How long does this hell go on for?

[UnitaBath]

Mum was diagnosed with Alzheimer's 8 years ago but I had been pushing for a diagnosis at least 2 years previously, so I imagine it's been 10 years +

I have been helping my elderly parents navigate this world of theirs almost every day for the last 6 years. I have become their PA in all sense and purpose, the person who has to keep track of everything in their lives, keeping their plates spinning in the air. A role I took on out of love but had zero notion of what I was getting myself into.

Mum has a pacemaker due to a heart condition, three years ago she was diagnosed with breast cancer, last summer she had a nasty fall in the garden fracturing her neck. In A&E we were told the type of fracture she had would most likely kill her within a month. She survived and after a month long stay in hospital she came home, worse than before and now doubly incontinent. The state she was in upon discharge we genuinely expected her to die at home within weeks but she kept pushing on. This winter she had an infection of 'unknown origin' and after a 36 hour wait in A&E corridors (where my father picked up norovirus) she had another stay in hospital which saw her deteriorate further and upon discharge to home her GP prescribed anticipatory medication as she appeared to be coming to end of life. 7 months on she is still here - bless her.

This summer has been awful for mum, the heat has exhausted her and she spends most of her days just sitting in her recliner chair with her feet up, sleeping on/off all day (she has to have her feet up or her they will turn purple/black). She can not speak, just looks at us with glazed expressions, is double incontinent so has carers in 3 times a day which is costing her £800+ per week. Every now and then she becomes animated and will smile and say a few words but it's very sporadic now.

Honestly, what kind of life is this? I cry every day for my poor mum. I love her so dearly and want her to live forever but obviously not like this, this is no life for her, for my dad or for my sister and I. It is such a wicked disease. Why does my mum's poor diseased body and brain want to keep clinging on to life, it is no life at all.

He is her husband he isn't some random man loitering in a corridor that is why he went, why is this difficult to understand?

It's so draining, I feel for her.

This sounds horrific. But you sound like an amazing daughter, they are so lucky.

And spreading norovirus making the situation worse for everyone.
Whyis it so hard to understand that he shouldn’t have been there since by the OP’s own admission SHE has to advocate for ‘them’ - if he isn’t able to do that he shouldn’t be there.

He wasn't spreading it, obviously it is unfortunate he picked it up, but that doesn't take away they are husband and wife he wanted to be with his wife, which is entirely normal and your odd "system" of how you want patients to be treated without support is just odd.

Just because he is elderly and maybe struggles doesn't mean he has no "rights" he is a person in his own right and absolutely should be with his wife if he wants to.

You obviously have not read my replies well. My dad did not spread the norovirus, he picked it up in A&E as it was rife at that time of year. He wanted to be there with his wife, my mother.

You have admitted further up thread that your elderly mother is well apart from some arthritis. I sincerely hope for you both that she never gets dementia - you have no idea.

Er the OP actually said that he spread it to her sister…. .
Yes the patient should have son advocate with them, but makes it harder for everyone if another helpless person with wyrstionsblr hygiene (as the OP herself said re the lack of handwashing 🤢) is brought along too.

Yes that is how viruses work which i said is unfortunate but there was no health warning to not go to the hospital, the op could have picked it up and passed it to her Dd, because she was also there are you hung up on this do you have health anxiety or something?

Lol /no health anxiety 😂
I don’t wear a mask, unlike the OP..

What the hell is wrong with you, nit picking for what?

Yes, dad did pass it on to my sister but not in the hospital.

Are you being deliberately obtuse or winding me up for fun? In case it's the former I shall explain a bit clearer.

My dad picked up norovirus in the hospital, when mum was eventually placed on a ward on the Sunday night, dad and I then went home. Dad woke in the night and started throwing up, we assumed it was food poisoning or stress. My sister popped in on dad on the Monday as she had been away for the weekend, she genuinely thought he had food poisoning but when she started throwing up 2 says later it was obvious it was not food poisoning. You think me dad was happy picking up a vomiting bug and passing it on to his daughter?

And not washing you hands whilst sitting in the same seat for 36 hours doesn't make for someone lacking in hygiene, dad was tired and stressed and wasn't thinking.

I had started this thread because I was looking for support from people who have been through this hell and who understands.

You obviously have no idea at all.

Good job I did wear a mask wasn't it because I didn't get it. If I had my poor mum would have been on a hospital ward on her own with advanced dementia unable to communicate her needs. As it was they didn't keep her fluids up or feed her so it's a bloody good job I did take extra precautions wearing a mask and using hand gel because my dear mum would have probably died during that hospital stay, she became super dehydrated and ended up with more problems than when she went in.

And I will heed this warning to you now. Keep your fingers crossed that your mother continues to enjoy good health in her latter years. And please take that as a warning seriously because advocating for a confused and elderly loved one in hospital these days is a bloody stressful nightmare. I have had to do this three times during the last 18 months and it is not fun.

I probably won't interact with you anymore being hung up on this is weird and I am probably not helping by reacting to you.

We went through this with my mum. With 5 siblings on a rota we felt we should be caring for her ourselves. In the end it was an Occupational Therapist that pointed out we were actually not doing the best for her. In a care home there are qualified carers there 24/7 who are always on hand to see to someone's needs in a suitable environment. It was the best decision that we made. One of us still visited everyday but it eased the load from our shoulders.

Last night my 80 year old husband suddenly deteriorated. He's been disabled for many years but has deteriorated this year. I called 111 and was offered an ambulance or doctor, I said doctor. They were busy so it was 1am when doctor came. He did a really thorough examination and talked to DH about an ambulance. He accepted it was something DH didn't want. He gave a week's supply of antibiotics, gave advice about follow up with GP and advised that ambulance and hospital might be something DH needs to consider if things don't pick up.

I'm really puzzled hearing about all the people forced to do things when my experience is so different with both my relative who recently died with advanced dementia and my husband.

It's recognising when that point has come isn't it. I remember how I agonised about elderly relative where I had LPA, making those choices for another adult is hard even when you really know it is time.

I've started to look at Dh and wonder, not there yet but it's coming.

I'm sorry, I hope your husband is feeling a little better today.

We have been advised by mum's new GP to always request a doctor if we have to ring 111 in the future. I am not sure if it's a postcode lottery thing or not but we have never once been offered an on-call doctor whenever we called the service, we will do that from now on but no, it's never been something the call handlers have suggested.

So annoying because we could have avoided, probably, 2 out of the 3 hospital stays mum has had since 2024 which were all very detrimental to her dementia.

The last few years of my mums life were awful. No dementia diagnosis but a strong suspicion. There was evidence of mini strokes and a slow growing tumour so that might have been it or cognitive decline, she was late 80s when the wheels started coming off. She also had a chronic heart condition and long term asthma, her breathing was awful but I’m quite sure that she wasn’t taking her inhalers though she said she did. Her hearing was poor, she was frail, very underweight and could hardly walk. However she believed she was really quite ok. I was her only child and have teens so it was all on me. No other family at all. She lived very close. It was a dreadful time, she was stubborn, difficult, at times, abusive. She had a tiny bit of care coming in but they weren’t up to much not helped by my mum not being clear about what she needed. She also had a cleaner (got through several in a few months) and a gardener. I was somehow unable to put any kind of distance between us which might have helped. Finally, after yet another hospital admission, she accepted a care home. She had been talking about it for years before hand but she was pretty miserable there. She still believed that she was perfectly independent when she hadn’t been for years. She was unable to see the impact it was having on me and my children. My husband was a saint through all this. By then I was on my knees, I was with practically all day, I was exhausted, having a horrid menopause and was just slowly disintegrating. She spent the last 17 months of her life in the care home, the care was really good in many regards but she hated it. Despite not holding poa (which I don’t think would have come into play as she apparently had capacity), they did consult me for medical decisions. In the end, she decided not to return to hospital for a blood transfusion, knowing she was fast declining (not sure how much she really understood that) and died within a couple of weeks, still being horrid to me in her last conversation with me. It was her decision and I think she had enough. As broken as I was, I can’t say I blame her. Everything meaningful in her life was gone, unlikely to ever return.

My experience is clearly quite different to many of yours but it was still terrible. She suffered and I suffered with her, she made my life a misery during those years. I cried so much then that I had no tears left when she died. She was always a difficult woman, suffered significant trauma as a child but did her best until advanced old age made life miserable. I believe the care home saved me. Like many of you, I don’t want my children to care for me, though, judging by their current ambitions, it seems pretty unlikely.

I wanted to extend support and sympathy to all of you going through this difficult time. I hope it’s a peaceful as it can be despite it being so very difficult.

I feel for you. This is where I am right now. I am in perimenopause which has been hell, have some health issues, teens at home and a poor long suffering husband. I am lucky that I have a sibling but she leaves a lot of the issues to me to deal with stating she works full time and can't possibly put herself out (although she's often at home early when I drive passed her house but hey ho!).

Mum has always been very easy going but dad is the difficult character, we have a very prickly relationship at times and he makes a difficult and emotional situation much more difficult than it needs being, he upsets a lot of people and can be so nasty, I am always apologising on his behalf!

It just makes a stressful and hard going issue even more so.

My mum slipped away with pneumonia leading to sepsis secondary to the dementia. We didn’t treat the pneumonia because there was no point in her continuing to be alive (that sounds harsh but it was the truth)
personally I have done a living will to refuse all treatment after a dementia diagnosis

Similar situation here inasmuch DM bed/wheelchair bound for the last 5 years. DF is her carer. She's doubly incontinent so 4 x carers a day. His life reduced just as much as hers did following her medical episode but he has taken it on the chin very stoically. However, things are starting to crumble because he's now 83 and she had dementia to add to the long list and she is becoming difficult and making him feel guilty for wanting to see his friends for a beer/meal or she changes her mind if DF has arranged a meal out saying she feels sick but its her way to control the situation and I feel sorry for DF. I said he should speak to SS for respite but he said 'no, she'll make me feel guilty when she comes back so it's not worth it'.

His days just run into each other, just like hers do. I used to run myself ragged in trying to do more for them both to ease the shittiness of the situation but I've caused myself health issues as a result now so have eased back massively.

It's a whole world of horror already and then I find out that they removed the DNR from DM's records and want 'the full works' should there be any medical issues, hospital admission...the works. I feel utter despair at the thought of it all.

I always think that it must sound harsh to those who have no understanding of dementia but this is exactly what we will do for mum should the time come. It's better to let them go naturally than to be kept alive living as a shell of a human being. It is so cruel to keep people alive in advanced stages of diseases they will never be able to recover from.

I too will have a living will.

I really feel for you. What a nightmare situation for all involved in this kind of thing.

I too found it so difficult seeing my parents struggle as they do and thought I was being so helpful doing all I could but I ended up being run ragged too and now my health is suffering as a consequence and I genuinely worry I'll never be able to claim it back.

There are no winners when it comes to dementia and elderly care, it's tragic really.

I can well believe this. My DM’s care home tried to call an ambulance on a Friday at about 11 am. They claimed she was threatening to kill herself. They tried to manipulate me into driving her to A&E myself and wanted me to present her there at front desk by citing suicidal intentions. Unlucky for them I’ve had 10+ years of sitting with my DM on plastic chairs in a&e for 24 hours and it’s no place for someone with dementia. We’d had a full meeting with the gp and care home manager only a few days prior where I made it very clear my DM was not to go to hospital unless categorically unavoidable. I refused to take her myself and they called 999. I was furious. 999 were having none of it (thank god!) and made the care home call the mental health helpline IRS instead, who spoke to my mum for few minutes. My DM told them she had no intention of killing herself she was just fed up because no one ever listens to her. IRS told the care home she was absolutely fine and discharged the case. Bonkers. But yes - there was a definite whiff off them wanting to cart her off to hospital because weekend was approaching and they have minimal staff.

I can tell you this - eventually you do start not giving a sht. Which sounds terrible I know. I don’t mean you don’t care about your parent anymore, you do. But you definitely develop an immunity to the ‘system’. My DM has been in a care home now for one year and it is way less pressure on me. But even when it’s not, and it’s all kicking off, and every agency + the care home manager is calling me, texting me, emailing me, manipulating me. I just give less of a shit. I step back a lot more. Mentally I gave up last year when I felt suicidal myself and was physically very ill from the stress. You do eventually choose yourself.

I hope that time comes soon because the stress has had such a negative impact on both my mental and physical stress and I worry I'll never recover. I am not myself at all, it's changed me so much. I can understand why you felt suicidal and I'm not saying that lightly. There is zero joy in my life.

I'm sorry you have been through this too.