Hello im new here and read posts but not contributed before. Apologies now this will be an epic post. I lost my mum (my friend, confidant, soul mate) 4 weeks ago after a long fight with dementia. I cared for her with “some” help from carers at mums home for 6 years. At time I worked 2 jobs, had 2 kids at home and husband so had plenty of balls to juggle. Got to stage when mum wasnt getting up, eating or drinking and after a fall downstairs where she broke 7 bones in body ended up in hospital for 6 weeks then into respite care. Home was horrendous and had to get her out of there. we made her home into downstairs living only. After a year with carers “help” she contracted sepsis so another stay in hospital and respite. This time I realised I could not keep mum safe or well and the horrendous decision to put her into care happened. She was there 4 years with me going in everyday to keep finger on pulse. Numerous problems in care home but knew she was safe and monitored. Anyway mum died 4 weeks ago, after 10 years fighting this insiduous disease called dementia. Mum was determined, a fighter but dementia was stronger. My dad died when he was 50 so it had just been me and bro for years making sure mum was ok. At minute im numb. I have cried bucket fulls over years when dementia took mum bit by bit. Cried when mum died but nothing since. Im a pisces and an expert crier so awaiting dam to burst. Feel like am totally disconnected with everything. Such an awful feeling. Cant see me ever coming to terms with mum dying. Would be grateful any tips to get me through this horrible nightmare.
Hi Dotty62,
I’m not sure I have any tips, but I do know that sometimes just being around people you know & who know & understand you can help. Even if no talking is done, sometimes just being in another’s presence helps to not feeling alone going through this.
Sorry to see everything that you’ve gone through. I was interested to read the part about waiting for the damn to burst. I lost my mum on 21 Jan. She died as a result of an accident & we haven’t even had a funeral yet, so feel in limbo. Like you, I cried a lot & now I seem weirdly ‘normal’ & hardly cry. I wondered if something was wrong with me. But then I found when meeting two different friends recently (each on different days) I was saying the same words where with one I’m perfectly fine. I was able to talk without crying or getting chocked up. Then the other, same words & I had difficulty getting a full sentence out.
Grief is weird, raw, difficult & everything in between. We just need to remember to take time for ourselves too, & be around those we know truly care for us & get the biggest hugs from them that we possibly can. For me, a hug without words is enough to squeeze out the tears that need to flow.
Virtual big hug coming your way. 
So very sorry for your loss.
After reading your post I so feel sad for you.
If ever someone deserved peace your mum did.
Everything I begin to write sounds trival!
I hope you can take a bit of comfort knowing you did your best you could for her.
I am sure there will be someone on here who can share your story. And hopefully guide you through.
Sending love and gentle hugs xx
Hi Dotty62,
I am so sorry for your loss. I lost my husband 2 and half yrs ago. You sound like you are in shock right now but the tears will come and you have to ride the wave unfortunately…
We have a similar story, my dad died at 47 and my mum is in a care home with dementia. She has been in there for 3 and 1/2 years. A care home is not where you want them to be. My mum received bruises where the paramedics reported it to the safeguarding team. CQC were involved apparently. I got in touch with the police, who didn’t want to know. I got in touch with the CQC who never got in touch with me. After all the investigations that went on the answer was ..we don’t know how she got them… so nothing happened. Unbelievable. Thats the care home system for you. Don’t care.
I understand what you have dealt with looking after your mum all these years. Its not easy but you do it because you love them and care for them and want them to feel safe. Which you have done well. My husband died of cancer due to delayed diagnosis and treatment by my local hospital. So we knew he was going to die. So you deal with an anticipating grief. And that is what you go through with dementia too. You know its coming and as you lose them gradually you come to terms with each change.
Im not sure if i sound like I’m rambling. I hope it makes sense somehow.
You loved your mum and you cared for her. Xx
hough different but one of the hardeat thing using a care house to look after our loved ones is just another torture.
I would stay with him.all day. Happy to do his care that was lacking. But as the disease got worse I couldn’t stand leaving him so I got a camper bed and moved in. I never asked permission and they didn’t try to stop me, as they knew they couldn’t give the care he needed., he deserved He died in my arms after days of the hideous pain and loss of everything, the brain tumours take everything But he died with the most peaceful smile. Either he was seeing something or finally the pain had finally stopped.
We are left with all this!! But the biggest punch in the face is we are left without them!!
Hi Absent,
Yes caring for them when they are dying is such a hard, difficult time. Your head is so messed up. Sometimes I thought my head would explode, not knowing how to cope day by day.
We are left to try and put ourselves back together if we can. X
Yes and hardest part is actually doing it for ourselves now 
Thank you for your replies, im very grateful.
Finding this all overwhelming at min. It was mums funeral on 16 Feb . Mum hadnt made any plans for it. I didnt know what she would want so just had to wing it and did what i thought she would like. Whether or not she did ill never know. I managed to get through it ok albeit in a daze, but held it together for sake of daughter, son and brother. The guilt is immense surrounding mums illness and her dying.
I wasnt there when mum died. I thought it would destroy me seeing her go (forever had anticipatory grief of mum dying and was so scared) I said all I the loving things wanted to say and if she wanted to go it was ok to go get better and that me and brother would be ok. I went for a coffee with brother as he was in bits. 40 mins later she was gone. I wish I had the guts to have stayed with her. My mum had been there with me throughout everything nd yet I couldnt be there with her when she died. Ill never forgive myself for being so spineless.
Throughout the 10 years of mum riding the dreaded dementia rollercoaster , ive been with her. Its not an easy ride but mums ride is now at an end and I only hope she is at peace and free of that rotten dementia. Me I dont know how im feeling , cant put it into words but NUMB sums it up . Cant say ill ever be the same again but maybe if I have half of mums determination it might get easier in time. Who knows. Everything about dementia is insiduous,. the illness itself is hard enough to cope with not only for sufferers but dealing with drs, hospitals, social workers, finance, carers, care homes you have to be a tough nut not to crack and unfortunately im not a tough nut.. so everyone going through this too you have my heartfelt sympathies.
You were not spineless. You were supporting your brother because he was in bits; you told your mum she could go as you & your brother would be okay. Something a friend told me about when her mum died through long term illness was that her mum wanted to go on her terms. So when my friend left the room for some fresh air, that was when her mum chose to let go. It’s what her mum wanted. I believe that’s what your mum did too. Not to make you feel sad, bad or anything, but to release you from a heavy burden & get you on the path to grieve, process & recover in your way for you to move on & live again.
You probably wanted to stay but was exhausted by it all & you were looking after your brother’s emotions too. That’s a lot to take on when you have your own to deal with as well. Maybe your mum felt it was okay for her to go while you were away, rather than putting you through anymore.
That’s why grief is hard to understand & navigate at times. You feel bad for not being there when she passed, but you would still feel bad if you had been there because she had passed.
I couldn’t be with my mum when she passed because of the anger my brother has towards me because of the accident that put her in hospital. I didn’t want the negative energy to be around her at that time when the tube was removed, & she faded away a couple hours later. I had to say my ‘see you when I see you’s’ to mum the day before. That does make me sad, but more for mum than me because I believe she knew how my brother was treating me & it’s not something she would’ve wanted. She would’ve been the first to say it wasn’t my fault & pull him up on it.
Your mum knows everything you did, including being there for your brother. It’s easy for strangers to say you weren’t spineless, but we can at times be our own worst critics. Go easy on yourself. You did the best you could with the time you had & I’m sure your mum knew this.
Big hugs
Thank you for your lovely reply.
Today was a hard day. From not crying ive had a few good old crying bouts. I got some of mums ashes made into a cuddle stone which i got today and which opened the flood gates. Could hardly breathe through the crying and when I opened my bedside drawer for a hanky (im a hanky sort ..tissues just ruin my nose) there was a white feather. Ive read its loved ones saying they are happy and at peace and things will be ok. I so hope and pray mum is well and still looking over us. A bit of comfort in dark times . Didnt stop more tears though.
Signs - I believe in them too. White feather - another small step forward for you on Grief Road to somewhere less painful where there is beauty in the memories of your mum. 
(corny, I know).
When I get some of my mums ashes, I’m getting myself a keepsake too.
Stay strong. We’re all here for you.
Dotty, I am very sorry that your mom died, I lost my mom too and it is Earth shattering. Also, a long illness. I lost my husband 17 months ago after a lengthy illness as well.
I started grieving on the day of diagnosis. I watched them both fade away slowly. I cried like mad in the beginning, then stopped. I cried the day my husband died, the day before, and of, his funeral and not since.
Honestly, my first reaction was, “no more pain, no more suffering, no more misery, they are free of it all”. Then, the tears came with the reality of the loss and soon, no more tears. But, both were expected, it was a matter of when.
I personally think it is okay to not be in a puddle of tears.
Your mom was one blessed woman to have a daughter as devoted as you. We all hope that should we become dependent that someone who loves us takes care of us and not just the paid help in a home. You honored your mother and sacrificed much to see to her care. It was hard, I know.
Now, it is even okay to relax a bit. The 24/7/365 worry is over. It is okay to feel relieved of pressure and anxiety. You deserve it. Your mission is over, good and faithful daughter, rest your heart.
Love
Peaches
Thank you all for such lovely replies
I know is early days as mum only been gone 4 wks, and have to take baby steps probably for a long time. I feel raw and empty. My purpose in life has gone . Not only were me and mum joined at hip, my best friend, i rode the dementia rollercoaster with her for 10 years. I feel lost now, interest in life is minus nil. Ive a lovely hubby and 2 good kids, but it just doesnt seem enough. Thats awful to say I know but mum was the light in my life which has been turned off. I know ive memories and mostly good ones , pre dementia…but dont want memories I want her.
Your purpose is to continue to raise your family and see grandchildren and maybe even great grandchildren. Your mother’s job here was done. She taught you so much about life in the last years and about yourself.
You are in shock and grieving so many lost years. It is normal.
It made me feel old and orphaned at the same time when my mother died.
This too shall pass. Give yourself time to grieve and get some rest. You’ve worn yourself out for years.
Love,
Peaches
Peaches you are a lovely soul and thanks for replying.
When youve loved someone for so long and they are taken away you wonder why…why was i born to be loved , cherished, nurtured etc nd then wham a long ride on dementia rollercoaster and then they are gone and your left with a huge void never to be filled again like you want. Cant get head round that or anything. Just living in a daze trying to do things but not interested. My mind is just filled with mum . I know its early days and im trying my best. My mum was so determined. Her mantra was “ i must, i can and i will”. If i had even half her determination i think i would be a bit better than i am. Hopefully in months to come i can assemble my shattered peices together and feel a bit less robotic. My hubby and kids were so close to mum too so they are suffering too but not in same way as me or brother. Im Trying to be strong for them all. What i really want to is just hibernate and pretend none of this has happened
Dear Dotty,
I am so very sorry for your loss. It sounds like you had a very special relationship with your mom. It also sounds like you were an incredible advocate for her throughout her dementia. I can’t even imagine the pain of seeing a loved one experiencing dementia and the various losses that that must have brought with it. I picked up on your words around tears and the absence of them.
I lost my dad very recently and am still discovering and learning about the nature of grief. I was incredibly close to my dad. There is no real guide book - that much I know. I’m also learning that there is no rhyme or reason to grief either. Whatever you feel is unique to you and it will all unravel in its own way. It sounds like you have experienced alot of pain during this time, and the mind works wonders in filtering that out slowly to allow you to keep going. Be kind to yourself and I am sure those tears will come in their own time. There are no rules for when that might be and who you will shed those tears with. Thinking of you.
It’s such a cruel illness dementia is. The only thing it gives is that you pause and reli appreciate that person as you know at some point they will pass. But this does also give anticipation grief along the way. By the end I forgot who the true her was. It’s so sad what it does to them and there family. You feel all sorts of emotions happiness when they gave a better day.sadness when you see them struggle to guilt frustration and depression. Or even feeling unwell yourself as it’s so stressful. As it progresses you long for the previous stage which was already hard. I spent nearly everyday with her and what I would give for another day.
I lost my nan who was my everything. I miss her so much she was so amazing oh she tried to fight her illness. She remembered me till the end of the illness and will love each other forever
Well its 3 months down the line from loosing my lovely mum… how ive got this far I really dont know ! Gone from that surreal / numbness feeling to slightly less numb but muddled. Ive still not cried lots (unusual for me). So still waiting for a deluge of tears. I feel so different though, what was once important to me are piffling trivial things now, just go with flow now which I certainly didnt before. So strange. Im getting some talking therapies next week so will see how that goes. I still dither though ..i.e mams ashes. No idea what i wanted to do with them but just last week ive decided to scatter them in same place dad was 40 years ago. I kept a small packet of ashes and getting them made into a diamond. They extract carbon from ashes and grow a diamond. A long process but they said we are all carbon, diamonds, stars so all connected. So i feel a bit better knowing a bit of my mum is a diamond…which she was. Would rather have here here with me though, but maybe the rest of ber ashes has gone to make a new star. Who knows but a lovely thought when you look up into night sky and see them twinkling. 