Some input for someone who just got into this

[JohnGroban]

Got a talk with the head nurse today, called to ask her how is grandma feeling and she said she is good, the flu is going away. Good news.

Grandma is her usual lovely way during the day, but at night, that sundowning ... thing is there. Making her angry, shouting, imagining she is in her house and there are "those people".
Is there any way to fight this? She has clocks in her room, has pictures with us, etc, but they don't work.
The nurses help her be calm again, but it happens almost every night.

 

[lemonbalm]

Hello @JohnGroban . Sun-downing is tricky. The atmosphere in my mum's care home can change quickly late in the afternoon but it doesn't normally last very long. Once one resident becomes restless, the other residents can become restless too. I'm afraid my mum can get pretty shouty in the afternoons. She gets agitated when other residents start moving around, going up to the tables ready for supper or trying the door because they want to go "home".

The staff should be looking for any "triggers" that set the sun-downing off and noting what works well to counteract it, so the situation may improve as they get to know your grandma better. There may be medication which can help if it's a big problem which continues.

 

[JohnGroban]

It stars usually when she needs to go to the toilet during the night.

 

[lemonbalm]

Ah, my mum can get very distressed when she needs the loo. I think it's understandable, it's such a palaver and she's unable to manage on her own. I doubt she knows where she is when she wakes up and doesn't know how to get help. The staff come up as soon as the sensor sounds but it's all very undignified and unsettling I think and makes me glad that she probably can't remember it.

Perhaps your grandma will be more settled at night given time. Is she shouting for assistance, do you think? Care homes normally have help buttons but most residents with dementia aren't able to use them. Otherwise, she may just be confused when she wakes up and isn't sure where she is.

 

[canary]

imagining she is in her house and there are "those people" .................... has pictures with us

Im wondering whether these two are related. Often, people with dementia do not recognise family when they are sundowning and I know my mum got to the stage where she thought that people on TV and photos were real and actually in the room.

 

[JohnGroban]

Im wondering whether these two are related. Often, people with dementia do not recognise family when they are sundowning and I know my mum got to the stage where she thought that people on TV and photos were real and actually in the room.

I think probably not because ”those people” was the first thing when we got alarmed. At first those people were mum and dad. Now those people are anyone, from the nurses, probably even me if was there.
She has a roommate there, so maybe even that lady can be.

@lemonbalm
According to the head nurse, she is shouting: leave my house, but the moment they talk to her and tell her where she calms a bit.
But she can't sleep good. She does it in periods and usually, she is up at 7:30 in the morning.

 

[JohnGroban]

We had a good visit today.

She was super happy seeing us, most of all, my dad and mum. We talked a bit.
She loves the staff and the staff loves her. We found out today she is the older one there, and the most lucid of them all.

It really breaks my heart, man.
She is still saying she likes the staff a lot, but wants to go home because she feels ashamed people are washing her. The same thing she said last time also.
She told me she wants to come and live with me and my OH, she will not disturb us, she needs just a small sofa near our bed and will sit there without saying anything to us or disturbing us in any way.
Really breaks a man's heart when you see she describes my place exactly how it is.

But it was good man, it was really good. The staff are quite fantastic and they really are taking care of them like they are family. Is the best outcome out of this situation.

What I want to ask, how do you "jog" with this "I want to go home thing"? We are telling her soon, soon, soon, every time, or after COVID will pass, etc, but I can feel her stressing on about this.

 

[canary]

The "want to go home " loop is really hard.
My mum wanted to come and live with me too. I tried it over a weekend and it was a disaster. When I told her that it just wasnt going to work her "solution" was that I should give up work, leave my husband and come and live with her!

The problem is that although they appear lucid about some things, they dont really understand the reality of their situation. I think the way you are dealing with it, saying "soon", is probably the best way. Eventually mum moved into her care home and I used the same tactic. I would also take some cake or sweets with me when I visited, so that I could produce them as a distraction when I didnt like the way the conversation was heading. Eventually mum stopped asking.

Shes not been there for very long, only about three weeks, and it can take a good couple of months to really settle. I think your mum is doing really well, actually and Im sure she will settle in time.

 

[lemonbalm]

Glad you had a good visit today @JohnGroban . It can be really tough dealing with the going home thing, particularly if the person is asking to live with you. You can almost hear your heat breaking a little bit more.

The kindest thing is to really just keep making excuses like "the doctor says you need to stay here a bit longer" or "you're not quite well enough just yet". She may stop asking after a while, when she's more settled.

It's good to hear that your grandma loves the staff. Perhaps she will be accustomed to the personal care with time. It sounds a really good place.

 

[JohnGroban]

Glad you had a good visit today @JohnGroban . It can be really tough dealing with the going home thing, particularly if the person is asking to live with you. You can almost hear your heat breaking a little bit more.

The kindest thing is to really just keep making excuses like "the doctor says you need to stay here a bit longer" or "you're not quite well enough just yet". She may stop asking after a while, when she's more settled.

It's good to hear that your grandma loves the staff. Perhaps she will be accustomed to the personal care with time. It sounds a really good place.

I can't believe how lucky I was If you think I had 3 hours to find a place and it was before even the sun was up.
Those people are really the real MVP.

My grandma is quite a lovable person, as I mentioned many times, It's hard not to love her. She lights up the place many, many times.

A funny thing, the head nurse told me that on Christmas Day they will super celebrate here, with a tree, with everything, but most of all, the "Michael Bolton" of my country will come and sing for the elders from the center. I lol-ed a bit, but was super-super glad as my grandma likes him a lot.

 

[JohnGroban]

Today was a weird day for me.
A friend of mine, we know each other for 20 years now, we are not super, super close, but we speak a few times per week, told me his mother, a very healthy woman, suddenly passed away.
She collapsed with stomach pain and died 2 days later after they found a tumor, those type of tumors that are very, very rare.

It's really a really, really bad year.

 

[canary]

Im sorry @JohnGroban , it feels like anything can happen this year
((((((((((((((((((((((((((((hugs))))))))))))))))))))))))

 

[JohnGroban]

I was looking forward to seeing my grandmother tomorrow, but It might not be the case. sadly, due to Covid. It looks like they will limit visits, even if I wanted to do it from the window, we will not be allowed. They will inform us later this day.

Also, it looks like we identified a pattern with her health. So, she is good during the day, okish until she goes to sleep, falls asleep, then around 1-2.a.m. she wakes up and becomes mad, aggressive, shouting for people to live her house, give her back her money. She is full of adrenaline, but she is really a small, small lady, 5 or 5.1, ok weight, not skinny or fat.
She usually calms herself when the staff speak with her.
They are not giving her anything to calm down because all the doctors recommend that and avoid turning her into a vegetable.

I was thinking, because it looks like she reacts like she did in that night, when it all started. Getting mad, that mad at her age, couldn't lead now to a heart attack, vascular accident, etc?

 

[lemonbalm]

Well @JohnGroban . My mum has vascular dementia and also an aneurysm in her brain. She is prone to rages and can be extremely distressed and aggressive, generally in the afternoons (not every afternoon but plenty of them). She is still here....

In my experience, doctors tend not to prescribe things to calm people down unless they are very agitated all the time. If your grandma is calmed by the staff, then that's good. It sounds as though she is confused when she wakes, thinking she is still at home. Perhaps this will happen less often with time.

Visits are tricky all round at present. I hope you can get to see your grandma. I have booked a walk with my mum plus carer next week (this is the only way I can see her) but it looks as though it's going to be cold and wet, so I expect it will be cancelled. I'm not that keen on her being out in the cold and damp - or me, for that matter!

 

[JohnGroban]

@lemonbalm
I am just thinking if her getting mad can trigger something., due to her age.

 

[JohnGroban]

Got the call, so we have to see her on Monday, not tomorrow.
Part because of Covid, part because they don't want to stress her.

Quite annoying, to be honest, but understandable.
I would go and see her daily if it would be possible, but no idea how good that can do to her.

 

[JohnGroban]

This not knowing what's next is really taking a toll on me.
Nothing happened, but is one of those days for me. Before all of this happened, I think I didn't shed a tear for 10 years. Now I am doing it daily, trying to hide as much as I can from my OH or my parents.

I have no idea where a month went since it happened. The shock went, but I am trying hard every single day to keep it together because I know she is well taken care of there.
But it kills me knowing she has bad nights or she might think we left her there, if it could be possible, we would go and visit her every day.

But not knowing what's next, having zero idea how long this might be, it really kills me. I still can't make sense of all of this, how did it all happen, why when she was so old, that she will not go in her home, in her bed. But thinking she might feel pain due to sundowning really hurts me big time.
So many questions, the unfairness of the situation.

She gave me so much, she made me what I am, I don't know why the hell is this happening to her.

 

[lemonbalm]

Hello @JohnGroban . It is hard and, as you say, early days. You're still adjusting, your grandma is still adjusting and the rest of the family are still adjusting. Your grandma seems to be pretty happy most of the time and you need to focus on that, and the fact that she is in a really good place with good staff who are genuinely caring for her. It is very unlikely that your grandma remembers being upset during the night.

Forgive me if I have already mentioned this but someone told me years ago that my mum's dementia would be much harder for me than it was for her and I thought it a very odd, even harsh, thing for them to say at the time. Years later, it makes more sense to me. I have some appalling memories in my head which most definitely aren't in mum's.

 

[JohnGroban]

Forgive me if I have already mentioned this but someone told me years ago that my mum's dementia would be much harder for me than it was for her and I thought it a very odd, even harsh, thing for them to say at the time. Years later, it makes more sense to me. I have some appalling memories in my head which most definitely aren't in mum's.

Thank you for this @lemonbalm
I really mean it.

As hard is this is for me, I think for mum is even worse. I can't imagine the pain she is suffering.
When we go to see grandma, mum doesn't usually eat until she is back home.

My OH and I made a habit to go on Saturday's at grandma's house and take care of things there. Take care of the flowers, see if everything is in order. Yesterday mum came alone because she needed to solve some paperwork with the utilities.
She was really nervous all the way, going in the house. I was trying to communicate with her, but she was obviously affected she was in the house.

 

[JohnGroban]

We had a good visit today, but I don't know what to do with my mum.

Every time when we visit, grandma is saying to mum she wants to go home, to sit in her corner, at home and doesn't want to disturb anyone, just to sit there. With tears in her eyes.
Mum usually is frozen at that point and doesn't know what to say. I try to intervene, but usually, grandma pays only attention to mum, at that point.

My parents are not like me, they usually freeze in these moments and don't know how to react.

Overall grandma is ok, she had tears in her eyes of joy when she heard they will take her cast off on Thursday. She sleeps well, eats well, and drinks well. Usually, the sundowning effect is about 1-5 minutes during the night, then she goes back to sleep and all is well.
She is different, I agree, but there isn't a huge, huge difference. It frustrates the hell out of me because I have had to fight with the thoughts of taking her back home + convince mum it is for the best.
I am reassuring every time grandma that she still has to stay, but the doctors told us she has to stay more, but it's quite hard as she is not a vegetable and knows what I am telling her and understand me.

I hate the human mind and what it does to people, I really do.