Dementia

[daz2202]

My mum was diagnosed with Alzheimer's aged 51. She is now 60. Various drugs have got her this far but life is now very difficult for her to do simple tasks.

It is an awful illness for them and those around them. You have my sympathy and I hope you get some decent medical assistance.

There is also a lot of support around for you and your mum is as much as groups to attend. These really help my dad as he is my mums main carer.

Be strong and one thing I will recommend is don't get frustrated or angry with them when they do the most silly things. It's not their fault and you mustn't knock the last confidence that they have.

 

Best wishes

[Chris Bb]

We thought the MIL had dementia, she was showing all the classic symptoms, even got her into a temporary care home from hospital, and that took some doing.

 

Turned out to be a urinary tract infection, who'd have thought it? May be worth investigating.

 

As others have said, difficult and not nice, condolences.

[STOTTO]

We thought the MIL had dementia, she was showing all the classic symptoms, even got her into a temporary care home from hospital, and that took some doing.

 

Turned out to be a urinary tract infection, who'd have thought it? May be worth investigating.

 

As others have said, difficult and not nice, condolences.

 

Two of my dad’s brothers who had been living together for years, one was 76 and the other was 82, the younger one once discovered the older one going out of the of the front door at three o’clock in the morning armed with a samurai sword on his way to murder the next door neighbours whom he was convinced were coming to steal his money!

Dementia no, urinary tract infection yes and it almost proved fatal…...for the neighbours!! He is long gone now God bless him but the sword as you may guess, went before him!

[eddoakley]

Not read all of the replies to this but my recent experience is of the feo coming to visit my grandfather for a renewal. He is difficult to understand at the best of times but when my 85 year old grandfather couldn't hear him properly or answer his questions easily he asked him to surrender his certs. He went to his go and was referee to a specialist.

Several scans and appointments later he was given a 100% clean bill of health.

Feo didn't like it much when I told them!

Didn't think it was the feo's place to suggest that my grandfather might be suffering from dementia or similar! At what point do they undergo medical training to become an feo??

Anyway, I hope that the results are similar for the op and/or some medication makes as big a difference as some have experienced.

 

Edd

[Brad93]

Surrender the cert now and transfer guns to your cert, that way if doctors impose any restrictions the police don't have to be notified therefore causing problems if you ever want to take him shooting under your supervision.

All the best hope the doctors can help your father out.

 

If your father is a member of the BASC I'm sure they will be able to give some solid advice.

Edited December 27, 2015 by Brad93

[Bobba]

In too many instances the NHS are quite unhelpful with regard to meeting the costs of continuing patient care for those with the illnesses of Dementia or Alzheimer's who have to go in to care.

Regularly there are press articles where, after appealing to the ombudsman, families are retrospectively refunded many tens of thousands pounds because the NHS decision not to fund continuing patient care was quite simply wrong.

And, sadly, during the decision, appeal and ombudsman processes the families are having to deal with the stress and fund the continuing patient care costs.

Whilst there should be criterea against which to judge how tax payers money is spent, it seems to me that there is a reluctance to recognise Dementia and Alzeimers as illnesses to be funded by continuing patient care. Probably because with an ageing population and an increase in the numbers with these illnesses the overall costs will be rising. And, in a cost cutting environment, not spending money has the same budgetary effect!

Edited December 28, 2015 by Bobba

[rjimmer]

The police got to hear that a local chap had the first stages of Alzheimer disease and took his FAC but left him with a SGC. They thought he might forget how many shots he had fired from his 5-shot shotgun. I think he also had a .22 rf.

[Savhmr]

My father has dementia with Alzeimers and has had for 5 years. When he was diagnosed, his guns were transferred to me by way of a variation for the firearms and transfer for the shotgun. His licence was suspended by DVLA and he had to surrender his shotgun and FAC certificates. I felt happier as his driving had become more obviously careless in terms of poor observation and I had been trying to persuade him to hang up his keys.

 

The NHS have been next to useless and when my Dad had to go into hospital for treatment for a leg condition recently, he was not well treated because the staff on general wards have had no dementia training, and some were quite impatient with him. In fact, I had a slight set-to with a porter who physically pushed him out of a wheelchair after asking 3 times for him to get up when returning from a scan and Dad didn't understand. I grabbed the porters offending arm quickly and politely but firmly pointed out that he'd be the one needing the wheelchair if he laid another finger on my father. To complicate matters, Dad had cancer and half his insides were removed 5 years back and he has regular trips to hospital for scans and other related treatment following related complications.

 

We have had a nightmare with getting help and care. Nothing much available at home except attendance allowance and financial support isn't enough to cover night time home help when dementia patients tend to wander (the risk being falling down stairs). We put in all the legwork and finally discovered temporary respite funding is available via social services, but this was never advised by the helplines or the NHS. Dad was transferred into a care home before Christmas and sadly, I doubt whether he will be coming home. His dementia is now advanced but he is still in denial that he has anything wrong with him so it is always an emotional roller coaster for him and for us with him wanting to come home every visit. The care home provide specially trained staff who can take 24/7 care of him and they are fantastic. The NHS could do well to see how real caring is done. We visit daily or every other day at least. I feel for all those affected as it hits the whole family hard. Financially, I was not aware that continued patient care funding was available or could be applied for as currently, dementia patients have to meet their fair share of care costs by means test, and the care costs are very steep indeed.

Edited December 28, 2015 by Savhmr

[team tractor]

My granny used to talk about the Germans next door and hitler lol.

She didn't know who I was for 20+ years and wondered off to see her mum She'd been dead 30/40 years

[B25Modelman]

Something I considered a number of years ago (death) so I planned ahead.

 

I urged my son to get an SGC. He is still not in the best of situations to hold guns (rented accom and a growing family), BUT he can step in and sort them out should I become incapable. I just did not want them going to a local RFD where you just don't know what is happening to them and they can charge what they want to hold them.

 

Their full specifications are documented with expected values to assist his selling or retaining them because we all know gun specs can be rather difficult to quantify.

 

So in short guys PLAN FOR THE WORST.

Edited December 29, 2015 by B25Modelman

[Bobba]

Something I considered a number of years ago (death) so I planned ahead.

 

I urged my son to get an SGC. He is still not in the best of situations to hold guns (rented accom and a growing family), BUT he can step in and sort them out should I become incapable. I just did not want them going to a local RFD where you just don't know what is happening to them and they can charge what they want to hold them.

Good thinking. Similarly, I have a good buddy, about 20 yrs younger than me, who lives about 800 yds away. He has a SGC and FAC. My wife and I have an agreement with him that at the first signs of any dementia type issues he collects my guns and holds them until the matter is clarified. My wife does not know where my cabinet keys are but he holds a copy.

[Sha Bu Le]

The posts were removed as they contained links to the offending post, which was in extremely bad taste

 

:shaun:other had died 6 years previously

Not seen the post Shaun but brownie points for removing it.

 

I have found it very emotional reading the posts from lots of PW'ers. Thankfully I have not had to cope with this condition in parents, or other close relatives. Nearest I came to it was visiting my dad one day and he did not have a clue who I was. His condition never developed to serious concerns as he had a heart attack which he did not survive, my mother had died 6 years before.

 

On one hand I grieved for the loss of my dad at 66 but on another hand I thought thank God he did not have go though the nightmare of dementia.

 

This may sound a tad callous but its how I feel.

 

My thoughts go out to all those people who have to cope with this situation.

[Vince Green]

We have a family member in a home with 'dementia' except the doctor would not give a diagnosis. Wriggled and squirmed saying she appeared confused but just wouldn't put the word dementia down on any form. The reason we found out too late was because once she had a formal diagnosis she became a patient with a medical condition and was entitled to a lot more help than she was getting.

 

Age Concern was very good, highly recommended in fact, but too late to help in her case. Social Services were useless, you have to be very stroppy with these people because they are all trying to step back and leave it all to you.

[daz2202]

My father has dementia with Alzeimers and has had for 5 years. When he was diagnosed, his guns were transferred to me by way of a variation for the firearms and transfer for the shotgun. His licence was suspended by DVLA and he had to surrender his shotgun and FAC certificates. I felt happier as his driving had become more obviously careless in terms of poor observation and I had been trying to persuade him to hang up his keys.

 

The NHS have been next to useless and when my Dad had to go into hospital for treatment for a leg condition recently, he was not well treated because the staff on general wards have had no dementia training, and some were quite impatient with him. In fact, I had a slight set-to with a porter who physically pushed him out of a wheelchair after asking 3 times for him to get up when returning from a scan and Dad didn't understand. I grabbed the porters offending arm quickly and politely but firmly pointed out that he'd be the one needing the wheelchair if he laid another finger on my father. To complicate matters, Dad had cancer and half his insides were removed 5 years back and he has regular trips to hospital for scans and other related treatment following related complications.

 

We have had a nightmare with getting help and care. Nothing much available at home except attendance allowance and financial support isn't enough to cover night time home help when dementia patients tend to wander (the risk being falling down stairs). We put in all the legwork and finally discovered temporary respite funding is available via social services, but this was never advised by the helplines or the NHS. Dad was transferred into a care home before Christmas and sadly, I doubt whether he will be coming home. His dementia is now advanced but he is still in denial that he has anything wrong with him so it is always an emotional roller coaster for him and for us with him wanting to come home every visit. The care home provide specially trained staff who can take 24/7 care of him and they are fantastic. The NHS could do well to see how real caring is done. We visit daily or every other day at least. I feel for all those affected as it hits the whole family hard. Financially, I was not aware that continued patient care funding was available or could be applied for as currently, dementia patients have to meet their fair share of care costs by means test, and the care costs are very steep indeed.

Your write up is almost a carbon copy of my life now and experience of this awful illness.

I have first hand experience and know what you are going through and it really is rubbish.

Wish you all the best

[Flashman]

The only way to deal with "care" agencies is to read up on all complaints procedures and commence active monitoring and put them on notice that you will be ruthless in pursuing your (normally parents) patient's rights. Truly, the squeaky wheel get the oil when it comes to the care of your own family and hang the rest.

 

Having gone through it with my Grandmother, I learnt that you must cross-examine and question everything social services and NHS staff say, as the middle management rarely if ever care about the patient and dragging information out of them regarding help and financial assistance can be soul-destroying. The actual carers, rather than the administrators, were great and I cannot think of a more heartbreaking, thankless job than caring for people with this awful disease.

 

My heart rate goes through the roof when I think of the billions we waste on foreign aid, the regions, legal aid, animal welfare and human rights that could be spent on care and medical research. I remember thinking that my Grandparents contributed to the NHS since its inception, yet some jibba-jabba heathen can jump the queue and delay care for which they paid many times over.

Edited December 29, 2015 by Flashman

[Savhmr]

Your write up is almost a carbon copy of my life now and experience of this awful illness.

I have first hand experience and know what you are going through and it really is rubbish.

Wish you all the best

 

Thank you Daz, that is appreciated.

 

Good post from Flashman above too, and I agree with most of it from my own experience. Sadly, we have recently discovered that my mother is now showing signs of vascular dementia following a number of TIA type strokes so looks like we have it all to go through again, possibly over a fair few years.

 

It is a hidden and thankless task caring for those with dementia and it affects many thousands of families, but oddly there is still a sort of taboo even within social care and medical circles about help or dealing with it. I have found the lack of care support frustrating and concerning. The lack of any sort of financial support has also been concerning as it falls onto my wife and I to subsidise any shortcomings to ensure that my Father receives the care and attention needed. There is definitely a "throw them on the scrapheap" mentality, even if hidden behind a cloak of faux concern, by social and NHS circles once the disease progresses so far, and the emotional impact of that on close families can be quite devastating. I feel like I'm swimming in treacle trying to get the help and support needed and that we are living in a society which cares more about cats and other creatures than human beings. I wouldn't mind betting that more public money goes towards environmental legislation administration and management than on mental healthcare and support in the UK.

 

This country seems to have its priorities well and truly screwed up at present and needs a damned good wake up call.

[daz2202]

Your totally right about the lack of care our system has to offer. 20 years ago when I had my grandad with Alzheimer's it was near impossible.9 years ago it was my old nan. But from experience I had learned about where to go and what to do.

My mum was diagnosed at the age of 51 and with all the experience we now have we managed a reasonable outcome at the moment. We have had to fight with the nhs to keep her on aracept as this seems to be the only drug that helps her.

Mum is now 60 and starting to really struggle with minor daily tasks. State assistance is almost nil. My sister has now had to pack up work to look after my mum and I have agreed to assist her salary in various forms so this is possible for her to do.

[Bobba]

My late mother had dementia occasioned by Transient ischemic attacks (TIA's). My then experience of NHS managers and Social Services was not good. Finding someone to put their hand up and say that they were responsible for my mothers care plan was like WWIII. And her entitlement to financial assistance with care home costs seemingly changed with every change in Social Services staff turnover. It didn't really change. It was that their knowledge on what the rules were was inconsistent. Management and staff at her care home were brilliant and their finance staff knew the rules and helped enormously. But I shouldn't have had to rely on them.

 

Some years later The Court of Protection appointed me guardian of my late MIL when she had dementia. This responsibility was for both her care and finances. Dealing with the Dept of works and pensions was a nightmare. Her pension was dealt with by Swansea office and her Attendance Allowance by Blackpool and ne'er the twain shall meet. It ended in Ministers Correspondence where I identified the Minister concerned with these matters; identified their mission statement; demonstrated how their actions and practices differed in so many ways; and asked the question "as your staff are incapable of managing their affairs, will you?" Things changed for the better after that. Social Workers created more obstacles than an assault course. The only sensible assistance came from Bristol Social Services Finance Dept. Knowledgeable, caring and helpful.

 

So, already a pattern is forming where PW members report on their bad experiences and we are but a small section of society. Is there anyone out there who can actually report good and helpful experiences and support from the NHS and Social Services? Or, is that a lost cause?

[Paul T]

I can sympathise with those going through dementia with a loved one - it's something I wouldn't wish on anyone.

 

My late MiL went down hill quite quickly after she had temporal arteritis. I converted one of our lounges into a bedsit for her with own en-suite. We got no help at all from anyone and because she had some savings, it was deemed that she should pay for everything. In the end, it was cheaper for Mrs T to give up work and care for her mum, but it put a hell of a strain on everything.

 

As she deteriorated we had screaming when trying to get her dressed, constant wailing, wet and soiled beds, shouting out of the front door in the middle of the night, refusing to eat, unable to distinguish between TV and real life (Midsommer Murders ended up on the banned list!) plus a whole host of other things.

 

Eventually we had to admit her to a care home which cost thousands, but we simply couldn't cope with her at home. Once in there she lasted only a few months as she refused to take her medication and it eventually took its toll. It was a horrible way to go.

 

If you are dealing with this dreadful condition you have my heartfelt sympathies.

[Savhmr]

My late mother had dementia occasioned by Transient ischemic attacks (TIA's). My then experience of NHS managers and Social Services was not good. Finding someone to put their hand up and say that they were responsible for my mothers care plan was like WWIII. And her entitlement to financial assistance with care home costs seemingly changed with every change in Social Services staff turnover. It didn't really change. It was that their knowledge on what the rules were was inconsistent. Management and staff at her care home were brilliant and their finance staff knew the rules and helped enormously. But I shouldn't have had to rely on them.

 

Some years later The Court of Protection appointed me guardian of my late MIL when she had dementia. This responsibility was for both her care and finances. Dealing with the Dept of works and pensions was a nightmare. Her pension was dealt with by Swansea office and her Attendance Allowance by Blackpool and ne'er the twain shall meet. It ended in Ministers Correspondence where I identified the Minister concerned with these matters; identified their mission statement; demonstrated how their actions and practices differed in so many ways; and asked the question "as your staff are incapable of managing their affairs, will you?" Things changed for the better after that. Social Workers created more obstacles than an assault course. The only sensible assistance came from Bristol Social Services Finance Dept. Knowledgeable, caring and helpful.

 

So, already a pattern is forming where PW members report on their bad experiences and we are but a small section of society. Is there anyone out there who can actually report good and helpful experiences and support from the NHS and Social Services? Or, is that a lost cause?

 

I have had good experiences with one member of staff on our local Adult Care Team who's approach was helpful, friendly and caring....sadly that person was not the appointed care officer (who is part time) and just standing in. Getting anything to happen is like pulling teeth. I was astonished to find that prior to agreeing any respite care, a long winded form had to be completed by my father. I mentioned, a little too sarcastically, that would be difficult given that he had advanced Alziemers, but they insisted, and turned up armed with wreaths of paperwork. They gave up after 10 minutes, having upset my father and mother, so I reported the matter to the manager of the unit asking what sort of intelligence quotient was required to become an Adult Care officer these days.

 

They relented and arranged another appointment, some weeks later to come and see me, as I have power of attorney for financial and medical needs, and could provide the information needed. The officer duly arrived, filled in the forms but then, to my astonishment said that he'd need to re-visit my father to complete mental capacity test paperwork. That involved yet more delays and when it finally happened, he came over afterwards and knowingly stated that my father probably lacked mental capacity (give the man a medal!) and that they would make arrangements with a recommended care home to be able to care for him for a temporary stint to allow my mother some recovery of her health (given that Dad wanders most of the night and catches a little sleep during the day). We never heard back, and only after writing a stroppy letter to the manager did someone provide the contact details for the care home they had contacted, to allow us a visit to decide if we were happy with it.

 

We then did all the legwork ourselves, and then, having given up on Social Services who really have proved to be as useful as a chocolate teapot, made arrangements with the County Council to have a formal means test done, as Social Services had not even considered the transition between temporary and permanent respite (ie my dad being a full time care home resident because my mother simply cannot cope). We have gone through that process now and done the joined up thinking bit for ourselves as it is clear that Social Services only think in terms of budgets and what care can be provided to what budget area if the appropriate paperwork is done. There is no care planning, joined up thinking, or proper care involved, and they seem to spend half their time unavailable to do their job because of being tied up in departmental meetings. Calls were hardly ever retuned also. What annoys me most is that for years, my parents taxes paid for so called "care services" salaries, when all these departments seem to be are pen pushing jobsworths reluctant to handle any sort of proper and meaningful planning and assistance which one might be forgiven for thinking was their whole reason for being?

 

I have to say that the care home (in this case) have been fantastic and I cannot speak highly enough of the staff who really do care, and go the extra mile. They have gone to the trouble (as they have to) of formulating individual care plans and have a more responsible and holistic approach to dementia care. Unfortunately, that all comes at a price as our taxes don't seem to cover caring for the elderly, unlike other areas of the UK and Southern Ireland. I would be happy to lend a helping hand to anyone caught in similar circumstances who may benefit from our experience and needs advice on how to get started if they find themselves in need of help. My sincere sympathies to all reading this thread, and contributing to it, who find themselves in a similar position.

Edited December 30, 2015 by Savhmr

[The Croc]

My sympathies to the OP, know what it's like.

Wish your father and you, and your family all the best

 

I lost my Dad several years ago to this horrible complaint/disease, like several on here had to do a lot of fighting on his and Mums behalf

 

He was a very clever man, Marine Engineer by trade, Model Engineering was his hobby He built a working model Steam Lorry (about 4ft long and 2ft 6" ish high)

all out of scrap he got from the breakers yard, making tools he needed the same way, made the condenser by drilling out a solid block of metal with tiny drill bits.

It took him a long long time,(around 40 years) he started it when I was very young, and finished it (and drove it, sat on it, under steam down the road and back) when he was about 80, about 2 years in to Alzheimer's.

 

It tore me up when I used to phone him, and the way the conversations got worse over time, to the point where I knew exactly what he was going to say, and how many times he would repeat it. When he was working he was repairing the London River Tugs, so would talk about how they removed the prop shaft, and what they had to do, in a 40 min call, he would repeat that 4 times, Think I could that job blindfolded now

He couldn't remember 5 mins ago, but could tell me in detail about his childhood and life before WW1

 

I cried when I first saw him in the Mental Health Unit, sat in an armchair looking haggard

There are lighter moments though, if any of you been visiting in the Mental Health Unit in the Hospital will know how difficult and secure it is to get in and out of, a member of staff to open the inner door, lock it then open the outer door, he got out 3 times. made me smile

 

Then he was put in a care home, age 87/88, he looked and sounded better there, where he stayed until the end, at 92

 

Plus side he knew me right up till the end, I visited him about 3 days before he went

 

 

[kent]

Sad illness unfortunately so many reasons to send your certificate back if it happens to you or help a relative do the same in good time

[Arley]

Hi Guys,

 

Just a quick update, Dad has been diagnosed with Alzheimers and Vascular Dementia. I cannot believe how quickly he has gone down hill. He is currently in hospital and we have been told he will not be able to return home? When he gets confused he becomes violent which means Mom will not be able to cope having Dad at home.

 

Cannot believe a month ago Dad was ok we were just worried he wasn't himself, the decline in his behaviour has been shocking.

 

The police have been brilliant about transferring his shotguns across to my certificate. I was given good advice and I have already received my certificate back less than a week after sending mine and Dads in to have his guns transferred to me.

 

I would like to thank you guys for the messages of support I have received in particular from Puggers your kind words and advice have been invaluable at this difficult time

 

Thank you

 

Matt

[rjimmer]

How old is your dad?

[Arley]

Hi

 

Dad is 69