Support for our son

DaisyCat

Registered User
Dec 2, 2017
79
0
Thankyou that will be appreciated. I'm not sure if been on this forum is helping or not. I think it is making me face facts a little to much. I've read through a few of the threads and it is all looking very scary. I'm sure this is just me being in shock and struggling with my emotions. When I take a step back I realise I need the knowledge and support that a place like this can give me but this is really tough.

Hi Laura,
I'm new here too. I'm quite a bit younger than my OH and have an eleven year old. Would love to find support for our son as he is finding his own frustration hard to deal with some days.
I agree with you that it all feels very scary. The changes within relationships - family dynamic is worrying too.

*Edit: Post moved from Welcome Thread*
 
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Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Thankyou that will be appreciated. I'm not sure if been on this forum is helping or not. I think it is making me face facts a little to much. I've read through a few of the threads and it is all looking very scary. I'm sure this is just me being in shock and struggling with my emotions. When I take a step back I realise I need the knowledge and support that a place like this can give me but this is really tough.
Exactly the same thing happened to me when I first joined the forum. I read, got scared and didn’t come back for a good few weeks! But there are so many of us here who have loved ones at various stages, so you won’t identify with everyone, but you will find help with the things that you face along the way. It is early days for you, having a diagnosis doesn’t mean you are immediately going to ‘lose’ your husband. Nothing is very different to how it was before diagnosis, except now you know. And knowledge is good. There will be things you can do to help slow progression. My husband goes to a Cogs club. (Cognitive stimulation) and I have seen a big improvement in him.
Just drop in as and when you want to.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent

Laura40

Registered User
Dec 10, 2017
154
0
England
Hi Daisycat,
Yes my youngest is 13 and he is really struggling with it all. He is spending less and less time with my OH it is all just so alien to him, hard enough being a teenager I think.
My older boy is a real strength he is at uni but really helps as he still lives at home and will cook meals etc when I'm out, which is helpful as earlier in the year my OH lost loads of weight which we discovered was partially caused by him missing lunches.
I'm very reluctant on them being too involved however, I just think they are too young and I want to protect them from it as much as possible. I don't know if that is the best thing to do I think it
Hello @Laura40 and @Daisy Cat

I hope the following links might be of help to you and your children.


You may find being on Talking Point scary and no one could blame you. However it is an amazing source of help and support so I hope you use it for this purpose and benefit from it.
Hi thanks,
I had a look at these last week and printed out for my husband to read with me, he explained he wanted to talk to our youngest (13 ) himself, then he asked me later if I could do it with him then didn't want to do it at all. I spoke to my son about it as he already knows, we all do, it's just my husband is unaware of the differences that everybody else can see. My son said he didn't want to talk about it with him. I think they both just need to pretend nothing has changed so I left it at that.
I think at the moment the practicalities are overwhelming ( mum, wife, carer, my job) when I have my rational head on I will just get on with it. However, this morning was a bad day. This afternoon will be better because I am a practical person and will make it better. A friend visited me and brought with her reassurment that Id have help and that I needed to organise and to ensure I looked after myself.
Then I watched my husband arrive home from the gym, he drove up the kerb around 10 times before he managed to park. I'm amazed passing traffic didn't hit the car. So I called the gpsurgery to find out when we would be getting our memory clinic app as the neurologist at the hospital explained that is the next step. Weve had no formal diagnosis other than the neurologist telling us it is early onset dimentia and I know I need to act regarding the dvla etc but nothing at this point seems formal. The surgery told me I need to call the hospital and it just goes back and forth! It seems to have all been delayed because the last few gp apps he always passes their tests, but he's really clever and some of the questions are the simplest you can imagine, but at the last one he had really struggled, he couldn't remember words, stopped mid sentence got very confused around his subject area ( he's an academic) Anyway tomorrow will be a better day. And again thanks as I know through reading this forum there are a lot of very amazing people going through the same and worse. I think this rambling is just another method for me to cope, which is barmy because I don't do social media this is a FIRST! Right.... back to the real world...
 

DaisyCat

Registered User
Dec 2, 2017
79
0
Hi Daisycat,
Yes my youngest is 13 and he is really struggling with it all. He is spending less and less time with my OH it is all just so alien to him, hard enough being a teenager I think.
My older boy is a real strength he is at uni but really helps as he still lives at home and will cook meals etc when I'm out, which is helpful as earlier in the year my OH lost loads of weight which we discovered was partially caused by him missing lunches.
I'm very reluctant on them being too involved however, I just think they are too young and I want to protect them from it as much as possible. I don't know if that is the best thing to do I think it

Hi thanks,
I had a look at these last week and printed out for my husband to read with me, he explained he wanted to talk to our youngest (13 ) himself, then he asked me later if I could do it with him then didn't want to do it at all. I spoke to my son about it as he already knows, we all do, it's just my husband is unaware of the differences that everybody else can see. My son said he didn't want to talk about it with him. I think they both just need to pretend nothing has changed so I left it at that.
I think at the moment the practicalities are overwhelming ( mum, wife, carer, my job) when I have my rational head on I will just get on with it. However, this morning was a bad day. This afternoon will be better because I am a practical person and will make it better. A friend visited me and brought with her reassurment that Id have help and that I needed to organise and to ensure I looked after myself.
Then I watched my husband arrive home from the gym, he drove up the kerb around 10 times before he managed to park. I'm amazed passing traffic didn't hit the car. So I called the gpsurgery to find out when we would be getting our memory clinic app as the neurologist at the hospital explained that is the next step. Weve had no formal diagnosis other than the neurologist telling us it is early onset dimentia and I know I need to act regarding the dvla etc but nothing at this point seems formal. The surgery told me I need to call the hospital and it just goes back and forth! It seems to have all been delayed because the last few gp apps he always passes their tests, but he's really clever and some of the questions are the simplest you can imagine, but at the last one he had really struggled, he couldn't remember words, stopped mid sentence got very confused around his subject area ( he's an academic) Anyway tomorrow will be a better day. And again thanks as I know through reading this forum there are a lot of very amazing people going through the same and worse. I think this rambling is just another method for me to cope, which is barmy because I don't do social media this is a FIRST! Right.... back to the real world...

Hello @Laura40 and @Daisy Cat

I hope the following links might be of help to you and your children.



You may find being on Talking Point scary and no one could blame you. However it is an amazing source of help and support so I hope you use it for this purpose and benefit from it.

Thank you @Grannie G for the links, I did use them a while ago.
 

DaisyCat

Registered User
Dec 2, 2017
79
0
Hi Daisycat,
Yes my youngest is 13 and he is really struggling with it all. He is spending less and less time with my OH it is all just so alien to him, hard enough being a teenager I think.
My older boy is a real strength he is at uni but really helps as he still lives at home and will cook meals etc when I'm out, which is helpful as earlier in the year my OH lost loads of weight which we discovered was partially caused by him missing lunches.
I'm very reluctant on them being too involved however, I just think they are too young and I want to protect them from it as much as possible. I don't know if that is the best thing to do I think it

Hi thanks,
I had a look at these last week and printed out for my husband to read with me, he explained he wanted to talk to our youngest (13 ) himself, then he asked me later if I could do it with him then didn't want to do it at all. I spoke to my son about it as he already knows, we all do, it's just my husband is unaware of the differences that everybody else can see. My son said he didn't want to talk about it with him. I think they both just need to pretend nothing has changed so I left it at that.
I think at the moment the practicalities are overwhelming ( mum, wife, carer, my job) when I have my rational head on I will just get on with it. However, this morning was a bad day. This afternoon will be better because I am a practical person and will make it better. A friend visited me and brought with her reassurment that Id have help and that I needed to organise and to ensure I looked after myself.
Then I watched my husband arrive home from the gym, he drove up the kerb around 10 times before he managed to park. I'm amazed passing traffic didn't hit the car. So I called the gpsurgery to find out when we would be getting our memory clinic app as the neurologist at the hospital explained that is the next step. Weve had no formal diagnosis other than the neurologist telling us it is early onset dimentia and I know I need to act regarding the dvla etc but nothing at this point seems formal. The surgery told me I need to call the hospital and it just goes back and forth! It seems to have all been delayed because the last few gp apps he always passes their tests, but he's really clever and some of the questions are the simplest you can imagine, but at the last one he had really struggled, he couldn't remember words, stopped mid sentence got very confused around his subject area ( he's an academic) Anyway tomorrow will be a better day. And again thanks as I know through reading this forum there are a lot of very amazing people going through the same and worse. I think this rambling is just another method for me to cope, which is barmy because I don't do social media this is a FIRST! Right.... back to the real world...

Laura, my son is finding it difficult. I'm trying to encourage him not to be critical of his dad constantly... he picks up on the wrong words, grammar and the repetition etc.
We're in a similar situation with the driving, although my OH seems okay at the minute (I know it will change).
The GP hasn't told him that he must quit driving - we've discussed it a few times - but it's a real
bone of contention. He feels that he's fine and that it would kill him to give up. He feels life wouldn't be worth living if he had to give up.
I'm really not looking forward to the time he has to give up.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,004
0
72
Dundee
@DaisyCat Plrase ignore me if you’ve already done this. Your son’s school should be able to seek out some kind of support for him. I’m not so sure of the English school system as I’m in Scotland. If he’s in secondary school I’d imagine there would a form teacher or pastoral support depute head who might be able to help. As I say you may have already talked to the school but I thought I’d mention it. It’s especially important as it may have an impact on your son’s school work.
 

DaisyCat

Registered User
Dec 2, 2017
79
0
@DaisyCat Plrase ignore me if you’ve already done this. Your son’s school should be able to seek out some kind of support for him. I’m not so sure of the English school system as I’m in Scotland. If he’s in secondary school I’d imagine there would a form teacher or pastoral support depute head who might be able to help. As I say you may have already talked to the school but I thought I’d mention it. It’s especially important as it may have an impact on your son’s school work.

Thank you.
 

Laura40

Registered User
Dec 10, 2017
154
0
England
Hi,
Well a month or so since my last post. My son still doesn't want to discuss anything however my husband has now made the decision to stop driving following crashing into a Porsche! Nobody hurt thankfully and really good that he made the decision himself. This did get my son talking about how we could part exchange both our cars and get a better one! Typical response from a 14 year old I think....
 

DaisyCat

Registered User
Dec 2, 2017
79
0
Hi,
Well a month or so since my last post. My son still doesn't want to discuss anything however my husband has now made the decision to stop driving following crashing into a Porsche! Nobody hurt thankfully and really good that he made the decision himself. This did get my son talking about how we could part exchange both our cars and get a better one! Typical response from a 14 year old I think....
Glad that you're all safe! Go out with a bang! as they say... My OH is still driving, but because he's been feeling unwell recently, he's been staying in whilst my son and I go out. However, things will inevitably change sooner than he thinks. He's just been diagnosed with chronic kidney failure! This is due to him having an enlarged prostate gland and over many years causing backflow of urine. The scan results (which we received yesterday) show that his right kidney is gone altogether and the left one has about 30% function! The doctor wanted to keep him in the hospital overnight to fit a catheter, but my OH refused. Even after going to the loo, an ultrasound scan showed that he had nearly 700ml of liquid in his bladder, yet he didn't feel the need to go to the loo! So, we now have a dilemma, he's refusing treatment (never stayed overnight in a hospital in his 67 years!) without treatment the doctor said he might manage another year.:(
 

Laura40

Registered User
Dec 10, 2017
154
0
England
Glad that you're all safe! Go out with a bang! as they say... My OH is still driving, but because he's been feeling unwell recently, he's been staying in whilst my son and I go out. However, things will inevitably change sooner than he thinks. He's just been diagnosed with chronic kidney failure! This is due to him having an enlarged prostate gland and over many years causing backflow of urine. The scan results (which we received yesterday) show that his right kidney is gone altogether and the left one has about 30% function! The doctor wanted to keep him in the hospital overnight to fit a catheter, but my OH refused. Even after going to the loo, an ultrasound scan showed that he had nearly 700ml of liquid in his bladder, yet he didn't feel the need to go to the loo! So, we now have a dilemma, he's refusing treatment (never stayed overnight in a hospital in his 67 years!) without treatment the doctor said he might manage another year.:(
That's not good! Is he listening to anybody else at all?
 

DaisyCat

Registered User
Dec 2, 2017
79
0
That's not good! Is he listening to anybody else at all?
I managed to get him to the GP. The GP was lovely and spent around an hour trying to explain everything and the consequences of not having any treatment.
I took my son out for the day yesterday, left OH to ponder everything. But last night he was just as adamant that he's had enough... I feel like crying all the time, but can't.
 

Laura40

Registered User
Dec 10, 2017
154
0
England
Could this be his extreme way of taking control over what is happening to him? I know our house move is upsetting me as I was looking at bungalows thinking this could make our life together easier and longer with things to come and my OH is adamant that he doesn't like any of them and has chosen a house with very steep stairs! This led to our conversation around later care and his opening up to me about not wanting my involvement in that part. I didn't know what to say, he watched him mum and aunt both with this condition and knows exactly what is coming, more than me.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I am going to be very revolutionary here and hope I do not offend anyone.

@Laura40 - If your OH is very aware of what is to come in the end stages of dementia and does not want you to witness it, perhaps him refusing treatment is his way of making sure this doesnt happen to him.

What will the treatment for his kidney failure involve? Will he be OK with tablets, or will it involve surgery and/or dialysis?
Surgery and dialysis are both invasive treatments and often PWDs dont cope with things like that well. It reminds me very much about the discussions about whether a PWD who develops cancer would be better off having treatment or not.
 

Laura40

Registered User
Dec 10, 2017
154
0
England
Hi Canary,
No offence taken. But you have muddled us up a little. Daisy's Oh is the one with Kidney failure. Mine is just refusing a bungalow but I agree and I think this is what I was inferring. My husband is very aware and has a very good understanding of our possible future hence his reasoning for refusing the bungalow options and has told me he doesn't want me and the kids dealing with his later care.
I was suggesting to Daisy that this could also be why her OH is refusing help for his kidney issues.
We both have the teenage children which is why this feels so rotten.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi Canary,
No offence taken. But you have muddled us up a little. Daisy's Oh is the one with Kidney failure. Mine is just refusing a bungalow but I agree and I think this is what I was inferring. My husband is very aware and has a very good understanding of our possible future hence his reasoning for refusing the bungalow options and has told me he doesn't want me and the kids dealing with his later care.
I was suggesting to Daisy that this could also be why her OH is refusing help for his kidney issues.
We both have the teenage children which is why this feels so rotten.
Ah, sorry for the confusion.
 

DaisyCat

Registered User
Dec 2, 2017
79
0
I am going to be very revolutionary here and hope I do not offend anyone.

@Laura40 - If your OH is very aware of what is to come in the end stages of dementia and does not want you to witness it, perhaps him refusing treatment is his way of making sure this doesnt happen to him.

What will the treatment for his kidney failure involve? Will he be OK with tablets, or will it involve surgery and/or dialysis?
Surgery and dialysis are both invasive treatments and often PWDs dont cope with things like that well. It reminds me very much about the discussions about whether a PWD who develops cancer would be better off having treatment or not.
Hi Canary,
It's my OH with the kidney failure. The treatment options are all invasive in one way or another. There's no guarantee that it will be successful either. I know that he won't cope with an operation. He's never stayed in a hospital overnight. He needs a new shoulder - desperately - but will not have the op! Even though we've gone over and over and over the options, he still doesn't see the urgency. He doesn't see the point to his life being dragged on only for the dementia to get worse... which I understand. And, yes he does like to be in control:rolleyes:.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
He doesn't see the point to his life being dragged on only for the dementia to get worse... which I understand.
I can fully understand this too.
And perhaps this might be the kindest option given the invasiveness of the treatment, the possible poor outcome and the way he probably wouldnt cope. Just my opinion.
 

DaisyCat

Registered User
Dec 2, 2017
79
0
Hello is he registered as a young carer? They can support emotionally and give access to groups and also give one off grants to access something for him too.
Thanks, but no he isn't registered as a young carer.
 

DaisyCat

Registered User
Dec 2, 2017
79
0
Could this be his extreme way of taking control over what is happening to him? I know our house move is upsetting me as I was looking at bungalows thinking this could make our life together easier and longer with things to come and my OH is adamant that he doesn't like any of them and has chosen a house with very steep stairs! This led to our conversation around later care and his opening up to me about not wanting my involvement in that part. I didn't know what to say, he watched him mum and aunt both with this condition and knows exactly what is coming, more than me.
Hi Laura,
Yes, I think you're right, it is his way of being in control. He's always hated the way doctors just assume that you'll do as they say without question. He doesn't see the point in dragging it all out to only end up with the same outcome. I do understand and it may be a blessing in disguise but it's so difficult!