Sunday 5 May 2013
The Dementia Diary: Stupid is as stupid does.
The Dementia Diary: Stupid is as stupid does.: Government has never made sense to me. I think it's a lot like Wal-mart, stupidity is a requirement for employment. The new model of a...
Stupid is as stupid does.
Government has never made sense to me. I think it's a lot like Wal-mart, stupidity is a requirement for employment. The new model of activity based funding for Alberta Heath Services is no different. Stupid, that's the only word to describe it, stupid.
The new model will be beneficial to some areas of health care in this province. It has the potential to speed up treatment time in hospital wait rooms and decrease surgery wait times and even simple procedures like ultra sound. It provides incentives for health care providers to ensure quality care. Pay for performance is another name for this payment model as it rewards physicians, hospitals, medical groups, and other health care providers for meeting certain performance measures for quality and efficiency. The quality and efficiency are rated on turn over and turn over times. The idea is that doctors and health service providers will see more patients because the more they see and the more they treat than more funding is available to them.
This funding model works well for long-term facilities that operate to rehabilitate an individual. 70% of the long-term facilities in Alberta are for the care of our senior citizens. Roughly 40,000 of those seniors have dementia. Dementia is a progressive disease, with no cure. Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living and lasts more than 6 months. Dementia is a terminal illness. Allison Redford, our premiere, knows what dementia is. Ron Casey, our local MLA, knows what dementia is. Fred Horne, the minister of health in Alberta, surely must know what dementia is and I'm sure, George VanderBurg, the associate minister for seniors, knows what dementia is. Yet, I have to wonder if they do, because they have applied this new funding model to long care facilities across the province knowing that 70% of those facilities are for seniors and knowing that 40,000 tax-paying Albertans have some form of dementia. Long-term care facilities and especially those that cater to seniors with dementia, don't have turn over, so the funding that they have been receiving in the past is now gone and they can't possibly qualify for additional funding with the new model. The name long-term care says it all. Long-term is self explanatory it means a patient is at the facility for a long term.
I have sent emails to all of those involved in the changes to the funding model. They have a standard answer written by the communications officer. It states 'the service provider at the facility where your mother resides, was made aware of the forthcoming changes in 2009. They have had 3 years in which to adjust their budgeting, costing and expense requirements accordingly. Therefore your concerns should be addressed to them'. Passing the buck, the one thing all politicians are good at. It isn't the service providers fault that the government is applying such a funding model to facilities that can't possibly rehabilitate those that reside there.
To manage the loss in funding, the society that runs my mom's facility did lay-offs from the top to the bottom. The loss of an executive position has no relevance in the care of my mother but the loss of a nurse or an LPN or a health care worker certainly does and everyone has noticed the difference. The staff that still have jobs are already tired and burning out. There are two workers and one nurse on a wing with 26 residents. The nurse is usually very busy giving medications and checking everything from minor to major complaints. In addition, the government, in their infinite wisdom now requires a tracking system for each individual patient that must be recorded daily and then input into a government database. It can take almost an hour to record and input the data required for 1 PATIENT, yes for 1 patient. The nurses work 8 hour shifts, there are 24 hours in a day there are 26 patients so everyday they are already behind. Then they fall further behind because there is only 1 nurse on the midnight shift for 3 wings that have 78 long-term care patients and she must input every report that hasn't been entered and make adjustments if there is any incident that happens in any of the three wings overnight. If you think that people with dementia actually sleep at night then you are wrong. The reports are sent to the government every two weeks and if any report is late or missing then there is no money given to the facility for that period. If a computer glitches up and the reports are not submitted then there is no money given to the facility for that period.. If a resident is rehabilitated and moves out of the facility during that period, then the government does give money to the facility and even more money. But in a 'dementia' wing, the only way out is by death and death doesn't meet the funding criteria so if a resident dies during that reporting period, then no money is given to the facility.
The nurses are busy but the government expects them to properly adhere to the medication requirements in a timely manner and do the residents reports and help with the basic day to day care of the facility residents. They don't have the time so the onus for the basic care of course falls on the tired shoulders of the health care workers. It takes anywhere from 20 to 45 minutes to wake, wash and dress a dementia resident. That is providing that the resident is agreeable, aware and in good spirits. The health care workers start waking residents up at 7:00 am. People with dementia sometimes get aggressive and it's near impossible to wash or dress them if they don't want to. They are like toddlers but in adult bodies and one person can't do it alone. People with dementia are confused and scared and don't remember faces and don't want someone that they view as a stranger touching them or helping them. Dementia patients are often very weak and feeble and can't help in any way. Needless to say, by noon some of the residents are having breakfast while others are getting lunch.
Most people with dementia either require to be fed or they are a choking risk and must be watched. Some will put too much food into their mouths because they have lost the ability to eat normally. Others won't eat and need encouragement and others might pocket the food in their mouths and could aspirate on it later and cause aspiration pneumonia. Again, there are 26 residents and 2 workers at breakfast, lunch and dinner. Any family or volunteer that comes during meal times to assist their loved one is so greatly appreciated. Some of residents that do require feeding are unfortunately getting cold food or have fallen asleep by the time a worker is able to get to them and they won't wake up. I know from experience that it takes a minimal of 30 minutes to feed a person who requires meal assistance.
In addition, most people with dementia are incontinent and require toileting. An adult diaper is changed in the same way that a babies diaper is. They are laid down, the dirty diaper is removed, they are cleaned, a fresh diaper is put on and they are redressed. With a baby it is actually quite easy, but not so easy with an adult. It is time consuming and often requires two workers and a mechanical lift to get the resident safely from their chair, to the bed and back again. Many dementia patients do use the toilet but they still require assistance and often it requires two workers to get them safely to, on and back from the toilet and change the adult pull-up if needed.
Then, again with their infinite wisdom the government has assured, under an act no less, that all residents of long-term care facilities will receive two assisted bathes or showers per week. To accommodate this there is a floater. The floater is assigned to do all the bathing or showering AND help with meals, toileting, lifting, portering AND covers breaks. There is one floater who works an 8 hour day/7 days a week. That is 56 hours and there are 78 residents that require bathing and as they are to get two bathes or showers a week, that is 156 bathes and showers. I take hour long bathes on a regular basis and even in a rush, I'll take a 20 minute shower and that's just my wet time and not including getting naked, towelling dry and getting dressed again. It takes close to an hour to properly bathe or shower a person with dementia. Again, not enough hours in the day or days in the week.
Forrest Gump said it best "Stupid is as stupid does". The new funding model is just about as stupid as stupid can get. I always took that line to mean that your character is defined by your actions, so our government representatives have very questionable characters. I am not impressed, in fact I am pissed off, really fucking pissed off. Those that know me, know I must be pissed off because I used the f-bomb. And I am really fucking pissed off. I'm pissed off because our seniors deserve better. I'm pissed off because a simple bladder infection can mean the end for a dementia patient and because they no longer can get toileted or changed regularly they are going to get infections. I'm pissed off because my mom needs assistance to get to the toilet and if she can't get a worker to help her she will go on her own and she might fall and break a hip or get a concussion, or something. I'm pissed off because our seniors might choke on a boiled egg. I'm pissed off because sometimes all a dementia patient needs is someone to hold their hand and no one has the time to hold their hand anymore. I'm pissed off because my mom has dementia. I'm pissed off because my dad is a senior. I'm pissed off because I too will be a senior someday. I'm really pissed off because right now, in some ER in the city, some bimbo is getting top notch medical care because she has a little infection from a botched manicure and my mom is anxiously awaiting for a worker to help her get dressed and into bed because she's tired. I'm pissed off because my mom has paid more taxes in her life time then the bimbo with a bad hang nail at the Foothills emergency room right now. Yep, I'm just pissed off.
That's why we organized the rally against cutbacks. I hope that you reading this will do the same where ever you live. The pay for performance funding system is prevalent in the US, the UK and Europe. More and more countries are moving towards this model of health care funding. That means more and more seniors will not get the quality of care that they not only deserve but that they earned. We have to do something and if we don't then we are stupider than the politicians. I'm not stupid, my mother didn't raise a fool.
The new model will be beneficial to some areas of health care in this province. It has the potential to speed up treatment time in hospital wait rooms and decrease surgery wait times and even simple procedures like ultra sound. It provides incentives for health care providers to ensure quality care. Pay for performance is another name for this payment model as it rewards physicians, hospitals, medical groups, and other health care providers for meeting certain performance measures for quality and efficiency. The quality and efficiency are rated on turn over and turn over times. The idea is that doctors and health service providers will see more patients because the more they see and the more they treat than more funding is available to them.
This funding model works well for long-term facilities that operate to rehabilitate an individual. 70% of the long-term facilities in Alberta are for the care of our senior citizens. Roughly 40,000 of those seniors have dementia. Dementia is a progressive disease, with no cure. Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living and lasts more than 6 months. Dementia is a terminal illness. Allison Redford, our premiere, knows what dementia is. Ron Casey, our local MLA, knows what dementia is. Fred Horne, the minister of health in Alberta, surely must know what dementia is and I'm sure, George VanderBurg, the associate minister for seniors, knows what dementia is. Yet, I have to wonder if they do, because they have applied this new funding model to long care facilities across the province knowing that 70% of those facilities are for seniors and knowing that 40,000 tax-paying Albertans have some form of dementia. Long-term care facilities and especially those that cater to seniors with dementia, don't have turn over, so the funding that they have been receiving in the past is now gone and they can't possibly qualify for additional funding with the new model. The name long-term care says it all. Long-term is self explanatory it means a patient is at the facility for a long term.
I have sent emails to all of those involved in the changes to the funding model. They have a standard answer written by the communications officer. It states 'the service provider at the facility where your mother resides, was made aware of the forthcoming changes in 2009. They have had 3 years in which to adjust their budgeting, costing and expense requirements accordingly. Therefore your concerns should be addressed to them'. Passing the buck, the one thing all politicians are good at. It isn't the service providers fault that the government is applying such a funding model to facilities that can't possibly rehabilitate those that reside there.
To manage the loss in funding, the society that runs my mom's facility did lay-offs from the top to the bottom. The loss of an executive position has no relevance in the care of my mother but the loss of a nurse or an LPN or a health care worker certainly does and everyone has noticed the difference. The staff that still have jobs are already tired and burning out. There are two workers and one nurse on a wing with 26 residents. The nurse is usually very busy giving medications and checking everything from minor to major complaints. In addition, the government, in their infinite wisdom now requires a tracking system for each individual patient that must be recorded daily and then input into a government database. It can take almost an hour to record and input the data required for 1 PATIENT, yes for 1 patient. The nurses work 8 hour shifts, there are 24 hours in a day there are 26 patients so everyday they are already behind. Then they fall further behind because there is only 1 nurse on the midnight shift for 3 wings that have 78 long-term care patients and she must input every report that hasn't been entered and make adjustments if there is any incident that happens in any of the three wings overnight. If you think that people with dementia actually sleep at night then you are wrong. The reports are sent to the government every two weeks and if any report is late or missing then there is no money given to the facility for that period. If a computer glitches up and the reports are not submitted then there is no money given to the facility for that period.. If a resident is rehabilitated and moves out of the facility during that period, then the government does give money to the facility and even more money. But in a 'dementia' wing, the only way out is by death and death doesn't meet the funding criteria so if a resident dies during that reporting period, then no money is given to the facility.
The nurses are busy but the government expects them to properly adhere to the medication requirements in a timely manner and do the residents reports and help with the basic day to day care of the facility residents. They don't have the time so the onus for the basic care of course falls on the tired shoulders of the health care workers. It takes anywhere from 20 to 45 minutes to wake, wash and dress a dementia resident. That is providing that the resident is agreeable, aware and in good spirits. The health care workers start waking residents up at 7:00 am. People with dementia sometimes get aggressive and it's near impossible to wash or dress them if they don't want to. They are like toddlers but in adult bodies and one person can't do it alone. People with dementia are confused and scared and don't remember faces and don't want someone that they view as a stranger touching them or helping them. Dementia patients are often very weak and feeble and can't help in any way. Needless to say, by noon some of the residents are having breakfast while others are getting lunch.
Most people with dementia either require to be fed or they are a choking risk and must be watched. Some will put too much food into their mouths because they have lost the ability to eat normally. Others won't eat and need encouragement and others might pocket the food in their mouths and could aspirate on it later and cause aspiration pneumonia. Again, there are 26 residents and 2 workers at breakfast, lunch and dinner. Any family or volunteer that comes during meal times to assist their loved one is so greatly appreciated. Some of residents that do require feeding are unfortunately getting cold food or have fallen asleep by the time a worker is able to get to them and they won't wake up. I know from experience that it takes a minimal of 30 minutes to feed a person who requires meal assistance.
In addition, most people with dementia are incontinent and require toileting. An adult diaper is changed in the same way that a babies diaper is. They are laid down, the dirty diaper is removed, they are cleaned, a fresh diaper is put on and they are redressed. With a baby it is actually quite easy, but not so easy with an adult. It is time consuming and often requires two workers and a mechanical lift to get the resident safely from their chair, to the bed and back again. Many dementia patients do use the toilet but they still require assistance and often it requires two workers to get them safely to, on and back from the toilet and change the adult pull-up if needed.
Then, again with their infinite wisdom the government has assured, under an act no less, that all residents of long-term care facilities will receive two assisted bathes or showers per week. To accommodate this there is a floater. The floater is assigned to do all the bathing or showering AND help with meals, toileting, lifting, portering AND covers breaks. There is one floater who works an 8 hour day/7 days a week. That is 56 hours and there are 78 residents that require bathing and as they are to get two bathes or showers a week, that is 156 bathes and showers. I take hour long bathes on a regular basis and even in a rush, I'll take a 20 minute shower and that's just my wet time and not including getting naked, towelling dry and getting dressed again. It takes close to an hour to properly bathe or shower a person with dementia. Again, not enough hours in the day or days in the week.
Forrest Gump said it best "Stupid is as stupid does". The new funding model is just about as stupid as stupid can get. I always took that line to mean that your character is defined by your actions, so our government representatives have very questionable characters. I am not impressed, in fact I am pissed off, really fucking pissed off. Those that know me, know I must be pissed off because I used the f-bomb. And I am really fucking pissed off. I'm pissed off because our seniors deserve better. I'm pissed off because a simple bladder infection can mean the end for a dementia patient and because they no longer can get toileted or changed regularly they are going to get infections. I'm pissed off because my mom needs assistance to get to the toilet and if she can't get a worker to help her she will go on her own and she might fall and break a hip or get a concussion, or something. I'm pissed off because our seniors might choke on a boiled egg. I'm pissed off because sometimes all a dementia patient needs is someone to hold their hand and no one has the time to hold their hand anymore. I'm pissed off because my mom has dementia. I'm pissed off because my dad is a senior. I'm pissed off because I too will be a senior someday. I'm really pissed off because right now, in some ER in the city, some bimbo is getting top notch medical care because she has a little infection from a botched manicure and my mom is anxiously awaiting for a worker to help her get dressed and into bed because she's tired. I'm pissed off because my mom has paid more taxes in her life time then the bimbo with a bad hang nail at the Foothills emergency room right now. Yep, I'm just pissed off.
That's why we organized the rally against cutbacks. I hope that you reading this will do the same where ever you live. The pay for performance funding system is prevalent in the US, the UK and Europe. More and more countries are moving towards this model of health care funding. That means more and more seniors will not get the quality of care that they not only deserve but that they earned. We have to do something and if we don't then we are stupider than the politicians. I'm not stupid, my mother didn't raise a fool.
Sunday 21 April 2013
The Dementia Diary: Care givers care for each other
The Dementia Diary: Care givers care for each other: My dad and I aren't the only caregivers that go daily or many times a week for our loved one. There are two wives of residents on mom&#...
Care givers care for each other
My dad and I aren't the only caregivers that go daily or many times a week for our loved one. There are two wives of residents on mom's wing that are there everyday. There are two sisters that come several times a week to care for not one parent but both parents. There are sons, daughters and siblings that try to get to the home as often as they can. I have the pleasure of getting to know these people and other caregivers through a support group that I belong too. The similarities between us are many. Of course our loved ones all have dementia. We compare histories, we compare symptoms, we share ideas and solutions to the similar problems that arise in our loved ones. Mostly, we share emotions and feelings and that is where I find the most similarities.
Often we will chat and reminisce about our loved one before the dementia. We talk about what they were and they accomplished. We share funny stories, family histories and even open the doors for a skeleton or two in the closet to come out. I love these conversations because we laugh and smile and for a few moments we are able to forget the present situation and we're feeling happy. It also allows me to get to know the resident, albeit vicariously. It gives me a sense of who they were and overtime they begin to feel like good friends that I have known a life time. It gives us a sense of community and fellowship and security because they know when they aren't there I'm looking out for their loved one as well as mom and I know when I'm not there that they are looking out for their loved one and my mom too.
There are moments in our lives when the frustration we feel will bring us to tears. This we share too. In Lewy-body dementia the levels of cognisance fluctuate often, even throughout the day. In the early afternoon mom can be there and understanding the situation but by the late afternoon she is paranoid and not understanding and thinking that dad and I have done something terrible. The frustration comes when I try to reason with mom, still hoping she will understand. I am learning not to bother trying to reason with a dementia patient and instead I sit silently listening to the accusations and all the while my insides are churning and I bite my lips. One resident won't eat anything that his care giver makes for him anymore thinking it has been poisoned and it's the poison that makes him forget. Other caregivers are frustrated because it only weeks ago that their loved one could still walk with a walker and now is using a wheelchair almost all of the time or they won't eat now but weeks ago were eating normally. While others are frustrated with themselves because they wish they could do more for their loved one and others but their personal lives and other responsibilities simply don't allow for it.
Guilty feelings are also shared. Many of us had an inkling that our loved one may be suffering from dementia but we all shoved those thoughts away instead of listening to what we knew. Some years ago I found an article on dementia symptoms and I sent to my father, my aunt and my brother David. My father read it and concluded that the doctors would know if it was dementia, putting all his faith in a medical system where 90% of the doctors know nothing about dementia. My aunt read it and commented that it was interesting reading and very possible. My brother David said he read it but I don't think he did. I just left it at that because nobody ever listens to me anyways, they hear me, but they don't listen. Other care givers had similar experiences. They tried to talk to other family members and discuss the possibility that it might be dementia but they too were shot down. We all wish we had pursued our hunches and pushed for more evaluations and testing. It's not that it would have changed the outcomes but perhaps it would have changed the present situations that we are all in.
There are many reasons why we feel guilt. One of care givers honestly wishes her loved one would pass away. It's guilt that they feel for saying it out loud and wishing and praying for it. Yet, I understand those wishes so well. Many times I prayed for God or the universe or who or whatever to either end mom's suffering or make her better. Of course the latter happened but my prayers weren't on behalf of my mother, they were for me. It's so hard and painful to see a person you love suffer in any way. There were days when my own pain was so overwhelming that I felt I couldn't bear it any longer and I would fall to my knees and pray for God to take mom to end her suffering but also to end mine. Unless you experience your loved one, unable to really talk or think or walk or enjoy life or living you don't know the feelings of helplessness a caregiver experiences. If they had a headache you could get them an aspirin. If they were hungry you could get them food. If they were thirsty, you could help them with a glass of water. But when a loved one, just sits there staring at a window or a wall, unable to say what they need and the care giver is unable to really help them, well your heart is constantly breaking and you feel absolutely useless and truly helpless.
Anger is another very common feeling we share. We are angry at the system that makes cut backs to extended health care and workers that are needed are getting laid off and us care givers are given no choice but to pick up the slack and fill that void. We get angry at our loved one that we are caring for because we always remember who they were and that they did have the capacity to reason, feel emotion, talk, walk, eat and go to the bathroom and often I feel like screaming out "Jesus Christ Mother, you know how to do this !!" but I don't. Then I get angry at myself for feeling angry at my mom.
Anger often turns to resent. Sometimes I feel resent towards mom and my dad. I resent her for having dementia, I resent dementia, I resent dad for really no reason, I resent my brothers for not being here. In fact I spent an entire month burning up with resent towards my brother when he went for a holiday to Australia. I resent them more when mom gets in a mood and blames dad and I for the situation and says that Doug and David will come and take care her. Again I just want to scream at her "Where are your fucking precious boys now mother!!" but I don't. I see some of this resent in all of us care givers. Wives and husbands are resentful towards the children they raised with their spouse and who don't or can't help out. Siblings that care give for a parent are resentful to their brothers and sisters who don't. We are all slightly resentful towards those who don't understand why we do what we do or those close to us who stay in denial and believe that a diagnosis was wrong simply because they see the loved on a good day as opposed to a bad day. Dementia creates resent in many forms for many people.
Sadly and often this hurly-whirly gamut of emotions causes care givers to break. We are constantly advised to be sure to take time for ourselves and to do some self-care. I laugh at that. Every time I go away for a couple of days, I am overcome with worry and I phone and check up on mom. Do I really enjoy my self-care, no, I feel guilt, worry and fear. My self-care now comes in form of a pill called Prozac as it does for many care givers.
So we care givers stick together. We hug each other often and tightly. We trade off the shoulder to cry on. We talk to each other. We laugh together, we share together and we mourn together. I have met some incredible and wonderful people during this time and I am so very glad they were put on my path because each and every one of them has helped me in some way. I care for each and every one of them because that is another role that care givers have. Care givers must care for each other too.
Often we will chat and reminisce about our loved one before the dementia. We talk about what they were and they accomplished. We share funny stories, family histories and even open the doors for a skeleton or two in the closet to come out. I love these conversations because we laugh and smile and for a few moments we are able to forget the present situation and we're feeling happy. It also allows me to get to know the resident, albeit vicariously. It gives me a sense of who they were and overtime they begin to feel like good friends that I have known a life time. It gives us a sense of community and fellowship and security because they know when they aren't there I'm looking out for their loved one as well as mom and I know when I'm not there that they are looking out for their loved one and my mom too.
There are moments in our lives when the frustration we feel will bring us to tears. This we share too. In Lewy-body dementia the levels of cognisance fluctuate often, even throughout the day. In the early afternoon mom can be there and understanding the situation but by the late afternoon she is paranoid and not understanding and thinking that dad and I have done something terrible. The frustration comes when I try to reason with mom, still hoping she will understand. I am learning not to bother trying to reason with a dementia patient and instead I sit silently listening to the accusations and all the while my insides are churning and I bite my lips. One resident won't eat anything that his care giver makes for him anymore thinking it has been poisoned and it's the poison that makes him forget. Other caregivers are frustrated because it only weeks ago that their loved one could still walk with a walker and now is using a wheelchair almost all of the time or they won't eat now but weeks ago were eating normally. While others are frustrated with themselves because they wish they could do more for their loved one and others but their personal lives and other responsibilities simply don't allow for it.
Guilty feelings are also shared. Many of us had an inkling that our loved one may be suffering from dementia but we all shoved those thoughts away instead of listening to what we knew. Some years ago I found an article on dementia symptoms and I sent to my father, my aunt and my brother David. My father read it and concluded that the doctors would know if it was dementia, putting all his faith in a medical system where 90% of the doctors know nothing about dementia. My aunt read it and commented that it was interesting reading and very possible. My brother David said he read it but I don't think he did. I just left it at that because nobody ever listens to me anyways, they hear me, but they don't listen. Other care givers had similar experiences. They tried to talk to other family members and discuss the possibility that it might be dementia but they too were shot down. We all wish we had pursued our hunches and pushed for more evaluations and testing. It's not that it would have changed the outcomes but perhaps it would have changed the present situations that we are all in.
There are many reasons why we feel guilt. One of care givers honestly wishes her loved one would pass away. It's guilt that they feel for saying it out loud and wishing and praying for it. Yet, I understand those wishes so well. Many times I prayed for God or the universe or who or whatever to either end mom's suffering or make her better. Of course the latter happened but my prayers weren't on behalf of my mother, they were for me. It's so hard and painful to see a person you love suffer in any way. There were days when my own pain was so overwhelming that I felt I couldn't bear it any longer and I would fall to my knees and pray for God to take mom to end her suffering but also to end mine. Unless you experience your loved one, unable to really talk or think or walk or enjoy life or living you don't know the feelings of helplessness a caregiver experiences. If they had a headache you could get them an aspirin. If they were hungry you could get them food. If they were thirsty, you could help them with a glass of water. But when a loved one, just sits there staring at a window or a wall, unable to say what they need and the care giver is unable to really help them, well your heart is constantly breaking and you feel absolutely useless and truly helpless.
Anger is another very common feeling we share. We are angry at the system that makes cut backs to extended health care and workers that are needed are getting laid off and us care givers are given no choice but to pick up the slack and fill that void. We get angry at our loved one that we are caring for because we always remember who they were and that they did have the capacity to reason, feel emotion, talk, walk, eat and go to the bathroom and often I feel like screaming out "Jesus Christ Mother, you know how to do this !!" but I don't. Then I get angry at myself for feeling angry at my mom.
Anger often turns to resent. Sometimes I feel resent towards mom and my dad. I resent her for having dementia, I resent dementia, I resent dad for really no reason, I resent my brothers for not being here. In fact I spent an entire month burning up with resent towards my brother when he went for a holiday to Australia. I resent them more when mom gets in a mood and blames dad and I for the situation and says that Doug and David will come and take care her. Again I just want to scream at her "Where are your fucking precious boys now mother!!" but I don't. I see some of this resent in all of us care givers. Wives and husbands are resentful towards the children they raised with their spouse and who don't or can't help out. Siblings that care give for a parent are resentful to their brothers and sisters who don't. We are all slightly resentful towards those who don't understand why we do what we do or those close to us who stay in denial and believe that a diagnosis was wrong simply because they see the loved on a good day as opposed to a bad day. Dementia creates resent in many forms for many people.
Sadly and often this hurly-whirly gamut of emotions causes care givers to break. We are constantly advised to be sure to take time for ourselves and to do some self-care. I laugh at that. Every time I go away for a couple of days, I am overcome with worry and I phone and check up on mom. Do I really enjoy my self-care, no, I feel guilt, worry and fear. My self-care now comes in form of a pill called Prozac as it does for many care givers.
So we care givers stick together. We hug each other often and tightly. We trade off the shoulder to cry on. We talk to each other. We laugh together, we share together and we mourn together. I have met some incredible and wonderful people during this time and I am so very glad they were put on my path because each and every one of them has helped me in some way. I care for each and every one of them because that is another role that care givers have. Care givers must care for each other too.
Friday 12 April 2013
The Dementia Diary: When the end is near
The Dementia Diary: When the end is near: All of us have a life cycle and we all know that it ends with death. In an extended care facility death is always present. It is something...
When the end is near
All of us have a life cycle and we all know that it ends with death. In an extended care facility death is always present. It is something I have become accustomed to. Since my arrival, in late summer of 2012, eight residents on mom's wing have passed away. The first resident I didn't know very well but I still found it shocking. But today, I'm no longer shocked rather I see it as a blessing because I know, the suffering is over for everyone. The resident is no longer in pain and the friends and family can finally find peace and relief.
Over the past months I have observed things and I see similarities. When a resident is taken from the facility it means that they are very sick and their personal directives indicate that extraordinary measures to maintain life are to be taken. So their room sits empty. There is no point in asking any of the workers how they are doing because they either don't know and if they do, they are not allowed to divulge such information without family consent. So, workers, volunteers and residents watch and wait. We watch the room and we wait for the name to come off the door and NEW resident move in. Then we wait for an obituary on the memorial wall. It's sad really as many of the healthier residents knew them for quite some time and even before the dementia got a hold of them, yet they aren't given the chance to say goodbye before they pass. I find it sad too because I see them everyday and I develop a bond with all of them at some level. I know their names and I most times I get to know the family or the caregiver and I am fortunate to get to know about the person they were.
There was a resident when I first arrived. She was old and she was sick. She never spoke much and if she did, often it made no sense. Yet when I would bring her a juice, she would always say thank-you. One day I set another resident at her table. She motioned for me to come close and I did.
"Get that f*****g bitch away from my table." she said. I was shocked by what she said and also by the fact that she said it so clearly and concisely.
This resident loved small stuffed animals and when I found some of my daughters old 'Beanie Babies' I picked one out, a squirrel, and I gave it to her. She loved it and for many months the squirrel was by her side. When I saw the paramedics take her from her room, I was happy to see that the squirrel was with her on the gurney as they took her away. That was the last time I saw her and I was saddened by the news of her death only days later. Yet, at the same the time, relieved.
In other situations the residents will have a personal directive that indicates they want palliative care only, which is provided at the facility so the resident is in a quieter, less intrusive environment than a hospital. Family members and friends will come together. A cart of food and beverages will be outside the room and staff will keep it stocked with anything the family needs. Pastoral workers will come and go. Sometimes for days, tired family members will take shifts, never leaving the side of their loved one. Until one day the cart is gone and then we know that the person has passed away. Family will gather their belongings and in what seems an instance, any memory of them is gone. Again, it is saddening but at the same time very heart-warming knowing they did not die alone and that they were deeply loved.
Finally, dead comes very unexpected at times. On one occasion as I was helping my mother with her lunch, I watched the undertaker come and go towards mom's wing. I quickly looked around to see who wasn't there. Two of the 26 residents weren't at lunch that day and I could not resist the need to go and see. I caught up to the undertaker and he went towards the nurses station. I stopped at the open doorway of one of the residents who wasn't at lunch and I saw her, peacefully forever asleep on her bed. Just the night before her and I were joking how jiggling the Jell-o was as it literally bounced out of the bowl. We both laughed and now there she was, in front me, gone.
Today when I went in I saw the daughter of a resident in the hall. Her father had been ill but seemed to be on the mend. I asked her how her dad was today and to my surprise she told me he passed away in his sleep, last night. Again, I was shocked as only two days ago I patted his shoulder and he said, "Hello my raven haired beauty" because he could never remember my name.
There was an eerie quiet on the ward, just like when the other resident had passed away in her sleep. I don't know if the calm is death lingering in the air or if it is the peaceful spirit of the person that has passed. It is a pleasant serenity that I can't seem to describe as it is almost surreal. But I do know that when a resident passes in their sleep they leave a presence and I don't fear death anymore. I hope that when the end in near for mom that she simply goes to sleep. I don't welcome the day but I know the day will come.
Over the past months I have observed things and I see similarities. When a resident is taken from the facility it means that they are very sick and their personal directives indicate that extraordinary measures to maintain life are to be taken. So their room sits empty. There is no point in asking any of the workers how they are doing because they either don't know and if they do, they are not allowed to divulge such information without family consent. So, workers, volunteers and residents watch and wait. We watch the room and we wait for the name to come off the door and NEW resident move in. Then we wait for an obituary on the memorial wall. It's sad really as many of the healthier residents knew them for quite some time and even before the dementia got a hold of them, yet they aren't given the chance to say goodbye before they pass. I find it sad too because I see them everyday and I develop a bond with all of them at some level. I know their names and I most times I get to know the family or the caregiver and I am fortunate to get to know about the person they were.
There was a resident when I first arrived. She was old and she was sick. She never spoke much and if she did, often it made no sense. Yet when I would bring her a juice, she would always say thank-you. One day I set another resident at her table. She motioned for me to come close and I did.
"Get that f*****g bitch away from my table." she said. I was shocked by what she said and also by the fact that she said it so clearly and concisely.
This resident loved small stuffed animals and when I found some of my daughters old 'Beanie Babies' I picked one out, a squirrel, and I gave it to her. She loved it and for many months the squirrel was by her side. When I saw the paramedics take her from her room, I was happy to see that the squirrel was with her on the gurney as they took her away. That was the last time I saw her and I was saddened by the news of her death only days later. Yet, at the same the time, relieved.
In other situations the residents will have a personal directive that indicates they want palliative care only, which is provided at the facility so the resident is in a quieter, less intrusive environment than a hospital. Family members and friends will come together. A cart of food and beverages will be outside the room and staff will keep it stocked with anything the family needs. Pastoral workers will come and go. Sometimes for days, tired family members will take shifts, never leaving the side of their loved one. Until one day the cart is gone and then we know that the person has passed away. Family will gather their belongings and in what seems an instance, any memory of them is gone. Again, it is saddening but at the same time very heart-warming knowing they did not die alone and that they were deeply loved.
Finally, dead comes very unexpected at times. On one occasion as I was helping my mother with her lunch, I watched the undertaker come and go towards mom's wing. I quickly looked around to see who wasn't there. Two of the 26 residents weren't at lunch that day and I could not resist the need to go and see. I caught up to the undertaker and he went towards the nurses station. I stopped at the open doorway of one of the residents who wasn't at lunch and I saw her, peacefully forever asleep on her bed. Just the night before her and I were joking how jiggling the Jell-o was as it literally bounced out of the bowl. We both laughed and now there she was, in front me, gone.
Today when I went in I saw the daughter of a resident in the hall. Her father had been ill but seemed to be on the mend. I asked her how her dad was today and to my surprise she told me he passed away in his sleep, last night. Again, I was shocked as only two days ago I patted his shoulder and he said, "Hello my raven haired beauty" because he could never remember my name.
There was an eerie quiet on the ward, just like when the other resident had passed away in her sleep. I don't know if the calm is death lingering in the air or if it is the peaceful spirit of the person that has passed. It is a pleasant serenity that I can't seem to describe as it is almost surreal. But I do know that when a resident passes in their sleep they leave a presence and I don't fear death anymore. I hope that when the end in near for mom that she simply goes to sleep. I don't welcome the day but I know the day will come.
Sunday 7 April 2013
The Dementia Diary: The king is dead.
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