Advice please on caring

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!

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

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.

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

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

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

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

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

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 !

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.)

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

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.

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 ??

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.

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.

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

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

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.

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 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.

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

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

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.

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

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.
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