Help for caring at home

[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?  

[Margaret_CCNSW]

Dear grrlboiwonder,

It sounds like it has been a difficult time caring for your grandmother at home, particularly with the responsibility of coordinating her care. It's great that you have reached out to the Online Community for support and advice.

There are a few options that may be helpful for you at this time. The Cancer Council 131120 Information and Support line consultants are all health professionals who can discuss with you what supports are available in terms of coordinating your grandmother's care. You can speak with a 131120 consultant 9am-5pm Monday-Friday.

Additionally Cancer Council NSW facilitates a service in the form of a Telephone Support Group (TSG) for people such as yourself who are caring for someone with cancer. The TSG provides an opportunity to regularly talk with others in a similar situation so that experiences, information and coping strategies are shared. For more information please phone: 1300 755 632 (messages can be left) or you can email tsg@nswcc.org.au and include your contact number and we can call you.

Kind regards,

Margaret, from the Online Community team

[grrlboiwonder]

Thank you Margaret for your response and advice.