How I hate labels

[silkiest]

So, recently mum has had a huge decline cognitively and physically. She's been sleeping more and more and crying saying she is so tired. No immediate signs of infection so GP dismissed it as worsening dementia and I did not even get a response last week when I reported she is worse and that the District Nurses had still not taken bloods she had requested 3 weeks prior.
This weekend the paramedics saw her as she was not responding at all. Because the GP had referred to the local hospice (even though she had not yet been seen) I was constantly asked for paperwork and she was dismissed as a social problem/ dementia/palliative.
Thankfully the frailty team did a very thorough assessment rather than assuming anything and realised how recently mum was still able to feed and care for herself (2-3 weeks ago was toilet ting and feeding self - now needing help) and advised investigation - the dr was not even going to do blood tests before that!!!
Mums haemoglobin levels are extremely high and rising. This was dismissed by the GP as dehydration with no urgency to recheck. Mums normal Hb is 12, down to 8-9 if she has a gastric bleed but her latest is 19. I am so not looking forward to being old and dismissed.

 

[SERENA50]

Sending a hug 💕. Your mum isn't dismissed by those who really care about her which is you xx Keep that in your mind , you are your loved ones advocate. I know what you mean though. Dad has a chest infection well I think so judging from his breathing and coughing (he has COPD) told the care home, they rang me late last night , has the doctor seen him? err no we just told the doctor what you said and he has prescribed anti biotics and steroids .. oh okay .. 🤷‍♀️. As a whole society it would be lovely to care for older people a lot more than we do and not make it a struggle so much to obtain social care and support. I hope today is a better day for you.

 

[jennifer1967]

Sending a hug 💕. Your mum isn't dismissed by those who really care about her which is you xx Keep that in your mind , you are your loved ones advocate. I know what you mean though. Dad has a chest infection well I think so judging from his breathing and coughing (he has COPD) told the care home, they rang me late last night , has the doctor seen him? err no we just told the doctor what you said and he has prescribed anti biotics and steroids .. oh okay .. 🤷‍♀️. As a whole society it would be lovely to care for older people a lot more than we do and not make it a struggle so much to obtain social care and support. I hope today is a better day for you.

my husband has COPD and they have a rescue pack that is anti-bios and steroids that he has at home just in case. its standard practice and does help them get better. my husband has not long had the same and it solved his coughing and breathing problems.

 

[SERENA50]

my husband has COPD and they have a rescue pack that is anti-bios and steroids that he has at home just in case. its standard practice and does help them get better. my husband has not long had the same and it solved his coughing and breathing problems.

Hello

Yes we did have a rescue pack ourselves when we looked after Dad at home. It is something I can mention to the home but I suspect they have to ask the doctor's on everything to be fair. It is a new home, new doctors and new staff so a lot to get used too 💕

 

[jennifer1967]

Hello

Yes we did have a rescue pack ourselves when we looked after Dad at home. It is something I can mention to the home but I suspect they have to ask the doctor's on everything to be fair. It is a new home, new doctors and new staff so a lot to get used too 💕

probably need a mars sheet to give it as well as instructions of dose and frequency. they have to have the doctors permission.

 

[SERENA50]

probably need a mars sheet to give it as well as instructions of dose and frequency. they have to have the doctors permission.

 

[SERENA50]

Thanks I will ask them when I go over

 

[silkiest]

Thankyou @SERENA50, it looks like a long wait now. Mum has to have speciality bloods for a type of rare blood cancer which can take quite a while as they are not done at our local hospital.

 

[silkiest]

So another thought on labels. When mums massive cognitive decline was classed as a part of her dementia our only advice from various professionals was to fund more frequent carers or 24 hour care in a home.
Now she is classed as "ill" with active investigations and a possible blood cancer diagnosis she is being cared for for free in an elderly ward. I am amazed by the dedication of the staff and the staff ratio. There are 2 dementia sufferers on the ward who are "wanderers", one who is aggressive and tends to need a staff member with her most of the time, but the staff still manage to find time to feed and offer drinks to mum and actively offer help to me