My 55 dad has severe brain tumours. Fading away in front of me.

ginasaro 4 years ago

13 replies

Hi all

I am Gina, 33 years old and live in Mid Devon with my husband in an old bakery. In June my life was turned upside down as my dad went to hospital thinking he may have had a stroke, but they discovered 5 brain tumours. Roll on to now and he is now slowly fading away in my living room. 

I decided to bring him in with us a week ago, knowing his mobility was quickly declining. Since he moved in, his first two days he must have been full of adrenaline as he was quite good. Then Friday came and he just plummeted. He is sleeping a lot now. Lack of appetite is rearing its head as portion sizes are decreasing. He admitted to me yesterday he has been having headaches for weeks. Which I wish I had known so much sooner. 

Before he moved in, he was living in his transit campervan. It was getting so difficult to help him, along with twice day care. And multiple visitors a day. I don't know how he kept it together. His mobility was so bad even then, he could hardly move around the van. Being a steel fabricator, luckily his van had many bars that were previously for hanging things, but aided his walking for a while. Every day we visited (my husband is a civil engineer) we would be tasked to make something new to help him. 

Now he is here, in some ways it is easier, but lack of sleep by day five meant we have had some night sits. He is constantly agitated. To hot, or cold. Sore back from laying. He lost the ability to use cutlery a few days ago and often doesn't know where his hands are. It's suck a head f**k. So hard to watch. He hasn't been able to leave the bed since saturday. Today they are installing a hoist, but I just wonder if it is too late. He is so weak. A hospicare nurse is visiting us later and I think they will increase his pain meds now he has admitted the headaches. I feel now he has said out loud he has them, they will get worse. 

Dad was fit and healthy up until June. We weren't very close as I didn't approve of how he was living. Mainly because I worried about something happening to him, and look what happened. But we have put everything to rest and I am so pleased I can offer him his last time with me. It is so hard though. I cry every day. I'm like a small child backed into a corner who doesn't know what to do. My mum is 20 years older as she had me late in life, never did I dream I would lose Dad first. They were together nearly 30 years, but still close. yesterday he upset her. So now I'm worried she's gone home and won't want to see him again. 

HannahJG 4 years ago

Hello Gina,

Thank you for being able to share your story. It is very brave of you. 

I am so sorry to hear that you are going through a tough time, accepting this is your reality can be a very hard pill to swallow. Despite your past differences, it sounds like you have some fond memories of your Dad - keep hold of those. Try not to allow negative thoughts take over. 

It is so difficult to see someone you love deteriorating in front of your eyes, most of the time you will feel helpless. But know, that just you being with your Dad will be helping him. As impossible as it may seem, I hope one day you are able to look back and be glad you could spend his last days with him. 

I cared for my Dad in his last days. He died just 6 months ago from a very short battle with cancer. So from personal experience, I am grateful I was with him in his final days and as he passed. 

I send you nothing but well wishes, please take care of yourself.

Hannah - Community Super User

ginasaro 4 years ago

Hello Hannah

thank you for your reply. And it really reassuring to hear from someone else how it can be afterwards. This is what I am hoping. I feel full of happiness to have him here. Even though it is hard. My husband is struggling as we had his mum's funeral also last week, and the house is feeling less like our home. He developed shingles, so we have been a bit separate. Usually we are very close. 

yesterday Dad took a sleepy turn and is now only waking if he has a dry mouth or hot, so I have a bit more time throughout the day. So I'm making a vested effort to care for my husband some too. We really have been through alot together. 

I do have so many good memories with Dad and I will hold on to these. I try to not think about anything negative as I know it'll do no good. I don't think he is up for visitors any more now. Apart from hopefully his little dog Ted this weekend, a 3 year old Schnoodle. :-) 

I hope you have been able to come to terms with your loss of your Dad, I know they say it is a part of life, but all the same it is very sad. I think it'll make us stronger having had them here in our homes. 

Gina 

admin 4 years ago

Hi Ginasaro,

I was wondering how Dad is today. We have some information on our website which may help you to prepare for Dad's final days and our Support Line is here until 5 today, with one of palliative care nurses working with us if you have any questions you think they can help with.

The information I was talking about is here  and if you want to talk the Support Line is on Freephone 0800 090 32309.

Take care 

Brigette- Support Line officer 

ginasaro 4 years ago

Hello Brigette, Dad's been really unsettled. So I was advised to up his steroid again and also increase the oramorph and lorazepam. So he's now quite delirious. More calm but talking constantly. Know's who I am and he's in my house but it's crazy what he's talking about. I tried getting him to drink with a straw earlier, which he has been doing for a good few days and he couldn't recognise the straw in his mouth. can still drink from a sports bottle if I give him it. I wish someone could be here to see how he is as I am unable to gauge if it's bad or not... we do have a night sit again tonight though from marie Curie as they have put him/us as a priority. Only got to sleep at 2am and my husband was up with him at 6:30am, we're shattered. 

He also has thrush in his mouth now so had to get some liquid meds for that. it's getting all the stuff in him when we have the short periods of him being awake that are becoming hard. 

Brigette 4 years ago

Hi Ginasaro,

I am pleased to read that you are getting some support from our nurses, and I hope you were able to get a good nights sleep.

If ever you need to speak to a nurse we generally have one with us on the Support Line between the hours of 10:00 am to 16:00 pm, whilst they cant give advice they can offer information, signposting and a listening ear if that would ever help at all.

If anybody reading this has any experience they can share then please do.  

Wishing you all the best,

Brigette- Support Line Officer.