Hi,
This is difficult for me as I do not normally open up to strangers or indeed people close to me - I always like to seem strong and capable however this is so far from how I am feeling right now that I decided to join this forum.
My mum has incurable metastatic breast cancer. She was diagnosed in April 2018 and 3 days after this diagnosis she suffered a stroke which left her with speech and memory problems. I have been working from home (in a job I hate) so that I was able to support her since then. Until August 2020, her cancer had been controlled by hormone therapy however a scan at this point showed that this therapy was no longer working, that the cancer had spread and there was no more could be done. She was referred to the palliative care team and told to get her affairs in order. To say I was totally devastated doesn't come close to describing how I felt at this point. I am single and my mum has always been my best friend and the one person I can truly rely on. My dad died 20 years ago and although I have a brother, we are not close and he has not been any support to my mum or me in the past 2 years, he was the same when my dad died. I cannot imagine how my life will be without her and I feel overwhelmed and panic stricken just thinking about it. I have been off work since August and moved in with her to help her and spend as much time with her as I can while I can. In October she developed a malignant pleural effusion and was admitted to hospital to have it drained. This turned out to be a horrendous time - due to COVID restrictions I could not visit her and the day she was due to come home I went up to the ward to be told that she had tested positive for COVID after someone else was admitted to her ward with it. She was admitted to a COVID ward and I thought that I would never see her again. I cannot adequately describe the torture I endured thinking that she was going to die alone in hospital. Amazingly though after 3 weeks she was discharged home and I managed with the help of the palliative care team to set up home oxygen. The GP advised at this point that she probably only had days to live but I was just so grateful to have her home where I could be with her. So it is now January and she is still here. She is bedridden and I am giving her oral morphine to control pain and breathlessness. She hardly eats anything and has lost so much weight that I can now lift her in and out of bed easily. I feel so alone and isolated and I am terrified that I won't be able to cope with what's to come. I have district nurse support but due to COVID this is mainly by telephone. I have friends who are supportive but again due to COVID restrictions I cannot see them and I think that unless you have experienced this you cannot truly understand how it feels! I sleep in the room with her so I cannot remember that last time I had a full night's sleep. I am exhausted, emotional and just at the end of my tether. I know that I have to look after myself but it is so difficult when my mum needs so much care. Every night I think that she may die and I just cannot take much more of this emotional trauma. I have been looking after her for so long now and I cannot bear to see her so frail and unwell. Today has been particularly awful as she has just been crying and groaning in distress and I feel so helpless! This is so unlike her as she has always been the strongest and most positive person I know. I find myself wishing that it was over and then I am wracked with guilt for thinking this.
So basically I am an emotional wreck just now. I know that no one can help us and I'm sorry if I've been rambling on but I just thought it might help to share my feelings. I know that there will be many other people going through similarly awful situations with loved ones right now and so sadly can probably relate to what I'm saying. xx
Hi Tired01,
How very brave of you to open up here to strangers, and share your experience. I am truly sorry that your Mum has been given this diagnosis and is now finding it difficult and uncomfortable to cope. With everything you are both going through, there is no wonder you are emotionally drained; continued lack of sleep, anxiety and stress will take its toll on the strongest of people.
There are a couple of blogs that have been put together by our Macmillan team here Supporting yourself blog and Part Two which have links and ideas to ensure that you are taking care of you whilst helping your Mum in every way you can.
The Carers Only forum or Family and Friends are also great areas of support.....it is difficult to reach out to strangers, but now you have navigated that extremely difficult first step I hope you will make use of these other forums, where you will find experience, understanding and support if that would help.
I don't know that there is anything that I can say that can ease your mind, you are experiencing as you say an awful situation, and although some of your thoughts rack you with guilt, I wanted to assure you, they are not unusual. You see Mum suffer and you do not want it to be so, you don't want the alternative either, yet seeing her in pain, so frail and unwell is unbearable. Try not to be so hard on yourself, you are doing everything you can, she knows this... (((Hugs)))
You didn't ramble, you released, May your night allow you some sleep now.
Take care of you.
Lowe'
