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Recent diagnosis

Melliemellie

New member
Aug 21, 2020
9
0
Hi everyone,
I'm new to all this. I started noticing changes in my Mum in November 2018. To cut a long story short she was diagnosed with Alzheimer's in April of this year. She is taking Memantine and is in the early stages. Due to Corona - we decided she would be better living with her partner (my Dad passed away in 2012) in North London and I live in South London - the journey is about 90 minutes. Since restrictions have been lifted we have been going over to see her. She is happy in herself but misses us. It's the little things that I find hard. Yesterday she mentioned she finds it hard to spell which isn't a surprise as I've noticed it in her cards. I'm ok when I'm with her but get upset on the way home and by the time I go to bed I'm really upset. Sorry for the moan as I know there are people in much worse situations but I suppose I am struggling to get my head around it and accept it. I've lost one of my best friends and that's what I'm struggling with. Any advice would be greatly appreciated.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,002
0
England
Welcome from me too @Melliemellie

It’s not easy and all you are feeling is normal, though being ‘normal’ makes it non the less difficult for us to accept. It’s such a cruel disease but we are here to help each other and I’m sure you will find a great deal of help, advice and understanding from members. Look forward to seeing you posting.
 

lemonbalm

Registered User
May 21, 2018
1,802
0
Hello @Melliemellie This is very difficult stuff, so just feel free to say anything or ask anything on here. It is often the little things that take you unawares along the way and can make you feel unutterably sad. It's good that your mum sounds happy though and I hope that there are things which make you smile or even laugh along the way too. Keep posting and tell us how things are going.
 

Melliemellie

New member
Aug 21, 2020
9
0
Hello @Melliemellie This is very difficult stuff, so just feel free to say anything or ask anything on here. It is often the little things that take you unawares along the way and can make you feel unutterably sad. It's good that your mum sounds happy though and I hope that there are things which make you smile or even laugh along the way too. Keep posting and tell us how things are going.
Thank you
 

Melliemellie

New member
Aug 21, 2020
9
0
Welcome from me too @Melliemellie

It’s not easy and all you are feeling is normal, though being ‘normal’ makes it non the less difficult for us to accept. It’s such a cruel disease but we are here to help each other and I’m sure you will find a great deal of help, advice and understanding from members. Look forward to seeing you posting.
Thanks
 

Duggies-girl

Registered User
Sep 6, 2017
3,298
0
@Melliemellie I remember clearly the first time dad was unable to write a birthday card. I had to dictate it to him and it was a simple message. 'To xxxx love from dad' I wrote all his cards from then on. It is an awful thing to see these little abilities being chipped away. It kind of takes your breath away as if you have been punched each time, that's the only way I can describe it.

Sorry that's no help really but what you are feeling is normal, it's like lots of small bereavements along the way. I won't say that you will get used to it because I didn't but it's what happens.

Keep posting, this forum helped me a lot and there is some really good advice on here.
 

Rosettastone57

Registered User
Oct 27, 2016
1,733
0
My mother in law quickly lost the capacity to write anything at all. She struggled with sending cards and couldn't remember or write addresses correctly . Her handwriting became illegible. Once the concept of occasions such as Christmas were lost on her , I sent a note with the cards to all the recipients saying this would be the last time they would get a card due to her losing the capacity to write.
 

karaokePete

Registered User
Jul 23, 2017
6,328
0
N Ireland
Hello @Melliemellie and welcome from me too.

As others have said, your emotions are normal. Indeed, this response is called 'anticipatory grief'(grieving for the life lost when the person is still alive. When my wife was diagnosed the shock was like getting hit in the face with a frying pan! I worked my way through that phase by getting busy with setting affairs like wills and power of attorney in order.

One thing to bear in mind is that while a person can get buried by their increasing symptoms the basic personality is still there and can often be brought to the fore. Discussing things from the distant past can often bring happiness and music is a great stimulus for the brain. I sing with my wife and it enlivens her every time. In fact I see my wife as she always was when I play music and sing with her.
 

karaokePete

Registered User
Jul 23, 2017
6,328
0
N Ireland
By the way, I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Peace lily

Registered User
Jan 30, 2020
113
0
Hello @Melliemellie welcome from me too. Although I rarely post on here, I read all the posts and find so much comfort and strength from knowing that I am not alone in what I am going through and how I am feeling. I can identify so much with your post. It's so difficult seeing a parent losing a little bit of themselves and suddenly being unable to do tasks like writing a card or remembering an important occasion. I don't think it ever gets any easier. My dad has Alzheimer's and although he is further on than your mum on this journey, I still struggle to come to terms with it and still feel overwhelmed by sadness whenever I see him. You are not alone and there are amazingly strong people on this forum with a wealth of wisdom and advice. Please take care.
 

Melliemellie

New member
Aug 21, 2020
9
0
@Melliemellie I remember clearly the first time dad was unable to write a birthday card. I had to dictate it to him and it was a simple message. 'To xxxx love from dad' I wrote all his cards from then on. It is an awful thing to see these little abilities being chipped away. It kind of takes your breath away as if you have been punched each time, that's the only way I can describe it.

Sorry that's no help really but what you are feeling is normal, it's like lots of small bereavements along the way. I won't say that you will get used to it because I didn't but it's what happens.

Keep posting, this forum helped me a lot and there is some really good advice on here.
Thank you so much for that. That’s literally how it feels.
 

Melliemellie

New member
Aug 21, 2020
9
0
Hello @Melliemellie and welcome from me too.

As others have said, your emotions are normal. Indeed, this response is called 'anticipatory grief'(grieving for the life lost when the person is still alive. When my wife was diagnosed the shock was like getting hit in the face with a frying pan! I worked my way through that phase by getting busy with setting affairs like wills and power of attorney in order.

One thing to bear in mind is that while a person can get buried by their increasing symptoms the basic personality is still there and can often be brought to the fore. Discussing things from the distant past can often bring happiness and music is a great stimulus for the brain. I sing with my wife and it enlivens her every time. In fact I see my wife as she always was when I play music and sing with her.
Thank you. Her partner is very musical and they listen to a lot of music on a daily basis
 

Melliemellie

New member
Aug 21, 2020
9
0
Hello @Melliemellie welcome from me too. Although I rarely post on here, I read all the posts and find so much comfort and strength from knowing that I am not alone in what I am going through and how I am feeling. I can identify so much with your post. It's so difficult seeing a parent losing a little bit of themselves and suddenly being unable to do tasks like writing a card or remembering an important occasion. I don't think it ever gets any easier. My dad has Alzheimer's and although he is further on than your mum on this journey, I still struggle to come to terms with it and still feel overwhelmed by sadness whenever I see him. You are not alone and there are amazingly strong people on this forum with a wealth of wisdom and advice. Please take care.
Thank you so much and thank you for taking the time to post a reply.
 

Duggies-girl

Registered User
Sep 6, 2017
3,298
0
@Melliemellie One time dad was trying to move a picture by banging in a nail so I said I would help him. When I got close up to the wall I saw he had made loads of tiny holes in the wallpaper where he had tried to tap a nail in. when I looked at his other pictures I found what must of been hundreds of these tiny holes all over his walls. I couldn't imagine what he had been doing or what his mind must of been thinking at the time but as @karaokePete says dad was still dad with the same personality.

It's like a series of small shocks that just pop out of nowhere and surprise you.
 

Peace lily

Registered User
Jan 30, 2020
113
0
I've watched so many programmes and read so many books on Alzheimer's, trying to gain a better understanding, but nothing can ever prepare you for the reality of this awful disease. When you watch someone you love slowly disappear before your eyes and become more and more distant and unreachable, It's heart breaking. I feel torn, sometimes I don't want to go and see my dad because the pain and anxiety is overwhelming, but then I feel guilty for feeling this way. Then when I do go, I struggle to hold back the tears and don't want to leave him. The turmoil is unbearable.
 

Whisperer

Registered User
Mar 27, 2017
318
0
Southern England
I've watched so many programmes and read so many books on Alzheimer's, trying to gain a better understanding, but nothing can ever prepare you for the reality of this awful disease. When you watch someone you love slowly disappear before your eyes and become more and more distant and unreachable, It's heart breaking. I feel torn, sometimes I don't want to go and see my dad because the pain and anxiety is overwhelming, but then I feel guilty for feeling this way. Then when I do go, I struggle to hold back the tears and don't want to leave him. The turmoil is unbearable.

Dear @Peace lily

Your last few sentences sum up very well the emotional roller coaster caused by Dementia. Anxiety, uncertainty, the guilt monster then the tears and emotional upset. We have emotions to cope with life’s ups and downs, but most humdrum days they are on a very low setting. Then Dementia walks into our lives and the emotional dial gets turned up in volume and seems to get played more and more.

I would like to make a suggestion. Might work might not, we are all different. Two ways to try and let go of painful emotions using mental imagery. Firstly think of emotions as household rubbish. Assign them packaging colours. Anger is red, greed green, sadness black, numbness grey, etc, you decide what colour best describes each emotion. Right now they are all in the waste bag. Imagine walking down your garden path, lifting the dustbin lid and binning those feelings. Best place for them and good riddance till next time. Alternatively, you could post them in your own mind to some unworthy soul. That politician who promises much but delivers little, the relative who always thinks they know best in all situations, etc. Imagine their horror opening your package and out pops all your angry emotions. okay not the best human action but god it feels good, lifts my spirits. Naughty thought but not unappealing.

The key is the imagery of giving the emotions away to a new location or person who you find intensely annoying. No one else need ever know, no harm done if it works for you or some variety of the theme suggested. Emotions are born in our creative minds, some good some very bad. Acknowledge the emotion then let it go. It will return in the future that is the nature of caring, but let us try to make each stay temporary. Build a few moments of emotional peace and with practice they will hopefully develop. Emotions we cannot avoid. Trying to let them go is hard but I hope the above give you food for thought.
 

Peace lily

Registered User
Jan 30, 2020
113
0
Dear @Peace lily

Your last few sentences sum up very well the emotional roller coaster caused by Dementia. Anxiety, uncertainty, the guilt monster then the tears and emotional upset. We have emotions to cope with life’s ups and downs, but most humdrum days they are on a very low setting. Then Dementia walks into our lives and the emotional dial gets turned up in volume and seems to get played more and more.

I would like to make a suggestion. Might work might not, we are all different. Two ways to try and let go of painful emotions using mental imagery. Firstly think of emotions as household rubbish. Assign them packaging colours. Anger is red, greed green, sadness black, numbness grey, etc, you decide what colour best describes each emotion. Right now they are all in the waste bag. Imagine walking down your garden path, lifting the dustbin lid and binning those feelings. Best place for them and good riddance till next time. Alternatively, you could post them in your own mind to some unworthy soul. That politician who promises much but delivers little, the relative who always thinks they know best in all situations, etc. Imagine their horror opening your package and out pops all your angry emotions. okay not the best human action but god it feels good, lifts my spirits. Naughty thought but not unappealing.

The key is the imagery of giving the emotions away to a new location or person who you find intensely annoying. No one else need ever know, no harm done if it works for you or some variety of the theme suggested. Emotions are born in our creative minds, some good some very bad. Acknowledge the emotion then let it go. It will return in the future that is the nature of caring, but let us try to make each stay temporary. Build a few moments of emotional peace and with practice they will hopefully develop. Emotions we cannot avoid. Trying to let them go is hard but I hope the above give you food for thought.
Dear @Whisperer
I haven't logged onto the forum in a while, so have only just read your reply to my post. Thank you so much for taking your time to share your advice. You are so thoughtful and insightful. I do need to find a way to find a balance to my thoughts and not let the negativity overwhelm me. Some days I am preoccupied and I struggle to find any space in my head for anything else.
I need to make a conscious effort to tackle my negative thoughts and use for self compassion (I am my own worst enemy)! I own many books on meditation/mindfulness and have used guided imagery with some young people I work with and know how effective this is. Thank you again. You have not just given me food for thought. You have given me a feast!!!
 

Whisperer

Registered User
Mar 27, 2017
318
0
Southern England
Dear @Whisperer
I haven't logged onto the forum in a while, so have only just read your reply to my post. Thank you so much for taking your time to share your advice. You are so thoughtful and insightful. I do need to find a way to find a balance to my thoughts and not let the negativity overwhelm me. Some days I am preoccupied and I struggle to find any space in my head for anything else.
I need to make a conscious effort to tackle my negative thoughts and use for self compassion (I am my own worst enemy)! I own many books on meditation/mindfulness and have used guided imagery with some young people I work with and know how effective this is. Thank you again. You have not just given me food for thought. You have given me a feast!!!

Dear @Peace lily

You are more than welcome. This forum is a strange but wonderful place. Recently exchanged posts with a lady passionate about classical music. Now I find another soul who follows meditation practices, something I have done for years, my daily free gift to myself. I have never really told anyone about those aspects of my life. To stumble across two people who share one each of my private interests, in such an unusual circumstance, is a positive experience. Please enjoy your “feast“ and the future. All said and done this is still a beautiful world.
 

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