Advice please on caring

Newist I was a carer for 20 years and I understand your worries about not being there at the end. In a way, I was lucky in that for 3 of my loved ones I did manage to be there at the end even though worried about going out to buy food!
I also used to live somewhere around where you are and I know that the people there are amazing in times of illness and death.
One of my loved ones died of a ruptured aneurysm. There were signs that it was coming but I did not know at the time. I was not that person's carer or next of kin so I was not given the information.
If you wish to speak about things feel free to PM me.

Caring for someone who is chronically or terminally ill, can be very difficult for so many reasons. As others have said, you must look after yourself - if not, you may collapse before your husband. Then what would happen to him?

I very much liked the interpretation of TLC (usually tender, loving care) reframed as:

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

TLC would have been good for us a few years ago: not your situation exactly but I did care for my adult disabled stepson at home for several years until he moved into a lovely fully supported house. I had tremendous feelings of quite irrational guilt when, for example, we went out or away, even though we always left him with someone who was kind and competent.

I hope you are able to get and take more help, you sound very kind and thoughtful ??

I quite understand why you don't like leaving your husband, but you do need some time to yourself. Is there any chance of getting someone, a friend, relative maybe to come in for an hour or so, so you could take a rest, read a book, whatever you like, but still be within call?

Oh, yes, we all know the dreadful days, where it all gets too much, don't we? Hope you soon feel better.

I have just read through all the recent posts, the tears have been streaming , not of unhappiness but of being a bit overwhelmed by everyone's kindness and good advice, I wish i could reply to each and everyone but I am not the fastest at typing. every post has something in it I can relate to. My husband was born with a gap in the motor part of his brain which mainly affects him when he is stressed, it has never been diagnosed and never will be, an example is he told our doctor he had just been for an autopsy instead of a biopsy, if he cant think of the words he wants to say he just uses something similar, a couple of weeks ago it was difficult I had to take him to hospital because he was sitting on the toilet for hours, turns out it was an enlarged prostate gland, he had been telling me he was constipated. We do talk about him dying quite openly he says he will just take what comes, the main problem with this aspect of things is he looses his temper when he is frustrated, with other people when they talk above his head, he never says anything to them but when we are alone he starts shouting at me, I was going to get some help with cleaning , so he totally for the want of a better word Lost it The doctor thinks he has a form of Dyspraxia he is slowing down, when he is very tired its hard to understand what he is talking about, he does not seem to understand illness, he insists he just has a smokers cough, he has lung cancer , I think this aspect of it is what makes me so tired

Aren't Marie Curie meant to give a helping hand too? (Mind you, they did nothing for my mother but that was in 1999. Things might have improved since then.)

Oh dear newist ! You must contact some of the organisations mentioned here ...my husband has Parkinson's with dementia and oesophogeal cancer ...but as I live in France we do not have any organisations (McMillan etc, or hospice care ) the doctor says he cannot be left alone. He insists he can but he is now like a 2 year old and it is so sad ...I do go out but only for the newspaper and a coffee,,normally am in doing the mountains of washing he creates as he also refuses to wear the incontinence pants ....like you, I am exhausted and badly in need of a break. Sadly he understands nothing ......and refuses to go for respite care ....I agree with you this is so hard but it is good to hear words of encouragement from all on here ! Good luck ..if you are able to take advantage of a carer when offered you must do so !

Newest you are there when it really matters. I know you want to be there when the time comes but your DH will just slip away quickly and may not know you are there. Isn’t it great you are there when he is conscious and knows you are with him. Sending you lots of love and strength

My DH was taken into Hospital in November 2012, initial diagnosis was pneumonia but by mid December he was found to have Lung Cancer, he was transferred to Nursing Home as he was too weak for anything other than palliative care, I could not have cared for him at home due to my health.

Sister at the Home had a long talk with me, one piece of advice was "don't feel you have to visit everyday" also to look after myself. I popped in 3/4 times a week. The morning he died one of the nurses rang me to say they had called the Doctor & could I come down, before I even got out of the house she rang again to tell me he had died. I always told him I loved him when I left so no guilt.

You must take care of yourself, as others have pointed out you cannot be there 24/7. My thoughts are with you

Has anyone suggested the possibility of a respite stay in your local hospice? I work in one occasionally and we often have people to stay for a week for respite care so their partner can have some, essential, ‘me’ time to recharge batteries etc. Do look after yourself so you remain fit enough to be there for your DH

I thank everyone who has taken the time to reply to my question, so many of you are either in very painful situations or have had painful events in your lives, you have all been kind enough to talk about your pain or relive painful memories, believe me when I say you have all helped me so much, I have taken note of every thing you have all said and I will put all the good advice you have given me to good use Thanks again

We had excellent help from our local hospice when my dad was dying
My sis & I cared for him at home with mum It was an awful time but those nurses helped us so much I don’t know what we would have done with out them
Hope u can find as much help

My darling husband died following a long illness. You’ve had some marvellous advice here. May I gently suggest that your affairs are in order, if you have not already tackled this. Wills, access to accounts and so on. We had time to do it together. I know you must be feeling exhausted, but it is hugely important and saves endless complications. Best wishes to you both.

Thanks again for all the good advice, so much of it from difficult situations poster's are in or have been in, which has made me so much more appreciative of It, I shall start as much as I can to put it all into practice, Thanks

Your GP and the nurse at your locsl surgery can fill out a form entitling you to Carers Allowance which is a great help. My DH died 10 years ago and the allowsnce was available to carers of terminally ill patients. I found that McMillan was helpful. DH finally went into a hospice but died the first night he was there. I still miss him very much. It is hard for you but reach out to those orgs mentioned here. Gransnet is wonderful!