Advanced Dementia in a parent

Dear Foxglove. I do feel for you. My Mum was diagnosed with Vascular Dementia in 2012 and passed away in 2017. The progress was slow to start with and getting the diagnosis was shocking and I knew we were on a time line to the inevitable. Social Care advised keeping Mum in her own home with Carers coming in 3 times a day. They were so poor at times. In hindsight she should have gone into residential care then but we took the advice. Long declining story short. My mum had a fall was left on the floor by the Carer and I could not believe what I walked into that day. Mum was then taken to Hospital. She was then sent to a care home for 6 weeks whilst Social Care were going to look for a suitable home. My Mum was happy at this home and her stay was extended. The home was then devastated by a chest infection brought in by Hospital patients and the home lost 5 residents in one night, including my Mum. Looking back there are so many things I would have changed.
Take comfort that your mum is being looked after. She is now in her own world and if she says nasty things to you or does not recognise you she will not remember. The problem for 'us' is that it is hurtful to watch this decline. I do wish you well.
It is a heart breaking situation and not fair.

For those whose loved ones ask to go home, can I suggest you say something like, “As soon as you are better,” or something similar. It is so much kinder to give hope than the truth. My Mum has really settled since I started to do that.

Mum went a bit like this. However, with encouragement she stayed calm (and actually in some ways nicer than her younger self). Mercifully taken by a stroke in her sleep - so I'd say do not assume your futures are bound to be quite so bad. One day at a time.

Oh dear, the D word was mentioned most recently by the ambulance man, who said he would flag it up to the GP, but I see the symptoms all the time and my partner's GP will only test his memory and say it's "clear". Well, it's not all about memory, is it? It's the confusion, the rages, the accusations, the neediness, the hallucinations, UTIs and incontinence. How do I get the early intervention he needs? He's almost totally blind, which doesn't help, and I am exhausted.

Anneeba

I totally empathise. It's so cruel. Music is a wonderful help. If you can make a playlist of her favourite pieces I can guarantee it will have a calming effect. A couple of months after my mum died Bridge Over Troubled Water came on the car radio as part of a play. I nearly crashed the car as it made me burst into tears. I must have played that, along with Beethoven's fifth, a thousand times to her. We also made a video of all the photos and WhatsApps of the family, her various dogs etc which the home played for her. She loved seeing the babies and dogs even if she didn't always know whose they were. Ice-cream too, always a joy to her.

We found music very useful. Mum was Irish and loved all Irish music so we played that a lot. Even in her last week I played it to her very gently from my Ipad close to her ear and she would smile. As she passed away during the pandemic we could not get a Priest to come in but I found live church services from the town she lived next to as a child and played those to her too. She heard the priests tinkling the bells and saying prayers and she nodded at the right places even though her eyes were tightly shut.

In her last year I started writing down her memories and typed up loads and put in a file. Memories of her siblings, the village school, her parents, pets they had, favourite meals, teachers, neighbours, holidays, walking miles to fetch buttermilk, etc.

When she became bedridden and anxious or upset the staff would sit and read them to her and she would relax and smile and sometimes laugh at a childhood escapade. The staff told me that file was worth its weight in gold because it always calmed her down.

I totally empathise. It's so cruel. Music is a wonderful help. If you can make a playlist of her favourite pieces I can guarantee it will have a calming effect. A couple of months after my mum died Bridge Over Troubled Water came on the car radio as part of a play. I nearly crashed the car as it made me burst into tears. I must have played that, along with Beethoven's fifth, a thousand times to her. We also made a video of all the photos and WhatsApps of the family, her various dogs etc which the home played for her. She loved seeing the babies and dogs even if she didn't always know whose they were. Ice-cream too, always a joy to her.

Hi Foxglove 77 (and everyone. )
I really feel for you and you are in my thoughts. In the last 8 years we have had 2 dad's and my mum with one or other type of dementia. We managed to look after my FIL at home for 9 mths before he died , my mum and dad for 2 years before they sadly needed to go into care. I knew they were being looked after but there was terrible guilt. I know now that it wasnt our fault . You have done your very best for her. I found that I became a daughter again instead of a carer and that helped . Mum especially hated it because she felt like ( as it had) our roles were reversed. We became friends again after she went into the care home . It was very sad seeing them all retreat from us but we made the most of their good times. Take care of yourself xx

Oh and absolutely no filter as to what she said.. the things that came out .. she was such a reserved polite woman .. oh my .. quite funny in retrospect and also a reminder that this is what dementia had done to her .. it really wasn’t the mother I knew .

It is a sad journey. The early signs when my mother was living independently became frustrating and stressful for her and us ..so many confused actions that in hindsight were dementia.. severe hygiene and health issues .once I felt she was no longer safe I had to get her to carehome although I had promised her years before never to do that because she had worked in one . I swear the loss of independence and being institutionalised exacerbated her dementia. The cruellest blow was the pandemic and by then she was unable to understand or vocalise her feelings as to what was going on. Where were we we all?! Plus when someone has heating problems , imagine a carer in mask and protective clothing . We completely lost connection. She had no clue who I was and we were so close . I will not go through the sad demise ..it was heart breaking a she literally became a shell of her former self.I would say make sure the care home is caring adequately . Make sure her personal needs are met .the loss of independence and dignity was hard for my mother and the care can be patronising . Hold her hand ,talk to her as if she s still the person she was.sometimes there’s nothing to say when you get nothing back . Nobody comes back from dementia to tell the tale. Nobody really k it’s what it feels like.. all the senses are confused ..Effectively you will lose her before she passes on . Don’t feel,guilty ..dont give up ..Just remember you are a loving daughter or you wouldn’t have written this post. Some of my family backed away because they couldn’t deal with the situation . . Love wins over everything .. that was one of her sayings and I stand by it .all the best x

my mother had vascular dementia, she came to live with us when she couldn't look after herself,over time as she got worse, she went into a care home, she would tell folk that I was her mother.she liked to sing and dance and she seemed to look forward to sing songs which the care home had often,she was there for 5 years when she died,it was heartbreaking, but also a relief when she died .Now my DH has alzheimers, not bad at the moment, but we know it wont get better, as they say what he's like today, is the best that he'll be , a very very cruel disease
enjoy the time you have with your mum xx

Sending you my very Best Wishes. There is nothing you can do but be there for her - but not every day as it will wear you down. Go to see her and talk to her as if she is the mother that was once there. She may still be there somewhere.
My mother was a body in a bed for 4 years and it was a relief when she passed quietly.
I feel for you. Look after yourself.

Sorry to hear about yours and your mums situation. I’ve no experience other than my friend is a carer for people in there homes, she noticed the sudden decline once they go into a home it’s happened with all her patients and she said it’s sad why this happens.

Huge hugs. A horrible disease and there are no answers. I had to move my mother into a home near me. The positive side was that she was no longer frightened. Although she was determined to stay in her own home I had not realised she was frightened.

The home was wonderful. She had a very short term memory but thankfully had kept her sense of humour. Once I had accepted that I would never be able to get her to engage with whatever, it was much easier and we both relaxed. I took her out for lunch and shopping (not the supermarket!) about three times a week.

I am so grateful that for the last three years of her life I had her near me, and we had a lot of fun and laughter.

Just be kind to yourself, don't fight any battles and enjoy having her there.

Ditto to the Alz. Soc. Talking point forum. I was on it for years - both FiL and Dm had dementia. Whatever you’re going through, others will have been there and know exactly what it’s like. It was a lifeline for me.

It might sound all wrong, but it was something of a relief for me when my mother stopped recognising me - it happened quite suddenly. But until then visits had often been very stressful, with endless demands to go home (she couldn’t even remember the home she’d left anyway) and earlier, angry accusations that siblings and I had only put her there because we were after her money.
TBH visits were often so stressful that sometimes I chickened out - just couldn’t face it.

But once she no longer knew me, I was just a ‘nice lady’ who made her cups of tea and brought her chocolate.
Silver linings….

Crossed posts, crazygrandma!

As others have said, it is a cruel, cruel disease, but now you must take care of yourself. Of course you want to visit her, but you must enter into ‘her world’, and just go with the flow. It is just more upsetting for family if they keep trying to get the person to remember things and failing, or try to tell them that people they may say they have seen have been dead for years.
The Bodach used to get up and dressed at night to go looking for people, and I just had to say it was too dark, and we’d go in the morning. This worked, but sometimes only for an hour or so. You can be glad Mum is safe and being looked after.

Have a look at www.playlistforlife.org.uk , who have had amazing results with dementia sufferers.

Foxglove77 I can only sympathise and send a big hug. Lots of good advice already given. You get through it one step at a time.
One thing I was told, which helped, was to enter her world rather than constantly correct her. By that I mean her conversations showed me that she thought she was living in a place where I know she was very happy. When she asked about local people, I just made stuff up and we continued having conversations, even if they were quite bizarre. It seemed to make her happy, whereas before correcting her made her anxious.
Once it's all over, given time, you will remember your mom how she was and not how she became. Lastly, be kind to yourself.

Dementia is one of the most frightening things to watch take away the person affected. My DM suffered for 16+ years. We kept her at home a lot longer than some of the others that were in the Home she ended up in. My DD visited her every day after he had his breakfast at home & the Home gave him lunch & dinner as he wanted to spend as much time with DM. DM forgot our names but knew we were ‘hers’! She never forgot my DD, greeting him by struggling to get out of her chair saying ‘there he is there’s my Henry’! When we lost her DD was only months later joining her as he had not had enough time, he said, with the Love Of His Life! Dementia is one of the worst things to see take away someone that you love!

Foxglove dementia is frightening for those who have it. Like I said they don't know who they are ,where they are or who anyone is. I liken it to being in a white room but you don't know which way is out as it's all the same you can shout for help but you are still trapped in the room . My mom was trapped in her mind . That's why my mom turned violent it was out of fear . And being frightened can make a 6st woman very strong I bear the scars to this day what dementia made my mom do before I could wrap the duvet round so she won't hurt herself. Unfortunately all the people I know their loved ones turned violent but it's fear . My mom's last 4 months where hell on earth. My mom only ever said bloody . But the language she came out with I didn't know she knew some of the words. She would fall asleep and never knew when she woke I would be attacked or she would talk to me about her childhood .

I am honest about what dementia does like others here. Before the violence started she accused me of stealing her money,trying to poison her with her tablets. I spoke to the GP and she said not to give them to her only the antibiotics. Should say dementia patients are prone to UTIs and kidney infections. Mom couldn't tell me if it hurts to wee but I knew because she was more confused and used to hide the antibiotics in a spoonful of jam . Which she loved.

So please make sure your loved ones urine is tested if they get more confused or their urine smells more or had blood in it. Mom had so many I used to just phoned the surgery and they had the antibiotics without needing a test . I always made sure she was hydrated but the last month she would only eat porridge but I made it with double cream with plenty of dark brown sugar in it. It's the only food she didn't spit out. But it was a way to get calories into her and she always eat a full bowlful 3 times a day. I remember her licking her lips when I feed her the last spoon full and saying yummy.

I choose to look after my mom on my own . As I knew I could do it. But it's very hard and cost me healthwise but didn't realise that until after she died.

You have to do what is right for your loved one and you and the rest of the family and if you need them to go into a home do it. As you are doing the best thing for them . If I had my time over again I would still look after my mom as I am the same person.

But I will not let my daughter look after me if I have a dementia diagnosis I will go into a home. And I have already told her this and told her she wasn't to visit me . But she said she would.
My children don't know what it was really like looking after my mom as I want the to remember the nan they always knew not what she became.

Marmin

My own experience with my mother was very similar to others' posts. One practical help I found was the support forum run by the Alzheimer's Society. It was invaluable.

I absolutely agree with that. I really don't know how I would have coped without that forum.

We had similar experiences with both my mum and dad, a slow deterioration then a crisis, which meant they both had to go into Nursing Homes - different ones, due to their different needs and their relationship always being difficult. Mum was sectioned for 7 months as well which was pretty awful to witness. I can only sympathise with you, send you a huge hug and say to make sure to look after yourself in all this.

My own experience with my mother was very similar to others' posts. One practical help I found was the support forum run by the Alzheimer's Society. It was invaluable.

Thank you all for your support and kindness, I really appreciate it.

Mum doesn't look at photos now. We have put some photos up of her in happier times to make her room look homely. The carers can't believe they are of Mum as she looked so different and happy.

She has good and bad days. Sometimes she says she's frightened and cries and asked what happened to her.

Last night she walked with us holding our hands and we both got a hug when we left.

We take comfort that she is safe and well cared for. The staff are very good with her.

I had my mom live me with the last 18 months of her life she had cancer and dementia. I was her sole carer . I have written about this on other threads .

But my advice to you remember your mom when she was your mom . Dementia kills the person long before their body dies. Your mom doesn't know who she is ,where or who people are especially family. My mom thought I was her mom. The past is their present. Photos won't mean anything and can upset them as they don't remember who people are. It was awful the day she asked me who the man was and it was a photo of their wedding day. Broke my heart. But if you can talk to her about when she was young it will be a way to talk . Does your mom like flowers and music ? They where what made my mom happy.

This is going to say harsh but you won't get any comfort until your mom dies. I have written about what my mom did . Mom would have hated what she became. I grieved for my mom while she was alive.

When mom first started to forget she said please don't let my go do alley tap ( mad) I explained about her brain cells dieing and I couldn't stop it but I would always look after her.

Remember you mom when she was still your mom not what the dementia does it's a living death.

My mom was 90 when she died. But I remember her as she was and all the funny things she did. Her cooking and singing all the songs her dad taught her .

I know you want people to say she still remembers you but she won't. But you always remember her so cherish that.

Foxglove, my heart goes out to you and I am sending you all my best wishes and a virtual hug. Many of us have gone through a similar journey and it is heart-rending whenever I hear that someone is experiencing this.

My Dad was diagnosed with Alzheimers a few years before my dear Mum died. It was mild at first and progressed fairly slowly, but when Mum died we had to make the decision to move him nearer to my siblings and me as he had got to the stage of letting strangers into the house, forgetting his way home when he went out and not eating properly. His neighbours were wonderful in supporting him but we felt it was not fair on them to expect them to do so and not practical in the longer term.

We managed to keep him near us in his own smaller place for a few years with daily visits from one or other of us to take him out and about, clean, do his shopping and washing and carers calling once a day to make him lunch and have a chat. Unfortunately, he had a serious "episode" which was linked to an infection and deteriorated rapidly from there with police and us being called by neighbours. We had no choice but to have him relocated to a care home nearby for his own safety.

After three months, he took a very bad turn for the worse and over the course of a couple of days was bedbound, not eating and sadly died. We were all with him when that happened and, strangely, although he was in the last stages of dementia by then he still recognised us all and knew we were there.

I can only repeat what others have said. Try to take some comfort from the fact that you have done your best for her, your mother is safe and is being looked after. Small things will help, just being there, chatting (even if you don't think she can take it in it may give her a feeling of comfort and security), old photos and memories to give you a point of contact with her and some comfort to you both, maybe?

You are in my thoughts.

Been there, done that - with my own mother and MiL. It is the most cruel disease and you effectively lose the person twice over. My situation came to a head after my mother was brought home by the police very late one night after being found wandering around our village main street. She had no idea how to get home. She was hospitalised after that and then went into care, but it was a very long, slow decline. My heart goes out to you. All you can do is be there for here - and be kind to yourself too.