Alzheimers; a right bastard

My Dad was the same. He believed he was in it on his own and that he should deal with it on his own. Seeing earlier posts above will show a bit about how we dealt with it but the starting point was to get him looking at the Alzheimers UK website.

I would be wary about moving them into your own house as sooner or later your Mum is going to need specialist care which I assume neither you or your family are capable of providing especially as this condition will get steadily, and sometimes rapidly, worse.

My parents are going through this in France but I gather similar assistance is available in the UK. We started with respite care, although it took many years to break down my Dad's objections, and Mum will go to full time care in the next few weeks.
By moving them into our house, means that he can release all of his cash for care.

He has admitted that that she will very probably have to go into a home, but I am hoping that by releasing a not insubstantial sum of money, we can actually buy in a one to one service from a fully trained and experienced agency.

My problems with care homes, is you can pay a lot of money, and still get minimum wage people doing the caring.

My hope is, that by using money, we can attract the right sort of carer, who will be paid very well, thereby I hope that they look at my Mum as the proverbial ‘Golden goose’. Which in turn will ease the strain on him and eventually me.
My wife, kind of works tangentially in the care industry, so we know exactly what to expect, which tbh, doesn’t make it easier.
 
Update on Mrs Dave (posting #128), this is another long-winded tome so please (again) bear with me.......

If a case like this is normal NHS practice we are going to hell in a handcart.

I contacted the surgery to confirm they had received the results of the scan from the specialist which required the doctor to initiate an appointment with the neurologist. "No, not received anything". After a number of phone calls over a few days between the surgery and the specialists secretary, the surgery finally confirmed that they had the results of the scan so I thought I'd leave them to do their job and secure an appointment. What a mistaka-to-maka.......

My wife had a note in her diary to contact her doctor around the end of April if no progress had been made and so on 25th April in the afternoon I contacted the surgery, only to be met with a stroppy receptionist -

Me "I'd like to speak to Dr ****** regarding my wifes problem, please. She has a note in her diary to contact the doctor if she'd heard nothing toward the end of this month."
Receptionist "Doctor doesn't take phone calls"
"Oh, understood that she took/made calls to patients in the afternoon - I'd like to speak to Dr *****, please."
"Doctor doesn't take/make phone calls - what is your wifes problem?"
"I'm not going to discuss my wifes condition with you, needless to say she is a patient at ********* and I need to talk to the doctor regarding her situation."
"Doctor doesn't take phone calls"
I put the phone down and seethed - obviously short of going to the surgery myself I was stymied. However, about 1700hrs I received a phone call form the surgery-

"Hello, Dave8307, did you call the surgery this afternoon?" "Yes", "Could you tell me what about?"
(Uh oh, I thought, I'm going to be shafted here because I became annoyed at the receptionist).
I explained my conversation with the receptionist, but apparently there was no record of my request/discussion on the system. The surgery lady was most apologetic and told me she would contact the neurologist department herself and if I heard nothing the next morning to call her. (On reflection I wonder how she knew about the first phone call)

I was contacted the next day by the neurologist secretary and an appointment was made for last Friday - 4th April at 0930. Wooooppeee!!

We turned up 15 minutes before the appointment - large waiting room with two big monitors displaying waiting times for the various rooms. We had not been notified our room number by reception. After waiting 15 minutes past our appointment time a message flashed up asking anyone who was over their appointment time to notify reception. I notified reception and told there was a 27 minute delay (at this time the 27 minutes were up). Nearly an hour after our appointment we were called into our room.

The girl (junior doctor??) conducting the interview was foreign with a relatively poor command of English, most of her questions were met with us saying "say again, please". She asked Mrs Dave to walk across the room to check her balance (bugger me, she walked better than she had for years!!). She was asked to get onto the bed but it was too high, the girl didn't know how to lower the bed and so she disregarded that portion of the interview. She asked us the history of Mrs Daves problem (five years, remember) and we did as best as we could, but I asked if the girl had any case notes "No". No bloody case notes - how are they supposed to know the patients problem without case notes?

The appointment ended with the girl saying there wasn't much they could do to arrest Mrs Dave's decline as she didn't think there was any point in recommending a shunt being put in to drain the cerebro-spinal fluid from Mrs Daves brain.

Prognosis?? Mrs Daves condition will become increasing worse with no good outcome.

Ho hum.....thanks for reading
 

Grownup_Rafbrat

LE
Book Reviewer
Hard to know what to say. Your GP and hospital seem highly useless and if that's typical, I feel very lucky that I live in Dorchester where things are very different. Our wee hassles with Mr.GRB's health are being handled professionally and sensibly by comparison.

No consolation to you, I'm sure. You have my sympathy and prayers.
 
Another long one but I am calling on the wisdom of arrse.

After a very difficult few months,(My brother having major cardiac surgery and my mum a few weeks later.)
My bro seems to be making a reasonably good recovery, Slowly.
My old dears surgery went well from the cardiac repair point of view but I think they f@cked up from the perfusion point of view as they had to operate for about 14 hours.
Her foot looks like it will have to come off and her voice is knacked. The most worrying thing until today is that her kidneys have packed up and she is now on dyalisis for the foreseeable future
Today she woke up and asked me where "our" mum was. I tried to explain that her mum had been dead for years and I was her son.
Up until this point for about eight or nine weeks back home, she had been lucid and aware of her surroundings and generally switched on.
She insisted that we had the same Mum for a couple of minutes, then realized that she had made a mistake and was back to her normal self.
She has doubled her dose of Pregabalin to 100 mg a day on the advive of the GP.
I know I should have googled side effects first and will do so now but wondered if anyone had experience.
Its ******* terrifying seeing you're mum losing the plot and am fearing the worse.
 
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Thanks I have just looked up the drug and apparently its relatively common for strange dreams and hallucinations as side effects.
I will pin my hopes on that and talk to the doc, as the alternative is just too awful to contemplate.
I used to work in an old peoples care home and seen the bastard disease that, that and dementia are.
 
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StBob072

LE
Book Reviewer
Thoughts and prayers tonight for those of you going through difficult times with your nearest and dearest. Makes me realize how lucky I am. God bless.
 
My brother, sister and I went out to see my father 2 months ago to help him choose a permanent home for Mum. She didn't recognise any of us, particularly distressing for my Dad. He still insists that he's fine, no problems, nothing to see, whereas it was obvious that he was cracking up.

The psychiatrist says that Mum has started to get mildly violent(slaps and kicks) with the nursing staff at the respite home and believes it may be caused by confusion by being moved into respite for a week and home for a week alternately and wants her in permanent care ASAP. To this end she has been at home for a last week and has gone into respite for 3 more weeks whilst arrangements are made for her to move into permanent care from there into a rather nice place, as these things go, until she ends her days.

My Dad is in two minds about this. He feels strongly that he has let her down, just when she really needed him the most and that he has broken his marriage vows "in sickness and in health". Against that is that he has had a terrible week. Mum sleeps for 14 hours a day, never speaks except occasionally so sing "one a penny, two a penny, hot cross buns" and shows no emotion except that she finds DVDs of "Keeping up Appearances "hilarious. She shows no interest in the world about her and stares with dead eyes at the wall.

He admitted he was looking forward to her going back to care permanently and to starting his life again now that to all intents and purposes this business is at last at an end. He can visit her every day until she moves to the new home but after that it will become increasingly difficult as he is aware that his driving is now erratic at best. In the future he will have to take a taxi and if she doesn't recognise him or speak any more, then what is the point?

It's a rotten way to end 58 years together.
 
He admitted he was looking forward to her going back to care permanently and to starting his life again now that to all intents and purposes this business is at last at an end. He can visit her every day until she moves to the new home but after that it will become increasingly difficult as he is aware that his driving is now erratic at best. In the future he will have to take a taxi and if she doesn't recognise him or speak any more, then what is the point?

It's a rotten way to end 58 years together.
Its called love my friend and your father has it in bucket loads. Respect him for this.
 
Its called love my friend and your father has it in bucket loads. Respect him for this.
it´s ******* heart breaking reading this thread. Your family and father are going through what is perhaps the hardest test of them all and it sounds as though you are getting through it with stoicism and courage.
 
it´s ******* heart breaking reading this thread. Your family and father are going through what is perhaps the hardest test of them all and it sounds as though you are getting through it with stoicism and courage.
my father was the same - tried to look after my mum but had a heart attack, went to hospital and I got carers in, he hated having strangers in the house and she's now in a care home where she is being well looked after I think he's got used to his freedom. trouble now is my brother is staying until a suitable care home is found (one we looked at yesterday was not impressive at all)as he's in the last stage of GBM4 so he has someone else to keep an eye on :( I try to keep the peace but they wind each other up - it's a 24 hour job caring
 
My brother, sister and I went out to see my father 2 months ago to help him choose a permanent home for Mum. She didn't recognise any of us, particularly distressing for my Dad. He still insists that he's fine, no problems, nothing to see, whereas it was obvious that he was cracking up.

The psychiatrist says that Mum has started to get mildly violent(slaps and kicks) with the nursing staff at the respite home and believes it may be caused by confusion by being moved into respite for a week and home for a week alternately and wants her in permanent care ASAP. To this end she has been at home for a last week and has gone into respite for 3 more weeks whilst arrangements are made for her to move into permanent care from there into a rather nice place, as these things go, until she ends her days.

My Dad is in two minds about this. He feels strongly that he has let her down, just when she really needed him the most and that he has broken his marriage vows "in sickness and in health". Against that is that he has had a terrible week. Mum sleeps for 14 hours a day, never speaks except occasionally so sing "one a penny, two a penny, hot cross buns" and shows no emotion except that she finds DVDs of "Keeping up Appearances "hilarious. She shows no interest in the world about her and stares with dead eyes at the wall.

He admitted he was looking forward to her going back to care permanently and to starting his life again now that to all intents and purposes this business is at last at an end. He can visit her every day until she moves to the new home but after that it will become increasingly difficult as he is aware that his driving is now erratic at best. In the future he will have to take a taxi and if she doesn't recognise him or speak any more, then what is the point?

It's a rotten way to end 58 years together.
So sorry to hear your trials continue. Hang in there. We are all rooting for you.
 
Very hard thread to read as my father has been diagnosed with early stage alzheimers. I was in the UK a couple of weeks ago and he is mostly OK but I had cottoned on to it before my step mother took me aside to tell me.

Very difficult to know what to do living so far away. In reality, very little that I can do. He is surrounded by family and good friends, including a not-long retired three star who is exceedingly well regarded (including on ARRSE it seems) and who manages to inject some, gentle, military-style humour into things - which goes down well and balances out any tiptoeing around the subject.

A change in medication seems to have had a positive effect but, reading in this thread, I suppose that I need to plan for the worst hopefully, though, not in the immediate future. Does anyone have any more positive stories about how the disease can be managed, controlled, and lived with?
 
Very hard thread to read as my

A change in medication seems to have had a positive effect but, reading in this thread, I suppose that I need to plan for the worst hopefully, though, not in the immediate future. Does anyone have any more positive stories about how the disease can be managed, controlled, and lived with?

You should certainly plan for the worst, there is no cure and the rate of decay tends to go in steps with no set rhythm. One day suddenly your father will be unable, to his surprise, to tie a shoe lace, another day he won't be able to find a page in a book or dial a phone number. Each downward step is sudden and irreplaceable.

I'd start getting ducks in a row as soon as you can and while your father can sign for himself as mentally competent such as power of attorney, get a will made etc.

He might like to have a look at the Alzheimer's UK website so that he can be prepared for what is or my be to come (you too, come to that), so that he understands that he's not just being a bit forgetful, this is serious. It will also show him that he is not alone, that there is help out there, what support is available etc There are some scary stories on there.

The average life expectancy from diagnosis is 7 years but it can go on much longer. My Mum was just a bit nutty 6 years ago and is a silent wreck now. My Father's denial of his and her problems have made life very difficult for him (and us children) so that we have had to play catch up hard in the last two years e.g. he is today in a French court in Nice getting a "Tutelle" (a sort of French power of attorney ) to unlock some of her investments to pay for her full time care into which she goes in less than 3 weeks. Those investments are in the Isle of Man and the bank there have not yet agreed to accept the Tutelle, although they probably will. This sort of thing should have been sorted out years ago but wasn't due to denial of the facts.

Buckle up, you're in for a rough ride I'm sorry to say. Feel free to PM any questions, I'm more than happy to help anyone at all about to go through this.
 
..her kidneys have packed up and she is now on dyalisis for the foreseeable future.. ..I know I should have googled side effects first and will do so now but wondered if anyone had experience.
Its ******* terrifying seeing you're mum losing the plot and am fearing the worse.
Bizarrely kidney and urinary tract infections can affect memory in the way you describe. We recently went though this with my grandmother. She’d be fine when her waterworks we’re in good order, and bafflingly confused when they weren’t.
 
I have just returned from a visit to a retired colleague of mine who is in the early stages of the condition. He took the odd service for me now and again when we were short of clergy and thanks to a new arrival the time has come to gently withdraw him due to this and the fact that he can no longer cope with taking a service. The unfortunate part is that his wife is in complete denial of his illness and got quite agitated when it was nicely suggested that as we have a new member of clergy in the parish he might like to enjoy his retirement in its entirety again. Looking from the outside it is quite heartbreaking to see. The problem is that it can become a safeguarding issue to put someone in a position that they are no longer capable of dealing with.

Sadly dementia in all its forms is something that I find myself dealing with on a very regular basis.
 
It's so sad to read some of the posts on here, but also heartwarming to read that the ARRSE community is upholding the family values that the Army breeds into us. I for one am heartened at the responses made to posts from folks going through agonies similar to me and Mrs Dave - thank you everyone, they are really appreciated.

Anyway, update on my post 142
Mid-June we were surprised to receive a letter from the neurological department with an appointment for further tests. Off we went and the consultant showed us the results of the scan and showed us how the cerebro-spinal fluid had affected Mrs Daves brain. He gave her either the MMSE test* or the Addenbrooke Test** which resulted in her getting a few of her answers incorrect. She was then subjected to a walking distance/time test whereby her gait was also measured.

All in all it was a totally different experience to the first meeting with the young doctor - it was conducted with humour, caring and was totally professional. The consultant was patient, answered all our queries and put Mrs Dave totally at ease.

As a result of the tests Mrs Dave has a pre-Op scheduled for this coming Monday, the following Monday (16th) she will be admitted for a procedure whereby they will drain spinal fluid over a certain time period and assess her again with the MMSE/Addenbrooke Test and the walking test. They will then compare the results with those taken at the first session in mid-June. Her stay in hospital may be two or three days, of which she is terrified as she is hospital-averse.

If there is a noticeable change in her demeanor they will then admit her to fit a gadget in her head which will drain the fluid and empty it into the stomach whereby it will disperse naturally.

One big problem - she has just said "I don't think I'll attend the pre-Op on Monday as its too hot!!!"

It looks as though it is going to be a struggle to get her to attend both appointments but I'm sure we will succeed.

For those interested, see here -
* MMSE test - Mini–Mental State Examination - Wikipedia

** Addenbrooke Test - Addenbrooke's Cognitive Examination - Wikipedia

I'll give you an update as and when.
 
... Sadly dementia in all its forms is something that I find myself dealing with on a very regular basis.
Sounds familiar. Met an elderly chap on the street yesterday, he's on a lone camping trip far from home looking unwell/confused. Frail and struggling anyway. We had a chat, he was looking for a camp site and he'd missed his bus stop. I asked how do you feel mate and he says not bad not great. You can't tell him to go back home if he's unwell, somewhere up north where he's come from. All you might do is gently hint at it. He said thanks and he'd think about it. He's got some balls and I'm wondering how he is.

A good friend's wife was diagnosed with Alzheimers recently, she's about 70 and they're both active. She couldn't remember where she'd been touring in their van that day. They both have rough times to come.
Two locals round here wander miles from their home going nowhere in particular. And they've changed considerably. Dementia is a right bastard.
 
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