Slipping away with little quality of life - different feedback from care home

[canary]

Her body is a skeleton she gets fed she chockes every few days they suction the food out . She can't control her own saliva. She has skin tears where her skin is like paper. Her head is permantly in one position. She has parkinsons as well. 2 years of bed care her body is as exhausted as her brain

Im sorry to hear all of this. I probably didnt express myself very well, but although there is undeniable effects on the body, the place that it all starts in is the brain - the brain regulates all movements and functions, so as the brain cells die mobility is lost along with everything else (like swallowing), Even Parkinsons is regulated by the brain, due to neurones in the brain that produce dopamine dying. Cancer is terrible and I am not minimising it, but IMO it rarely causes the ravages that dementia does.

 

[canary]

I will have a break from here as I think I’m upsetting people

I think its probably me - Im not expressing what I mean properly
xx

 

[GillP]

I’m a cancer nurse I see how it ravages the body but cancer patients get excellent palliative care , my mum is in living hell and has no dignity no qol she will be fed to she chokes and aspirates again it’s torture and hell and inhumane , I will continue to pray she goes to see my dad her brothers and sisters mum and dad etc etc , I will have a break from here as I think I’m upsetting people , my mum is a living dying skeleton she is in hell I wish her and everyone else peace

I hope that you will continue to use the forum if it helps you. I believe it is a place where we can be honest and share our feelings. We all need support and an outlet during the difficult times we face. I agree with so much that you have written.

I too get frustrated by some of the images used to promote dementia charities and services, although I am sure that they do reflect the very early stages. Similarly I feel frustrated when I see the different ways that dementia and cancer are treated and funded.

I wish you well. Do look after yourself x

 

[Sheelagh7]

@15moterbike @canary please stay on the forum, I agree with everything you both say. It is a living hell that we all wish will end soon. I find it really helps to read other people's posts, it makes me realise I'm not the only one going through this horror.

I've just received a call from mum's nursing home to say this afternoon's visit is cancelled due to another covid outbreak. I'm sad that it will be at least another week before I get to see her again, but in many respects it is also a relief not to visit. I usually visit with my brother and we tend to get a feeling of doom whenever we enter the home, not that it's a bad nursing home, just the reality of the seemingly never ending situation we are in and the fact mum is having to sell her little bungalow to pay for the privilege of this living hell.

I'm meeting up for coffee with a friend shortly, her mum is about 2 years behind mine. We tend to have a good moan about the system and the trials and tribulations. Also, I've been able to give her some advice on how the system works, which helps me as well as her. Hey ho, onwards and upwards as they say!

 

[karenbow]

My mother's last 3 years were horrendous and she wasn't considered 'end of life' even when she was!

In that time she was constantly anxious, unhappy, agitated, sometimes aggressive, subject to hallucinations, incontinent and completely bewildered. She wasn't on any meds at all.

I watched her go through this until she acquired a 'slight infection' which was never identified and she died a week later. It has left me severely traumatised. At no time in those last 3 years did she have any quality of life, in fact she was living out her previously expressed worst nightmare.

Did anyone benefit from her being alive for those last 3 years? No. Unless you count the care home share holders - it cost mum £150,000 to pay for the privilege of that dementia life sentence.

dear jaded really sorry you and your mum went through such a terrible time- i can fully understand that you feel traumatised- my mum died in october and watching mum deteriorate just as you did with your mum shocked me - although id read up on alzheimers the actual passage of the disease was far worse than i imagined - i always thought that death would be peaceful if nursing care was available i was so wrong and this comes into my thoughts every day and i cannot seem to accept that this is how mums life ended- i feel really bitter about it , and i am probably trying to blame something, anything, rather than face up to the fact that our lives dont always end gently- best wishes jaded,i hope that eventually you,ll start to feel a bit better x

 

[Jaded'n'faded]

Thank you @karenbow

I'm not sure if I feel bitter or angry or what really
I'd read everything I could find on dementia but couldn't relate it to a real person somehow. What I wasn't prepared for was the fact that before she finally faded to that shadow-like state, dementia caused my mother to go stark staring mad. I used to visit her in the care home where she'd be kicking off, hallucinating, shouting or full of delusions and the carers, bless 'em, just took it in their stride. Whereas I'd be thinking, 'This woman is completely crazy - why doesn't someone DO something?!'

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.

 

[Alora]

Hi Jaded

You were so helpful to me with my struggles with my mum I wish I could help you more, say the right things to you. it must have been awful to see this person you knew and loved turn into this other creature.

Hopefully, with time, you will just remember your Mum as she used to be.

The carers were probably just as upset as you were but had to be professional.

I’m so sorry.

 

[Scarlet Lady]

[

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.
[/QUOTE

This really hit home for me, @Jaded'n'faded . I haven’t experienced anything like that with my PWD, but it does bring home the realisation that some dementia behaviour is indeed ‘madness’ and wouldn’t be out of place in a Dickens novel. Thank goodness we don’t treat this as we would have done then, but it surely is as difficult to cope with as it ever was. We may have more compassionate places to ‘put’ them, so to speak, but we aren’t much further forward in treating the very disturbed in our dementia community.

 

[Jaded'n'faded]

It is the human condition I suppose. Some of us die in accidents, some of us get heart failure, some of us die of cancer. And some of us go insane and lose our minds. But nobody ever says that!

 

[karenbow]

I feel I have to answer to this . Mum was sectioned about 5 years ago went to a mental institution for a while , we would visit she would be screaming the place down shouting at us she hated us for putting her in their , she then went to residential care where she wandered around constantly hallucinating seeing men with swords coming for her , I was apparently sat by her the whole time , she couldn’t have male staff look after her she accused them all of wanting to marry her , she saw my dad and babies everywhere , people selling drugs and letting dogs lose . Very occasionally there was a moment of joy of dancing and singing . She had to go to a nursing home then as Parkinson’s deteriated this soon snow balled into falls doubly incontience and bed rest for at least 2 years . Until about 9 months ago she would kick and bite staff during any personal care but no longer has the strengh . She can still shout and shake and need lorazepam to settle ,her face is screwed uo I believe she is pain , sores on hands from contractions from where the staff put mitts on they rubbed. She is about 6 stone I finely won my argument to stop weighing her a while ago as it was cruel on a scale hoisted up in air, I agree no one trains you for this madness there are memories from the real mental times they don’t fade , no it’s just living hell or living death .

it is so terrible and youve put into words how it really is and this must be so difficult to deal with- my mum was only a little aggressive during the middle stages but really it was nothing compared to what you,ve described , mum had hallucinations and thought we didn,t believe her etc and it was just very sad and unbelievable how this disease attacked her body and mind- all the dementia adverts , care home brochures etc show happy smiling faces and yes im sure this is the case in many situations ,but i dont feel it is the true image of dementia- i would have appreciated someone telling me what was likely to happen- i couldn,t help mum other than be there but yeah it is shocking and all of us on here are coping , or think we are but not sure- it has certainly made me look at life differently x

 

[lollyc]

Thank you @karenbow

I'm not sure if I feel bitter or angry or what really
I'd read everything I could find on dementia but couldn't relate it to a real person somehow. What I wasn't prepared for was the fact that before she finally faded to that shadow-like state, dementia caused my mother to go stark staring mad. I used to visit her in the care home where she'd be kicking off, hallucinating, shouting or full of delusions and the carers, bless 'em, just took it in their stride. Whereas I'd be thinking, 'This woman is completely crazy - why doesn't someone DO something?!'

There was also the feeling that I was supposed to behave like it wasn't happening too and I found that really difficult. Maybe I'm just a bit of a wuss but there were times I was scared to go in the care home - always several really dodgy people on the loose, one of them being my mother. Sometimes when I arrived she'd see me and her face would change. She would bare her teeth and make a beeline for me. If she spotted me and had that feral look I felt like turning round and running for it. Sorry, but no one has trained me to deal with madness.

I feel bitter and angry.
I can't reconcile myself to that fact that, in 21st century, it is considered acceptable to allow people to suffer like this. There is no treatment for dementia, no cure. There will be no sudden last minute recovery, just an undignified, miserable end. We have the ability to end it peacefully, but to even suggest such a thing is greeted by many with horror (often from those who have no idea what this is like).

We were comparatively lucky (if that's a word that can be used anywhere near dementia), in that, at the end Mum deteriorated rapidly over 4 or 5 days and died very suddenly. We were spared the days / weeks / months of gradually eating less, unable to speak etc., etc., that many of you have endured. But dementia took everything from my lovely Mum: her ability to enjoy her hobbies, watch TV, listen to the radio, I could go on, and on, but I don't need to explain to all of you here. She existed for 5years in a world that confused and often frightened her. No-one should have to exist like that.

 

[Alora]

I’m so sorry Lolly 5 years was a long time for your Mum to exist like she did and the toll it must have taken you and your family must have been horrendous.

I’ve still got to face what you’ve all been through as my mum has just gone into to care. It’s been an eye opener reading people’s heart rending stories and it’s helped me to understand what might be coming for Mum.

As Jaded said you can read up on dementia/az but each sufferer is unique and no one can prepare you.

people are living longer now - my mum’s 96 and there‘s going to be more people getting dementia in their 80’s, 90’s and beyond. Hopefully there might be a cure or successful treatment one day soon. Anything to do with mental health tends to get put at the back of the queue I’ve found.

There was a guy standing outside Tesco’s recently he was holding loads of placards about a cure for Alzheimer’s . I offered money as a donation but he said he wasn’t there for money but just to make people aware. He said that 5 members of his immediate family had died from or had dementia.

 

[CAL Y]

I feel bitter and angry.
I can't reconcile myself to that fact that, in 21st century, it is considered acceptable to allow people to suffer like this. There is no treatment for dementia, no cure. There will be no sudden last minute recovery, just an undignified, miserable end. We have the ability to end it peacefully, but to even suggest such a thing is greeted by many with horror (often from those who have no idea what this is like).

We were comparatively lucky (if that's a word that can be used anywhere near dementia), in that, at the end Mum deteriorated rapidly over 4 or 5 days and died very suddenly. We were spared the days / weeks / months of gradually eating less, unable to speak etc., etc., that many of you have endured. But dementia took everything from my lovely Mum: her ability to enjoy her hobbies, watch TV, listen to the radio, I could go on, and on, but I don't need to explain to all of you here. She existed for 5years in a world that confused and often frightened her. No-one should have to exist like that.

I couldn’t agree more. It’s inhumane to make people suffer like this.
Like yourself we were comparatively lucky.
What a terrible thing to admit to being relieved when my beloved husband was diagnosed with cancer.

It was interesting that he seemed to go through almost every stage which is written about on here but in a very short space of time.
At least I didn’t have to worry about ”care”
As soon as cancer was diagnosed the local services stepped in and were brilliant,
As a result ,although I am grieving for him I don’t feel as traumatised as ,any of you do.

 

[Jaded'n'faded]

people are living longer now - my mum’s 96 and there‘s going to be more people getting dementia in their 80’s, 90’s and beyond. Hopefully there might be a cure or successful treatment one day soon. Anything to do with mental health tends to get put at the back of the queue I’ve found.

This is key. The incidence of dementia as we age increases exponentially. Not only that, 2/3 of sufferers are female which is something we really need to be looking at. The rates are SO bad that if you are a woman of 95+ the incidence is close to 50%. (Even those who don't appear to have dementia show amyloid plaques in their brains.)

Advances in medical science mean that we can now repair hips and treatments for cancers, heart failure, etc. are so much better. A lot of us who might have died at 80 in the last century will now make it to 90 or more - wayhay! But at least 1 in 3 of those (it's about 37% across the population) will lose their minds, because we're still rubbish at fixing brains.

Prevalence and incidence - Dementia Statistics Hub

In this section, you will find information about the numbers of people with dementia in the UK and globally

www.dementiastatistics.org

I'm not sure there will ever be a drug-based cure. I think gut biome and stem cell research might offer some possibilities, though I am no scientist. Or maybe humans just have an 'optimum' maximum age and we've already reached/exceeded it.

Or maybe Dr. Voronoff was onto something...

 

[Violet Jane]

In the past, people who developed dementia would have been 'taken' early by other diseases for which there was little or no effective treatment eg Pneumonia, Diabetes, Heart Failure, Cancer. Repeated infections weaken people but these days there are powerful antibiotics and IV drips to re-hydrate people and so people are living longer whereas in the past they would have succumbed much earlier to infections. I'm afraid that there is a price to be paid for greater longevity and better medical treatments.

Many people now reach their late 80s and 90s and many of them have some degree of dementia as well as other serious health problems.

 

[Brother47]

This illness is so cruel, not only to the PWD but also their loved ones. Before covid hit we had a good relationship with some of mum's carers and we did say to them that we wanted to know how she was doing - warts and all and not to be told everything was fine if it wasn't.
I can understand staff perhaps not wanting to be the barer of bad news but I do want to know, perhaps there is someone at the home that you could have a talk to?

Thanks Jane, yes I too agree. I've tried a number of times to talk to the primary carer at the home and she is always optimistic. The best 'blunt' conversation I've had is with the nursing manager but even she seems to change her views. I have penned an email to the director of the care home and asked for an assessment of his condition as it's the end of his first year there. I will put it on here when I get a response.

 

[Brother47]

Hello @Brother47

Having a daily phone call is good practice as far as the care home is concerned and a cause to be grateful.

When the medical staff say he is comfortable it means precisely what it is. Your brother is pain free and comfortable. That is their main concern.

When the care staff say your brother is absolutely fine they mean the same as the medical staff only they are using less medical language. Your brother is pain free and comfortable.

We all know how infection can have a more damaging effect on people with dementia than on those without and I for one would be grateful to hear he is sleeping a lot. There are other far worse reactions to covid , especially breathing difficulties which I wouldn`t wish on anyone.

We also all know how appetitive is the first thing to be affected when we are ill.

It`s a very sad state of affairs and much harder when you are unable to visit and see for yourself but it sounds to me as if your brother is being carefully monitored and very well cared for.

Hi Grannie G, yes, you're right. He's safe and being well cared for and most importantly, not in pain. The home is still closed as they have more cases of Covid in 3 of the residents. So another couple of weeks will pass before they open. I do try calling but often they don't pick up because there are so many like me trying to find out how their relatives are. They offered Zoom calls initially but my brother isn't capable of doing that. He can't talk much and would probably not understand what was going on. All I want to know is how my brother is progressing really. I know he's well cared for but the varying opinions on him are confusing. I have emailed the care home director for an update on my brother as it is the end of his first year there. Thank you for your input.

 

[Brother47]

The CH where my mom is have regularly scheduled “care conferences“ with the care coordinator/SW (who’s totally useless), nursing supervisor, therapists/ dieticians and other staff as applicable. Maybe this is an option? Adding in areas that you feel necessary?

For example, my mom uses the “in house” GP. The upside is that she gets a brief check at least once per week and immediate doctor on call attention as needed, but the downside is that we don’t receive regular medical feedback directly. We’ve asked the doctor to join the next conference (and they’ve accepted) as we feel her condition is changing now (physically and mentally) and we want a direct medical discussion.

I agree that the direct care staff see things at different times and have different perceptions of reality. which colours their discussions with you.

We kind of feel like my mom’s care is a team effort and it’s helpful to have all sections of the team giving feedback in the same room and to be on the same page for her care plan going forward.

BTW, my sister and I are very long distance so these conferences take place on Zoom or conference calls.

Thanks Yankeeabroad, I was living a few hours drive away when he first went into the care home. I've since moved nearer but still over an hours' drive. The care home doesn't have a resident GP. My brother is receiving nursing care. He is now registered with a different GP to the one he was with when he was still living alone. I used to get regular monthly calls from his GP when he was at home but the care home have registered him with a medical practice near them which makes sense. I am sure the care staff at this home are told to give an optimistic response which is understandable given the fact that I can't visit. Good to know your Mom's care is a team effort. My brother has a primary carer but of course she isn't there more than 5 days a week and not always available. My brother is too far advanced with his dementia to handle a Zoom call unfortunately though the home have offered it but also agree he wouldn't understand it. His speech is limited and he falls asleep during conversations. So sad really. Good that you are able to speak to your Mom by Zoom. My thoughts and very best wishes are with you. Thank you for your input.

 

[Brother47]

My mother's last 3 years were horrendous and she wasn't considered 'end of life' even when she was!

In that time she was constantly anxious, unhappy, agitated, sometimes aggressive, subject to hallucinations, incontinent and completely bewildered. She wasn't on any meds at all.

I watched her go through this until she acquired a 'slight infection' which was never identified and she died a week later. It has left me severely traumatised. At no time in those last 3 years did she have any quality of life, in fact she was living out her previously expressed worst nightmare.

Did anyone benefit from her being alive for those last 3 years? No. Unless you count the care home share holders - it cost mum £150,000 to pay for the privilege of that dementia life sentence.

Hi Jaded'n'faded, I'm so sad to hear that. I think my brother is going through the same. He maybe isn't so anxious except for when they are bathing him or touching him in anyway... he shouts and yells because he hates being touched. He has no quality of life and has to have everything done for him. The care home sounded as though they didn't think he'd survive Covid but he did. As far as I know, he wasn't given any medication for it. He sleeps so much more now as well. I would stab a guess that he sleeps for at least 2/3 of the day if not more. He's self funding and able to afford this but only because I sold his house for him last year. He wanted to take his own life before he went into care and tried to do so but took blood pressure meds by mistake which just rendered him dizzy and sleepy. After that the carers who looked after him whilst he was home had to put his medication under lock and key. He asked me many times to help him to end his life which was so sad. Before his condition accelerated so much after he went into the care home, he used to say he hoped he wouldn't wake up the next day. It's sad and not fair and as you described 'a life sentence'. Thank you for your input.

 

[Brother47]

Hi @Brother47 I had. A bit of the same issue with my mother, different nurses gave slightly different assessments of her condition. The truth is most probably that nobody is really sure. The decline of an end-of-life patient isn't something that can be accurately measured on a scale. Your brother may be declining due to his dementia and age rather than because of covid. If quality of life is rock bottom, sleep is a welcome break from misery, so I would be inclined not to worry about sleeping a lot. It seems the staff are doing their best on nutrition and there isn't much more to be done.

Thanks MartinWL, yes, I daresay you're right in saying nobody is really sure. My brother is 75 now and was diagnosed with FTD about 3 years ago. At the time I thought his condition wasn't moving along too fast but in the last year, since I had to get him into care, it has rocketed along. I never thought he'd make it last Christmas but here we are. He's survived a bout of Covid and had a few weeks of just laying in bed and not eating much before that, but somehow he manages to carry on. Sadly I know he didn't want to end up like this as he tried to take his own life shortly after being diagnosed but he swallowed a whole strip of blood pressure tablets thinking they were sleeping tablets so once that was discovered (whilst he was still in his own home) the carers had to lock his meds away. Yes, sleep must be bliss compared being awake and seeing hallucinations, not understanding what's going on. I feel guilty for sometimes wishing he wouldn't wake up. I look at him and he's just 'not there' any more. It is so sad. Thank you.