Impossible situations

[markdohle]

Impossible situations

There are human situations that are simply impossible. I suppose for caregivers, whether they are working with a family member or friend, or like myself, who works where there are more than a few patients; situations arise wherein there is no solution, but something that has to be accepted and lived through. The impossible situation is dementia. Working in any situation that requires patient endurance, and care giving is not by any means the only place where this is needed, can be taxing. However, working with someone with dementia does have certain challenges, which are emotionally draining and painful.

Those with dementia can be at times very peaceful and corporative. At other times violence is met and strong resistance. In both situations it has nothing to do with the one taking care of them. Care givers are interchangeable and equally unknown to many dementia patients. They are often mistaken for someone from their past. For instance, with William I am often mistaken for ‘Tommy’; a former band member I believe. With Ron, I am mistaken for ‘Marvin’, who I believe is a friend from his teen age years. It is when they don’t know who is taking care of them, even if it is a family member; that troubles can start.

It is amazing how strong we become when angry or frighten, no matter what our age or physical condition. There are mornings with William when he is very peaceful and even helpful when I need to do his early morning cleaning. Then there are those mornings what I call “the impossible situations”, where he is frighten, does not know who I am, or where he is, or for that matter, does not remember the 3,000 or so times he has been cleaned while being here. It is a new experience as far as he is concerned and it frightens and angers him. So he kicks, tries to bite, or spit and when he can get old of my hand or arm, he squeezes. When with others it can be difficult, but when by myself well “impossible” almost, for the job does get done; just takes a little more time..

It is the restraining that I hate. Having to hold down his arms and when he resists some more I have to use a bit more pressure. It does not hurt him, but it does me. I guess this is probably one of the worst parts of being a care giver. Doing the simple tasks that have to be done everyday, two or three or more times a day. I guess there are hundreds of thousands of people who have to deal with this on a regular basis, some of whom have no help, no break, a 24/7 job… for them I feel only compassion.

In many families, one sibling, or parent, is designated the caregiver and will often be left alone with very little help if any from other family members. It is a complex situation, for the caregiver may reject help, and then complains when no help is given; yes another ‘impossible situation”. The stress on one person is often underestimated by other members of the family, which can lead to tragic results. In some families, some caregivers actually die before the one being taken care of.

There is a tidal wave coming for our country and the workers needed to take care of this tsunami are diminishing. In nursing homes, CNA’s are often overworked with too many patients to care for and are given little pay. Those who care for the well being of those they take care of and frustrated because of the care they cannot give, often quit, preferring to do home care. Care can be spotty for those in nursing homes and when burn out occurs for the workers there, abuse can often be a problem.

It seems most of us want to live long lives, which is good, but it is often forgotten that most of us who makes it to old age, will need to be taken care of at the end. For some it will be a short time, for others it could be years of care. Now this is an ‘impossible situation’ for sure. There is no answer, perhaps we will find one when the wave hits. We are already feeling the beginnings as we baby boomers age. In about 10 year’s time, at the latest 15, we will be in the thick of it. I am not overly pessimistic however. For at bottom, even if we are far from perfect, we are a species that does care for its weak and sick. Perhaps like most problems that need to be dealt with, we do better when backed into a corner.

[Orcseeker]

My grandmother preferred death over losing her mind like this. She got her wish and I am happy that it happened. I would prefer the same. In Australia, the number of cases of dementia are to increase greatly in the next 60 years. I don't know why people would keep their family members in this state, I find it cruel.

I believe euthanisation should be legalised globally and individuals should have a choice. They should be able to sign a document claiming they are to be euthanised prior to any loss of control of mind (dementia).

[markdohle]

My grandmother preferred death over losing her mind like this. She got her wish and I am happy that it happened. I would prefer the same. In Australia, the number of cases of dementia are to increase greatly in the next 60 years. I don't know why people would keep their family members in this state, I find it cruel.

I believe euthanisation should be legalised globally and individuals should have a choice. They should be able to sign a document claiming they are to be euthanised prior to any loss of control of mind (dementia).

I see your point, however it is not all bad for those with dementia,they also have good days, happy ones and often live in the past. However it can be a long drawn out affair.

Peace

mark

[Trog]

Nicely said Mark , and I know exactly what you're going through , however , I don't believe that dementia is a sickness brought on by a particular lifestyle or something passed along through faulty genes , lets face it humans have been around for a long time and no cure has yet been found .... And another thing , this condition in my experience isn't found in those on the double digit pathways .

It all boils down to one simple explanation , it's an experience that we all have to go through , I know there are many causes of memory loss , but the common one that we call Alzheimer's is in my opinion an agreed to condition , agreed to by us .

I have no idea why this is an experience that we need , but , by and large the patient is oblivious to the condition and so the patient is in no distress or discomfort , and not all patients are recalcitrant .

I wish I knew more about the mysteries of life , but I'm still learning and I know this for sure , most of us while still in Spirit will enter into an agreement with another Spirit , one whom we've reincarnated with many times , to help us through a particular life of hardship including Alzheimer's , but the problem is one of Freewill , that person who agreed to do the looking after mostly always reneges on the deal .

[Orcseeker]

I see your point, however it is not all bad for those with dementia,they also have good days, happy ones and often live in the past. However it can be a long drawn out affair.

Peace

mark

But the next day they won't even remember it, that's not right to keep someone alive like that

[markdohle]

But the next day they won't even remember it, that's not right to keep someone alive like that

Well, ok, again I understand, however who is to decide? Dementia patience do have moments of lucidity, but I doubt if asked, that they would want to be killed, at least the majority of them would not. You are also taking about putting to death literly millions of human beings, I think there may be a morale component to that. Then there are those who have low IQ's, those who are bed ridden, would you also like them killed? I am not being argumentative with you, for you are speaking about one family member with compassion and love.......

You are also asking doctors to go against their vows of 'no harm'.

Peace

mark

[Still Waters]

In some families, some caregivers actually die before the one being taken care of.

That's what happened to my father-in-law.

I believe euthanisation should be legalised globally and individuals should have a choice. They should be able to sign a document claiming they are to be euthanised prior to any loss of control of mind (dementia).

That would only work while the person was in a 100% sound mind. With the early stages of dementia being difficult to diagnose, how would anyone know if that person really knew what they were signing? Or perhaps you mean everyone in the world should sign, just in case at some later date we lose our minds?

Well, ok, again I understand, however who is to decide? Dementia patience do have moments of lucidity, but I doubt if asked, that they would want to be killed, at least the majority of them would not.

Exactly.

[markdohle]

That's what happened to my father-in-law.

That would only work while the person was in a 100% sound mind. With the early stages of dementia being difficult to diagnose, how would anyone know if that person really knew what they were signing? Or perhaps you mean everyone in the world should sign, just in case at some later date we lose our minds?

Exactly.

Thank you friend for your clear thinking

Peace

Mark

[Orcseeker]

Well, ok, again I understand, however who is to decide? Dementia patience do have moments of lucidity, but I doubt if asked, that they would want to be killed, at least the majority of them would not. You are also taking about putting to death literly millions of human beings, I think there may be a morale component to that. Then there are those who have low IQ's, those who are bed ridden, would you also like them killed? I am not being argumentative with you, for you are speaking about one family member with compassion and love.......

You are also asking doctors to go against their vows of 'no harm'.

Peace

mark

Well I suggested earlier that they could sign a document before any signs of dementia are present where they have a sound mind and are capable of rational thought. So that is who would decide.

Edited January 2, 2012 by Orcseeker

[Orcseeker]

That would only work while the person was in a 100% sound mind. With the early stages of dementia being difficult to diagnose, how would anyone know if that person really knew what they were signing? Or perhaps you mean everyone in the world should sign, just in case at some later date we lose our minds?

Well, in countries capable of taking out that task. People should get an option when they are, say 40. And also be capable of changing thier choice anytime they like as long as they are capable of rational thought.

Sorry for the double post, im on my itouch and it is a lot harder to quote multiple sources.

[randym23]

My grandmother preferred death over losing her mind like this. She got her wish and I am happy that it happened. I would prefer the same. In Australia, the number of cases of dementia are to increase greatly in the next 60 years. I don't know why people would keep their family members in this state, I find it cruel.

I believe euthanisation should be legalised globally and individuals should have a choice. They should be able to sign a document claiming they are to be euthanised prior to any loss of control of mind (dementia).

I agree. We should also take the stigma away from suicide. Why obligate someone to live beyond their own will to live. It is their life. The idea that their life is somehow the property of someone else is just another form of slavery. A living will could take care of any gray areas as to a person's state of mind when it comes to euthanasia.

[Still Waters]

My grandmother preferred death over losing her mind like this. She got her wish and I am happy that it happened. I would prefer the same. In Australia, the number of cases of dementia are to increase greatly in the next 60 years. I don't know why people would keep their family members in this state, I find it cruel.

Because some of us are not willing to play 'God'. A person has the right to live, you can't just dispose of someone because they have something wrong with them.

[markdohle]

I agree. We should also take the stigma away from suicide. Why obligate someone to live beyond their own will to live. It is their life. The idea that their life is somehow the property of someone else is just another form of slavery. A living will could take care of any gray areas as to a person's state of mind when it comes to euthanasia.

Actually, a living will is a grey area and it is not binding on Doctors. Also if family goes against the 'will', doctors tend to go with the family. Often, I feel, what is really at stake is the desire not to have to deal with loved ones when they are very ill. Many do not visit them, which can make their final years much more painful than they need to be.

I work with those who have dementia and for the most part are very old for over 30 years. Let me tell you, they have lives just like anyone else. Good days, bad days and just oridnary days. There is an inner life and they do respond to love and caring, though they can be like infants much of the time...and yes may be living in the past, it is still their life...we all have happy memories. Many go to the time of their life when they were happiest. Live is a gift, also taking care of our elderly is also a gift. They have given much and they should be cherished and loved. Often, not always, they get neither.

Peace

mark

Because some of us are not willing to play 'God'. A person has the right to live, you can't just dispose of someone because they have something wrong with them.

Thank you friend, well said.

Peace

mark

[Tia]

I work in the health industry and already have told my family if I get to a certain stage please kill me.

I've been physically attacked on numerous occasions and I know that is part of the persons illness and I don't blame them.

If it get's to a level of severe dementia and basically I sit in a chair or bed all day, need people to feed me, bath and dress me and change my pad as I'm incontinent of both faeces and urine. Well in that case I'd much prefer to be dead. My choice!

[markdohle]

I work in the health industry and already have told my family if I get to a certain stage please kill me.

I've been physically attacked on numerous occasions and I know that is part of the persons illness and I don't blame them.

If it get's to a level of severe dementia and basically I sit in a chair or bed all day, need people to feed me, bath and dress me and change my pad as I'm incontinent of both faeces and urine. Well in that case I'd much prefer to be dead. My choice!

It is, the problem is getting the family to agee as well as the doctor. To withhold treatment at the request of the paitient is one thing, to ask a doctor or family member to kill you, well that would be something different all together. Most elderly know when it is time to become DNR and for the most part, I know I do, it is respected. As a cargiver, I could never take a life, not sure many would be able to. I have protected patients from procedures I knew for a fact they did not need. I am happy to say the doctors went along with me, but someone has to speak up strongly.....though again, I could not kill someone.

Peace

mark

Edited January 7, 2012 by markdohle

[Orcseeker]

Well, taking a life would be an extremely hard thing to do. I think, if you jut know its for the best of the person and it's their wish. Then I wouldn't see it as a horrible thing is have to do but one to put someone to rest the way they would like to. I could see it as setting them free.

[markdohle]

Well, taking a life would be an extremely hard thing to do. I think, if you jut know its for the best of the person and it's their wish. Then I wouldn't see it as a horrible thing is have to do but one to put someone to rest the way they would like to. I could see it as setting them free.

I see your point.

Peace

mark

[Tia]

Taking a life is a harsh way of putting it, but as I said for me personally if I was in that situation I would hope that someone could give me an injection or little drink that I'd just go to sleep forever on. You're not even there then, when you get that severe it's rare to have any current memories anyway.

It's surprising how many people enter into hospital NFR now. I think more people are talking it over with families at the start of whatever illness they have and they work out all the things they want or don't want done. They arrange their family situation and say goodbyes.

Most of these people I see in peace in their last few days, because they've prepared for everything.

[markdohle]

Taking a life is a harsh way of putting it, but as I said for me personally if I was in that situation I would hope that someone could give me an injection or little drink that I'd just go to sleep forever on. You're not even there then, when you get that severe it's rare to have any current memories anyway.

It's surprising how many people enter into hospital NFR now. I think more people are talking it over with families at the start of whatever illness they have and they work out all the things they want or don't want done. They arrange their family situation and say goodbyes.

Most of these people I see in peace in their last few days, because they've prepared for everything.

That is the main point. Families should be notified about any end of life choices, if not, trouble could ensue. It is all about intent. To stop meds is a choice anyone can make, to ask that no intervenous fluids is also ok. In fact many can't have them anyway, when the kidneys start to go or the heart, then intevenous liquids can only make things worse and and ver painful. However to inject someone, or to give them something to drink in order to 'kill' them, for that is what it is, is a lot to ask from anyone.

Peace

Mark

Edited January 8, 2012 by markdohle

[Ratte]

My mother had both Alzheimers and Dementia and I was her unwilling care giver for upwards of four years. Since I was an older teen at the time, the rest of my family gave me two options: Either take care of her or be homeless. I opted to take care of her. Forgive the text wall, grammar and spelling errors you are about to read because I am on mobile device and not proficient with the key pad. Growing up, my mother was not a kind woman, even before her descent into madness. Her brain rotting away only made things worse. At first it wasn't so bad. She would misplace things and accuse me of taking them. But then she started spending lots of money and the little money I made went to paying off her debts. My family saw no reason to help at this point. My mom soon started calling me by my older sisters name. My sister is twenty years my senior. After a rather painful visit to her neurolog ist, we learned her that being diabetic and consuming the ammount of sweets she was would only speed up the deterioration process. My older sister stepped in and took control of the finances, getting us groceries once a week. By the fourth day of every week, my mother had eaten every thing in the house except for the eggs and usually about half of one of the two gallon tubs of icecream my sister insisted on getting mom. This left me living on a diet of about two hard boiled eggs and whatever my friends felt like bring me that day, if anything at all. I tried to controll her sugar consumption, but that ended horribly as she stabbed me with a spoon infront of my entire DnD group... I'll spare you any more of the awful stories I could tell and just say it was Hell. I still have physical scars from the things she would throw at me, hit and stab me with, as well as mental and emotional scarring that it will take years to overcome. I still flinch when someone calls me the horrible names she did, even jokingly and have to consciously fight the urge to duck or protect my face when someone does something out of anger, even when it isn't at me. After all othat, I was kicked to the curb when my lousy excuse of a brother decided to put her in a home. I didn't even get a 'thanks'. And, honestly, I don't feel one bit bad for saying 'it's someone elses problem now.' I feel like I deserve an attempt at living a normal life.

[markdohle]

My mother had both Alzheimers and Dementia and I was her unwilling care giver for upwards of four years. Since I was an older teen at the time, the rest of my family gave me two options: Either take care of her or be homeless. I opted to take care of her. Forgive the text wall, grammar and spelling errors you are about to read because I am on mobile device and not proficient with the key pad. Growing up, my mother was not a kind woman, even before her descent into madness. Her brain rotting away only made things worse. At first it wasn't so bad. She would misplace things and accuse me of taking them. But then she started spending lots of money and the little money I made went to paying off her debts. My family saw no reason to help at this point. My mom soon started calling me by my older sisters name. My sister is twenty years my senior. After a rather painful visit to her neurolog ist, we learned her that being diabetic and consuming the ammount of sweets she was would only speed up the deterioration process. My older sister stepped in and took control of the finances, getting us groceries once a week. By the fourth day of every week, my mother had eaten every thing in the house except for the eggs and usually about half of one of the two gallon tubs of icecream my sister insisted on getting mom. This left me living on a diet of about two hard boiled eggs and whatever my friends felt like bring me that day, if anything at all. I tried to controll her sugar consumption, but that ended horribly as she stabbed me with a spoon infront of my entire DnD group... I'll spare you any more of the awful stories I could tell and just say it was Hell. I still have physical scars from the things she would throw at me, hit and stab me with, as well as mental and emotional scarring that it will take years to overcome. I still flinch when someone calls me the horrible names she did, even jokingly and have to consciously fight the urge to duck or protect my face when someone does something out of anger, even when it isn't at me. After all othat, I was kicked to the curb when my lousy excuse of a brother decided to put her in a home. I didn't even get a 'thanks'. And, honestly, I don't feel one bit bad for saying 'it's someone elses problem now.' I feel like I deserve an attempt at living a normal life.

I am sorry you had to go through that, I can see how horrible it was for you. I hope you have many years having a normal life.

peace

mark

[Fantailmoon]

i disagree whole heartedly with the option of assisted suicide for those with dementia..who are we to make any kind of judgement on people with dementia even if they had in there 40s made the choice..people change there minds all the time with decisions and this could be the case..people with dementia often use other words for other things and could at the moment of being put to death be wanting to live and we dont understand them..they understand a hell of alot more then we realise and as i have worked in this area for over 20 years i have seen what kind of life most have and it is not all bad..to be honest it is more hurtful for the relatives as they dont understand why there mother or father does not recognize them..still no reason for them not to live..i do understand the violence and this on a daily basis can be hard to deal with and i dont think it fair that families should just be made care for them as this is a very difficult thing for some to deal with and i hate to see youngsters stuck in a home caring for there parents as they have no life..my view on this is not only based on people in care as i have also nursed my nan and grandad as well as my own father till they died x

[markdohle]

i disagree whole heartedly with the option of assisted suicide for those with dementia..who are we to make any kind of judgement on people with dementia even if they had in there 40s made the choice..people change there minds all the time with decisions and this could be the case..people with dementia often use other words for other things and could at the moment of being put to death be wanting to live and we dont understand them..they understand a hell of alot more then we realise and as i have worked in this area for over 20 years i have seen what kind of life most have and it is not all bad..to be honest it is more hurtful for the relatives as they dont understand why there mother or father does not recognize them..still no reason for them not to live..i do understand the violence and this on a daily basis can be hard to deal with and i dont think it fair that families should just be made care for them as this is a very difficult thing for some to deal with and i hate to see youngsters stuck in a home caring for there parents as they have no life..my view on this is not only based on people in care as i have also nursed my nan and grandad as well as my own father till they died x

Thank you my friend!

peace

mark