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I suspect my father may be struggling with dementia...

canary

Registered User
Feb 25, 2014
12,216
South coast
I hate the eyeballing method of testing which leads to the diagnosis of LFM (Looks Fine to Me)

Can you contact that DN, who sounds to be on the ball, tell her what happened and ask what you can do now?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,806
Bristol
Sorry you are having such a stressful time AztecCamera87. Have you had a carers assessment and a care needs assessment. If you are reaching breaking point and the GP is not helping then tell social services the full story and ask for external carers to come in and help. A referral to the bladder and bowel service may be helpful too, but I hope there is a more helpful GP at the surgery who can make that for you.
 

Rosettastone57

Registered User
Oct 27, 2016
1,215
Useless GPs...

This morning the DN tells me dad had done that thing again, where he pooed his pants and left the poo in his breakfast bowel. She also commented on his odd shuffle and stopping when he walked. She thought it seemed neurological.

She arranged a home visit for the GP today! I said I needed to book the day off work as we had no idea about the time of day, the GP surgery were useless and just said it would be any time before 5.

The GP came at half two. And was just useless. I explained all concerns. And all he said was, "well your dad seems fine". I explained the memory clinic. I explained the memory, confusion, the incontinence the uncontrollable night sweats... Everything.... And all he said was your dad needs to go to physio at the hospital and someone will need to take him. There is no reason the walking problems are neurological... Like ***! I had to take the day off work at the last minute... Again... And this useless waste of a GP comes and acts like it's all just an inconvenience. I'm livid.
I don't know what to say, other than is there another GP at the practice? Totally frustrating
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I totally sympathise, have / am battling with unhelpful GP
It’s horrendous
Have kept emailing & a paper trail to all involved in Mums care.
Ring Alzheimer’s help line or email Talking Point for advice - it was the best thing I ever did ! So much help & advice
(((((((((Hugs)))))))))))
 

a8492

New member
Jul 24, 2019
3
Haven't been on here in a while - AztecCamera87, how are you doing? You mentioned a while ago feeling generally run down etc. How are you feeling now? Have you got hold of Carer's Support in your area? And made time for yourself (absolutely essential)?

I feel people vastly underestimate just how much the carer suffers, for want of a better word.
 

AztecCamera87

Registered User
Mar 12, 2019
150
Hi everyone. Not really been around so much the last few weeks. Last week either me or my sister was home with my dad (various Appointments and other things). Today was the first day where he had really been home alone for the large part of the day (except for the DN and carers).

Sadly it was a bit of a failure. My sister got home and dad was wearing one shoe and stuck holding his frame and trembling by the door. she managed to get him food and sat back down. She went out for a couple hours after he was settled again and when she got home he had packed his bag with odd random things off from the room as he thought he wasn't at home. He has been doing this for the last few days or so (but it only just started last week).

Got confirmation he doesn't have a UTI and his blood work is fine. We have the memory clinic nurse visiting on Friday morning. We have both arranged work around this, but means we are both working longer hours on different days this week.

I would be very surprised if there wasn't a dementia diagnosis of some kind. All other possible scenarios have been shown not to be the case. Dad pooed himself three times on Sunday (only happens when there are no carers around!!!). Today no poo. Worried he will have a big accident tomorrow with no one around.... But I got to work (it's about to get really busy in H.E. this week!!).

Hopefully my dad will get through to Friday. It's such a shame diagnosis has taken so long. btw, no improvements with the legs, physio has been and gone we try the excercises every day, but dad finds them confusing. But we try.
 

AztecCamera87

Registered User
Mar 12, 2019
150
Haven't been on here in a while - AztecCamera87, how are you doing? You mentioned a while ago feeling generally run down etc. How are you feeling now? Have you got hold of Carer's Support in your area? And made time for yourself (absolutely essential)?

I feel people vastly underestimate just how much the carer suffers, for want of a better word.
I'm ok, just stressed and stretched and run down. It's difficult trying to look after everyone! Its also difficult dealing with my dads GP surgery, when they insist on calling him, despite them fully knowing what's going on (his actual GP isn't bad though). But I will be okay (dad though, I don't know).
 

AztecCamera87

Registered User
Mar 12, 2019
150
Hi everyone.

Firstly, thank you for all the advice which everyone has offered me since I started this thread in March this year.

Today, my dad has been diagnosed with Alzheimer's Disease, we don't know really how far along he is with this illness. However, the memory clinic nurse, from speaking to me and my sister at the assessment, suspects he may have been struggling with symptoms for the last few years, and recent traumas may have progressed things. We were told the CT Scan did not show any damage to suspect it was vascular dementia (which is what the nurse had suspected at first, but the consultant disagreed) or mixed.

So what does it mean from here? I'm not certain really. They are going to start my dad on Donepezil to help ease symptoms and slow progression.

So there we go....
 

Suzy C

Registered User
Sep 16, 2019
41
Useless GPs...

This morning the DN tells me dad had done that thing again, where he pooed his pants and left the poo in his breakfast bowel. She also commented on his odd shuffle and stopping when he walked. She thought it seemed neurological.

She arranged a home visit for the GP today! I said I needed to book the day off work as we had no idea about the time of day, the GP surgery were useless and just said it would be any time before 5.

The GP came at half two. And was just useless. I explained all concerns. And all he said was, "well your dad seems fine". I explained the memory clinic. I explained the memory, confusion, the incontinence the uncontrollable night sweats... Everything.... And all he said was your dad needs to go to physio at the hospital and someone will need to take him. There is no reason the walking problems are neurological... Like ***! I had to take the day off work at the last minute... Again... And this useless waste of a GP comes and acts like it's all just an inconvenience. I'm livid.
You poor thing, it sounds horrendous. I am afraid it was the poo and urine problems that finished me off along with the falling for my husband, this was when I first considered respite which eventually led to permanent care. I resisted it for so long. You are at the end of your tether and need a break, please, please, for your own sake start looking at homes for respite now. Believe me I know what a difficult decision it is.
 

AztecCamera87

Registered User
Mar 12, 2019
150
It's nice to have a diagnosis. The incontinence stuff has now been rushed through, despite initially being told it would be another month before a proper assessment.

had to take another morning off work to take my dad to his diabetes check up, I expressed my worry that his blood sugars have been too high of late, and bringing evidence! (stuck in the 20s with no obvious reason). I was just told not to worry unless he was feeling sick. but sadly, my dad won't tell us if he's feeling unwell, no UTI and nothing untoward with his bloods. The nurse wanted to weigh dad, I explained he couldn't stand to be weighed. But he insisted we try. Dad couldn't walk to the weigh station. I kinda wish they would take what I say at face value.

It's difficult being a primary carer. I reached out to the brother we had a falling out with. He told me to talk to his girlfriend. I explained everything and all she would say is that he has done a lot of reading, so knows it's hard. I asked if he would at least call dad to say hi.... That bit got no answer.
 

TNJJ

Registered User
May 7, 2019
1,399
cornwall
It's nice to have a diagnosis. The incontinence stuff has now been rushed through, despite initially being told it would be another month before a proper assessment.

had to take another morning off work to take my dad to his diabetes check up, I expressed my worry that his blood sugars have been too high of late, and bringing evidence! (stuck in the 20s with no obvious reason). I was just told not to worry unless he was feeling sick. but sadly, my dad won't tell us if he's feeling unwell, no UTI and nothing untoward with his bloods. The nurse wanted to weigh dad, I explained he couldn't stand to be weighed. But he insisted we try. Dad couldn't walk to the weigh station. I kinda wish they would take what I say at face value.

It's difficult being a primary carer. I reached out to the brother we had a falling out with. He told me to talk to his girlfriend. I explained everything and all she would say is that he has done a lot of reading, so knows it's hard. I asked if he would at least call dad to say hi.... That bit got no answer.
Hi. My dad cannot walk either to be weighed .He is also diabetic.
He gets weighed on a sit down scales.Like a chair. That would be probably better for your dad.

I had the same with the nurses (they come to him,as dad is practically house bound)I had already spoken to them and told them.But it was fun watching them try.
 

AztecCamera87

Registered User
Mar 12, 2019
150
Hi. My dad cannot walk either to be weighed .He is also diabetic.
He gets weighed on a sit down scales.Like a chair. That would be probably better for your dad.

I had the same with the nurses (they come to him,as dad is practically house bound)I had already spoken to them and told them.But it was fun watching them try.
His last appointment was in the home. I expressed my concern with a physio referral. my dad is struggling to understand the excercises. But we still try on a daily basis. He is unable to understand or copy movements. I'm hoping with the diagnosis on record they may take my concerns more seriously... Here's hoping.
 

TNJJ

Registered User
May 7, 2019
1,399
cornwall
His last appointment was in the home. I expressed my concern with a physio referral. my dad is struggling to understand the excercises. But we still try on a daily basis. He is unable to understand or copy movements. I'm hoping with the diagnosis on record they may take my concerns more seriously... Here's hoping.
If it was in the home ,they should have a sit down scales..Sometimes the way things happen with professionals is hopeless!
 

Claireo

Registered User
Sep 24, 2019
11
Hi everyone.

Firstly, thank you for all the advice which everyone has offered me since I started this thread in March this year.

Today, my dad has been diagnosed with Alzheimer's Disease, we don't know really how far along he is with this illness. However, the memory clinic nurse, from speaking to me and my sister at the assessment, suspects he may have been struggling with symptoms for the last few years, and recent traumas may have progressed things. We were told the CT Scan did not show any damage to suspect it was vascular dementia (which is what the nurse had suspected at first, but the consultant disagreed) or mixed.

So what does it mean from here? I'm not certain really. They are going to start my dad on Donepezil to help ease symptoms and slow progression.

So there we go....
Hi,
Did you not have an MRI to see the Alzheimer's?

My mum had just been diagnosed with mixed dementia. Nothing showed up on the CT, but the MRI had spots, shading etc...she's been put on donepezil too. I had a similar story with getting the GP to listen as she passed the ridiculous GP test...

My mum's sugar levels are bordering on ore diabetes so I've taken over cooking all her meals with low GI foods. Everything is cooked in coconut oil etc.

Sending you hugs.
 

AztecCamera87

Registered User
Mar 12, 2019
150
Hi,
Did you not have an MRI to see the Alzheimer's?

My mum had just been diagnosed with mixed dementia. Nothing showed up on the CT, but the MRI had spots, shading etc...she's been put on donepezil too. I had a similar story with getting the GP to listen as she passed the ridiculous GP test...

My mum's sugar levels are bordering on ore diabetes so I've taken over cooking all her meals with low GI foods. Everything is cooked in coconut oil etc.

Sending you hugs.
No, we didn't get an MRI scan, should we still push for this? I did think dad was probably struggling with Vascular Dementia or Mixed (the nurse did say that she thought that may have been the case at first, but the consultant insisted this wasn't).

The report said there is no signs of that from the CT Scan, but I understand that this isn't always the best scan. Does it really matter, if dad is misdiagnosed with the wrong type of dementia? (I ask this in all seriousness) as wouldn't the support be pretty much the same?

As for the diabetes, Dad's can be rather difficult to manage, as his blood sugars can fluctuate for no obvious reasons.
 

Jaded'n'faded

Registered User
Jan 23, 2019
687
High Peak
No, we didn't get an MRI scan, should we still push for this? I did think dad was probably struggling with Vascular Dementia or Mixed (the nurse did say that she thought that may have been the case at first, but the consultant insisted this wasn't).

The report said there is no signs of that from the CT Scan, but I understand that this isn't always the best scan. Does it really matter, if dad is misdiagnosed with the wrong type of dementia? (I ask this in all seriousness) as wouldn't the support be pretty much the same?

As for the diabetes, Dad's can be rather difficult to manage, as his blood sugars can fluctuate for no obvious reasons.
I wouldn't bother. My mum had a CT scan after a fall. The consultant visited her about 6 months later (we'd moved her into a CH by then) and told me (on the phone) it was 'probably' vascular dementia going by the scan and her behaviour. I then told him how she'd been deteriorating for the past 5+ years and he changed his diagnosis to mixed Alzheimer's and Vascular.

You're right - it doesn't really matter.I think if mum had only been in the early stages I might have pushed for further investigation/testing but by then there was really no point. Mum has mid-stage dementia, moving towards late stage now.

In the early stages, some types of dementia present in different ways, and there are drugs that can slow down certain types, but as time goes on they all seem to become quite similar. Unfortunately.
 

Claireo

Registered User
Sep 24, 2019
11
No, we didn't get an MRI scan, should we still push for this? I did think dad was probably struggling with Vascular Dementia or Mixed (the nurse did say that she thought that may have been the case at first, but the consultant insisted this wasn't).

The report said there is no signs of that from the CT Scan, but I understand that this isn't always the best scan. Does it really matter, if dad is misdiagnosed with the wrong type of dementia? (I ask this in all seriousness) as wouldn't the support be pretty much the same?

As for the diabetes, Dad's can be rather difficult to manage, as his blood sugars can fluctuate for no obvious reasons.
I think the support would be the same, however they might prescribe a stronger drug/different one as it may show that things are worse...if you see the neurologist it may be worth asking why they haven't done one and if they did would it change the drug chosen? I think my mum had an MRI as the CT showed a mengionma which the neurosurgeon was determined wasn't the cause of memory issues...I think everyone with memory issues should have the option of an MRI, to try and detect issues earlier...
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I think the support would be the same, however they might prescribe a stronger drug/different one as it may show that things are worse...if you see the neurologist it may be worth asking why they haven't done one and if they did would it change the drug chosen? I think my mum had an MRI as the CT showed a mengionma which the neurosurgeon was determined wasn't the cause of memory issues...I think everyone with memory issues should have the option of an MRI, to try and detect issues earlier...
So my Mum has had a C/T scan & I discussed wether anything would be gained from a MRI. The MRI process is longer & noisy, Distressing the PWD & claustrophobic. So weighing up what would be gained by having that information & would it change the treatment or outcome, alter the diagnosis?
No
So why put mum through extra stress & distress. She found the 2 hour mental Capacity Assessment traumatic & putting her through emotional distress would be more detrimental than beneficial. Likewise another appointment to discuss treatments & see more consultants wouldn’t change the treatment or diagnosis; so we are moving forward & im being positive about the future - Mum feels better in herself & her confidence is growing. We are about to plunge head first down the helter-skelter of mixed dementia late to end stage. Naming the dementia doesn’t change how she feels just gives us options but ultimately the treatment remains the same!

Sadly the horse has already bolted & it’s now pointless in shutting the stable door!