How do I recognise end of life signs

Brother47

Registered User
Jan 18, 2020
14
My brother has Frontotemporal Dementia. He lives alone and was diagnosed a year ago but lately his symptoms have increased and his ability to do normal daily things has all but gone in the last month or two. He no longer knows how to make a hot drink, doesn't know how to turn the kettle on, can no longer read a paper, and his speech is failing. He sleeps most of the day as well. He stopped eating hot food on Boxing day and has only had a the odd half a sandwich or couple of mouthfuls of soup since. He will eat a few biscuits or small soft cakes. He has daily homecare support and she is doing a wonderful job but some days he tells her he just wants to be left alone to sleep. This week I have noticed that he has become unsteady on his feet and very frail which is no surprise given how little he's eating. He doesn't want to go out now either. He has been losing weight for some time and is now very slight. The doctor has examined him a few times in the last couple of weeks and said this is a progression of the condition and said it sounds as though he is the end stages and suggested the best I can do is to keep him warm and comfortable in his own home. I'm worried about how near he is to passing and really don't like the thought of him being alone when this happens but as I live a couple of hours plus away from him I can't be there very quickly. I feel so useless. I suggested to the doctor that I arrange for him to go into care but the doctor said it's probably best not to move him now as it would be too distressing for him. Any suggestions would be welcome on this.
 

canary

Registered User
Feb 25, 2014
11,300
South coast
Hello @Brother47
End stages is not necessarily the same as End of Life. Some people can go for months (sometimes years - although not often) at end stages before reaching end of life. So, unfortunately it is not always possible to tell how close they are.The changes at end of life usually go on for hours or days so if there is someone who recognises the changes and they can phone you then you should be able to arrive in time. Has the GP prescribed the "just in case" medication (a small box containing the medication needed at end of life)? If so, then this means that they expect the end to be quite soon.
 

Brother47

Registered User
Jan 18, 2020
14
Hello Canary, thank you for your reply. No, the GP hasn't offered any medication at all. Yes, I've read that end stage can last and I didn't know about 'just in case' meds. The doc has asked me to keep him updated which I do weekly.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,462
Yorkshire
hello @Brother47
welcome from me too
sorry to hear about your brother
I'm with you on thinking that a move to a care home would give your brother 24 hour care
I appreciate that a move won't be simple and may cause some upset ... but I worry that your brother is alone most of the day and at night (apologies if I have misunderstood)
 

canary

Registered User
Feb 25, 2014
11,300
South coast
I went back and re-read your first post. I had assumed that the lady carer you had referred to was a live in carer. Is this right? If not, I too would worry about him being left on his own for long periods
 

Splashing About

Registered User
Oct 20, 2019
373
My mother was end of life in October. The whole family visited and said goodbye.

I think with dementia end of life is an impossible thing to accurately predict. It’s a rollercoaster
 

Brother47

Registered User
Jan 18, 2020
14
Hi Shedrech, thanks for your reply. My brother lives alone and has been a 'loner' for the last 28 or so years (it took him three failed marriages and a couple of live in partners to realise he'd rather be on his own). No the carer doesn't live in. He'd hate that. It took me more than 8 months to persuade him that he needed any help at all. He's been having the daily care since last summers and I was very surprised that he accepted it although in the first couple of weeks he refused to let her in on two occasions! I know it sounds odd but he hates company and has always preferred to be alone. Books and going out for long walks were his pleasures after he retired from running his own business (alone!). Nevertheless I do worry that he no longer reads like he used and now can't go out and enjoy walking like he did before all this. I've had long discussions with the social services who attend regularly and his doctor and both agree that to move him now would be very distressing. The private carer is wonderful and he gets on well with her but after two hours he asks her to go as he wants to sleep. The stage he's at now means he gets so very tired just trying to communicate for an hour or more. It's sad and a big worry but I have to accept that for now, this is the way he wants it to be.
 

Brother47

Registered User
Jan 18, 2020
14
My mother was end of life in October. The whole family visited and said goodbye.

I think with dementia end of life is an impossible thing to accurately predict. It’s a rollercoaster
Yes, it's an awful condition and so hard to predict. Some days he seems a bit brighter but those days are quite rare now. So good that you were all able to say good bye. Thank you for your comment, it is reassuring.