Margherita's diary

[margherita]

This is the first time I have written in this forum.
I am Italian from Milan, but my husband and I have been living in a God-forgotten -place the countryside in Piedmont, among hills and vineyards since he retired

Ours is a second marriage. We have known for 17 years and married for 8
I'm 65 , he is 79.

My husband was diagnosed Alzheimer in March 1916 by a neurologist in a UVA (Unit for eValuation of Alzheimer)

At the moment he seems to be still independent. He drives the car, but only when he has to go to known places and not too far (ten minutes'drive)
He can dress and wash and eat, but he is much slower than before
The problem is with memory ..he forgets most of the things he does and , when he remembers them, he misplaces the time and the day when he did them
I have realized that he often misunderstand what he hears on tv and finds it difficult to follow instructions
And..he often seems unable to find things that are under his eyes..

You might wonder why I have decided to take part in a forum of a foreign country and in a language which is not mine, though I 'have studied it for years
In Italy there are not forums such as yours. I searched the web, but I could find none.

Thank you to those who have read my post in a language which might sound too stiff and formal and full of mistakes
I need to share what is happening to both of us

 

[netsy22]

Your English is perfect, Margherita! You sound isolated. Do you have family and friends nearby? What sort of care / financial help is available to you there? Do you want to sell up and move to somewhere easier to manage? It is easier to think ahead now than wait for a crisis to hit. I wish you well.

 

[canary]

Hello margherita and welcome to Talking Point.

Your English is very good and there are no problems with you posting on a foreign forum. In fact, you are not the only one. Most of them are from English speaking countries like USA and New Zealand, but I can think of at least one whose first language is not English - she lives in Brazil. You may wish to add "Italy" to your location in case people try to give you advice about things like benefits which are not relevant to where you live. This setting is found under "My profile" on the bar at the top.

Your husbands symptoms sound very familiar and I do hope you are getting some help.

 

[Izzy]

Hello and welcome to Talking Point. The forum is for everyone, no matter where you are. I think your English is marvellous. I tried to learn Italian but I don't think I worked hard enough!

I'm glad you found the forum and I know you will get lots of help and support here.

 

[margherita]

Your English is perfect, Margherita! You sound isolated. Do you have family and friends nearby? What sort of care / financial help is available to you there? Do you want to sell up and move to somewhere easier to manage? It is easier to think ahead now than wait for a crisis to hit. I wish you well.

You are right. We are isolated. Not only do we live in an isolated house, but we have no acquaintances, let alone friends here.
My husband moved here eleven years ago when he retired (he used to be a pediatrician)He was fed up with noisy and polluted Milan and dreamed of the peaceful life in the countryside. I joined him three years ago when I retired too.
Milan is 140 km from here and I still have my small flat there.
We have both a son. His is 47 . A very difficult relationship, marked by reciprocal indifference , lack of understanding and love. We can't rely on him , but much better so.
My 40-year-old son lives near Milan, we have a good relationship, lots of phone calls, but I haven't seen him since a few days before Christmas.
I am the only person who looks after my husband. There a girl who helps with the housework twice a week and a boy who helps with the garden.
My husband doesn't want anyone around, so it's almost impossible for me to go to Milan or anywhere else.
My husband doesn't want to pay for someone to look after him when I am away and I cannot force him. Maybe when things get worse..because they will, won't they?
He says he will never leave this place which he likes and where he feels well at ease. I don't, but he seems not to care for my opinions .
I can only wait , while I try to figure in my mind what life will be like in..some months? years?

 

[Shedrech]

hello margherita
welcome from me too
unfortunately, you are right in that your husband's condition will deteriorate, which may then give you the chance to make some different decisions for the both of you - it's sad that dementia takes away a person's empathy so they only see the world their way and have no sympathy for or comprehension of their loved one's feelings and needs, leaving you both physically and emotionally isolated
I hope being a part of this helpful and caring community will give you some of the support you need - I'm glad you've found us, so you'll be able to chat and share whatever's on your mind and feel less alone
best wishes

 

[margherita]

Your husbands symptoms sound very familiar and I do hope you are getting some help.

I think it will take some time before my husband realizes he can't rely on my presence only.
The place where I live in nice, but I feel I'm in prison. Gilded, but prison.
Should I learn to sing in cage, too?

I've added the location as you suggested.

 

[margherita]

Hello and welcome to Talking Point. The forum is for everyone, no matter where you are. I think your English is marvellous. I tried to learn Italian but I don't think I worked hard enough!

I'm glad you found the forum and I know you will get lots of help and support here.

I have a passion for English. Whenever I can I read English novels , watch English films.
Italian is not so easy to learn and it is spoken by few people all over the world.
English is a world language

Thanks for the support you are giving me!!

 

[margherita]

hello margherita
welcome from me too
unfortunately, you are right in that your husband's condition will deteriorate, which may then give you the chance to make some different decisions for the both of you - it's sad that dementia takes away a person's empathy so they only see the world their way and have no sympathy for or comprehension of their loved one's feelings and needs, leaving you both physically and emotionally isolated
I hope being a part of this helpful and caring community will give you some of the support you need - I'm glad you've found us, so you'll be able to chat and share whatever's on your mind and feel less alone
best wishes

What you say about the lack of empathy is so true, but I had never thought of it as a specific symptom of Alzheimer
How silly of me!
I needed someone to tell me.
Thanks!
Maybe the next time my hushand's selfishness hurts me and makes me angry, I can think it is not his fault

 

[Izzy]

I'm not sure if you've seen this thread but you might find it helpful.

https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

 

[LynneMcV]

Hi Margherita,

Just wanted to add my welcome to you

I am sorry to hear of your situation and the isolation you have been feeling. The internet is a wonderful thing that can transcend the physical boundaries of countries. I am glad you have found us and are finally in touch with others who understand what it is like to care for someone with dementia and who will be more than happy to support you, encourage you and share experiences.

 

[canary]

I think it will take some time before my husband realizes he can't rely on my presence only.
The place where I live in nice, but I feel I'm in prison. Gilded, but prison.
Should I learn to sing in cage, too?

I've added the location as you suggested.

Oh margherita, you sound so lonely and my heart goes out to you.

Unfortunately, a common symptom of Alzheimers is lack of insight, so your husband may never accept that he needs more than just you. The way to deal with this is not to tell your husband very much - just do it. You have already made a start with getting a cleaner and a gardener, so he is used to having other people around. Why not get someone else in, but dont tell him that this person is there to look after him. Tell him that she is there to do ironing, or extra cleaning. While she is here you could go somewhere else in the house or garden. Then after a couple of times say that you have to go out and think of an excuse for him not to come. Perhaps you are going to the dentist, or some other place that he wouldnt like to go to and it will give you a couple of hours break. This sort of deceit is called "love lies" on here and we use it when our PWD (Person With Dementia) is unable to understand the truth and would get upset if we told them.

It is very difficult, but there comes a time when we have to change from enabling our PWDs wishes and trying to get our PWD to agree to things, to going ahead and doing the things that are necessary.

 

[malomm]

Ciao Margherita, your English is fine, and using this forum will help you along with it. I'm English with an Italian wife in the deep South. She has had problems since 2009, finally taken seriously by medics in 2011, and diagram is




Sent from my Nexus 7 using Talking Point mobile app

 

[malomm]

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.





Sent from my Nexus 7 using Talking Point mobile app

 

[marionq]

As you see you are very welcome. What we all have in common unfortunately is dementia. If we can give you any support or advice then that is what it is all about. Please hang on to your own interests and friends as much as you can because this is a lonely isolating illness for all concerned. Talk all you want, ask anything, rant and moan, whatever you need. We all need somewhere to take our inner concerns.

Very good wishes.

 

[margherita]

I'm not sure if you've seen this thread but you might find it helpful.

Very helpful!!!
And moving when it talks about generosity. I feel I am so mean sometimes..
I don't know why, but I was asked to remove the link you kindly suggested about memory impaired people

 

[margherita]

Hi Margherita,

Just wanted to add my welcome to you

I am sorry to hear of your situation and the isolation you have been feeling. The internet is a wonderful thing that can transcend the physical boundaries of countries. I am glad you have found us and are finally in touch with others who understand what it is like to care for someone with dementia and who will be more than happy to support you, encourage you and share experiences.

Thank you. You are all so friendly and I feel supported and less alone.
I also need to read your experiences because I don't know anyone who is going through what I am.

 

[nitram]

"I don't know why, but I was asked to remove the link you kindly suggested about memory impaired people"

Most likely because you have not made 10 posts you are considered to be a 'newbie' and unable to post links, even if it was in a quote it looks as if it was regarded as part of your post.

Glad you are finding the forum helpful.

 

[canary]

I don't know why, but I was asked to remove the link you kindly suggested about memory impaired people

You cant post links until you have made 10 posts.

Thank you. You are all so friendly and I feel supported and less alone.
I also need to read your experiences because I don't know anyone who is going through what I am.

I think many people can relate to your experiences.
My husband has Frontotemporal Dementia (FTD), but he has exactly the same symptoms.

 

[esmeralda]

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