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Some input for someone who just got into this

JohnGroban

Registered User
Oct 28, 2020
178
0
Asking to "go home" seems to happen at some point in almost every person with dementia.

However it started, I have a feeling that it is contact with family that is triggering the behaviour.
When I used to visit mum I have actually witnessed a lady who was happily chatting to staff and other residents when her daughter arrived to visit. As soon as she saw her daughter it was like a switch flicked over. Suddenly she was crying and begging her daughter to take her home, telling her how much she hated being there, that the carers were horrible to her etc etc. As soon as the daughter left, within a couple of minutes it was all forgotten and she was back to laughing and talking to the carers again. It was astonishing - unless I had seen it myself, I dont think I would have believed it.

The thing is that when people with dementia forget, they forget the incident, but they remember the emotions. So, after you and your mum have visited , although she may forget you have been, she will remember the emotions and then when she sees you again the emotions will resurface. Its difficult to know how to handle this, but although this might sound mean, if you dont visit for a couple of weeks it might break this link.

We actually reduced the visits. We only see her two times per month, basically every two Tuesdays.
I suspect we are also the reason.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Oh dear, Im sorry it didnt work.
I suspect that eventually she will stop asking, but its hard in the meantime.

She is so, so, so stubborn when it comes to this. I cannot describe it, like home is a part of her. And not just now, but for over two decades. Even when mum invited her she couldn't wait to go back home.

We are here 6 months now, going home was grandma's main concern, but lately, it has become a really, really big problem and I don't know how to handle it because it really breaks my mum's heart.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
I really, really, really hate this

Our tuesday meeting started really bad. When we arrived there, she refused to talk to me and started crying. She handed me a small bill from the last time I brought her groceries. In the heat of the moment, my OH did not see there was a bill for a previous purchase in the bag we put everything and grandma had the impression it was from what I brought her.
So imagine that. She cried that she doesn't need my pity, that she felt ashamed because other people also seen the bill.

After 15 minutes she settled down, understood then started talking again with me. Found out again she is upset with her roommate, told us that the doctors did not see her at all, things that are missing and you start to wonder, you think you actually don't listen to her and the place has actually some flaws. Then, after that, comes a normal discussion, she calls the nurses by their names, she remembers our talks since she is there, talks about the house, etc, then, you hear her talk about those people that are here now in the hospital.
I swear it does my head in.

I did some digging and found out the home care is actually owned by a celebrity in my country, so I told grandma and her mood changed instantly for the better.

So it ended well, but I swear I am so torn about it. I have moments when I want to take her to see other doctors, but then I hear her say that those people are at the home care and I stop.
Two weeks ago I baked her a cheesecake, tuesday she told me what was wrong with it and she was 100% correct, then she starts talking nonsense.

Just wow.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
We are a bit in a pickle, to say the least.

We found out the place has a new resident, a lady not more than 60 years old. She got herself alone checked in the home care, she is alone, her family lives abroad. Anyway, this resident told grandma that she can go home by asking us not to pay the monthly fee when it's due.

This is what we hear now from grandma non stop, both alone with her, both when mom calls to check on her. Mum askes the nurse how she is and she tells us she is ok, but asks us not to forget what she told us ... :oops:

The last visit we tried something, asked her if she would go home, I want to hire her someone to take care of her. She instantly refused. Mum said then, would you want to come and stay with me. Refused again, but gentle.
Then turned on me and asked me crying: WHAT WOULD YOU DO IF YOU WERE IN MY SHOES AND SOMEONE WOULD DECIDE FOR YOU? WOULD YOU LIKE THAT? ANSWER ME.

Now, we are almost seven months in, here is the status:
Good parts:
- understand that the nights are ok now, she doesn't suffer from sundowning effects according to the nurses.
- she thinks she is in a hospital, knows who everyone is, doesn't confuse us.
- Knows her address, knows her kids, knows her name, remembers our visits, what we bring her,
- No more fits for over a month now, physically fit.
- Remembers details like the visits to the doctors back in October when she was bad.

Bad parts:
- wants non stop to go home
- Non stop judges and speaks badly about her roommate, about other patients and some staff (from time to time)
- accused some of them of stealing her clothing and wore them there or stealing her recovery kit (I bought her for the hand to do exercises with) - here, to be honest, the head nurse was honest and told us they had some small issues with 1-2 nurses and they were sacked.
- goes on and on and on that she was beaten by "those two" and the woman is there with her, or was. That is why she ended up there.

I understand and accept there is somewhat dementia involved, but we really don't know what to do.
There is also another important aspect. We have a head scan, we have a diagnostic by the doctor, but we still don't have the trusteeship I think it's called there. Basically have the right to represent her because of her state.
The process is delaying so much due to bureaucracy. So this is a concern of mine because I wonder if there is a chance she might actually ask to leave and do so (slim to non chances, but still).

An Advice would be much appreciated as the "going home" part is becoming bigger and bigger.
 

lemonbalm

Registered User
May 21, 2018
1,483
0
Hello @JohnGroban

I'd like to help you but I am not 100% sure what you are asking advice on. Are you worried that your grandma will ask to go home and that the care home will say she can do so because you aren't yet legally allowed to make decisions on her behalf? Or are you asking advice about whether or not you should arrange for her to go home with help (help which your grandma would almost definitely not accept) because she seems at present to be reasonably sharp and healthy?

Either way, perhaps a chat with the senior nurse would be the best starting point to get things straight in your head?
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Cheers, @lemonbalm

I am asking how can I ”deflect” the going home part. Became a big issues, it seems she is not moving on from it at all. Nothing works. I considered trying to tell her what actually happened, but I think she might not listen to us.
The staff said that might give her something, but they don't too because they want her to keep her fit.

Are you worried that your grandma will ask to go home and that the care home will say she can do so because you aren't yet legally allowed to make decisions on her behalf?
This is a small issue also, yeah. Asked our lawyer, but she didn't come back with an answer yet. would love an input about this how are things in your part of the world (I reckon they might not be that different).
 

lemonbalm

Registered User
May 21, 2018
1,483
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Oh I see. It's an ongoing issue for many of us with a loved one in a care-home and I think most of us just keep saying the same old thing about "the doctor says you have to stay a bit longer" or similar, which seems the best one if your grandma thinks she is in a hospital. It is very hard, the continual asking to go home, to a better, less confusing place where everything will be alright again. We can't make everything alright again, no matter where they are.

There's a link below about power of attorney in case you are interested. If a person is deemed to have "capacity" here, they can refuse to move into a care home or to accept help at home, which can cause huge problems. Many of us here have loved ones in care-homes who have a "Deprivation of Liberty Safeguards" order, which is a process to ensure that they are not being deprived of their freedom inappropriately. This is often put in place when the person has tried to leave the care-home. It's all rather depressing and I wish I could think of a better way of keeping people with dementia safe. I have possibly not explained it all that well but hopefully given you an idea of how it works here.

 

JohnGroban

Registered User
Oct 28, 2020
178
0
Oh I see. It's an ongoing issue for many of us with a loved one in a care-home and I think most of us just keep saying the same old thing about "the doctor says you have to stay a bit longer" or similar, which seems the best one if your grandma thinks she is in a hospital. It is very hard, the continual asking to go home, to a better, less confusing place where everything will be alright again. We can't make everything alright again, no matter where they are.

There's a link below about power of attorney in case you are interested. If a person is deemed to have "capacity" here, they can refuse to move into a care home or to accept help at home, which can cause huge problems. Many of us here have loved ones in care-homes who have a "Deprivation of Liberty Safeguards" order, which is a process to ensure that they are not being deprived of their freedom inappropriately. This is often put in place when the person has tried to leave the care-home. It's all rather depressing and I wish I could think of a better way of keeping people with dementia safe. I have possibly not explained it all that well but hopefully given you an idea of how it works here.


Thanks!
There are super slim chances she might leave because:
1) she can't physically
2) she will not know how to go home.

But I am worried about how long this keeps on dragging. They didn't do even a social case surveillance to see how she is. The contract is solid, but we signed in her behalf when it all started because she was bad, so yeah, I am worried. We have nothing official we can decide for her.

I trust the staff, they did an amazing job with her and for her, I just don't understand why they are so reluctant about this. I let "the door open" and told them money is not an issue, but we need help with this from them. Stuff to try to make her understand her situation as much as they can.
All in all, grandma works at 70% of her old self, according to them, but Letting a new patient telling her that or what knows else will make their work more difficult, not just for us.
 

ganymede

Registered User
Apr 28, 2021
26
0
Thanks!
There are super slim chances she might leave because:
1) she can't physically
2) she will not know how to go home.

But I am worried about how long this keeps on dragging. They didn't do even a social case surveillance to see how she is. The contract is solid, but we signed in her behalf when it all started because she was bad, so yeah, I am worried. We have nothing official we can decide for her.

I trust the staff, they did an amazing job with her and for her, I just don't understand why they are so reluctant about this. I let "the door open" and told them money is not an issue, but we need help with this from them. Stuff to try to make her understand her situation as much as they can.
All in all, grandma works at 70% of her old self, according to them, but Letting a new patient telling her that or what knows else will make their work more difficult, not just for us.
@JohnGroban there is a section in Oliver James' book "Contented Dementia" that talks about how to approach converting distress/stressful emotions into feelings of security. I think it's called the "red to green loop". I haven't tried this yet with my Mum so I can't tell you it works, but it might be worth a try. Hope this helps you.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
@JohnGroban there is a section in Oliver James' book "Contented Dementia" that talks about how to approach converting distress/stressful emotions into feelings of security. I think it's called the "red to green loop". I haven't tried this yet with my Mum so I can't tell you it works, but it might be worth a try. Hope this helps you.
Thank you! Will look into that, never heard of the book.

I cannot complain about our case. I think her knowing who we are and talking normally is our biggest win. For that, I am really grateful.
But her "going home", in our case, is 100% because of how stubborn she is, not because of dementia. How stubborn she always was and refusing to understand that at 95 you simply can't live alone anymore, even if you are still walking alone, wash alone and so on.
 

Norfolk Cherry

Registered User
Feb 17, 2018
314
0
Once I read on here a tip about what to say when they "want to go home" It was along the lines of the roof is leaking and needs repairs, or the boiler needs replacing. You just keep bringing up more reasons like that.But the best one is that the doctors are still reviewing the case, we will know soon.

Try not to let yourself see your grandma as if it were YOU AS YOU ARE NOW in the same situation. Her world is completely different and changes from one moment to the next. I imagine like in a dream.

My mum was dreadfully distressed when she went in at first, she had to be given a lot of medication to "settle her" But she did in the end find a way of peacefully living there, as much as is possible with dementia. You are doing the right thing in her best interests. I hope you are all OK.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Once I read on here a tip about what to say when they "want to go home" It was along the lines of the roof is leaking and needs repairs, or the boiler needs replacing. You just keep bringing up more reasons like that.But the best one is that the doctors are still reviewing the case, we will know soon.

Try not to let yourself see your grandma as if it were YOU AS YOU ARE NOW in the same situation. Her world is completely different and changes from one moment to the next. I imagine like in a dream.

My mum was dreadfully distressed when she went in at first, she had to be given a lot of medication to "settle her" But she did in the end find a way of peacefully living there, as much as is possible with dementia. You are doing the right thing in her best interests. I hope you are all OK.

Thanks you for your kind words.
I will continue to do so as it seems there is nothing else I can do. I just hope that going home doesn't become more of a problem than it actually is.

What makes it hard is that she seem so lucid when she wants home, knows the address, everything.
 

jennifer1967

Registered User
Mar 15, 2020
4,425
0
Southampton
there was a person i knew who wanted to go home to tea and see his wife.they quoted his address as well. after speaking to relatives, the address quoted was an old address so they didnt know where home was but what they did after work they went home to partner and tea. it was at least 20 yrs out of date. i said anything like delayed in traffic, emergency and it did work to distract and turn back to tea and food. it maybe they were hungry as it was near tea-time and wanted their tea. when partner visited, they didnt know them.
 

Scarlet Lady

New member
Apr 6, 2021
7
0
Hi, @JohnGroban. I’ve read all your posts regarding your grandmother with great interest. It’s certainly been a rollercoaster for you and your family and your granny is very lucky to have such a loving and very caring grandson.
She‘s obviously in a home that is meeting her needs, despite ups and downs in her condition and day to day responses. As others have said, this is part and parcel of dementia, no matter how hard it is for families and loved ones to deal with, as well as the PWD themselves. Although my PWD is not yet in a care home, I have experience of loved ones who have been. At the risk of sounding patronising, brain damaged adults (and that is exactly what dementia does) can behave very much like four year olds in a playground. Your grandmother and her room mate may well be squabbling, but neither wants to move to separate rooms. This is part and parcel of old age and relationships that have been formed due to mental processes that most of us can’t understand. As Norfolk Cherry so rightly pointed out, you can’t really project your own emotions, worries and fears onto your grandmother. Her reality is completely different to yours.
There are clearly good days and bad, and I understand that her obsession about ‘going home’ is very upsetting. But that’s what it is: an obsession and in time it’ll pass and she’ll move on to a new obsession. (That seems to be the way of it 🤦‍♀️)
The whole point is, you can do little more than you’ve already done to make her life better and you need to accept that. Your grandmother is a very old lady who has lived a full and interesting life. No one would want to visit dementia on anyone, but the longer we keep people physically alive because of advances in medication, the greater is the likelihood that most of us at some point will be dealing with this epidemic in mental illness.
Which is now where I dip my toes into what may be a sensitive subject and I apologise in advance for any offence, it’s truly not intended. You’ve mentioned that your father has been diagnosed with heart problems and that’s been an additional worry for your family. Your dad is my age, although my son is a little older than you. Although I think I’m reasonably fit, I’m aware that this could be me. You’ve said that your mum doesn’t really know how to deal with your granny, but she must be so terribly worried about your dad. It’s not surprising that she’s a bit paralysed in dealing with things.
I wouldn’t presume to know what relationship you have with your parents, but may I ever so gently suggest that perhaps you should be focusing more attention on your parents than your grandmother? They are in a position to benefit more from it. Again, apologies if this is inappropriate and I wish you all the best going forward.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Hi, @JohnGroban. I’ve read all your posts regarding your grandmother with great interest. It’s certainly been a rollercoaster for you and your family and your granny is very lucky to have such a loving and very caring grandson.
She‘s obviously in a home that is meeting her needs, despite ups and downs in her condition and day to day responses. As others have said, this is part and parcel of dementia, no matter how hard it is for families and loved ones to deal with, as well as the PWD themselves. Although my PWD is not yet in a care home, I have experience of loved ones who have been. At the risk of sounding patronising, brain damaged adults (and that is exactly what dementia does) can behave very much like four year olds in a playground. Your grandmother and her room mate may well be squabbling, but neither wants to move to separate rooms. This is part and parcel of old age and relationships that have been formed due to mental processes that most of us can’t understand. As Norfolk Cherry so rightly pointed out, you can’t really project your own emotions, worries and fears onto your grandmother. Her reality is completely different to yours.
There are clearly good days and bad, and I understand that her obsession about ‘going home’ is very upsetting. But that’s what it is: an obsession and in time it’ll pass and she’ll move on to a new obsession. (That seems to be the way of it 🤦‍♀️)
The whole point is, you can do little more than you’ve already done to make her life better and you need to accept that. Your grandmother is a very old lady who has lived a full and interesting life. No one would want to visit dementia on anyone, but the longer we keep people physically alive because of advances in medication, the greater is the likelihood that most of us at some point will be dealing with this epidemic in mental illness.
Which is now where I dip my toes into what may be a sensitive subject and I apologise in advance for any offence, it’s truly not intended. You’ve mentioned that your father has been diagnosed with heart problems and that’s been an additional worry for your family. Your dad is my age, although my son is a little older than you. Although I think I’m reasonably fit, I’m aware that this could be me. You’ve said that your mum doesn’t really know how to deal with your granny, but she must be so terribly worried about your dad. It’s not surprising that she’s a bit paralysed in dealing with things.
I wouldn’t presume to know what relationship you have with your parents, but may I ever so gently suggest that perhaps you should be focusing more attention on your parents than your grandmother? They are in a position to benefit more from it. Again, apologies if this is inappropriate and I wish you all the best going forward.
Thank you so much Scarlet for your input and kind words. A big thank you!

I think you summarized it all close to perfection. I think my biggest fear in all of this is that I somewhat made a mistake, that she had delirium and not dementia, that I couldn't find a way to take her home and get her the care she needs there. I know, deep down, that I did/done everything I could, but still can't help to feel those things. Because covid came and I couldn't take her to more doctors, maybe find a way, etc.

I have a great relationship with my parents, always had, didn't see always eye to eye, but we speak two times per day, always did, visits, etc, so yeah, somewhat my focus is on them, but I keep on going back to grandma because she was there in the best part of my life, until I was 15.

I focus a lot on them, what happened that night was a shock for them. Was for me, and I consider myself solid mentally, imagine them and witnessing all of that. We grew somewhat since it happened, we moved on because we realized there is nothing more we can do, but still some things are really hard to handle and accept and visits, and I can't believe I am saying this, are becoming a burden for my heart and I think mum's also.
It's great to see grandma 70-80% the normal self, but the rest 20% is like a hammer in the head.

I have to move on. We have to move on. It's the only way.
I just hope it will be over soon. And I hate for feeling this, but it is for the best.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Finally had a good visit again today.
Buzzing because she got the covid vaccine on Saturday, Pfizer, no problems so far.

Of course, she said about home and talked about how bad is her roommate, but all in all good.
She said something that caught my attention, might be nothing, but she said she doesn't want to move from the room where she is because her roommate, as bad as she is, she keeps people out of their room, people that are not the staff. So I think those "people" are actually the same she saw, the ones that "hurt" her that night.
 

lemonbalm

Registered User
May 21, 2018
1,483
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Finally had a good visit again today.
Buzzing because she got the covid vaccine on Saturday, Pfizer, no problems so far.

Of course, she said about home and talked about how bad is her roommate, but all in all good.
She said something that caught my attention, might be nothing, but she said she doesn't want to move from the room where she is because her roommate, as bad as she is, she keeps people out of their room, people that are not the staff. So I think those "people" are actually the same she saw, the ones that "hurt" her that night.

Hello John

That all sounds good. I'm glad that your grandma seems to feel safe with her room mate.

I hope your Dad is doing ok.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
Hello John

That all sounds good. I'm glad that your grandma seems to feel safe with her room mate.

I hope your Dad is doing ok.

Cheers!
Dad is good, very good considering. The last visit solved those issues, so now we are waiting patiently for the surgery in July. Deep down hoping the results will show that there is no need and everything is solved.

I am just gutted and annoyed, still, on the previous doctors and their incompetence. 3 months and a half of going in and out of the hospital because the doctors were so poor.
 

JohnGroban

Registered User
Oct 28, 2020
178
0
The past few weeks were calm and decent. We told her the vaccine story and the fact she needs to stay and wait for the second jab, then a third one and she is calm.
The only issue is the constant argument with her roommate. Did anyone else had this problem?

She moans about her roommate but refuses to be moved with someone else. The usual, she steals my stuff, etc.

What I found interesting is that she asked for a notebook and there she started writing things about her like her age, name, address, etc, things she doesn't want to forget.