Some input for someone who just got into this

[JohnGroban]

Hello everybody,

My name is John and I am writing you about my grandmother, a fantastic 94 years old woman. When I mean fantastic I really mean it, a woman that took care of everyone and never ask any people for anything.

She lived in her own apartment, but didn't leave the house as my mum, my dad or me came to bring her groceries. Add to that, we spoke about 3-5 times per day with her on the phone.
She was a really really sane person. Had her small fixations, but that came with age.
Until thursday.

Thursday when we called her in the morning she told us she tripped and her hand is bad. We rushed her to the hospital and indeed it was and needed to be operated, but we put it in a gypsum because an operation at this age is not recommended. So my parents took her their home to take care of her during the recovery.

All went semi well until monday. In the morning she was good, at lunch time she started talking about some basil no one understood what about. At 17:00 she couldn't recognize my mother and my father, I rushed there and she knew me. I left about 20:00.
Then, at 2 in the morning the phone call that killed every inch of me came: My mom was crying, while my grandma was shouting in the background they are trying to kill her and take her apartment.
Duo to covid, the ambulance came in 3 hours, 3 hours when she tried to hit them with her gypsum, phone or anything. The calmed her down and said simple: dementia.

Nothing prepared me for that. I am really a though cookie, or I consider myself at 33, but since that phone call until later on I could stop my hands from shaking. I was on the phone early in the morning with elderly homes to take her, to avoid a tragedy. All of them had 24 hours policy due to covid, but I somehow managed to take her to get special help with people that are prepared, but most of all, an elderly home that actually takes care of her.

Her mom went the same way, dementia. So probably is genetic.
I am calm now, as it is for the best, I think, but I am beyond broken. I can't understand how something like this can happen so quicky, without a sign, without anything.

That woman raised me, raised everyone, she doesn't deserve this **** to happen to her. It is really not fair.

So, please, If anyone has some input on this, do share.
It really help to talk with people that went through this.

Thank you,
John

 

[canary]

Hello @JohnGroban and welcome to DTP

I am so sorry to hear about your grandmother - that must have come as a terrible shock.

I have three thoughts about things
Firstly - can you get a doctor to check her for an infection as this is the most common cause of sudden escalation of dementia symptoms.
Secondly, you may be looking at delirium caused by pain. What pain relief is she having for her hand and is it sufficient?
Thirdly, people with dementia can often hide the symptoms for a long time, especially while they are on the phone. I used to visit mum occasionally and mostly talked to her on the phone and everything seemed absolutely fine until she suddenly accused an old and very dear friend of hers of stealing from her (which I knew would never happen) and I suddenly realised that she must have dementia. I got her to stay with me for a weekend and I was appalled at how bad she was, especially during the night. I seriously had no idea, although, with hindsight, there were things that she had said that i suddenly saw in a new light. It was downhill very rapidly after that and within a few months she hit a crisis and moved into a care home.

Im glad your grandmother is now being looked after properly. Once covid is over and restrictions are lifted, you will be able to visit and re-establish a relationship.

 

[Grannie G]

Hello John. @JohnGroban. Welcome to Dementia Talking Point

Is it possible your grandmother had dementia which was mild, once called senile dementia, which wasn`t recognised ? Many people can have dementia without showing obvious symptoms until something like an infection happens and this changes everything. People with dementia have much more severe reactions to infections than people who do not have dementia.

It`s much more of a shock when this happens rather than noticing a gradual progression, but on the other hand you have all been spared years of worry.

I know this won`t help you just yet, you are still in shock but it is what it is and at least you have been able to find a good care home.

Stay with Talking Point. I`m sure you will be well supported.

Meanwhile your grandmother is not yet lost to you. You now have the opportunity to return the love and care she gave you and your family even if she doesn`t appear to recognise it.

 

[Weasell]

I was just about to say it sounds more like delirium to me!
If it is delirium that could be good , from the recovery point of view, though at that age it may be doubtful if she will return to her ‘ previous trip’ level of ability.
wishing you well.

 

[lemonbalm]

I would agree that this rapid and dramatic change is likely to be delirium from pain or infection. With the right treatment and a bit of time, hopefully your grandmother will make a good recovery, although, as already mentioned, she may not be back to how she was, or was appearing to be, before. Well done for getting her into a place which can give her the care she needs.

Please be kind to yourself. You are probably in shock. Let us know how your grandmother, and you, are getting on.

 

[Weasell]

Delirium - Symptoms and causes

www.mayoclinic.org

This is the link to a nice ‘easy read’ Delirium page.

 

[Weasell]

A day clock is a great gift for someone with delirium.
you can get digital ones on eBay or amazon.
They can help a confused person understand day and night.
I provide a link to an analogue one.

Day and Night Clock – Alzheimer’s Society Shop

Supplied by Ravencourt, the Day and Night Analogue Dementia clock gives you features of a traditional clock but with added benefits of day and night prompts.

shop.alzheimers.org.uk

 

[JohnGroban]

Thank you everyone for your input.

Since I post, the doctor from the clinic saw her. She has medium dementia. We will have call today with him to see the next steps for us and what can we expect

Now, about her previous signs, the more I think, the more I see some things, but I have no idea if these are for that. I will write down and maybe you can understand it better than us.

1. She lived alone
2. She always was afraid to disturb anyone, always concerned about the opinion of people about her.
3. For 20 years she had a tv, a broken one, always refuse to change it. When we did, she used it for two days at most.
4. Always her bills were really low because she didn't use that much the gas, electricity, water.
5. Her major scare was that she missed a day from paying the utilities
6. For over 10 years she didn't use a fridge because it broke and didn't want another one.

These are just a few things that pop up into my head. She used to say a lot of the same stories, but again lucid. She knew. At 17:00, when I was there, she was going on and on about her house, utilities and pay everything.

And why is the night that bad? According to the doctors again last night was a difficult one, while during the day she is okish.

 

[canary]

Yes @JohnGroban , those are the sort of stories that you start to see with new eyes.
My mum was always complaining that her washing machine/TV/heating wasnt working properly, but it was only later that I realised that she probably could not remember how to use them. Another thing I remember was her telling me how much she loved living in her village. She said that everyone was so friendly and they would say hello and exchange a few words, even if they didnt know you. At the time I took this at face value, but later it occurred to me that the people who stopped and talked to her did know her, but she no longer recognised them.......

Everything geting worse in the evening and during the night is called sundowning. Its a recognised symptom of dementia, but no-one knows exactly why it happens, although there are a few theories

 

[JohnGroban]

Everything geting worse in the evening and during the night is called sundowning. Its a recognised symptom of dementia, but no-one knows exactly why it happens, although there are a few theories

Can you point me out to some relevant ones and not some hocus pocus fake news? Would much appreciated.

I double checked the medicine with other friends and they say it is quite good, so I am more relieved a bit after that.
Tomorrow we are going there to bring her some other clothes, get her the medicine and also give some present to the staff, some cookies, something.

 

[canary]

"Can you point me out some relevant ones and not some hocus pocus fake news?"

Here you go -

Sundowning and dementia

Sometimes a person with dementia will behave in ways that are difficult to understand in the late afternoon or early evening. This is known as 'Sundowning'.

www.alzheimers.org.uk

Sundowning (changes in behaviour at dusk)

Sundowning is a term used for the changes in behaviour that occur in the evening, around dusk., and experience agitation or anxiety.

www.dementiauk.org

Tips for Coping With Sundowning

Get tips for coping with sundowning—restlessness or agitation in the late afternoon and early evening in a person with Alzheimer's.

www.nia.nih.gov

Sundowning: Tips for dealing with late-day confusion

Sundowning isn't a disease, but a symptom that often occurs in people with dementia.

www.mayoclinic.org

 

[JohnGroban]

Thanks a lot, Canary!
It means a lot.

 

[JohnGroban]

Some updates.
Finally last night I slept a bit, but I had fever. I was afraid in might be covid, but took the test and I am ok, so I think all stress and pain was the reason.

Went today to visit her, just drop clothes and bring her the medicine the doctor needed and saw her in the living room, she made a friend and they were holding hands. Almost burst into tears, but felt some confort knowing she is semi calm.
According to the nurses and doctors, she is still as she was that night, talking about her apartment, that my parents are trying to kill her, that she needs to pay the bills, etc and that they turned me against her also.

For the moment we are not allowed direct contact, but we agreed that when it will be possible, I will go the first 1-2 times to see how she will react. I am trying to avoid my mum going because it will break her heart listening to grandma.

I feel ok, better than yesterday, but I want only to sit on the couch and watch Netflix and from time to time, there are tears into my eyes.

 

[lemonbalm]

It will take a while for you to get over the shock of what's happened and to adjust to how things are @JohnGroban . It is good to hear that your grandmother seemed calm and that she is interacting well with other residents. Holding hands with another resident will be good for both of them. Hopefully, with a bit of time and the right medication, your grandmother will be content. Please try to look after yourself (not easy I know). When my mum has a bad patch, I am often awake in a "lather" so I guess your fever is possibly due to stress but do keep an eye on your own health. It is very easy to neglect ourselves when we are so concerned for others. You grandmother is in good hands. Keep posting on how things are going.

 

[JohnGroban]

Thanks @lemonbalm

It is hard, really hard. I just hope it gets better.

 

[JohnGroban]

Curious, but do they suffer in any way? I mean physical pain? Do they feel anything when they get angry?

 

[JohnGroban]

Some small updates.

She still has very agitated nights, but from what I understand, she is a bit better than she was.
According to the person who takes care of her, grandma said she knows she is in a hospital, and asked the staff to inform her three daughters where is she.

She has only one daughter, my mum. And a son who lives in the NYC, but who wasn't that preoccupied about her in the past decade or so. But also grandma had another kid who died when she gave birth to it. No idea if it was a boy or a girl. So this was curious, but painful as ****

Now, I decided I will keep the communication with the center, as news like this will destroy mum more than she is right now. Grandma will say a lot of things that will hurt mum and I am afraid for her health, as she is 65. So everything that she will say and any bad news will come directly to me.

I hope I made the right call.

 

[lemonbalm]

It's good that your grandma seems to be settling @JohnGroban.

It's easy to torture ourselves imagining what our loved ones with dementia are thinking or feeling . It's best not to try to analyse or make sense of everything they say though. A thought your grandma had, which you may now dwell on, will have probably have gone in an instant for her.

My mum can literally scream one moment and smile the next.

This all takes an awful lot of getting used to. If you want to protect your mum from anything which would upset her, that is very kind, but keep posting here so that you have support too. Don't try to deal with everything on your own.

It sounds as though your grandma is being well looked after and is where she needs to be. Take comfort from that.

 

[JohnGroban]

Thank you @lemonbalm

That what I want also, to keep posting here, to shout, to scream, to cry.
I want to understand her, I want to know she is not hurting

There are sooo many thoughts going on my mind. I am trying every distraction, but I keep on going back
I hope everything is for a purpose, for a higher purpose for her, but for the moment I can't see which and why this happens.

 

[Jaded'n'faded]

I agree with @lemonbalm . My mother could say the most hurtful, awful things, not just about me but other members of the family. As some things (far in the past) were impossible to verify, I was often left wondering if some of the dreadful things she said were true. But many things I knew to be completely false.

It's very hard, I know, to separate what may be true from what is not. It's particularly hard when a comment/accusation is aimed at you, it's like a stab in the stomach and you wonder, 'Is this how she really feels about me? Has she always felt like this?' And it breaks your heart.

When it happened to me, I tried to remember all the really silly, ridiculous things she claimed had happened. I knew these were complete delusions, the product of a failing brain. Then I was able to see that she couldn't possibly be thinking straight when making the personal comments/outrageous accusations any more than when she told me about the man who exploded in the corridor and the truck that had crashed in her bathroom...