Margherita's diary

[margherita]

Sorry, my stupid pad cut me off. We got a diagnosis of AZ in 2014, and​ steadily worse since.
I would urge you to think seriously about returning to Milan. You are more likely to find some sort of help there to get you through these initial stages, and get prepared for the future. You should also start looking at the possibility of indenità di accompagnamento (carers allowance), as this is the only financial help you will get. It is not means tested, and fairly generous. As you well know, but people in the UK don't, responsibility for sick relatives lies entirely with family, not the State, as per article 438 of the civil code. Having said that, there are some voluntary organisations that sometimes help, though as you have already pointed out, Alzheimer's is still very much a hidden disease. Have​ to go now because Mrs. malomm is screaming for attention. And you already know what she's calling me

Hi Maomm,
at the moment I can't force my husband to move out of his house, which he loves so much.
Here he can spend hours doing the gardening and listening to his adored classical music without disturbing the whole neighbourhood.
What would he do if we were in Milan?

He can still make decisions, despite all his problems.
Maybe when things get worse..
His situation is not so bad yet to enable us to ask for "indennità di accompagnamento" ( carers allowance)
We are in a period of transition..
I can but wait.

Where is your wife from? My father was from Palemo, Sicily

 

[malomm]

Hi Maomm,
at the moment I can't force my husband to move out of his house, which he loves so much.
Here he can spend hours doing the gardening and listening to his adored classical music without disturbing the whole neighbourhood.
What would he do if we were in Milan?

He can still make decisions, despite all his problems.
Maybe when things get worse..
His situation is not so bad yet to enable us to ask for "indennità di accompagnamento" ( carers allowance)
We are in a period of transition..
I can but wait.

Where is your wife from? My father was from Palemo, Sicily

Hello again Margherita, my wife is from the Province of Naples, Penisola Sorrentina. Lovely people, beautiful scenery, but disastrous public health and social services..
Another gilded cage but with a lot of rust showing through.
Pleased to hear that you and your husband are coping with the situation at the moment, but do keep planning for the future.
Keep smiling,
Malomm.

(and pathetic 4G coverage!)

 

[margherita]

Hello again Margherita, my wife is from the Province of Naples, Penisola Sorrentina. Lovely people, beautiful scenery, but disastrous public health and social services..

Another gilded cage but with a lot of rust showing through.

Pleased to hear that you and your husband are coping with the situation at the moment, but do keep planning for the future.
Keep smiling,

I haven't been to Naples and Penisola Sorrentina for 20years. Too crowded, too noisy,too expensive.

You suggest I should keep planning for the future
It is one of the things I would like most, but I do not know how to do.
I am aware that things will get worse , but..how ?when?
We have little or no power over the future, but mine seems to be particularly obscure

 

[margherita]

Our family doctor doesn't want to prescribe the PET scan the neurologist had asked for.
He maintains it is useless.

The truth is that the Italian National Health Service is trying to reduce costs (at the expense of the patients and advantage of corrupt managers and politicians), threateng to charge the family doctor with the cost of prescriptions

PET is available in few hospitals with long waiting lists and even if we decided to pay for it, we couldn't because there is no private access to it

In your experience is PET essential for a diagnosis and therapy?

 

[margherita]

Yesterday I had an argument with my husband over...cherry jam.
The day before yesterday he had picked cherries from our trees in the garden and I had made a lot of it.
Since there were cherries left to pick, he had asked me if I wanted to make more jam. No, I did not.
So he replied he would pick them and make the jam himself.
My answer had been, as usual, "do as you please" as I have realized that it is better not to contradict him.
Well,after he had brought the cherries into the kitchen he wanted me to make the jam.
When I refused he started swearing and shouting he could not bear me and hated me..
He was holding a small hoe in his hand (because he was going to do some gardening) and for a moment I was afraid he would hit me.

 

[LynneMcV]

Hi there,

When my husband was diagnosed five years ago he had an MRI scan which gave enough information to confirm that he had dementia. It was always verbally referred to as Alzheimer's but in his written notes it was referred to as a non-specific dementia. The fact that it was non specific did not stop him being issued with medication to slow down the progress of the disease as it was assumed to be a dementia for which the medication could be useful (i.e. not vascular).

About three years after diagnosis another consultant came on to the scene and saw that my husband's type of dementia had never actually been fully categorised. He offered a PET to see if he could get a more accurate diagnosis - it would make no difference to the treatment itself, it was just about categorising the type of dementia.

The results showed that the progress was typical of Alzheimer's. It made no difference to his treatment, his written notes continued to refer to a non specific dementia. It is only within the past year that the medical profession have started putting in writing that his type of dementia is Alzheimer's but, to be honest, it wouldn't surprise me if they change the type of dementia further down the line.

If your husband is already receiving medication to slow the progress of his dementia down I wouldn't worry much about whether or not there is a PET scan carried out.

 

[margherita]

Welcome Margherita, I am so sorry you are in such a difficult situation, but it's good you have found Talking Point because you will get lots of advice and support.

I went to Piedmont many years ago on holiday and thought it was charming and beautiful but I can understand how isolated you feel.

Hope the ideas suggested in this thread are helpful for you, especially malomm's who understands the systems in Italy.
Very best wishes
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Thank you Esmeralda!
We actually live in a beautiful but isolated place.
I don't mind being lonely, but living in this place with my husband is often unbearable.
If I could be really alone with my two dogs (rescued from an awful municipal pound in the South)I wouldn't be so tired and dissatisfied with my life

 

[LynneMcV]

Yesterday I had an argument with my husband over...cherry jam.
The day before yesterday he had picked cherries from our trees in the garden and I had made a lot of it.
Since there were cherries left to pick, he had asked me if I wanted to make more jam. No, I did not.
So he replied he would pick them and make the jam himself.
My answer had been, as usual, "do as you please" as I have realized that it is better not to contradict him.
Well,after he had brought the cherries into the kitchen he wanted me to make the jam.
When I refused he started swearing and shouting he could not bear me and hated me..
He was holding a small hoe in his hand (because he was going to do some gardening) and for a moment I was afraid he would hit me.

These mood swings can be very scary at times. Is it possible for you to have access to a room where you can lock yourself away safely until the anger passes? After my husband had a violent episode last year (the one and only time of physical violence in his 5 years since being diagnosed with dementia) I fitted locks to the bedroom doors so that I, and our grown-up son and daughter who live with us, could stay safe if it happened again.

Also make sure you have access to a phone in case you need to call for help.

 

[margherita]

These mood swings can be very scary at times. Is it possible for you to have access to a room where you can lock yourself away safely until the anger passes? After my husband had a violent episode last year (the one and only time of physical violence in his 5 years since being diagnosed with dementia) I fitted locks to the bedroom doors so that I, and our grown-up son and daughter who live with us, could stay safe if it happened again.

Also make sure you have access to a phone in case you need to call for help.

Lynne, thanks for your reply which sounded to me like a warning, besides being wise advice.
I needed it. I'm afraid I tend to underestimate the chance of a violent episode
The first thought when I read your words was "it is not my situation" "that won't happen to me..not yet ,at least"
It is only what I hope, not what might actually happen

 

[margherita]

If your husband is already receiving medication to slow the progress of his dementia down I wouldn't worry much about whether or not there is a PET scan carried out.

Yes, he is. He takes Ebixa, four puffs a day.
I don't think it helps with slowing the progress of his dementia, but I can't know what the situation would be like if he didn't take it.

 

[canary]

Your husband sounds so much like mine. I wonder whether your neurologist is thinking that he has Frontotemperal dementia(FTD) and this is why he wants a PET scan? As Lynn explained a PET scan is usually used to tell the difference between Alzheimers and FTD. Whichever he has doesnt really make a lot of difference, but it does mean that you have to watch any drugs that he takes. Some drugs commonly given for Alzheimers (particularly donepezil) can increase aggression in FTD.

Saying "no" to my husband makes him very angry. You are wise to say whatever will keep him happy, but sometimes you have to refuse his wants. A tip that I picked up from the FTD Support Forum is to say "yes" followed by saying no, but without using the word "no" eg - when asked to make cherry jam: "Yes. I am making coffee now - would you like some?" or "Yes, I will put them in the freezer so I can make it later." Its not easy to do, especially when you are not prepared, and I dont know whether this would translate into Italian, but it is something that I have found helpful.

 

[margherita]

Your husband sounds so much like mine. I wonder whether your neurologist is thinking that he has Frontotemperal dementia(FTD) and this is why he wants a PET scan? As Lynn explained a PET scan is usually used to tell the difference between Alzheimers and FTD. Whichever he has doesnt really make a lot of difference, but it does mean that you have to watch any drugs that he takes. Some drugs commonly given for Alzheimers (particularly donepezil) can increase aggression in FTD.

Saying "no" to my husband makes him very angry. You are wise to say whatever will keep him happy, but sometimes you have to refuse his wants. A tip that I picked up from the FTD Support Forum is to say "yes" followed by saying no, but without using the word "no" eg - when asked to make cherry jam: "Yes. I am making coffee now - would you like some?" or "Yes, I will put them in the freezer so I can make it later." Its not easy to do, especially when you are not prepared, and I dont know whether this would translate into Italian, but it is something that I have found helpful.

The answers

Good tip, Canary!
Perfect in Italian, too
You suggest I put off the refusal to do what he wants .
It is something I must learn
My husband has always been impatient and intolerant of people and events that were different from what he would have liked
My old family doctor used to say that old age and illness neither add new behaviours nor take them away away. They only make things worse.

 

[malomm]

Throwing a wobbly

Margherita, you do need to start thinking of yourself. I've been where you are now, and looking back, can see that all my concerns for the welfare of Mrs m overided my own needs. It didn't, and doesn't​ make a blind bit of difference to the horrible progression of the disease that takes your loved one away from you; and you from them. We're at the stage where any attempt to control household kleptomania, hoarding, interfering with dangerous fittings, or contradicting in anyway, leads to a violent outburst of physical and verbal aggression. This has been kept under partial control by 50 mg. of
Quetipiena a day. However anything that isn't nailed down or locked away is fair game.
Margherita, the last thing you should do is contradict your husband. It might be against the grain, but find some way of smoothing over or agreeing, or moving to another room.I hope you will have already taken on board the excellent advice from others re locks, phones, and. 'escape routes'.
And this brings me to our common Italian problem​.A year ago our 'geriatric consultant' saw Mrs m, exchanged a few words, and rubber-stamped his diagnosis of moderate dementia and prescription of aricept and quetipiana. We should have returned in Oct '16, Mrs m flatly refused to get in the car, result missed appointment, new appointment to which I went. on my own to simply rubber-stamp everything again. So now time to go again to renew everything, last Wed. Hey presto! No longer geriatric consultant, but Alzheimer Evaluation Unit.
Loads of new forms to fill in and sign. I have to forge Mrs m's signature​, because of course she is no longer capable of writing out her own signature precisely as it is on her ID card issued 10 years ago. Mrs m has been given the run of the unit, so has bagged a carrier full of deadly looking medication. As we try to get it from her, some idiot opens an outer door, and she decides to go home to her mother. Attempts​ to get her back inside are met with a violent outburst of physical aggression both against myself and the consultant.
Best thing that could have happened. No need for explanation or justification. It was all there in glorious 3D technicolour. Quetipiana immediately increased to 200 mg daily despite the best efforts of AEU to restrict prescriptions. It did take 4 days for our pharmacy to get the stuff, and it took me all another story to actually find Mrs m. again after she ran off. We did however get home in time to make lunch.
Take care Margherita, and by fair means or foul, push for proper diagnosis and treatment.
Keep smiling,
Malomm.

 

[margherita]

Margherita, you do need to start thinking of yourself. I've been where you are now, and looking back, can see that all my concerns for the welfare of Mrs m overided my own needs. It didn't, and doesn't​ make a blind bit of difference to the horrible progression of the disease that takes your loved one away from you; and you from them. We're at the stage where any attempt to control household kleptomania, hoarding, interfering with dangerous fittings, or contradicting in anyway, leads to a violent outburst of physical and verbal aggression. This has been kept under partial control by 50 mg. of
Quetipiena a day. However anything that isn't nailed down or locked away is fair game.
Margherita, the last thing you should do is contradict your husband. It might be against the grain, but find some way of smoothing over or agreeing, or moving to another room.I hope you will have already taken on board the excellent advice from others re locks, phones, and. 'escape routes'.
And this brings me to our common Italian problem​.A year ago our 'geriatric consultant' saw Mrs m, exchanged a few words, and rubber-stamped his diagnosis of moderate dementia and prescription of aricept and quetipiana. We should have returned in Oct '16, Mrs m flatly refused to get in the car, result missed appointment, new appointment to which I went. on my own to simply rubber-stamp everything again. So now time to go again to renew everything, last Wed. Hey presto! No longer geriatric consultant, but Alzheimer Evaluation Unit.
Loads of new forms to fill in and sign. I have to forge Mrs m's signature​, because of course she is no longer capable of writing out her own signature precisely as it is on her ID card issued 10 years ago. Mrs m has been given the run of the unit, so has bagged a carrier full of deadly looking medication. As we try to get it from her, some idiot opens an outer door, and she decides to go home to her mother. Attempts​ to get her back inside are met with a violent outburst of physical aggression both against myself and the consultant.
Best thing that could have happened. No need for explanation or justification. It was all there in glorious 3D technicolour. Quetipiana immediately increased to 200 mg daily despite the best efforts of AEU to restrict prescriptions. It did take 4 days for our pharmacy to get the stuff, and it took me all another story to actually find Mrs m. again after she ran off. We did however get home in time to make lunch.
Take care Margherita, and by fair means or foul, push for proper diagnosis and treatment.
Keep smiling,
Malomm.

You have portrayed the hell in which you live and where I will be living .
I admire you and the way you can cope with the situation.
You seem not to have lost courage and even a touch of sense of humor

I will think of myself, as you suggest, though I don't know exacly what to do.
I have convinced my husband to go to a consultant not belonging to the useless Alzheimer Evaluation Unit, which here doesn't work

I wish you a quiet night!

 

[Malalie]

Hi Margehrita,

I'm so glad that you have discovered this forum and received such good advice.. It sounds like you are 'walking on eggshells' - thats a good English idiom meaning 'being very careful not to upset somebody"

The advice to make sure that you have a safe , lockable place to escape to, and a phone with you is very important.

I don't know what your mental health system is there so it's very difficult for me to advise about anything to do with your husband apart from the link that Izzy gave you about compassionate communication. It does work (but it does still leave you angry I know....)

Can you drive, and is your husband OK on his own for a while? Would it be worth trying to spend a little more time out of the house - trying to develop a few interests - anything really in order for you to speak with other people, possibly make some local acquaintances

Dog walking is good, I know, for chatting to others - could you drive off with your dogs and go to some more popular dog walking areas? Sounds silly, I know, but you do sound terribly isolated, and I suppose that what I am saying is if you had some local friends, the burden might not seem so great.

You have friends here anyway, so keep posting. Look after yourself. I'm glad you found us.

 

[margherita]

Hi Margehrita,

I'm so glad that you have discovered this forum and received such good advice.. It sounds like you are 'walking on eggshells' - thats a good English idiom meaning 'being very careful not to upset somebody"

The advice to make sure that you have a safe , lockable place to escape to, and a phone with you is very important.

I don't know what your mental health system is there so it's very difficult for me to advise about anything to do with your husband apart from the link that Izzy gave you about compassionate communication. It does work (but it does still leave you angry I know....)

Can you drive, and is your husband OK on his own for a while? Would it be worth trying to spend a little more time out of the house - trying to develop a few interests - anything really in order for you to speak with other people, possibly make some local acquaintances

Dog walking is good, I know, for chatting to others - could you drive off with your dogs and go to some more popular dog walking areas? Sounds silly, I know, but you do sound terribly isolated, and I suppose that what I am saying is if you had some local friends, the burden might not seem so great.

You have friends here anyway, so keep posting. Look after yourself. I'm glad you found us.

I'm so glad too!!!
You are all so kind and helpful.
And I'm grateful for your support

I've tried to make friends through dogs..
When I was in Milan it was so easy.
My dogs are not used to walking on leash, but I might try to go to a dogs' area with one of them. The other is frightened of getting into a car, maybe because of something that had occurred to him before I rescued him from an awful municipal pound in the South Italy.
When I arrived here I went to the local pound to offer my help.
I helped with cleaning and feeding the dogs.I also bought them some food and medicines, but nobody seemed to feel like making friends with me.
The friendliness of Italian people seems to be a stereotype here

About my safeness here.
I will keep another mobile phone with its charger in my bedroom where I can lock in safely.
My husband has never been a violent person, but this disease changes people, I'm afraid.

 

[sajimjo]

Hi Margherita, just been reading your diary, your English is extremely good, but sorry it has been necessary for you to join TP.
You kindly posted on my thread about the blackbird singing, do hope that doesn't happen again.
I meant to post before but get little time when I can concentrate (OH at day centre now). We live in the country with no neighbours, no family in the area, the one person who does call regularly is the farmer (also my landlord) who lost his father to dementia so is sympathetic. After over 4 years I am getting more help as OH goes to a local day centre attached to a care home and they have just started a support group. Also OH has one daughter but they have not spoken for 20 years, definitely no help there. I have 2 sons but they didn't help their father who died of dementia last year, so don't expect much help there either.
Do you have such things as day centres in Italy? Pleased you made contact with someone else in Italy through this site.
If I didn't have the countryside around me I think I would go mad!
Hope you find some help from somewhere.

 

[margherita]

Hi Margherita, just been reading your diary, your English is extremely good, but sorry it has been necessary for you to join TP.
You kindly posted on my thread about the blackbird singing, do hope that doesn't happen again.
I meant to post before but get little time when I can concentrate (OH at day centre now). We live in the country with no neighbours, no family in the area, the one person who does call regularly is the farmer (also my landlord) who lost his father to dementia so is sympathetic. After over 4 years I am getting more help as OH goes to a local day centre attached to a care home and they have just started a support group. Also OH has one daughter but they have not spoken for 20 years, definitely no help there. I have 2 sons but they didn't help their father who died of dementia last year, so don't expect much help there either.
Do you have such things as day centres in Italy? Pleased you made contact with someone else in Italy through this site.
If I didn't have the countryside around me I think I would go mad!
Hope you find some help from somewhere.

Hi Sajimjo!
Thanks for writing in my diary
Your situation is not different from mine.
We both live in isolation and are the only carers
My husband is still in the early stage of dementia and would never accept to go to a day centre. I don't know if there is one not far from here.
He spends long hours doing gardening, which he likes.
At night he is tired and gets to sleep as soon as it is dark.
I am not used to living in the country, but I think that it is good for my husband
He doesn't seem to miss the few friends he had when we lived in Milan, let alone his son.
They have always had a cold , loveless relationship. It is difficult to say whose fault it is.
They have both their part of responsability. Anyway, too late for things to be changed.
At the moment I can only watch and wait.. which I am not good at, but I have to learn .

 

[polly148]

We're here to support u

Hi Margherita,
I too am new to TP, I read a lot of posts but write very little atm.
My partner of 8 yrs was diagnosed with Alzheimer's almost 3 yrs ago. He's at the same stage as your husband. I've also found he has no empathy, even when my grandchildren could be in harms way he would stand watch and do nothing, my 3yr old granddaughter fell of her bicycle and hurt her self she was crying and he laughed never moved to pick her up even tho he was next to her. He seldom washes but remembers to shave with an electric razor nearly every day. I do amuse him and tell the odd wee lie just to get away on my own. The constant repeating him self and looking things is stressful but it could be worse. I feel quite alone even tho I've family around me, we moved last October 2016 from his home town to where my family are. He didn't care where he was as long as it was with me, no support from his family and he has 12 grown adult kids ... my OH is 64 I'm 53.... I'm glad u joined the TP group. I love being part of It, the information is invaluable. Take care were here for u

 

[margherita]

Hi Margherita,
I too am new to TP, I read a lot of posts but write very little atm.
My partner of 8 yrs was diagnosed with Alzheimer's almost 3 yrs ago. He's at the same stage as your husband. I've also found he has no empathy, even when my grandchildren could be in harms way he would stand watch and do nothing, my 3yr old granddaughter fell of her bicycle and hurt her self she was crying and he laughed never moved to pick her up even tho he was next to her. He seldom washes but remembers to shave with an electric razor nearly every day. I do amuse him and tell the odd wee lie just to get away on my own. The constant repeating him self and looking things is stressful but it could be worse. I feel quite alone even tho I've family around me, we moved last October 2016 from his home town to where my family are. He didn't care where he was as long as it was with me, no support from his family and he has 12 grown adult kids ... my OH is 64 I'm 53.... I'm glad u joined the TP group. I love being part of It, the information is invaluable. Take care were here for u

Hi Polly!
TP is so important to me , too. I feel i can speak and be understood.
In Italy there is nothing like TP and there aren't all the social services which you have in the UK.
If you want help, you have to pay for it.
Also my husband is in his early stage of dementia, but I am already impatient and intolerant. I feel guilty and worried. What will happen when the situation gets worse?
How will I cope with it?