Some input for someone who just got into this

[JohnGroban]

i would leave her sharing. the other lady may talk too much but probably thinks the same of your grandma you dont know. be guided by the staff as they see her all the time and am sure would tell you if issues are arising from the pairing. probably stimulates your grandma as well

Yeah, according to the nurse, the other one thinks the same.
It is funny because now we buy two of everything to share with her roommate, while the family of her does the same.

But I somewhat understand grandma, to be honest. She lived alone since 2002 since I finished school and went to high school and live with my parents + all of the neighbours and her friend dying before 2000

 

[canary]

You will get used to the "odd" stories about what is happening there and what people are getting up to and you have to take most of them with a pinch of salt. I remember mum told me that the lift plunged to the floor and that the queen came to tea, that a gentlman who had very severe dementia and just sat in his chair all day fancied her and had chased her round the tables; that one of the carers had just had a baby and that mum had just come home from holiday in Italy. I remember one of the members here saying that her mum told her that one of the residents at her mums care home exploded in the corridor. None of these stories were true, but they were all told with great sincerety and mum was absolutely convinced that they were true.

 

[JohnGroban]

You will get used to the "odd" stories about what is happening there and what people are getting up to and you have to take most of them with a pinch of salt. I remember mum told me that the lift plunged to the floor and that the queen came to tea, that a gentlman who had very severe dementia and just sat in his chair all day fancied her and had chased her round the tables; that one of the carers had just had a baby and that mum had just come home from holiday in Italy. I remember one of the members here saying that her mum told her that one of the residents at her mums care home exploded in the corridor. None of these stories were true, but they were all told with great sincerety and mum was absolutely convinced that they were true.

What amazes me of all of this is how good she looks physically. Even mentally. There are signs, but we are now what, 4 months in since it happened and she is overall well.
And I am blown away by the power she has to fight this.

It's bittersweet.
But the status-quo is killing me.

 

[Jaded'n'faded]

You will get used to the "odd" stories about what is happening there and what people are getting up to and you have to take most of them with a pinch of salt. I remember mum told me that the lift plunged to the floor and that the queen came to tea, that a gentlman who had very severe dementia and just sat in his chair all day fancied her and had chased her round the tables; that one of the carers had just had a baby and that mum had just come home from holiday in Italy. I remember one of the members here saying that her mum told her that one of the residents at her mums care home exploded in the corridor. None of these stories were true, but they were all told with great sincerety and mum was absolutely convinced that they were true.

Yep - that was my mum! A lot of very strange events apparently took place at mum's care home (or cruise ship or flats or boarding house, wherever she thought she was that day.) Sometimes there were big fights where the police were called, film crews making a documentary, and frequent weddings. I put the latter down to the fact mum read a lot of romances. She also said, 'Didn't you see all the flowers?' Erm.... yes, I did see a large arrangement in the foyer. It had been delivered after the death of a resident but I wasn't going to tell mum that! I never did discover the origin of the exploding man.

The tall stories certainly kept me on my toes - I never knew what to expect. But I do understand your concerns. It was when mum said things like 'I haven't had any food for days, not even a cup of tea,' that I'd worry she was being overlooked sometimes as she mostly stayed in her room. It's always hard to discount the plausible complaints but that doesn't make them any more true than the visits from royalty, etc!

Some bad things did happen while she was there (e.g. the theft of her jewellery) but these weren't the things mum told me about. She complained loudly about some of the girls (carers) who 'kicked and pinched her' (no evidence of that whatsoever!) but she'd also say things like, 'I can't stand the girls here - they're all stupid and can't read. But the girls here are really nice - they can't do enough for you, always bringing me biscuits!' All in one sentence, totally contradictory.

Large pinch of salt needed!

 

[canary]

What amazes me of all of this is how good she looks physically. Even mentally. There are signs, but we are now what, 4 months in since it happened and she is overall well.

Yes, mum thrived too. Before she moved into her care home I truly thought that she would only last 6 months, but regular food and medication, constant company and social stimulation improved her no end and she lived for a further 3 years.

@Jaded'n'faded - I couldnt remember who told that story but it made me laugh out loud with the sheer improbability - and I could just imagine the look of conspiratal concern on her face while she told you!

 

[JohnGroban]

Yes, mum thrived too. Before she moved into her care home I truly thought that she would only last 6 months, but regular food and medication, constant company and social stimulation improved her no end and she lived for a further 3 years.

@Jaded'n'faded - I couldnt remember who told that story but it made me laugh out loud with the sheer improbability - and I could just imagine the look of conspiratal concern on her face while she told you!

But it is weird. There is a battle inside: I want her to be happy and great vs. I want her to finally go and end this because of how it happened.

I feel a bit guilty since they decided that our visits must be once every two weeks instead of weekly. Somewhat helps, and helps her also because she doesn't have the "I want home" thing on her mind.
Weird feeling

 

[lemonbalm]

Conflicting feelings are all part of loving someone with dementia @JohnGroban . My mum was very ill with Covid recently and when the care home manager told me he had referred her to the end of life team I was in bits because she's my mum and I love her, but at the same time there was a part of me that thought it wouldn't be a bad thing. She wasn't suffering and I thought if she could just have a pain free exit..... She seems to be making a bit of a come back at present and I'm not quite sure how to feel about that either! People say it's a roller-coaster but I think we need a new word - something much bigger, much bumpier and no fun at all!

 

[canary]

People say it's a roller-coaster but I think we need a new word - something much bigger, much bumpier and no fun at all!

I agree with that - especially on the no fun at all bit.
If you think of a new word perhaps we can adopt it

 

[Woo2]

A HELLter Skelter ride ? It’s rubbish but the best my brain could come up with at short notice .

 

[jennifer1967]

bmx track

 

[JohnGroban]

Don't know, but the last few months the only description that comes to mind is Rocky Balboa. Getting a hell of a "beating", but keep on going, no matter what because of the love.

 

[JohnGroban]

Does it get better when there are bad days and you get bad news?

Spoke with the head nurse today with our daily small chat to check on grandma and she said that since last night she is upset.
At first, she got upset because her roommate ate something different from her and told the staff she isn't a pig to be served like this (it was as usual, she always loved the food there so this came out of nowhere).
And today she accused the head nurse of stealing a dress from grandma. (an imaginary dress).

We spoke with the nurse and she told us she wants to speak with the doctor to re-valuate grandma next week, to change the pills.

 

[canary]

When you are dealing with dementia its very much a roller coaster - there will be good days and there will be bad days. Just because there are good days doesnt mean that there wont be any bad days, and just because they are having a couple of bad days doesnt mean they wont get any more good days.
Its constantly up and down.

When you suddenly get a bad day like this, though, it sometimes indicates an infection of some sort - quite often a UTI, so Im glad the doctor is going to check her over.

 

[JohnGroban]

When you are dealing with dementia its very much a roller coaster - there will be good days and there will be bad days. Just because there are good days doesnt mean that there wont be any bad days, and just because they are having a couple of bad days doesnt mean they wont get any more good days.
Its constantly up and down.

When you suddenly get a bad day like this, though, it sometimes indicates an infection of some sort - quite often a UTI, so Im glad the doctor is going to check her over.

I am worried a bit she might have a problem with the head nurse as their relationship was excellent so far.
But on the other hand, she was certain mum was not mum and wanted to hurt her, so might be just a phrase.

 

[canary]

I am worried a bit she might have a problem with the head nurse as their relationship was excellent so far.

If it was excellent before it will be fine again. She is just having a bad day/ possibly got an infection.
Stop thinking every time that there is a problem that this is how its going to be from now onwards

 

[lemonbalm]

Hi @JohnGroban

I expect @canary is right. That does sound as though it might be an infection or possibly just a bad day - or perhaps your grandma just needs a tweak in her medication. I hope your next visit is a good one. It never ceases to amaze me how different visits can be from one day to the next.

Visiting someone with dementia is not easy and you haven't yet grown your outer shell to help deal with the ups and downs on the dementia-super-mega-roller-coaster-with-many-bumps-and-not-much-fun (we can't call it that - much too long).

 

[JohnGroban]

Today was better after they gave her a pill, but I am worried about her relationship with the staff. Until now she was super happy with them, but I have no idea how dementia can change that. I am afraid she might become hostile towards them because of the disease.
I think this actually is my biggest fear, to be honest.

On the other hand, did you guys experienced dizziness with your loved one? We were instructed to buy a specific type of vitamines that will help her with this. She actually complained about having those for a decade now but looks like since this started it intensified.

 

[lemonbalm]

Hello @JohnGroban

I wouldn't worry too much about the relationship with the staff. It sounds a really good place and the staff will be well used to these things. My mum has often been hostile, occasionally violent and the staff still love her to bits. Many carers say they are particularly fond of the more feisty residents!

 

[JohnGroban]

Visit her today and she looked ok, okish.

I mean, we had a good time together, we laughed, but she looked agitated more than usual. It seems like she is getting upset with the staff and her roommate. Let's see what the doctor will say after he will see her this week.

Can a patient be aware of sundowning? She told us today that around 3-4 p.m., she becomes really dizzy and has an unpleasant mood. This is the first time she told us this and I am thinking it might be the sundowning effect?

Also, there is something I noticed more and more, she repeats herself a lot, yeah, but she doesn't forget a name or who is who, who is dead or alive, etc. Can dementia work without Alzheimer's? Sorry if this question is stupid, but she didn't forget anyone since it happened and it doesn't look like she will.

 

[lemonbalm]

Hello @JohnGroban

Glad that your visit went ok. Laughing is always good! Perhaps a tweak in medication will settle your grandma (I assume she has been checked for urine infections).

Alzheimer's disease is just one cause of dementia. There are several different types of dementia, caused by different things, all with various symptoms and even then those symptoms can vary from person to person.

I'm not sure about the being aware of sun-downing. It is interesting that your grandma mentions the timing of her dizziness and mood change. My mum has sometimes said that she feels dizzy or funny but has no sense of time. I think that many people with dementia know that something is wrong somewhere.

You might be interested in this link which explains about the different types of dementia:

Types of dementia

Dementia is a group of symptoms. It’s caused by different diseases that damage the brain. These diseases affect the brain in different ways, resulting in different types of dementia.

www.alzheimers.org.uk