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Some input for someone who just got into this

JohnGroban

Registered User
Oct 28, 2020
156
0
Hello @JohnGroban . You will no doubt still be smarting from your bad visit. I don't think that anyone trying to explain your grandma's situation to her will do any good to be honest. It is, I fear, more likely to cause her upset and agitation. By all means, speak to the head nurse and see what she suggests is a good approach for your grandma. She will have seen it all before, will know her quite well by now, and may have some suggestions on how to settle her.

A day at a time John, a day at a time. Do you know how your grandma has been since you saw her?

Yeah, according to the head nurse, she was ok, she did not mention wanting to go home.
Actually, they have a good relationship now, grandma likes her a lot and the feeling is mutual from the head nurse. She invited her to visit, as you might have guessed.

I feel terrible because her begging is hard to swallow. When she looks into my eyes, with tears and tells me and my mum if we do not take her home soon we will do it in a coffin.

And I feel bad because deep down I want the get that call from the nursing home to tell me it's all over.
 

lemonbalm

Registered User
May 21, 2018
1,367
0
It's good to hear that your grandma gets along with the staff so well. I know it's very hard. My mum once looked me in the eye after a really bad visit and said "I'm asking you not to do this". That will be burned into my memory for ever. Mum, of course, will have no recollection of it at all.

Your protective shell or armour hasn't yet developed fully - and even when it does still there will be little arrows that will get through.

Don't feel bad about wanting it to be over deep down. I think we all feel that sometimes. You'll feel different when you have the next good visit. You recently said how very glad you were to have your grandma in your life. She will feel just the same about you @JohnGroban
 

JohnGroban

Registered User
Oct 28, 2020
156
0
It's good to hear that your grandma gets along with the staff so well. I know it's very hard. My mum once looked me in the eye after a really bad visit and said "I'm asking you not to do this". That will be burned into my memory for ever. Mum, of course, will have no recollection of it at all.

Your protective shell or armour hasn't yet developed fully - and even when it does still there will be little arrows that will get through.

Don't feel bad about wanting it to be over deep down. I think we all feel that sometimes. You'll feel different when you have the next good visit. You recently said how very glad you were to have your grandma in your life. She will feel just the same about you @JohnGroban

Thank you.
Really, thank you.

I am just worried about all of this.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,312
0
Nottinghamshire
I'd still stick with " The doctor says...". My dad told me he thought his doctor was an idiot but at least it took the blame off me!

I really don't think your grandma will understand that she's ill.
 
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Spamar

Registered User
Oct 5, 2013
7,578
0
Suffolk
Couple of things you said made me think you were
suing for her care. If you are in this country, she should be paying if her assets, personal savings and house if any should be covering the cost, after that the state pays.
sorry if I’ve got the wrong end of the stick!
 

canary

Registered User
Feb 25, 2014
14,888
0
South coast
Please dont let one bad visit derail you.
The head nurse has said that she hasnt mentioned going home again since your visit. It sounds like she saved up her complaints for you (Ive seen it so many times while I was visiting mum pre-covid) and now she has probably forgotten the whole episode. I wouldnt do things to keep reminding her.

Next time you visit everything may be all hunky dory again. Its just the way it is with dementia. With time she will settle more and the demands to go home will become less.
 

JohnGroban

Registered User
Oct 28, 2020
156
0
Please dont let one bad visit derail you.
The head nurse has said that she hasnt mentioned going home again since your visit. It sounds like she saved up her complaints for you (Ive seen it so many times while I was visiting mum pre-covid) and now she has probably forgotten the whole episode. I wouldnt do things to keep reminding her.

Next time you visit everything may be all hunky dory again. Its just the way it is with dementia. With time she will settle more and the demands to go home will become less.
It just scares me that her illness is like this, with many signs of normality. Knowing things like names, the name of the head nurse, things since she arrived there. She has more good things, than bad when we see her, but I have no idea how she acts during the Sundowning effect, nonstop during the day.
She told us those things when only the two of us were around, when the nurse came she stopped, showing signs like she knew what she was doing.
That is why I feel like I am in a revolving door.
We have the doctor diagnostic, we have the CT that confirms her illness, we have an opinion from another neurologist, plus the info from the head nurse as they look at her.
3 different opinions and I am still afraid what am I doing is wrong.


Couple of things you said made me think you were
suing for her care. If you are in this country, she should be paying if her assets, personal savings and house if any should be covering the cost, after that the state pays.
sorry if I’ve got the wrong end of the stick!

No, I am not from UK.
Basically, we are trying to get a decision from the local court to get the rights to represent her, due to her illness. I spoke with my lawyer and she made a file and we are waiting for the verdict. But we are doing this without grandma actually trying to meet anyone from the state, just based on medical files. We are trying to avoid another shock.
Her pension doesn't cover even 25 % of the monthly fee.

We need this just to be able to represent her, for example, big clinics refused to make her CT without her consent, due to GDP. There was an option to take her rights, but we clearly denied it + there is an option to apply to get some help from the state, but in order to do that, you need to declare her mentally ill. Another thing we refuse because ... I don't know why, but we just couldn't. It felt wrong.
We are just trying to represent her when it's needed without taking her and transporting her in the conditions the world is now
 
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canary

Registered User
Feb 25, 2014
14,888
0
South coast
It just scares me that her illness is like this, with many signs of normality.
The thing is that with dementia they dont decline uniformly. If they did it would probably be easier. What happens, though, is that its like a jigsaw that has been completed and then bits of the jig saw are taken away - a bit here, a couple of bits there, but a lot of the picture is still intact. The missing bits will spread and the gaps will become more obvious, but even so, there will still be pieces that are intact right up to the end.

The other thing that happens is that their ability fluctuates, so they will have "good" days and "bad" days - rather like a dying light bulb that is flashing on and off before it finally goes out. It is it very easy to think, on a good day, that there must be some mistake and they are not really that bad, or conversely, on a bad day think that they always feel like that.

Im afraid that you cannot trust what your grandma says to you. It may be confabulation, or she may change her mind on a sixpence (a very small coin. A dime?) so that what she says to you is completely different to what she says to someone else - and each time she is certain that it is the truth.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,343
0
High Peak
As an example, when I visited my mum in her care home she would say things like, 'The girls are all lovely - they can';t do enough for you. I've never had so many biscuits! But I can't stand the people who work here. They never come and I haven't had any food all week, not even a cup of tea.' She remained very articulate until near the end and could be very convincing. I'm sure she saved up all her complaints for me! Sometimes I'd get there and she'd just rant at me for half an hour (or more!). Then she'd suddenly stop and say, 'So did you have a nice Christmas?'

I found the problem in trying to discern 'the truth' was not when she told me 'the place burned down in the night', but when she said something vaguely/possibly plausible like, 'one of the girls pinches me,' or, 'they told me to keep quiet or I'll be punished'. Stuff like that is really worrying!

It's very hard. It's a pity you can't get your mum to join in with the distraction techniques. It would really help if she could get 'onside' with your grandmother. Perhaps if she agreed she should go home and said she was making arrangements, getting work done on the house, getting permission from the medics/courts, etc, it would help and she would no longer be seen as 'the enemy'.
 

JohnGroban

Registered User
Oct 28, 2020
156
0
The thing is that with dementia they dont decline uniformly. If they did it would probably be easier. What happens, though, is that its like a jigsaw that has been completed and then bits of the jig saw are taken away - a bit here, a couple of bits there, but a lot of the picture is still intact. The missing bits will spread and the gaps will become more obvious, but even so, there will still be pieces that are intact right up to the end.

The other thing that happens is that their ability fluctuates, so they will have "good" days and "bad" days - rather like a dying light bulb that is flashing on and off before it finally goes out. It is it very easy to think, on a good day, that there must be some mistake and they are not really that bad, or conversely, on a bad day think that they always feel like that.

Im afraid that you cannot trust what your grandma says to you. It may be confabulation, or she may change her mind on a sixpence (a very small coin. A dime?) so that what she says to you is completely different to what she says to someone else - and each time she is certain that it is the truth.

I put her refusal and wanting to go home is on her stubbornness that she "knows" best.
She always was this way, that is why at the moment I cannot take her home and hire home nurses. Because she refused to let us fix her home problems in time.
But also her stubbornness is what makes me wonder if I am actually doing the right thing. Her stubbornness is the same as ever.
 

JohnGroban

Registered User
Oct 28, 2020
156
0
As an example, when I visited my mum in her care home she would say things like, 'The girls are all lovely - they can';t do enough for you. I've never had so many biscuits! But I can't stand the people who work here. They never come and I haven't had any food all week, not even a cup of tea.' She remained very articulate until near the end and could be very convincing. I'm sure she saved up all her complaints for me! Sometimes I'd get there and she'd just rant at me for half an hour (or more!). Then she'd suddenly stop and say, 'So did you have a nice Christmas?'

I found the problem in trying to discern 'the truth' was not when she told me 'the place burned down in the night', but when she said something vaguely/possibly plausible like, 'one of the girls pinches me,' or, 'they told me to keep quiet or I'll be punished'. Stuff like that is really worrying!

It's very hard. It's a pity you can't get your mum to join in with the distraction techniques. It would really help if she could get 'onside' with your grandmother. Perhaps if she agreed she should go home and said she was making arrangements, getting work done on the house, getting permission from the medics/courts, etc, it would help and she would no longer be seen as 'the enemy'.

The thing mum is trying, but when grandma starts crying, her heart melts.

I am super lucky that the staff here is golden. I do not expect any worrying things from grandma in that way, even if she is saying some stuff, of course, like a nurse did not move when she was walking or she thinks another put the clothes in a wrong way.
But then I look at her physically and she is better than I saw her in years. She put on some weight, she looks refreshed, she is congratulating the food, etc. The conditions are fantastic. I was really, really, lucky.
 

silkiest

Registered User
Feb 9, 2017
265
0
Hi @JohnGroban, I had an interesting discussion with care home staff last year. A manager told me that most of their residents initially appear to improve physically and sometimes mentally. This is because they are getting regular nutritious meals and are well hydrated, something which is not always possible at home. It must cause some guilt for the family if they initially improve, unfortunately this amount of care is not possible at home
 

JohnGroban

Registered User
Oct 28, 2020
156
0
Hi @JohnGroban, I had an interesting discussion with care home staff last year. A manager told me that most of their residents initially appear to improve physically and sometimes mentally. This is because they are getting regular nutritious meals and are well hydrated, something which is not always possible at home. It must cause some guilt for the family if they initially improve, unfortunately this amount of care is not possible at home

Good to hear that. To be honest is such a ride.
I think all happening in just 10 hours must be really what I still can't get over and why I have these feelings deep inside.

If there were clear signs before all of this I think It would have been better.
 

Tekguy

New member
Dec 28, 2020
3
0
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...
What kind replies to original poster
 

JohnGroban

Registered User
Oct 28, 2020
156
0
Went earlier to pay the monthly "rent" and talked with the head nurse about our situation.

First of all, grandma is good, as usual, the staff is taking care of her. I took her some biscuits, last week's newspapers and a note from my OH. I did no see her, as we discussed.

I spoke with the nurse about what she can recommend us to do, as we can't take her home and she was reluctant at first, but said she can speak with the doctor and ask if we can hire a psychologist to come and talk to her once or two times per month, to speak with her about all of this and calm her down.

She said the staff is reluctant to talk to the patients because they had multiple examples when after I while they got blamed because "they lied".

Also asked her straight forward if I will do anything better at home and take her, with il work and she said no. No because she started to know how grandma is and that she will never allow anyone in her home.
The response did not help much.

So now I will wait and see what she will tell me after she talks with the doctor, see the costs and hopefully, some results.
 

canary

Registered User
Feb 25, 2014
14,888
0
South coast
I spoke with the nurse about what she can recommend us to do, as we can't take her home and she was reluctant at first, but said she can speak with the doctor and ask if we can hire a psychologist to come and talk to her once or two times per month, to speak with her about all of this and calm her down.
I am not actually surprised that she was reluctant. I cant honestly see that plan working.
1 - Logic and reasoning dont work with dementia, so its almost impossible to get someone with dementia to change their mind over something.
2 - Even if the psychologist does get her to agree in the moment, she is extremely likely to change her mind back again
3 - She will not retain the things that they have talked about and after a few days may well not even remember that he came.
4 - People with dementia forget facts and experiences, but they remember the emotions that went with things that happened. Your mum will probably forget that the psychologist came to talk to her, but is highly likely to remember the feeling of wanting to go home and this my well re-enforce the obsession.

I honestly think that getting someone in to talk to her about it will just make matters worse. Much better to ignore it and eventually the obsession will fade. I think this is one of those things that you cannot fix.