Hello, it’s been a while since I’ve logged in and checked in because it’s been rather a rollercoaster. To give you the brief overlay my father passed away last year in February 2024 and now my mother is ill, not eating and it’s not for lack of trying. Everyone in the family has been trying to get her to eat and the doctors say it’s not because she has problems swallowing but I suspect it is something psychological? I don’t know but also she has had the dietician try these build em up drinks and different foods but to no avail. Fast forward to now the doctors have said there is nothing else they can do they think her liver and kidneys are shutting down and basically they are looking at end of life care. They have said that to resuscitate her would cause more trauma to her body (she’s 84 now) and they won’t take her into hospital because it would cause even more trauma to her taking her back and forth to the hospital. When she gets discharged this week it’ll be to come home to die. She will get carer’s coming in 4 times a day and District Nurses will do an assessment for her needs and give her painkillers if she’s in too much pain. I’m just so lost.. I lost my dad and now I’m losing my mum as well a year later.. I don’t know what to expect and just want to know if there’s anyone out there who’s been through the same thing with their parent coming home to die?
Do you want to care for mum in her final stages? Would you prefer to be in a nursing home with 24/7 care where pain relief is available 24/7? Have the hospital arranged care at home through Continuing Healthcare, which can fund either nursing home care or care at home, all free. My mum was in a nearby nursing home, it was great, I was free from all the practicalities of nursing, and we were just mum and daughter again, after I’d supported mum to live at home for 30 years. Don’t be pushed into something you don’t want. Google “Signs of Dying” and there is lots of well written information.
@Jane_21111 so sad to hear this. My mum was sent home for end of life care but in the end she wanted to go into a hospice, and luckily they had a room for her. She was only there for five hours before she died.
She was OK at home with me until the last day or two when she just stopped being Mum. If you would prefer her to be in a hospice then make this known, there are not always places and she will get home care until then.
It was frightening as she neared the end, all I could do was keep her comfortable but she could not get out of bed. It is different for all of us at the end I think, so you need to take each day as it comes.
It is important though that you do not get forced into something you do not want to do. Talk about hospice placement if you feel this is better or a care home for this stage of care.
Sorry to be blunt, but have they given you any time line for the end of care?
You will get a lot of support here, sending hugs
@Jane_21111 Agree do not be emotionally forced into caring if you do not feel emotionally able to do it. Remember Carers and District Nurses will mean YOU being there 24/7 for however long it takes. It may not be easy or pleasant in the final stages? Is it worth investigating local hospices? She would have the medical support but you would still be able to be with her for as much time as you wanted to.
My 86 year old husband has always said he wants to die at home but NO WAY would I be prepared to have him home and be forced into the 24/7 care as not medically qualified.
Can only send cyber hugs.
@Jane_21111 Dad cared for Mum at home for many years and we were all with her at the end with District Nurses coming in regularly - but Dad had 3 private Carers who had been helping for ages and one of them spent the last 24 hours with her/and with us as she slipped away.
Dad was in hospital at the end and I was heading back to stay with him so he would not be alone when the came through to say I was too late.
M-i-L was on end of life care at home but the final night paramedics were called and she was rushed back into hospital where she slipped away next afternoon - that was nice becauae the family didn’t have to deal with anything and there was no pressure.
I would echo the question “do YOU want to care for her"?” as no-one can force you to do so. It can be exhausting and traumatic and you may find it far easier to just be Mum and Daughter as @Tiredanne said rather than having extra responsibilities. BB also mentioned Continuing Healthcare which is an option for you.
Ask the hospital to go through ALL the possibilities with you so YOU can make a choice rather than being presented with “this is what’s happening”.
My final advice is to spend time with Mum - just chat to her about happy times and memories. She may not always respond but it’s certain she will be able to hear you. My last evening with Dad was spent reciting prayers which he had known from a child and several times I saw his lips moving as he tried to join in so I am convinced he could still hear everything I said. If you have faith, it can also give you comfort, but at the end of the day, it’s what she would want.
Don’t wait until after mum has died before thinking about the funeral arrangements, especially which funeral director to use. I know it’s hard, but ten times harder when someone dies suddenly (my husband died suddenly when he was 58. Once you know who to use, have explained the situation and made basic contact to agree terms, make sure others know. Then when her time comes they will know what to do and when to do it. I told my funeral director to tell me what I needed to do, and when, including at the service. I’m usually very well organised, but needed all the support I could get, and so did my sons (one has learning difficulties). Make a note of who you spoke to etc. as it makes a tough time so much easier.
If you haven’t done so already, be sure to think about her finances, bringing everything together.
UPDATE: Thank you everyone for your advice in regards to end of life care for my mum. The more I think about it the more I think hospice might be the best place for her but I am under pressure from family to have her at home because we don’t want her dying among strangers and strange surroundings. In answer to some questions on here Mum already has a funeral arrangements in place along with her last will and testament which will be read by an allotted solicitor because of complications with finances. I handle all my mum’s finances so I know which banks she is with and savings. She also has debtors which will have to be paid off but she should have enough savings to cover it so it means that the house won’t go up as collateral to settle the debts. I have family members willing to come and help too so hopefully fingers crossed when my mum’s time does come it should go smoothly?
My dad had prostate cancer. The local hospice was amazing. He was only admitted for the last couple of weeks, but for a long time prior to that he had lots and lots of support, at a day centre where their own doctor saw him, checked to see if there were any changes, and arranged through their own system for him to have any new medication before he went home the same afternoon. His room was beautiful, overlooking a lovely garden tended by volunteers, but most of all qualified nurses, experts in palliative care, were always on duty able to tweak his medication without delay. I would urge you to get in touch with your local hospice and have a look round and talk to the staff, before dismissing the idea. Dad’s hospice also had a room where relatives could stay or just rest if needed. I would be happy to end my days in the same hospice, which I support as much as I can. Too often on the forum, what family say and what support they actually offer, so bear that in mind.
Hi @Jane_21111 I’ve only ever heard positive comments from people whose relatives have used the services of a hospice. They are experts in palliative care and ensuring people have a comfortable and dignified death and support the whole family too. As well as having rooms for people to stay in, many offer home care as well. Definitely worth considering. Nothing worse hanging on for the GP or district nurse to come out to administer/ change/increase the dose of pain relief etc. You may be able to convince your relatives that a hospice is best and it doesn’t mean strangers as you can all ensure she always has someone at her bedside.
However, whatever you decide, the forum is here for you. Take care.
I would strongly agree with those who have recommended planning ahead with a Hospice. You can discuss with them what you feel is best for Mum and they will be used to these situations so can take a lot of the stress and strain from you.
Please don’t be concerned about Mum being among strangers at the end as the staff are trained to put everyone at their ease.
One of our patients went into a hospice and his family came to thank us for attending his funeral and each of his daughters was in tears because of the loving care provided for him. THEY were kept fully informed and given plenty of warning when the staff thought the end was coming, so there was no need for that horrible “vigil” by one or more who then suddenly alert others. When Bill was unable to sit up properly, they obtained a light which played a pattern across the ceiling so he could focus on that. A small thing, but someone realised it helped him feel relaxed. Just one of the things the staff look out for.
I still wish I had got to be with Dad at the end, but it was during 2nd Lockdown and my brother had told everyone that visitors were banned - I checked with the hospital and found that was nonsense for someone on end-of-life care.
I’ve rambled a bit, but do please make contact with a local hospice - get the hospital to give you local contacts - and see what they can offer.
@Jane_21111 I am glad there are plans in place. The hospice my mum went to was wonderful and made her passing easy. They made her look beautiful again as I had focused on her basic care at home. Family may say they will help, from my experience, but they do not understand the pressure of being the carer at home, alone. Please thing carefully about what YOU need in this situation.Sending hugs
I too can only echo what others have already said.
Some years back my Aunt passed away in her local hospice - she had been there for a couple of weeks before the end and in that time received nothing but kindness and loving care from the Hospice nurses and Doctors. We were allowed to visit whenever we wanted and allowed to stay for as long as we wanted. She had a room that opened onto a pretty, private patio and, whilst she was able, could sit out there listening to the birds and admire the flowers.