Tonight I actually snapped

[Dave K]

I was going to go but...... gosh how strange J used to say "Why are you doing this" at bedtime (winding down time) .... but sometimes he'd add "I wish you'd F off"

I don't know why I'm smiling now, it made me so very sad at the time...
It must be the love I had for him, even with the VaD. I knew it wasn't really him

It is a dilemma isn't it

Humans want to live for ever and there is an inbuilt self preservation switch in all of us "Fight or flight" but there is also reasoning, compassion, understanding and learning (in no particular order) it's just that as AD goes from year to year, then month to month then day to day (in the later stages)

This switch seems to get turned of quite early, say in the month to month stage where absolute and total denial, reasoning, understanding and learning are switch to the "off" position

As a carer, observer or passing stranger this is totally incomprehensible, alien and not the norm which we, as carers have to learn to live with, as hard as it gets, there is nothing we can do about it

We have to work around it somehow however, departments such as the Social Services should understand how draining it is to look after someone with this awful disease with priority on duty of care to the unpaid carer rather than on human rights of the sufferer

I am not saying "Lock them all up" what I am saying, if you are an unpaid carer (especially a 24/7 one as I am) there should be mandatory (say 2 days a month) full cover so the the unpaid carer can take 1 day off every 2 weeks, this is what I believe would help me to help my wife

 

[Wolfsgirl]

Not too much to expect or ask for xx

It is a dilemma isn't it

Humans want to live for ever and there is an inbuilt self preservation switch in all of us "Fight or flight" but there is also reasoning, compassion, understanding and learning (in no particular order) it's just that as AD goes from year to year, then month to month then day to day (in the later stages)

This switch seems to get turned of quite early, say in the month to month stage where absolute and total denial, reasoning, understanding and learning are switch to the "off" position

As a carer, observer or passing stranger this is totally incomprehensible, alien and not the norm which we, as carers have to learn to live with, as hard as it gets, there is nothing we can do about it

We have to work around it somehow however, departments such as the Social Services should understand how draining it is to look after someone with this awful disease with priority on duty of care to the unpaid carer rather than on human rights of the sufferer

I am not saying "Lock them all up" what I am saying, if you are an unpaid carer (especially a 24/7 one as I am) there should be mandatory (say 2 days a month) full cover so the the unpaid carer can take 1 day off every 2 weeks, this is what I believe would help me to help my wife

 

[bilslin]

Its got to be hard for you Dave, caring 24/7. But I live across from my mum and can escape a little. Sometimes I wish that I lived on another planet. I went to a carers course awhile ago. And they kept saying that we the carer was, most important. Because if we have a melt down then who will do the caring then. Got to admit since I've got mum into day centre, I feel like I'm not sinking. But all this help they say that there to help all takes time to put into place. Talking to the pros is hard going but its the only way to get the help. Stay with it, someone with a bit of since will pick up that you and Mrs D need help. Chin up Dave. lindax

 

[Dave K]

Not too much to expect or ask for xx

Sarcastic or agreement?

I am great at reading facial / body mannerisms (this is my curse I was born with) so are you being Sarcastic or in agreement to my suggestion / proposal? (I am sure it is the latter though)

As if my suggestion / proposal would even be considered within the social care system anyway

 

[Dave K]

Its got to be hard for you Dave, caring 24/7. But I live across from my mum and can escape a little. Sometimes I wish that I lived on another planet. I went to a carers course awhile ago. And they kept saying that we the carer was, most important. Because if we have a melt down then who will do the caring then. Got to admit since I've got mum into day centre, I feel like I'm not sinking. But all this help they say that there to help all takes time to put into place. Talking to the pros is hard going but its the only way to get the help. Stay with it, someone with a bit of since will pick up that you and Mrs D need help. Chin up Dave. lindax

Yep, being a 24/7 carer, working from and living in the home is not the best ideal situation for both the carer or sufferer Linda

I have come to the conclusion my circumstances are not going to get better anytime soon, but I live in hope

Guessing, I would say each month of care I give I loose two months from my life expectancy, My opinion only and only as I have felt so down over the past few weeks

On a good note though, You lovely folk are lowering these odds to 1-1 as when the wife finally goes to bed, I can sit here and talk to my unknown friends which makes me feel a ton better in myself

So thanks, you are prolonging my life...

 

[Dave K]

Just thought of something else that happened today...

The SS assessor also suggested to me that maybe the problem was that I sit on my PC all day which is causing the anxiety with my wife, wife obviously agreed

However to put her straight I said, I work from home as I would in an office from 8am to 6pm so if I was in an outside office I would be away from my wife longer, taking in maybe a 30 minute journey to the office then the same again to get back home

I also said that during this time, I also, wash clothes, hang them out, bring them back in, do all housework from the roof to the floor, take the dog out twice a day, tend to my wife's needs, Prepare and cook all meals, wash the pots, dry then put them away

Also I have to do normal household maintenance at weekends, pay all bills on time as well as every other chores that married couples and families share, I do the lot

My wife, wakes up, goes out on the bus, comes back and expects me to be there for her every immediate need

The SS reply was "Well maybe you could spend more time with her"

Blooming heck, now I have written this I now know why the heck I have been so tired at the end of the day, every day for the past 12 months

Sorry if folk find my reply to reply to my own posts are a bit over the top, it is just that I would like to catalogue everything to help other carers to understand how hard it is and to my kids, step-kids and grand-kids that no matter what opinions they have of me been told by others, I was there to look after my wife, their mother, their grand mother

 

[Dave K]

Wife just up again (9:49pm) Eating cereal

Here we go, question, questions, questions...

Turned my music off as that will prolong the agony

Was listening to Whitney Houston album (the ultimate collection) and Rita Ora album (The New Classic / Deluxe Version) playing a mix of randomly selected songs from each album

When do I get MY time?...

 

[Chuggalug]

Will reply to all later, cooking tea for 4

Re: Please get your GP involved. My heart goes out to you, Sharon x

The same doctor that I went to and told him that I had chickenpox 10 years ago when my son caught them and I never had them, ever

That same doctor that nearly killed me 10 years ago....

I have no faith in Doctors (well mine specifically) and definitely a jump upstart of a SS employee

Oh my good grief. Your situation, then is horribly close to mine. That's exactly where I am. In fact, the surgery only ever ring me to find out if my or my husband smoke. That's been going on for the last three years if not longer, and I'll be (rude word) if I'm giving information out about my husband. Kidding me? He's got dementia and emphysema and neither are being treated. And they want to know if we smoke.

This is part of why I won't give info on the hell I've been through.

When do you get your time? I sit on here at night, making sure I play with my new studio I've put together. Luckily, hubs does go to bed during the night and when he does, I';m in here with headphones on and microphone at the ready. If I didn't do that, I'd go bonkers myself. Glad to hear you've listened to some music today, Dave, and I've got Get Down Shep!

 

[bilslin]

in the 9 years I've cared for my mum not one of the pros have ever said I should spend more time with her, blimey how much more time can you spend with you wife. Where's this SW coming from. What if you had to out to work, would she be telling you to pack up work. Lets face it Dave ss should be helping you back off abit before you go off your head completely. The word support comes to mind and the moment your not getting loads. Except your son sounds like he's n your corner thank goodness. I've got to sons, that are good boys and great company. They too have both got girlfriends. So my house seems quite full at times, takes me away from living with AD for abit. In my mind I've tried to things in order. A while ago things got really bad with mum and I waste coping. AD seems to creep up on you and bite you in the bum when your not looking. Sometimes it has to get worse before it gets better. So heres hoping its going to get better your end. All us here on TP one time or other get like it, is this horrible illness. My parents lived about 15 miles away from here, when my dad got really ill he wanted to move over here so my mum wasn't on her own, he died3 years ago now and I'm left with taking care of a mum. Who never give me the time of day when I was a kid, don't get wrong I was always and well dressed but it was all about my brother. Funny what life throws at ya. My mates all's turn to me when theres trouble, I'm suppose to be the stong one. But with this AD its something else. Lets hope you get some peace soon Dave. We all need it. linda

 

[Dazmum]

Flipping neck Dave, I've been on here several times today and just have been speechless at what the woman said to you, just unbelievable. When the CPN from the mental health team, psychiatrist and social workers have assessed my mum in the past, they have, with the exception of one, spoken to me afterwards to verify or not, what she has said. It's got to be an intrinsic part of an assessment? The only time I wasn't around a report was written that was full of innacuracies but hadn't been queried. I just don't understand it, and I really hope you do take it further so you can get help. Do you think your wife's daughter might take her again even for a day or a weekend, when her hand is better? Your son sounds great, might he act as a bit of an intermediary for you, or wouldn't that be fair to expect of him?

 

[Dave K]

in the 9 years I've cared for my mum not one of the pros have ever said I should spend more time with her, blimey how much more time can you spend with you wife. Where's this SW coming from. What if you had to out to work, would she be telling you to pack up work. Lets face it Dave ss should be helping you back off abit before you go off your head completely. The word support comes to mind and the moment your not getting loads. Except your son sounds like he's n your corner thank goodness. I've got to sons, that are good boys and great company. They too have both got girlfriends. So my house seems quite full at times, takes me away from living with AD for abit. In my mind I've tried to things in order. A while ago things got really bad with mum and I waste coping. AD seems to creep up on you and bite you in the bum when your not looking. Sometimes it has to get worse before it gets better. So heres hoping its going to get better your end. All us here on TP one time or other get like it, is this horrible illness. My parents lived about 15 miles away from here, when my dad got really ill he wanted to move over here so my mum wasn't on her own, he died3 years ago now and I'm left with taking care of a mum. Who never give me the time of day when I was a kid, don't get wrong I was always and well dressed but it was all about my brother. Funny what life throws at ya. My mates all's turn to me when theres trouble, I'm suppose to be the stong one. But with this AD its something else. Lets hope you get some peace soon Dave. We all need it. linda

Hi Linda

I find it amazing that I have read so many hundreds if not thousands of posts where the sibling was the "Black sheep of the family" (Yep, I am the oldest and my Dad used to say this to me all the time as I way a boisterous boy in my early teens) but when it comes to care it is always the "Black Sheep" that turn into "White Knights" and still without any recognition.

I have promised the TP "Nagging Team" that I will not give up, I'm just taking a day or two out to charge my batteries then I will I will mount my steed with full Armour on (welling up right now just writing this) to take on the authorities

There are so many authorities, departments within those authorities that a carer has to go though, find, explore to get a solution and resolution

In 2014 you would think that there would be one agency, authority, department that could handle carers of AD needs and/or requests, why is it we have to jump through hoops to get help when one try fails we are told to move onto another source, tell lies, exaggerate the problems if necessary just to get help

The more I read, write and understand the problems for AD sufferers and all unpaid, volunteer carers over the past 12 months the more I realise that it is either deliberate delaying on the part of the powers to be or complete incompetence of the powers to be

 

[AlsoConfused]

Was wondering - other TPers - whether there are particularly effective advocates Dave could use (if he chooses to) to fight some of his battles with unhelpful officialdom?

 

[Sue J]

Was wondering - other TPers - whether there are particularly effective advocates Dave could use (if he chooses to) to fight some of his battles with unhelpful officialdom?

I think we should all phone the appropriate number for Dave's SS dept and express our extreme concern, get the Nagging Club nagging somewhere else

 

[Dave K]

Was wondering - other TPers - whether there are particularly effective advocates Dave could use (if he chooses to) to fight some of his battles with unhelpful officialdom?

I am willing to be an advocate (A person who pleads for a cause or propounds an idea) regarding Alzheimer's disease for both sufferers and voluntary unpaid carers alike.

I have just realised that my my goal in life is to better the inadequate services currently provided, offered and mostly denied to Alzheimer's sufferers and voluntary unpaid carers alike

My Goal is that no voluntary unpaid carer for an Alzheimer's sufferer is treated as I have been on my impossible journey for help, guidance, support and rest-bites

Alzheimer's is a terrible disease, it wrecks the lives of voluntary unpaid carers to the point of suicide especially if they are giving 24 hour support 365 days a year when Social Service assessments are based on penny pinching tactics and "Red Tape"

My first 3 Questions are:

1. Why does it take so long to be diagnosed with a brain disease? (Average is around 6 months)
2. Why are carers left at the bottom of the deck to fend for themselves?
3. Why are carers human rights not taken into account?

 

[Sue J]

I think you do want something Dave - change things must change

I hope you get some rest tonight

I know the battle has started and you will enter the breach again as soon as you are able.

Best
Sue

 

[nita]

Regarding respite breaks, is it absolutely necessary to get Social Services involved? It all depends if you are eligible for funding (your wife's share of your finances will be assessed); if not you might as well find a place yourself although I don't know, in that case, whether it has to be authorised just the same by a social worker or doctor.

I have found a list of care homes in your area, some of whom offer short respite breaks.

http://www.carehome.co.uk/care_sear...otherham/searchchtype/alzheimers-and-dementia

I know the difficulty will be persuading your wife she needs to go for a break to give you a rest. I think it best not to mention your own side of things or to tell her how hard it is for you as she won't understand. The sufferer seems to lose all empathy or understanding of those around them, especially as they are unaware of their own condition. Depending on how far she is aware, could it be phrased as a short holiday in a hotel. I can see that this may be your main problem and perhaps you would want the authorities to handle the situation. They would not tell her why she is going into care but do it in such a way that she would, hopefully, accept it. I am not saying it will be easy. My Mum went very unwillingly to a local care home for a stay but she didn't have the wherewithal to leave, such was the stage she was at, plus she had restricted mobility. I am not sure your wife could be kept against her will.

Thinking about your situation, respite may not be the solution. It may be that a day centre place several days a week would be one part-answer as it would give you a break at least some of the time. The carer's assessment should identify your need to work and help you to achieve that.

I would write a letter of complaint to Social Services about the way you have been treated. The person who visited you certainly does not sound competent to assess someone's mental state. Those questions are not the ones the Memory Service would ask as they are most likely to be answered correctly by anyone. My Mum in late stages still knows her date of birth. It must be one of the last things to go.

You really need to speak to someone alone, independent of your wife. If possible, keep any dealings with the GP or authorities away from your wife; don't tell her what you are doing as she is bound to be paranoid about it (it goes with the territory). Is it possible to see a different GP from the one you distrust?

I think you should try to hang on till her scan and assessment in early July. You will need to speak to the doctor separately from your wife about her problems as you don't want any accusations/recriminations from her. Is it possible to disguise from her the purpose of the appointment? i.e. it's just a check-up, not a memory assessment?

These are just my ruminations. Hope they may be of help in trying to decide what to do/what sort of help to ask for.

 

[Raggedrobin]

Good on you Dave, fighting talk. One of the things I think is so wrong re dementia is that there isn't a one stop support system that kicks into place as soon as a diagnosis is made. i remember feeling so alone with the problem and also surrounded by health professsionals who were ignoring what I was saying about mum. But I got there in the end, and now have very good support.

 

[nita]

Community Care Assessment

Further to my above post, I can't understand why your wife has not had a proper assessment. Have you read the leaflet provided by the Alzheimer's Society:-


http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

Potential problems with arranging an assessment

A person should not be refused an assessment for any of the following reasons:
• The local authority believes the person will not meet its criteria. Most local authorities will filter those approaching them for support, but they must not screen out people without obtaining adequate information. If it can be shown that the person may need services, then an assessment must be carried out. They may refer the person to non-local authority services where appropriate. However, screening on the telephone is not appropriate for people with dementia and it is important for them to have their needs assessed in person.
• They do not have enough staff to carry out an assessment.
• The person has enough income or savings to pay for their own care services.


If the request for an assessment is refused, the person, their carer or relative should write to explain the circumstances in more detail, or they can ask a professional or advice agency to write on their behalf. If they are still unsuccessful, they can make a complaint (see 'Making a complaint', below).

Making a complaint
If the person with dementia or their carer has a complaint, it is advisable to try to sort it out with the person they have contact with, such as the assessor or care manager. There may simply have been a failure in communication or a misunderstanding that can be easily rectified. However, if this is not successful, there is a local authority complaints procedure. The local authority will explain how to use this. The complaints procedure might be useful if:
• there are problems arranging an assessment
• there is an unreasonably long wait for an assessment
• the services needed are not provided, or are unsatisfactory.
If the local authority complaints procedure does not resolve the issue either, you can take your complaint to the Local Government Ombudsman (see 'Useful organisations' at the end of this factsheet).


I think you must push for an assessment. In the first instance, go back to the Adult Services dept. of Social Services and ask to speak to the manager of the person who visited you. You will now be on their database of cases so they should be able to quickly refer you to the right person. You need to explain exactly why you and your wife need assessments.

 

[Dave K]

Ahhh,I read and re-red my post and have edited it to the point of OCD editing but I am finally happy with that post now, initially posted at 10:56pm but final editing was completed at Midnight

Here is the last updated change:

I am willing to be an advocate (A person who pleads for a cause or propounds an idea) regarding Alzheimer's disease for both sufferers and voluntary unpaid carers alike.

I have just realised that my my goal in life is to better the inadequate services currently provided, offered and mostly denied to Alzheimer's sufferers and voluntary unpaid carers alike

My Goal is that no voluntary unpaid carer for an Alzheimer's sufferer is treated as I have been on my impossible journey for help, guidance, support and rest-bites

Alzheimer's is a terrible disease, it wrecks the lives of voluntary unpaid carers to the point of suicide especially if they are giving 24 hour support 365 days a year when Social Service assessments are based on penny pinching tactics and "Red Tape"

My first 3 Questions are:

1. Why does it take so long to be diagnosed with a brain disease? (Average is around 6 months)
2. Why are carers left at the bottom of the deck to fend for themselves?
3. Why are carers human rights not taken into account?

I will continue this fight thanks to the 'dippy' SS assessor that came into my home this morning and simply fobbed us off

I am determined, if it kills me to make a difference

"Here lies Dave K who made a difference"

 

[Dave K]

Good on you Dave, fighting talk. One of the things I think is so wrong re dementia is that there isn't a one stop support system that kicks into place as soon as a diagnosis is made. i remember feeling so alone with the problem and also surrounded by health professsionals who were ignoring what I was saying about mum. But I got there in the end, and now have very good support.

I am really happy that you have the support you should be entitled to but you had to jump through hoops to get it based on your post

There should be a "One stop support system" (as you have called it) for sufferers and unpaid carers without having to jump through hoops.

My goal is to remove these barriers and I will do so in my lifetime or I am not called Dave (alias MEGA MAN)