My father has Acute myeloid leukaemia (AML) - LC going through intensive treatment. He has been in the hospital now for over 80 days. my sister, his girlfriend and I have spent the night every night he has slept there.
I love my father more than anything in the world, but this reality and hospital life is so hard, today I wonder if everyone stays with their lovedones every night at the hospital? I just can’t sleep for one hour and it has turned my life upside down, work, I recently got married too, so it’s been a mess, as I don’t sleep I can’t work, when I’m home with my husband I’m sleeping. I feel guilty for asking this but I would like to know how other people deal with this. I absolutely adore my father would do ANYTHING him. But spending the night at the hospital is starting to become a source of awful anxiety for me, I even had a panic attack one night at the hospital, I would love to propose my father to stay until midnight and then sleep at home. But I feel so guilty and selfish even asking this, does anyone feel the same way?
Oh @Valentina123 I have just replied to your other post, but reading this post I really feel I know the real you.
Have you spoken to your sister and your fathers girlfriend and your father about how you are feeling?
I think feeling guilty, selfish, anxious and torn in all directions is so, so natural.
It is so obvious that you adore your father more than anything in the world, but as you say you just cannot carry on as you are are making yourself anxious and perhaps may I say completely exhausted.
This is really obviously taking a toll on your relationship with your new husband and your job.
Your father is being cared for in the best place for him at the moment.
I just do not know how you have kept going this long.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps all talk to each other and get some balance back into your lives and as I said in your other post look after yourselves as well as you are all looking after your father.
Please do keep posting
Didn’t want to read and run. My heart goes out to you. I nursed my dad earlier this year until his death (not from blood cancer) in May and i know the extreme toll it took on me so i can only comment from that perspective. We wouldn’t have been permitted to stay in the hospital with him, it was absolutely not an option. It wasn’t an option either when my husband was critically ill with a blood cancer. I dont think i could have committed to that for my own health and wellbeing. He was in the (relative) right place with the right care and needed to rest at night. He needed that more than he needed an audience all day and night. But like i said, we would not have been permitted to stay in the first place. When my dad was dying at home, i stayed with him round the clock and that was the privilege of my life. But it came at a significant cost to my health and the lack of sleep and food took a while to recover from. I hope you feel you can talk soon to your dad, sister and dad’s girlfriend about this - maybe to discuss a plan where you take turns and, crucially, have nights off. Its the only way to keep going in my opinion. I love how you adore your dad and, without knowing him, im sure he’d want you fit and well while supporting him. Every good wish to you all
I am sorry to hear all that you are going through at this time.
In April this year my 20 year old daughter was diagnosed with Acute myeloid leukaemia (AML). Her ward team were amazing around having loved ones stay. I stayed with her but came to the realisation that I couldn’t stay every night and I do not operate well with lack of sleep. So we talked about what she would find comfortable. We got into a routine where I would stay 3-4 nights a week. I would time these to coincide with morning consultant ward rounds. This meant I was there to ask the consultant questions and remember things for my daughter.
I also purchased a camp bed and was allowed to bring that into her room. I got myself some ear plugs and gradually got more used to camping out in her room. As we relaxed into our routine it also ensured I got a better level/quality of sleep.
It has not been easy and I think it is important to remember (as others have said) your father is in the best place. It is also important to look after yourself in all of this. Your father (or any loved one) would not want you to become unwell. I would always change my routine if my daughter needed me to but it meant that I could go home and sleep in my bed. I would then get up, do some jobs at home which meant I then felt ‘ready’ to go back into the hospital and be with my gorgeous girl
I hope everyone’s responses help. Please keep posting as this forum is such a supportive place.
Take care for now
My husband has Acute myeloid leukaemia (AML) - we’re a month into treatment. I haven’t stayed overnight at all but that’s partially because we have two children and we need to keep life moving consistently for them however it’s partly my own preference that I need to function and sleep in a proper bed and also keep some ‘normality’ for me personally too.
You should not feel guilty at all with whatever approach you do. I find a long day in the hospital visiting, even when he’s having a good day, incredibly exhausting and draining so I mix it up each week and tend to visit 4 days on average.
Whatever you do, you’re doing an amazing job x
Like you my father also has Acute myeloid leukaemia (AML). He’s 82 and when he was first diagnosed he was in hospital for 5 weeks, so not as long as yours. He’s been back in for a couple of weeks on and off since too.
Neither myself or my mother stayed overnight at all. It wasn’t given as an option, but also we knew that we needed to be top of our game while all of this is going on. Mum went and sat with him every day for a few hours and I went three times a week. But leaving him at night also allowed him to get rest too.
So please don’t feel guilty if you feel you can’t stay all the time.
My husband has had a relapse and got Graft-versus-host-disease so got admitted to hospital over a month ago. I have been staying the night at the hospital for over 40 days so far.
You are very lucky that the hospital is letting you take turns with family members to stay at the hospital. The hospital that my husband is staying at were being extremely unfair by saying that only I am allowed to stay the night (no swapping) and have to stay for 24 hours with no going home for 7 consecutive days. I had to convince them that this is unfair as I have 3 children under 16 at home and also need breaks for my mental well-being. We came to an agreement that I could go home for a few hours during the day and a visitor could come to see him during those hours.
I understand that they are trying to reduce the risk of infection but this is extremely unfair on carers.
Your family will understand why you are at the hospital and I’m sure you father appreciates every minute you are spending with him.
Keep strong x
Hi @Jas83 Welcome to our forum and I am so glad that you have posted, you sound so caring
Personally I have no idea how you have kept going for over 40 days, especially with all you must have going on at home.
You yourself say that you need breaks for your own mental well being.
I am a bit confused is the hospital saying that your husband needs visitors 24/7 or are they worried that you might get germs etc. by going back home.
When my husband was in hospital for a prolonged time he said he was pleased when I went home as he had never spent so much time with me, we quickly ran out of conversation and he was pleased to just just have some time on his own. He also realised that I needed a good nights sleep and time to sort things out at home.
These are just my thoughts.
Perhaps as a carer you might need to take as good care of yourself as you do your husband.
Thank you for your kind words Erica.
Yes the hospital seem to think that I will put him at risk of bringing in germs if I go home but he’s allowed different visitors during the day, just does not make any sense to me. They clearly are not thinking about my well-being or the needs of my family.
My husband was diagnosed over a year ago and has been having treatment since. He has Graft-versus-host-disease really badly and it’s affected him physically and mentally.
I hope things get easier soon because I don’t know how much longer I can stay at the hospital like this.