So it is Official

[Fugs]

The Dr at the OPMH clinic gave the results of my wife's PET-CT scan today, confirming an earlier Alzheimer's diagnosis. She is not yet 60!

It has been a bit of an emotional roller coaster over the last 12 months, with long periods of waiting for test results. I promised myself that I wouldn't get upset today, having been hit for 6 with the initial Alzheimer's diagnosis from a Psychologist 4 months go. But that didn't work!

I have stopped working as my wife couldn't take me being out all day. I was never sure what I was going to get back home to. Now that I am always around she is much happier.

I am finding this such a confusing disease, comparing what she can do with what she can't. Talking to her you (mostly) wouldn't know that there was something wrong. Certainly none of the neighbours appeared to have worked it out, and for now my wife doesn't want them to know. Just a select number of her friends.

I know that it is early days, and that things will get harder. (Her mother passed away with Alzheimer's less than 4 years ago, but that nightmare is a story for another day!) But for now, we are taking each day as it comes.

Lastly a question. My wife is on the the border between Mild and Moderate, so we have a choice of Donepezil or Memantime. Any recommendations?

 

[Izzy]

Welcome to the forum @Fugs.

I’m so sorry to read about your wife’s diagnosis. It really is heartbreaking and it’s not wonder you feel as you do.

My husband was on Donepezil for many years and was only moved on to Memantine towards the end of his time with Alzheimer’s. Others on the forum may have a different experience. I wondered if this factsheet would be of any help as it describes how the different drugs work -

https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_drug_treatments_for_alzheimers_disease.pdf

I’m glad you have found this forum. There will always be someone here to listen and offer support.

 

[Fugs]

Thank you @Izzy, that is very helpful.

 

[Xhanlbxx]

Hi Fugs,

I am really sorry to hear about your wife and her diagnosis.

My mother was in the same position in November 2018 when my father was finally diagnosed with young onset Alzheimer’s, he was 57 at the time .

For many years before the doctors put this down to stress as they cannot diagnose on a mild decline.

I would just like to say that everyone’s journey is different , there are myths the person always forgets you - this is not always true as we learnt this on our journey with dad .

Every person is different and we adapt our lives for that person so no decision you make will be the wrong decision because of the different paths .

Towards dads latter stage of Alzheimer’s the symptoms started to mirror the progression of most Alzheimer’s patients.

All I can say is make every memory count , go on holidays , do everything you enjoy while she is able to - this is exactly what we did .

Sending strength your way and I hope you have the right support from family , friends and professionals

 

[sapphire turner]

Hi Fugs I am so sorry that you are where you are but you are very welcome to join our club! talking point has been a real life saver for me.
Re choice between donepezil and memantine they work out differently for different people. But I would say that there are side effects of donepezil that seem to come up fairly often and yet are not mentioned in the drug information sheet. My husband was started on donepezil fairly soon after his diagnosis and quickly became angry, sullen and uncommunicative. That may have been partly due to him dealing with his diagnosis but the consultant changed him to memantine and it was like night going in to day, he was much more cheerful and calm. Feedback on here suggests that donepezil not uncommonly has this effect.
That’s not to say don’t try it, but just bear in mind if she goes a bit dark on you. Good luck with it all, sending love

 

[Poppy44]

Hi Fugs, I am so sorry to hear about your situation. As has already been said, everyone‘s journey is different, and yes, enjoy life now as much as you possibly can.
My late husband was diagnosed with early cognitive decline in 2017, and like your wife, you really wouldn’t have known that there was anything wrong. In fact he took himself to the GP saying “ I think that I’m losing my marbles”. After the usual GP verbal test he was referred to the Memory Clinic where he was prescribed Donepezil, with the warning that it night give him an upset stomach - which of course it did! After that he was prescribed Gelantamine ( which is apparently a bit more expensive), but which he tolerated much better. After a couple of years when things seemed to be getting rather worse he was in addition given Memantine , and for a while this had a remarkable effect, making him really quite cheerful - I kept thinking he was going to break out into song! Later, when disturbed nights became a problem he was given Zopiclone which proved an excellent sedative. He continued with all this medication which seemed to keep him quite stable until his very peaceful death from Hypo Delerium last year. In retrospect I think that we were very fortunate to have the support of a very helpful Consultant at the Memory Clinic who continued to prescribe and visit him every 6 months until he was admitted to a lovely Care Home for his last three months.
I do hope that you manage to get some similar help and support - it really does make all the difference.

 

[Fugs]

A challenging evening yesterday. I could see from the way that my wife was looking that she had what I call a worry bead, so I asked what the problem was. Oh boy, then she had a whole series of questions:
"Where did the boys come from?" - we have 2 sons.
"Did she (my wife) have to donate eggs?" - no entirely natural.
"Did anyone asked her what she thought about having them?" - she loves her boys but has a thing about nobody asking her opinion, which they do but she just forgets.
"What did my parents think?" - yes doted on them
"What did your patents think?" - see answer above
"Where was she in all of this?" - oh heavens!

And round and round, with vast quantities of tears. She can no longer remember the boys being born, and this was obviously troubling her. By the end she was looking daggers at me, and I have no idea why. She then settled to mindlessly watching the tennis until the last game was finished, and we went to bed.

She seemed more normal in the morning, although there were tears again, but not the floods of last night.

I'm not expecting any answers, I just needed to tell someone.

 

[SeaSwallow]

Oh @Fugs What an awful evening you had. I am pleased that it seems better today. Because your wife was so distressed in the evening I am wondering if she was sundowning. Unfortunately there is not a lot to help someone then, just what you were doing, trying to reassure and answer the questions.

 

[Sarasa]

This is what the forum is for @Fugs, just having someone to tell.
I too think it might have been sundowning, but it sounds like you answered her questions well. I don't know if the Compassionate Communication with the Memory Impaired thread will have some good tips for next time it happens.

 

[Fugs]

Third day in a row so perhaps it is sun downing, although the second day wasn't so bad. This evening I managed to get her out for a walk, and she seemed more cheerful, but it started up again when we got home. She brought a number of photos down stairs, so I suggested looking at photos on the laptop. (I have filed by year, there being much more once we got a digital camera) I started off with the year our eldest was born. It didn't go well, with her wailing that she had missed out as she can't remember. Just before giving it up as a bad job I skipped forward by 10 years. Suddenly she was naming their school friends and became cheerful, hence I was able to get her to bed in a good mood.
Of interest, we were living in a different part of the country when the boys were born, so I was wondering if the memory loss was associated with having lived elsewhere.
It breaks my heart to see her so distraught. 💔

 

[Butterflylady]

The Dr at the OPMH clinic gave the results of my wife's PET-CT scan today, confirming an earlier Alzheimer's diagnosis. She is not yet 60!

It has been a bit of an emotional roller coaster over the last 12 months, with long periods of waiting for test results. I promised myself that I wouldn't get upset today, having been hit for 6 with the initial Alzheimer's diagnosis from a Psychologist 4 months go. But that didn't work!

I have stopped working as my wife couldn't take me being out all day. I was never sure what I was going to get back home to. Now that I am always around she is much happier.

I am finding this such a confusing disease, comparing what she can do with what she can't. Talking to her you (mostly) wouldn't know that there was something wrong. Certainly none of the neighbours appeared to have worked it out, and for now my wife doesn't want them to know. Just a select number of her friends.

I know that it is early days, and that things will get harder. (Her mother passed away with Alzheimer's less than 4 years ago, but that nightmare is a story for another day!) But for now, we are taking each day as it comes.

Lastly a question. My wife is on the the border between Mild and Moderate, so we have a choice of Donepezil or Memantime. Any recommendations?

Hi there,
So sorry for you and your wife. Such an awful illness. First thing I noticed was your picture, an iris. That was my Mums name. She passed away from Altzheimers 2 years ago.
So you will be living with that memory of her Mum. All you can do is take one day at a time. Glad you are able to spend your time together now. Take care.

 

[Fugs]

I thought that I might provide an update, I know quite a gap.
I don't think in the end it was Sun Downing. I now suspect that it was her having a more lucid moment and worried about what she can't remember. I have learnt to dread these more lucid moments as she seems more aware of the awfulness of what is happening, and I can get several days of tears.
She still has confusion over who the parents to our boys are, but she loves them deeply and loves to see them. When I tell her that we are their Mummy and Daddy, she likes this, but I have been asked, "How do I know?"
Part of my solution is a large picture frame in the bedroom with a series of pictures of the 4 of us from when they were very young to now. She likes looking at it anyway. Whether it helps, I don't know.
I'm glad you like the flower Butterflylady.

 

[Grannie G]

This is so sad @Fugs

Are you yet at the stage when you would benefit from some help?

Carers: looking after yourself

Supporting a person with dementia can be positive and rewarding, but it can also be challenging. Looking after yourself is important for both you and the person you are supporting.

www.alzheimers.org.uk

 

[Fugs]

Thank you @Grannie G , I will have a read of this.

 

[tonebear]

The Dr at the OPMH clinic gave the results of my wife's PET-CT scan today, confirming an earlier Alzheimer's diagnosis. She is not yet 60!

It has been a bit of an emotional roller coaster over the last 12 months, with long periods of waiting for test results. I promised myself that I wouldn't get upset today, having been hit for 6 with the initial Alzheimer's diagnosis from a Psychologist 4 months go. But that didn't work!

I have stopped working as my wife couldn't take me being out all day. I was never sure what I was going to get back home to. Now that I am always around she is much happier.

I am finding this such a confusing disease, comparing what she can do with what she can't. Talking to her you (mostly) wouldn't know that there was something wrong. Certainly none of the neighbours appeared to have worked it out, and for now my wife doesn't want them to know. Just a select number of her friends.

I know that it is early days, and that things will get harder. (Her mother passed away with Alzheimer's less than 4 years ago, but that nightmare is a story for another day!) But for now, we are taking each day as it comes.

Lastly a question. My wife is on the the border between Mild and Moderate, so we have a choice of Donepezil or Memantime. Any recommendations?

I realise it's no help whatever but my wife has vascular dementia she is very relaxed and has no idea of what she has, she says it's old age, she is on blood thinners and blood pressure tabs but none of the dementia drugs. About 70% of the time she has no idea who i am or why i'm here but she still has a sense of humour. So I think the best you can do for your sanity is try very hard to see the funny side of what she does and says, don't take offence, they have no idea that they may have hurt you, and just take it as it comes. Oh and clean up after them. Good luck and get a break everyso often.

 

[Fugs]

I have posted elsewhere that I now help my wife with her baths. This started just after Christmas when her phaffing indicated that undertaking all the steps was beyond her. What started out as being a bit awkward is becoming more routine, and has now extended to helping her dress/ undress in the morning and evening. In addition I now blow dry her naturally curly hair in order to get it straight after being washed. (I am slowly getting better, but it is not easy). After the last 2 baths when presented with her bra she had a blank look, and didn't seem to know what to do with it. 1 more step down I guess.

 

[Fugs]

I feel increasingly that the spark that is my wife is disappearing. I can't really tell you what that spark is, but it seems noticeable by its absence at times.

 

[Grannie G]

I feel increasingly that the spark that is my wife is disappearing. I can't really tell you what that spark is, but it seems noticeable by its absence at times.

That’s dementia 😟

 

[RM3]

I feel increasingly that the spark that is my wife is disappearing. I can't really tell you what that spark is, but it seems noticeable by its absence at times.

Hello @Fugs - I don’t have anything helpful to say. I just wanted to send support and to say I’m sorry for what you and so many are going through x

 

[Bevhar]

I feel increasingly that the spark that is my wife is disappearing. I can't really tell you what that spark is, but it seems noticeable by its absence at times.

I’m so sorry I know exactly the same My husband has been diagnosed with Alzheimer’s I’m really struggling today I feel lonely I went to a carers meeting today My husband was at an Alzheimers group he goes to on his own I love my husband dearly But I’m feeling so alone I have 2 wonderful daughters I live in Wiltshire & the youngest lives in Cardiff the other daughter is about 15 mins drive but she’s a single mum of 2 so I really try not to involve them at the moment My husband fainted about 6 weeks ago & knocked himself out It was awful & he was in hospital for a week they are still working on what was wrong Anyway I vowed if he was ok & came home I would be calm & happy but it’s so hard I’m sorry you’ve had to give up work Have you & your wife joined any groups We have & it does help Otherwise you can just sit at home & mope Have you got family near to visit for a change of scenery I was never one for joining groups but I’m finding them beneficial Also we haven’t got them in our area but the Admiral nurses are amazing I’ve contacted them on many occasions This forum is so informative & I find I can come on & rant & everyone understands