Hello

[Squintykid]

hello again probably a little ranty for my first post but I need it

I'm 48 years old currently caring 24/7 for my 75 year old father, I've lived with him and cared for him for 11 years, knee replacements, hernias, cataracts, cancer scare, bit of vascular surgery, touch and go treatment for a ruptured GIST. Seems endless, I don't think I've been 6 months without something.

He is undiagnosed apart from the general consensus that he has dementia. He has referals to the neurology dept and the memory clinic but everything is moving so damned slowly.
The GP said it was age, it went that way for a months until upon seeing a different GP who just couldn't believe that considering the symptoms he hadn't been checked for Alzheimers or Parkinsons

He's been struggling for around 12 months, before that he was just Dad bit ecentric, bit forgetful. And taking into account hti s is the way that his mother went...stubborn as heck.

First big event was 13 months ago, he had a fall followed shortly by what I believe to be a TIA. Considering what I know now, probably a TIA with fall and another a TIA a week later. I took two months off work to care for him and he was back up to scratch, not 100% but he could look after himself and I went back to work.

April 2016 I had a few days off work and he got up at pensioner time, came down stairs, two minutes later he was hanging of the chair, burning headache, numb arms.

By the time the ambulance had got ther he was groggy but on the mend, ECG, BP, blood sugar, oxygen all fine. So we had the first trip to our local hospital.

Five times in six weeks, each time a little more of dad went away and I could almost tell by his sleep pattern that the next event was due.

Three months on, no diagnosis, my Dad has days where he can't get dressed, can't wash, forgets how to turn the TV on, makes tea in the sugar bowl, can't remember simple words like cup, glasses. And regular nights where he can't settle and searches the house for 'papers', money, the two dogs we no longer have.

We spent another 10 hours in A&E on Friday, stroke like symptoms, scans, x-rays, bloods. One very frightened old man who thought he was going to die.
In between sleeping like a baby and telling the doctor that he was dying from cancer: of the eye. God help me. Yes he has dementia.

Yes this 'event' has been the one, he essentially slept it off, he went to sleep every time my back was turned and for three days (whilst he wasn't sleeping) he was my Dad again.
Until yesterday, woke up early, said good morning, had a wash......and put his clothes on backwards. Gone again.

Anyway, far too long a first post. thanks for reading this far.

 

[chris53]

Good evening Squirtykid, and hello to you,a warm welcome to Talking Point so sorry both you and dad seem to be "left to get on with things" and have very little support or information from the people that may make life just a little bit more easy for both of you, may I suggest that you take a note of these difficulties and changes which are happening and have a consultation with the more "understanding" GP ask if he/she could do an urgent referral to social services for an assessment of needs..getting the GP to do this does speed things up somewhat above all please do keep posting here,understanding and support by the bucketful, and even smiles (in our tea room) should you feel the need.
Hoping you get practical help very soon, and sending you a big virtual hug
Chris x

 

[Shedrech]

Hello to you Squintykid
no post is ever too long, especially when you have so much get off your chest
what an amazing support you are for your dad
so I'm glad you've found us all here to get some support for yourself too

sounds as though there's a lot going on with your poor dad - so it's good that the new GP is turning out to be an ally - is the GP up to date with all these hospital visits? - I think I'd be going back to them, explaining the deterioration in your dad and asking for a referral to the LA Adult Services so that you can get some help to care for him, and the GP can check up on the position re a diagnosis

have you applied for Attendance Allowance? if not will be worth doing
and have you Powers of Attorney in place - useful for the future

I hope you get some time for yourself, too - probably easier said than done

keep us up to date

best wishes to you both

 

[Squintykid]

thanks for the replies,
I'm pushing the GP, the one we've been seeing for the last few weeks is apparently the practice parkinsons/alzheimers doc.
Doesn't make much difference though, no hurry up on referrals.
Waiting, waiting, waiting.. on attendance allowance, dad doesn't qualify for any other benefits.
Can apply but wont get CA until receipt of a qualifying benefit.

PoA yes..LPoA not yet, father has been difficult to deal with on this matter. past and present. But assuming that he is compos when the witness turns up....

might sound selfish but depending on how this progresses I may lose my home and inheritance in one fell swoop.

time for me? who cares for the carer... yes much easier said than done. does
half an hour in Asda count?

 

[Dave66]

Hi SquintyKid

Welcome to Talking Point, you've made a very positive step coming on here.

Once Attendance Allowance has been granted, then Carers Allowance and a Council Tax reduction would be a "straight forward" process.

Hopefully you wont be waiting too long for the "system" to kick in and once it does, there is a tremendous amount of help and support out there.

We are really blessed where I live, we have a great Memory Team...Social Worker/Mental Health Nurse, Support Worker, Occupational Therapy, Adult Social Care, Admiral Nurse as well as support from the Alzheimer's Society. There is a Carers Support Centre, for help and advice, courses, basic first aid for example, oh and you can get a massage here as well!

When your Dad has been assessed, hopefully he will get some Carers come in to help with things, then you need to get a Carers Assessment done ASAP, this is for you, so you can have time for you. It may be a couple of hours 2 days per week, but it's for you to have a break. Don't forget, you are important, without you and people like you the system would be overwhelmed. There is care out there for Carers, you just have to look for it sometimes.

I hope all goes well for you and your Dad and you are not waiting too long for the help you need and are entitled to.

 

[Squintykid]

sounds wonderful Dave66, is that it? two hours? I didn't get that much sleep last night.
Dad was very disturbed last night, could have been the high temperatures. Could just be the dementia cycle, but he woke me up for the 3rd or 4th time to tell me he had a saucepan full of ice-cream that the had to be eaten before the gypsies took it.

he is actually asleep, one eye wide open, living his dreams. His dad coming home from war, and whatever he watched on tv.

 

[WORRIER123]

Hi Squiny kid, I will reply more tomorrow but your post was like reading my autobiography
Scarily similar in every way even ages !

 

[Dave66]

Hi SquintyKid

My Dad currently gets one 2 hour and one 3 hour Sitter Day each week, I'm not sure if there are additional hours/days he can have, that information wasn't given!! All that was said was that every request has to be assessed and a manager has to make the decision based on the report provided. I assume Adult Social Care have a budget for Carers and one for the person being cared for.

The Sitter Service has been available to Dad for a long time, but due to his past stubbornness, he's only recently opened up to the idea, this change of mind was driven by Mam's night time activities and agitation. Mam could be up nearly every hour and sometimes, multiple times in an hour. The lack of sleep and continual disturbance was (and still is) causing a lot of stress and angst for Dad.

We got Mam put on to 15mg of Mirtazapine which has reduced her night time movements, Mam may now sleep for 4-5 hours before her first movement, then it varies after that, it could be every hour for a few hours or it could be just the one movement then another 4 hour sleep.

I hope you manage to get something put in place that will enable both of you to get the sleep you need and for you to get a well deserved break once or twice per week.

Good luck and please keep us all informed as to how this evolves.

 

[henfenywfach]

hello again probably a little ranty for my first post but I need it

I'm 48 years old currently caring 24/7 for my 75 year old father, I've lived with him and cared for him for 11 years, knee replacements, hernias, cataracts, cancer scare, bit of vascular surgery, touch and go treatment for a ruptured GIST. Seems endless, I don't think I've been 6 months without something.

He is undiagnosed apart from the general consensus that he has dementia. He has referals to the neurology dept and the memory clinic but everything is moving so damned slowly.
The GP said it was age, it went that way for a months until upon seeing a different GP who just couldn't believe that considering the symptoms he hadn't been checked for Alzheimers or Parkinsons

He's been struggling for around 12 months, before that he was just Dad bit ecentric, bit forgetful. And taking into account hti s is the way that his mother went...stubborn as heck.

First big event was 13 months ago, he had a fall followed shortly by what I believe to be a TIA. Considering what I know now, probably a TIA with fall and another a TIA a week later. I took two months off work to care for him and he was back up to scratch, not 100% but he could look after himself and I went back to work.

April 2016 I had a few days off work and he got up at pensioner time, came down stairs, two minutes later he was hanging of the chair, burning headache, numb arms.

By the time the ambulance had got ther he was groggy but on the mend, ECG, BP, blood sugar, oxygen all fine. So we had the first trip to our local hospital.

Five times in six weeks, each time a little more of dad went away and I could almost tell by his sleep pattern that the next event was due.

Three months on, no diagnosis, my Dad has days where he can't get dressed, can't wash, forgets how to turn the TV on, makes tea in the sugar bowl, can't remember simple words like cup, glasses. And regular nights where he can't settle and searches the house for 'papers', money, the two dogs we no longer have.

We spent another 10 hours in A&E on Friday, stroke like symptoms, scans, x-rays, bloods. One very frightened old man who thought he was going to die.
In between sleeping like a baby and telling the doctor that he was dying from cancer: of the eye. God help me. Yes he has dementia.

Yes this 'event' has been the one, he essentially slept it off, he went to sleep every time my back was turned and for three days (whilst he wasn't sleeping) he was my Dad again.
Until yesterday, woke up early, said good morning, had a wash......and put his clothes on backwards. Gone again.

Anyway, far too long a first post. thanks for reading this far.

Hi I'm my dad's carer he has dementia and my dad is my mum's carer due to physical disabilities. Mind you my mum displays many of my dad's symptoms.

Never ending illnesses appointments and yes its all down to me. We have more family but my parents don't ask and the family doesn't offer.

It took so long to get a diagnosis I went for a second opinion..which ironically came before my health board had even diagnosed my dad.

I emailed the director of mental health services and basically said I'm going elsewhere and will then make a complaint due to state that my dad was left in whilst waiting for diagnosis. .

Then out of the blue..an nhs appointment....Two years or more..In all...

I soon learnt that I had to do what I had to do and that in order to look after myself I had to be occasionally selfish which is just not me..
My parents refuse help other than myself...The journeys are many ..The rewards only self reassurance that I'm doing my bit...

When services move slower than the progression of the condition ..you soon realise ..wait for no one..and you the loudest gets heard first.

The point of a diagnosis is to rule out as well as to rule in...of only they would get that!!!
Best wishes