Saturday 27 July 2013
The Dementia Diary: The Dementia Diary: I don't wanna grow up
The Dementia Diary: The Dementia Diary: I don't wanna grow up: The Dementia Diary: I don't wanna grow up : I recently read a story about the world's oldest man. He is 116 years old and he is the...
What's in a word
I'm sure many have noticed that for nearly two months I have not posted on the blog. The reason is simple. My mom asked me not to. Mom has never read the blog and until it was brought to her attention, knew nothing of the blog. She has been led to believe that it contains nasty lies about her and of course, any one who has read it, knows that is far from the truth. So, I will focus the blog less on mom and more on dementia and everything associated with it.
I think one of the reasons mom hates the blog is because it uses the word dementia and she has grown to hate that word. Dementia is a Latin word from de- "without" + ment, the root of mens "mind and it means madness. Close your eyes and say the word out loud. What image comes to mind. I'm sure it is similar to what comes to my mind. I see a dishevelled person in a straight jacket banging their head against the wall of a padded room. That image creates a stigma and a big misunderstanding of what dementia in our modern world actually means. The word is off set when combined with others and sounds more medical. Close your eyes again and say Frontal Lobe dementia or Lewy Body dementia and what image comes to mind. If you are like me, than your mind stays blank because we haven't been conditioned to associate anything with those terms. That is what needs to change. People need to understand what dementia actually is. I hope to do that.
More than half the world still believes that dementia is a normal part of ageing. It isn't, far from it. I know many people in their eighties and even nineties who are as quick and on the ball cognitively as I am, even more so. They move a little slower and might even use a walker. Their bones are weaker. They might be a little incontinent and use Depends. They might have some age on-set diabetes or a bit of a problem with high blood pressure and need some medication. They might forget a person's birthday occasionally or misplace the TV remote, but don't we all, at any age. They still enjoy playing bridge or crib. They read, watch TV, gossip over coffee and complain about the state of affairs in the world. They still engage in normal everyday life. Normal ageing causes atrophy of the brain. However, overall cognitive functioning can remain unaffected as people age. The brain may become less efficient, but still be able to do the job. This is normal ageing and there in no dementia involved, their minds are essentially intact.
Dementia isn't a disease. It's a syndrome meaning that is has a set of signs and symptoms. The symptoms involve the cognitive functions of memory, attention, language and problem solving. Dementia is characterized by a progressive impairment of memory and intellectual function that is severe enough to interfere with social and work skills. Memory, orientation, abstraction, ability to learn, visual-spatial perception, and higher executive functions such as planning, organizing and sequencing may also be impaired. Dementia can be rapid progressing or slow in it's progression. Regardless, plaque building up on portions of the brain and atrophy of the neurons and white matter of the brain eventually causes physical symptoms as organs of the body lose the ability to function properly.
There are over 200 types and sub-types of dementia. Some types are completely genetic like Huntington's disease. Frontal lobe dementia and Alzheimer's can be inherited and it was just recently that the mutated gene for these types was finally identified. There are 11 inherited diseases that will cause dementia. Diseases like Krabbe disease and Urea cycle diseases. There are types of dementia like Wernicke's syndrome and Dementia pugilistic and when the causes of the dementia, in these cases alcohol and repeated brain trauma stop, the progression of the disease stops too. There are 'organic' types of dementia where secondary diseases cause the dementia. Diseases like syphilis, hypertension and vascular diseases will cause dementia if not properly treated. There are chemically induced types of dementia in which damage to the brain is caused by exposure to certain types of prescribed medications including anti-convulsive drugs and chemotherapy drugs. Methamphetamine use and even a one time exposure to anaesthetics can induce dementia also. In these cases some of the symptoms can and sometimes be reversible but the initial damage to the brain tissue and white matter are not and often over time, dementia may develop.
Geriatric medicine is still new in the world of medicine and only a handful of universities and medical schools in North America offer this type of specialization. Sadly, dementia was first seen in 1907 but not studied again until 1976. It's a shame that all those years that could have been spent on research and development were wasted. Regardless, I have faith that things will improve for everyone. For improvements to be seen we have to educate ourselves and become aware of this absolutely insidious illness and most importantly we need to prepare ourselves and our families.
The University of Calgary is one of the medical schools that does offer a geriatric medicine specialization program. Recently the department held an on-line seminar on dementia. Dr. Holroyd-Leduc was the facilitator. Like my mom, she can't stand the word dementia. She mentioned that prefers to use terms like 'Cognitive Disorder Not Otherwise Specified' and 'White Matter Hypodensity'. She also noted the simple fact that people don't understand those terms but they do understand the word dementia. I'm like mom too, I'm starting to hate the word just as much as she does.
I think one of the reasons mom hates the blog is because it uses the word dementia and she has grown to hate that word. Dementia is a Latin word from de- "without" + ment, the root of mens "mind and it means madness. Close your eyes and say the word out loud. What image comes to mind. I'm sure it is similar to what comes to my mind. I see a dishevelled person in a straight jacket banging their head against the wall of a padded room. That image creates a stigma and a big misunderstanding of what dementia in our modern world actually means. The word is off set when combined with others and sounds more medical. Close your eyes again and say Frontal Lobe dementia or Lewy Body dementia and what image comes to mind. If you are like me, than your mind stays blank because we haven't been conditioned to associate anything with those terms. That is what needs to change. People need to understand what dementia actually is. I hope to do that.
More than half the world still believes that dementia is a normal part of ageing. It isn't, far from it. I know many people in their eighties and even nineties who are as quick and on the ball cognitively as I am, even more so. They move a little slower and might even use a walker. Their bones are weaker. They might be a little incontinent and use Depends. They might have some age on-set diabetes or a bit of a problem with high blood pressure and need some medication. They might forget a person's birthday occasionally or misplace the TV remote, but don't we all, at any age. They still enjoy playing bridge or crib. They read, watch TV, gossip over coffee and complain about the state of affairs in the world. They still engage in normal everyday life. Normal ageing causes atrophy of the brain. However, overall cognitive functioning can remain unaffected as people age. The brain may become less efficient, but still be able to do the job. This is normal ageing and there in no dementia involved, their minds are essentially intact.
Dementia isn't a disease. It's a syndrome meaning that is has a set of signs and symptoms. The symptoms involve the cognitive functions of memory, attention, language and problem solving. Dementia is characterized by a progressive impairment of memory and intellectual function that is severe enough to interfere with social and work skills. Memory, orientation, abstraction, ability to learn, visual-spatial perception, and higher executive functions such as planning, organizing and sequencing may also be impaired. Dementia can be rapid progressing or slow in it's progression. Regardless, plaque building up on portions of the brain and atrophy of the neurons and white matter of the brain eventually causes physical symptoms as organs of the body lose the ability to function properly.
There are over 200 types and sub-types of dementia. Some types are completely genetic like Huntington's disease. Frontal lobe dementia and Alzheimer's can be inherited and it was just recently that the mutated gene for these types was finally identified. There are 11 inherited diseases that will cause dementia. Diseases like Krabbe disease and Urea cycle diseases. There are types of dementia like Wernicke's syndrome and Dementia pugilistic and when the causes of the dementia, in these cases alcohol and repeated brain trauma stop, the progression of the disease stops too. There are 'organic' types of dementia where secondary diseases cause the dementia. Diseases like syphilis, hypertension and vascular diseases will cause dementia if not properly treated. There are chemically induced types of dementia in which damage to the brain is caused by exposure to certain types of prescribed medications including anti-convulsive drugs and chemotherapy drugs. Methamphetamine use and even a one time exposure to anaesthetics can induce dementia also. In these cases some of the symptoms can and sometimes be reversible but the initial damage to the brain tissue and white matter are not and often over time, dementia may develop.
Geriatric medicine is still new in the world of medicine and only a handful of universities and medical schools in North America offer this type of specialization. Sadly, dementia was first seen in 1907 but not studied again until 1976. It's a shame that all those years that could have been spent on research and development were wasted. Regardless, I have faith that things will improve for everyone. For improvements to be seen we have to educate ourselves and become aware of this absolutely insidious illness and most importantly we need to prepare ourselves and our families.
The University of Calgary is one of the medical schools that does offer a geriatric medicine specialization program. Recently the department held an on-line seminar on dementia. Dr. Holroyd-Leduc was the facilitator. Like my mom, she can't stand the word dementia. She mentioned that prefers to use terms like 'Cognitive Disorder Not Otherwise Specified' and 'White Matter Hypodensity'. She also noted the simple fact that people don't understand those terms but they do understand the word dementia. I'm like mom too, I'm starting to hate the word just as much as she does.
Monday 3 June 2013
The Dementia Diary: I don't wanna grow up
The Dementia Diary: I don't wanna grow up: I recently read a story about the world's oldest man. He is 116 years old and he is the last person living in the world that was born i...
I don't wanna grow up
I recently read a story about the world's oldest man. He is 116 years old and he is the last person living in the world that was born in the 19th century. I honestly can't fathom all the changes this man has been witness too. Of course the obvious technological changes are many but this is a man who lived in the tail end of the Japanese feudal system who saw changes from a shogunate to an emperor and than to a western like parliamentary system. This is a man who lived through the many wars that Japan fought and remembers his country as an ally in WW 1 and as the enemy in WW 2. This is a man who worked in Korea when it was a colony of Japan. This is man who retired before I was even born, smoked when it was fashionable, still enjoys rice wine, and took up farming at the age of 90. He attributes his longevity not to healthy living but to eating small, sensible meals of fresh, seasonal foods. Go figure that. The secret to the longevity is eating real food in smaller portions.
When I was a child, I wanted to grow up and it wasn't about being 18 and leaving home. I enjoyed hanging around with the elderly and listening to their stories of the days long past. I loved how my grandfather was respected in my family and how other elderly people were respected in their families too. I can remember sitting on my grandfathers knee and staring at the wrinkles of time and hard work on his face. I would rub my hand across the weathered skin of his face and I would pull on the waddle of his chin. I would laugh when he took out his false teeth and laugh even harder when I pulled his finger so he could fart. He would say "When you're my age you can fart anywhere". I never looked at my grandfather as old or decrepit. I always saw him as an honourable man, who worked hard for his family and who did the best he could with what he had. I respected my grandfather and I still do. He wasn't a centurion when he passed away, in fact he was my mom's age now. Regardless, he had lived to see many changes in the world, his children grow, most of his grand-children grow and even few great-grandchildren come into this world. I was very saddened when he died and I still miss him. But I thought he had lived a long enough life and as his health was started to fail him, perhaps it was time.
In our modern world we live longer. We live longer for many reasons and of course medical advancements is the first and foremost reason. However, are some of these medical advancements really worth it. I can stop colouring my hair now and take a pill that stops grey hair. I can get botox or a face lift or a butt lift or a breast lift at any age I want. I can take a variety of remedies to stave off this disease or that disease and I can take a plethora of medications to prevent the advancement of any age related disease that I may develop. So, I could in fact live to be centurion myself. The question is, do I want too? Mr. Kimura in Japan is the last man in a world of 7 billion people to be born in the 19th century. 1 in 7 billion. That fact alone makes him a rarity and makes me think even further. Is the human body made to live that long? I don't think it is.
Everyday I see the elderly at mom's facility. Everyday I hear some sort of complaint of a sore this or a sore that. Everyday someone will say I wish I could still see or I wish I could still dance or I wish my wife was still here. Everyday I watch those elderly who can no longer talk, or walk. I watch as they stare and then suddenly, for no reason they smile. I wonder if they are remembering a happier time in their life or is it simply their befuddled mind. Sometimes I hear them moan for no reason and I wonder if they are in pain and do they feel pain or is it just an involuntary reaction or the only sound they are able to make. I wonder is this the life they envisioned. I wonder if they had a choice, what choice would they make. I wonder if they are happy or if they are just waiting. I wonder a lot. I wonder about my own old age and I envision how I want it to be. Sadly, chances are, it will be nothing close to what I envision.
More and more our world is changing and even now, in my 40's I complain about some of the changes. The one change that I find most disturbing though is the treatment of our elderly. For centuries the elderly were kings and chiefs. They were respected on honoured. Our world is no longer like that. Elderly are blamed for the misfortunes of today's world and for the historical choices they made. The elderly are criticised for everything from the way they drive to costing the systems millions of dollars. Then they are herded away into facilities so they are unseen and then forgotten about. I doubt that this how they envisioned their golden years because really, what's golden about that?
Mr. Kimura is cared for by the 89 year old widow of his eldest son. He has out lived two wives, two children and even some of his grand-children as well as his siblings and all of his close friends. At 116 he spends most of his days in bed. As he is the oldest living person in the world he has been interviewed many times. I read over twenty different interviews from news agencies around the globe and not one of them, not one has ever asked him this simple question, "Are you happy Mr. Kimura?". Perhaps they don't ask because they know the answer or they fear the answer. I don't know the answer either but I know what my answer would be and as it stands now, I don't wanna grow up.
When I was a child, I wanted to grow up and it wasn't about being 18 and leaving home. I enjoyed hanging around with the elderly and listening to their stories of the days long past. I loved how my grandfather was respected in my family and how other elderly people were respected in their families too. I can remember sitting on my grandfathers knee and staring at the wrinkles of time and hard work on his face. I would rub my hand across the weathered skin of his face and I would pull on the waddle of his chin. I would laugh when he took out his false teeth and laugh even harder when I pulled his finger so he could fart. He would say "When you're my age you can fart anywhere". I never looked at my grandfather as old or decrepit. I always saw him as an honourable man, who worked hard for his family and who did the best he could with what he had. I respected my grandfather and I still do. He wasn't a centurion when he passed away, in fact he was my mom's age now. Regardless, he had lived to see many changes in the world, his children grow, most of his grand-children grow and even few great-grandchildren come into this world. I was very saddened when he died and I still miss him. But I thought he had lived a long enough life and as his health was started to fail him, perhaps it was time.
In our modern world we live longer. We live longer for many reasons and of course medical advancements is the first and foremost reason. However, are some of these medical advancements really worth it. I can stop colouring my hair now and take a pill that stops grey hair. I can get botox or a face lift or a butt lift or a breast lift at any age I want. I can take a variety of remedies to stave off this disease or that disease and I can take a plethora of medications to prevent the advancement of any age related disease that I may develop. So, I could in fact live to be centurion myself. The question is, do I want too? Mr. Kimura in Japan is the last man in a world of 7 billion people to be born in the 19th century. 1 in 7 billion. That fact alone makes him a rarity and makes me think even further. Is the human body made to live that long? I don't think it is.
Everyday I see the elderly at mom's facility. Everyday I hear some sort of complaint of a sore this or a sore that. Everyday someone will say I wish I could still see or I wish I could still dance or I wish my wife was still here. Everyday I watch those elderly who can no longer talk, or walk. I watch as they stare and then suddenly, for no reason they smile. I wonder if they are remembering a happier time in their life or is it simply their befuddled mind. Sometimes I hear them moan for no reason and I wonder if they are in pain and do they feel pain or is it just an involuntary reaction or the only sound they are able to make. I wonder is this the life they envisioned. I wonder if they had a choice, what choice would they make. I wonder if they are happy or if they are just waiting. I wonder a lot. I wonder about my own old age and I envision how I want it to be. Sadly, chances are, it will be nothing close to what I envision.
More and more our world is changing and even now, in my 40's I complain about some of the changes. The one change that I find most disturbing though is the treatment of our elderly. For centuries the elderly were kings and chiefs. They were respected on honoured. Our world is no longer like that. Elderly are blamed for the misfortunes of today's world and for the historical choices they made. The elderly are criticised for everything from the way they drive to costing the systems millions of dollars. Then they are herded away into facilities so they are unseen and then forgotten about. I doubt that this how they envisioned their golden years because really, what's golden about that?
Mr. Kimura is cared for by the 89 year old widow of his eldest son. He has out lived two wives, two children and even some of his grand-children as well as his siblings and all of his close friends. At 116 he spends most of his days in bed. As he is the oldest living person in the world he has been interviewed many times. I read over twenty different interviews from news agencies around the globe and not one of them, not one has ever asked him this simple question, "Are you happy Mr. Kimura?". Perhaps they don't ask because they know the answer or they fear the answer. I don't know the answer either but I know what my answer would be and as it stands now, I don't wanna grow up.
Thursday 23 May 2013
The Dementia Diary: An Onion Sandwich
The Dementia Diary: An Onion Sandwich: I haven't been writing a lot on the blog lately because it has been a very difficult 3 weeks. There have been a couple deaths on my mom...
An Onion Sandwich
I haven't been writing a lot on the blog lately because it has been a very difficult 3 weeks. There have been a couple deaths on my mom's wing that saddened me more than I thought they would. I've struggled with my own mid-life thoughts and mom, well mom has been helped along to a 'I hate Lisa mode'. Although it isn't unfamiliar territory for me, it hurts and it's depressing to read about so I won't go into detail. It's not what she says that hurts because they are things I have heard before at many times through out my life. They are nasty, hurtful words that in the past could be attributed to mental illness but now not so much. Mom still has some sort of dementia, nobody can really pin point what and mom still has mental illness and what label she is now can't really be defined either. What is for sure is that she isn't firing on all cylinders and it is obvious to everyone. What is for sure is that she isn't at a normal functioning level of thought and that too is obvious to everyone. What is also for sure that her thoughts are being manipulated by a close family member and that is what I find most hurtful and disturbing.
We go through life really believing that we know our family members, that we really know them and trust them. That is until a family crisis hits and often the true colours of the person are revealed. That is the present situation. Two months ago dad and I started bringing mom home on the weekends. Not all the visits were good because mom can't remember things that have always been in the house and insisted they were another woman's. They she couldn't remember that she once weighed almost 200 lbs and the clothes in the closet weren't another 'fat' woman's rather they were hers. To alleviate the possibility of mom getting agitated dad and I would often give the phone and her address book to her. Mom really can't use the phone that well and most calls would not get through but the occasional call would connect and mom would talk away about whatever was in her mind at the time. Regardless, it would occupy a good hour of mom's time and often tire her out to the point of needed an afternoon nap. I guess the phone was a pacifier for mom as it allowed her to feel some connection with the outside world. Some of the conversations were innocuous and I had no concern. But, some required damage control like when she called the husband of her deceased friend and demanded to speak with her or when she laughed at another friend after he told that his wife (who mom really didn't like) has terminal cancer. Many times mom would hit the speaker phone button and from the basement I could monitor the conversations and intervene to do any damage control when needed. It was during these speaker phone calls that I heard my mom's conversations with the family member I speak of.
The first hint of dissidence was in January of this year and it wasn't in a phone call rather it was in person and this family member said things, with lawyers present that were disturbing and confusing. At the time mom was was getting better and had been taken out of the Broda chair and into a regular wheelchair. I thought this family member would pleased with mom's progression but they seemed not notice, let alone care. This person then told lawyers that my mom put herself into the extended care facility that she is in to get away from the abuse of my father. Of course no one present took it seriously because all of us present knew that people don't admit themselves to an extended care home. We all know that any senior or person with disability must be assessed and then they are put on a waiting list and when a bed becomes available then they are placed in a facility. Depending on the level of need is how people are placed in Alberta and because, at the time, mom's need was great, she was placed in an available facility almost immediately. This person knows that mom was in two other extended care facilities before a bed became available where she presently resides. The statement confused everyone and one of the lawyers actually asked me if there were skeletons in the closet. I was confused and began to think that maybe I didn't notice things or I had blocked things out or that perhaps things had happened before I was born. I was shocked and couldn't believe that this person would say such things and to alleviate my own confusion I spoke with other family members. They all reassured me that my father was never abusive to my mother and that I'm not blocking anything out of my memory. We all agreed that this family member has their own mental health issues that aren't being addressed and this is how they perceive things from the past and things now present. So, I just left it at that as no one was taking the statement seriously and we all knew it to be untrue.
Months later when I first overheard a conversation between this person and my mom I still wasn't that concerned. This person has issues not only with the family but with me in particular and the statements they made about me to my mom were hurtful, untrue and uncalled for. I was angered not by what was said about me but that this person, knowing that mom is often confused, would say things to add more confusion to her mind. I thought it very irresponsible and inconsiderate of this person to do so because that is exactly what happened. Mom became more confused and began to question the reasoning as to why I, of all people, returned home to help care for her. I explained to her that at the time we all felt that she would not survive to Christmas and I came home to be with her during that time and to be there for my father. Nothing more became of it and after a nap, mom was fine.
I overheard other conversations between my mom and this person and each one became more and more disturbing. There is a very fine line between being positive and encouraging with mom and encouraging the delusions. When mom gets angry at the walker and says how she hates it dad or I or the workers tell her that the walker is for her safety until she gets her balance back and that there is no shame in using a walker as almost all the people around her use them. We remind her that only a few months ago she couldn't walk at all and we try to encourage her to be grateful. Those are words of reassurance and encouragement and they are positive and they alleviate her anxiety. Mom is nothing short of a small miracle and it is possible that someday she will not need the walker but the reality is that she for now, she needs it and chances are that she will need it for the rest of her life. However this person made statements that if mom could walk without the walker she could move out of the care facility she is in and live on her own. What has happened is mom at times thinks that she should walk more without the walker and then she can leave the extended facility. The fact is that mom does not have good balance without the walker. She can walk without from a chair to a nearby table to keep her balance but no further. She has argued with the caregivers at the facility insisting that she does not need the walker. These beliefs put mom at risk. Mom could easily fall and break a hip or hit or head or anything. But the person who made these statements, the statements that enhance her delusions gave no consideration to the risk that it creates for mom or the facility or for the worry it creates for the rest of family, especially my dad. That I find very disturbing.
For a couple months now mom has worried about money and the power of attorney and how to pay for the facility. She worries that her grand-children's educational funds will be spent up paying for the facility. She worries that dad will sell the house and keep all the money. She is angry that she no longer has credit cards. Others in the facility worry and complain about the exact same things and many families and caregivers deal with these issues regularly. We tell mom that her pensions cover the expenses of the facility and they do. We remind her that she doesn't need money as everything she needs is at the facility and when she needs anything, and I mean anything from ice cream to support hose, dad runs out and gets it for it. When she wants to go shopping, dad takes her. Still the worries of money sit in her mind and some days that is all she can think about and it agitates her. In some of the conversations that mom had with this family member, they too mentioned the power of attorney and how it was there opinion that mom was capable to handle her finances and that they would help her with that but first she had to get the power of attorney revoked. On two occasions after conversations with this family member mom became so agitated that dad and I had to end the home visit and return her to the facility where the workers could calm her down and medicate her if necessary. One of these occasions I got so angry that I called other family members and asked them to speak with this other family member because perhaps they don't realize how it agitates mom and how their words effect her well being. I didn't think it was intentional, I thought they just aren't aware of how to communicate with a person who has an addled mind and how you have to choose your words wisely. I left to the rest of family to deal with and I hoped that this family member would understand and start talking about the weather instead, they didn't.
The other reoccurring delusion that mom has is that there is another woman living with dad during the week who leaves on the weekend. In the past she had a name, Mary but that morphed to a fat woman wearing size 18 clothes who was using the closet and then mom deciding that she was leaving dad as soon as she could. Most people at the facility simply laughed at the delusions, not in front of mom, but rather with me when I came to help out or to visit. Although very hurtful to hear and hurtful to see how it hurts my dad, we have to laugh at them because it's funny to imagine my father with another woman or someone like my dad carrying on with another woman. For myself, my dad, my daughter and the workers there really was no way to put a positive spin on her delusions so we would attempt to refute them with common sense. That doesn't work either as you can't reason with a person who's mind isn't working properly. More often than not we would all choose just to listen as she would natter on and after a few minutes, because her mind isn't all there, mom would think about something else and the conversation would change. In another conversation that I overhead between my mother and the family member it became very evident that the family member I write about has little concern for the well being of my mother. Rather than refute the delusions that mom spoke off, like other members of the family and friends who she had spoken with on the matter and on that day, this person said that they hire a moving van and in July come and collect mom, her things and help her to resettle in another city, in another province and that all my mom had to do was get the power of attorney back. I couldn't believe what I was hearing and the level of agitation that it created in mom was off the scale. I cried out of anger and I cried out of the realization that this family member is not in denial about mom's mental capability, they are not unaware of how to communicate with mom, they are not trying to help mom, rather they are trying to use mom's weak mind to manipulate the situation. If mom were actually to move and leave dad, live on her own and take care of her money (all of which she can't physically, mentally or competently do) then this person would have access to what money and investments mom has and with the state of mind that mom is in, they could easily manipulative mom for their own financial and personal gain. I can't even comprehend such behaviour by anyone let alone a member of our family and by definition it's a form of elder abuse. I was sickened by the obvious and struggled to find answers as to why this person, this family person would behave in such a way. Is this person so greedy that they will say and do things with the intention of gaining access to mom's finances? Do they hate me and dad so much that they say and do things that will upset mom and in turn make things difficult for dad and myself? Are they delusional or mentally ill themselves and really aren't aware of what they are doing? I simply do not know the reasoning and I never really will but what I do know it that their actions and behaviors are harmful to my mother and her well being but I can't stop it and I feel helpless.
I brought my concerns to other family members. Really nothing can be done and no one wanted to pursue it further because the rest of the family is well aware of mom's limitations, so nothing was said or done. I was left with a very saddened and broken heart and not because I felt no one was listening but because this was another family member who I had trusted and who I had once loved. It breaks my heart to see the confusion this person's statements had for mom and how it bothered her to the point of where my mom is once again a victim of the terrors that are in her own mind. For a few months mom was normal and our relationship was normal and enjoyable. If I left the room she would ask, where's Lisa-Maire and would ask the workers when my dad and I were coming and we would have normal conversations do things together. Life was good, well as good as it gets and this family member has awakened the demons that had been sleeping in mom and they have done that intentionally. When the family member decided to come for what is now an extended visit I simply had to put everything in God's hands, and as difficult as that is for me to do, that's what I've done. So for over a week now mom won't speak to me because this family member told her not too. That hurts, that hurts a lot. Other caregivers and workers on the wing that mom lives on have also over heard what this person says to mom and how they communicate with her and they have concerns too as they see how it agitates and creates anxiety for mom. The other caregivers and workers have noticed how it is affecting my father and his anguish is showing in his health. The other caregivers and workers have noticed how it hurts me because my smile isn't as big as it was. But I tell them not to worry because this person will eventually leave and mom will have a different delusion and that the dust will settle. I said this just yesterday though inside, my heart was throbbing because it is painful.
As I was speaking with another caregiver and explaining to her not to worry one of the residents called me.
"Lisa-Marie," she said. "I can hear you, come over here." This resident is very blind and knows me by the sound of my voice. So I went over to her to see what she wanted.
"Did you make Joan an onion sandwich,' she asked abruptly.
I answered that I had and I was confused by the question and thinking that maybe the smell of sandwich or smell of Joan's breath was disturbing to this resident. Instead she asked how I made the sandwich and I told her with whole wheat bread, butter, mayo, salt, pepper and white vidalia onions.
She smiled at me and said "White onions, right".
"Yes," I responded.
"Perfect," she said. "Can you make me one for supper tomorrow only I like lots of mayo on mine." I smiled and said I would and gave her a hug.
In that moment all the the worry, the fear, the anger and the hurt was gone. It was gone because I realized that people know what is in our souls and that the residents, the staff, the rest of my family and even my mother know that my soul is good. So does God and God really knows what is in our souls so now I fear for this family member because I'm pretty sure that they are digging themselves to hell.
We go through life really believing that we know our family members, that we really know them and trust them. That is until a family crisis hits and often the true colours of the person are revealed. That is the present situation. Two months ago dad and I started bringing mom home on the weekends. Not all the visits were good because mom can't remember things that have always been in the house and insisted they were another woman's. They she couldn't remember that she once weighed almost 200 lbs and the clothes in the closet weren't another 'fat' woman's rather they were hers. To alleviate the possibility of mom getting agitated dad and I would often give the phone and her address book to her. Mom really can't use the phone that well and most calls would not get through but the occasional call would connect and mom would talk away about whatever was in her mind at the time. Regardless, it would occupy a good hour of mom's time and often tire her out to the point of needed an afternoon nap. I guess the phone was a pacifier for mom as it allowed her to feel some connection with the outside world. Some of the conversations were innocuous and I had no concern. But, some required damage control like when she called the husband of her deceased friend and demanded to speak with her or when she laughed at another friend after he told that his wife (who mom really didn't like) has terminal cancer. Many times mom would hit the speaker phone button and from the basement I could monitor the conversations and intervene to do any damage control when needed. It was during these speaker phone calls that I heard my mom's conversations with the family member I speak of.
The first hint of dissidence was in January of this year and it wasn't in a phone call rather it was in person and this family member said things, with lawyers present that were disturbing and confusing. At the time mom was was getting better and had been taken out of the Broda chair and into a regular wheelchair. I thought this family member would pleased with mom's progression but they seemed not notice, let alone care. This person then told lawyers that my mom put herself into the extended care facility that she is in to get away from the abuse of my father. Of course no one present took it seriously because all of us present knew that people don't admit themselves to an extended care home. We all know that any senior or person with disability must be assessed and then they are put on a waiting list and when a bed becomes available then they are placed in a facility. Depending on the level of need is how people are placed in Alberta and because, at the time, mom's need was great, she was placed in an available facility almost immediately. This person knows that mom was in two other extended care facilities before a bed became available where she presently resides. The statement confused everyone and one of the lawyers actually asked me if there were skeletons in the closet. I was confused and began to think that maybe I didn't notice things or I had blocked things out or that perhaps things had happened before I was born. I was shocked and couldn't believe that this person would say such things and to alleviate my own confusion I spoke with other family members. They all reassured me that my father was never abusive to my mother and that I'm not blocking anything out of my memory. We all agreed that this family member has their own mental health issues that aren't being addressed and this is how they perceive things from the past and things now present. So, I just left it at that as no one was taking the statement seriously and we all knew it to be untrue.
Months later when I first overheard a conversation between this person and my mom I still wasn't that concerned. This person has issues not only with the family but with me in particular and the statements they made about me to my mom were hurtful, untrue and uncalled for. I was angered not by what was said about me but that this person, knowing that mom is often confused, would say things to add more confusion to her mind. I thought it very irresponsible and inconsiderate of this person to do so because that is exactly what happened. Mom became more confused and began to question the reasoning as to why I, of all people, returned home to help care for her. I explained to her that at the time we all felt that she would not survive to Christmas and I came home to be with her during that time and to be there for my father. Nothing more became of it and after a nap, mom was fine.
I overheard other conversations between my mom and this person and each one became more and more disturbing. There is a very fine line between being positive and encouraging with mom and encouraging the delusions. When mom gets angry at the walker and says how she hates it dad or I or the workers tell her that the walker is for her safety until she gets her balance back and that there is no shame in using a walker as almost all the people around her use them. We remind her that only a few months ago she couldn't walk at all and we try to encourage her to be grateful. Those are words of reassurance and encouragement and they are positive and they alleviate her anxiety. Mom is nothing short of a small miracle and it is possible that someday she will not need the walker but the reality is that she for now, she needs it and chances are that she will need it for the rest of her life. However this person made statements that if mom could walk without the walker she could move out of the care facility she is in and live on her own. What has happened is mom at times thinks that she should walk more without the walker and then she can leave the extended facility. The fact is that mom does not have good balance without the walker. She can walk without from a chair to a nearby table to keep her balance but no further. She has argued with the caregivers at the facility insisting that she does not need the walker. These beliefs put mom at risk. Mom could easily fall and break a hip or hit or head or anything. But the person who made these statements, the statements that enhance her delusions gave no consideration to the risk that it creates for mom or the facility or for the worry it creates for the rest of family, especially my dad. That I find very disturbing.
For a couple months now mom has worried about money and the power of attorney and how to pay for the facility. She worries that her grand-children's educational funds will be spent up paying for the facility. She worries that dad will sell the house and keep all the money. She is angry that she no longer has credit cards. Others in the facility worry and complain about the exact same things and many families and caregivers deal with these issues regularly. We tell mom that her pensions cover the expenses of the facility and they do. We remind her that she doesn't need money as everything she needs is at the facility and when she needs anything, and I mean anything from ice cream to support hose, dad runs out and gets it for it. When she wants to go shopping, dad takes her. Still the worries of money sit in her mind and some days that is all she can think about and it agitates her. In some of the conversations that mom had with this family member, they too mentioned the power of attorney and how it was there opinion that mom was capable to handle her finances and that they would help her with that but first she had to get the power of attorney revoked. On two occasions after conversations with this family member mom became so agitated that dad and I had to end the home visit and return her to the facility where the workers could calm her down and medicate her if necessary. One of these occasions I got so angry that I called other family members and asked them to speak with this other family member because perhaps they don't realize how it agitates mom and how their words effect her well being. I didn't think it was intentional, I thought they just aren't aware of how to communicate with a person who has an addled mind and how you have to choose your words wisely. I left to the rest of family to deal with and I hoped that this family member would understand and start talking about the weather instead, they didn't.
The other reoccurring delusion that mom has is that there is another woman living with dad during the week who leaves on the weekend. In the past she had a name, Mary but that morphed to a fat woman wearing size 18 clothes who was using the closet and then mom deciding that she was leaving dad as soon as she could. Most people at the facility simply laughed at the delusions, not in front of mom, but rather with me when I came to help out or to visit. Although very hurtful to hear and hurtful to see how it hurts my dad, we have to laugh at them because it's funny to imagine my father with another woman or someone like my dad carrying on with another woman. For myself, my dad, my daughter and the workers there really was no way to put a positive spin on her delusions so we would attempt to refute them with common sense. That doesn't work either as you can't reason with a person who's mind isn't working properly. More often than not we would all choose just to listen as she would natter on and after a few minutes, because her mind isn't all there, mom would think about something else and the conversation would change. In another conversation that I overhead between my mother and the family member it became very evident that the family member I write about has little concern for the well being of my mother. Rather than refute the delusions that mom spoke off, like other members of the family and friends who she had spoken with on the matter and on that day, this person said that they hire a moving van and in July come and collect mom, her things and help her to resettle in another city, in another province and that all my mom had to do was get the power of attorney back. I couldn't believe what I was hearing and the level of agitation that it created in mom was off the scale. I cried out of anger and I cried out of the realization that this family member is not in denial about mom's mental capability, they are not unaware of how to communicate with mom, they are not trying to help mom, rather they are trying to use mom's weak mind to manipulate the situation. If mom were actually to move and leave dad, live on her own and take care of her money (all of which she can't physically, mentally or competently do) then this person would have access to what money and investments mom has and with the state of mind that mom is in, they could easily manipulative mom for their own financial and personal gain. I can't even comprehend such behaviour by anyone let alone a member of our family and by definition it's a form of elder abuse. I was sickened by the obvious and struggled to find answers as to why this person, this family person would behave in such a way. Is this person so greedy that they will say and do things with the intention of gaining access to mom's finances? Do they hate me and dad so much that they say and do things that will upset mom and in turn make things difficult for dad and myself? Are they delusional or mentally ill themselves and really aren't aware of what they are doing? I simply do not know the reasoning and I never really will but what I do know it that their actions and behaviors are harmful to my mother and her well being but I can't stop it and I feel helpless.
I brought my concerns to other family members. Really nothing can be done and no one wanted to pursue it further because the rest of the family is well aware of mom's limitations, so nothing was said or done. I was left with a very saddened and broken heart and not because I felt no one was listening but because this was another family member who I had trusted and who I had once loved. It breaks my heart to see the confusion this person's statements had for mom and how it bothered her to the point of where my mom is once again a victim of the terrors that are in her own mind. For a few months mom was normal and our relationship was normal and enjoyable. If I left the room she would ask, where's Lisa-Maire and would ask the workers when my dad and I were coming and we would have normal conversations do things together. Life was good, well as good as it gets and this family member has awakened the demons that had been sleeping in mom and they have done that intentionally. When the family member decided to come for what is now an extended visit I simply had to put everything in God's hands, and as difficult as that is for me to do, that's what I've done. So for over a week now mom won't speak to me because this family member told her not too. That hurts, that hurts a lot. Other caregivers and workers on the wing that mom lives on have also over heard what this person says to mom and how they communicate with her and they have concerns too as they see how it agitates and creates anxiety for mom. The other caregivers and workers have noticed how it is affecting my father and his anguish is showing in his health. The other caregivers and workers have noticed how it hurts me because my smile isn't as big as it was. But I tell them not to worry because this person will eventually leave and mom will have a different delusion and that the dust will settle. I said this just yesterday though inside, my heart was throbbing because it is painful.
As I was speaking with another caregiver and explaining to her not to worry one of the residents called me.
"Lisa-Marie," she said. "I can hear you, come over here." This resident is very blind and knows me by the sound of my voice. So I went over to her to see what she wanted.
"Did you make Joan an onion sandwich,' she asked abruptly.
I answered that I had and I was confused by the question and thinking that maybe the smell of sandwich or smell of Joan's breath was disturbing to this resident. Instead she asked how I made the sandwich and I told her with whole wheat bread, butter, mayo, salt, pepper and white vidalia onions.
She smiled at me and said "White onions, right".
"Yes," I responded.
"Perfect," she said. "Can you make me one for supper tomorrow only I like lots of mayo on mine." I smiled and said I would and gave her a hug.
In that moment all the the worry, the fear, the anger and the hurt was gone. It was gone because I realized that people know what is in our souls and that the residents, the staff, the rest of my family and even my mother know that my soul is good. So does God and God really knows what is in our souls so now I fear for this family member because I'm pretty sure that they are digging themselves to hell.
Monday 6 May 2013
The Dementia Diary: The Dementia Diary: Stupid is as stupid does.
The Dementia Diary: 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...
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