Hi Joanne,

Welcome to Cancer Chat. Firstly, I'm so sorry to read what you're going through. This sounds like such an incredibly tough situation and I can totally understand your dilemma.

I don't want to advise particularly one way or the other as it's such a personal decision and I also wouldn't want to advise on issues around your mother's care or health.

I would suggest noting down the relevant points for each scenario (bringing her home or not) - according to medical, practical, emotional points. This may help to weigh up each scenario, and also help you to realise what's most important (e.g. are some of the emotional aspects more important than some of the practical aspects).

While it's hard to know how you'll feel in future, try to think about what it is you would like to have done, or perhaps wish you hadn't done, and this may help guide a decision.

I would also suggest getting advice from a variety of sources, as you no doubt have done and are doing. This includes those you live with and who are close to you - which it sounds like you've done - as well as other friends and family, professionals (e.g. the palliative community team), and also us here on Cancer Chat.

Whatever you decide, try to be confident in your decision and focus on doing the best you can with it.

I know you haven't had further replies to your post yet but hopefully you will soon - my reply here will boost your post so more people will see it. I would also encourage you to browse or search the forum (using the button in the blue bar above) for other similar discussions you may wish to join.

Do make sure you lok after yourself among all this, too - speaking to others, taking some time for yourself, and perhaps making further use of this forum if it's a useful outlet for you.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi Joanne,

I'm so sorry to read about your dilemma and just wanted to reply, whether it's helpful or not I can't say.

I haven't had any experience of your position but I have been a carer for my mum & mum-in-law so I know a little about what you will have to consider. I cared for mum-in-law, who is now in the late stage of dementia, for the first 4 years of her illness. She went into a care home 5 years ago after a spell in hospital & her needs became more complex (she is now 96). We don't know when she may pass away as the doctor keeps thinking it could be imminent (since January). Her care home has been in lockdown for 6 weeks and I know how hard it is on family - fortunately mil is semi comatose so has no idea who or when anyone is there which makes it a little easier for us to know she won't be distressed.

My mum was different in that she was a fit & healthy 76 yr old who suddenly suffered backache and was diagnosed with secondary timours on the spine - ovarian cancer. She spent 4 weeks in hospital after collapsing at home with spinal compression & she was discharged home, paralysed and with a few months to live. Fortunately she had all the home care, nursing care and nursing aids available but managed only 10 days before taking a turn for the worse (the steroids & her diabetes caused a problem). She was taken back into hospital & sadly died there 2 weeks later.

So, knowing the different problems & needs arising from this I think Ben's advice is good. Factor in that you don't know how long your mum has left because of the cancer and the demands of someone with dementia (is she at risk of falls) and this could mean weeks of you getting very little time to sleep, especially with such a small care package that's been offered. You also have the added risk of someone from your family/child carer bringing the virus into your home & passing it to you and/or your mum. If you became ill, who would then care for your mum & your little one? It may seem an option now but it only takes one small thing for it to become completely unmanageable. If you can get Adult Social Services to offer more support ie. 4 visits a day it would help. 

With regard to what problems may come down the line - from the point of view of your mum's dementia - my mum-in-law was toileted by myself and the carers. However, one day I couldn't lift her from her chair into the wheelchair - her arms & legs became rigid (like a dog who digs their heels in when they don't want to move) and she became distressed (it had never happened before). It took all my strength & several attempts before I managed to get her to the toilet. Once finished, it happened again & I couldn't get her up & into the wheelchair. She was 8 stone & I was 13 stone but I still couldn't move her due to her rigidity. I had to call her carer & ask her to come & help me. MIL ended up in hospital that day with a suspected chest infection. Four weeks later she was discharged into a care home because her dementia had got far worse. The kind nursing sister (thankfully still there after 5 years) explained that mil's rigidity was something that happens when the dementia progresses to late stage - the brain tells the limbs to move but the limbs can't receive the message so the person gets distressed because they know what they want to do & can't do it. It's distressing to see so I just wanted to let you know what you may face at some point.

I know that you will be thinking of every little pro & con to this decision but the end decision has to be something that you feel happiest with & won't regret in the years ahead. My heart goes out to you and I hope you & your mum get to share more precious time together.

Angie

Hi Ben,

Thanks so much for that reply, I really appreciate it. And your advice to be confident in the decision either way is helpful and I'll definitely keep it in mind.

Thanks again,

Joanne

Hi Angie,

Thanks so much for replying and sharing your experience. My mum has that rigidity because of the dementia and Parkinson's and before I could manage her on my own but now she needs two people for all transfers. The home that she's in had a Covid death this morning so the virus is in there now and I'm not even allowed to open the window of her room and can't bring her any food (she won't eat the food in the nursing home) so the decision has sort of been made for us now and I'll be bringing her back to home and living with her there as soon as the hospital bed arrives in the next few days and I've gotten the house ready for us all to move into. .

Thanks again,

Joanne

Hi Joanne,

My best wishes to you at this really difficult time. I hope you get all the help that you need and that the weeks ahead with your mum are full of love & memories. Take care of yourself too,

Angie x

Hi Joanne,

Such a horrible dilemma. Before you decide, please check what community care is available locally, especially palliative care in this extraordinary time. This varies so much by locality but resources are being stripped out of all NHS services to staff the Covid wards and in some places as much as 30% of the workforce is unavailable due to Covid-related issues.

My Mum’s end of life experience at home was a good one but she had her GP, practice nurse, district nurse, MacMillan nurses and Marie Cure nurses supporting her and my Dad (plus family). 

It’s hard to decide which end of life care pathway to go down at the best of times but there is a real risk that if you take her home there will be literally no support available. This may be why your Mum fears being moved. Sorry to be so blunt. 

My wife hasn’t seen her Mum for over a month now as her care home went into lockdown with no visitors, not even to wave through windows, since the week before the official lockdown occurred. 

Best wishes

Dave

I have to agree with Dave. Please please check that there is going to be any support at all.  My Mum was given a terminal cancer diagnosis over the phone three weeks ago.  The only support she has had is a single phone call from a Macmillan Nurse, who isn't allowed to do home visits.  The GP isn't doing home visits either.  She was just left alone (I stayed with her at first, but my home and family are some distance away).  Luckily my Dad's brilliant nursing home, which is local to them, saw the urgency of the situation and put another bed in his room for her, even though they were full.  She went in two days ago and is now receiving nursing care and they have organised pain relief.  

I am resigned to the fact that I will probably not see my Mum again and all we have is phone calls, but she has access to skilled palliative care in the home, which I couldn't provide and which just isn't available in the community at this time, believe me it is brutal the way she was simply abandoned. 

Thanks so much for replying and great to hear that you had such a good experience with your dad at home. That's really encouraging. 

We've made the decision to bring her home now and everything bar the profiling bed is in place. We're just waiting on a Covid swab result that was taken from her yesterday to come back. Hopefully it's negative and we can push ahead. If it's positive I don't know what we'll do to be honest so just working off the assumption that it won't be for now...

The question about what the nursing home can do that I can't is a good one - the 24/7 aspect of the care worries me. I've often spent the entire day, 8 hours + with her in the nursing home so I know what's needed during the day but am less sure what the needs will be at night and I also have a baby who breastfeeds 3 times during the night so have quite broken sleep as it is. Although that could be something that works in my favour I guess as I'm up during the night anyway so could check on her! I'm worried about managing her symptoms as well as the cancer progresses. I'm not a nurse and will only be getting advice on the phone during working hours. But if things get really bad the palliative team have said they can do a house visit - to fit a syringe driver for example - and they're very helpful on the phone. 

It feels like we're stepping on a cliff in lots of ways but I'm also starting to look forward to it as well. The constant body blows of the restrictions and changing goal posts as Covid saga has progressed has been awful. At least if we're at home we won't have that to contend with that anymore and will be able to regain a bit of control over the situation. And we'll be together. 
 

Thanks again,

Joanne
 

I completely understand your reasons for wanting your mum back home to care for her and my heart goes out to you at this terrible time and the decisions you are having to make. Remember there isn't a right or a wrong way of doing this.

My mum passed away just over a year ago from peritoneal cancer and we had intended to keep her at home until the very end which is what she wanted. My sister is a nurse and I am a physio and between ourselves and Dad felt we could manage whatever came our way with the help of the Community Palliative Care Team. Despite having the low profile bed and commode delivered and Mum having a syringe driver, the final weeks were incredibly hard and there were multiple times we had to ring the Team for urgent morphine injections, once it took almost 5 hours for them to arrive as they were short staffed and busy with another patient. 

Two weeks before she died she was admitted into the local hospice for medication review but didn't manage to come home again. The benefit of her being there was that she told us she felt safe with the specialist staff around her and the diamorphine bolus used in her final hours was administered very quickly. My sister and I both agreed that had she been at home we wouldn't have been able to see her in so much pain waiting for staff to arrive and in all likelihood would have administered it to her ourselves from the District Nurses kit left on site - a horrible dilemma to be in.

The drawbacks were that we were not with her 24hrs a day like we could have been at home and she was in a clinical setting which we didn't want for her. Generally death is not like it is portrayed in films and can be traumatic and exhausting for all concerned. I suppose there will be pros and cons with each choice but what I learnt from our experience of dying from cancer is that it is imperitive to have a plan in place with the palliative care consultant of the medications required at end of life. These should be delivered by the District Nurse team in a box to your address and you need to be aware of what they are all for and how quickly you can get them administered. If you need morphine ask for it to be set up on a syringe driver or cutaneous patches rather than have to wait for IV administration on a call out. Also be very careful with manual handling, mum wasn't heavy but when sedated it took 3 of us to manouver her safely, she also required catheterisation in the last few days.

I would also urge you to speak with Marie Curie and Macmillan teams now and arrange support for you at home so that you have cover at night if required. Although we like to think we can cope alone the reality of nights of insomnia and full time caring stop you from functioning and thinking clearly. This will be an intensely emotional time regardless of where your mum is for her passing so I wish you both love and peace with this final phase of your lives together.

Xx