Caring for a terminally ill family member at home?

[LetThereBeRock]

I'd appreciate hearing from others who've had experience of this.

My grandmother has end stage COPD,and possible dementia,and has deteriorated badly over the past month or so.

Thankfully her GP practice is excellent,and we've received wonderful support and care from the doctors.

They've just arranged for the Marie Curie nurses to visit us,starting Monday,as we've all agreed she'd prefer to be cared for at home. I'm not sure what to expect,but I'm hoping they can make her a little more comfortable.

I'd like to hear how others have dealt with similar situations.If they received the help of palliative care nurses,and about any other aspects of home care for a terminally ill person.

TIA

Apologies for the double post.

I haven't cared for a palliative relative at home but I do care for the palliative at home professinally if thats any help.

If you want to ask any questions feel free.
The marie curie nurses should be able to help wiht symptom control and some conselling.

Could you tell me,very generally,how you assist the terminally ill person and their family, if possible?

Is your Grandmother living with you or staying alone in her own home?

We had my Grandma at home with us when she was suffering from end stages of Alzheimer's disease and it was very hard. She was a danger to herself and others and kept waking the whole house up in the middle of the night repeatedly.
We wanted to look after her ourselves but the reality was very difficult.
In the end the decision had to be made for her to go into residential care as it was disrupting the kids life too much :(
Nobody wanted to do this but by that time she really didn't know where she was or who anybody was. :(
She died after about 3 weeks in the home.

The kind of support you would get would inolve carers to come and help your grandmother with personal care (changing pads, washing and dressing etc)
You could get a hospital be on loan in her home with hand controls and a pressure relieving mattress.
If needed she would have a "syringe driver" which would give her medication in small amounts over a 24hr period to control her pain and other symptoms.
You should also be visited by the district nurses, once or twice a day.
I think you would find that generally the nurses would have time to talk to your grandma and the family and to address any concerns and also to make sure she is comfortable and pain free.
There are also nigh sitters available who could come and look after her at night every so often, so you can catch up on your sleep.
Are there several family members who will be able to share the load?

I'm a comunity nurse but not a marie curie nurse btw - can be different roles in different areas.

Generally when we receive a referral for a patient it will have a lot of information about the apatients medical condition.

From there we would go and visit. The first visit focuses on assessment of the patients needs such as symptoms which we will try and adjust the medicine to alleviate (with discussion form the gp unless they can prescribe themselves)

We'd also check what physical care needs there were. A lot of families feel they dont want to carry out intimate care (which is absolutely acceptable if you feel this way.)If there were care needs we would arrange for a care package and funding.

We also check if any equipment is needed such as a hospital bed, commode pressure relieving aids.

And (finally!) if you are in receipt of the right benefits. DLA should be at the higher rate. If your grandmother is very end stage she could also be entitled to the ds1500.

The marie curie nurses will visit regularly and may involve the district nurses. Tha family is as involved as the patient because it is usually the family who does a lot of the care and acts as advocate for teh patient especially as they become more ill.
Family also needs support as it is a very hard time.

Hospital bed , sorry

My advice to anyone inyour sitaution is to accept any help offered and also to be honest about yur limitations. It is very hard and turns into a 24hr job so please dont be afraid to ask for support including night sitters.(If you think you may want them say early, there can be a waiting list).

Thankyou all for the advice,information and tips.It's much appreciated.

She lives with my mother,and I've moved in too to help with care.

One of my mother's brothers will help occasionally.The other would be far more of a hindrance than a help.

I don't have adult experience of this but my mother has done it 3 times.
I will just say that the 'hindrance' uncle can still be utilised, even if it's just to run messages/pick up prescriptions. My mother took every bit of help she could get, she became a strict no-negotiation delegator (within reason of course) I would recommend you and your mother to try and adopt that approach.

Best of luck.

Thankyou for the tips,Profiterolethief.We'll keep those in mind.

Just wanted to say it's such a lovely thing you are doing for your grandmother,such a sad time, but I think that it would be what most people would want for themselves and their family when the time comes: to die in your own bed with family there. There is a lot of support available. Will be thinking of you, please post if we can be of any help.