Mum is dying

End of life
341

Hi Caroline

Thanks for your lovely words, they mean so much to me.

I live in a ground floor flat in lovely communal gardens and I have a private grassed lawn and tree in front of mine so the bench is under the tree by my front door. It is an area dad, me and Sammy used to sit in the summer spending hours just chatting and I would make us lunch so it’s our perfect place.

I know dad will be with me tomorrow because on his birthday’s it was always just us 2. My mum never bothered with his birthday and my brother rarely visited.

I have spent 2 days in tears since the letter as horrible timing with dad’s birthday but that was obviously how it was intended to impact me. It hurts me so much that they could do this to dad knowing it would devastate him. Dad disliked my mum immensely over the last 15 years but he wouldn’t expect my brother to be like this. Never mind I will get over it, just takes time on top of my grief for dad.

I have wrote him a lovely letter so will read it to him tomorrow

Hope you have a nice evening\weeked.

Fingers crossed it stays dry tomorrow

xxx

342

Hi Lyn,

Perfect location for your dad’s bench and you and Sammy can share your thoughts out there. I have my fingers crossed for some sunshine but whatever the weather just do it your way.

Try to put aside the horrible things your family are doing - hard I guess but don’t let them drag you down. Maybe your brother will become more approachable when more time passes but if not you don’t need him. You are your own person and your dad loved you just the way you are.

I love the fact you write to your dad; I wrote to Mum a few days before she died but have not since.

Take care,

Caroline xxx

343

Hi Ann

I hope with spring and warmer weather round the corner will give us all a lift in our spirits that we all deserve.

I think your dilemma about your mum dying at home or hospice is a personal choice around what you can all cope with as a family. Do some research and phone a hospice and find out all the info before you make any final decisions. Are you able to ask your mum what she wants? Can you cope with caring for her at home especially as or when she may deteriorate? It’s a challenging choice either way but you must do what you and your mum feel is best

xxx

344

Hi Ann,

Thank you for your reply. Houses are odd really as they hold so many memories don’t they? I just want to stop having to think about the sale of the house - if I lived more locally I would possibly have wanted to keep the house but I live at a distance so it is not practical.

The dying at home versus a hospice is a difficult one. My mum had always wanted to stay at home but after a kidney crisis in March 2016 she was discharged into a nursing home. At the time we imagined that she would transition back home but that did not happen.

We discussed the hospice versus nursing home option which is rather different to your situation. However, I will comment on my experience, if I may, as it may be relevant

When Mum entered the nursing home we discussed her end of life options and had am agreed/recorded plan drawn up. Do you have an end of life plan for your Mum? I suppose the main driver is what your mum would want but you do have to balance that with what is practical and where she can receive the best care.

Have you considered a respite period in a hospice to give yourself a break? This could also help you evaluate this as an option.

We discussed moving Mum to the hospice when the time came but the nursing home staff advised us to keep her with them as she would know them. Your situation is different as you are having to cope with all the caring - how many care/nursing visits does your Mum get each day? Mum’s doctor told us we could request a place in a nursing home for respite too - could you look into that?

From what I have heard and seen the worse option is passing away in a hospital bed.

Caring for a dying person at home is incredibly tough and you have your family too look after too. It is a personal choice - can you Mum communicate her wishes now? At the end of the day you have to make an informed decision - ask your GP to help you with the choice of options and ask for some respite care.

Whatever you decide please don’t fret about getting it right. This is difficult territory and very emotional. My decision to keep Mum in the nursing home was a hard one as I know how much she always wanted to go back home but, towards the end, I knew we could not keep her safe and comfortable at home. Your mum is already at home so that makes the decision harder as if you don’t keep her there you may feel you are letting her down but you are not.

Ask the District Nurses, GP and family around you for their views and advice. At the end of the day it is a personal choice. Whatever you choose don’t forget to ask the professionals for more help and support as you are entitled to it. Do you have the Hospice at Home service involved?

Sorry for the long rambling post but maybe it will help.

Look after yourself,

Caroline xxx

345

I forgot to say that the decision to keep Mum in the nursing home proved to be the right one for us and Mum. She had 24 hour professional care and nurses on hand to monitor her condition towards the end.

I did not have to worry about her in the same way I may have done as she been at home - I was scared that I would not be able to keep her comfortable and well cared for/clean etc. I am not a very practical person and having professionals around me made me feel confident that I was doing my best.

I have never been to a hospice but I understand that they are wonderful places in light of what they have to cope with.

C xxx

346

Hi Lyn, Caroline,

Thankyou for the replies. Yes, we have done lots of research and that is half the problem as there are pros and cons for each.

On a practical level and stress level, she should already be in a hospice. The palliative nurse did a referral (by accident!) this week which has brought the issue to a head. My mum wants to stay at home but doesn’t want any pain which is where my dilemma comes in. I have put my entire life on hold for 9 months now as I have been caring for her at home since she fell, 2 days after my dad’s funeral.

It really is putting such a strain on me and my family but at the same time I think we have got so far so just keep going? A district nurse goes in once a day, carers 4 times a day then either a carer or Marie curie stay at night. I live 5 miles away so I am just going backwards and forwards all the time.

My mum would go into a hospice happily, we have discussed it, but she doesn’t seem to feel ready and also wants “authority” to tell her when to go. Unfortunately the nurses, carers, GP and hospice nurse simply say it is up to us so my mum thinks it is not time to go. She’s been muddled recently so that makes it even harder so I am still taking one day at a time.

Anyway, even though I can’t make a decision, it helps knowing that there are people out there to ramble on to so thankyou!

I just so wish the topic we share in common was not the reason that brought a caring bunch of people together.

Ann xx

347

Hi Ann

Replying to your question about home versis hospice. Not sure I can give any advice as I have no knowledge of a hospice so can only let you know my family’s situation so you have different viewpoints when decisions are being made in your family.

My mum agreed to go into hospital a few days before she passed, although we hoped she was going in to get better. Caroline’s words match my own in that I am not very practical. Even though my mum passed in hospital, intensive care were absolutely amazing in their care of my mum and their support of me and my dad. As I do not have any other immediate family, looking back I am so glad we had their support knowing they were making sure my mum was comfortable and not in any pain and explaining everything to me and my dad. I am sure my mum would have wanted to be at home but I do not have any regrets that it was hospital as I know everything possible was done for my mum to make her comfortable and not in pain. However my mum being in hospital was down to the emergency of events in the last few days rather than any plan.

You and your mum are in my thoughts.
Xxx

348

Hi Jaydee

Thankyou for the response. I am so pleased you felt looked after in the hospital and your mum was too. There are some real angels that work in the care service thankfully.

My mum was a nurse previously and had cared for my dad for a decade before he died but I know the pressure it can cause. I am definitely more comfortable with a spreadsheet or laptop than an incontinence pad but I seem to have accidentally become hands on practical this last year. That’s why I would like to see it through at home but also worry about a crisis point that may come up that i haven’t even thought of. Or just burning out myself.

Anyway, I really appreciate you sharing your experiences.

Ann xx

349

Hi Ann,

Such a toughie but you are on top of it.

The ‘authority’ will never say what you should do these days whereas years ago they would have done. I think there is an inbuilt worry of later criticism or legal action which I do understand but that does not help families who need expert advice on what to do for the best.

Maybe a period of respite would be the best way forward - try it out and see how it feels. That would give you and your mum a chance to ask all the questions you have and make a plan going forward.

In the end, if your Mum becomes unable to make the decision (does not have capacity) the choice does come down to you and your family. My brother and I made the decisions for Mum towards the end as she could not. I can understand the feeling of ‘we have come this far’ but do you know the likely timescale for your Mum?

Whatever you decide please be kind to yourself. You have cared for your mum at home for 9 months now and all of that on top of the loss of your dad. Sometimes we cannot carry on but we feel that admitting that is admitting defeat - it is not.

I suppose you have to do what I do at work - person-centred plans - and try to objectively decide what is best for your Mum. It is not always easy to answer that question but sometimes writing it down can help make sense of it all - a pros and cons list. If your mum is ok with going into a hospice I think I would give it a go - you always have the option to change your mind and bring Mum back home.

I think that is the comforting thing - no decision is irreversible so try to balance things off.

Take care and love to you and your mum.

Caroline xxx

350

Hi,

I agree - sometimes events take over and decisions are made for us.

In March 2016 my mum had a kidney crisis and went into kidney failure. She was rushed into hospital and we were told she would not last the night - but she did - the reason for mentioning this is about the care in hospital.

Mum was superbly cared for in A&E and the following day she was transferred to a side room on a ward. The care she received and the support we received was amazing - she came back from the brink and was then transferred to a regular ward.

On the regular ward I was upset by the lack of staff and care but that is another story.

What I wanted to say is that hospitals can be a positive experience but I think it varies from hospital to hospital.

All information and experiences posted on her are valuable as it gives multiple viewpoints to help people make decisions.

Caroline xxx

351

Reading this, Ann, if your preference is for Mum to stay at home maybe you could start asking for more support?

Crisis points are often less likely than we think. Your mum is under the care of professionals already and they will be on top of this for you.

Just take care.

Caroline

352

My dad died in hospital and it was traumatic and horrible but it was out of my control as dad couldn’t even sit up let alone make it out of the hospital so there was no choice. Medically he was in the best place at the time but if I knew he was coming to the end of his life I would have moved heaven and earth for him to end his life in familiar surroundings, i.e at home in his own bed. I have quite a strong belief on this now but is only my personal one. So only talking through my own experience and having experienced for the first time in 58 years watching someone die, I would have to choose home.

Sometimes there is no choice but when it is my time, I pray it’s at home.

I remember the first week my dad was admitted when he was coherent and I thought he was going to be going home I asked dad if he would like an electric bed at home and his words were " no why would I would want a bed that reminds me of a hospital? When you get to my age you want peace and comfort and hospitals don’t bring you that"

End of life means no medication is going to fix you and it is about comfort surroundings and love. We all work hard to make a home and it becomes our sanctuary in times of stress, distress and troubled times. Home is where the heart is.

If you can do it, make it happen our parents deserve that.

xxxx

353

I apologise if my opinion/belief comes across as too strong but I can’t sit on the fence on this as it’s too important. If I have as much as a headache I want my own home and bed let alone if I was elderly tired, weak and possibly scared and knowing I was dying. Our parents don’t want to become a burden to us but it’s not about us. We will cope because we are still here

xxx

354

Hi Lyn,

Your opinion is much valued and not too strong. Your strength of expression comes from the experiences you had and that is a positive thing for those going through similar situations.

I honestly totally agree with what you say. Home is where we all want to be when we are poorly. My mum always took great comfort from being in her own home and I think most people do.

Our parents never wanted to be a burden - my mum often verbalised this over the years - but you are right that it is all about them not us.

I was not able to take my Mum home for the end and that I do regret but I had no choice as it happened. Events decided for me. If I could have done I would have done but I also feel that sometimes we have to choose a different option at the time due to the crisis situation.

The one thing that shines thorough all of these posts is that the love for our parents is what is driving us and this is why we want to do our best for them. We won’t all get it right but it won’t be for a lack of love.

I love the fact that we can post our feelings clearly on here and no one judges us. This is so important as we should all be able to express our views and opinions as that is what we all need.

Take care Lyn - you are a very special person.

Caroline xxx

355

Hi Lyn

Thinking of you tomorrow on your dad’s birthday. As you say, another first for you to get through in such a short space of time.

The memorial bench sounds like it is somewhere you will be able to sit and reflect upon in time happy memories of your lovely dad and chat to your dad, with his special friend Sammy at your side.

I have been so sorry to hear about your family situation which must be causing you so much stress when you are already so upset.

Sending you strength for tomorrow

Xxx

356

Dear Ann
I was in the very fortunate position of being able to keep my mum at home right up until she died. She developed sepsis as the result of a UTI six months before she died. After she was discharged from hospital I naively thought that I might be able to restore her to a reasonable state of health but it wasn’t to be. She had a reasonably good six months but started deteriorating about two weeks before she died and the last week was absolutely harrowing.

My circumstances could be completely different from yours. I am retired so was able to devote myself fully to mum and I have two sisters - also retired -who were in the same position so there was all the support from family that I could have wished for. On top of this I got good support from social services - carers coming in four times a day to help with getting her washed and hoisted from bed to chair and so on. In the last few days when we needed it we also got great support from our GP and district nurse. On the final night the Marie Curie nurse was nothing short of an angel come down from heaven.

Mum suffered from terminal agitation in the last week or so. On the final day she was on a syringe driver which didn’t seem to be helping very much. The GP told me mum was getting better care at home than she would ever get in a hospital but the question of a hospice wasn’t discussed. It seems that home is better than hospital but I couldn’t say whether hospice is better than home. Also my mum had a condition that didn’t need much in the way of nursing/medical intervention other than the palliative care and love someone essentially dying of old age needs. I was also calmer for having her at home as I was in charge of things myself and didn’t have to feel I was troubling nurses.

In short - (1) I was retired, (2) I had great support, and (3) mum had a condition that didn’t require specialist nursing other than the syringe driver. I am not sure we could have kept her at home if these three conditions had not been met. And even with all this support the emotional toll on me was getting unbearable.

Based on my own experience, my advice to you would be to discuss things with a Marie Curie or MacMillan nurse - you may have to get your GP or district nurse to refer you. What support they can offer may be something you could factor into your decision. I don’t think you ever reach a position where there are no "if only"s. You always think back and wonder should you have done something differently. But you can only do your best in the circumstances you’re actually faced with at the time.

You’re a good person, Ann. Remember this.
Hugs and Kisses
Marigold
XXX

357

Hi Marigold,

Such a sensible and helpful summary. How old was your mum?

I think it highlights that each case is different and much depends on individual health issues and age. My mum was 96 and, as you say, needed care associated with old age and she had chronic kidney disease too, but her had lived at stage 5 for about 8 years !

I also agree that we all look back and question if we could have done more, etc - just part of being human I think.

Caroline xxx

358

Dear Lyn

I really cannot fathom your mum and your brother. It’s not a good way to live your life.

Your little garden with its bench and daffodils strikes me as being a really beautiful place and I hope you find peace there tomorrow. I know it will be a sad peace but it will be a peace that comes with the knowledge that you and your dad seem to have had - and still have - this most incredible bond. This is the right way to live.

You’ll be in my thoughts and prayers.
Marigold
XXX

359

Hi Lyn.

I can hear the bird sing this morning and it has made me think about your cuppa today in your special place. I hope through probably a few tears, your dad’s special day will hold some lovely memories for you too. Nothing can take the feeling of love and our memories from us so I hope you get some peace on your bench.

Thankyou for your straight talking too. It is exactly what I need as I can’t see the wood for the trees at the moment and everyone’s real experiences are so valuable.

Hi Marigold

Again, thank you for the honest advice and sharing your experience. My situation is different as I am an only child, I run my own business and I have a 5 year old. Caring for my mum is an honour but to be honest, my cracks are really starting to show, and on my husband too. The only person ok is my son and I just wish we could all deal with tough situations as well as a 5 year old!

Hi Caroline

Sage advice as ever. Thankyou. I think your post highlighted to me that i will keep muddling through but if there is a crisis, I will just deal with it at the time and realise what will be will be but I will seek more help too. Marie Curie have been wonderful and the carers we have are great, just need to make sure I am getting more time off somehow to keep my sanity and my little family together through it all.

Thankyou all so much for being out there. I will raise a cup of tea to you all now.

Ann xx

360

Morning Lyn,

Happy birthday to your lovely dad.

Thinking of you.

Caroline xxx