New and puzzled

[Chizz]

Yes, I agree with @jennifer1967 and @canary
My OH didn't want me to tell others at first. I think she thought others might think her stupid or something. However, when she could accept the position herself, which was fairly early on, then she didn't mind me telling. She didn't and still doesn't like the word "dementia", although she doesn't mind her brain being "tangled". Children had already guessed, and neighbours. By telling, others then know a bit more of how to deal with things, and it makes it easier for them.

 

[jay6]

My husband was like many others, refusing to believe he has dementia. But he had a really bad stroke 10 years ago so did agree to attendance allowance being done, but was totally against LPA as he saw this as me wanting his money etc.
Even though he doesn't really believe he has dementia he has now agreed to LOA after talking to him about it in exactly the same way as Banjomansmate. Stating that if anything happened in future, including another stroke, accident etc. the Court of Protection would take over and cost him a lot more money to run his affairs. He now understands it wouldn't come into effect unless he becomes incapable of doing it himself. He still isn't completely happy but money talks! and he doesn't like the idea or an unknown taking charge.

 

[liz4]

I think it still feels like a taboo to tell people of a dementia diagnosis, sadly, but I certainly found that telling close friends, in confidence, was really helpful. Before that I found it very hard carry the knowledge alone, because as the prime carer you will find you’re constantly trying to protect and anticipate tricky interactions, to avoid people ‘guessing’. My husband was worried that people would treat him differently if they knew - but had no insight into the fact that friends had already noticed changes. Without exception, all our friends and family have been loyal and supportive in so many ways.

 

[Violet Jane]

I think that by the time someone is diagnosed it is pretty apparent to anyone who sees the person regularly for any length of time that something is amiss. The changes might be put down to depression or to work, financial or marital problems but other people will have noticed. Dementia is not usually diagnosed for at least a year after symptoms start and it’s not diagnosed unless there are quite obvious symptoms and so it’s unrealistic to think that friends and relatives won’t have noticed changes in the behaviour of the person.

Whilst I think that it’s better to be open with other people early on I’m afraid that sufferers and carers have good reason to be concerned about telling other people as many people do drift away. I think that this is less likely to happen in the case of a couple as the carer is there to manage interactions and head off problems.

 

[Mary 85]

can i say that as soon as my husband had a diagnosis, i told the children[adult] and his sister. as it was lockdown and he was sheilding{COPD} we told the neighbours as and when we saw them. he wasnt allowed out of the front garden so if anyone saw him they could direct him back. since then, the neighbours look out for him and check hes ok as he passes them. they will even offer lifts to him if they see him walking along.
ive never seen the point of keeping it a secret. its not shameful or bad and the stigma will remain if its kept behind closed doors and never spoken about. you couldnt hide a broken leg so why hide dementia

Thanks @jennifer1967, Straight after the diagnosis, we also told the adult children (although not yet to our daughter as she is abroad and sitting exams) and the siblings. The doctor told us he was at an early stage and the duration of it is about three years. Things hasn't changed much during this 3-4 months. Also my OH doesn't like the idea of sharing it yet and I don't want to put pressure on him. But I totally agree with you. It can be very helpful for the neighbours to know and if we don't talk about it, the stigma attach to it will remain. Nevertheless, I don't find it easy. It is like one has a mental illness, depression etc. You share it with people you know they care about you but it is hard to tell a neighbour if you aren't close to them. Nevertheless, once the deterioration advances, I will inform the neighbours for his own safety and I am sure they will be understanding and supportive.

 

[jennifer1967]

Thanks @jennifer1967, Straight after the diagnosis, we also told the adult children (although not yet to our daughter as she is abroad and sitting exams) and the siblings. The doctor told us he was at an early stage and the duration of it is about three years. Things hasn't changed much during this 3-4 months. Also my OH doesn't like the idea of sharing it yet and I don't want to put pressure on him. But I totally agree with you. It can be very helpful for the neighbours to know and if we don't talk about it, the stigma attach to it will remain. Nevertheless, I don't find it easy. It is like one has a mental illness, depression etc. You share it with people you know they care about you but it is hard to tell a neighbour if you aren't close to them. Nevertheless, once the deterioration advances, I will inform the neighbours for his own safety and I am sure they will be understanding and supportive.

you usually find that if you tell a couple of neighbours, it tends to spread on its own without any more effort therefore it isnt you that is responsible. where did they get the amount of time from?

 

[Mary 85]

I think that by the time someone is diagnosed it is pretty apparent to anyone who sees the person regularly for any length of time that something is amiss. The changes might be put down to depression or to work, financial or marital problems but other people will have noticed. Dementia is not usually diagnosed for at least a year after symptoms start and it’s not diagnosed unless there are quite obvious symptoms and so it’s unrealistic to think that friends and relatives won’t have noticed changes in the behaviour of the person.

Whilst I think that it’s better to be open with other people early on I’m afraid that sufferers and carers have good reason to be concerned about telling other people as many people do drift away. I think that this is less likely to happen in the case of a couple as the carer is there to manage interactions and head off problems.

You are right @Violet Jane , people who sees him regularly might have already guessed that there is something wrong. It isn't something that one can keep hidden for long. Thanks and best wishes.

 

[Mary 85]

you usually find that if you tell a couple of neighbours, it tends to spread on its own without any more effort therefore it isnt you that is responsible. where did they get the amount of time from?

Very true @jennifer1967 !

 

[HazelT]

Thanks for that Jennifer but my husband doesn't like the idea. He says he doesn't have dementia, he has Alzheimer's and that I am not caring for him! He gets really annoyed when I come out with information. He is still leaving the POA application for later. He doesn't want to agree to POA because he thinks I will start taking control. I told him that is just for the later stages when he is really unwell. It is getting hard to get him do things. But I will take your advice and ask Age UK about it. Thanks again.

Definitely ask for support filling in the form. It is a huge form and not easy to know what to put where! I managed to get POA done by filling in one for me as well. Our sons are our attorneys and I am wondering if I should have been on my husbands as well. Hope it doesn’t cause problems. Denial and not wanting to do things seems common. My husband is very unmotivated to sort anything.

 

[Mary 85]

Definitely ask for support filling in the form. It is a huge form and not easy to know what to put where! I managed to get POA done by filling in one for me as well. Our sons are our attorneys and I am wondering if I should have been on my husbands as well. Hope it doesn’t cause problems. Denial and not wanting to do things seems common. My husband is very unmotivated to sort anything.

@HazelT, I will be his attorney. I don't want to be bothering my son while I can do the job but later on, I plan to my POA and then have my son as my attorney. My husband also is very unmotivated for doing things. I imagine he wants to believe there is still a lot of time in front of us. I would probably have behaved in the same way if I were in his shoes. Not easy to accept such a diagnosis for anyone. Sometimes the reality hits me bad and get depressed but I don't want to turn to medication.
Wish you and all of us here strength and courage.

 

[sdmhred]

We’ve told mums friends who live away bit by bit as needed. As others have said it’s sad tho as people stop contacting. We’ve had a couple of cards saying they woild like to take mum out for lunch, I reply explaining she would love to see them, but May find conversation hard but please come over for tea and cake. It all goes quiet then. I’m thankful for the 2 faithfuls who do keep in touch with her xx

 

[Mary 85]

We’ve told mums friends who live away bit by bit as needed. As others have said it’s sad tho as people stop contacting. We’ve had a couple of cards saying they woild like to take mum out for lunch, I reply explaining she would love to see them, but May find conversation hard but please come over for tea and cake. It all goes quiet then. I’m thankful for the 2 faithfuls who do keep in touch with her xx

Yes, it is sad but it is to be expected that some people would stop contacting. It is nice that your mum has two loyal friends.

 

[Mary 85]

Hello Sue,

It has been some time l have been avoiding to visit this forum for various reasons. I want to forget and make myself believe that isn’t happening.

I am also busy with organising the kitchen renovation and ground floor en-suite that we might need later on. It is a big upheaval. My husband is there but l feel like l have to deal with it all. Then there are the children to support.

He seems to be turning to me more than he ever did. But l can’t be sure if l am imagining things.

He is all right but not entirely. He gets angrier than he used to be. Shouts more.
The changes are so imperceptible but there are there.
I find his facial expressions are changing and is disturbing. I don’t know if most of the time is my imagination. But for sure l am working harder than l used to do.

He is participating to a research which proved to be demanding.

I can’t tell why l feel so tired and lacking in motivation.

I am sorry l wasn’t able to keep in touch. I hope you and your OH are keeping well and will hear from you when you can.

This is all about me, sorry.
Let me know how you and your OH are doing.
Have you had time away with grandchildren?

 

[Sue741215]

Hi @Mary 85
Please don’t be sorry about talking about your life that is what the forum is for and it is always interesting to hear others experiences.

To answer your question yes we went away with the grandchildren and Oh behaved very well - he is so patient - staying in while I took the kids to a couple of activities and not really noticing when the children had tantrums. I tried to keep all activities to about an hour with stops at a pub or cafe for oh to enjoy. He was much better than usual about walking as well. Before we went away I had a wobble in worrying about him telling his joke when children were around as parents can be very sensitive. However he wanted to go on short walks round the site and I just let him go - decided I’d deal with any problem that arose and none did so all ok. My sister and brother in law came as well in separate accommodation which gave me someone to talk to and spend the evenings with.

I’m sorry your oh is getting angrier - he is probably getting more frustrated with his condition though it could also be brain changes affecting his aggression. Whichever it must be horrible for you. I am lucky that my oh is never aggressive so far - if anything he seems more settled into his condition. I don’t know if this is due to his easy disposition or to the Memantine he takes but perhaps a combination of both.

You wrote previously that you were surprised at no interaction with GP or memory clinic as I was. If you have not reached out to your GP I suggest you do, I think there is more awareness than there used to be and that most GPS will be helpful if asked. I don’t know if a change in medication will help your husband with his increasing anger but it is worth a try. He/She may also help with your tiredness and may know help available in your area.

I know you are busy with your house renovations but if you don’t already I would urge you to try and build a routine where you get out on your own preferably to meet people at least a couple of times a week. As time goes on routine becomes helpful and probably necessary for him - if your oh is used to you going out at set times I believe (I won’t say know ) your oh will accept it more down the line whether staying on his own or with others.

Hopefully you are just feeling temporarily more down but if not please seek help - we need as much help as we can get. You cannot look after him if you don’t look after yourself and you are entitled to an ok life even if a wonderful life is not possible.

Keep posting if it helps - I will be hoping to hear things are getting better for you.

Lots of love and best wishes to you and your oh

Sue

 

[Tricot]

Then there are the children to support.

Please find a way to let your children know that you cannot be so available and you now need their support. They're adults. You have so much on your plate. You can't continue to be all things to all people. I'm sorry life is so hard and wish you all the best. Be kind to yourself.

 

[Yeliab]

That is tough, but like others said - the diagnosis doesn't mean an immediate change - so do live your life (like you're doing - trip to Italy etc!) -

That said a POA is very important. One suggestion (this is what we did if it helps); My sister and I got POA over both my parents. My mom was ok at the time, but I think it alleviated the frustration or acknowledgement for my dad , meaning it wasn't just focused on him. The conversation was around "you're both getting older and for safety reasons if anything should happen, this will help us to take care of things - medical, finance etc". So possibly do something similiar - have your kids get a POA over you both.
It started for us right around when my dad was diagnosed and luckily admitted to my mom, he was having trouble doing their taxes (I live in the US, taxes here can be complicated...). After the POA I started doing them and found he hadn't paid taxes the last 2 yrs....since then the POA has been vital in all of the finances ("fixing" a lot of mistakes and making decisions) as well as Health (medications, bills, etc.)

Stay strong

 

[Mary 85]

Hi @Mary 85
Please don’t be sorry about talking about your life that is what the forum is for and it is always interesting to hear others experiences.

To answer your question yes we went away with the grandchildren and Oh behaved very well - he is so patient - staying in while I took the kids to a couple of activities and not really noticing when the children had tantrums. I tried to keep all activities to about an hour with stops at a pub or cafe for oh to enjoy. He was much better than usual about walking as well. Before we went away I had a wobble in worrying about him telling his joke when children were around as parents can be very sensitive. However he wanted to go on short walks round the site and I just let him go - decided I’d deal with any problem that arose and none did so all ok. My sister and brother in law came as well in separate accommodation which gave me someone to talk to and spend the evenings with.

I’m sorry your oh is getting angrier - he is probably getting more frustrated with his condition though it could also be brain changes affecting his aggression. Whichever it must be horrible for you. I am lucky that my oh is never aggressive so far - if anything he seems more settled into his condition. I don’t know if this is due to his easy disposition or to the Memantine he takes but perhaps a combination of both.

You wrote previously that you were surprised at no interaction with GP or memory clinic as I was. If you have not reached out to your GP I suggest you do, I think there is more awareness than there used to be and that most GPS will be helpful if asked. I don’t know if a change in medication will help your husband with his increasing anger but it is worth a try. He/She may also help with your tiredness and may know help available in your area.

I know you are busy with your house renovations but if you don’t already I would urge you to try and build a routine where you get out on your own preferably to meet people at least a couple of times a week. As time goes on routine becomes helpful and probably necessary for him - if your oh is used to you going out at set times I believe (I won’t say know ) your oh will accept it more down the line whether staying on his own or with others.

Hopefully you are just feeling temporarily more down but if not please seek help - we need as much help as we can get. You cannot look after him if you don’t look after yourself and you are entitled to an ok life even if a wonderful life is not possible.

Keep posting if it helps - I will be hoping to hear things are getting better for you.

Lots of love and best wishes to you and your oh

Sue

Hi Sue @741215, 🌺

Thanks for your reply. It is good to hear that your trip with grandchildren went so well and you got time to spend with your sister and BIL. Your OH is doing so well. I mean he sounds calm, contended, enjoying the present and children's company without minding their tantrums. He managed to have a good time on his own too. It could be, as you say, down to his medication and personality but I also believe that it has to do with his well structured routine. I realise how important routine is and will try to follow your example although being a South European I have some issues when it comes to keeping time but I am generally all right with organisation and managing emergencies

We are very happy with TES (Transcranial Electrical Stimulation), a research run by Imperial but the journey is long, over 3 hours with return! There are awful traffic jams especially when you cross the river. My OH gets very tired. On the top of it one has to put up with the awful music that the driver likes to listen to. My OH wants to do some work for his tuition but it isn't possible.

I used to love London but now dream of being far away. We stay here for our son but going to his house is an equally long journey. Moving to a new part of the country is a big decision and is always in my mind. My husband is from Liverpool and I love the sea so, for a while I was tempted to get a bungalow in the surrounding areas by the sea. I was disappointed when I found out that care in some places wasn't good and gave up. We are not at an age for adventures. Now we have this upheaval with building works instead. They will start in the second week of October.

My OH has always been a kind and never a violent man but he appears to be more stressed (especially as he has issues with prostrate and being in need of going to toilet so often). He gets anxious with the long taxi rides for instance. He seems to disagree more strongly with me on various issues than he used do. He is also principled and has always been set in his English ways and me not being so English seems to be more of an issue now that we are elderly than it used to be. I guess both of us are returning to being our 'true' selves.

Today he had an afternoon nap and woke up panicking because I had made a noise. He started shouting about what was going on and happening. I told him he was having a nap, the time of the day and the day and he was reassured.

I am every day and any time on call with my daughter who is studying in a French speaking country. I wish I wasn't a French speaker but then she wouldn't have been there. I do some readings or even entire book readings she gives me and I follow a few lectures online to help. I enjoy most of it as psychology is an interesting subject to me but I am often under pressure. Also my daughter can be a 'difficult customer'!

After the diagnosis, we talked with the GP (phone consultation) who prescribed Donepezil and that was it. I want to ask questions as I am confused. He was diagnosed with Alzheimer's and people talk about so many varieties of dementia. What exactly is your OH diagnosed with? Is it also just Alzheimer's. I don't know if we should have another appointment. I think it depends of the GP. Not all of them are knowledgeable on the subject.

I am reading "The End of Memory" by Jay Ingram on Libby. It is very interesting to read about the history of AD, Alois Alzheimer, his first patients, how well his discovery was received in 1905 (not great interest. Freud was so popular at this time and he didn't need money to have a lab) etc. and the real interest in the subject that appeared in 1990's. It took us a very long time to grasp the importance of Alzheimer's work. I love history and have just discovered that the history of psychology, psychiatry etc is equally interesting than the 'usual' history. I wish I had more time to read but don't these days.

Are you back home? How old are your grandchildren? I have none. I wish for them and at the same time I don't. Life isn't always fair or easy.

May all things continue to be well for you both and family.

Have a peaceful and restful end of the week.

A big hug with love,

Mary 🦋💌

 

[Mary 85]

Please find a way to let your children know that you cannot be so available and you now need their support. They're adults. You have so much on your plate. You can't continue to be all things to all people. I'm sorry life is so hard and wish you all the best. Be kind to yourself.

Hi @Tricot, The children know about it now. They are both adults. One is studying abroad and needs our support and the other one lives here but really far. He has a demanding job but helps the way he can. He offered us a cruise and paid some expensive medical bills when we wanted to confirm the diagnosis. I get worried about them. We don’t stop worrying or wanting to help them even when they are adults. I need some help on daily basis but for the time being my OH continues to help when he can but not like before. It seems like it is the early stage still but there are small changes like he can get stressed before outings or not wanting to have an outing that would involve long journey. l need to be patient and this sometimes feels like a pressure. Some days are better than others but that’s is life. Thanks for listening. Best wishes to you and your OH too.

 

[Sue741215]

Hi Sue @741215, 🌺

Thanks for your reply. It is good to hear that your trip with grandchildren went so well and you got time to spend with your sister and BIL. Your OH is doing so well. I mean he sounds calm, contended, enjoying the present and children's company without minding their tantrums. He managed to have a good time on his own too. It could be, as you say, down to his medication and personality but I also believe that it has to do with his well structured routine. I realise how important routine is and will try to follow your example although being a South European I have some issues when it comes to keeping time but I am generally all right with organisation and managing emergencies

We are very happy with TES (Transcranial Electrical Stimulation), a research run by Imperial but the journey is long, over 3 hours with return! There are awful traffic jams especially when you cross the river. My OH gets very tired. On the top of it one has to put up with the awful music that the driver likes to listen to. My OH wants to do some work for his tuition but it isn't possible.

I used to love London but now dream of being far away. We stay here for our son but going to his house is an equally long journey. Moving to a new part of the country is a big decision and is always in my mind. My husband is from Liverpool and I love the sea so, for a while I was tempted to get a bungalow in the surrounding areas by the sea. I was disappointed when I found out that care in some places wasn't good and gave up. We are not at an age for adventures. Now we have this upheaval with building works instead. They will start in the second week of October.

My OH has always been a kind and never a violent man but he appears to be more stressed (especially as he has issues with prostrate and being in need of going to toilet so often). He gets anxious with the long taxi rides for instance. He seems to disagree more strongly with me on various issues than he used do. He is also principled and has always been set in his English ways and me not being so English seems to be more of an issue now that we are elderly than it used to be. I guess both of us are returning to being our 'true' selves.

Today he had an afternoon nap and woke up panicking because I had made a noise. He started shouting about what was going on and happening. I told him he was having a nap, the time of the day and the day and he was reassured.

I am every day and any time on call with my daughter who is studying in a French speaking country. I wish I wasn't a French speaker but then she wouldn't have been there. I do some readings or even entire book readings she gives me and I follow a few lectures online to help. I enjoy most of it as psychology is an interesting subject to me but I am often under pressure. Also my daughter can be a 'difficult customer'!

After the diagnosis, we talked with the GP (phone consultation) who prescribed Donepezil and that was it. I want to ask questions as I am confused. He was diagnosed with Alzheimer's and people talk about so many varieties of dementia. What exactly is your OH diagnosed with? Is it also just Alzheimer's. I don't know if we should have another appointment. I think it depends of the GP. Not all of them are knowledgeable on the subject.

I am reading "The End of Memory" by Jay Ingram on Libby. It is very interesting to read about the history of AD, Alois Alzheimer, his first patients, how well his discovery was received in 1905 (not great interest. Freud was so popular at this time and he didn't need money to have a lab) etc. and the real interest in the subject that appeared in 1990's. It took us a very long time to grasp the importance of Alzheimer's work. I love history and have just discovered that the history of psychology, psychiatry etc is equally interesting than the 'usual' history. I wish I had more time to read but don't these days.

Are you back home? How old are your grandchildren? I have none. I wish for them and at the same time I don't. Life isn't always fair or easy.

May all things continue to be well for you both and family.

Have a peaceful and restful end of the week.

A big hug with love,

Mary 🦋💌

Thank you for your interest Mary. Yes I've been home a while and OH is still settled - my life feels relaxed compared to yours. I like to be busy and things to look forward to are important. I have some good friends and sisters who know OH well and are relaxed about his little ways. He likes his routines and although we went out for a late lunch today - still eating at around 3.30 when we came home at 5.30 he immediately wanted to make himself a sandwich. When we go out he has a routine which is set alarm - lock front door, check sidegate is locked, go back and check handle of front door - check garage door is locked , get in car kick his feet on the edge of car 3 times to dislodge any leaves then he is ready to leave. It used to drive me mad especially if we were a bit late but now I am relaxed about it - one of the most valuable lessons I have learnt from others on the forum is that you cannot change PWDs - it is me that has to adapt and it does make life easier. Knowing I have it easier than most people on the forum also helps me - I can't complain when my OH is so easy compared to others.

You asked about my grandchildren - I have 8 - again I am lucky I have them to enjoy but as they mainly live away I am only called on for occasional babysitting which I am happy to do - the eldest are teenagers now - they grow up quickly - it is interesting to watch them grow up.

OH does have just Alzheimers as far as I know - he was diagnosed with Alzheimers like changes following a brain scan after a tumour behind his eye. I have not had any follow up re the Alzheimer's - I believe the GP is supposed to see him once a year but it does not happen. However when I have taken him to the GP they have been great with him - I wrote a list of 6 or 7 things I wanted checked and he patiently went through all of them (eg just things like diabetes as he is thirsty all the time, Prostate just in case a problem I wasn't aware of). There is a notice in the surgery about Dementia support so I think help is there if I need it but as I am happy with his medication and he is fit and well in other ways I don't feel a need at the moment. I originally felt a bit bitter about how they are just discharged from the memory clinic and still feel it is wrong as carers need to have support not to mention recognition of the difficulties they face. I feel things are changing and there is more recognition -I don't know if you and others feel that.

I am glad to hear that you are enjoying studying and helping your daughter - it is important to keep going with the things that are important to you. My degree was in Psychology and Education so I too have an interest although I must admit my reading these days tends to be easy reading - usually detective novels. I admire you for your more in depth reading. I hope your daughter is mindful of the strains on your life and doesn't expect too much of you.

I do hope your upcoming work on the house does not cause too much disruption and that the changes make life easier for you both. Your OH seems still to be fairly independent. You say you are learning to be patient - it sounds as though you are doing really well and I hope that as for me it becomes easier to be patient mainly because the opposite just causes us more hassle.

The main thing we have to do is treasure the good moments and do things to give ourselves and our Ohs happiness where we can. Emphasis on ourselves - if we aren't happy we won't be able to care as well or that's my excuse anyway. Best wishes to you and your family.

 

[Mary 85]

Thank you for your interest Mary. Yes I've been home a while and OH is still settled - my life feels relaxed compared to yours. I like to be busy and things to look forward to are important. I have some good friends and sisters who know OH well and are relaxed about his little ways. He likes his routines and although we went out for a late lunch today - still eating at around 3.30 when we came home at 5.30 he immediately wanted to make himself a sandwich. When we go out he has a routine which is set alarm - lock front door, check sidegate is locked, go back and check handle of front door - check garage door is locked , get in car kick his feet on the edge of car 3 times to dislodge any leaves then he is ready to leave. It used to drive me mad especially if we were a bit late but now I am relaxed about it - one of the most valuable lessons I have learnt from others on the forum is that you cannot change PWDs - it is me that has to adapt and it does make life easier. Knowing I have it easier than most people on the forum also helps me - I can't complain when my OH is so easy compared to others.

You asked about my grandchildren - I have 8 - again I am lucky I have them to enjoy but as they mainly live away I am only called on for occasional babysitting which I am happy to do - the eldest are teenagers now - they grow up quickly - it is interesting to watch them grow up.

OH does have just Alzheimers as far as I know - he was diagnosed with Alzheimers like changes following a brain scan after a tumour behind his eye. I have not had any follow up re the Alzheimer's - I believe the GP is supposed to see him once a year but it does not happen. However when I have taken him to the GP they have been great with him - I wrote a list of 6 or 7 things I wanted checked and he patiently went through all of them (eg just things like diabetes as he is thirsty all the time, Prostate just in case a problem I wasn't aware of). There is a notice in the surgery about Dementia support so I think help is there if I need it but as I am happy with his medication and he is fit and well in other ways I don't feel a need at the moment. I originally felt a bit bitter about how they are just discharged from the memory clinic and still feel it is wrong as carers need to have support not to mention recognition of the difficulties they face. I feel things are changing and there is more recognition -I don't know if you and others feel that.

I am glad to hear that you are enjoying studying and helping your daughter - it is important to keep going with the things that are important to you. My degree was in Psychology and Education so I too have an interest although I must admit my reading these days tends to be easy reading - usually detective novels. I admire you for your more in depth reading. I hope your daughter is mindful of the strains on your life and doesn't expect too much of you.

I do hope your upcoming work on the house does not cause too much disruption and that the changes make life easier for you both. Your OH seems still to be fairly independent. You say you are learning to be patient - it sounds as though you are doing really well and I hope that as for me it becomes easier to be patient mainly because the opposite just causes us more hassle.

The main thing we have to do is treasure the good moments and do things to give ourselves and our Ohs happiness where we can. Emphasis on ourselves - if we aren't happy we won't be able to care as well or that's my excuse anyway. Best wishes to you and your family.

Hi @Sue,

Thanks for your reply. l am glad you and your OH are keeping well. I dream for a peaceful routine too. It is like we are going through a transitional period until we will eventually find a more stable way of life. Also, learning to adapt and accept things l can’t change, as you say, it will help.

l assume that your OH eye tumour has been dealt with and not malignant. I am impressed with his appetite. My OH eats his meals but not with great enjoyment. There has never been any concern about him gaining any weight but he has serious issues with prostate and all the troubles that go with it. This stresses him a lot when he has to go out. He is soon to see a specialist.

He is now busy with participating to research. It is called Trancranial Electrical Stimulation (TES). They pay for the taxi ride but it is a long journey which makes him anxious. On the other it gives me some time alone. I keep busy but l also enjoy the quiet time which rather selfish. l am working on planning the details of the building works as we are to meet the builder this Saturday to finalise the plans. My OH isn’t that interested in the whole project but l need to consult him as there are things l don’t entirely get. I feel like l am forcing him to sit down and listen which he does halfhearted. l can’t wait for December when will all be over.

l hope my daughter will need me less this coming academic year. My mind isn’t what it used to be. How interesting you studied psychology! Have you practiced it professionally? Your knowledge must be helping also in understanding and managing you OH’s needs.

l am thinking of seeing the GP and asking if my OH could see a neurologist who is specialised in neurodegenerative diseases. The neurologist our son found and we had consulted to confirm the diagnosis of the memory clinic, works also for NHS but l doubt she would agree to that. My OH because of his participation to this research was given many tests like MRI, PET etc and l thought it could be a good idea to have them checked and get informed on the progress of his condition. The research people don’t comment on them.

Have a good end to your week and keep well 🤗