Guilt and Responsibility

[Vikki3]

These are two overwhelming emotions I feel most often at the moment. I feel like everyone expects me to feel sad or scared and of course those are present, but the weight of responsibility is huge.

My mum has just entered a nursing home placement for end of life care due to kidney and heart failure. 3 weeks ago today doctors on hospital gave her 2 weeks due to such low kidney function. I battled to get her moved to a nursing home ASAP so she wouldn’t die in hospital. Now she’s been in the home a week and has plateaued so not the rapid deterioration they expected. I feel guilty for not caring for her at home and although the home are great I never feel its enough. I feel responsible as I chose the home, what if they don’t look after her properly? It will be my fault. I visit everyday but never feel I’m doing enough. Its just her and me, we have no other family. I’m really struggling.

[Ally6]

Dear @Vikki3 my heart goes out to you at such a difficult time for you and your Mum Please try not to be too hard on yourself - I think sometimes when our parents are at end of life, that feeling that youre never doing enough is because inside we instinctively want to make them better, our brain doesnt want to accept that we can’t. I had supported Mum for many years and was always able to provide practical help, or lift her spirits. When she rapidly deteriorated and was end of life I became her full time carer at home for 11 months, but as we drew towards the end, I felt like I had lost the ability to make things better. In reality I was still doing many things to support her, but I was powerless to change the path that she was now on, all I could do was try and make it as comfortable as i could

Please give yourself credit for what youve done already - you fought to get her into a nursing home so she wouldnt die in hospital. The fact that she has plateau’d could possibly be testament to that move and the care she’s getting. I was fortunate I had the support of my brother, but caring for someone full time is mentally and physically exhausting, especially if you were doing it alone . There are pros and cons of caring for someone at home vs nursing home which im sure you weighed up when you made that decision. During the 11 months I cared for Mum, I hold much guilt for all the times I was exhausted and impatient, the frustration, not spending enough quality time with her. So I think we can find guilt and feelings of not doing enough in every situation - there is no perfect solution.

Maybe try and think about what you CAN do to support your Mum in this time - making her room as homely as possible? Arranging visits from friends if she feels well enough? Looking through old photos together? Making sure her hair/nails look nice (if she likes that sort of thing). Bringing her favourite food? There are many things that you are uniquely placed to give your Mum because you know her so well, and ultimately the most precious thing you can give her right now is your love

Sending you hugs and strength

[Vikki3]

Thank you @Ally6 for your kind words. I think you’re right that the feelings of guilt and not doing enough stem from the helplessness of not being able to change the path they are on.

You are incredibly strong to have cared for your mum yourself for so long. I can’t imagine the toll it must have taken on you. I totally understand the moments of frustration and impatience you describe, I’ve experienced these previously before mum went to hospital, it’s impossible to just be their daughter when you’re also their carer. I am fortunate that I can go back to being her daughter for the time she has left, I just have to remember how to do that!

Thank you again for your response.

Love and hugs,

Vikki

[Ally6]

You’re absolutely right - one advantage of a nursing home is you get to keep that role of daughter, which is so hard if you are also their carer. I’ll be thinking of you and your Mum

[Plutorising]

If she is plateaued, then take that as a good sign that the nursing home staff are caring for her properly.

The same thing happened to both my Mum and Dad, they got terminally sick at the same time but my Mum got admitted to the hospice first. She was given a week but she rebounded and passed 3 months later. Same with my Dad, he got admitted to the care centre, was given 3 weeks, but also rebounded and passed 4 months later.

Incidentally, my Dad moved into the care centre the same day as my Mum’s funeral.

I will forever be grateful to the hospice and care centre staff. Like you, I’ve heard horror stories, was deeply apprehensive and watched them like a hawk at first, but they have been nothing but angels. They became attached to both parents and became emotional themselves when they passed one nurse came in on her day off when she was told my Dad had passed!

My partner passed two weeks ago, his story was entirely different. He chose to die at home, and that was harrowing. We didn’t live together (2 year relationship so we didn’t get to that stage), he lived alone but couldn’t get the 24 hour care, only 4 carer visits a day, and towards the last 3 weeks, overnight sitters from the local hospice - but they ended up cancelling often (short staffed), so me and one of his sons took turns to do “night shifts” to watch him, until the day carers intervened and decided to take over the nights.

He couldn’t be left alone for even 10 minutes. The pain he was in was absolutely horrendous. Any time a palliative nurse was called, we would have to wait 1-2 hours for them to arrive.

I think if my partner was at hospice, it might have bought more time, his quality of life would have been at least more comfortable, and he may have still been here, but he was adamant he was to be at home when he passed.

You made the right choice to refer your Mum to a nursing home, she will have the comfort, dignity, and 24 hour care she needs.

[Clomoss]

Vikki, you poor thing I’m so sorry you’re going through this. I lost my mum 3 years and I know exactly how horrible guilt is but I just wanted to say this - my mum was in hospital at the end and we managed to get her home but then I STILL had awful guilt that I wasn’t caring for her as well as she was getting cared for in the hospital even though it was exactly what we had wanted. The point being that I have come to realise that guilt is a big part of the grieving process no matter what you do and I’ve found it helpful to realise that it’s inevitable especially when you love someone so much and want to do the best for them. 3 years on I still regularly think “I wish I’d done this or that” but I am getting better at hearing my lovely mum telling me not to be daft. I’m sure your mum would do the same. You are doing your very best in very difficult circumstances and I’m sending you a big hug xxx

[Vikki3]

I’m so sorry for all the loss you have experienced, I can’t imagine how painful that must have been. To honour your partners wishes up to the end is something to be proud of, although I can hear how much of a toll it took on you and others. I’m realising through this that we all just do our best with whatever situation is in front of us. We will always question whether we could have done more/better etc. There’s no “right way” to care for someone who is dying, it all feels wrong because the situation is so unbearably painful. I think in a way I’m focusing on guilt to avoid feeling the pain of losing her.

Thank you for your response. Your strength has inspired me x

[Vikki3]

Clomos, thank you for your lovely message. Today has been a tough day and your support and understanding has lifted my spirits.

I’m so sorry to hear about your mum. I really get a sense just from the way you write about her that you had a special bond. You’re right that I’d feel guilty no matter what decision I’d made for mums care. We want the best for those we love.

Thank you again for taking the time to reach out, it meant so much today x

[Clomoss]

Not at all. I hope today is better for you. Look after yourself and know that you’re not alone. Sending hugs xxx