Alzheimer’s or dementia?

[Jaylee]

Just wanna open a talk to others supporting with this condition with family or maybe a spouse who are also holding together diabetes whilst they uphold dignity of loved nes.

I share time with my sister holding this together with our mum.? Me as a type 1.

Any types are welcome.

 

[VashtiB]

I can sympathise- my mother lives with us and is starting to develop some symptoms of dementia. She has never been concerned about her blood sugar levels. She almost boasts when they are 18 or higher. She has no consequences. I find it challenging as she basically boasts of her high levels.

 

[Jaylee]

I can sympathise- my mother lives with us and is starting to develop some symptoms of dementia. She has never been concerned about her blood sugar levels. She almost boasts when they are 18 or higher. She has no consequences. I find it challenging as she basically boasts of her high levels.

Hi,
I’m sorry to hear that.

Though my mum isn’t diabetic, the self preservational stuff like hygene & med taking can be a challenge.
She thinks the pills will “do me in?” I reassure her it’s my cooking that won’t do her any favours…
She has a carer come in the mornings for the bathing.

Night times she can wake confused & go walk about calling for her parents? Or her dog, which I took care of when she was diagnosed till he died nearly 5 years ago. Bizarly it tends to happen when I wake to treat a low? (On my watch.)

We got a carefully coordinated support network set up. With my mum living with my younger sister then I stay over whilst she’s away or my older sister stays over?

Last week had my older sister on watch Thursday/Friday I had a gig on Friday night & drove down early Saturday morning to pick up the “baton.”

 

[Antje77]

@Jaylee , this sounds like you have it all very well organised, but it sounds very hard as well.
Do you still sing silly songs together? I loved that thing about the guinners in the dinners you did with her a few years back.

 

[Melgar]

Thanks for starting this discussion @Jaylee . I provide respite for the full time carers fir two seniors with dementia. My mom also had dementia in her last few years. My mom had vascular dementia. It is such an emotional journey for loved ones, especially when they no longer know who you are. I found that the most difficult part . My mom had her health challenges throughout her life. She suffered from RA, epilepsy and she was completely deaf in one ear. The way I see dementia, looking after my two seniors, is that they are always in the moment. In the early stages they can become very difficult, resistive and even aggressive. They are still there somewhere inside of themselves. They can have moments where they are cognizant. I think it also depends on their personality.

One of my ladies is a gentle soul, she still has enough about her, even though her dementia has progressed to the stage that she doesn’t recognize anyone , she can still have her own mind, and if she doesn’t want to do something you have to get creative to get her to do things, like taking her medications. She recognizes laughter, she doesn’t understand noises , but sge will also mimic noises around her like car horns and crows.

One of my biggest fears, especially if they are very mobile is losing them. I know that is a thing.

I read to my one lady, it doesn’t matter she understands or not, she still understands around 60% , she’s 103, but the important thing is your attention to them, and touch. I see a difference just chit chatting and holding their hands. I think giving them attention is so important. My other lady who is 98, loves music, 1950’s music, like Doris Day. She sings and when the moment takes her she sings along. We both sing along to the songs together.

 

[Jaylee]

@Jaylee , this sounds like you have it all very well organised, but it sounds very hard as well.
Do you still sing silly songs together? I loved that thing about the guinners is in the dinners you did with her a few years back.

Hi,

Yep. We still sing silly lyrics to tunes played on Alexa.
It brings her out of any “downers” she has. (She can sort of “phase out” & get mentally lost.)
Interestingly, I saw an old interview with John Lydon who’s wife had Alzhimeirs He also said music helped her engage.
I also find myself doing a rhumba round the kitchen whilst cooking which amuses her whilst waiting to eat?

@Melgar , my dad had vascular dementia. (He was T2.)
I took a different approach with him.
If I needed him to help himself? I would ask him as if I needed to “borrow a fiver till payday.” Or needed a lift somewhere?

 

[Melgar]

@Jaylee, I think whatever works. As long as they are safe and looked after. My mom was not diabetic, despite her size(she put on weight and was confined to a wheelchair due to RA). You would have to be creative with her. She always wanted to visit her mom and dad. We just said they were out. The moment would pass. Due to her dementia she would take a swing at you if she got annoyed, so you always had to be alert for her fists. She was not like that at all before her dementia.

 

[Jaylee]

@Jaylee, I think whatever works. As long as they are safe and looked after. My mom was not diabetic, despite her size(she put on weight and was confined to a wheelchair due to RA). You would have to be creative with her. She always wanted to visit her mom and dad. We just said they were out. The moment would pass. Due to her dementia she would take a swing at you if she got annoyed, so you always had to be alert for her fists. She was not like that at all before her dementia.

I agree there is no one size fits all.
My dad was quite a slim bloke like me so he was easy to manoeuvre.

My mum can at certain times look up & mention she needs to go home to her parents.
I tell her that she lives here. Then she will realise she don’t have parents anymore & ask what happened to them.
I tell her they lived a great live & died a ripe old age. (Which they did.)
Bizarley, she doesn’t recognise herself in recent photos yet she knows her kids.
She also knows my wife by name & my sister’s husband.

She does get fretful if I mention I’m heading off home when my sister gets back. So I just mention I’m popping to the loo..
It’s just a 2 hour drive for me to get there..

 

[Lamont D]

Hi all.
I'm already in a very, very long thread that has helped me so much where I can say what my day is like, and have a bit of a rant, chill, and of course get much needed friends and their help, encouragement and honest assessment, a laugh, a word and a lot of common sense. Ooops, I must mention the artwork........or I will be in a bit of trouble.

My wife has been seen by a couple of specialists and another one in a couple of weeks. Last year in January, they done the tests and the consults but couldn't find either Alzheimer's or Dementia. It was to do with the painkillers, grief, lifestyle, anxiety and more importantly severe depression. Her memory of today and recent past is very sporadic. The normal response and concentration needed to take information in and stay there is completely not there. It is what you would call goldfish memory.
It can be very frustrating and very time consuming and requires constant care and attention.
Conversation is stunted and sometimes repetitive.
Because of her disability, and anxiety, getting her out and about takes a lot of effort and organisation. And that is with her permission.
She has all her appointments at home.
I am her full-time carer. But with family help and others, we get through each day.
I have to be there for her..... What else can I do?
I moan and swear professionally, I think I have to. I wasn't trained for all this, I'm learning day by day.
I'm not a housekeeper, my wife did all this, while I worked.
My retirement has turned into a bit of a living nightmare.
I have had the counselling, my life is not what I envisaged.
But it is what it is. Get on with it!

I feel empathy and sympathy for all those who have to endure these awful conditions.
It life really sucks. Sometimes.
To watch your loved ones deteriorate over time.
And you are practically helpless.

My best wishes to you all. You will need it.

 

[Antje77]

Yep. We still sing silly lyrics to tunes played on Alexa.
It brings her out of any “downers” she has. (She can sort of “phase out” & get mentally lost.)
Interestingly, I saw an old interview with John Lydon who’s wife had Alzhimeirs He also said music helped her engage.
I also find myself doing a rhumba round the kitchen whilst cooking which amuses her whilst waiting to eat?

Glad to hear that music still helps!

It's amazing what music can do to all kinds of neurological/brain issues. Not only in the way it gets your mum out of her 'downers' or the way old music is often used to get people with dementia perk up to some good memories too, but different conditions as well.
I had a friend with pretty bad ataxia (involuntary movement and shaking due to a progressive brain condition, couldn't walk either). He was also a musician, drums and bass guitar, and I was standing next to his physio during a gig. Physio was completely surprised by how the ataxia actually seemed to help when it came to making music, allowing an extra beat on the drums or a surprising addition to his bass playing.
Also, people who stutter often find they can sing without stuttering.

 

[Jaylee]

Glad to hear that music still helps!

It's amazing what music can do to all kinds of neurological/brain issues. Not only in the way it gets your mum out of her 'downers' or the way old music is often used to get people with dementia perk up to some good memories too, but different conditions as well.
I had a friend with pretty bad ataxia (involuntary movement and shaking due to a progressive brain condition, couldn't walk either). He was also a musician, drums and bass guitar, and I was standing next to his physio during a gig. Physio was completely surprised by how the ataxia actually seemed to help when it came to making music, allowing an extra beat on the drums or a surprising addition to his bass playing.
Also, people who stutter often find they can sing without stuttering.

My mum back in her day long before I was born was a professional dancer. Chorus line productions.
She also sang.

She sang to me to teach me to talk as a baby.
Though the lyrics I make up these days to the old tunes to light that “spark” still in her are more like surreal stories about a snake with a face like his back end who thought he was a twin…
& a dog called bullock chops. In the style of old “music hall?” Or classic musicals like “Hello Dolly” or “the sound of music?”

Sounds cruel. But somtimes when I’ve exhausted all options bringing my mum something to drink. After running back & forth.
Lemonade? Nope.
Tea? Nope.
Water. No.

I suggest a “kick up the bum?”
She snaps back after laughing & rehydrates..

I’ve just calculated after dealing with my dad for 8 years before he died then not long after with my mum initially thinking it was just grief then a diagnosis? I’ve been collectively supporting my parents for 23 years??
My mum had no “lifestyle markers” & even the NHS couldn’t work out what caused her Alzheimer’s.. she been a vegaterian for decades.(even vegan at one point.)
I didn’t even notice it. The first clue was jumping “ship” for bacon?

She absolutly loves bacon egg & mushrooms as a breakfast.
She asks “is there bacon” when I mention I’m doing you eggs after the carer has washed & dressed her.

I’ve actually been astonished at her brief cognative function with either the news or a gameshow.
There was something on Grenfell tower enquiry. “Wasn’t there a fire?” Yes mum.
A door fell of a plane. “Wouldn’t they have all got sucked out?” Possibility.
Blurted out 3 answers to questions on celebrity weakest link. Before asking me what’s this all about…
“ooooh! Is that the Hulk??” He is. I didn’t expect her to know that one…. As she seems to be engaged bt CGI nonsense..

She’s 94 years old..
She will always have my respect Dispite the adversity.
Laugh like drains. Life life to the fullest….

 

[Pipp]

I salute anyone who can manage to support loved ones through dementia. Having dealt with it in a grandmother, partner’s grandmother, my father, my mother in law over many years, particularly the latter two, it is one of the hardest things to have to do. It can take a toll on every aspect of life. Your own health, physical and mental, your personal relationships, career, finances, social life. It is vital to get support from wherever you can.

It helps if family members can share the care. The person you knew is still there, though muddled. I always found it best to just go along with whatever or wherever they thought they were. Songs, music and stories from past were a comfort. Humour, too. No matter how difficult spending time just talking, and listening, no matter how repetitive the conversations got.

Of course, it is hard enough caring for the older relatives with dementia, but more so if it is your partner. You slowly lose the person you knew. It is a situation I and my partner could quite easily find ourselves in , considering family history. So living for today, and making sure plans are in place, such as Lasting Powers of Attorney, for health and finance are set up, ready for all eventualities has been a priority.

All power to those who are providing care currently. Make sure you get time for yourselves. Rest, and go again.