Some input for someone who just got into this

[lemonbalm]

Hello @JohnGroban

I was wondering how things were. Your grandma sounds pretty settled in general. She certainly is doing well for 95! It's a good idea to take things when you visit. It's something to talk about and a good distraction. Very sensible for your mum to visit less often than you do.

It sounds as though your Dad might be having panic attacks (I assume the ER didn't find a physical cause for the symptoms?). I hope he feels better once the operation is over and hope that goes smoothly. It must be a big worry for all of you.

Take care too

 

[JohnGroban]

Hello @JohnGroban

I was wondering how things were. Your grandma sounds pretty settled in general. She certainly is doing well for 95! It's a good idea to take things when you visit. It's something to talk about and a good distraction. Very sensible for your mum to visit less often than you do.

It sounds as though your Dad might be having panic attacks (I assume the ER didn't find a physical cause for the symptoms?). I hope he feels better once the operation is over and hope that goes smoothly. It must be a big worry for all of you.

Take care too

I am 90-95 % when that night happened with grandma, dad got so scared he had a heart attack and ultimately led to pericarditis.
Until he visit the doctor, he was fine, he was taking his medicine, all undercontrol, so that is why I am almost certain it is that.

 

[JohnGroban]

Wanted to ask your opinion on something.

As I noticed, grandma moved around into different rooms, the staff tried a lot to accommodate her, but she doesn't want to stay with other people and when she stays she doesn't like them.
For the past month, she is staying with two roommates and that means less money (we have our contract with her and just another person, the package for three is less).
I did not talk with them about this because they might move her again and as I said, they really care for her.
Should I or let it go and see what happens? There is a 250-pound difference.

 

[JohnGroban]

Here I am once more in a pickle and I would need advice from the outside

Went to visit grandma today and was again a nightmare. Since I entered the garden and she saw me without mum, she started blaming me for everything, saying she will kill herself, cried, everything you can imagine. I stayed 20 minutes, but seemed like days. Hard things to swallow, but as you mentioned, it gets better with time and somewhat learned not to make a lot of it, even if it hurts.

But my question is this: am I doing the right thing telling mom to come less? To protect her from seeing grandma like this with all of what happened is happening now with dad?
I believe I am doing the right thing in my need to protect my mum and my dad for seeing grandma the way she and not have this memory of her, but am I fair?

 

[lemonbalm]

Hello @JohnGroban

Sorry you had a bad visit today. Those are difficult to get out of your head. The only thing to do is hope for a good visit next time and check in with the staff to see how she is in the meantime. Is your grandma still with 2 room mates? I wonder if perhaps that doesn't suit her so well. If it does, and seems permanent, you could perhaps ask about a reduction in fees. Of course, it could be so many things resulting in a bad visit. Do the staff say your grandma is reasonably settled?

Anyway, you asked whether you are doing the right thing telling your mum to visit less often. It's so hard to know for sure. I would probably be doing the same as you to protect her. Maybe keep things as they are for now, let your mum concentrate on your dad until after the op and recovery, and take it from there. I think you are a very decent and thoughtful person doing his best for everyone else, so you certainly shouldn't feel bad about it!

 

[JohnGroban]

Hello @JohnGroban

Sorry you had a bad visit today. Those are difficult to get out of your head. The only thing to do is hope for a good visit next time and check in with the staff to see how she is in the meantime. Is your grandma still with 2 room mates? I wonder if perhaps that doesn't suit her so well. If it does, and seems permanent, you could perhaps ask about a reduction in fees. Of course, it could be so many things resulting in a bad visit. Do the staff say your grandma is reasonably settled?

They will move her again tomorrow and we will see what happens next. One of the things she mentioned today, while shouting, was everyone is leaving except her (not true) and that mom told her she will take her to stay with her (she did, but to calm her last time she went, a month ago).
She badmouths her 2 roommates. Calling them names. Annoyed one of them is doing her needs on herself and not using the toilet.

The staff said she was reasonably settled and she looked that way today until she saw mum was not present. Her face changed in a heartbeat and the fiasco started. So our presence is what is causing her to act like that because we are not taking her home.

 

[JohnGroban]

They moved her yesterday.
And today she asked to be moved back with those two.

Really does my head it.
But at least she talked with mum on the phone today.

 

[JohnGroban]

Things are semi quiet a bit:

Grandma: She moved again in a decent room, alone. She stood there for 3-4 days, then asked to go back with those two in the previous room. The head nurse was saying she might actually went there to rest and "recharge" then went back to those two, to see what they were up to and have motives to get annoyed.
She is very, very focused on going home. Obsessed. Tuesday I am going with mum to see her and I am afraid of what she might do again. Cry, threat, etc.
It sounds horrible, but this status quo is hard to take. And grandma being more ok than bad hurts me because I can see her suffering of not going home.

Dad: Monday he went to the hospital to get the surgery, however, because there are no places in the ICU, he still did not do it. His hospital roommate is there for 2 weeks now, still waiting for the surgery. I am baffled.

 

[canary]

Im sorry that your dad did not get his surgery. Unfortunately this seems to be happening more and more at the moment. There are so many people with covid taking up the ICU beds that other surgery is having to be delayed. I hope that he gets the surgery done soon.

It sounds to me like your mum is not going to be happy where ever she is. I suspect that even if she went home she would be complaining and saying that she is lonely and wants to go back to the care home!! So many people with dementia are unable to understand that the confusion and other problems that they are getting are due to their dementia, so they think that if they go somewhere else - home, childhood town, another relative, change room mates, or even go out for coffee and cake - then they will leave all their problems behind, not realising that they will simply take them with them.

 

[JohnGroban]

Im sorry that your dad did not get his surgery. Unfortunately this seems to be happening more and more at the moment. There are so many people with covid taking up the ICU beds that other surgery is having to be delayed. I hope that he gets the surgery done soon.

It sounds to me like your mum is not going to be happy where ever she is. I suspect that even if she went home she would be complaining and saying that she is lonely and wants to go back to the care home!! So many people with dementia are unable to understand that the confusion and other problems that they are getting are due to their dementia, so they think that if they go somewhere else - home, childhood town, another relative, change room mates, or even go out for coffee and cake - then they will leave all their problems behind, not realising that they will simply take them with them.

In the past two months, there were two occasions mum and I tried to explain to her what happened, what she did, and why she is in a nursing home. We were naive and tried logic and she called us liars, she never did such a thing and it was all a fantasy we are telling her.

We have two options:
1) we keep on going with this and accept her suffering and wanting to go home (suffering she is alimentating, because she is super well-taken cared of).
2) give her the chill pills that they have a prescription for, those who will make her stay in bed.

So it's simple and difficult. Option 2 is out of the question, so we have only option 1.
But we don't know how to make it better because she is making it super hard for us with her stubborness.

 

[lemonbalm]

Hello @JohnGroban

Sorry to see that your Dad's surgery has been delayed. That must be very stressful for you all. I hope that is rescheduled soon.

It does sound as though your grandma would be rather lost and lonely even if she were able to go home, so be assured that she is where she needs to be. She seems to enjoy company, even if she does complain about it.

What are these "chill pills" you mention? If they are to calm your grandma or lift her mood, which may improve her quality of life, they are surely worth trying aren't they? My mum is on very hefty drugs now but she is near the end, already bedridden, and they are to make her comfortable. I'm not sure a doctor would prescribe anything for your grandma so hefty that staying in bed would be the result at this stage.

 

[JohnGroban]

What are these "chill pills" you mention? If they are to calm your grandma or lift her mood, which may improve her quality of life, they are surely worth trying aren't they? My mum is on very hefty drugs now but she is near the end, already bedridden, and they are to make her comfortable. I'm not sure a doctor would prescribe anything for your grandma so hefty that staying in bed would be the result at this stage.

Do not know exactly the name of them. They mentioned, but I didn't care about them because I didn't want them to give those to her.
From my chat with the head nurse, their effects are to make a patient sleepy and calm, rather than improve the quality of life. She and often the past head nurse told me they don't want to give it to her because they want her to be like usual, active, alive, etc. Even if it's more work for them, they want her to keep her on her feet and not in the bed, sleeping all day. I trust them on this.

But I am more convinced our problems are more related to her stubbornness, rather than her dementia.
I've been told she didn't have a single sundowning moment for 6 months now. The disease is somewhat under control.
She doesn't accept what happened, she doesn't understand she is ill and we cannot convince her.

 

[Jaded'n'faded]

In the past two months, there were two occasions mum and I tried to explain to her what happened, what she did, and why she is in a nursing home. We were naive and tried logic and she called us liars, she never did such a thing and it was all a fantasy we are telling her.

We have two options:
1) we keep on going with this and accept her suffering and wanting to go home (suffering she is alimentating, because she is super well-taken cared of).
2) give her the chill pills that they have a prescription for, those who will make her stay in bed.

So it's simple and difficult. Option 2 is out of the question, so we have only option 1.
But we don't know how to make it better because she is making it super hard for us with her stubborness.

She's not being stubborn, she has dementia. She's just trying to make sense of things as they seem to her and she wants to go 'home' because she thinks if she does, everything will be all right again. It won't.

There is nothing you or your mum can say to her that's going to change how she feels. You've told her over and over why she is where she is but she refuses to accept it. Again, not because she is stubborn but because she just can't believe what you are telling her. Therefore, her dementia logic tells her you must be lying or out to get her. If you thought that about the people around you, you would be scared and angry too.

Option 1 is not a good idea, firstly because she's stuck in this loop and is clearly suffering. Explaining is actually making things worse. You really can't hope she will suddenly understand and accept what you say.

Option 2 is a better idea. Medication could reduce her anxiety considerably. She isn't going to get better I'm afraid, she can't go home so you're left with the option of trying to make her happier where she is. There are vaious anti-anxiety meds that can be tried - it doesn't have to mean she turns into a zombie. She is angry, fearful and anxious. Please consider medication as it could really ease her suffering. Wouldn't it be better for all if she wasn't angry with you and your mum every time you visit? It's not as if there's anything you can do to change the things she's angry about.

 

[JohnGroban]

She's not being stubborn, she has dementia. She's just trying to make sense of things as they seem to her and she wants to go 'home' because she thinks if she does, everything will be all right again. It won't.

There is nothing you or your mum can say to her that's going to change how she feels. You've told her over and over why she is where she is but she refuses to accept it. Again, not because she is stubborn but because she just can't believe what you are telling her. Therefore, her dementia logic tells her you must be lying or out to get her. If you thought that about the people around you, you would be scared and angry too.

Option 1 is not a good idea, firstly because she's stuck in this loop and is clearly suffering. Explaining is actually making things worse. You really can't hope she will suddenly understand and accept what you say.

Option 2 is a better idea. Medication could reduce her anxiety considerably. She isn't going to get better I'm afraid, she can't go home so you're left with the option of trying to make her happier where she is. There are vaious anti-anxiety meds that can be tried - it doesn't have to mean she turns into a zombie. She is angry, fearful and anxious. Please consider medication as it could really ease her suffering. Wouldn't it be better for all if she wasn't angry with you and your mum every time you visit? It's not as if there's anything you can do to change the things she's angry about.

Sadly, we do not have access to the same medication available in UK or the US. From what I've read and talked with different people, she is getting the best medication available for her.

Believe me when I say stubbornness is a huge part of this. Besides all of this, since my early days, grandma was a super lovely woman, but very very stubborness.
Here are two examples small examples:
1) Everything about her/her house had to be her way. He had a broken fridge and refused to let us buy a new one because it meant she will consume more electricity.
2) Not having the utilities to keep her home with a nurse is due to her knowing better in the past that she doesn't need a fully functional house.


Any discussions about these subjects made her angry.
And I can assure you before November, dementia was not present. Maybe slim signs of Alzheimer, but not even 1%
But always, always, things had to be done in her way.

 

[JohnGroban]

Sadly things accelerated with dad.
Saturday in the morning he was told by his hospital roommates that he was very agitated during his sleep. I believe (not sure), they told him they were afraid he was suffocating. After a brief chat with the doctor, he started feeling ill again so he was connected to the machines to help him breathe and was sedated.
That was the last time we spoke. Earlier today he got the surgery, it was ok, however, he is having big respiratory problems. Also, he has water on the lungs, ankylosing, and also signs left by the Tuberculosis he had in his youth.
So the fear now is he can't breathe without the machines, even if the surgery was a success.

He might not make it.

My friends, please, I urge you to take care of yourselves. As you've seen my journey here, grandma's dementia was a big, big hit on dad's health. We all are fighting a huge fight here, but we need to take care of ourselves and our loved ones, we are not immune and we are stressed and tired. Don't let this happen to you too!

The next days are crucial. I have to expect for the worse, even if I hope everything will be ok.

 

[lemonbalm]

Oh I’m so sorry to read your post @JohnGroban . I will be thinking of you and your family and hoping that your Dad makes a full recovery. Sometimes life throws an awful lot at us all at once. Sending you some virtual strength and a hug ? which we all need from time to time.

 

[Bunpoots]

I hope your dad pulls through @JohnGroban

 

[Scarlet Lady]

Hi, John. So sorry to hear this about your dad. Sending all good wishes to you and your family at this awful time.

 

[JohnGroban]

Everyone, thank you.

 

[JohnGroban]

Sadly, there are very slim chances he will make it.

They stopped the machines today and he couldn't breathe alone so they had to connect him once more.

His lungs are very affected. The medic from ICU told me no one came back from his situation. I am tired of trying to find out who is guilty, what was the cause, etc.
I didn't call him back when he told me to on Saturday. That was my last interaction.

I can't even cry right.