Nothing prepares you for this, being told your loved one is dying and all you can do is watch. I barely sleep and the fear is so immense sometimes I feel I can’t breathe. After being badly let down by a hospice that certainly opened my eyes, we were offered the option of palliative care at home. I had to think this through after being so disillusioned so have tried desperately to care for my husband myself. My 2 daughters have disappeared off the face of the earth unwilling to offer support and now having decided to ask for help after reading others story of how supportive their palliative nurses were I am left reeling. After being promised that there would be help I’m left with nothing. I’ve had to chase medication and other necessary supplies myself and feel like I’m failing my husband because I’m not coping. Am I wrong to consider a care home so that he can get 24hr care before I end up having a breakdown?
if a care home is where he gets best care, yes.
I spent a lot of time in there with my mom and when I was unable, I had a nice lady from the Caribbean who was our carer. whatever is best for them. or bring in a carer to help you. I was overwhelmed sometimes and resentful … I couldn’t have managed it without “Bea”.
Thank you for replying, these decisions are so hard to make. I want what is best for my husband but feel so guilty and weak for not coping.
you have to be practical … caring for a baby is one thing … but a large human adult is MUCH harder. if you are caregiving at home, you need help. they also bring with them some cheery attitude which in such a household is needed.
Hi Jen, I was in the same position as you with my father, Care at home or a nursing home, i always thought it would be at home, but when it came to it cold hard facts had to be taken into account.
I’m not a nurse or medically trained, yes I’d do my best but was my care good enough? In the end I realised that in a nursing home there would be experienced staff there on hand 24/7, a wet pad could be changed straight away, if extra painkilling injection was needed the nurse was there to give it, if he fell out of bed there are staff there to deal with it, they’d know how to get medication into him etc…
Yes carers could come in at home but there not there for long & there gone.
So for me I had to put my feelings aside & do what was bed for my dad, I loved him so much that I wanted the best care he could get.
For me it was black and white, I’m not an experienced carer or medical professional, my dad deserved that care not me fumbling around not knowing what the hell I was doing and dad bearing the consequences of that.
Just my view of the though processing that I went through & looking back in the calm light of day I know I made the decision out of love.
Dear @Flower_garden
Thank you for sharing your experience with me, these decisions are not easy and a lot of the time we worry what others may think or judge us for. I worry day and night about my husband falling and particularly on the stairs as he often gets confused and being a very tall man I struggle to keep hold of him. As you pointed out we are not qualified nurses but still expected to give prescribed medicines and be responsible for that.
I was terrified when my husband was discharged from hospital in what they described as “ vulnerable with complex needs” and the hospice requires “ notice” for admission when end of life is imminent. This is not something you can put in your diary “ I will die on this day so please can I book my bed 2 weeks in advance please”
Every emotion conceivable is being felt and it is overwhelming, it’s a very lonely daunting process but it is a decision that must be explored to get the best possible outcome for both my husband & myself.
Thank you again xx
It’s the hardest decision I’ve ever made but I knew he would be better off with people who are experienced in looking after the sick, I visited every day to keep a check on the care being given, I knew I’d never have forgiven myself if he’d suffered because I didn’t know what I was doing.
Our preferred option was a hospice but no bed available.
Hello, my husband passed away at home on Boxing Day. He was supposed to be receiving palliative care from our local hospice/community nurses etc. Like you I felt completely abandoned by everyone - very little help forthcoming and the excuse was that staff were either on Xmas hols or had covid but that didn’t help us. Eventually on Xmas Day morning we had two lovely ladies from emergency adult care who came back again early evening and made him comfortable. Sadly during early hours of Boxing morning he passed away. One of the nurses from the hospice had actually said he was stable when she called briefly on Xmas Eve. I felt angry and let down as if I’d had more physical help perhaps I could have relaxed a bit and had a few peaceful hours with him at the end. I know anger is one of the stages of bereavement but have to say I felt very bitter towards the medical people.
Dear Davina, I am sorry to read your very sad message and my thoughts are with you. It is shocking and unbelievable that we are left in these dreadful situations to cope alone. I would never have thought this happened until I had my eyes opened and now hearing the same story again and again. A loss is hard enough without these very painful memories to deal with as nobody can be prepared for this kind of end.
Like you I feel very bitter towards the healthcare professionals that are shirking their responsibility and it makes me very angry.
Thank you for sharing your experience it has helped me to prepare for a battle with the drs and palliative care team, meanwhile I will have to seriously consider the care home rather than hope that somebody will be here to help in my husbands final days x
Dear @Jen64,
You are faced with a very difficult decision that only you can take. There is no right or wrong one, and there are pros and cons for every option. Everyone’s situation is different and those around them will have to find the best possible solution. There are so many different factors to consider, for example the type of your husband’s illness, the complexity of his care needs, his mental state, how long he is expected to live, but also your your own age, fitness and health, your financial situation, how much help to expect from family and friends - just to name a few.
Personally, I have seen different types of end of live care for loved ones . My dad died at home, after just one week, surrounded by his family and with good support of his GP and carers who came in 4 times a day. He also had all the equipment in place, such as a hospital bed. It was his wish to die at home, and we were able to grant him that wish by all working together.
My mum died in a hospice. She was in a care home, recovering from a broken hip but developed complications. We were not able to care for her at home and did not want her to die in the care home, so we asked for a hospice place where she spend her last week and the care there was fantastic. I am sorry to hear that you were let down by a hospice.
My mother in law had 4 months end of life care at home during the pandemic. She was a widow, living alone, in a house where it was possible to change one of the rooms near a wetroom and overlooking the garden to fit all the equipment that was needed. She had carers come in 4 times a day, with telephone support available from a hospice at home team, and at least one family member staying with her 24/7. We took it in turns. At times I found it very hard and I sometimes felt she would have received better care in a hospice, but she did not want to go there.
Based on my own experiences, looking after a loved one on your own I think is almost impossible unless it is for a very short time. If not, you will need to have a lot of support in place. You may have to keep knocking on doors to find out what help you can receive and how. If this is not possible, then please do not feel guilty for looking at alternatives. Your husband must know that you love him, and that you are trying to do what is best for both of you.
If you have not already looked at information on what support you can expect, the information on this NHS page may be useful to you:
It is good that you have joined this online community. I hope that you are finding it helpful to read other people’s posts and replies. Keep posting, there will always be someone who will respond.
xx Jo
@Jo64.thank you so much for this information it is very helpful. My husband has two terminal conditions and was told he had a few months to live back in October last year. He has fought incredibly hard to stay with me but he is now deteriorating quickly and I feel time is now against us. I have come to terms with this and he has said he does not wish to die at home as this would leave sad memories in our beautiful home and asked me to make sure I fulfil all of his wishes. I am doing my best to do everything on his wish list but the hospice side is so far by far the most difficult xx
It sounds like you and your husband are both wanting the same. It is really thoughtful of him that he does not want you to have sad memories of his life ending at home. You are both thinking about each other, and isn’t that what love and marriage is all about. I hope that things will work out for you and that you will soon get the help and support you both deserve.
Hello there, if there is no hospice bed but your husband could go into a care home then perhaps thats a good choice, at least you can sit quietly with him and have some quality time together. I just felt as though I was permanently trying to “keep it altogether” - rushing around, changing sheets, sorting out medication, phoning various people to get help etc. I loved him and didn’t mind caring for him but it was very hard and I sometimes wonder if he would have preferred things to be different. You hear about people having peaceful deaths at the hospice with family and friends all around to say their goodbyes and it all seems beautiful but sadly we didn’t have that experience. Wishing you strength and hopefully some much needed help.
Davina
I am sure you will cope (it seems we have to) and I wish you strength
Last year I lost my partner after caring for him for two years, it’s hard bloody work, I never got a full nights sleep, was exhausted, and was very near the end of coping, when he passed, whatever feels right for you, please do, no one unless they walk in your shoes knows the story , I had to chase medication, palliative care was very hit and miss, we had a carer come in for 1/4 hour a day, just because I wanted someone to check we were both still alive! And I was administrating medication, and I am not a nurse! They couldn’t do much in quarter of an hour, but we couldn’t afford more, his sons visits were very hit and miss, and friends, well most were too busy etc, at his funeral lots turned up, but where were they when we needed them! So whatever feels right to you, do , if you feel you are not coping, and this is the best solution, go for it, you have to put some of your needs first, you cannot get anything from an empty cup! Caring is 24/7, and please don’t feel any guilt, your only human, please keep in touch x
Hi @Caz6
Sorry for my late reply. My husband was rushed into hospital last weekend and only just returned home today. Thank you for sharing your very honest time caring for your partner and I am so sorry that you were left to cope alone. I am experiencing everything you described and have just been told this week that the care homes we had planned are unable to accept my husband due to his complex needs. So he is back home in my care until the next hospital admission which I anticipate won’t be long.
Like so many others I am being constantly let down by palliative care, our GP and family and to top it all he has come out of hospital with diarrhoea and hadn’t had a shower in the whole time he was in there. He begged to come home saying he felt uncared for and neglected. Our nhs is an absolute disgrace when it comes to vulnerable people coming to end of life and I am so angry but will have to carry on and hope that I can do my best in this desperate situation.
Thank goodness for this community and the support we can give each other x
I was so sorry to read this. You must be worried sick and your poor husband just wants to be comfortable in his own home. It seems we have to keep fighting for help when we should be having quality time with our loved ones before its too late.
I do hope you find some help very soon.
Davina x
Dear Jen, sorry to hear your husband has been in hospital again, when I was looking after Richard and becoming increasingly exhausted, I had a clip board in the kitchen, and made sure I only did what was really needed, dusting, window cleaning etc wasn’t essential, Richards appetite wasn’t good, but I tried to cook most days, preparing veggies on a tray on my lap, if I could sit, I did, if Richard slept, I rested, I always made sure kitchen and bathroom were done daily, but didn’t fret about other rooms too much, I ticked off each job as I did it, it made me feel I was in charge, and not so overwhelmed, I made sure I also sat and chatted to Richard, knowing our time was limited, we watched silly things on his I pad, like otters, swans etc, he could not concentrate for too long, sometimes I sat in bathroom and wept, understanding, that my body needed a release, then I put on my big girl knickers and hunkered down to it all again, it was hard bloody work, but I know I did, and was all I could be, afterwards I have taken time to understand my body has to now find it’s own body clock, I was up through the night so often, I need to be kind to me, and that’s taken time, please Jen only do what’s essential, enjoy what time you have left, talking, laughing if you can, at the silliest things, try and let any anger go, it’s too exhausting, and energy is precious, sending a big hug, to you both xx
Dear @Davina @Lonely @Caz6
Thank you so much for your replies I honestly don’t know how I would cope without the kindness from people on this forum. I didn’t realise until recently just how selfish my daughters are but then I think maybe it’s a generational thing because I’m seeing it being said by others.
I read someone who had written about being angry that the very people we clapped for on our doorsteps are now abandoning us at a time when we most need them. It seems covid has allowed many to just give up in what they once joined to provide care and compassion and I’m not sure if that is due to financial pressure or being overwhelmed by lack of staff and recourses. Whichever it is I see the detrimental effect it is having on the dying and relatives struggling to cope.
I think it also reminds us of our own mortality and I am now very afraid of what lies ahead for me. I will battle on to give my husband everything I can to reach a comfortable and dignified end and try not to think to much about what happens after that.
Sending much love to you all xx
Thank you for writing this, bits made me chuckle, you did so well, it’s the hardest job ever, heartbreaking and emotional, exhausting, but we wouldn’t have had it otherwise, I now have a bag packed too, take care, sending you a big hug x