My mum passed away last night. She wasn't in any pain or discomfort.
She had flair up of GCA and a chest infection that suddenly caused what turned out to be untreatable sepsis. It was all over in under 48 hours. We are all devastated.
They told us that the leflunomide may have contributed to the lack of white blood cells. The combination of her PMR/GCA, the zero white blood cell count and the lowering of her steroid dose all left her with no possibility to fight it.
She was in Hospital, the ICU then another ward where all the staff went above and beyond to help her and us. We got to visit three times in plastic aprons, gloves and masks. The last visit was about 12 hours, with her the whole time holding her hand until she slipped away peacefully in her sleep- she was calm and it was what she wanted- she even had a little smile as I told her I loved her.
We spent the time talking about friends and family and saying everything we needed to. Unbelievably grateful that her initial delirium vanished and she was lucid and making jokes, sarcastic comments, having a little laugh and so on even though she was aware of what was happening, she was grateful for all the people in her life and their companionship but she had coped with so much over the last year without her sight, she was tired of it all. Me and my son (her beloved grandson) spent hours with her, holding her hand and giving her little hugs, she was very comfortable and not scared. It was all as peaceful and dignified as she could ever hope for.
She asked me to inform anyone on here to please keep a look out for signs of infection and or sepsis when they experience a flair/relapse and to consider asking their doctors to drop the Leflunomide.
Her bravery once again shone out like an inspiration she didn't have any overwhelming self pity like you would imagine, just thinking about other people first - absolutely heroic my little mum 💛
Written by
Jeromekjerome
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🌼Thank you for sharing. She was so fortunate to have you in her corner dealing with her final struggles. I'm sure this was a great source of strength for her.
Bless you, I am so sorry to hear that. Your mother couldn't have had a more devoted son, you have done your absolute best for her. Big hugs to you and your family.
Oh, I am so very sorry for you & your family, l’m glad you were with her & she was lucid, what a lovely lady to think of us all on here.
She has had a very hard year & you have been the most wonderful son with all you have done to get her the best treatment & help after she lost her sight.
I'm so sorry for you left behind - but what a lovely way to go in the end and what an appropriate day. There does come a point where it is time - she had reached it. Look after yourselves - and enjoy your memories. Virtual hugs xxxxxxxxx
So sorry, you did your very best for her. She sounds like a special lady.
So very sorry to hear your sad news, I hope you can take some comfort that your mum had her loving family around her and that she was peaceful and calm to the end. Sending deepest sympathy at this time, take care of yourself, and best wishes to you and your family at such a difficult time 💐🌸💐
You first contacted me on the 1st November 2019. What a tough year it has been! You're mum must have been a wonderful woman coping with the sudden changes in her life and you have certainly been an amazing daughter and given her the best possible support and care. So glad that mum was able to have a loving calm opportunity to be with you and her grandson as she died. With love and kind thoughts, Joan x
Thank you for carrying out your Mum's wish. It must have been difficult for you at this sad time. Take comfort that she was ready to go and I can completely understand why.
You will, in time, look back on all the good times and know you did as much as you could for her all your life - yes even as a baby you made her smile.
I am so sorry that you lost your wonderful, heroic, little, mum. I am glad that she had a gentle death with her loved ones near her. I am glad the staff went above and beyond. Her generous advice to us has been duly noted. You were wonderful to her. I have thought how lucky she must feel over the months.
I gain comfort from thinking of my mum’s death, now, it was peaceful and surrounded by love. A blackbird sang in the tree outside her window. I thought I’ll never be scared when it’s my turn. Take great care of yourself. Losing your mum is a big, big, thing. My heart goes out to you and the family. 🌹🌷🌺
Yes, my memories are similar to yours, in mums last days she marvelled at a wonderful tree outside the hospice, on mothers day a few months after her death we planted one.....everyone admires "mum's tree"......they are always with us......
I am sad to hear of your loss, but pleased you had time together. I glean from your writing that she passed peacefully, surrounded by love and warmth from her loved ones. I hope that this will bring you at least some comfort. For her to ask you to raise our awareness as she did, makes me think she was a pretty remarkable, selfless and thoughtful lady.
You are likely to come down with a bang at some stage. So don't feel you now have to leave us, since you may need support yourself over the weeks, months to come. There is always someone here, as you know, if you need an outlet or an ear. ♥️♥️♥️
Virtual hugs in abundance. Thinking of you and yours. Xx
She left this life the way she lived it - with humor, courage, grace, dignity and love. How glad I am that you and your son could be with her. How glad I am for her that you were there.
My condolences to all the beloved family and friends who will miss her. May you all soon remember her with a smile, and without a tear. Seems she would like that..
So sorry for your loss. I am absolutely blown away by your Mum's thoughtfulness for others just as I’ve been inspired by your efforts on her behalf over the last year. I’m so glad you were able to be with her. Please take care of yourself. 💐
I am so sorry to hear that your lovely Mum has passed away but glad for you that you were able to be with her and that all was peaceful. Bless you and your lovely son who will always remember his Grandma with love and pride.xx
You intended this for Jeromekjerome but I'm sure she will have read it and is grateful for your message. (I've also replied to the wrong person at times: so easily done and not important in the great scheme of things x)
'Absolutely heroic my little mum' brought the tears to my eyes as it brought back memories, as it must have done for many others, of the goodbyes we've said to loved ones. You sound as strong and loving as she was , she lives on in you and your son. So glad she was at peace and you were both there beside her 💐 🌹
I am so sorry that you have lost such an amazing mum, but pleased to read that you and her grandson were able to be with her. I have been inspired by her strength and your care and concern for her since your first post.
One amazing Mum, thanks so much for sharing. Sympathy & hugs to all your family and friends at such a tough time...so glad you were able to be with her. S x
I'm so very sorry to hear this. You have been a great source of support and love to her throughout. Very touched that she was thinking of others at this time, thank you.
So sorry to read about your mum's passing, there is nothing I can add to the thoughts and comments already sent your way. Lots of hugs, take care and please remember someone will always be here if you need it. X
So very sorry to hear this sad news but glad that you were able to be there for her. My condolences to you and your family and thank you for passing on her thoughts to us all. Gentle virtual hugs, Janet xxx
So sorry to hear of your mothers death. I have followed your loving posts to help her. You gave her what she needed until the end. What a blessing you have been. From your words about her thoughtfulness, that virtue has flowed down to you. My best to you during this difficult time. 🤗
I'm sorry to hear that - You were with him beforehand though - that's what counts- you mustn't feel guilty - I still feel guilty about her and I was there, so I think those feelings just pop up--- you can let them go.
They were asking me if I wanted to leave and luckily I just stayed there- they gave me a comfy chair and pillow.
So sorry for your loss. I am so glad you had time with her and were able to be with her as she passed. It's a real gift to be with your parent at the end. She will live on in your heart and mind forever xxx
I am so sorry for your loss. Sounds like you had an amazing, caring and selfless mum to be thinking of others in her final hours. Thank you, and thank you to her. I hope you draw comfort from one another and from the fact that you were able to be with her at the end. No one replaces your mum, but she will live on inside of you and your memories of her. Take care and thank you for posting.
Thank you for taking the time to write about your mum's death. What an amazing lady and how proud you must be that she was your mum. To be thinking of others in her last hours is an indication of the mother that she was. It was good that you and your son were able to talk to her and as you say was lucid towards the end. My prayers and thoughts are with you as you naturally mourn your loss of a special mother and grandmother. Xx💐
Your grief must be so great, your heart so full of longing..., your mum so dearly loved you, she has been so brave... you have been so brave. Take peace in knowing that she is in peace. Hoping your days become gentle and your memories joyful.
So very sorry and sad to read this. Your Mum sounds like a wonderful selfless, strong lady .
Bless her, thinking of you and your family. Big hugs to you all
How incredibly sad. Your mum sounds a very brave lady indeed. How old was she ? Thank you for sharing and letting us all know to look for the signs. To be left blind is one of the worst things ever. You take care of yourself you sound a lovely daughter.
They diagnosed her too late, her sight had already started to go. Even though she saw several doctors, A&E and a neurologyst with textbook GCA symptoms months before. (It was Specsavers who diagnosed her and sent her immediately back to A&E) They put her on 60mg, she lost one eye then they discharged her with no warning about the other, still on 60mg her second eye began to go, within 9 days she was completely blind. Terrifying sequence of let downs.
I must mention how brave and resilient my mum was, she lived a full life without sight, kept very healthy and went out, kept her sense of humour, lots of audio books and podcasts, cooked, did her make up, learned new skills...
We are in North West England. Every nurse and doctor and paramedic I spoke to during my mum's stay in hospital I made sure knew more about GCA than they did before and most knew nothing.
What a very brave lady. I'm sure I wouldn't be like your mum. Just having the sight in one is is bad enough. The brain has to adjust.
You could complain about lack of care. It seems doctors just don't know the signs of Polymyalgia and Giant Cell Arteritis, mine didn't. My meningitis was missed, and I was presenting all the usual symptoms. Vomiting, stiff neck, etc etc...almost lost my life. Because I was going gar-gar from the bacteria attacking my brain, one doctor said I was having a nervous breakdown. This was down to an inner ear infection.....will they ever learn, doubt it !!
I just want to say thank you to everyone on here for your help, advice and support during the last year. We got none from my mum's GP practice or Rheumatologist - just the occasional sympathetic ear
Please accept my sympathies to you and your family on your loss. It is never easy to lose a loved one, especially your mum, but I hope you take comfort that your mum passed with dignity and serenity, and supported by the ones she loved.
What a lovely Mum and what a lovely tribute your entry is to her. My sincere congratulations on your loss. It is apparent that she will be sorely missed, but it is just as clear that she left you with so much that will be with you always.
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GCA and PMR 
