coping with family while caring for Mum

[raw1]

Hi,

I'm new to this kind of thing but could definitely use some support.

I'm living with my mum as her carer. My 7 year old daughter lives here too. Mum has been reffered to Pall Care and I'm really doing the best i can with what i've got! 

Mum was in the hospital recently and I was just after some answers. i watch the dr's exchange looks but they're not giving me any info about what i might expect in the dying process. I want to minimise my daughters distress as much as possible in all this and be a bit prepared myself.

Then i got accused by family of wanting to control how it goes, receiving patronising comments about "staying zen" and just going with the flow (which mostly I do). We talk openly about it all but I feel like i'm not allowed to have any feelings around how this is for me. The really tough days. The tired, angry, scared days. But I know thats NORMAL! 

Really struggling with family who aren't living here doing it. They will probably never understand nor accept how difficult it can be somedays.

But it feels like such a weight to bear when they feel the need to insinuate i'm doing it "wrong".

Any help gratefully accepted!!

[Lisa k]

Hi Raw1 , sorry you are facing this. I know just how very difficult it is to care for a terminally ill loved one. I lost my mum one year ago yesterday. I cared for her for nine months, she had lung cancer that had spread everywhere. I'm not sure if the dying process is the same for everyone but with my mum she didn't eat for the last five weeks of her life and gradually became weaker and always sleepy and confused. Sorry your not getting the support you need from family, but it's easy for those to pick fault especially as they have no idea just how stressful and tiring it is to care for someone. 

Even though I knew my mum was dying, I still wasn't prepared for when it happened. I'm not sure if this helps but I hope in some small way it has. My thoughts are with you.

Hugs Lisa. 

[Cigi]

My Mom was at home for 2 weeks with hospice care before she died.  A nurse came 2 days the first week and between my sisters and I we took shifts so my  Mom was never alone.  I had the overnight shift, plus I was in charge of the medications and its a huge responsibility.  The 2nd week, the nurse came as scheduled,  but I had them come several other times during that 2nd week, when my Mom really started to decline...I wanted to make sure I was doing everything I was supposed to.I know what you are going through...its the hardest thing I have ever done. I'm really sorry that you are not getting the support you need and deserve from your family...unfortunately, its easier to criticize others, than to actually do the job. Are you able to contact nurses if you need support or have a question?  Don't worry about others questioning the job you are doing...just do your best and forget the rest. 

[Tochter]

I agree with you Cigi, we all have different abilities and some deal better with these situations than others. I myself could not bear watching my mom suffer, there are stronger types out there who can handle it better I am sure. Once I am vested into a relationship, and that applies to good relationships of course, I am so vested that the loss is quite severe and I happen to space out in my own life. To be jolted back into my own life is like getting the aid of a defibrillator, very painful.

I am glad that my mom did not have to suffer for very long and I realize now how incredibly tough it is to care about a terminally ill patient. I would not have the strength to do that I think. My mom had that strength, she is (was) very strong and cared for her own mother like that over 4 years, while still keeping her mentally ill husband at bay. I don't know how she did all that without loosing her sanity.

[Lottie_Lulu]

My post has description of how my dad was when he died so please don't read if you'll find it upsetting.

I googled what happens when someone dies and it was really helpful as I could look out for the signs. My dad was in a hospice and at the end they were still saying they might have to move him as they only allowed people there for 2 weeks and he died at the end of the two weeks (I think he might have got himself into such a state that he just stopped living). The nursing staff's attitude will change when they know the person is about to go. They'll stay suggesting you stay there a bit longer. They'll stop any medication aside from pain relief and Dad had someone in to see him every ten minutes who injected something. The breathing changes and they make a death rattle noise which once you've heard you will just know. The breathing is automatic and looks different as the chest goes up and down without the brain engaging. Again something you'll know when you see. And Dad had the smell of nail varnisher remover which apparently is the organs breaking down. I thought in the weeks leading up to this he was going to go at any point but it wasn't until the end when the body was giving up that I really saw how he was only at the end right before he died. It's like you know because you can see how bad they are.

The whole nursing towards him changed and they started saying things like did we want to say goodbye, did we want to sit with him. We left at 9.30pm at night and they said we could sit with him, or they could ring up to say he was going, or they could ring us in the morning. So best to decide what you'd like to do. 

And no if people don't live with it they have no idea. Best to keep them at arm's length, maybe have someone you can confide in or moan to. I know this situation only too well. Being zen is a load of utter bollocks. 

x