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.
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.
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.
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.
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.
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.
I hope you are able to find some help within the resources Brigette has provided you with there.
I am pleased to read you are getting some help from the Marie Curie nurses, they really are incredible and can give you a well deserved break.
Thank you for your kind words about my Dad, it is very difficult coming to terms with him passing away and I am still learning how to deal with it. Talking to people who have been through similar really does help.
I remember the delirious stage very well, my Dad seemed to be talking (I say talking, we couldn’t really understand what he was saying most of the time) but talking to no-one or people who weren’t actually present. One thing he kept saying was “no, not yet” which will stay with me forever as he still held on for a week after that so he knew he wasn’t ready to go just yet.
It may seem strange to other people but you might find yourself finding comfort in little things like that.
Last Tuesday night Dad passed away. It was a horrific day. They had put him on the driver the night before and he wasn’t really with it, but fighted all day. He was erratic and the nurses and GP (finally) came out to see him. GP reckoned he had a chest infection, which I wish she had found sooner and they gave him extra pain and muscle relaxant twice I think. He was so unsettled all day I was a mess. He didn’t pass until the evening when we called a paramedic. My husband stayed by his bedside with him until the end.
Now i’m in the process of running around again, totally consumed by all things Dad. All his belongings and his van he lived in. My husband cleared it out a few days ago and that lifted me as it had been a huge element of stress, visiting the van when he was still there was always hard.
He has left me a Winnebago along with everything else so we have a future project. But right now I am organising his Natural Burial, Wake for 1,000 people it seems and all his business stuff.
I have been going through his emails this morning and found PDFs of his initial brain scans. The tumours looked huge then. He always made out he didn’t know. Now I know how much he was trying to protect me. But I need to get to the bottom of why it happened. They don’t usually start in the brain. I found a message from him to the hospital where he said he had wobbly legs for years when he felt stress… i need to get to the bottom of this.
I am sorry to read about your dads death.It is heartwarming to read that your husband was with him.
Many people tell us that the first few weeks and days after a death can be all consuming whilst you sort through paperwork and make arrangements. It sounds like you have a lot of things to sort through and arrange.
Please keep using this space to chat and share your thoughts and feelings if it helps and importantly remember to be kind to yourself.
Funeral arrangements are nearly done. every evening about 4:30pm I get such a heavy pain at the top of my back/neck. It’s from carrying everything. I am waiting for a call from the celebrant, who turns out to be an old friend of my dads family so that’s really reassuring. I had to answer a load of questions via email earlier to make a start. And I went from thinking I knew nothing to writing loads whilst sobbing. I chose the music with some help and have chosen a farewell poem for his graveside. i read 38 pages of them to find one suitable.
I think once this chat is over I can relax. I do lots of other stuff to do, finances etc but I think this might be the worst bit. I have this week and next of with his funeral being next monday so hopefully I’ll have some time to be me. I wish I could go away but something is holding me back from doing so.
Thank for keeping in touch with me so far, it really helps have someone I can tell everything to.
I hope you are feeling like some weight has been lifted after your chat with the celebrant. Preparing for the service can be a roller-coaster of emotions as we thing about the past and remember shared moments and history with person we loved, but hopefully your chat yesterday has lifted some of that weight you are feeling .
It is important to be kind to yourself and if you need to take a break and are able to do so that is fine. There are no right or wrong ways to manage your emotions and grief. Please keep chatting if it is proving helpful, we are all here to listen.
I would like to say how sorry I am to read that your Dad has passed away. These next few weeks with be very consuming and you will find yourself running on adrenaline. Please remember to take some time for yourself and lean on those closest to you if you need to.
I do hope you are able to have the funeral your family wish for especially during these uncertain times.
Thank you everyone for your support so far. Today is my first day back to work (I work from home). I have four weeks off for compassionate leave in the end. A bit part of me is not looking forward to normal life again. Especially with another dreaded lock down possibility. I don’t really know how I feel.
The funeral went very well and we were able to have a wake which was very nice. But now I feel a bag of mixed emotions, finding out new things about Dad that I wasn’t happy with so it’s a mixed bag right now.I have another Force chat tomorrow with a counsellor which i find are helping, just a long time apart. So will see if it lifts everything a bit.
I think my main struggle going forward will be dealing with how ill he was. I’m worried about having some form of PTSD from it. So I need to focus on resolving the issue before it gets too bad.
Hi Gina, I am sorry to hear about the loss of your dad. I think the kinds of concerns and worries you have expressed are natural, given everything that has happened. Certainly, feeling apprehensive about the future or even not knowing what you feel, is a normal part of the experience of grief. How have things been for you today back in work?
It sounds like seeing your dad so unwell was understandably hard and has brought up some difficult emotions. If you have a good relationship with your counsellor and feel comfortable sharing with them, hopefully talking things through might be helpful. Losing a parent is such a difficult experience and while it is good that the funeral went well, it is important to make sure you are taking good care of yourself now. If you find these thoughts or memories are causing distress and you are not able to manage, it is also fine to speak with your GP as well.
While we are not counsellors, the Marie Curie community is certainly a safe space to share whatever you are going through – you are welcome to share as much or as little as you need.
