End of Life Care

[Louise70]

How to feel ???

Hi Everyone,

I have been popping onto TP for months now wanting to post a thread telling you all about my mom, but couldn't find the right words.

After reading you thread I couldn't help but reply. Mom was diagnosed last January and other than slight forgetfulness she was doing ok, other than not baring to be left alone. My Dad (who split up with mom 20 years ago) started staying 5 nights a week while my brother worked. Things carried on pretty much as normal, other than mom not wanting to leave the house so we'd walk up and down the garden if the weather was nice.

Last July she was wondering in the night and fell and broke her Hip she was in hospital for 2 months and the deteriation in her condition was equally astonishing and heartbreaking. She couldn't walk anymore and seemed not to care to try, but we encouraged her as much as possible. She came home and an air bed was supplied and carers come in 4 times a day to wash and change her, before the fall she was going to the toilet etc herslef still ok. Then just before christmas she had a stroke she lost the use of her left arm and the left side of her face has dropped. She can no longer feed herself and when offered she will barely eat or refuse. She is just skin and bone.

Every now and then she will talk to me normally, she said last week "what has our life come to bab" ? I just said i don't know mom then she said "my life is rushing past me, I don't know whats going on". It's just completely heartbreaking my best friend no longer responds to my smiles and comfort.

The Doctor came to see her yesterday and said "she is very weak, just give her TLC thats all you can do", I asked him outright is she dying and he said "she is very weak it could happen anytime in her sleep anytime" and he went...

I wish i had posted earlier so I could have been better prepared (if you ever can be that is) for what is to come. Although we watched my Nan die 6 years ago from the same terrible illness she was alive for 10 years after diagnoses and I thought Mom would be the same or at least hoped.

So now here I am faced with the worst thing ive ever had to face and i feel completely helpless, hopeless, and unable to make any sense of my feelings.

I hope what I have written makes some sense it just sort of came out in one big rush.

Louise x

 

[Mameeskye]

Thank you for all your thoughts.

Rummy I have just put that book on order. (and thank you Hazel for the link...it saved me a couple of minutes looking it up!)

I have also had experience of a wonderful Marie Curie nurse the night my Dad died. She made the evening very special and for me less frightening. Becuase it was such a special time I hope that I will be able to be there for my Mum.

But my brother who was there that night hated it. He felt he could not say to Dad what he wanted to say, and even had he said it Dad would not have understood. I knew that Dad could hear, don't ask me how but just that he could and was there with us. I am so thankful that he allowed us that.

It is funny that one of the nurses in Mum's home and I were talking about last offices and she said that the one thing that she has always done that was taught to her by a very old nurse as she was training 25 years ago was to open a window as someone died to allow their spirit to escape. Although she has no strong beliefs she tells me that she still does it and recounted to me a story of what had happened with a painted shut window and how she was trying to loosen the paint to get the window open and all the things that she tried!

My Mum may decide she doesn't want us there and I respect her choice. It will be her final decision and I hope that she can say "I did it my way"

I should perhaps apologise for my very dark sense of humour but I believe that this is what helps me get through..seeing the humour in the situation. It is a gift from my Dad that I love!

I also intend getting around to putting an Advance Statement in place in the next few weeks. We also intend to ask my husband's parents, to prevent him having to make hard dceisions. We doubt they will, which I think is a great sadness as both are terrified of "the end" and cannot discuss it other than to say that they wish to be kept alive. I feel sorry that he may have some hard decisions to make in the future and the guilt that he may feel as they have no true understanding of what some illnesses can do to you. If anyone has any ideas about how we can broach this with them...unfortunately they seem to have this conspiracy theorist approach to life that if a donor you get dumped for your organs etc....

((((((hugs)))))) back to you all. I loved the big ones Nell.

Now better get back to work..there is nothing so certain of making you aware that life goes on regardless as a monthly set of accounts, Board Meetings and of course the boys' swimming lessons!!!

Love to all

Mameeskye

 

[Mameeskye]

HI Louise

((((((((((((hugs)))))))))))))

There is nothing that I can say to make this better for you. I have had so long to grieve now for Mum but I can well understand how I would have been feeling if this had happened some years back.

It is so hard and words do not amke it any better when it is so raw and painful.

We are all here for you and anytime that you want to chat or talk we are around. Wish I could just come and give you a big hug and have a cuppa. I so know what you mean about your best friend going.

Thinking of you at this sad time and hoping that all is as peaceful as can be.

Love

Mameeskye

 

[Louise70]

Thanks

Hello Mameesyke

Thank you so much for your kind words it means a great deal to know your not alone.

I will pop back later for a chat and a cuppa.

A big Hug to You.

Love
Louise x

 

[Skye]

Hi Louise, welcome to TP.

I'm sorry you're having to go through this with your mom, it has all happened very quickly for you, as your mom was only diagnosed a year ago.

Please come back and talk to us, you'll find lots of support.

Love,

 

[gigi]

I should perhaps apologise for my very dark sense of humour but I believe that this is what helps me get through..seeing the humour in the situation. It is a gift from my Dad that I love!

No apologies necessary,Mameeskye!

I took time out 3 years ago to nurse my dad in the final stages of pancreatic cancer-he refused to go into hospital. They were difficult times-but such good times in other ways! And my dad that I still love also gave me that gift of humour even when he was dying...not everyone sees it as we do-but you are doing a great job there-and I'm with you every(virtual) step of the way..

I remember the opening of a window on the ward to let a soul free-did it for my dad in his own bedroom when he died..

There comes a time when we have to accept and let go-hard for us left behind-but in the best interests of those we love who are moving on..

With love and wishing you strength of spirit for the future

Gigi xx