No treatment

Hi wisper 

It’s so difficult hearing that even if you did want to know . It’s still an emotional blow . 
Hopefully it will remain slow growing and not cause him too many issues . 
I would imagine they would want to make sure he is comfortable going to the toilet so maybe keep a wee eye on him .

Always someone here to chat with . 
It’s not easy watching on so please reach out when needed .

Take care ,

Court 

Thank you Court I will .

Hello Court . As I stated in my previous post my husband being too frail for an operation was offered palliative care . All seemed fine at first a MacMillan nurse came made me feel comfortable and reassured on many issues. She sorted out medication for a few problems manelynpain control . Also she was informative about his dementia  and helped supply with him calming meds . All fine I has happy to be able to talk to such an understanding nurse .

Unfortunately she was replaced by another nurse who I am sure was equally qualified but had a totally  different attitude however she came called once to take notes and go over what we already had discussed with nurse one . Then to my dismay we were informed she would not visit again unless it was an  emergency. 
one morning my husband collapsed on to the bedroom floor and although his eyes were open at first  he wasn’t with me .somehow I manage to get him onto the bed but he remained  unresponsive. For around half an hour .His breathing became shallow so that I could hardly feel his chest rise I thought he was die. I called the help hub the nurse on duty told me to dial 999 and said she’d inform the team of my call . We spend 12 hours at the hospital haveing  various tests which distressed all of us . The consultant wanted him to stay overnight but he became so agitated I asked the doctor to allow him home which he eventually  did. Since then my husband has deteriorated swiftely lost around one and a half stones in weight at the moment he weights 8st 5oz.  Each day he has pain and needs morphine also a new pain in his right side just under his ribs troubles him from time to time . All his dementia symptoms  point to late stage  . During this time no contact has been forthcoming from our MacMillan nurse not even a how are you phone call . I know this all sounds like moaning and I do feel let down .this palative care appears to be no care 

Tried to write a post to you but it comes up to replying myself. If it’s visible to you please let me know your thoughts 

It is visible. Firstly I am so sorry for you both . That’s a horrible experience and from my heart I do not class that as moaning . I would class that as a failure to support the patient and family .

You do need some support around you and I think you need to have a chat with your GP to see what service you can access . The GP can refer to Marie curie 

https://www.mariecurie.org.uk/professionals/refer-patients

Or a district nurse can do it. . They can offer overnight help a few times a week and even if not needed yet it is good to get them involved .

My mum also had a prescription from the GP called “ just incase “ meds . If things progress they are used at the end of life but you need to have it all set up before hand then if you see a deterioration you can phone the district nurses who come in to assess .

Have you got carers involved to help you ? If not you can phone social services as this can be helpful .

As far as palliative care team goes . They visited mum in hospital , spoke to my cousin but not to us . So no idea what they were about . Discharged her at this juncture . The community team phoned the day after she died . So I honestly can say I was not too impressed . Mum Was deaf with her hearing aids out ! So she had no idea what they said either and I am thankful for that . 

However her Gp arranged everything and between the carers and the fabulous district nurses she was well supported .

My mum had carers well before she died so I am not for a moment saying this is your husbands situation but getting support in for you and him is important .

My mum also wore a community alert button . The local authority can help . If she fell she pressed it and a team came round to get her up . Only happened the once . It saves you lifting and they can do a quick assessment too. 
It does sound as though you are struggling along with this all on your shoulders .

Our helpline would be happy to chat !

Take care ,

Court 

Court thank you so much for this information and a treble thank you for your supportive words . Nurse number one did leave us with an emergency bag only to be used by a nurse . Hope it’s never opened . I don’t know what’s in it but it’s safe in the bathroom . I will get in touch with GP and find out more about Marie curie . Sounds like a good idea . We don’t have social services involved as yet but I must admit heaving my husband into bed or out of a chair is hard work. I am 4ft 11 and about 7 st give or take a lb or two although he has lost weight he still a ldead weight I’m getting on a bit at 84 . I have found a great deal of comfort in your responses even thought you’ve had a sad time yourself your a balm to a weary soul thank you 

You have done incredibly well coping with this but you are only one person .

I found it helpful to be specific in asking . “ we need carers “ “ we need an alert “ “ we need a referral to MC “ . That way it’s very clear what you are asking for and not passed over .

You sound like a lovely person who has gone much further than most would be able to . Your love is strong but a little help is good too . We dreaded it and I can honestly say they were wonderful . When mum died her three main carers took annual leave days to come to the funeral .What more can I say .

They go into another person in her street and keep a close eye on her house as do her neighbours . We are very fortunate to have good people around .

Dont delay . A job for Monday morning and I can assure you it will ease some of this .

Take care , you are very special .

Court 

Hello Court things have change this week my GP refused to confirm my husband because he said it was now clear he had late stage dementia. I couldn’t believe that he hasn’t seen a surgery dr for months. Anyway I decided to dig my heels in and sent email numerous letters describing in detail  how he is directly to individual doctors in the partnership. Yesterday one phoned me we spoke for around half an hour . He has agreed to confirm diagnosis of late stage dementia and made a referral to admiral nurse to look after him .All this is such a relief but why does everything have to be so hard ? 

Well done wisper . It’s not right now is it easy to do . But you have advocated well for your husband and I do hope some help follows soon .

You have done so well but I totally agree you should not have to get to breaking point to get the system to support you .

Let us know how you get on .

Take care ,

Court