Hi! A intro

[Norman]

Yes Lulu the double shower cabinet fits where the bath was with some room over..
Don;t forget that when it is installed ask SS OT to get grab rail s fitted.
Norman

 

[connie]

I had a third bedroom fitted out as an en-suite for Lionel three years ago.
He has been unable to get in or out of a bath since before he was diagnosed.

His spacial awareness is very bad, also mobility. We have fixed cradle around the toilet, and I have now removed the door to his bathroom, and replaced it with a curtain, just for privacy.

It is difficult to always try to stay one step ahead of the game. Good to share tips and experiences though. Regards, Connie

 

[angela.robinson]

hi all ,it is allso worth thinking about a wet room much easier than a cubicle,SS OT first made us try a bathing chair ,to swing over the bath/shower ,but JIM,USE TO GET PANICK ATTACKS IF HE WAS TRAPPED IN PLACE ,so we never used this ,it was agreed that a wet room could be put in and the bath taken out ,after some negotiations we used a spare bedroom for this ,it is wonderfull and spacious ,it took us 12 month to get it ,i know i was very lucky ,as they argued about how much use he would get from it ,i said in 7 years he was still well mobile and they funded it ,YES I KNOW ,HARD TO BELieve.unfortunatly his mobility did go rapid 5 months after ,if it could be fitted on the ground floor it could still have been used,with the aid of a wheel chair ,if you are thinking on these lines ,then sooner the better.ANGELA

 

[Anne54]

Hello everyone, we got a wet room as well but down stairs, we had to pay a little towards the cost but not a lot, it will be available when Fred has to move down stairs, if that happens. It took at least 12 months to get it.
Anne

 

[rummy]

Hi Elaine,
I had to approach my parents very carefully on the issue of power of attorney. I went to the bank manager of their bank to get information on the current laws and to find out what exactly would happen to their finances in the event one of the died. I passed the information onto my Dad and gave him the managers card. I filled the bank manager in on the delicacy of the situation and he handled it beautifully. It is my Mom that has Alzheimers and my Dad knew that she would be incapable of handling their business if he had a medical crisis or passed away. So he took care of it and we all feel much better now. You might go to the financial institution that handles your parents business and talk to them and then see if you can get your parents to go in for a chat. I just knew I didn't want my folks to think I was butting into their business and telling them what to do. Getting a third party to explain to them what would happen to their estate and/or finances and how complicated it could get without a power of attorney really did the trick.
Good Luck,
Debbie ( Rummy)

 

[ElaineMaul]

Hi Debbie,
I am lucky in that I have a very good relationship with my Mum. When we were at those early stages of getting my Dad assessed and wondering what might happen, the question of finances came up as just part of a conversation with my Mum. I might add, I remember with some trepidation the problems another friend had sorting out his Mum's finances ...... and I didn't want my Mum to have to go through those problems. My Mum knows me well enough to know that I would do anything to help make things easier and am not 'after their money' or whatever!

However, how to bring the subject up with my Dad? Well ..... it may have been a little devious but I deliberately 'just' brought the topic into a conversation when round my Mum and Dad's ..... brought up the problems my friend had had .... and suggested that they both fill out the forms as a precaution, just in the same way as you have a will (which they both have). Dad was fine about it!

Of course, I would have to add that my Dad has always tended to ask my advice about forms etc ....... this has got nothing to do with the memory problems going on for a long time ..... just that he left school at 14 and actually missed a lot of schooling because of a leg injury ..... so he has always been a little over-awed by forms etc. I've dealt with a lot of official things for him over the years (not that my Mum couldn't! My Dad can often take things from me where he won't from my Mum even though she's said the same thing as me!).

So, it's been one of those things where the 'family dynamics' have made things work out OK. Mind you, it is becoming very obvious that Dad takes things from me, but can react angrily with my Mum. She has the patience of a saint..... takes all in her stride as just part of the condition. Still ..... at least it enables me to feel I'm doing my bit to support them.

Elaine

 

[FionaW]

Hi, this is my first visit to this site. My Mum is 62 and has some form of dementia, and is going downhill very rapidly. I think she must be in the middle stage, as she has been 'a little off' for several years. In April she suddenly went downhill very quickly, her main problem is with immediate family, she did not know who I was for a long time, now it is my Dad she has problems with. She does not appear to be able to understand that one person can have many roles, ie Husband, Dad, Grandad, and sees him as several different people.

Dad isn't coping with this at all (understandably) and my husband and I keep getting late night phone calls from either Mum or Dad, and I have to explain to Mum who Dad is, and that he is not a stranger stealing the dogs, but Dad, taking them for an evening walk as he always does.

We are still waiting for a diagnosis, and consequently she has not received any treatment. I am just really scared at the speed she is deteriorating. Dad's health is not very good either, and I wonder how long he will cope. I feel the responsibility for both of them, as a working wife and Mum myself I don't know how I will cope. Sorry to ramble, but it's good to be among people who understand.

 

[Sandy]

Hi FionaW,

Welcome to Talking Point (night owl edition)!

There are many people here who will understand what you're going through.

Does your mother have a social worker (SW)? If not, can I recommend that you get her one as soon as possible. When my in-laws were in a situation somewhat like your parents', getting a social worker involved proved to be an extremely useful step.

I made the initial call and, to be honest, felt a bit strange about it at first, but the people on the other end of the phone were very helpful. I was directed to the borough's Older Person's Team and within four weeks had a meeting with the SW and my in-laws. The SW was great - she spent a lot of time talking to my in-laws and put together a care plan that involved a carer coming in three afternoons a week to give my mother-in-law a break or time to run errands.

You don't need a formal diagnosis to approach Social Services (we didn't have one at that initial meeting) - they assess based on support needed. They're also good at advising about things like benefits - your mum should probably be getting attendance allowance (fact sheet: here ).

It's hard at first to get "strangers" involved in "family" matters and it took my mother-in-law a bit of time to adjust. But now she says she doesn't know how she'd cope without that outside support (we live about 90 minutes away).

Take care,

Sandy

 

[daughter]

Hi Fiona,

A welcome from the Dawn Patrol too!

Sandy is right about people here understanding your situation. I for one can understand those first frightening feelings when you begin to realise that all the odd behaviours in your Mum (Dad, in my case) can probably only add up to one thing. Although you haven't had a diagnosis yet, you sound pretty convinced.

One of the hardest parts is seeing your Dad (Mum, in my case) having to cope with it all, (as well as living your own life) and trying to find out what you can do to help, without appearing to take over their lives for them. It may appear daunting, but take a deep breath, and begin where you can. Sandy's suggestion of contacting a Social Worker could be your first step.

This forum is the place for any questions or worries that you will inevitably have along the way, so keep reading and posting.

All the best,

 

[Michael E]

Norman hi,

Really interested that you went down the double shower route - I am busy trying to do the same as baths are a major problem with my wife - Got the building folks around to do the estimate for the bathroom revamp but it still waiting for the estimate and I bet it will take months to get the job started. Still I am glad to hear that the shower solution worked for you.

Getting more difficult now - nights are very disturbed with long conversations at 0300 with non existent or long dead people and a confusion of where she is and indeed who I am... (never been quite sure about that myself ) suffers from 'sweats' a lot and although it is pretty warm here in La Rochelle I suspect it is stress or similar... Went to the GP yesterday - really nice guy and gets on well with 'Madam' Sent us off for a range of blood tests - is talking about another brain scan and sent me to make an appointment with the neurologist for early next month - she happened to be talking to her secretary when I went in and was interested and concerned about Monique which is nice and gives me a feel good factor - after reading 'Dancing with Dementia' I was wondering if all these 'tests' achieved anything... Of course they don't and are probably/certainly are stressful for Monique but in a way I feel I need to know what's going on... bit selfish but it is so hard to know how things are going when you are so close to it... the abnormal becomes normal -

Sorry - just needed to waffle on a bit

Michael

 

[Lulu]

Following Norman's mention of double showers, we expect Mum's new shower to be fitted in October/November (a double one). It's going to be worth every last penny, I'm sure. Thanks Norman, and everyone.

 

[fizz]

hello, my names fizz, found this site this morning out of desperation to find the answers im looking for, what am i looking for i dont really know, my mum has had alzheimers for about 6 years maybe longer as we didnt know what it was at the beggining, not sure the doctors did too, any hows to cut a long story short shes been in a home for 5 years now, and i go to see her out of guilt because its not that i dont love her its because shes not my mum anymore, where my mum went i dont know, o dear the tears are coming now, anyway just wanted to hi and if its ok i will gradually make my way around the board and hopefully find a way of accepting this living hell that mum is suffering.

love fizz xxxxx

 

[TED]

Hello and welcome to TP hope you find some help and support amongst it all

I understand how you feel as it's a common feeling that your Mum has 'gone' but please believe me that she is still your Mum and though might not be able to visibily communicate or act like she did, deep inside she's still there. I cant explain it but when I am with my Mum she does still respond to me only in a different way. Certainely on the outside she's not the same, but I can still see a spark even if it's now and then. It's hard and I get upset a lot too (soft lad that I am) keep doing what you can.

Look after yourself too
TED

 

[Brucie]

Hi fizz

Welcome to TP!

its because shes not my mum anymore, where my mum went i dont know

of course we have no means of knowing exactly what happens to them.

I visit my wife most days and mostly she is a different person from how she always was. But some days I get glimpses of her humour, and her old self.

I believe she is still in there and the way I imagine it for myself is that she is in the same world, but has moved into a new house on her own. There is no telephone, but if I walk around the house at certain times of day on certain days, I can peer through the window and there she is!

Sometimes I can see her and talk to her through the window glass but I can tell she can't really hear me.

Sometimes I can see she is talking to me through the glass, but I can't quite catch what she is saying.

Sometimes we manage to connect and we understand each other for a few seconds. [that's a really good day]

Sometimes the windows haven't been cleaned and though she can hear me, she can't see it is me. But she still knows someone cares and talks to her.

I appreciate that many people would say all that is rubbish, but how many of those people have been in the same position, and tried to communicate over a long period? How many care enough anyhow?

I do admit it is a handy way of not feeling the need to visit, by saying "they are no longer the same person". Clearly you don't use that because, out of love, you still do visit! But many do, which is sad.

I always remember that, until someone had found the Rosetta Stone [now in the British Museum], nobody could understand the meaning of Egyptian hieroglyphics.

 

[fizz]

hi brucie and ted, thankyou for the welcome, yes your right im not feeling any differant to anyone else who have people they love with this illness, but its always nice to chat to someone who knows what your going through, and of course i will always go see mum, she might not know me but i still know her, she will always be mum.

love fizz xxxxx+

 

[BeckyJan]

Sympathy needed please

My husband has just jiggered up all the radiators - said they did not work! completely untrue as I had it set up ideally for the cold weather!!! At least he is now so tired having spent half an hour fiddling that he is fast asleep.

I cannot understand this extreme tiredness - he sleeps so much both day and night!! I asked the GP if this was due to AD and he just shrugged - I think he meant 'no'. Does anyone else experience this tiredness from their 'cared for'?

 

[daughter]

Hi BeckyJan,

My Dad used to sleep a lot when he was at home, but he would also get up in the middle of the night, get fully dressed and sit in the armchair.

There have been a couple of threads with reference to this lately ('sleeping' is highlighted in red):

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1514&page=1&highlight=sleeping

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=2400&page=1&highlight=sleeping

I'm not sure what to suggest about the radiators though, hope you can reset them.

Best wishes,

 

[inmyname]

My Mother insisted her radiators were not working , the heater would not stay switched in yet when checked they were all fine and the room temperatures were over 80degrees

If you phone and cant get answers and then eventually she answers and tell her you have tried all day ..........she responds .... that no one had been in all day

I take this to mean she had been sleeping all day because i know she had not been out

 

[Grandaughter 1]

Hello everyone,

My Grandad is 83 and just been diagnosed with Alzheimer's althought has probably had it for over 5 years. My Nan was in denial and wouldn't admit to herself that there was a problem.

I'm at a bit of a loss on what happen's now and what support is available. Grandad has a "mental health doc"? assigned to him. I don't know what his medication is called but he was on a dosage of 5 (mg?) and he was put up to 10 last week and it totally freaked him out! He was really spaced out and I think it scared him. He refused to take any more pills until the doc came round. He is now back on 5. He can't be left alone, he wakes up in the night and thinks its morning, he's poo's himself once or twice a week and when he wee's always misses the toilet. He keeps putting the bins out for bin day when it isn't which really annoys my poor Nan (bless her) He seem's to sign words rather than speak them and he always seems to be slumped in his chair asleep. Is this all normal Alzheimer behaviour?

I'm a bit anxious today as Grandad collapsed in town yesterday with Nan and came home in a taxi. Last night he was burning up and when he got up for a wee Nan had to practically carry him. He seem's better this morning and Nan has called the doc. Has anyone any idea's what could be wrong? I'm worried in case it is a stoke or something to do with a thrombosis which he's had before.

Anyway that's my story. Any tip's on practical things especially Day care centres, other help and whether we need to do the power of attorney thing (they've got joint bacnk accounts) would be great. xx

 

[connie]

Hello grandaughter, warm welcome to TP. You are having an upsetting time at present. Sounds as if your grandad has been assigned a CPN (Community Psyciatric Nurse), if so she is the best one to start the ball rolling as to "day care" etc.

The symptons you describe are very typical of Alzheimers, so do try not to worry. NOT SURE about the collapse though. You can find some very usefull Fact sheets, at top left hand corner of the Home page. Just click on the link.

Do not forget the Alzheimers helpline: 0845 300 0336
Lots to take in on a first visit to forum. Now you have introduced yourself a short question in the main forum should soon bring some good advice. Take care, Connie