Hi Everyone I’m new

[LianneC88]

Hi Everyone,

I’m new to this group and really wish I had found it sooner.
My mum has late stage Alzheimer’s, Dementia and Parkinson’s. She moved into a care home last December after an A&E visit.
In all honesty I have been struggling with this for the last four or five years but in the last month there seems to have been such a steep decline. She has lost huge amounts of weight, is struggling understanding and communicating only saying odd words and her Parkinson’s seems to be causing her real trouble now.
Does anyone else really struggle with this stage? The entire thing has been a heart breaking nightmare but in the last couple of weeks when I visit her I just leave feeling more heart ache than ever.

Would love to know anyone’s advice at this stage. How to cope, how to keep her spirits up, what to expect....any advice would be appreciated

Thanks Lianne x

 

[Palerider]

Hi Everyone,

I’m new to this group and really wish I had found it sooner.
My mum has late stage Alzheimer’s, Dementia and Parkinson’s. She moved into a care home last December after an A&E visit.
In all honesty I have been struggling with this for the last four or five years but in the last month there seems to have been such a steep decline. She has lost huge amounts of weight, is struggling understanding and communicating only saying odd words and her Parkinson’s seems to be causing her real trouble now.
Does anyone else really struggle with this stage? The entire thing has been a heart breaking nightmare but in the last couple of weeks when I visit her I just leave feeling more heart ache than ever.

Would love to know anyone’s advice at this stage. How to cope, how to keep her spirits up, what to expect....any advice would be appreciated

Thanks Lianne x

Hi @LianneC88

Just passing by and wanted to say hello and welcome. I share your experience, it is truly heartbreaking to have to endure this disease but in time for most of us it becomes a part of our life and we accept where we are at, which to be fair is never a fully reconciled, but I think many of us do the best we can in the circumstances. All I can say is just keep going as best you can -its a rollercoaster of emotions for anyone who has a close bond with a person who has dementia - I am one those people who just repeatedly goes round in circles and arrives back at the fact that in the end there is nothing we can do about the dementia, but we can ensure our loved one is cared for appropriately.

 

[northumbrian_k]

Hi @LianneC88 and welcome to Dementia Support Forum. This is a friendly and helpful community and I am sure that our experienced members will be able to give you some ideas on coping with what must be a very difficult and stressful situation. You can ask any questions, join in with discussions, find solace in sharing with people who truly understand and (when you need to) come here to let off steam.

 

[Jaded'n'faded]

How to cope, how to keep her spirits up

It's as much about keeping your spirits up as your mum's.

At this stage there's really very little you can do apart from making sure she gets the care she needs.

My mum was much the same - 3 years in a care home after a fall at home landed her in hospital, and she'd been getting gradually worse for a few years before that. Sadly, although the care home staff were great, mum continued to deteriorate and like you, each time I visited I'd think, 'How long can this go on, how much worse can she get?'

I'd like to offer you some positive words but as you know, there is nothing positive about dementia. That's why you need to look after yourself - don't let dementia take two people down. Could you take a break and spend some time doing something completely different? When you've been dealing with this for years, it's hard to remember that there is life beyond dementia but there is!

And don't be hard on yourself - this isn't your fault.

Good luck!

 

[JoannePat]

Hi Lianne, You will find so much support and care here. I have just come back after a couple of years.......long story, but its not about me today.

Every time you go see your mum you will feel a different emotion. I used to really struggle with guilt.

You must look after yourself and remember that she is in the right place and being cared for. You must look after you and by doing that you will be the best person when you visit her. Even if she doesn't respond tell her about all the good things you have done that morning/afternoon.

We never talked about the news or bad things with my mum. We even watched Strictly on catch up!

I hope your next visit goes well

xxxx

 

[LianneC88]

Hi @LianneC88

Just passing by and wanted to say hello and welcome. I share your experience, it is truly heartbreaking to have to endure this disease but in time for most of us it becomes a part of our life and we accept where we are at, which to be fair is never a fully reconciled, but I think many of us do the best we can in the circumstances. All I can say is just keep going as best you can -its a rollercoaster of emotions for anyone who has a close bond with a person who has dementia - I am one those people who just repeatedly goes round in circles and arrives back at the fact that in the end there is nothing we can do about the dementia, but we can ensure our loved one is cared for appropriately.

Thanks for your message. I also go round in circles. I seem to go through waves where I feel like we must be able to cure dementia, make things better than this etc...only to realise there is very little I can do x

 

[LianneC88]

It's as much about keeping your spirits up as your mum's.

At this stage there's really very little you can do apart from making sure she gets the care she needs.

My mum was much the same - 3 years in a care home after a fall at home landed her in hospital, and she'd been getting gradually worse for a few years before that. Sadly, although the care home staff were great, mum continued to deteriorate and like you, each time I visited I'd think, 'How long can this go on, how much worse can she get?'

I'd like to offer you some positive words but as you know, there is nothing positive about dementia. That's why you need to look after yourself - don't let dementia take two people down. Could you take a break and spend some time doing something completely different? When you've been dealing with this for years, it's hard to remember that there is life beyond dementia but there is!

And don't be hard on yourself - this isn't your fault.

Good luck!

Thank you for this. It’s funny I took a week break last week thinking that maybe that would brighten my spirits but instead I was just riddled with guilt. Did you ever manage to find any balance? x

 

[LianneC88]

Hi Lianne, You will find so much support and care here. I have just come back after a couple of years.......long story, but its not about me today.

Every time you go see your mum you will feel a different emotion. I used to really struggle with guilt.

You must look after yourself and remember that she is in the right place and being cared for. You must look after you and by doing that you will be the best person when you visit her. Even if she doesn't respond tell her about all the good things you have done that morning/afternoon.

We never talked about the news or bad things with my mum. We even watched Strictly on catch up!

I hope your next visit goes well

xxxx

I always have time for a long story if you feel like sharing

I took mums little dog into the care home last night thinking this would cheer her up and also solve my over whelming fear of not knowing what to talk about. Things were going great until I had to leave and tried to take the dog home. The entire thing turned into a nightmare resulting in her crying thinking I was taking her dog and me crying she thought I was kidnapping the dog not knowing I’m her daughter.

Is it wrong I’m slightly jealous she remembers the dog and not me? I feel terrible for even writing that x

 

[SeaSwallow]

Is it wrong I’m slightly jealous she remembers the dog and not me? I feel terrible for even writing that x

It is not wrong at all @LianneC88 it is distressing when we are not recognised and your reaction is perfectly understandable.

 

[Ineedhelp]

Thanks for your message. I also go round in circles. I seem to go through waves where I feel like we must be able to cure dementia, make things better than this etc...only to realise there is very little I can do x

Hi Lianne,
I am Victoria @I need help. I lost my mum in April vascular dementia but caught covid and pneumonia in hospital. I had done my best for four years. She broke her collar bone and had a blocked bowel. I was intially told a week's stay in hospital, but was bed bound for five weeks. Care was a joke. Dad passed ten days after her he had vascular dementia, but was very aggresive had to be put in a care home with melanomia. Lots of stress due to breakdown in relationship with siblings.
Your question on how do you cope. You take the good days with bad, I always took it one day at a time. I know what you are going through. You have joined a great forum with a fantastic bunch of people who all try and help each other.

 

[JoannePat]

I always have time for a long story if you feel like sharing

I took mums little dog into the care home last night thinking this would cheer her up and also solve my over whelming fear of not knowing what to talk about. Things were going great until I had to leave and tried to take the dog home. The entire thing turned into a nightmare resulting in her crying thinking I was taking her dog and me crying she thought I was kidnapping the dog not knowing I’m her daughter.

Is it wrong I’m slightly jealous she remembers the dog and not me? I feel terrible for even writing that x

Oh Lianne, jealousy, guilt, tears, anger, happiness, sadness, you name it you will go through it over and over (sorry!).

We never said goodbye to my mum, we always said we are popping for lunch or a cup of tea and would see her in a bit. It always worked, she never asked to come with us (maybe she didn't want to, ha). Maybe if you take the floofster in again, just say you are popping out for a pee?

My mum was always pleased to see my dad but never me or my husband. It was hard because my dad used to sit watching the TV ignoring her and I would be the one talking to her. She never even said hello to me.

Sending you hugs and thoughts,

x