Nursing mum at home but struggling

Hi and a warm welcome to Carers. I'd suggest you ask her GP to refer your mum to the local hospice. They can provide a lot of support in the home, including equipment. Please don't think it's your fault; it certainly isn't. You don't have the manpower or the equipment available in a hospital ward, nor can you put your mum on a drip when she's not drinking. I'm sure you will ask the district nurses about equipment too, ask every question you need to in order to get the help you and your mum need.Another port of call is PALS (Patient Liaison in hospital); they're very supportive. Hang in there, with the calls and visits you're about to get, things will surely change for the better. 

In the meantime, if you need to chat, do call the helpline 0808 808 0000, it's open 8-8 every day and is manned by experts.

Thinking of you,

Hi and welcome to the carers only group and I'm very sorry we've had to meet under such sorrowful experiences.

Many on here will resonate with your post and feel exactly like yourself alone and feeling helpless with off course the enviable feeling of blame that you're not doing enough.

As long as you can keep getting mum to drink that's a start and if you can get her on to something like ensure or fortisip drinks so she gets some nourishment.  available on prescription from your GP.

It's the old story lots of people coming to see your mum but nothing seems to happen, this is the time to start to bang your drum and make sure you are being heard and some form of care plan formulated for your mum.

You both should have a needs assessment from your local council, who are obliged by law to carry them out to assess you both and see what help you need including equipment.

Needs assessment  - patient

You should have a  Carers assessment 

What is a needs assessment

Both of the above are carried out by your council's Adult Social Team and can be done at the same time or independently.

NHS guide - How to move someone at home

In addition to making your voice heard loudly you could start to have a look at local hospices and see if you can get your mum into one it would be a better solution all around.

For your own health and safety something should be done to help you and I hope that it happens soon remember whilst your mum is at home she is in the care of her GP and he/she should be doing everything possible to make sure she has the best care available and not leave it all to you and if you both happen to have the same GP so much the better.

I know you feel alone but at anytime you feel the need to come on here for a chat or let off steam you're very welcome to do it here, everyone in this group understands exactly how you are feeling and sympathizes with you.

I hope you find your voice on Monday and everyone starts to sit and pay attention to the fact you need help tomorrow and the wheels are put in motion to make your mum's life a lot more comfortable and see the blame you are needlessly feeling fade away.

Please keep in touch and let us know how things progress from Monday on.

Ian

CC

Hi, thanks for replies. Sorry I haven't replied before...just not had the time. The last six days have been dreadful. Mum has deteriorated more every day.

I got input from Marie Curie nurses twice a day, a Macmillan cancer nurse and district nurses. I also got a proper hospital bed with an air mattress. 

The biggest problem has been that the medication has not increased at a compatible rate to her decline and the last 2 days, my poor mum has been so distressed. They put her on a driver 2 days ago as she became unable to swallow the tablets....then unable to swallow the oramorph. Anyway, it has been increased tonight and she has had top up and is sleeping...thank heavens.

The nurse mentioned something about Monday today.....I am praying that my mum won't be here tomorrow. I have a Marie Curie nurse coming to let me sleep....I hope she wakens me to say mum is almost gone.. I never envisaged such a time as I would pray for such a thing

Hi , I'm sorry to hear how things are. It certainly sounds like the end is very close and my heart goes out to you. She will be pain free and that's something to be thankful for. I'll be thinking of you tonight.

Lots of love and hugs,

Thank you Loobylou49 

My mum passed away at 5.20 am. The nurse woke me at just after 5 to ssy her breathing had changed. I sat with her for a short time and reassured her that I was going to be fine....that was her first concern when given the diagnosis. I told her that she was going to meet with my brother and father. I really hope that is true.

Xx

Dear , my condolences for your loss. Knowing she is free of pain now must be a comfort to you. 

Thinking of you and sending much love,

Sorry for your loss you look after yourself xx

What else can I say to you now but that I am sorry to hear your news and send my deepest condolences. I am pleased that you were able to spend those last precious few minutes with you mum and you were able to give her the reassurance that you'd be fine and she left you knowing that her work was done and she could pass in peace to be reunited with your father and brother.

Your Macmillan family invites you  when you are ready, to join them them over in our Bereaved family and friends forum group, the members are very supportive towards each other and you'll be made very welcome and as they are all in a similar position as yourself understand fully if you need to Express anger, rant and rave and all the other feelings that bereaved people have and listen to you without judging.

I hope that you have help in finalasing your mums affairs, please remember that Macmillans are here, if you need them, to help you understand the formalities.

The tear in your eye is not one of grief but one of love remembering the happier times you spent with mum, times of joy, there to be cherished and never be forgotten.

Ian.

CC