Don’t really know what to do any more

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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 Alice,
A lot of carers join the forum in times of difficulty and yes, a lot of carers are struggling.

The forum can't replace counselling but the good thing about it is, we all understand how difficult caring can be and the forum is non-judgemental, so it's a good place to vent, seek emotional support and practical advice.

My GP recommended I joined a Carer's group, impossible as I'm either at work or caring for S, but then I found the forum. It is flexible as it can be accessed at anytime and members can post, check for replies and have a browse at a time that suits.

Whilst you wait for counselling, what would help ease the pressure you are under? Does your Mum receive care visits? Do you want to carry on supporting her in her home or are you considering she might need a nursing home?

Continuing health care funding, is mentioned often on here, it's a battle but something worth considering.

Melly1

PS this thread of ideas to help Carer's wellbeing was compiled by carers, for carers: https://www.carersuk.org/forum/support- ... mood-12505
Melly1 wrote:
Thu Apr 25, 2019 6:37 pm
Hi Alice,
A lot of carers join the forum in times of difficulty and yes, a lot of carers are struggling.

The forum can't replace counselling but the good thing about it is, we all understand how difficult caring can be and the forum is non-judgemental, so it's a good place to vent, seek emotional support and practical advice.

My GP recommended I joined a Carer's group, impossible as I'm either at work or caring for S, but then I found the forum. It is flexible as it can be accessed at anytime and members can post, check for replies and have a browse at a time that suits.

Whilst you wait for counselling, what would help ease the pressure you are under? Does your Mum receive care visits? Do you want to carry on supporting her in her home or are you considering she might need a nursing home?

Continuing health care funding, is mentioned often on here, it's a battle but something worth considering.

Melly1

PS this thread of ideas to help Carer's wellbeing was compiled by carers, for carers: https://www.carersuk.org/forum/support- ... mood-12505

Thank you for the reply it’s appreciated, unfortunately they haven’t even registered me for Counselling as I couldn’t guarantee I could get to every session.

I’m not even sure that a care home would do for mum it would have to be a medical based place or nursing home with medical staff there on site. There is absolutely no way I would trust a basic care home to deal with her oxygen issues. I’m not even comfortable with the thought of her going in a nursing home.

While she was in hospital one time, they wanted to put her in a care home while the carers package restarted. I agreed at first but then discovered no one at the home had any medical experience of dealing with a patient on oxygen and no one was prepared to take responsibility for checking her oxygen saturation levels - I check them a couple of times a day, especially when the oxygen has been off or if she has a cold. So do the home care carers who come to the house. They call me if there are any problems. So I challenged the hospital and social services about it. They finally admitted it wasn’t suitable so kept her in hospital. I found out later they weren’t even going to provide her with any oxygen at all in this care home as the hospital said she didn’t need it - right like you suddenly are cured of end of life COPD.

We also had issues in 2015 when she fell and broke her shoulder. She ended up in a care in the community bed for 6 weeks while her shoulder healed. They did have medical staff it was sort of a half way place not ill enough for hospital too ill for home etc. That place was abysmal. I wrote a 6 page letter of complaint. They kept giving her diabetic medication on an empty stomach. The cleaners forgot to plug the buzzer back in when they unplugged it to move the bed and clean so she couldn’t buzz for help. She got dehydrated, she fell out of bed twice as no guard rails. She was confused and barely awake the entire time she was there. I begged them to send her to hospital as something wasn’t right. They refused. A few weeks later she got very ill and it was then that the COPD was discovered. Staff there thought she was just a confused old lady, when in fact she was slowly dying.

The problem is lots of care staff assume confusion is due to dementia but in mum’s case it can also be low oxygen levels. If you don’t know the difference it can kill.

I had a friend as well on an end of life gold standard framework palliative care plan. She was in a care home due to a stroke. She was disabled and couldn’t speak but could understand you. At one point she stopped eating and the staff in the home thought it was time for her to die so withdrew fluids and food as part of her end of life care plan. Her husband was frantic with worry he rang me not knowing what to do, they were both elderly. I told him to call the GP as the home had refused to do so. He did this the GP came out and found she had tonsillitis! It was treated and she lived!

Mum wouldn’t stand a chance in the care homes around here as when she becames unwell, most of the symptoms are similar to dementia.

Even in hospital I have to fight for her right to be treated. In February she was admitted with flu, she was ill but was awake, sat up and chatting. At one point a doctor asked me if they should treat her. Absolutely I told them there was no reason not to treat her! 4 days later on a course of antivirals and nebulisers she came home. If I had said no, that would have been that.

They way the NHS and care homes treat the elderly is terrible. It’s like they are weighing up how much resources to use on them. Mum would have died 3 or 4 times over by now if she hadn’t lived with me. Early last year I came home from work to find her a bit shiverer and refusing to eat. That is so out of character I knew something was badly wrong. I called an ambulance they said she will be ok just give her some paracetamol. I insisted they take her to hosp and at hosp she scored 9 out of 10 on the sepsis scale. She ended up in hosp 10 days on IV antibiotics. It was only because I knew her so well that I knew she was ill. Had that happened in a care home she would have been dead by the morning.

She’s only alive because I’ve continued to fight for her. It’s just not right that it’s so hard to make people listen and assist, it’s taken it’s toil on both of us. It shouldn’t be this way.
Hello Alison,
I'm not going to be any help to you apart from giving you a virtual hug. ((())). I am in awe of how much you have fought for your Mum and how alert you are to small changes which tell you something is wrong. I don't know how to fight the battle you face.
I will not tell you to hand your Mum's care over to a Home or similar because from what you have written you are probably right in thinking that no-one else can look out for her as well as you do. Unless of course it comes to the point where it's a choice between the smaller amount of quality of life that Mum has left and yours. I personally don't believe that you should wreck your life to prolong hers beyond her ability to get something out of life. How does Mum feel about enduring all the problems she has for as long as possible?
My Mum, who did not have the many medical problems your Mum has, did go into a Home for about 3 months before she died just 11 days before her 100th birthday. I tried so very hard but my Mum had had enough and told me she didn't want to reach 100. So she didn't. Stubborn woman!
All I can think of is that you investigate any ways to make your task easier. Any aids, machines,alarms, charities, volunteer visitors. reliable carers, gardeners, on-line shopping, Occupational therapist, continence nurse and so on.
If you have explored everything, have asked everyone (and it seems you may have) then it's the hard, hard choice. Do you arrange for Mum to be in a Nursing Home where there is at least someone awake and on duty at night while you sleep, or do you destroy your own health and sacrifice even your job to make sure she lives on?
It's horrible, the choice between oneself and one's loved one as you might well perceive it. As many cares do. What would Mum want? Which path would give you the most peace? Your mum will pass eventually. You know that. You need to come through that time knowing that you have done everything you could but also with your own health, physical and mental, intact or at the very least soon recoverable.
Sorry I haven't been of any practical help, forgive any unintended offence, I too had a much loved and very elderly Mum.
KR
Elaine thanks for your response, sorry to hear about your mum too. It sounds like you really hung on with her to the end.

To be honest I doubt my mum will have much longer, at least at home she has a reasonable quality of life. The moment she goes into hospital she lives in a world of confusion and bewilderment. I just couldn’t bear for her to live out the rest of her days like that if I can possibly help it.

It shouldn’t be a case of making a choice either, looking after an elderly person verses the physical and mental health of the carer. Both should be taken care of to give both a good quality of life with all the financial and practical help needed.

According to various websites, the U.K. is listed somewhere between the 5th and 9th richest country in the world, depending which you read. Yet it can’t support its elderly properly and their family/carers.
I don’t suppose politicians care, they will have their gold plated pensions waiting for them.
Mum can have Continuing Healthcare in her own home.

I would suggest that you Google "Signs of Dying". There are some really useful articles written by people who have worked in hospices. I found the information about eating and drinking really helpful. I know it's horrible to do, but have a look.

I wish someone had told me to do this when my MIL was very ill, it would have helped us so much.
bowlingbun wrote:
Fri Apr 26, 2019 8:43 pm
Mum can have Continuing Healthcare in her own home.

I would suggest that you Google "Signs of Dying". There are some really useful articles written by people who have worked in hospices. I found the information about eating and drinking really helpful. I know it's horrible to do, but have a look.

I wish someone had told me to do this when my MIL was very ill, it would have helped us so much.
Hi thanks for that. She’s not on an end of life pathway plan. It was just me speculating that I doubt she has long now. There is only so much the body can take and the COPD is progressive. But thanks for the information.
I was NOT saying that she was at the "end of life" but it might be helpful to read the information, especially about eating and drinking, because I've never seen it explained so clearly before. I wished so much that I'd understood my dad's prostate cancer better, then I could have supported him better.

It's really helpful to understand that the body knows how much food and drink it can tolerate. It's therefore OK to want little sips, and light easily digestible meals, maybe in tiny amounts, because that's all the body can manage. I was trying to avoid typing too much as one of my fingertips has split and it hurts to type much.
Sometimes carers, with good intentions, want their carees to eat lots, to "get better". But old people don't need large amounts of food, especially when not very active.
bowlingbun wrote:
Sat Apr 27, 2019 4:38 pm
I was NOT saying that she was at the "end of life" but it might be helpful to read the information, especially about eating and drinking, because I've never seen it explained so clearly before. I wished so much that I'd understood my dad's prostate cancer better, then I could have supported him better.

It's really helpful to understand that the body knows how much food and drink it can tolerate. It's therefore OK to want little sips, and light easily digestible meals, maybe in tiny amounts, because that's all the body can manage. I was trying to avoid typing too much as one of my fingertips has split and it hurts to type much.
Sometimes carers, with good intentions, want their carees to eat lots, to "get better". But old people don't need large amounts of food, especially when not very active.

I already know all of that from my experiences and I never asked for advice on eating and drinking so I’m rather confused why you keep pushing information I never asked for.

I had a dear friend who died of overian cancer last year after battling it for 8 years, she ended up in an hospice. Another friend who died last year following stoke related issues I was bridesmaid at her wedding in my teens so another long standing friend - unfortunately her husband now has a vary rare cancer too.

The father of some more friends died last year. My best friends mother in law died, died last year a horrible death, she had dementia but ultimately she died of a grade 3 bed sore caused by hosp negligence, the hospital admitted liability.

All of which have probably added to the low mood and depression.

I also have several medical friends one a physician assistant, another a community matron, we also have a different community matron who visits mum every 3 weeks. I also know 2 midwives, a professor who teaches medicine, several nurses, a consultant in A & E medicine, and a wonderful lady who specialises in paediatrics and thankfully we have a really good repore with our GP.

Sorry I know you are only trying to be helpful, I just didn’t come here to be bombarded with question, and assumptions.

Anyway maybe this place isn’t right for me so I’ve created another thread to ask for my account to be deleted. I just dont have the time or mental energy to keep having to explain myself to complete strangers.
I don't have a crystal ball I'm afraid, and I don't have any magic fixes.
What did you expect?