My mum is in a hospice - I'm struggling

End of life
1

Hi there,

I have just joined this forum as I am hoping to meet people who are going through/have been through a similar situation to me.

My mum, who is 60, was diagnosed with primary breast cancer in 2009, and despite chemotherapy, radiotherapy and surgery, was diagnosed in 2011 with advanced breast cancer (mets in her bones). She has had various treatments since then which stabilised the disease for quite a length of time, yet the progression of the disease has now taken over. She was admitted to hospital about 3 weeks ago due to a very traumatic bleed, was kept in for 10 days or so, and was moved to a hospice a couple of weeks ago.

Whilst this hospice (a Sue Ryder hospice) is incredible in its care for mum, and I could not have hoped for a better place for her to be in at this stage, the deterioration has all happened so quickly. Whilst she can be awake, completely lucid and pragmatic about what is happening, comfortable and content, she is often asleep, or confused, or suffering somehow – pain, agitation, fear, sadness. It is agony to watch, and I am so helpless. My brother and I are living here at the hospice, sleeping in a chair and a fold out bed in her room, helping to care for her round the clock, and just be with her through this. We did the same at the hospital, so it has been quite some time living in this weird bubble.

Although I am not alone, I am really, really starting to struggle. Nights are mostly unsettled to some degree, so sleep is snatched when possible, and broken. Sleep deprivation probably isn’t helping my feelings of anger, frustration and sadness, but I am getting more and more overwhelmed by the whole situation as days go by. I am losing my mum. She is still so young - she doesn’t want to leave us, and I don’t want her to leave us. She will miss out on so much that she has been looking forward to. She is the most amazing mum, she has been through so many terrible things throughout her life, and she doesn’t deserve this. I love her so, so much. My heart is breaking.

I have been reluctant to join this forum as I haven’t joined one before, but to be honest, I need all the help I can attempt to get at the moment.

Thank you
x

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Hi Louise,

A very warm welcome to our Online Community. This is not a site that people would ever wish to find themselves joining, but it is a really safe and supportive place where you can talk about what you’re going through.

I’m so sorry to hear that your amazing mum is in a hospice, and that she has deteriorated so quickly. It sounds as though you are your brother are doing such a lot to care for her and be with her, but you are feeling very overwhelmed. This is totally normal, as you are physically and mentally exhausted.

I hope that it helps even a tiny bit to be able to share your feelings here. There are many other members on the site who will understand, and hopefully some of them will be along shortly to add their own replies.

Have you had any contact with the family support team at the hospice? There is one at all Sue Ryder hospices, and they are really great at making sure the families of patients get the emotional and practical support they need.

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Thank you Priscilla. I have made contact with the family support team here today. I feel that will be a different kind of support to what I think I am hoping for here - I really hope there are others out there that can share their own experiences here x

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Hi Louise I’m so sorry to hear your mum is in hospice. I’m afraid I have not been able to read your complete post as I am having problems expanding the post with the ‘read more’ My husband was in hospice for a few days, the staff there were excellent, very friendly and helpful. It’s the emotional part that will be difficult for you and your brother as it’s never easy to see your loved one deteriorate, we always think our parents will always be around. I will be thinking of you and pray for you and your mum x

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Hi Louise,

Absolutely, that’s why this community is here - sometimes there’s nothing like talking to someone who ‘gets it’.

I’m glad to see you’ve had a supportive reply from Libby. There are lots of other members here who understand what you are going through. I’ve had a look and found a couple of other posts where people talk about their experiences of a parent being in a hospice - maybe you’d like to take a look at these:

https://support.sueryder.org/community/life-after-bereavement/life-without-dad
https://support.sueryder.org/community/life-after-bereavement/my-dad

Libby - I have emailed you regarding your problem clicking ‘read more’. If anybody comes across any technical issues on the site, please do email me on online.community@sueryder.org, and I’ll do my best to get them fixed.

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Hi Louise,

My Father in Law was diagnosed last Sunday (6th) with terminal lung cancer. Its been a whirlwind. He doesn’t want to die in hospital has been given weeks to a month to live and so hospital let him out Tuesday, he’s in his mid 70s but doesn’t want to leave either so I can feel the heartache you have. I’ve been trying to support where I can. My partner is feeling useless over this and not being able to help. We have 2 small kiddies and he’s playing with them and feeling guilty for having fun and laughing I see what he means, so hard that life goes on while your going through something so hard. We have struggled to get care in place at home but I think we may be getting somewhere today. We spent the day with him on Sat and found he was in and out of it and in pain. I can’t imagine how you and your brother have been coping.

Father in law was a great football fan and we have put in place a last game for him to go to next Saturday I am just hoping he is still half well enough to go as its something a number of his family members are hoping to go with him to.

He’s on dialysis and has to keep going to that but has been told he can choose when to stop going, when it gets to much and at that point he will have a week probably at max left. I’m dreading that call but at the same time glad he has a bit of a choice (hope that makes sense).

My grandma also died of breast cancer a number of years ago - my mum was her main carer and I remember seeing her slowly disappear. Its so horrid to watch of someone you care for so much.

Hope your OK.

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Thank you so much for replying Libby and Sazzle80. I am so sorry you went through/are going through the pain. It is so hard isn’t it? I’m sorry to say my mum passed away on Saturday. I was holding her hand and telling her how loved she was and how she was not alone. It was very peaceful, and am comforted by that. The next few months are going to be very testing, I am sure. Hope you’re doing ok xx

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So sorry for your loss hun but I’m really glad it was a peaceful one. Xx

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Louise I am so sorry about your mum, but pleased it was peaceful and you were with her, that must have been very comforting for her. The next couple of weeks or so will probably be a blur trying to get things sorted and the next few months will definitely be very hard for you but please be assured we will all be here for you anytime you want a chat. Take care xx

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Thank you both of you xxx

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Hello Louise, I am really sorry that your Mum has passed away. Even though she had been ill since 2009, and had gone through many treatments, I expect it was still very hard for you to sit with her on Saturday during her final moments. Before she died, you said you were experiencing many emotions, including anger, frustration and sadness. I am afraid that even though you are comforted by knowing that she died peacefully, you will now face going through a mixture of feelings. I hope that it will help you to know that you did everything you could for your mother, including sleeping at the hospice so that she didn’t feel alone. Please just try and take one day at a time - it sounds as if you are a strong lady, but I think you may find it helpful to talk to someone from the hospice bereavement support team. I will be thinking of you.

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Hi Jackie, thank you for your reply. I know you are right. I’m dreading the next few months to be honest. One day at a time is the only way xx

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Hi Louise, I’ve just read your messages and I am so sorry to hear that your mum has passed away. It is so hard isn’t it. My mum died shortly after diagnosis, so we had the added shock of that too. It is an incredibly sad time but a tiny crumb of comfort can help by doing something positive,light a candle, frame a funny photo of mum, plant a tree, I even bought a beautiful star for the Christmas tree and planted some bulbs in the garden. She will always be with you.
I found it hard giving her things to the Sue Ryder Shop but knew it was for a great cause that she always supported, and memories are the treasure, not the objects.
Do take care and be very gentle with yourself.

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Hi Jeannie,

Thanks for your lovely message to Louise. It sounds as though you found some lovely and meaningful ways to remember your mum.

I see from your profile and older posts that you are also a widow. I’m very sorry for your losses.

You may be interested to know that we had a recent discussion here about coping at Christmas time when you have lost someone. This included posts from Libby, Lois and Ev, who are also widows. If you feel it might help you to read about their experiences, you can see the conversation here: https://support.sueryder.org/community/general-chat/christmas-coming-how-are-you-coping

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Thank you for your message Jeannie and for sharing your advice xx I’m so sorry for your loss. Your mum dying shortly after diagnosis must have been so hard, like you say, with the added shock. With my mum, it was expected for quite a long time, but she was relatively well until the last 4 weeks - it seemed to all happen so quickly at that point, even though we knew it would happen one day, I thought it would be much more gradual. I can’t get my head around the finality of it, even though I’ve had so long during her illness to try to xx

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Hi Sazzle,

How is your father-in-law doing? Did he manage to get to that football match on Saturday?

Thinking of you and your family.

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Hi Louise,

I am so very sorry for your loss and the traumatic time you have suffered. I read your story with tears in my eyes and fully understand what you are going through. My dear Dad passed away peacefully on 8/6/15 having been diagnosed with pancreatic cancer only five weeks earlier. The feelings of helplessness were horrendous and he too did not want to leave us. The only thing that keeps me going is knowing how cross he would be knowing that we were all feeling so sad. I try and pull myself through each day but it is difficult. Feelings change as the months pass but hold on to the fact that you did your very best for your darling Mum and that she has finally found peace. She will always be in your hearts and all those special memories that you have. Take care of yourself and be kind to yourself - it is early days. Much love and prayers to you. xx

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Hi CoCo15,

Thanks very much for taking the time to share your experience and support with Louise and the other members in this conversation.

I’m so sorry to read that your dear dad passed away in June - it sounds as though it all happened very quickly and must have been a huge shock. It is to be expected that you are still finding things difficult.

I hope that it helps a little bit to be able to share how you feel on this site - as you can see, there are others here who really do understand. Feel free to start a new conversation yourself if there’s anything in particular you’d like to talk about, or just to give us an update on how you are doing.

If you need some more support, you can also give the Cruse Bereavement Helpline a ring
0844 477 9400 or email. helpline@cruse.org.uk. If your dad was cared for in a hospice, these often also offer bereavement support for family members.

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Thank you so much for taking the time and trouble to respond. Yes it does help to talk and know that others understand but it still hurts like crazy. Dad was in a local hospice and we have been offered bereavement support, which I am considering. Thanks so much for caring xx

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Hello CoCo 15, I am a bereavement support volunteer with a Sue Ryder hospice, and thought it might help if I send you a few words. Although it is now 7 months since your dear Dad died, it is clear how painful you are finding your great loss. As you say, it can be helpful to talk about what you are going through, so I’m sure that you would definitely benefit from arranging to see someone from your local hospice support team. Whatever you decide to do, I wish you well and I’ll be thinking of you. Regards, Jackie