Don’t really know what to do any more

Tell us a bit about yourself here.
bowlingbun wrote:
Sat Apr 27, 2019 7:19 pm
I don't have a crystal ball I'm afraid, and I don't have any magic fixes.
What did you expect?
Don’t know really, my GP suggested it.
[Hquote="Alice in Wonderland" post_id=403928 time=1556209774]
Hello I’m on here as you seem to be a last resort.

I’ve been caring for mum for over 6 years, she has ever increasing medical issues.
Stage 4 COPD on oxygen 24/7 but keeps taking it off when she gets confused.

Moderate vascular dementia, which was triggered during August bank holiday 2017. I rang for an ambulance 3 times that weekend. By the time they agreed there was a medical problem which needed treating, her oxygen sats dropped to just 63%. She was in hospital for 7 weeks and was not the same when she came out. I’m convinced the lack of oxygen to her brain was the cause of the dementia. No one would listen to me when I said she was ill as she didn’t look ill. But I know her and knew something was seriously wrong. I since found out that the oxygen saturation for a healthy person is 97-98% ang below 90% you are at risk of becoming unconscious. The only reason mum is still alive is that her body has adapted to the lower oxygen levels, but it still damages the brain.

Right sided heart failure due to numerous missed opportunities to diagnose the COPD, she was in stage 3 by the time she was diagnosed in 2016.

Chronic kidney disease, have to watch her kidney function and potassium levels.
Type 2 diabetes
Odemia due to the heart failure and kidney problems.

Everything effects everything else. The metformin she takes for the diabetes affects her kidney function, so that’s had to be reduced which means her blood sugar levels are higher than they should be which can cause confusion.

The hypoxia due to the COPD and CO2 retention causes hallucinations and confusion.
Then there is the dementia side, which actually isn’t too bad if medically she is stable. But she seldom is. Typically when she is more confused she gets sun downing and repeatedly asks to go home in the evening or thinks people on the TV are talking to her.

She is also prone to UTIs, we have just managed to get her on prophaltyc antibiitics for this. But the antibiotics seem to be affecting her kidney function.

The poor kidney function and raised potassium levels put extra strain on her heart etc etc I could go on.

Gradually I have reduced from working full time to 4 days, then 3 days. My days not at work, are full of community matron visits, respitory nurse, chiropodist, GP surgery, picking up and dripping off repeat perscriptions, catching up with laundry due to Incontinance issues, servicing of her oxygen machine and a million other things.

Not to mention checking on her during the night. We have carers who come in three times a day, breakfast, lunch and mid afternoon. Average night time sleep for me is around 5-6 hours.

Every month to two months we have an emergency hospital admission, on occasions there is no need to stay, but mostly she ends up in for 3-4 days at a time. Sometimes a week, mostly it’s due to breathing issues and chest infections COPD exacerbations. People tell me I should be glad of the respite, but it’s no picnic travelling back and forward to hospital and having DNR and end of life discussions at every admission. Nor is it restful to sit in A & E for several hours.

She has her good days too inbetween the bad, it depends how medically stable she is.

Anyway that’s where we are at. Due to all of this I have been struggling with low mood and depression. Twice the doctor has signed me off sick for a few weeks due to stress, depression, exhaustion. I’m so tired, no motivation at all, it’s also affecting my work due to lack of concentration,

The last time I asked for further help, my GP gave me a card so I could self refer to our local mental health services. I ended up on an on-line 6 week CBT course. It was interesting but not suited to care needs at all. It was all about past issues and changing current thinking with the expectation that you were in a position to change, ie get a good nights sleep, plan days out, go on holiday, take up hobbies. It wasn’t at all for the needs of carers and didn’t take into account their caring role. It was more for people who might have general anxiety OCD etc.

So I asked the mental health services about Counselling. They agreed it was a possibility but there is a 3 month waiting list minimum. Also there is no flexibility at all. I explained that a times I end up up A & E all night due to medical, emergencies or if mum is ill when I get up in the morning, which happens a lot, I have to wait in for the doctor to call (well actually it’s a paramedic now and you can be waiting in all day for a home visit). Basically because I said there might be times I need to cancel due to these unavoidable and unpredictable emergencies but I would attend as much as it was in my power to attend, they said I was not suitable for counselling as I could not commit to every session for as long as it took.

The only other recommendation was Carers UK. The mental health services suggested I try you guys!
So much for the good old NHS passing the buck.

So anyway hi everyone, I’m not exactly sure what I will get out of this. Reading the forums, many of you seem to be in the same predicament as me. If I’m honest reading some of the posts made me even more depressed. It seems there really is very little beneficial help out there.
[/quote]
Hi there i also care for my mum to she is only 64 yrs old she is bed bound all time 24/7 she has had a stroke few years ago to so she is paralysed down left side sge has kidney failure her kidneys are not worjing any more i see my mum get worse day by day we got told few weeks ago when we were in hospital she only had 6 months to live so yes i am terrified we have careers in 4 x day and nurse in morning she on palative care she gets her good days and her bad days i also suffer from fibromyalgia syndrome i am also diabetic to some days j get very sore myzelf but i need to carry on and look after my mum thank you for taking the time to read my repy Xx
Trisha_1909 wrote:
Mon Sep 09, 2019 2:17 pm
[Hquote="Alice in Wonderland" post_id=403928 time=1556209774]
Hello I’m on here as you seem to be a last resort.

I’ve been caring for mum for over 6 years, she has ever increasing medical issues.
Stage 4 COPD on oxygen 24/7 but keeps taking it off when she gets confused.

Moderate vascular dementia, which was triggered during August bank holiday 2017. I rang for an ambulance 3 times that weekend. By the time they agreed there was a medical problem which needed treating, her oxygen sats dropped to just 63%. She was in hospital for 7 weeks and was not the same when she came out. I’m convinced the lack of oxygen to her brain was the cause of the dementia. No one would listen to me when I said she was ill as she didn’t look ill. But I know her and knew something was seriously wrong. I since found out that the oxygen saturation for a healthy person is 97-98% ang below 90% you are at risk of becoming unconscious. The only reason mum is still alive is that her body has adapted to the lower oxygen levels, but it still damages the brain.

Right sided heart failure due to numerous missed opportunities to diagnose the COPD, she was in stage 3 by the time she was diagnosed in 2016.

Chronic kidney disease, have to watch her kidney function and potassium levels.
Type 2 diabetes
Odemia due to the heart failure and kidney problems.

Everything effects everything else. The metformin she takes for the diabetes affects her kidney function, so that’s had to be reduced which means her blood sugar levels are higher than they should be which can cause confusion.

The hypoxia due to the COPD and CO2 retention causes hallucinations and confusion.
Then there is the dementia side, which actually isn’t too bad if medically she is stable. But she seldom is. Typically when she is more confused she gets sun downing and repeatedly asks to go home in the evening or thinks people on the TV are talking to her.

She is also prone to UTIs, we have just managed to get her on prophaltyc antibiitics for this. But the antibiotics seem to be affecting her kidney function.

The poor kidney function and raised potassium levels put extra strain on her heart etc etc I could go on.

Gradually I have reduced from working full time to 4 days, then 3 days. My days not at work, are full of community matron visits, respitory nurse, chiropodist, GP surgery, picking up and dripping off repeat perscriptions, catching up with laundry due to Incontinance issues, servicing of her oxygen machine and a million other things.

Not to mention checking on her during the night. We have carers who come in three times a day, breakfast, lunch and mid afternoon. Average night time sleep for me is around 5-6 hours.

Every month to two months we have an emergency hospital admission, on occasions there is no need to stay, but mostly she ends up in for 3-4 days at a time. Sometimes a week, mostly it’s due to breathing issues and chest infections COPD exacerbations. People tell me I should be glad of the respite, but it’s no picnic travelling back and forward to hospital and having DNR and end of life discussions at every admission. Nor is it restful to sit in A & E for several hours.

She has her good days too inbetween the bad, it depends how medically stable she is.

Anyway that’s where we are at. Due to all of this I have been struggling with low mood and depression. Twice the doctor has signed me off sick for a few weeks due to stress, depression, exhaustion. I’m so tired, no motivation at all, it’s also affecting my work due to lack of concentration,

The last time I asked for further help, my GP gave me a card so I could self refer to our local mental health services. I ended up on an on-line 6 week CBT course. It was interesting but not suited to care needs at all. It was all about past issues and changing current thinking with the expectation that you were in a position to change, ie get a good nights sleep, plan days out, go on holiday, take up hobbies. It wasn’t at all for the needs of carers and didn’t take into account their caring role. It was more for people who might have general anxiety OCD etc.

So I asked the mental health services about Counselling. They agreed it was a possibility but there is a 3 month waiting list minimum. Also there is no flexibility at all. I explained that a times I end up up A & E all night due to medical, emergencies or if mum is ill when I get up in the morning, which happens a lot, I have to wait in for the doctor to call (well actually it’s a paramedic now and you can be waiting in all day for a home visit). Basically because I said there might be times I need to cancel due to these unavoidable and unpredictable emergencies but I would attend as much as it was in my power to attend, they said I was not suitable for counselling as I could not commit to every session for as long as it took.

The only other recommendation was Carers UK. The mental health services suggested I try you guys!
So much for the good old NHS passing the buck.

So anyway hi everyone, I’m not exactly sure what I will get out of this. Reading the forums, many of you seem to be in the same predicament as me. If I’m honest reading some of the posts made me even more depressed. It seems there really is very little beneficial help out there.
Hi there i also care for my mum to she is only 64 yrs old she is bed bound all time 24/7 she has had a stroke few years ago to so she is paralysed down left side sge has kidney failure her kidneys are not worjing any more i see my mum get worse day by day we got told few weeks ago when we were in hospital she only had 6 months to live so yes i am terrified we have careers in 4 x day and nurse in morning she on palative care she gets her good days and her bad days i also suffer from fibromyalgia syndrome i am also diabetic to some days j get very sore myzelf but i need to carry on and look after my mum thank you for taking the time to read my repy Xx
[/quote]
I hope i have replyed to your post properly im not to sure my first time on here
" 6 months to go" and "palliative care"? Does she now have Continuing Healthcare?
bowlingbun wrote:
Mon Sep 09, 2019 2:25 pm
" 6 months to go" and "palliative care"? Does she now have Continuing Healthcare?
Yes she has the careers in everyday 4 x a day a d the nurse comes in once a day to give her insluin my mum is also a epilepsy she took a really bad seizure few mobths ago she had DNR form to x