Mum has been doing well in her nursing home although the disease was progressing as you’d expect and she began to lose quite a lot of weight and a few other things started to deteriorate. In December I got a call that they were calling an ambulance as she had low blood pressure and was a bit unresponsive. Lo and behold it turned out to be sepsis for the third time from a UTI. We got the usual from the hospital that she’s very unwell and we should be prepared but we’ve had this conversation each time with sepsis and each time she’s amazingly recovered but her dementia took a dip. Therefore I wasn’t too worried and then a week later she was back in the nursing home thankfully. I went to visit and she didn’t really communicate at all and so I kept the visit short as I think she was still recovering and needed her rest. A couple of days later I visited on Christmas Day and again she didn’t speak and the nurse in the NH said they had struggled to get her to eat much and did I think I could try and I managed to get her to have a few Chocolates but I noticed it was taking her a long time to eat then and at times seem to hold in her mouth so let the nurse know and my mum fell asleep so we left. I then got a call the day after Boxing Day that she had covid and was okay but just to let us know and I thought that could explain her quiet behaviour and reduced appetite. About 6 days later she tested negative and I was told she was doing well. I was then feeling unwell so couldn’t visit for two weeks but went to see her yesterday and if it was possible she was even thinner. She had absolutely no recognition of me and she looked like she had lost all the light from her eyes. She didn’t speak and almost as soon as she was with us in her room she was Asleep in her wheelchair (she’s not walked since last march). She woke up for 30 seconds or so every so often to look at me and my husband and then straight back to sleep for the whole visit which she hasn’t done before. She was coughing a bit and it sounded like she was struggling a little to know how to clear her throat. I got her some water and she took it from me and held to her lips and then didn’t drink and gave it back. I then got myself a water and took a sip to almost remind her incase she needed the prompt but she wouldn’t take the water again. The Nurse then came in and said she hasn’t been eating much and she was now being given ensure compact drinks. And could I try and get her to have some as she hasn’t eaten so far that day. Every time I gave it to mum when she did open her eyes she wouldn’t take it and just closed her eyes again. She had a couple of moments where eyes closed she leaned forward in her chair and she would cross and uncross her legs over but almost forget or get too tired halfway into the movement and hold the leg in the air before dropping it down or remembering to cross it back. We stayed for a while but I felt bad like she kept waking to chrck if we were still there and I think she would rather of just sleep so we got up to go and usually she would at least look at us leaving but nothing. I then spoke to the nurse and she said mums appetite hasn’t been good since she came out of hospital and she hasn’t been singing like she usually would and wasn’t acknowledging anyone and wasn’t herself at all and that they had noticed how thin she was getting. The nurse then just left the conversation as they would keep me updated. I’ve been reading this forum for many years and know that we can’t ever put precisely timings or stages in anything as it’s just crazy how different this disease is one person to the next but I do wonder if we are perhaps heading into the slowing down process and her heading towards the end? This just feels different to other times as throughout it all she’s never really stopped eating or had such a reduced appetite even when she was in with sepsis the multiple times nurses would joke that she still had such a great appetite. Just to note as well last year she had sepsis and covid twice in two months so I so think it’s taken a toll. I feel like maybe I want to ask for more information from the nursing home but they are very trying to remain positive which is great but sometimes you just want to know what’s what. Every now and again you catch a nurse or carer whose a bit more willingly to be more open with informations. Sorry for the essay just as ever feeling lost in all this! X
Lots of questions
- Thread starter Rackjw
- Start date
Hello @Rackjw
Im sorry to hear your mum has been so unwell. As dementia advances infections can really take their toll and it may be that the last infections have overwhelmed your mum. It does sound very much like she is approaching end of life, but even so, its difficult to put a time on it.
Rather than talking to the carers, I would try and arrange to speak to the homes GP and see what they think
Im sorry to hear your mum has been so unwell. As dementia advances infections can really take their toll and it may be that the last infections have overwhelmed your mum. It does sound very much like she is approaching end of life, but even so, its difficult to put a time on it.
Rather than talking to the carers, I would try and arrange to speak to the homes GP and see what they think
Hi @Rackjw . I'm sorry to read what has been going on with your Mum. It all sounds very familiar with my own Mum, infections just seemed to make her worse just that little bit every time. Sorry to say it.
And yes, even if she is on/approaching end of life, it's a case of how long is a piece of string really - it can vary so much. But do speak with the GP of the home .
Wishing you strength at this difficult time.
And yes, even if she is on/approaching end of life, it's a case of how long is a piece of string really - it can vary so much. But do speak with the GP of the home .
Wishing you strength at this difficult time.
Hi @Rackjw, your post really hit a note with me as I am in a very similar position with my mum at the moment.
She has had multiple infections and her decline over the last 3 months has been very rapid. The small amount of mobility she had has gone. She is sleeping all the time, not talking, refusing to eat most days and recently refusing to drink some days too. It's breaking my heart to see her like this and I am struggling to accept how fast this is all happening. We are seeing her GP this week as the home have asked us to think about DnR and completing. 'respect' form and we wanted to discuss with him before making any decisions.
Thinking of you.
She has had multiple infections and her decline over the last 3 months has been very rapid. The small amount of mobility she had has gone. She is sleeping all the time, not talking, refusing to eat most days and recently refusing to drink some days too. It's breaking my heart to see her like this and I am struggling to accept how fast this is all happening. We are seeing her GP this week as the home have asked us to think about DnR and completing. 'respect' form and we wanted to discuss with him before making any decisions.
Thinking of you.
This resonated with me so much. Mum has just been put on EOL. She had a fall ten weeks ago and now this is where we are. I'm reeling from how fast everything is going. I'm so angry, so bewildered. Fed-up. I had four years where changes were at a pace I could more or less cope with. Now it's so fast my head is spinning.
Hi @Rackjw
I'm so sorry to hear about your mum and how unwell she's been recently. Your story also resonated with me - my mum had a very similar experience recently, she also was sent to hospital with 'overwhelming' sepsis from a UTI, we were told she may not survive but she did and then she came down with Covid while in hospital. It took her a while to recover from that but since the UTI she has also been holding food in her mouth, not eating much etc just like your mum and previously eating was the one thing she did well (or well enough). She's also been a lot less alert (and she wasn't all that alert previously really). I wonder if its the combined effect of the infection + sepsis and then Covid to fight off on top.
My mum's been in a nursing home for just over a week now and I felt she'd been deteriorating but a nurse I spoke to yesterday said she'd not been in work for a couple of days and said she felt my mum was better than she had been when she last saw her. It's so hard to tell when it's like this and people can't express how they are feeling.
It feels like a sudden change, which is how almost all changes have happened in dementia (in our journey anyway). One day it's one thing, the next that is gone. I have felt the same as you - you think 'is this it? Are we nearing the end?' It's a terrible limbo sort of place to be. I hope your mum improves.
I'm so sorry to hear about your mum and how unwell she's been recently. Your story also resonated with me - my mum had a very similar experience recently, she also was sent to hospital with 'overwhelming' sepsis from a UTI, we were told she may not survive but she did and then she came down with Covid while in hospital. It took her a while to recover from that but since the UTI she has also been holding food in her mouth, not eating much etc just like your mum and previously eating was the one thing she did well (or well enough). She's also been a lot less alert (and she wasn't all that alert previously really). I wonder if its the combined effect of the infection + sepsis and then Covid to fight off on top.
My mum's been in a nursing home for just over a week now and I felt she'd been deteriorating but a nurse I spoke to yesterday said she'd not been in work for a couple of days and said she felt my mum was better than she had been when she last saw her. It's so hard to tell when it's like this and people can't express how they are feeling.
It feels like a sudden change, which is how almost all changes have happened in dementia (in our journey anyway). One day it's one thing, the next that is gone. I have felt the same as you - you think 'is this it? Are we nearing the end?' It's a terrible limbo sort of place to be. I hope your mum improves.
Thanks for all your replies. Just spoke to the NH and she seems to have picked up a little.. having more fluids and drinking the food supplement drinks but still not eating much more than a little bit of fruit but seems to be a bit awake today so might just be still recovering from the last few months! I’ve never been a fan of rollercoasters and this one is no different but onwards we roll! Hopefully get some smiles from her soon! I am missing those the most! X
I just wanted to thank everyone for their posts as this is exactly the same with my mum who went from a CH to hospital to NH to hospital with sepsis and COVID then back to NH last year.
It is an emotional rollercoaster and knowing you are not alone is a comfort for me. Last week the doctor was called out as the NH thought mum was approaching EOL but when they arrived she had perked up.
Mum is totally bed bound, has contractures in her legs and fingers, skin is really thin and constantly breaks, can’t communicate, can’t feed herself sleeps a lot and when awake just stares.
I visit regularly and play her favourite music, show her pictures from the past and read books.
She would be mortified to know what os happening to her.
I just wanted to say to you all thank you for your posts they really help me understand and cope
It is an emotional rollercoaster and knowing you are not alone is a comfort for me. Last week the doctor was called out as the NH thought mum was approaching EOL but when they arrived she had perked up.
Mum is totally bed bound, has contractures in her legs and fingers, skin is really thin and constantly breaks, can’t communicate, can’t feed herself sleeps a lot and when awake just stares.
I visit regularly and play her favourite music, show her pictures from the past and read books.
She would be mortified to know what os happening to her.
I just wanted to say to you all thank you for your posts they really help me understand and cope
I agree. Visited again today and my mum seems unable to stay sitting up in her wheel/armchair (hard to describe it’s not a standard wheelchair more of an armchair on wheels) however she can’t seem to stay up and almost ends up lying down in the chair. I have asked the NH if this is new and seems to be this week so I think we may potentially be heading to her being bed bound if this continues?
Not much in the way of talking again today but didn’t fall asleep.
Tried again with water and tea whilst I was there but she either wouldn’t take it or would only have one sip.
However NH have said she’s doing well with fluids so not sure just never why when I’m there!
