My Son's Grandad has terminal Cancer. Had to make a difficult decision.

[malgrat78]

I have posted various times on Mumsnet with regards to my 13 year old Son & the ongoing issue with his Mother. My Son originally lived with his Mum & stayed with me a couple of nights per week. Unfortunately, things took a turn for the worse & his Mum got involved with a Heroin addict & then she developed drug issues. I had to take the decision just over a year ago to have my Son stay full time with me. This is what he wanted & what I believed was in his best interests. It’s been an extremely difficult time for us all with a lot of ups & down, but we have managed to tackle things together.

At the beginning of all this my Dad who is now 63 moved back from Italy where he was living & moved in with me for 6 months until he found somewhere. He found a sheltered accommodation & moved into there just before my Son came to live with me full time. At the end of November my Dad was diagnosed with terminal lung cancer which had spread to his brain & was given months to live. He was in Hospital for 3 weeks & we could not visit him due to Covid. Due to the brain cancer, he had suffered some facial drooping & wasn’t able to eat or drink normally, so he had a NJ tube fitted. The NHS did a continuing healthcare fast-track discharge at the end of December. It was an extremely stressful time for everyone trying to organise different organizations to get him home. I had considered taking my Dad into my home, but I was extremely concerned for the impact it could have on my Son. I had to consider things such as the times my son maybe alone for a while with his Grandad who was nearing the end of life & how this could frighten him. I was told that my Dad could suffer seizures & fits which I believe would have impacted my Son. I spoke to my Son about his Grandad & asked him how he felt & how would he feel seeing Grandad poorly. He said he would prefer not to see him & would prefer to remember him how he was & not like he is now unable to walk & with tubes feeding him. I also had to take into consideration the difficult time my Son already had suffered with his Mum & how he was still coming to terms with that. I just could not bring myself to not listening to my Sons concerns & feelings.

My Dad is now at his home & he has careers going in 4 times a day. His Sister stays 2 to 3 days & I stay once a week when I can but visit him every evening for a few hours to help him & spend some quality time together. He is slowly deteriorating & can no longer make it to the bathroom & his pain is increasing every day, so his Morphine has been going up weekly. He is becoming short tempered & losing his memory. His speech is becoming unrecognizable & I find it difficult to understand him. I can no longer remember what my Dad used to look like & when I close my eyes, I just see this poorly man who I barely recognize. My Son speaks to him occasionally on the phone but is quite adamant that he would rather not see him & my Dad does understand this & did say he knows his grandson is very sensitive. I am now finding things very difficult keeping it all together mentally & emotionally & now I find guilt creeping in. I keep feeling like I am not doing enough & I keep thinking that I am a bad person for not having my Dad stay here while he is dying but I couldn’t bring myself to having him here & it effecting my Son. I just think it would have been too much for my Son to handle mentally & emotionally especially as the end nears & things can get quite upsetting.

Has anyone been through something similar?

Malgrat78, do you have anyone in real life to talk to? A friend? A counsellor?

You have a lot on your plate and need a safe place to offload.

Any decisions involving the ongoing care of our children and parents are always fraught with guilt, uncertainty and sometimes tinged with sadness.

I am a nurse and I firmly believe that you have made all the right choices with regards to both your son and your father.

Be kind to yourself!

I think as much as you very obviously love and care for your dad, that putting your son (who by the sounds of it has suffered quite enough trauma as it is) first has to be your priority, so you are doing the right thing and as difficult as that is, that is to be commended.

Your dad is being looked after and visited by his children and you sound like you are doing a great job a juggling a very tricky situation and have nothing to be feeling guilty over at all.

Keep your chin up and I hope someone else comes along with some more constructive advice than I have.

Malgrat78 are you in the UK? If so have you accessed the help that you can from Macmillan Nurses or Marie Curoe. There is also the Brain Injury Trust.

Marie Curie!!

I remember your other threads OP, I really feel for you. You have had to make a very difficult decision, but like you said having your dad at home with you would have been traumatic for your son. I think you’re doing the best you can in awful circumstances, and your dad understands, and knows you love him.

Both of my grandads died when I was 13, one of lung cancer. I didn’t know that at the time, nobody sat me down and told me he was going to die and I wished they had. At least you have prepared your son and given him the choice of how he wants to remember his grandad. I hope when the end comes it is peaceful and painless for him.

I'm sure you've made the right choice. My dad had lung cancer and his death was horrific. There's no way you could expose your ds to that. You have a huge amount on your plate and you sound very tuned in to the needs of your son and father. Be kind to yourself.

@redastra

Malgrat78 are you in the UK? If so have you accessed the help that you can from Macmillan Nurses or Marie Curoe. There is also the Brain Injury Trust.

Yeah I'm in the UK. We are being visited by a palliative care nurse on Tuesday. However, I had to ask for this and it took some time. I think the palliative care nurses are Macmillan?

@redastra

Malgrat78, do you have anyone in real life to talk to? A friend? A counsellor?

You have a lot on your plate and need a safe place to offload.

Any decisions involving the ongoing care of our children and parents are always fraught with guilt, uncertainty and sometimes tinged with sadness.

I am a nurse and I firmly believe that you have made all the right choices with regards to both your son and your father.

Be kind to yourself!

i did have a lot of support at work but I've been working from home for months now. However, I'm still in contact with a few colleagues and my Auntie has been great.

I do think I have made the right choice as I've put my son's feelings first and he needs that especially due to the other things he's been through but then the guilt creeps in and the what if's.

Malgrat78 where in the UK are you?

When I was a similar age to your son, my Mum forced me to spend time with a dying relative - my aunt was unconscious but was having muscle spasms and other symptoms. I was made to sit and watch while she died as my Mum believed that it would make me a better person. I didn't have a say in it, and to this day there are certain sounds/smells that bring me right back to the situation.

The fact that you gave your son a choice shows how thoughtful and caring you are. And the fact that your father is happy with it is also testament to how well you all communicate.

There is no rules as to how to deal with this, we just have to do the best we can. If you ever want a chat pm me

@redastra

Malgrat78 where in the UK are you?

When I was a similar age to your son, my Mum forced me to spend time with a dying relative - my aunt was unconscious but was having muscle spasms and other symptoms. I was made to sit and watch while she died as my Mum believed that it would make me a better person. I didn't have a say in it, and to this day there are certain sounds/smells that bring me right back to the situation.

The fact that you gave your son a choice shows how thoughtful and caring you are. And the fact that your father is happy with it is also testament to how well you all communicate.

There is no rules as to how to deal with this, we just have to do the best we can. If you ever want a chat pm me

I'm in Yorkshire @redastra

When I was around 10 maybe younger I had to regularly visit my dying great grandad who had his leg amputated due to gangrene & was on a lot of morphine. To this day that is the only image I can remember & as I see my Dad becoming more poorly & him having more morphine all these images are coming flooding back of my great grandad.

I think this is one reason I am not forcing my Son to see his grandad. In everything I do with my Son I like to get his thoughts & feelings & validate them. If he says he feels a certain way then I try to support him. However, in this situations I'm finding it all difficult.

My husband has just died from lung cancer with bra8n mets, we brought him home fir the last two days when he was peaceful and non responsive- there is no way in hell I would have submitted my DS (18) with ASD to the days before whilst he was in hospital. I was allowed in with him as end of life and it was horrible for everyone. They fast tracked him home with carers x 4 a day and requested Marie Curie support but (I'm in West Yorkshire) they only offer 3 days - he passed at home before they even got in touch.

@notapizzaeater

My husband has just died from lung cancer with bra8n mets, we brought him home fir the last two days when he was peaceful and non responsive- there is no way in hell I would have submitted my DS (18) with ASD to the days before whilst he was in hospital. I was allowed in with him as end of life and it was horrible for everyone. They fast tracked him home with carers x 4 a day and requested Marie Curie support but (I'm in West Yorkshire) they only offer 3 days - he passed at home before they even got in touch.

I'm so so sorry for your loss. Big hugs

Not answering your question directly, but if you’re worried about the impact on your son, Winston’s Wish is a childhood bereavement charity that is well respected...might be worth looking at. The pall care team may also be able to access support for you and your son. Sounds like you’re doing an amazing job in horrible circumstances.

Stte.

It's a different choice to the one I would have made, but I am very close to my parents and have always been the sole parent caring for my child, so though I know it would have impacted, for me I'd have done everything I could to reduce this impact.

However, even though it would be a different choice, I do think that as a lone parent, where we have to make all of the decisions alone and the buck stops with us, that it's important to live by the code of, once the decision is made, to be able to say I made the right decision for us at that time. And not beating ourselves up further down the line. Great if lessons can be learned and changes made, but many decisions can't.

Making sure that there's enough support in place is key to managing, as is forward planning. Having those hard conversations with your dad now, if you haven't about his wishes. Planning for how he'd like his end of life to go, funeral etc.

Probably, getting greater support so that you can be as present as possible now, so that you don't find yourself racked with guilt after. But also planning, for the time you have with your son being as positive and upbeat as possible and yet allowing him to have closure on what will be a huge loss for both of you.

I assume that given the discharge etc, that you have been contacted by all of the appropriate agencies for your dad and you?

@MotherExtraordinaire

Stte.

It's a different choice to the one I would have made, but I am very close to my parents and have always been the sole parent caring for my child, so though I know it would have impacted, for me I'd have done everything I could to reduce this impact.

However, even though it would be a different choice, I do think that as a lone parent, where we have to make all of the decisions alone and the buck stops with us, that it's important to live by the code of, once the decision is made, to be able to say I made the right decision for us at that time. And not beating ourselves up further down the line. Great if lessons can be learned and changes made, but many decisions can't.

Making sure that there's enough support in place is key to managing, as is forward planning. Having those hard conversations with your dad now, if you haven't about his wishes. Planning for how he'd like his end of life to go, funeral etc.

Probably, getting greater support so that you can be as present as possible now, so that you don't find yourself racked with guilt after. But also planning, for the time you have with your son being as positive and upbeat as possible and yet allowing him to have closure on what will be a huge loss for both of you.

I assume that given the discharge etc, that you have been contacted by all of the appropriate agencies for your dad and you?

If my Son had not been through the difficult time with his mother I may have made a different decision. My Son is still trying to trust people & I have had to make a lot of difficult decisions over the last Year or so but my Son has always had to come first & I have had to try & build up his trust again by listening to him & validating his feelings. My Son needs to feel listened to & safe in his new home. He was clear that seeing his Grandad pass away in our home would upset him & there would be very little way I could lessen that impact. I had to go to my Dads last night to change his bedding & my Son came along. My Dad was admitted to hospital again Yesterday as his NJ tube became block so he wasn't there at the time. My Son could only spend a few minutes in my Dads home before he became overwhelmed & upset after seeing all the hospital equipment, feed pump, syringes, bed pans, boxes of medication, hospital bed etc etc. This was enough to hit home how much it would have impacted him if he was to see this in our home along with his Grandad who looks very different to what he remembers.

I have tried to have discussions with my Dad about his wishes but he shuts down. However, I plan on trying again when he comes home & it maybe a better time when the palliative care nurse comes to see us which was supposed to be tomorrow afternoon.

I have very little support & not many people to look after my Son given the situation with his Mum. I have his older Sister to help occasionally however she did move my Son's mum in for a while a few weeks back until she found that her Mum was back with the Heroin addict boyfriend & kicked her out. It is all very difficult at the moment & my Son is my main priority as not putting him first now could have serious consequences as he gets older.

@BillywigSting

I think as much as you very obviously love and care for your dad, that putting your son (who by the sounds of it has suffered quite enough trauma as it is) first has to be your priority, so you are doing the right thing and as difficult as that is, that is to be commended.

Your dad is being looked after and visited by his children and you sound like you are doing a great job a juggling a very tricky situation and have nothing to be feeling guilty over at all.

Keep your chin up and I hope someone else comes along with some more constructive advice than I have.

Thank you. I spoke to a Macmillan nurse earlier on the phone which helped me process things in my mind a little better.

@malgrat78

I'm a single parent of a teen currently caring for my dad on end of life care, and my mum who is struggling to cope and showing signs of mild cognitive impairment. I have had to take an unpaid career break to do so and right now I'm not sure ill be able to go back to work as planned.

You have absolutely made the right choice for your son, who has been through so much already. He is really lucky to have you and that you have put sensible boundaries in place.

My DD is 16 and has seen and heard all sorts over the last year. She's a resilient kid and we still make time for each other at home (my parents live around the corner so I'm just there most days and one overnight a week), but I think for her seeing the impact caring has had on my mental health has been the worst thing.

Has a referral for hospice care been made for your dad, either at home, or as an in patient? If not do ask your GP as this could be really beneficial and will offer you some peace if mind going forward.

Be kind to yourself...your son and your dad are both very lucky to have you.

[quote MintyCedric]@malgrat78

I'm a single parent of a teen currently caring for my dad on end of life care, and my mum who is struggling to cope and showing signs of mild cognitive impairment. I have had to take an unpaid career break to do so and right now I'm not sure ill be able to go back to work as planned.

You have absolutely made the right choice for your son, who has been through so much already. He is really lucky to have you and that you have put sensible boundaries in place.

My DD is 16 and has seen and heard all sorts over the last year. She's a resilient kid and we still make time for each other at home (my parents live around the corner so I'm just there most days and one overnight a week), but I think for her seeing the impact caring has had on my mental health has been the worst thing.

Has a referral for hospice care been made for your dad, either at home, or as an in patient? If not do ask your GP as this could be really beneficial and will offer you some peace if mind going forward.

Be kind to yourself...your son and your dad are both very lucky to have you.[/quote]
Thank you & so sorry for you're situation. Yeah the impact on emotional & mental health is concerning as for the last couple of months my attention & thinking has been constantly been on my Dad. I'm trying to be present for my Son but it is difficult juggling everything & trying not to let it effect my Son too much who has been through so much already.

There was no arrangement for hospice care or any other support until I contacted the hospital a few weeks back & they suggested it may help. We were supposed to see a nurse from St Gemma's hospice today but unfortunately my Dad is back in hospital so I have rearranged it for this Thursday & it does sound like it will be of great help.

@malgrat78 I really hope you have a successful meeting with the hospice.

Carers UK is a great resource and the Elderly Parents thread on here (under Other stuff iirc) is full of supportive people dealing with elderly and/or unwell parents and has been a massive lifeline for me over the last couple of years.

[quote MintyCedric]@malgrat78 I really hope you have a successful meeting with the hospice.

Carers UK is a great resource and the Elderly Parents thread on here (under Other stuff iirc) is full of supportive people dealing with elderly and/or unwell parents and has been a massive lifeline for me over the last couple of years.[/quote]
Thank you I shall take a look & the lady I spoke to at the hospice sounded lovely so fingers crossed.

Malgrat78, I am sorry I havent been on for a while, I have been working nights. How are your son? And your Dad? How are you doing?

I have no advice but it sounds like you thought it though properly and have made right decisions so far for everyone concerned.
It’s an extremely difficult situation but you will get through this. Get the right help that’s out there and take care of yourself amongst this stormy sea.