Am I doing the best for my Grandad

Toni Broken Granddaughter294bd5 12 hours ago

2 replies
22 subscribers
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Thank you in advance for any response.

My Grandad was given a terminal diagnosis last September 2024. Both grandparents didn't want to know timeframe as they want to take it day by day. Being the factual person I am, I had to ask. This was so we could look out for signs that may require urgent medical attention. Dr said he probably won't see Christmas 2025. But he's here still and I do believe this is because he isn't thinking about that timescale date.

To look at him in his chair you wouldn't think there sat an ill man. Sometimes I think I look worse than him

Being so close to him I notice everything. He's now eating very little compared to the 3 meals a day he'd have only a few months back. He's sleeping a lot, I have tried to explain to my Nan that he's tired from the internal fight in his body being that he had a lung and kidney removed due to the initial diagnosis of separate cancers and surgery to remove within 6 months of each other. His breathing has declined a lot too which wasn't the best to begin with as he has COPD. I know they're both not stupid so they most probably have an idea he's declining but don't want to say it out loud.

That leaves it as my job to seek advice and guidance when I notice these changes. My thoughts for both the breathing and eating issues is to contact his Macmillan nurses to discuss oxygen at home and ensure drinks. I have some medical knowledge following various family illnesses which helps with making suggestions or asking questions for this. I've also been staying over at their house the past few weeks as I feel he's worried of something happening overnight and Nans on her own. I have no issue with this as I'm very close to them, the oldest grandchild and lived with them in my early years.

I'm sure others ask themselves these questions a lot so felt if I ask the community they could share with me their answers and experiences as you are or have been in these same shoes of mine:

Am I helping him by doing the above?
Am I doing enough?
What more should I be doing?
Seek the right help without actually telling them how bad it is?
Approach the DNR paperwork?
Stop wider family seeing my actions as being "overreacting" rather than helping and caring?
Stop caring what wider family think & their lack of help?

Any other questions you ask you ask yourselves and are happy to share too would be appreciated xx

latchbrook 11 hours ago

Hi Toni Broken Granddaughter294bd5 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community, and although I have no experience of looking after someone with incurable cancer, it sounds like you're doing a great job.

The online community is divided into different support groups so I'm going to recommend that you join the supporting someone with incurable cancer group as you'll then connect directly with others who are in the same situation as you.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and copy and paste your questions from here into your new post.

Sending virtual ((hugs))

"Never regret a day in your life, good days give you happiness, bad days give you experience"

eddiel 9 hours ago

Hi Toni, and another warm welcome from me, I have been where you are 2 times with family, and so many times in my 15 years in healthcare/palliative care, to answer your questions, your doing a wonderful job sweetheart in such difficult circumstances, your doing everything you can, and looking for advice is good aswell, my only concern is that it can be a little reactive, when being proactive would be better my friend, which comes with lots of experience. I must tell you I have a terminal diagnosis too. Can I suggest you call your GP and ask for a referral to your local hospice and their palliative care team, they are NOT for end of life care only, they work in the community, they support all the family, and will notice and manage any changes to grandads condition very quickly, also ask your GP for a referral to the district nurses, these are your contact for any specialist nurses, equipment, and products that may be needed, I've had them both for nearly 2 years, and they've been wonderful. Doing a DNR is a personal choice, I have one along with a ReSPECT form, for peace of mind, should I not be mentally capable of making my own decisions. As your the only carer, with little if any help from your family, I would tell them, if your grandparents are ok with it, you'd appreciate their help/support if their not going to be a problem. As to your last question, it's so important you look after yourself as well, an hour or two every day if possible, to switch off and recharge, not only is it good for you, it will help you be a better carer. It's a difficult calling caring for a loved one with a non curable illness, doing it alone makes it more so. Hugs and love to you all.

Eddie xx