Watching my lovely mum slowly deteriorate from Alzheimer's is a really breaking me.

[Roselilysnowdrop]

How the heck do you remain strong - year in, year out?

Seven years now of painfully witnessing my mum mentally and physically change from a beautiful lady who loved looking after herself, who never went out without make up on, clothing carefully co-ordinated with her jewellery/accessories to a little old lady who looks 10 years older than her actual 82 years old. Bent over and frail with osteoporosis, bright red eyes from glaucoma and cataracts, excessive hair on her face from the hormone blocking breast cancer medication and the now vacant stare of someone with advancing Alzheimer's. Someone who starts eats crayons like a 2 years old and sits staring at her hands like they are alien to her.

I see her most days and thankfully she often still knows my name but that's about it. She has a team of carers coming in throughout the day because she's now double incontinent following a fall in the summer and a month long hospital stay where the staff allowed her to constantly soil the bed. She went in continent and now has no bladder or bowel control.

You can not hold any conversation with my mum anymore (although I talk to her all the time as I'm convinced she understands me), she tries to talk but the words don't come out and that absolutely breaks my heart. How frustrating to be locked in your own body.

And that's my poor mum's life from now on.....carers wiping her bum, changing her pull ups and her daughters and husband doing everything else. Just sitting in her recliner day in and day out.

I know I'm very lucky to have had my mum in my life for all of my 52 years but if the truth be told I'd have much preferred her to have gone quick from a sudden hear attack like her own mother did at 76.

What kind of life is a life with advanced dementia? Bloody heartbreaking one for all involved, that's what it is.

Utter respect for anyone involved in dementia care and/or caring for loved ones. What a thoroughly wicked disease - it's a robbing bastard.

Respite care helps with not breaking. It's important to look after your mental health to maintain resilience.

Music and touch seem to make it through. We watch a lot of the old MGM musicals. You have to take pleasure in the moment and put what they were to one side for the timebeing.

I think a lot of us would prefer a swift passing from a respiratory infection rather than the slow decline. It sucks.

Not the same as a parent but I found it devastating seeing my wonderful grandmother go this way too. She began to get ill in her early 70s and seeing her go from this beautiful, vibrant woman who dressed stylishly, always had her hair and makeup done, drove, was always busy and socialising, and just generally the glue that held together the family and always making events special, to the same way you describe your mum now. It’s just awful. It was also the knowing how my grandmother would have been horrified to see it too. It’s such a different and cruel kind of loss, and I totally get what you mean about a heart attack or quick event ending a long and healthy life seems so much more preferable.

It's such a cruel disease my mum was totally away with the fairies when she died but she was content and happy which was the best I could have hoped for. She had other health conditions which caused her death but in all honesty I was happy - she has given up had enough of life- it was too tough. hated being so dependent on me me- i was at breaking point and told her we could not carry on- we needed carers and she literally got in her bed and died! was mad when I look back.

My mum did better in a care home too.

I'm so sorry, I understand completely. My lovely mam (75) is in a specialist mental health nursing home for people with dementia and screams most of the day. It tears me apart, we have the mental health team involved but nothing is even getting her back to the point where she can be calm at all or where I could sit and hold her hand. She loved music and musicals but she can't even focus for a moment now. She paces and screams if she isn't sleeping.

If I could end things for her then I would do it in a heartbeat, it's daily torment for her and so, by extension, for us all. All she was - and she was and she did so much - is gone and is replaced by horror for all of us. I wish for peace for us all, those suffering and their loved ones.

I am so sorry OP. 😢🫶🏻
Please vent anytime. She is lucky to have you.

I'm very sorry, op. Have you considered a care home for your Mum? My mum had vascular dementia and the decline was long and painful to watch. The absolute worst part was just before she went into a care home, which was about 2 years before she died. It was at the stage where she forgot how to get out of the bath and it needed 3 people to wash her. The stress on my Dad was unbearable and that was with a live in carer.

Going into a care home was absolutely the best thing for both my mum and dad. Mum was very well cared for (she got much better care than we could provide at home give her level of need) and my dad got his life back to an extent. I hate to say this, but however bad it is now, with dementia its really only going to get worse. It's good to have a look at care homes now so you don't have to make a super quick decision when there is a crisis.

My mum is heading the same way re the screaming and anxiety. I completely understand everything you have said.

To everyone involved with caring for relatives with dementia I would say to have a back up plan in place. Visit a few care homes and see what they offer. I did this while my dad was still alive but becoming unwell himself and mum lived with him. When dad died relatively suddenly it helped that I already knew which care home I wanted her to go to - I was her main carer once he died as well as dealing with my grief over dad and organising a funeral. It wasn’t the time to be trying to visit care homes for the first time on top of everything else. Having already selected a care home I could just call the manager and ask to put her on the waiting list (mum was self funding ).

Wishing everyone strength for whatever their day brings.

I’m so sorry OP. I’m going through the same with my Dad. It’s heartbreaking and a long, slow and torturous grieving process. Watching my Dad lose his words, not being able to play his beloved guitar anymore and now not even able to read. I don’t think he would have ever wished this for himself and would have wanted to go quickly in his sleep if he had a choice. It’s the cruelest bloody disease. Sending you love and strength, I think we just have to take one day at a time.

Mum loves music, always has so I pop YouTube on all the time. She loves anything from the 50's/60's. Sadly though, recently she pays no attention to it but I still put it on as I am certain she can still enjoy it, even if it's just a little.

I am hoping my dad will improve once mum is eventually cared for in a care home setting. He has never been the easiest person to get along with but this disease, even though mum has it, has brought out the absolute worst in his personality which makes the whole situation so much harder to deal with.

The faecal incontinence has most definitely been the most difficult thing to deal with. Before, mum would have the odd pee accident but we were still able to get her to the loo if we had taken her shopping for example or to a cafe for tea and cake which she loved but not knowing when she may poop herself leaves her virtually house bound. It's the worst part of the dementia for me because I know what a proud person my mum was and this is so degrading for her.

Sadly none of my friends have any understanding of dementia and what it's doing to me, they are lucky, their parents are currently all in good health and those that have died have all gone quickly.

I am currently in counselling to try and make sense of it all as it really has hit me hard and I have a very prickly relationship with my father which complicates things deeper.

Good luck with everything , I truly feel for anyone involved with dementia and the care of a sufferer, it is not an easy journey at all. I wish you well.

It is a truly wicked disease and the suffering for both the patient and loved ones goes on for far too long. I really feel for you.

I have felt the exact same way 😞

I really feel for you and Covid times were the worst to be needing care or dying. My MIL died in 2020 and it was awful, the hospice would only allow one of us to visit at a time, the rest had to stay in the car park and we would go in one by one over hours and would get shouted at if we forgot how and where to dispose of the PPE. During her funeral the vicar locked us all in the church so no one else could come in - I hate Boris for many things but especially for these things.

Dying in layers is such a perfect way to describe it - it fels never ending.

I hope for mum's sake the end will not drag out for many years longer but she seems so tough and somewhere in her she has such a will to live.

Poor mum is bent over with osteoporosis, has a pace maker due to heart issues, last year was diagnosed with breast cancer - we thought it was over then but the medication has shrunk the tumour and her consultant is really pleased with everything. June this year she fell in the garden splitting her forehead open, dislocating her knee, breaking her hand and suffering an odontoid neck fracture which, for the majority of elderly osteoporosis sufferers will receive a poor prognosis. The orthopaedic surgeon gave a very grave outlook yet she has completely surprised them with a full recovery. I do fear (for mum more than us) that she will go on for years.

It is heartbreaking seeing her suffer from so many health issues.

I'm so sorry. My mum (92) has been in a nursing home with Alzheimers for almost 3 years. She and I did not have a very good relationship (though it did get a bit better once she was diagnosed) but even so it is very distressing - I can't imagine how much worse it is when you are really close. I don't visit often, she seems to recognise me but cannot really converse. Now she is falling a lot (because she tries to sit down in empty space and the home can't always stop her quickly enough) and I too pray for a quick and painless death to end both our sufferings. I also a have an unhelpful sibling. My saving grace is a friend who went through all this with her mum a few years ago and who completely gets it.

Another friend (who used to be a counsellor) says it's a complicated sort of grief - you're mourning the person that's gone, but they aren't dead yet. And they have been replaced with a new person who looks like the other one but with a total personality transplant.

It's not wrong to feel any of what you're feeling. That goes for everyone on this thread.

I am so sorry, that must be exhausting and absolutely heart-wrenching

We (my sister and I) have tried to get dad onboard but he refuses to even consider a care home setting. He did agree to some respite in November but has backtracked on that as well. My dad is not an easy man to deal with.

We are still pushing for the respite and I am going to arrange for he and I to look around some care homes soon. We all need the break and it is becoming a absolute need for me as I am at breaking point as I have my own health issues and the stress is making it worse.

That's exactly the way your friend has described it.

Neither my mum nor my dad are the same people anymore because of this disease (neither am I tbh) and that is another level of mourning I struggle with because although I visit them almost every day in the house that I grew up in, the house my kids played in nothing is recognisable anymore - mum and dad look the same, the house looks the same yet nothing is the same anymore- it is like living in some weird twilight zone film set. It really messes with your head.

Similar experience with my mum. When she still had capacity she out a DNR on her medical records. She managed to stay at home until 4 months before her death, when it became too dangerous for her to be at home. She passed away peacefully in a care home x

I’m sorry you’re going through this OP. MIL had Alzheimer’s but we were fortunate that she was generally happy. She was starting to have difficulty swallowing, then fell, and the hospital diagnosed leukaemia. She died 2 months later. In a way the cancer was a blessing that spared her the final stages of the dementia, but advocating for pain relief for someone with Alzheimer’s is a whole new game. There’s no easy way out OP and I don’t know how we do it but we do. One day at a time, and try to find time for yourself.