Close to the end for my dad

[Miserable123455]

My lovely dad was diagnosed with Alzheimer’s in 2019. He’s only 75 and had been very fit and reasonably well. He moved into a nursing home in November and we have been very happy with his care.

In Feb/March time he started falling and after one particularly bad fall and a bump to his head he has declined very quickly.

He is now bed bound, he cannot walk or sit, he can no longer speak and he sleeps for the majority of the day and night. He eats small meals but this is getting less. He is skin and bones and incredibly frail. His swallowing is also deteriorating. He is often cold and looks very poorly. But, he’s comfortable and peaceful.

We feel he is close to the end now but the nurses on the home seem to down play it. Mum took a phone call on Monday from a nurse practitioner to say he’d been allocated chc funding and she no longer had to pay for his care. Mum asked was there anything she needed to do and the nurse said “just hold his hand”. He’d been assessed previously and turned down but we didn’t even know he’d been assessed again. So she asked if this meant he was at and of life and the nurse on his ward said no it’s just because we need to inject his meds.

Then yesterday a different nurse from my dad’s ward rang mum and said we wanted to let you know that the doctor has seen my dad that morning and he was now on palliative care. Mum asked if that was the same as end of life care and he just said yes it’s basically the same thing.

I don’t know what questions to ask or what to think. If we are looking at weeks then we want to make arrangements for his siblings and grandchildren to visit if they feel able to. He looks very sick to me and if the end is close I’d like to take some time off work to be there with him as much as I can. Is it unreasonable to ask for more from the nurses on the ward and see if we can find out realistically how much time we have with him.

They really are the most wonderful carers but I wonder if they’re trying to protect my mum and sparing her the sadness for as long as possible.

sorry for the rambling post - I just don’t know what to expect and want to do everything right for my precious dad as he comes to the end of his life. Any advice much appreciated. Thanks x

I would ask to see the dr, either ask for contact details so you can ring them or ask for them to visit again and you know when so you can attend. It feels like you're really not being given much information

Thanks, that’s a good suggestion. We’re heading there today so I will ask. I have poa, I think my poor mum is so overwhelmed and sad that she struggles to take in what’s being said. The two phone calls came completely out of the blue so she was taken off guard.

I should add that his nursing home is almost 40 minute drive from our home so we can’t get there massively quickly if something urgent happened which is why we feel we need to be prepared. We both want to be with him as much as we can and hopefully when the end comes.

Ime they don’t state how long they might live as it’s too difficult to tell . My family member had had a physical outdoors job so was big and strong -he lay for weeks before passing. Was on a morphine drip. I think they don’t know, even the doctors

Thank you. That makes sense. I’m just scared of doing the wrong thing by him.

Ask the GP for an honest conversation about what to expect in the near future...

Why is he 40 minutes away from his family? Would he experience distress or disruption if moved closer to the family? I would be considering this if possible as he needs his family around him now.

Thank you. We live in a very small rural town with very little choice or availability. He initially went for respite care in a home very close to us but at the time he was very mobile, very strong and very restless and confused. They told us they couldn’t meet his needs in the long term so social services and the mental health team helped us to find somewhere else. This home was the only one that seemed suitable and had space. At the time his needs were a bit unusual as his body was strong and very mobile but his dementia was very advanced. Although his behaviour was normal for someone with Alzheimer’s they didn’t seem to be able to cope with him. For example he’d wander into other residents rooms, he could be agressive when having care done.

although it’s far from us, his care is brilliant and it feels like a family to us. We didn’t know he would suddenly deteriorate as fast as he has.

Mum and I have spoken about maybe bringing him home and having carers but I don’t know if this would be possible at this stage. I think we should speak to his social worker too.

I’m so sorry to read this. I’m in a similar situation with my Mum. Bed bound, eats tiny amounts if fed, she’s skin and bone. She was put on end of life care with CHC funding at the beginning of December, but like you, the staff at her home are upbeat on how she is, and Dr says ‘no change’ - I get the impression that end of life in Dementia patients is difficult to determine.

Thank you, I’m so sorry you’re going through this too. I read some thing that brought me some comfort and it was how these final stages of sleep and resting in bed were almost a relief from the restlessness and confusion he’s battled with for so many years. That resonates for me.

We spent the day with dad yesterday. He was so bright and alert. He ate all his lunch and a big sponge pudding and custard. The carers got him up and we spent a few hours with him in the lounge. They had some lovely entertainment and dad even joined in at times. I’ve not seen him as bright as he was yesterday for a long time. My face hurt from smiling and laughing so much. I took some lovely pictures of him and it’s meant the world to me and mum.

Thank you for all you help and advice.

Thank you for sharing that - it’s really helped me to make sense of things

Glad he seemed perky, but perhaps brace yourselves for it being a last hurrah

My dad ate nothing for two months before he passed, taking only small amounts of liquid.

We were 30 minutes away but had about two hours with him once we received the phone call.

The nursing home never gave us any timeline - I don't think they can.

Depending on age of grandchildren I'd be a bit wary of having grandchildren visit as it can be a bit of a shock for them. And if they do visit, only for a short time.

It's awful this waiting time.

If you do 'miss' the time of his passing please don't beat yourselves up.

Be kind to yourselves.

Thank you, it had crossed my mind that this might be the last time we see him like this. At one point he had tears rolling silently down his cheeks. I asked if he was crying and he said, I think I might be! I’ve never seen him cry and he hasn’t spoken coherently like that for about weeks now.

My children, his grandchildren are all young adults now. My youngest is 15 and autistic and they were best friends growing up. He’s been to see him and has been upset but is determined to keep seeing him as often as possible - for short visits. Sometimes they just sit quietly and he holds his hand. He does get tearful when we have to leave but I’m so proud of how he’s handling it. Last time one the carers came and hugged my son and sat with my dad as we left so he wouldn’t be leaving him alone. My eldest daughter is 22 and she has been to see my dad but admits it makes her scared and sad so she comes now and then when she feels up to it, with no pressure or expectation. My middle daughter is away at uni and hasn’t seen him since his rapid decline. But I know she would want to say goodbye if she can.

Thank you for your advice and I’m sorry you know all too well the sadness that comes with this awful illness.

Hi @Miserable123455 I just wanted to say sorry, but also my dad died this way too. He was very old- in his 90s.
He was admitted to hospital after a fall for a check up although there was nothing wrong.

His dementia was one that was similar to Parkinson's and once he was in hospital he wasn't getting any exercise to help his limited movement and within 2 weeks he lost a huge amount of muscle.

He stopped eating and I visited him within 4 days of his death. He was on a drip for fluids. He was sleeping a lot and didn't recognise me. (I'd driven 300 miles as family said he was deteriorating.)

He died after almost 3 weeks in hospital. A few days before his death we asked the doctors to stop doing observations like BP and blood tests as there was no point and it distressed him and he became agitated.

I'm so sorry as your Dad is younger.

How is your dad today op? I hope he's peaceful.

Your ds sounds lovely to want to be with his grandad. One of mine sounds similar and was so good at sitting with his granny when she was dying. Just sitting there holding her hand and quietly chatting to her. My other sons were less comfortable with being with her so close to the end. Its so hard for everyone.

He’s very tired today and slept during most of our visit. He’s struggling to swallow and coughing and chocking on is liquids. Mum thought he sounded a bit chesty. He’s having kind of spasms and reaching out for things but otherwise very peaceful and not at all distressed or in pain.

I feel very sad tonight and just want to get into bed and sleep but my son is about to start GCSEs so we’re revising instead. He has been brilliant and I’m very proud of his maturity.. that can’t always be said so I feel extra proud of him and I know my dad would be too.

My dad has always been very young for his age, physically and in his outlook. He loved the outdoors particularly skiing and hiking. He’s hiked all through Nepal and India. He really has lived a very happy life with lots of friends and he kept active for as long as he possibly could with the help of his friends. I just wish it had been longer. It’s awful at any age but somehow it seems extra unfair as he really did love life and worked hard to keep himself fit and well.

Really sorry to read this. I’d say once the ability to swallow declines it can be quite quick. My friend died recently and she was on liquids for 2wks, then in the last 4 days wasn’t even taking in yoghurt.

I just wanted to flag your son may be able to apply for ‘special consideration’ for his GCSE’s, as he is going through this during exams. It’s only something like 2% but it’s worth emailing school exams officer to ask him/her to apply on your son’s behalf.

Finally, remember to take care of yourself at this difficult time. A nice bath, or a walk to clear your thoughts, all helps.

Thank you. I’ve contacted sons school and they’ve asked me to keep them updated. Thanks for the advice.
The home have asked if they could move him to a different room that become available. They’ve said it’ll be easier for them as it’s next door to the nurses station. His current room is lovely. It has big floor to ceiling windows and looks out onto willow trees. We’ve said no because his room is so nice and he’s settled. Not sure if we should have said yes but they said they needed to know within the hour.

My DH was told every time his DM, with dementia, went into hospital (5 times) that they didn’t expect her to come back to her care home but she proved them wrong every time except the last time (chest infections every time she was hospitalised). We were lucky that the a&e doctor called us, in the middle of the night, to say she didn’t expect DM to last. We jumped out of bed and within two hours DM had passed.
My DH is still grateful he was called, in time, to hold her hand.

I'm no expert but went through similar with my DF a year or so ago. It's very hard for the carers to say how near to the end he is-we asked advice re medical POA, ie do we stop all medical intervention should he get an illness like pneumonia, covid, etc. so it was agreed that there would be nothing more than pain relief from that point. He had paracetamol and morphine regularly and this was increased in the last couple of weeks. I queried what on earth Paracetamol would do to help him by this point but apparently it helps the morphine work more efficiently which was interesting. I actually made a camp on the floor next to his bed for the last few nights as I knew they were short staffed at times - especially the weekends, and didn't want to think of him suffering or in pain even for five minutes, should his morphine be late or forgotten (it wasn't). He slept most of the last week and I continued to ask lots of questions. The death process (emotions aside) was quite fascinating to me, and the stages are well known to the palliative nurses and carers. Changes in skin colour, smell, (like a sweet smell), sleeping a lot more, skin bruising in places etc.. the palliative nurse explained all the changes to me because I wanted to know. I'm so glad I spent that time and basically watched my beloved dad slip away so peacefully. He was in no pain, and his last 'coherent' articulation was to show pleasure at my son coming to see him about a week/10 days before that. He had Parkinson's, Lewy Body dementia and lastly pancreatic cancer, albeit he didn't know of that last diagnosis. I adored him, and that time was so precious. The selfish bastard actually chose to take his last breath on my birthday but we did kind of find the humour in that! I think after a long illness that renders your loved one zero quality of life, death is a welcome relief, or at least it was in DF's case. He too used to let tears roll down his face. He wanted to die. That broke me. He never did cry in real life, ever. Keep faith that he'll be ok OP. Ask lots of questions and don't feel bad about it. Witnessing this made me so much less fearful of my own death. ❤️

Your dad sounds like an amazing man who has lived a lovely and interesting life.

I found myself in a similar situation to you with my mum, OP, and it made me feel better that I'd told her what a great mum she'd been and that I understood she needed to leave and I'd see her soon. This was because I was worried that I wouldn't be there at the end for some reason and it would have been left unsaid. I'm not sure if this might help you in case your lovely dad deteriorates whilst you're not with him. At least then you will have told him what you needed to tell him. Sending love, it's tough.

He’s not been eating much over the past few days. The nurses have said he’s on end of life care now. We’ve spent a lovely day with him today. He was able to sit up and join in a VE Day picnic and his brother came with us to visit which was wonderful. I gave him a tiny drink of sherry. Dad was reacting much less than previously and slept for all of the morning. We struggled to wake him for his lunch but he was brighter in the afternoon.

He has his food puréed now and they’ve started to add thickener to his liquids. He doesn’t really want to eat at all I don’t think. The nurse has asked to speak to my mum and I tomorrow about funeral details. I think they need to know who to contact etc. If it happened during the night. I’m not sure though and was taken by surprise to be honest. He is still very very peaceful and not in any distress at all. I hope he stays this way.

Thank you all for the help and advice. X

Morning; I just wanted to say thank you for all your help and advice. My dad died very peacefully on Wednesday morning. We didn’t make it back in time to be with him as he took his last breath but we’d been with him in his last days and throughout his awful illness. The nurse and carers who were with him said he was very calm.
thank you all again: x

Sorry for your loss . Your love for him shone out of your posts .