Many years ago I found the information on this forum invaluable. I used to contribute regulaly until the 'care home' solution arrived and I felt I had nothing to offer.
I wrote the following for publication but by coincidence received a 'reminder' from the 'forum' and decided to do a cut and paste.
When I use the word Society, I do not mean the Alzheimer's Society, who I greatly admire, rather the people around us.
My situation is still ongoing.
Alzheimer's Collateral Damage
The problem with being involved with a family member, who has this dreadful illness, is that it is almost certainly going to cause the 'carer' mental, physical, and financial damage. Naturally, if your parent or spouse starts to show symptoms and is eventually diagnosed with Alzheimer's, your instinct is to show concern and help the sufferer in whatever way is required. This emotional response is normal but sadly can lead to the ruin of your own life. If anybody told you up front, the 'cost' of becoming a primary carer and later taking Power of Attorney, you would immediately and without question opt out.
Society chooses to demand of close relatives, that they eventually give up their lives, totally and utterly, to perform the function of carer.
Society chooses to financially destroy the spouse of somebody with Alzheimer's, by taking their half their livelihood away and sometimes requiring them to downsize their own home by more than half. That's right. Move into a property that is less than half the value of the property the carer and sufferer live in, if you need to move home.
Society requires that the spouse pays care home, fees between £40,000 and £80,000 a year, which is out of all proportion to the income of the couple and for the 'survivor/carer', to live on a fraction of that sum.
Society requires that having lost all your own freedom, possibly your work/career, ability to travel, play sports, be able to go out, have holidays, because you are trapped in the house night and day, from Monday to Sunday, all month long, all year long, with the only freedom being some strange 'time off' called 'respite'. This can go on for years, possibly decades and then Society will impose the final penalty of financial ruin.
'Carer' is a title that is emotive and suggests you are a 'good' person. It is a term most of us never used to describe themselves and do not see themselves in that role. When your spouse has a serious problem it is normal to want to help, so you do. This is a dreadful slippery slope that as the weeks, months, and years go by, will eventually take over your entire life. Put you in prison. Make you work hours which become years, in conditions that society, would think of as primitive and completely unacceptable.
It all starts quite easily and gently, like any good confidence trick. You are concerned about the 'odd' behaviour. You keep an eye on the sufferer. Gradually they cannot perform tasks like going shopping or house work. That's no problem. You shop and you clean and run the home.. Then you get a diagnosis of Alzheimer's or similar and start researching the problem and realising the prognosis is not good but think actually it's not so bad at that stage. The sufferer can be left in the house while you go shopping. They can go with you even drive their car. Then you begin to realise that the car driving is becoming dangerous. There is going to be a serious accident so you take the dreadful decision to remove their independent transport. It's a bit like playing God and is not a nice thing to do. Around this time, from afar, other members of the family start to criticise you for these sort of decisions. Ask anyone who has cared how little support they get from the rest of the family. The answer is almost no support but frequent criticism.
Travel with the ‘suffer’ becomes difficult. Leaving them alone in the house becomes a problem. Budget airlines do not guarantee seats together and the sufferer will become deeply distressed if you are not beside them, walking becomes a problem, it is hard to board the plane early. Budget airlines are in the business of making money not 'helping' disabled people. Why should they?
Any form of travel becomes a problem if only because of public lavatories. The sufferer cannot go to the toilet alone - so what do you do. Take them into your sex toilet or invade their sex toilet? When you want to go to the toilet yourself, do you leave them outside? Like the goldfish in the bowl swimming past the plastic castle and forgetting it, the sufferer will forget where you have gone and possibly panic or just wander off and get lost in the airport, train, bus station.
Don't forget the sufferer has become pretty irrational. Alzheimer's is a disease of the mind. Every case is different but all are loosing their memory and ability to function 'normally'. Anger, fear and a desire to 'go home' is commonplace. Where ever you go, out of the house, they will want to 'go home'. Worse still, whilst in the house/home they will still want to 'go home'. As the memory deteriorates the suffers appear to go back in time towards childhood. To a place with responsible parents, within a safe and secure home, which is not the current home. Escaping, 'to get home', is difficult to cope with. If you go out, you must lock the front and back doors or the sufferer will have 'escaped' and wandered off. Occasionally you will make a mistake, your house was not designed as a prison, and friends or total strangers will bring the suffer home to you or as you race around the streets you will find the them wandering lost, but not necessarily frightened. It's awkward in a public place to persuade them to come with you, when all they really want to do is to 'go home' - which is not your/their home, but some place that exists only in their childhood memory.
The feeding problem gets to the stage where they need help or at least a lot of patience. They can't handle normal cutlery and of course food is spilt. You begin to cut their food into manageable mouthfuls. Getting dressed and undressed requires assistance, as does reminding them where the toilet is. Incontinence starts with occasional problems, like peeing in the middle of a supermarket...
The entire slippery slope into you becoming a full time carer is starting... You are now stuck with the problem big time - of course the social services want you to continue – You now pay for professional help to come in and assist with morning dressing and washing. Whilst the professional carer was in you can rush to the shops.. Then help will be needed to undress the sufferer. The incontinence becomes scatological and you will no longer want share the double bed with excrement. People with Alzheimer's get lost going to the toilet be it night or day. They just do it anywhere, which must then be cleaned up, even in the wee small hours of the morning. A night’s sleep, not to feel constantly tired and stressed, is a basic human right. This does not exist for the carer of someone with Alzheimer’s.
From a concerned and helpful person worried about a loved one you are now a unpaid carer working 7 days a week and twenty-four hours a day. Your own career, aspirations, desires, in fact your whole life, has become obsolete - cancelled - finished. You have, without noticing it, become societies whipping person. The suffer is now in 'la la land' and you? – Well, you will find you are even feeling guilty for not doing enough! Ask any long term Alzheimer's carer and they will tell you the 'guilt monkey' is always there.
You will have needed to install showers to replace baths in the house. You will have got rid of carpets and lay vinyl tiles or similar that can be kept clean and hygienic. Getting excrement out of carpets is very difficult. You will have needed to start obtaining special foods, bowl, clothing not to mention paying professional help/carers, to come in so you can have a few hours off each week, Not each day because that is far too expensive, just to have a few hours to yourself during a seven day period.
Eventually you will not be able to go on and, if you are lucky, with the help of professionals, you will decide the time (acting like God again) has come to put the Alzheimer's patient into a care home. First you have to cope with the terrible guilt of making this decision and then you have to find the money to pay for it.
The perceived wisdom is to get the Alzheimer's sufferer to sign a Power of Attorney whilst they still know what they are doing. That is the biggest mistake you can make! I think a better plan is to ask the patient to make you a joint signatory to their accounts so you can access their pension etc when they become to ill to do it themselves. if you go down the POA route you will be asked to become an accountant, lay yourself open to all the greedy relatives who, from a distance, want to get their hands on the sufferers money. They can and will complain to the Court of Protection to make you tow the line.
If you have PoA and the Court of Protection, prompted by some greedy but inattentive relative possibly hoping to inherit from the sufferer, decides to investigate you, they will require full and detailed accounts. You cannot count the money you expended before the PoA was registered. You need bills for ever single item of expenditure. You must run separate bank accounts. Bills for changes made to the house. Apportion telephone bills, postage, heating etc etc because make no mistake about it, suddenly you are a full time accountant and your spouse or parent, now has a High Court looking after their financial affairs and they own half of everything you jointly own.
The remaining capital will be divided in half. If you sell the house to downsize or to move closer to the care home, then you must put half the money from the sale into a separate account to pay the care home fees. If you have for example, joint annuities, pensions, or buy to let property or whatever most married couples do to insure their retirement, suddenly you have a totally inequitable situation.. The Court will order them sold.
Your spouse will probably be in a deranged mental state in a care home costing for example £40,000 a year - £3000 + a month.
You perhaps live for around £20,000 a year, but unless you were a very high earner, there is no way in the world where, after tax, you have a joint income of £60,000 a year. But that is the minimum required for you both to live!
The Court of Protection will move in. If you both, for example, own a holiday home or rental properties that were purchased to provide your pension, the Court will insist that the fees for the care home must be paid. If you have a joint pension then half is forfeit for the care home fees.
To make these payments you will be required to sell off all property you jointly own. Of course you will get half, but what use is that? When you purchased a 'buy to let' or 'holiday home' all those years ago, it was a big investment. Now you have to pay capital gains tax, estate agents, lawyers and the monies you are left with, your half, are not enough to purchase replacement rental property or whatever. In fact the only thing you can do to replace the 'lost' income is to live off your half of the remaining capital until you become old or infirm.
So the financial ‘collateral damage’ is that in return for becoming a 'carer' you will have spent maybe a decade with no life of your own. Your retirement is ruined by care home fees which are out of all proportion with your income. The Court of Protection requires you to behave like a professional accountant and produce balance sheets accounting for every penny. If you move home you will forfeit the half belonging to your spouse and all your joint name investments must be disposed of to meet the care home fees.
The system is not just. It is grossly unfair.
It is time Alzheimer's is recognised as an illness and not just a problem.
Relatives do not become carers, albeit inadvertently, for monetary gain but there has to be some way of recompensing them, if only from the jointly owned estate and some consideration to stopping the mandatory sale of jointly owned properties.
I seek to warn people, following in my footsteps, of the dangers involved, when our society chooses to designate Alzheimer's as a 'problem' rather than an illness.
I wrote the following for publication but by coincidence received a 'reminder' from the 'forum' and decided to do a cut and paste.
When I use the word Society, I do not mean the Alzheimer's Society, who I greatly admire, rather the people around us.
My situation is still ongoing.
Alzheimer's Collateral Damage
The problem with being involved with a family member, who has this dreadful illness, is that it is almost certainly going to cause the 'carer' mental, physical, and financial damage. Naturally, if your parent or spouse starts to show symptoms and is eventually diagnosed with Alzheimer's, your instinct is to show concern and help the sufferer in whatever way is required. This emotional response is normal but sadly can lead to the ruin of your own life. If anybody told you up front, the 'cost' of becoming a primary carer and later taking Power of Attorney, you would immediately and without question opt out.
Society chooses to demand of close relatives, that they eventually give up their lives, totally and utterly, to perform the function of carer.
Society chooses to financially destroy the spouse of somebody with Alzheimer's, by taking their half their livelihood away and sometimes requiring them to downsize their own home by more than half. That's right. Move into a property that is less than half the value of the property the carer and sufferer live in, if you need to move home.
Society requires that the spouse pays care home, fees between £40,000 and £80,000 a year, which is out of all proportion to the income of the couple and for the 'survivor/carer', to live on a fraction of that sum.
Society requires that having lost all your own freedom, possibly your work/career, ability to travel, play sports, be able to go out, have holidays, because you are trapped in the house night and day, from Monday to Sunday, all month long, all year long, with the only freedom being some strange 'time off' called 'respite'. This can go on for years, possibly decades and then Society will impose the final penalty of financial ruin.
'Carer' is a title that is emotive and suggests you are a 'good' person. It is a term most of us never used to describe themselves and do not see themselves in that role. When your spouse has a serious problem it is normal to want to help, so you do. This is a dreadful slippery slope that as the weeks, months, and years go by, will eventually take over your entire life. Put you in prison. Make you work hours which become years, in conditions that society, would think of as primitive and completely unacceptable.
It all starts quite easily and gently, like any good confidence trick. You are concerned about the 'odd' behaviour. You keep an eye on the sufferer. Gradually they cannot perform tasks like going shopping or house work. That's no problem. You shop and you clean and run the home.. Then you get a diagnosis of Alzheimer's or similar and start researching the problem and realising the prognosis is not good but think actually it's not so bad at that stage. The sufferer can be left in the house while you go shopping. They can go with you even drive their car. Then you begin to realise that the car driving is becoming dangerous. There is going to be a serious accident so you take the dreadful decision to remove their independent transport. It's a bit like playing God and is not a nice thing to do. Around this time, from afar, other members of the family start to criticise you for these sort of decisions. Ask anyone who has cared how little support they get from the rest of the family. The answer is almost no support but frequent criticism.
Travel with the ‘suffer’ becomes difficult. Leaving them alone in the house becomes a problem. Budget airlines do not guarantee seats together and the sufferer will become deeply distressed if you are not beside them, walking becomes a problem, it is hard to board the plane early. Budget airlines are in the business of making money not 'helping' disabled people. Why should they?
Any form of travel becomes a problem if only because of public lavatories. The sufferer cannot go to the toilet alone - so what do you do. Take them into your sex toilet or invade their sex toilet? When you want to go to the toilet yourself, do you leave them outside? Like the goldfish in the bowl swimming past the plastic castle and forgetting it, the sufferer will forget where you have gone and possibly panic or just wander off and get lost in the airport, train, bus station.
Don't forget the sufferer has become pretty irrational. Alzheimer's is a disease of the mind. Every case is different but all are loosing their memory and ability to function 'normally'. Anger, fear and a desire to 'go home' is commonplace. Where ever you go, out of the house, they will want to 'go home'. Worse still, whilst in the house/home they will still want to 'go home'. As the memory deteriorates the suffers appear to go back in time towards childhood. To a place with responsible parents, within a safe and secure home, which is not the current home. Escaping, 'to get home', is difficult to cope with. If you go out, you must lock the front and back doors or the sufferer will have 'escaped' and wandered off. Occasionally you will make a mistake, your house was not designed as a prison, and friends or total strangers will bring the suffer home to you or as you race around the streets you will find the them wandering lost, but not necessarily frightened. It's awkward in a public place to persuade them to come with you, when all they really want to do is to 'go home' - which is not your/their home, but some place that exists only in their childhood memory.
The feeding problem gets to the stage where they need help or at least a lot of patience. They can't handle normal cutlery and of course food is spilt. You begin to cut their food into manageable mouthfuls. Getting dressed and undressed requires assistance, as does reminding them where the toilet is. Incontinence starts with occasional problems, like peeing in the middle of a supermarket...
The entire slippery slope into you becoming a full time carer is starting... You are now stuck with the problem big time - of course the social services want you to continue – You now pay for professional help to come in and assist with morning dressing and washing. Whilst the professional carer was in you can rush to the shops.. Then help will be needed to undress the sufferer. The incontinence becomes scatological and you will no longer want share the double bed with excrement. People with Alzheimer's get lost going to the toilet be it night or day. They just do it anywhere, which must then be cleaned up, even in the wee small hours of the morning. A night’s sleep, not to feel constantly tired and stressed, is a basic human right. This does not exist for the carer of someone with Alzheimer’s.
From a concerned and helpful person worried about a loved one you are now a unpaid carer working 7 days a week and twenty-four hours a day. Your own career, aspirations, desires, in fact your whole life, has become obsolete - cancelled - finished. You have, without noticing it, become societies whipping person. The suffer is now in 'la la land' and you? – Well, you will find you are even feeling guilty for not doing enough! Ask any long term Alzheimer's carer and they will tell you the 'guilt monkey' is always there.
You will have needed to install showers to replace baths in the house. You will have got rid of carpets and lay vinyl tiles or similar that can be kept clean and hygienic. Getting excrement out of carpets is very difficult. You will have needed to start obtaining special foods, bowl, clothing not to mention paying professional help/carers, to come in so you can have a few hours off each week, Not each day because that is far too expensive, just to have a few hours to yourself during a seven day period.
Eventually you will not be able to go on and, if you are lucky, with the help of professionals, you will decide the time (acting like God again) has come to put the Alzheimer's patient into a care home. First you have to cope with the terrible guilt of making this decision and then you have to find the money to pay for it.
The perceived wisdom is to get the Alzheimer's sufferer to sign a Power of Attorney whilst they still know what they are doing. That is the biggest mistake you can make! I think a better plan is to ask the patient to make you a joint signatory to their accounts so you can access their pension etc when they become to ill to do it themselves. if you go down the POA route you will be asked to become an accountant, lay yourself open to all the greedy relatives who, from a distance, want to get their hands on the sufferers money. They can and will complain to the Court of Protection to make you tow the line.
If you have PoA and the Court of Protection, prompted by some greedy but inattentive relative possibly hoping to inherit from the sufferer, decides to investigate you, they will require full and detailed accounts. You cannot count the money you expended before the PoA was registered. You need bills for ever single item of expenditure. You must run separate bank accounts. Bills for changes made to the house. Apportion telephone bills, postage, heating etc etc because make no mistake about it, suddenly you are a full time accountant and your spouse or parent, now has a High Court looking after their financial affairs and they own half of everything you jointly own.
The remaining capital will be divided in half. If you sell the house to downsize or to move closer to the care home, then you must put half the money from the sale into a separate account to pay the care home fees. If you have for example, joint annuities, pensions, or buy to let property or whatever most married couples do to insure their retirement, suddenly you have a totally inequitable situation.. The Court will order them sold.
Your spouse will probably be in a deranged mental state in a care home costing for example £40,000 a year - £3000 + a month.
You perhaps live for around £20,000 a year, but unless you were a very high earner, there is no way in the world where, after tax, you have a joint income of £60,000 a year. But that is the minimum required for you both to live!
The Court of Protection will move in. If you both, for example, own a holiday home or rental properties that were purchased to provide your pension, the Court will insist that the fees for the care home must be paid. If you have a joint pension then half is forfeit for the care home fees.
To make these payments you will be required to sell off all property you jointly own. Of course you will get half, but what use is that? When you purchased a 'buy to let' or 'holiday home' all those years ago, it was a big investment. Now you have to pay capital gains tax, estate agents, lawyers and the monies you are left with, your half, are not enough to purchase replacement rental property or whatever. In fact the only thing you can do to replace the 'lost' income is to live off your half of the remaining capital until you become old or infirm.
So the financial ‘collateral damage’ is that in return for becoming a 'carer' you will have spent maybe a decade with no life of your own. Your retirement is ruined by care home fees which are out of all proportion with your income. The Court of Protection requires you to behave like a professional accountant and produce balance sheets accounting for every penny. If you move home you will forfeit the half belonging to your spouse and all your joint name investments must be disposed of to meet the care home fees.
The system is not just. It is grossly unfair.
It is time Alzheimer's is recognised as an illness and not just a problem.
Relatives do not become carers, albeit inadvertently, for monetary gain but there has to be some way of recompensing them, if only from the jointly owned estate and some consideration to stopping the mandatory sale of jointly owned properties.
I seek to warn people, following in my footsteps, of the dangers involved, when our society chooses to designate Alzheimer's as a 'problem' rather than an illness.