Some input for someone who just got into this

[canary]

My mum had Alzheimers, but she still recognised me and other family members when we visited, right up to the end.
Forgetting who people are and not recognising them is one of the things that the general public latch onto as being an Alzheimer "thing" - but it isnt always true.

 

[JohnGroban]

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

Thanks, Lemonbalm. I will check it out.

Yeah, the time strikes me a bit odd. And I realized that around that hour it all started on that Monday. Around 3-4 she told mum she was not my mum, then around 5 I arrived at their house to see it from myself. And from that point, you know the story.

 

[JohnGroban]

Seems like she is getting agitated.
They checked for an Urinary infection, but couldn't find anything, so I reckon it must be the disease taking over.

Hope the doctor will see her soon this week.

 

[lemonbalm]

You grandma's in a good place by the sound of it. I'm sure they will find the cause and sort it out. The staff will probably be taking note of when it happens to see if there is a trigger (often personal care can cause agitation, for example or mealtimes) or it may just be she needs some tweak in medication. She's in good hands.

 

[JohnGroban]

She is, yeah.

Might be the change of seasons that doesn't go well with sundowning? I am curious it might create confusion because at the end of the month when we will change the hour to the summer one, basically losing an hour.

In October everything happened just a few days after we went to the winter clock.

 

[JohnGroban]

So the doctor saw her and she went back to normal after he saw her. Well, ”normal” before the last week, so she is content and calm again.
The head nurse told mum she noticed that grandma feels better after she gets attention from someone important (this case, the doctor).

He did not change her diet. Asked why and he said his purpose is not to sedate her, but to keep her content and ”alive”, but from time to time she must get that one pill they have in case of something happens.

Now, I want to ask you something.
The past 5 months opened a new world for me and is it just me, or Alzheimer/dementia is accelerating around us?

Sunday my boss's mum, a doctor who helped us at the beginning with grandma, had a stroke and now she has big signs of alzheimer. Then, when I went to grandma's house last weekend I've noticed an ambulance outside the building. Later I found out a neighbor of hers took a fall on the stairs and when she woke up dementia was there. She died 2 days later.
Also learned that some distant cousins of grandma have it also.

Is it me who now can see this, or it is actually spreading?

 

[lemonbalm]

Hello @JohnGroban

Glad to hear that your grandma is doing well. I do think a doctor's visit can be beneficial in a lot of cases, perhaps provides some extra reassurance to the person that they are really being listened to and looked after.

I think you are probably just much more aware of dementia now that you have a family member who has it. The main risk factor in dementia is age, although it is not a natural part of aging, and I assume these people you mention are all elderly. There are a lot of elderly people around. We are all living longer than we used to, so the number of people with dementia is increasing.

There is an interesting online free course about dementia which you might be interested in doing at some point:

Understanding Dementia MOOC

Understanding Dementia is a free online course that builds upon the latest in international research on dementia.

www.utas.edu.au

 

[JohnGroban]

Hello @JohnGroban

Glad to hear that your grandma is doing well. I do think a doctor's visit can be beneficial in a lot of cases, perhaps provides some extra reassurance to the person that they are really being listened to and looked after.

I think you are probably just much more aware of dementia now that you have a family member who has it. The main risk factor in dementia is age, although it is not a natural part of aging, and I assume these people you mention are all elderly. There are a lot of elderly people around. We are all living longer than we used to, so the number of people with dementia is increasing.

There is an interesting online free course about dementia which you might be interested in doing at some point:

Understanding Dementia MOOC

Understanding Dementia is a free online course that builds upon the latest in international research on dementia.

www.utas.edu.au

Will look into that. Thanks!

 

[CarolandVic]

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.

Hi John. I feel for you so much. My Mum is 92 and although there were obvious signs of early dementia she was able to be at home and look after herself. However, she developed sepsis and after 12 weeks in hospital she came to live with me. It was difficult because she didn't trust me and told the family I was stealing from her. That I'd never been any good. Just before the first lockdown she insisted on going home. She became worse with her accusations, accusing carers of stealing from her.. In the end she was put into a care home by social workers for her own safety. Before that, her little dog died one night and now she tells everyone that I killed Penny and have now put her in a home so that I can steal her house and sleep with her neighbour! This seems to be common, to blame everything on the daughter. I hope that the shock and grief that you are feeling will get less and that you can enjoy time with her in her new home.

 

[JohnGroban]

Hi John. I feel for you so much. My Mum is 92 and although there were obvious signs of early dementia she was able to be at home and look after herself. However, she developed sepsis and after 12 weeks in hospital she came to live with me. It was difficult because she didn't trust me and told the family I was stealing from her. That I'd never been any good. Just before the first lockdown she insisted on going home. She became worse with her accusations, accusing carers of stealing from her.. In the end she was put into a care home by social workers for her own safety. Before that, her little dog died one night and now she tells everyone that I killed Penny and have now put her in a home so that I can steal her house and sleep with her neighbour! This seems to be common, to blame everything on the daughter. I hope that the shock and grief that you are feeling will get less and that you can enjoy time with her in her new home.

Thank you so much for your kind words.
Since that moment I posted that it seems a lifetime passed, but I have to say everything was for the better for her.

And this place, the people here were my safe place and helped me a lot on what to do.

 

[CarolandVic]

Thank you so much for your kind words.
Since that moment I posted that it seems a lifetime passed, but I have to say everything was for the better for her.

And this place, the people here were my safe place and helped me a lot on what to do.

You are so right. My hubby is in the last stages of vascular and I have been helped and comforted so much by the lovely people here. Take care.

 

[JohnGroban]

You are so right. My hubby is in the last stages of vascular and I have been helped and comforted so much by the lovely people here. Take care.

You too.
Someday everything will be better.

 

[JohnGroban]

The odd news:
Grandma told me today to be careful with dad and take care of him. We never mentioned to her he had those health problems that I told you guys about, before the holidays, so no idea how she knew that.

Well, looks like this is weird.
We rushed dad to the hospital again today. Same heart problems from December.

 

[JohnGroban]

Been a difficult couple of weeks.

My dad's health isn't getting any better and we still can't understand what is wrong with him. Getting super tired and has a swollen belly and legs. Those are signs of cardio insufficiency, he is taking some medicine for that, but they don't seem to work.
Add to that the fact he is a bit hypochondriac, so non stops visits to doctors, when he shouldn't leave the house.
I think it must be emotional with him. Can't figure anything else if all of this started the second day after the incident with grandma.

Huge stress for me this + I am amazed how grandma is telling us (without knowing how dad is) to take care of him. It's like she is feeling something.

On the other hand, grandma's condition is slightly declining. Yesterday she had a big fit, it was the birthday of the head nurse so she wanted to gather all the residence for a nice meal, but grandma refused to do so and then had a fit with the staff, accusing them of stealing some imaginary clothes and refusing to give her the medicine.

We visit her earlier and she looked ok, a bit tired, goes along with the horrible weather + recovery from yesterday.
I am concerned she has a big, big antipathy towards her roommate. Close to hate. Asked her if she wants us to move her to another flat there or speak to get her a new roommate, she firmly declines, so I have no idea what to make of this. Half of our talk when we visit is her complaining about her roommate.

We are currently in a sad status quo.

 

[Weasell]

Sorry to hear of your troubles.
My mother also has heart failure ( I think cardio insufficiency is a posh way to describe heart failure).
My experience is they don’t actually have much in the tool box to deal with it. A diuretic and a beta blocker being quite common!
The good news is my mother is 91 !
All her ‘ healthy’ friends have been falling off their perches and she soldiers on with her heart failure and dementia !

 

[JohnGroban]

Sorry to hear of your troubles.
My mother also has heart failure ( I think cardio insufficiency is a posh way to describe heart failure).
My experience is they don’t actually have much in the tool box to deal with it. A diuretic and a beta blocker being quite common!
The good news is my mother is 91 !
All her ‘ healthy’ friends have been falling off their perches and she soldiers on with her heart failure and dementia !

All the best to your mum!
My dad is still young, he will be 66 in april. It's odd because his heart tests the past weeks all came back good, so the doctors think it might be a combo of his spondylosis & anemia that is causing him to be tired and swollen.

My dad was always the fella that for a flue he went to a doctor. When I was a kid and had, don't know, a small upset, fever, etc, you couldn't talk to him anymore. He was in a trance. So, of course, now his troubles are 10 times worse because he worries super much.
The second day when it happened to grandma, my OH pointed out she never saw my dad like this. Ever. I did not pay attention because all of my concerns are with grandma, but fast forward and here we are with him.

 

[lemonbalm]

Hello @JohnGroban

I was wondering how things were going for you earlier. Sorry your Dad's not so good. I hope he turns out be be as resilient as @Weasell 's mum.

I wonder if your grandma was agitated by all the commotion if the nurse was trying to get everyone together. for a birthday meal. Noise and lots of movement can be quite disturbing for anyone with dementia. It's always been one of the main triggers for my mum.

It's interesting that your grandma doesn't want to move out of her current room. Perhaps she enjoys having a bit of a moan about her room mate but actually likes her company.

 

[JohnGroban]

Hello @JohnGroban

I was wondering how things were going for you earlier. Sorry your Dad's not so good. I hope he turns out be be as resilient as @Weasell 's mum.

I wonder if your grandma was agitated by all the commotion if the nurse was trying to get everyone together. for a birthday meal. Noise and lots of movement can be quite disturbing for anyone with dementia. It's always been one of the main triggers for my mum.

It's interesting that your grandma doesn't want to move out of her current room. Perhaps she enjoys having a bit of a moan about her room mate but actually likes her company.

Could be, I think we are actually witnessing the progression of dementia. I think she got tired of the place and the people there.

 

[JohnGroban]

Phew, some updates.

Had (and still have) issues with dad's health. After my last post, we got him out of the hospital and a few days later we went back. It looks like they identified (finally) the issue: pericarditis
He has water around his heart which is why he was so swollen. They took it out, but still, he is not super fit so he might need an operation.
I wanted to take him to private super expensive hospitals and they've refused me due to the covid pandemic. I've never seen this, refusing my money. The medical systems are really collapsing in Europe.

Going back to grandma, she is ok, I might dare to say she is good. The staff changes her routine. They noticed if she has a schedule, she becomes upset, etc, so they are constantly changing it and she does not have time to "stay" and let dementia kick in. For example, they ask her to go down to eat, not in her room, changed the hours when she is having a bath, etc.
Overall things are good with her.

But I want to tell you something, today she brought me the pack of some biscuits I bought her, she cut the paper fantastic and brought it to me so I can buy her next time the same. It might sound stupid, but I had tears in my eyes. How she cut it, etc and remembered something. As I was waiting for dad in front of the hospital, because I wasn't allowed in, an ambulance came with an old lady that had dementia.
The ambulance doctors were talking with the hospital doctors about her and about they have no idea what to do with her. The family called the ambulance, put the old lady in and said they don't care about her, now is the doctors' problem and left.
So I know it's hard for all of us here, but just remember there are people like that out there. And when we think we are not doing enough for our family, remember those ... humans and how much we fight for the good of our loved ones.

 

[lemonbalm]

Hello @JohnGroban

I was wondering how your Dad was doing. Good that the problem has been identified and I hope that the treatment works well for him. Covid has certainly taken centre stage and nothing else seems to matter. Hopefully that will change soon.

It's great to hear how well your grandma is doing. The staff sound wonderful. You did well to get her into such a good place.

Lord, that poor lady. I wonder where she will end up. Perhaps the family were desperate. Even so, it sounds incredibly cruel.