiscare have Navigators who support you and your husband throughout your need, you may not wish to go out, but you could have a Break whilst he or she sits with your husband whilst you rest, any form of respite will do you so much good.
I send my warmest regards and wishes that you may find peace within xx

My husband had terminal cancer but we carried on as normal for as long as we could. It was only in the few weeks before he passed that he went into hospital. He was a strong man and wouldn't give in to his illness. The cancer was the elephant in the room and we didn't dicuss it overly. The only thing I regret is not discussing how to carry on after he died as I didn't know anything about the finances and it was a mess to sort out later. Fortunately, my son is an accountant and was a great help. You need to have that talk on a practical level if you are not familiar with everyday situations.

I was in a similar situation six years ago. Fortunately I had the support of my younger son and his family. unfortunately we had a Macmillan nurse who wasn't very supportive. Living in a village in a rural area we had problems with the District Nurses. Our surgery nurses weren't allowed to go further than the crossroads in the village. The next town's nurses had to visit but they didn't communicate with our GP. We had obstacles all the way. When we eventually found the Marie Curie Nurses they were wonderful as were the ladies from the Hospice who came to wash him, turn him and keep him comfortable.

You must look after yourself, try and get out as the situation is very anti social. You lose friends and new friends are not always easy to make. You need to recharge your batteries as we don't realise how much it takes out of you.

I would contact the hospice as they provide wonderful services. If there is a carer's organisation please contact them as they can provide lots of information and 'me' time for you.

Take care and look after yourself. You are in my thoughts

P.S One thing that we were never told was that you have an automatic right for a Blue Badge. This was a lifeline but we only found out through a fellow sufferer

I’m so sorry to hear your plight. Your husband is a lucky man to have such care.
Are you aware there is a special benefit for terminally ill people? It is not means tested and easy to claim.
I know money won’t cure your husband but if it could pay for extras to make life a bit easier it may help.
Here’s the link
www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/financial-information-for-people-whose-cancer-cant-be-cured/benefits-at-the-end-of-life.html

My heart goes out to you newist- I was in a similar situation eight years ago when my husband had a terminal diagnosis (MND). I know that geography makes a difference as to what is available but please make sure that you access whatever help you can.
Emotional support is just as valuable and much needed - if it's offered please say yes. We all need a shoulder to cry on sometimes.
Maybe your GP could refer you to a local hospice if one is available - volunteers visit both of you - their help is second to none.
I expect your husband said (as did mine) "I don't want people walking on egg shells just because I'm ill" but this is very difficult for both of you. We felt like there was a dark cloud hanging over us all the time and sometimes the burden can feel overwhelming which is why it's important to accept help when it is offered.
Please take care of yourself too.

Now is the time to say what’s in your mind,make sure you know what he wants when the time arrives ( funeral etc ) give him permission to discuss things with you,he will be afraid of hurting you,take pictures and little videos if possible,I also nursed my husband with a terminal,brain tumour,how I wish I had videos of my husband telling me how much he loved me and reassuring me that I would be ok,I know some people wouldn’t like that but I would,take care and take any help that’s offered

My husband was in a nursing home when he died. The night before we were together and the last thing we said to each other was I love you. He died in the night, alone, from a heart attack. But he knew he was greatly loved and I feel no guilt that I wasn’t there. It will be two years tomorrow since he died. My advice is to look after yourself because as others have said if you can’t look after you you can’t be there for him.

You must look after yourself because if you become ill then you will not be able to be there with him at all!

I have a friend whose husband is now in a nursing home because 24 hour care was getting too much for her. He was, at first, unwilling for anyone else to help her when they were both in their own home - but now they are both 100% happier because she is more rested and they can have so much more quality time together.

Look after yourself

And please don't forget that it is perfectly normal and natural to feel depressed or sad about this - you're not superhuman, after all.