Alzheimers; a right bastard

[Schmoe]

My Mum has has assessments done. Bloods taken this morning. CT Scan being booked. Looks to be Alzheimers. All the signs. Thankfully my Dad still has his marbles but they are both late 70s. Hard to see it but it happens. Onwards. Upwards. Looks like a lot of journeys between Cambridgeshire and Wiltshire.

Sorry to hear this, but I will now hopefully give you advice that isn’t needed.
Please make sure that you or someone gets Lasting power of attorney, medical and financial, this will make sure that their wishes will be accommodated.

If possible, and if she’s willing, get her to go to the memory clinic, they might be able to help.

If your Dad is anything like mine, ( and I’m sure he is), he is about to work himself into the ground looking after his lovely wife. You need to support him, more than her. This might sound wrong, but she is going to slowly sink into another world, he’s going to witness his love slowly leaving him, be there for them both, but especially him.

My only other advice, is look after yourself or whoever is the main carer, this is a long and difficult road.

One last thing, take lots of pictures, I wish I had, Mum left us, and I don’t have enough pictures.

 

[Grownup_Rafbrat]

My Mum has has assessments done. Bloods taken this morning. CT Scan being booked. Looks to be Alzheimers. All the signs. Thankfully my Dad still has his marbles but they are both late 70s. Hard to see it but it happens. Onwards. Upwards. Looks like a lot of journeys between Cambridgeshire and Wiltshire.

Sorry to hear that, Sid. Look after your Dad and yourself...

 

[ancient]

My Mum has has assessments done. Bloods taken this morning. CT Scan being booked. Looks to be Alzheimers. All the signs. Thankfully my Dad still has his marbles but they are both late 70s. Hard to see it but it happens. Onwards. Upwards. Looks like a lot of journeys between Cambridgeshire and Wiltshire.

When I started this several years ago there seemed all the time in the world to get things in place because it takes years to develop and there's no rush is there?

But there is some urgency. Power of attorney I had to fight my father for and involved much cajoling and in the end another trip to France and an appearance in a French court and financial problems to be sorted in the Isle of Man.

As the past 500 odd posts will show, it's going to be bloody awful for you but the more you can put in place the less bloody awful it's going to be. I'm at the end stage now and things are pretty simple: my Mum never talks or shows any expression any more and my father has another lady companion. We wait for release.

You have my absolute sympathy. I found this place good for a rant and a release of frustration. Feel free to let rip, we're all on your side.

 

[socialdespatch]

Bizarrely my Mum is still testing positive for Covid after 2 weeks but according to my Dad, she is showing no symptoms and her lungs are clear.

Whether this is actually true is another question. He sometimes forgets that I am all grown up and keeps any bad news from me.

How long we can expect to wait before she is given the All Clear I have no idea. Frankly I thought she'd be gone by now being her age and very week and tottery.

It isn't unusual for a test to come back positive for up to three months after the original infection. Some people continue to shed the RNA, but aren’t infectious, that should all be done and dusted 10 days after the stat of symptoms.

 

[socialdespatch]

Well, this was going to be my first post in this thread, but the previous one got there first.

Dad was diagnosed with dementia (vascular) about 8 years ago, unfortunately he wasn’t told (or he forgot) and after knowing something was amiss for a while I found out about the diagnosis just before Christmas when it suddenly worsened. He’s also got a terminal cancer diagnosis though Covid has meant that we have no idea what time we have left with him.

His behaviour has become increasingly random and there is no reasoning using logic as he’s got completely different memories and understanding of what is going on around him. Unfortunately it has enhanced his unreasonable streak and he’s become so egocentric that it’s like dealing with a teenager or toddler, he even leaves a trail of rubbish behind him whilst he watches me tidy up.

His capacity changes daily, on one of his better days we got the LPA’s for Health and Finances sorted out, just waiting for those to come back now. I’ve ended up moving in with him, whilst trying to hold down a job and not become single.

 

[Schmoe]

Well, this was going to be my first post in this thread, but the previous one got there first.

Dad was diagnosed with dementia (vascular) about 8 years ago, unfortunately he wasn’t told (or he forgot) and after knowing something was amiss for a while I found out about the diagnosis just before Christmas when it suddenly worsened. He’s also got a terminal cancer diagnosis though Covid has meant that we have no idea what time we have left with him.

His behaviour has become increasingly random and there is no reasoning using logic as he’s got completely different memories and understanding of what is going on around him. Unfortunately it has enhanced his unreasonable streak and he’s become so egocentric that it’s like dealing with a teenager or toddler, he even leaves a trail of rubbish behind him whilst he watches me tidy up.

His capacity changes daily, on one of his better days we got the LPA’s for Health and Finances sorted out, just waiting for those to come back now. I’ve ended up moving in with him, whilst trying to hold down a job and not become single.

This thread was a godsend for me. Use it to rant and off load. Everyone on here knows why.

Sadly, I think I might be on here again for my dad.

 

[pimpernel]

This thread was a godsend for me. Use it to rant and off load. Everyone on here knows why.

Sadly, I think I might be on here again for my dad.

Do. You can't be surprised with the response, there are a lot of us who have either gone before or following hard on your heels.

 

[Humble Tiller]

Well, this was going to be my first post in this thread, but the previous one got there first.

Dad was diagnosed with dementia (vascular) about 8 years ago, unfortunately he wasn’t told (or he forgot) and after knowing something was amiss for a while I found out about the diagnosis just before Christmas when it suddenly worsened. He’s also got a terminal cancer diagnosis though Covid has meant that we have no idea what time we have left with him.

His behaviour has become increasingly random and there is no reasoning using logic as he’s got completely different memories and understanding of what is going on around him. Unfortunately it has enhanced his unreasonable streak and he’s become so egocentric that it’s like dealing with a teenager or toddler, he even leaves a trail of rubbish behind him whilst he watches me tidy up.

His capacity changes daily, on one of his better days we got the LPA’s for Health and Finances sorted out, just waiting for those to come back now. I’ve ended up moving in with him, whilst trying to hold down a job and not become single.

Plenty of advice and experience to be had on this thread, and support. It is a shit thing to go through, posting on here how shit it was for me, made it a bit less so.

 

[RTU'd]

My Mum has the early stages off it.
All very sad to see mum not know people.

 

[sidsnot]

Sorry to hear this, but I will now hopefully give you advice that isn’t needed.
Please make sure that you or someone gets Lasting power of attorney, medical and financial, this will make sure that their wishes will be accommodated.

If possible, and if she’s willing, get her to go to the memory clinic, they might be able to help.

If your Dad is anything like mine, ( and I’m sure he is), he is about to work himself into the ground looking after his lovely wife. You need to support him, more than her. This might sound wrong, but she is going to slowly sink into another world, he’s going to witness his love slowly leaving him, be there for them both, but especially him.

My only other advice, is look after yourself or whoever is the main carer, this is a long and difficult road.

One last thing, take lots of pictures, I wish I had, Mum left us, and I don’t have enough pictures.

sorry to hear that. Mine was diagnosed few years ago and dad tried to look after her at home even when she was diagnosed with parkinsons. They are now both in a care home - dad had 2 falls in one day so I couldn't wait till he realised how frail he is. I hadn't realised how bad his mental state is though

Get LPA if you haven't already got it - it will make the practicalities easier

Once she has had tests then we will be looking in depth at all options. I’ve spoken to the nurse who came the other day to carry out an assessment and she said there is plenty of help and that all we need to is phone. It is a big relief to know that.

 

[sidsnot]

Sorry to hear that, Sid. Look after your Dad and yourself...

Thanks GR.

 

[sidsnot]

My Mum has the early stages off it.
All very sad to see mum not know people.

It is. Take care of her and hope you manage ok

 

[sidsnot]

This thread was a godsend for me. Use it to rant and off load. Everyone on here knows why.

Sadly, I think I might be on here again for my dad.

One of the reasons I appreciate this site is because you can rant and rave. People will take the piśs but those same people will be there to help you in a heartbeat.

 

[sidsnot]

For me it’s seeing the people who dragged me up now so fragile and vulnerable when they once seemed invincible.
Thankyou for the words of advice and suchlike. But please for the love of God help me retain my humour with your usual expertise.

 

[Norfolkred1]

sorry to hear that. Mine was diagnosed few years ago and dad tried to look after her at home even when she was diagnosed with parkinsons. They are now both in a care home - dad had 2 falls in one day so I couldn't wait till he realised how frail he is. I hadn't realised how bad his mental state is though

Get LPA if you haven't already got it - it will make the practicalities easier

I totally agree. I know it's going to be a long battle especially with your conscience along with your Dads will. My Father was adamant that he could look after my mum and it took a lot of battles for him to see he could not manage especially with the violence that came later on. We eventually convinced him that a home was the best place for her and him in the long run.

 

[ancient]

Before Mum got properly bad with her dementia, I would often be greeted by a ready made argument that would take a long time to calm her down from. As things worsened, I would often walk in to be met with various unpleasantries. If I perceived that the situation was beyond immediate salvation, I would walk out the back door, and come in again, to then be greeted like a conquering hero.
Finding her eating a bar of saddle soap was a bit of a test though, I must admit.

Finding Mum in tears one morning was a low point. She was trying to put her trousers on but had got one leg inside out and couldn't work out what the problem was. There were plenty to be honest. Finding Dad wiping my Mum's sh+t of her dressing table stool was pretty bad as well.

 

[Olrence]

My Mum has the early stages off it.
All very sad to see mum not know people.

That's where I'm at with my mum. Thankfully I have a brother locally who insists on shouldering most of the day-to-day. But it's a bugger, as we all know where this is heading.

 

[Slime]

For me it’s seeing the people who dragged me up now so fragile and vulnerable when they once seemed invincible.
Thankyou for the words of advice and suchlike. But please for the love of God help me retain my humour with your usual expertise.

It’s a horrible thing to deal with.
Seeing parents essentially repeatedly ‘grieve or learn things for the first time’* is very hard to deal with, but seeing them brighten up and be able to clearly some long term memories is a bonus to treasure.

*towards the end of his life my father was in a nursing home.
I would visit him in his room and he would ask ‘is your mum downstairs’ as he thought he he was living at home, and in his bedroom.
I would often just say yes, but the times I had to point out where he was he was essentially learning that ‘fact’ for the first time, no matter how many times I had to tell him.
Grieving is the same issue, a person with dementia might ‘find out for the first time’ a sibling or partner had died every time they ask about them.

Get yourself a strategy for dealing with this in advance. I hated telling lies to my dad, but it saved him from agonising over the things he had forgotten. It was much easier him him when I told him ‘yes, mum is downstairs’.

Keep your chin up, it’s a crap situation, but live for the good times and memories

 

[Slime]

@sidsnot

Apologies if I’ve missed this in the thread, but a good idea is to make a book of memories.
Find photos of family, pets, houses or cars etc, print them off and stick them in a book explaining what they are. Write in the book in large clear print.

If there is a pic of two kids, Janet and John as an example, don’t write Janet and John under the pic, but put something like ‘My children, Janet born on xx xx xxxx and John born on Xx xx xxxx, Janet likes playing chess and John loved riding his bike, We used to go on holiday together to xxxxxxxx.

If there was a pic of a cat put something like ‘This is my cat fluffy’ I got him as a kitten and he lives with me at xxxxxwhatever addressxxx, he liked to sleep on the bed and I love him’.

You need to add as big a descriptor as possible, as the person with dementia may not know who or what the pics have to do with them, but pics can trigger long term memories.

If someone with dementia needs care from people outside the family then write a pen portrait for carers to read. A pen portrait can contain info such as siblings, spouse, pets, likes, dislikes, favourite music or food, plus a work/career history. The pen portrait helps the carer see the person as a real person who had a real life rather than just a shell of a person.

 

[sidsnot]

It’s a horrible thing to deal with.
Seeing parents essentially repeatedly ‘grieve or learn things for the first time’* is very hard to deal with, but seeing them brighten up and be able to clearly some long term memories is a bonus to treasure.

*towards the end of his life my father was in a nursing home.
I would visit him in his room and he would ask ‘is your mum downstairs’ as he thought he he was living at home, and in his bedroom.
I would often just say yes, but the times I had to point out where he was he was essentially learning that ‘fact’ for the first time, no matter how many times I had to tell him.
Grieving is the same issue, a person with dementia might ‘find out for the first time’ a sibling or partner had died every time they ask about them.

Get yourself a strategy for dealing with this in advance. I hated telling lies to my dad, but it saved him from agonising over the things he had forgotten. It was much easier him him when I told him ‘yes, mum is downstairs’.

Keep your chin up, it’s a crap situation, but live for the good times and memories

In my case chins. Put a bit of beef on since leaving
But thankyou