About grrlboiwonder

grrlboiwonder

Thank you Margaret for your response and advice.

grrlboiwonder

I am reaching out to anyone with a family member at home with terminal cancer. My grandmother was admitted to hospital over three weeks ago after she started spiking a fever, becoming confused and shakey. The plan is for her to return home as overall she is stable despite ups and downs throughout each day. I will be glad to have her home as I've been staying overnight and most of the day, however I am also very anxious to not have the current support from medical staff we're receiving in hospital. It sounds like equipment will be hired to make her more cofortable, the local palliative care team will be visiting, and perhaps RDNS. I am still feeling unprepared, especially when the oncologist is saying that I will be unable to cope. While in hospital there have been mixed responses to her needs, ranging from she is 92 and in the final stages of death, to reassuring she would recover from radiotherapy poisoning and be coming home. It's been a rollercoaster time, depending on the time of day and what medical staff or specialists come by. I've felt anger when I've needed to step in and remind staff about her medication, dietry needs, challenge their assumptions of her abilities, assist her to the toilet or advocate for medical treatment. In addition I am now the person to try and access assistance and coordinate with various services to prepare for her discharge. Has anyone else experienced this kind of frustration within a private hospital setting? What I would like to know from anyone who has or is caring for someone at home with terminal cancer is what kind of help have you accessed and what other things should I be thinking about?

grrlboiwonder

Dear Juliewho - this is our chance, as forum users here to send our thoughts out to you and your family. There is no expectation for you to reply, but I hope people's messages here will help you when or if you need extra support Xx

grrlboiwonder

You were in my thoughts today as I logged back in here after a while. How is everything going?

grrlboiwonder

Hi Juliewho, and to everyone else who reads and replies to this thread. I am caring for my 92yo grandmother, so while it isn't a partner/husband I connect with the sense of isolation and anticipatory grief. She has been looking after me since I was six-weeks old and we've never lived apart. Each day is a rollercoaster, and like you I spent my time trying to stay busy, however just stopping for too long brings up too much anxiety. She has okay days where she might get up for an hour or two and we get to chat, but the last week she's lost more weight and has no interest in food. I am thankful for being at home with her, however I am no longer a grandchild but more a carer/nurse. I miss our quality time together as she sleeps most of the day and likes to be alone in her room. I try to be strong but sometimes I wish for comfort from her, which she can no loger give. I feel like I am already living alone, and I feel like she is not able to fight to eat or recover from radiotherapy (it's only been two-weeks since she finished). Friends are there, and I wonder if I am the only one who wants company but also wants to keep people away to spend what few moments I have in a day with my grandmother alone...? I hope these forums help us all feel less alone.

grrlboiwonder

Hi Alina, I am going through the same difficulty with my grandmother, however she hasn't undergone any treatment. She is a lot older than your Mum, she experiences fatigue doesn't want to continue doing the things she did (e.g. reading, crochet, her odd jobs around the house, writing letters etc.). She also stays in bed a lot more than she has in the past month, despite being almost 92 she was always up at 6am and would be busy until the evening when she went to bed. It sounds like you are doing all that you can, you are talking to her and supporting her, but I empathise that with not knowing what to say or how to cope with these states. It would be so hard and heartbreaking to see your Mum, a strong woman, loosing her enthusiasm and energy. As Emily said above your Mum may need to adjust and cope with everything the best/only way she knows how. I know how hard it is to see her so tired and lacking interest, I am also wondering what it is like for you? How do you feel about it and cope? I ask these questions because I know that I am struggling and not coping as well, which makes me feel frustrated and worried.

grrlboiwonder

Nello, how is your grandfather doing now? I wonder if he may be able to ask for or request a scan to find out what effect the radiotherapy has had? Things settled briefly and now it feels like we are back to deciding if radiotherapy is the right way to go. My grandmother is so tired the last few days that I feel treatment may exhaust her more. Then again it may be due to her lack of appetite and small meals, and not the cancer.

grrlboiwonder

Hi Kerri - I'm wondering how your treatment has been going for you? I'm so pleased to hear that you've been pleasantly surprised and overwhelmed with help and support. Hope you get to ask your questions and get the answers you need.

grrlboiwonder

Hello Shar92 - your post brought tears to my eyes but also a smile. I am wondering who else is on this journey/fight with you or if you feel you need more support? I'm a carer, not a sufferer, to someone with cancer, however the heartache and strength in battling this disease is something all of us on here are going through. Hope you find some connections on here and grab any support you feel you need.

grrlboiwonder

Thank you Anne. I think I am the one feeling it the most, however today my grandmother did say how strange it is that she feels so tired all the time. I don't know if this is the cancer, or if it's her reduced amount of food. I feel we are managing financially at the moment, however I will try to apply for a carer's payment/allowance. Thanks again for the message - it helps to hear from other people and feel less alone.

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