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

[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 by age in the UK - Dementia Statistics Hub

Two in 100 people aged 65 to 69 have dementia and this rises to one in five aged 85 to 89. For more information, visit the ARUK Dementia Statistics Hub.

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.

 

[Brother47]

It's definitely cruel to prolong the situation in my opinion. It's also difficult to get a realistic opinion of situation from the staff. I think it's true that we are given a positive upbeat synopsis from the staff but personally I would like a reality update. We were told mum was sitting in a chair in a lounge with all the other residents on Sunday as it was mother's day, however, mum is bed bound and can't even lift her head up so we can't believe they managed to get her into a wheelchair using a hoist and then moved onto a chair in the lounge, it's totally unrealistic. Hey ho, hopefully this nightmare will end soon ...

HI Sheelagh7... I feel for you and yes, me too, I hope the nightmare will soon be over for my brother and for your mum. It's so horrible to see. My thoughts are with you.

 

[Brother47]

My father in law is 92 and in a specialist hospital dementia unit - he's been there over five months after being diagnosed with Alzheimers and has deteriorated rapidly during that time. Like you we get very mixed messages from the staff alternating between he's fine and settled to he's violent and aggressive. I don't necessarily think they are holding back but it depends on who you speak to and how busy they are- that's what I find anyway. I always tie myself in knots over thinking have I asked the right questions so now as thoughts pop into my head I write them down to ask the staff next time I'm speaking to them on the phone. With covid restrictions we aren't allowed to visit except once a week so I understand your frustrations. Alzheimers is such a horrible disease and the person can have moments when they are OK but they are few and far between as the disease progresses. My own opinion is that it is the feeling of being powerless and that you 'should or could do more' are overwhelming at times but I have learned that's OK. You can't do any more that you have been and unfortunately we all have to come to a level of acceptance that it's out of our control and certainly not what we wish for our loved ones. Your brother is still there albeit locked in his own world, it's very sad for you but try to focus on the good memories you shared in the past. Take care of yourself and try to live your life well in memory of you brother - I am sure that would be what he would wish for you. I send my kindest regards for being on this emotional roller coaster which seems unending - it's not in anyone's control unfortunately and it's totally natural to feel the way you do. Big hugs to you!

Thank you so much for your kind words Unicorn 1, yes I feel totally out of control now but look back and know that my brother got his wish insofar as being able to stay independent as long as he did. He was so stubborn and should have gone into a care home a good 6 months before he did. During his last months at home he was falling down sometimes during the night and the carers would find him asleep on the bathroom floor. He put up one heck of a fight not to go into care but by the time I was able to persuade him, he was starting to 'fade' in terms of not quite knowing where he was or what day it was and not recognising everyday items such as kettle etc. I felt awful because I lived some 2.5 hours drive away so when I was able to get him into care home, it was a huge relief for me to know he had proper full time care. I was surprised to see him decline so fast. Yes, he is totally locked away in some strange world. He looks so 'down' and vague. It is a nasty roller coaster. Thank you for what you've said and for the big hugs.