I don’t really know where to start with this,but i will try…My Mum passed away in May this year.Mum was diagnosed with Alzheimers back in 2016,as the illness progressed i gave up my job to become Mum’s full time carer.Due to the nature of Mum’s illness for the last 3 1/2 years we were together more or less 24/7.I had to move into Mum’s bedroom as she lost her balance completely so needed help to get out of bed and use the toilet safely.This could be anywhere between 2 to 10 times a night.Although it was a struggle at times we always managed to cope and thankfully we never lost Mum completely to the illness and Mum still had the “essence” of Mum.She always remained happy and content,which i was told by the paliative care nurse was down to the care that i gave Mum.I can honestly say hand on heart that there wasn’t once during that time that i didn’t put Mum’s needs first.I fought the system and all of the red tape for her and would not give an inch where Mum was concerned…Although this probably made things more difficult for me i am so glad that i did do it that way because at least now i have nothing to reproach myself about.The down side of this is now that Mum has sadly passed i feel like i have lost everything in one fail swoop and my whole world has been turned upside down.I have no job,no income and no reason really to get out of bed in the morning (although i do).I just feel like my whole reason for being has gone.I miss Mum so much that i can’t even begin to explain to you,Not only have i lost my Mum but i also lost my best friend,my side kick and the most genuine person that i have ever known.I am still in tears most days and i just don’t know how to try and move on (as Mum would want me to).
Hello Alan,
I’m so sorry to hear about the loss of your beloved Mum. Alzheimer’s is a very cruel illness, but the care and support you gave your Mum would have made the progression of it less traumatic for her. You will obviously feel at a loss, she was your Mum.
I’m glad that you’ve been able to share how you are feeling here, and I hope that you find the community a good source of support. Everyone here has experienced the loss of a loved one and will understand some of what you are going through.
Sue Ryder offers an online bereavement counselling service. This is a free service and sessions are held via video chat so you can attend from home. There’s more information about this service here: www.sueryder.org/counselling
Another good place to get support is Cruse Bereavement they offer a helpline, email support, and counselling and support groups through their local services: 0808 808 1677, helpline@cruse.org.uk, http://www.cruse.org.uk/bereavement-services.
Take care,
Audrey
Online Community team
I am so sorry for you loss Alan. I lost my mom on Monday and although she did not have dementia she was very frail and infirm and I helped cared for her. With the help of my husband and carers I was able to work part time. I have lived with her all my life the last 28 years my husband has been here too. I understand the huge void that there is now in your life. We feel it too…take care of yourself. Sarah x
Thank you Audrey.I hope that i will receive some useful advice from people who have gone through what i am going through.
Thank you Sarah.I am sorry for your loss as well.Although Mum had Alzheimers she never forgot who we were.This was proved to me shortly before Mum passed away.That is another thing that i will be eternally grateful for.Mum had fought and won so many battles over the last few years that it never occured to me that when Mum was admitted to hospital this last time that she wouldn’t be coming home.In fact Mum was supposed to be coming home but sadly she had a relapse the next day and never recovered from it.Mum being Mum fought until the end.the doctors didn’t expect Mum to survive the Thursday night but Mum hung on until Sunday afternoon.There was no pain and Mum quitely slipped away with me holding her hand,stroking her hair and telling her how much we all loved her.Mum was just too tired to fight anymore.As i said previously i just feel at a complete loss as to how to try and move forward with my life.I won’t ever get over losing Mum but maybe in time i will learn to live with it.My life is just so empty without Mum in it.She was such a special lady.
Hi Alan, I am so sorry for the loss of your mum. What you did went beyond what most people would do when it comes to looking after their parent - you gave up everything to make your mum the focus of your life. What a wonderful son you are, and how proud your mum must have been, it must have been so comforting for her to have you there with her as she had to live with her dementia.
As you say, you can be proud of yourself, and have no regrets about doing more, but now the new life you took on when you decided to become her carer, has gone. The emptiness without her must be terrible. It must be so daunting to think how to start again.
Do you have any family that might help you through this difficult time? Any really good friends? You always have us here, but if you have someone in your life too, it might help.
I am so sorry, I can hear the desperation in your post. What a wonderful son to care for your mum so selflessly and devoted. You are a credit to her and should be so proud of yourself. Well done, really well done.
It sounds like you would benefit a great deal from some bereavement counselling. I think most hospitals have that available to you.
Also I am reading a book called, It’s ok to not be ok, by Megan Devine. I am pre grieving for my terminally ill mum, trying to prepare myself, tho I guess no amount of prep is going to prepare me for the devastation of what’s to come.
I hope you are ok and look after yourself x
Thank you Abdullah for your kind words.You are so tight when you say that it must be daunting to think how to start again.The problem is that i don’t want to start again ,all i want is to have my old life back with Mum in it.I know of course that isn’t going to happen but it doesn’t stop me wanting it.Everything is made worse by what is going on outside in this crazy world at the moment.I am just so lonely now that Mum is no longer here.You asked about family,yes,i do have family, but they live a couple of hours drive away so we can’t just pop round on the spur of the moment to see each other.It really shook me when Mum passed away because every other time that Mum had been in hospital she had come home and it never occurred to me that she wouldn’t do so this time…Even when Mum relapsed and the doctor told us that "sorry,but your Mum won’t come through this,here was still a little part of me that thought “you don’t know my Mum” because Mum had proved them wrong so many times.I guess that sadly this time Mum was just to tired to fight anymore although she did still stay with us longer than they thought she would.I just miss everything about Mum not being here.I miss her cheeky smile,her company as we did everything together and i just simply miss the essence of Mum and also i suppose i miss looking after her.What ever happens in the future i know that my life will never be the same again now that Mum is no longer in it
Thank you for your kind words.I am receiving bereavement counselling of sorts,it is over the phone and to be honest, whilst it is good to talk to somebody, it isn’t that different to talking to one of my friends.I think that i might benefit more from face to face counselling.I don’t know if they have started doing that again yet ?? I know that something like a part time job would help me as i have nothing to fill my empty days now,I have gone from something that was all consuming 24/7 to absolutely nothing.I can tell you in advance what tomorrow will be like,exactly the same as today…full of nothing…just hours to try and get through until i go to bed to wake up and do exactly the same once again.I don’t feel like i am living at this moment i feel like i am merely existing.I can now go for days on end without seeing anybody and i hate the loneliness.
Dear Alan,
How blessed your mum was to have you! My husband has been working as a carer in the community for 20 years and he rarely sees that sort of commitment from family members.
In recent years I lost both my parents and I can relate to what yo write about having to fight the system for her to make sure she received the care she needed.
I totally understand how you must be at a loss at the moment, because your whole life was centered around her needs. She must have been so proud of you and I am sure she would want you to think about your own needs now and allow yourself to grieve but also to rebuild your life.
You are obviously someone who has a lot to give. I dont know what job you used to do, but have you thought about maybe looking into opportunities to do for others what you did for your mum, either as a job or as a volunteer? It may give a new purpose to your life.
Jo
Thanks Jo.Funnily enough quite a few people have suggested to me that i should think of become a carer as a job but i don’t know if i could cope with that.I would be fighting the system the whole time and i think that i wouldn’t be able to distance myself enough emotionally…One thing that has disappointed me since Mum’s passing is that not one of Mum’s carers has been in touch.We only had them in the last 5 or 6 months,just once a day to help Mum get washed and dressed but they all seemed to think the world of Mum,as did everybody that met her,and yet since Mum’s passing i haven’t heard from one of them Ii am not annoyed but just disappointed as i thought that Mum was more than just another client to them.
Hi Alan, it is the worst feeling in the world to know that the person you loved most will never be a part of yuor life again for the rest of your life. You will never move on from the loss of your beloved mum, her loss will become a part of your life and define who you are, what you need to try and work out is how you can start living a life where you are able to get some sort of “normality”, where thinking about your mum brings happy memories and some joy, and not the intense grief and loneliness that you currently feel. It is very difficult to know how to do this, if it was easy to do than none of us would be on this website.
Do you have any neighbours who can talk to you? I am fortunate that I live in a house share, where the landlord has converted a large Edwardian detached home into many rooms and studios, and so there is a woman in her 30s and a guy in his 50s who live on the ground floor who I can go and have a chat with every day. That 15-30 minute break really helps my loneliness. Do you have any neighbours who you can go and talk to? Maybe a break of 15-30 minutes might help you. Some days the only thing that helps me cope is that I know I will be able to go and talk to the woman when she is back from work at Sainsburys. Just that 15-30 minute of human interaction can help make the day bearable, because there isn’t anything worse than when you spend the whole day at home without talking to anyone.
At least you have found this place. Coming here can help a lot too - you might not have people who you can talk to in real life, but at least you can share what you are going through here. There are other people in a similar situation to you - one lady, @Meebee, has also experienced loneliness after her mother died, like you, she writes such detailed responses to help people, I am sure she will write one to you too when she gets the time, to be honest, it is amazing how she finds the strength to help others with such detailed replies when she herself is going through such terrible grief.
I can understand how you feel, but the fact that you did not hear from then again does not necessarily mean that they did not care about your mum or that she was special to them. Most care workers will have clear guidelines on what they can and cannot do, for example they are not to give out their contact details to people they look after or their families, and they should only do the jobs they have been assigned to do. They may see as many as 20 or more different people in a week and for their own protection they have to keep their personal life separate from their professional life. My husband usually drops off a card and if he has looked after someone for a long time he will try to attend the funeral if his company has been given the details by the family to pass on to the carers.
Jo.
Hi Abdullah.I went and had a cup of tea and a chat this afternoon with a neighbour/friend and yes you are right it does make a difference.I feel that i would be imposing on other people’s lives though if it were to happen as often as i would like it to.As much as people mean well they are not going to be around for ever as they have their own families and their own lives.One thing is for sure and that is that our family will never be the same again as Mum was the glue that held our family together.I didn’t know that it was possible to hurt this much !!!
This is why i am uncertain as to whether i could become a carer as a profession because i don’t think that i would be able to distance myself and i would probably get too emotionally involved.I wouldn’t be able to just walk away without saying anything to the family if the person that i was caring for passed away.
I am so sorry to hear of your loss. I too lost my mother end of July -similar circumstances - I helped with her care in the last months. I feel where you are coming from, I have no job no mum either and am struggling with finding any kind of foundation.to carry on. I went for a part time job and didn’t get it recently. The job meant more to me in more ways than one to help give me some direction. I have a 10 year old boy and cannot grieve as I would wish as he needs me. It is so hard.
It is comforting albeit an awful reason to connect, to know that others such as you are feeling the same.
Try and be kind to yourself there is no rush.
Hi Alan, I am so sorry that I did not reply to your post, sometimes I intend to reply later but then forget. Yes, I know what you mean that you feel you would be inposing on other people’s lives if you went around too often, it is a difficult situation, I just hope you’re able to get out enough and talk to people to help you cope with your grief, there will always be us at this site for you but some actual intercation with people always helps. How are you coping right now?
Hi Abigail.
I fully understand the need to get a job.It is something to try and help fill the huge void that has been left by out Mum’s passing.I know from my own experience that on the days when i do have something to occupy my time then things aren’t quite as bad,but of course it all comes rushing back once you have finished what you are doing…I am still i tears every fay but i try to keep going because i know that is what my Mum wants me to do but as you said it is so hard,I just miss Mum so much.We did everything together and i have lost my best friend and my side kick in life.
Hi Abdullah.
I understand that completely so don’t worry about it,i am always forgetting to do something that i meant to have done.I have seen some of my friends a little bit more but it’s not made any easier by what is going on outside at this moment.I still miss Mum every minute of every day and just nothing i do now is the same without Mum here.I feel my life at this moment is just like “groundhog” fay.I don’t feel like i am living ,more like i am just existing but hopefully this will change in time.
Reading this sounds so much like my own storry.I also gave up my job to look after my mum who had stomach cancer. Sadly she passed away in February. I spent the last week of her life with her and stayed with her when she was moved to local hospice. I also called her my side kick we were so close . My mum.told me to get on with my life and not to grieve
And be happy. Its so hard isn’t it. All that you are feeling is natural. I feel at a loss just now Feel lonely even though i have family all around. It is okay to cry . If you need to talk more please message back. Take care