Thursday 29 November 2012
The Dementia Diary: Up and down like a toilet seat
The Dementia Diary: Up and down like a toilet seat: Mom had drumming this morning. Like most of the residents, mom enjoys it. They use maraca's, shakers, a variety of drums and the spoons in...
Up and down like a toilet seat
Mom had drumming this morning. Like most of the residents, mom enjoys it. They use maraca's, shakers, a variety of drums and the spoons instruments that my dad makes. After a drum circle all the residents are more coherent and less agitated. The drum circle is always before lunch so it makes the mealtime with mom that much more enjoyable because I know, she will be there not just in body but in mind too.
Lunch today was no different. Mom ate (drank) her lunch and we were able to partake in simple table talk but it qualifies as a conversation all the same. We talked about her card from Rosalie, and old friend. Rosalie recently had a driving assessment and she is no longer able to drive. That can be a big issue for many seniors as it makes them even less independent and it can be difficult for a senior who has driven for 50 or more years to make that sudden change. I asked mom if she missed driving and she said no but she also said she missed Rosalie and in a roundabout way said Rosalie can't come to visit. I asked mom what she did miss and she answered "Going out".
The facility has an outing at least once a week. Some might be to the casino, some are for shopping and some are for coffee and pie in the country and those mom could go on and would enjoy. I went to the rec people as asked that my mom be included in the next coffee and pie outing or something along that line. They agreed to and providing that on the day of the excursion, that she is up to it, her and I will go. She'll like that and I'm sure I will too.
I had some errands to do and mom had nothing on her agenda so I left for a couple hours to do some much needed self-care. Nothing like a good massage to ease a person of anything that ails them. I was hoping to completely relax and lose myself for 45 minutes and instead I found myself asking the massage therapist if massage would be beneficial to dementia patients. A discussion ensued and I learnt about all benefits that many types of massage would have for dementia patients. I mentioned to him how just a few weeks ago I saw how a simple soak in warm water and a hand massage afterwards eased my mother's hand tremors and he recommended doing that daily if possible and also mentioned that it will help with her edema in her hands.
He told me how a foot massage would do the same and would ease agitation or anxiety and that it will also help with the edema in her feet. I have almond oil that I massage my knee with but he recommended something with lavender in it and before I left, I bought some for mom.
When I returned to the facility and to mom she had that look. It's a look that I have come to despise. It's the look of a deer in the headlights where her eyes are big and she is watching everything around her. It's the look that tells me she isn't there. She wasn't.
When she isn't there mom is more alert than in the past and will still communicate quite well. I slowly approached her and said "Hi, mom". She immediately asked who I was and I told her that my name is Lisa and I'm her daughter. She then told me that she doesn't have a daughter. I told her that she does have a daughter and I am her daughter. She told me again that she doesn't have a daughter and was starting to get more agitated. I could see that she was anxious so I wheeled her into her room and armed with lavender oil that I had just purchased, I asked if she would let me massage her hands. She agreed and I gently massaged her hands. After 5 minutes her tremors were gone and she was more relaxed.
Now, I'm not a feet person. I don't like people touching my feet and I especially don't like touching other peoples feet. In fact, I don't like feet touching me on a couch or in a bed and not even my kids feet do I let touch me. Regardless, I asked mom if she wouldn't let me massage her feet and she said yes. So, I removed the snoozies I bought for her on Saturday and warmed the oil by rubbing my hands. With what I'm sure was a grimace of my face I proceeded to massage mom's left foot just as the massage therapist had described. Gently with my thumbs in the sole of the foot and then individually on each toe and in between the toes. I then massaged the right foot in the same manner. By the end mom was calm. It didn't bring her cognitive abilities back, but at least she was calm. She said "Thank you nurse" and throughout the dinner hour and even when I said good night, I was her nurse, not her daughter, but her nurse.
The Lewy-body dementia that mom suffers from differs from Alzheimer's. The main difference is that patients like my mom will have striking fluctuations in their cognitive performance, especially early on and in the end stages. An end stage Alzheimers patient will gradually lose their cognitive abilities and once they are gone, they don't come back. When they lose the ability to talk, they don't anymore and once they don't recognize people, they usually never do again. An end stage Lewy-body patient will have fluctuations like I describe, where in the morning she is fine but a few hours later she isn't and sometimes she will go into a mute stupor. When her mind is working I let myself believe sometimes that she is getting better and I shouldn't do that because only hours later she isn't and my heart sinks again. There are days when I wish that she had just plain Alzheimers because then at least I would know what I'm in for everyday and there would be no changes and no surprises. But when I think like that I always correct myself because with the Lewy-body at least I still get glimpses of my mom and who she was and who she still is. Either way I could really do without the up and down like a toilet seat. It's very draining and some days I wish I could just flush it all away.
Lunch today was no different. Mom ate (drank) her lunch and we were able to partake in simple table talk but it qualifies as a conversation all the same. We talked about her card from Rosalie, and old friend. Rosalie recently had a driving assessment and she is no longer able to drive. That can be a big issue for many seniors as it makes them even less independent and it can be difficult for a senior who has driven for 50 or more years to make that sudden change. I asked mom if she missed driving and she said no but she also said she missed Rosalie and in a roundabout way said Rosalie can't come to visit. I asked mom what she did miss and she answered "Going out".
The facility has an outing at least once a week. Some might be to the casino, some are for shopping and some are for coffee and pie in the country and those mom could go on and would enjoy. I went to the rec people as asked that my mom be included in the next coffee and pie outing or something along that line. They agreed to and providing that on the day of the excursion, that she is up to it, her and I will go. She'll like that and I'm sure I will too.
I had some errands to do and mom had nothing on her agenda so I left for a couple hours to do some much needed self-care. Nothing like a good massage to ease a person of anything that ails them. I was hoping to completely relax and lose myself for 45 minutes and instead I found myself asking the massage therapist if massage would be beneficial to dementia patients. A discussion ensued and I learnt about all benefits that many types of massage would have for dementia patients. I mentioned to him how just a few weeks ago I saw how a simple soak in warm water and a hand massage afterwards eased my mother's hand tremors and he recommended doing that daily if possible and also mentioned that it will help with her edema in her hands.
He told me how a foot massage would do the same and would ease agitation or anxiety and that it will also help with the edema in her feet. I have almond oil that I massage my knee with but he recommended something with lavender in it and before I left, I bought some for mom.
When I returned to the facility and to mom she had that look. It's a look that I have come to despise. It's the look of a deer in the headlights where her eyes are big and she is watching everything around her. It's the look that tells me she isn't there. She wasn't.
When she isn't there mom is more alert than in the past and will still communicate quite well. I slowly approached her and said "Hi, mom". She immediately asked who I was and I told her that my name is Lisa and I'm her daughter. She then told me that she doesn't have a daughter. I told her that she does have a daughter and I am her daughter. She told me again that she doesn't have a daughter and was starting to get more agitated. I could see that she was anxious so I wheeled her into her room and armed with lavender oil that I had just purchased, I asked if she would let me massage her hands. She agreed and I gently massaged her hands. After 5 minutes her tremors were gone and she was more relaxed.
Now, I'm not a feet person. I don't like people touching my feet and I especially don't like touching other peoples feet. In fact, I don't like feet touching me on a couch or in a bed and not even my kids feet do I let touch me. Regardless, I asked mom if she wouldn't let me massage her feet and she said yes. So, I removed the snoozies I bought for her on Saturday and warmed the oil by rubbing my hands. With what I'm sure was a grimace of my face I proceeded to massage mom's left foot just as the massage therapist had described. Gently with my thumbs in the sole of the foot and then individually on each toe and in between the toes. I then massaged the right foot in the same manner. By the end mom was calm. It didn't bring her cognitive abilities back, but at least she was calm. She said "Thank you nurse" and throughout the dinner hour and even when I said good night, I was her nurse, not her daughter, but her nurse.
The Lewy-body dementia that mom suffers from differs from Alzheimer's. The main difference is that patients like my mom will have striking fluctuations in their cognitive performance, especially early on and in the end stages. An end stage Alzheimers patient will gradually lose their cognitive abilities and once they are gone, they don't come back. When they lose the ability to talk, they don't anymore and once they don't recognize people, they usually never do again. An end stage Lewy-body patient will have fluctuations like I describe, where in the morning she is fine but a few hours later she isn't and sometimes she will go into a mute stupor. When her mind is working I let myself believe sometimes that she is getting better and I shouldn't do that because only hours later she isn't and my heart sinks again. There are days when I wish that she had just plain Alzheimers because then at least I would know what I'm in for everyday and there would be no changes and no surprises. But when I think like that I always correct myself because with the Lewy-body at least I still get glimpses of my mom and who she was and who she still is. Either way I could really do without the up and down like a toilet seat. It's very draining and some days I wish I could just flush it all away.
Wednesday 28 November 2012
The Dementia Diary: Is it half full or half empty
The Dementia Diary: Is it half full or half empty: Mom has had a lot of visitors in the last couple days. My aunt and uncle and many family friends and course me and dad. Everyone agrees ju...
Is it half full or half empty
Mom has had a lot of visitors in the last couple days. My aunt and uncle and many family friends and course me and dad. Everyone agrees just how much more alert she is. Mom is actually following conversations and able to put her two bits in. She isn't simply parroting what she hears, she is getting it and participating in her surroundings the best she can. It isn't complete sentences and most times off topic regardless the simple glimpses of her that I was getting are now hours again and I love it, I absolutely love it. She still is still sundowning and yes she will still parrot but when she is there, she's really there and she lets me know it. Mom has attitude again and for a couple hours, it's just like old times.
The other day she remembered that she was a smoker and said "Get me a cigarette". I reminded her that she doesn't smoke and she said with anger "Yes I do!!" and for a minute we were arguing back and forth. All the time I was thinking that I have my mother back. Another day she said "I'm constipated," and demanded that I get her the all mighty orange juice (read an earlier blog to understand this). Yesterday at lunch, while I was busy helping Evelyn eat her ice cream, mom slowly moved her hand and I helped her to grab the spoon. She wanted the ice cream that was in front of her and as I fed Evelyn, I watched as mom tried to hard to use the spoon. Sadly, she threw it down in frustration because physically she isn't better and she is well aware of that too.
I was also hoping that physically she would improve. I tested that with minced food, praying that she would swallow and that the connection had returned, it hasn't. Yes, she can swallow liquids but even puree must be chased with a drink of water from a straw. The ice cream melts to liquid so at least she can still enjoy that. Her hands and her body still tremble and her muscles are rigid. She still can't walk. She still can't use her hands. She still can't dress herself. She still must rely on everyone around her. She is still incontinent and she still cries her very sad tears.
Yesterday afternoon dad and I had lunch with my aunt and uncle. Mom had music therapy so we left her in the capable hands of the staff. I returned at dinner and in between sips I asked her how music therapy was. Mom told me that she didn't go and I asked why not. Mom looked right at me and said "Lisa, I won't get better". She has said that before but it was the way she said it that struck me. It was like she was saying, "Lisa, face it, I'm not going to get better and music therapy isn't going to make me better". I asked what she did instead and she told me "I watched TV and wet my pants". Again, it wasn't what she said that had me surprised, it was the flippant tone she said it with and look in her eyes, as if she said "Well, I wasn't running a marathon, I watched an old movie to get my mind off of things and then I pissed my pants because I wear diapers, really for someone so smart, you can really be stupid".
I am not a is the glass half full or half empty person. Instead, my thoughts are, whose thirsty. That's how I have to be with this too. Is her mind half full or half empty, it doesn't matter. I will drink up every thought and every moment that I have. Good or bad, happy or sad, I'll drink it in.
The other day she remembered that she was a smoker and said "Get me a cigarette". I reminded her that she doesn't smoke and she said with anger "Yes I do!!" and for a minute we were arguing back and forth. All the time I was thinking that I have my mother back. Another day she said "I'm constipated," and demanded that I get her the all mighty orange juice (read an earlier blog to understand this). Yesterday at lunch, while I was busy helping Evelyn eat her ice cream, mom slowly moved her hand and I helped her to grab the spoon. She wanted the ice cream that was in front of her and as I fed Evelyn, I watched as mom tried to hard to use the spoon. Sadly, she threw it down in frustration because physically she isn't better and she is well aware of that too.
I was also hoping that physically she would improve. I tested that with minced food, praying that she would swallow and that the connection had returned, it hasn't. Yes, she can swallow liquids but even puree must be chased with a drink of water from a straw. The ice cream melts to liquid so at least she can still enjoy that. Her hands and her body still tremble and her muscles are rigid. She still can't walk. She still can't use her hands. She still can't dress herself. She still must rely on everyone around her. She is still incontinent and she still cries her very sad tears.
Yesterday afternoon dad and I had lunch with my aunt and uncle. Mom had music therapy so we left her in the capable hands of the staff. I returned at dinner and in between sips I asked her how music therapy was. Mom told me that she didn't go and I asked why not. Mom looked right at me and said "Lisa, I won't get better". She has said that before but it was the way she said it that struck me. It was like she was saying, "Lisa, face it, I'm not going to get better and music therapy isn't going to make me better". I asked what she did instead and she told me "I watched TV and wet my pants". Again, it wasn't what she said that had me surprised, it was the flippant tone she said it with and look in her eyes, as if she said "Well, I wasn't running a marathon, I watched an old movie to get my mind off of things and then I pissed my pants because I wear diapers, really for someone so smart, you can really be stupid".
I am not a is the glass half full or half empty person. Instead, my thoughts are, whose thirsty. That's how I have to be with this too. Is her mind half full or half empty, it doesn't matter. I will drink up every thought and every moment that I have. Good or bad, happy or sad, I'll drink it in.
Monday 26 November 2012
The Dementia Diary: Mom's brain must be one in a million
The Dementia Diary: Mom's brain must be one in a million: My mother was a young woman when she developed mental illness. I use the term mental illness because not only was she mentally ill (at time...
Mom's brain must be one in a million
My mother was a young woman when she developed mental illness. I use the term mental illness because not only was she mentally ill (at times) but no one specific diagnosis was ever given. There is one that was the baseline diagnosis, Bi-polar disorder (or manic depression as it was called). Even with that baseline though it was then classified to a type 1, then a type 2 and then a shrink threw in rapid cycling once and another doctor added Schizoid Affective Disorder and another doctor mentioned Paranoid Schizophrenia once and yet another shrink threw in Narcissistic Personality Disorder. It seems to me that whenever a new mental illness was created to add more pages to DSM (diagnostic and statistical manual of mental disorders) then a doctor would add another page to mom's diagnosis. With every new edition and addition came a new drug or in mom's case drugs. Over the years I'm sure my mother has taken every psychotropic drug there ever was. When you add in the fact that she's been treated with ECT (electro-convulsive treatment) enough times to light up a small city, it's really quite amazing that she has any mind left at all.
The sad part of mom's mental illness is that it's a factor in the dementia. For the last 7 years as mom's mental health continued to decline, me, my father and the family all attributed it to mental illness. Her psychiatrist did the same and so each time a new symptom developed, he would add another drug or take away another drug or add a different classification of drug to negate the side effects that we all thought were caused by either mental illness or the drugs she was taking. Really, her medications were changed so often that the pharmacy would not do week long bubble packs. What makes this sad is not only was my mother essentially treated like a lab rat by the psychiatrists but an error in judgement on our and their parts missed what is now obvious. Mom had been suffering with dementia for years and it wasn't until the physical symptoms of dementia began was she then and only then properly diagnosed. Had mom been diagnosed with the obvious let's say 4 years ago, then some of the drugs for dementia could have been prescribed to slow the process. Well, now it's to late for that and giving her those drugs now would have no effect what so ever.
When mom was getting physically ill early in the year, I begged dad to take her to Canmore hospital and not to the usual Rockyview psych ward. I told him that this just doesn't seem like her normal mental illness and maybe the medications need to be looked at and Dr. Fedema would do that. Dad agreed and the first thing that Dr. Fedema did was wean mom off of 8 different medications. When that weaning process was done mom's physical symptoms were getting worse and Dr. Fedema called in a Geriatric specialist. After a very intense assessment, the diagnosis of dementia was given.
Over the next few months, mom's physical symptoms got worse and worse. Dad started the paperwork for admission to an extended care facility but he always intended to keep her at home as long and he could and he intended that would be to the very end. As I mentioned before, Dad always thought she would get better and even today, there is a part of him that still does. I also think that dad feels a little guilty because I know that I do. If we had paid more attention to mom's symptoms, then we would have seen them and not been so complacent with the doctors. There are days when I pray for forgiveness because I should have seen it, but I was too wrapped up in my own life.
When I moved here one of the first things I did was request to see what medications mom was still on. Many of them were psychotropic drugs that I felt were no longer needed. Dad agreed and so did the nurses and the nurse practitioner. So mom was weaned off of those drugs and since her blood pressure had been stable (especially since she lost 50 lbs.), they weaned her off of those drugs too as they can cause drowsiness. I must say that just in little over a week of being completely off all but one drug, my mom is the most alert that she's been in months. Everyone who cares for her and sees her often agrees. There have been no psychotic episodes and if she is little depressed on some days, well given the situation, that's normal. She's there more often and I like it. At lunch yesterday she said to Evelyn "Wake up Evelyn, it's time to eat lunch". I smiled because Evelyn was on the nod and mom knows that I help Evelyn eat and that she has to be alert or she might choke.
What bothers me the most about this isn't that we missed the obvious. Rather it's the irony of it all. Mom needed all those treatments and she needed all of those medications. They prevented her from getting psychotic and they brought her out of catatonic depressions and made life bearable for her and for all of us. She was a slave to her mind for almost all of her life and yet today she doesn't need those drugs but is now tortured by her mind with dementia. It's simply not fair. Mom's brain really must be one in a million and she's one in a million too and I'm so very glad that she's my mother.
The sad part of mom's mental illness is that it's a factor in the dementia. For the last 7 years as mom's mental health continued to decline, me, my father and the family all attributed it to mental illness. Her psychiatrist did the same and so each time a new symptom developed, he would add another drug or take away another drug or add a different classification of drug to negate the side effects that we all thought were caused by either mental illness or the drugs she was taking. Really, her medications were changed so often that the pharmacy would not do week long bubble packs. What makes this sad is not only was my mother essentially treated like a lab rat by the psychiatrists but an error in judgement on our and their parts missed what is now obvious. Mom had been suffering with dementia for years and it wasn't until the physical symptoms of dementia began was she then and only then properly diagnosed. Had mom been diagnosed with the obvious let's say 4 years ago, then some of the drugs for dementia could have been prescribed to slow the process. Well, now it's to late for that and giving her those drugs now would have no effect what so ever.
When mom was getting physically ill early in the year, I begged dad to take her to Canmore hospital and not to the usual Rockyview psych ward. I told him that this just doesn't seem like her normal mental illness and maybe the medications need to be looked at and Dr. Fedema would do that. Dad agreed and the first thing that Dr. Fedema did was wean mom off of 8 different medications. When that weaning process was done mom's physical symptoms were getting worse and Dr. Fedema called in a Geriatric specialist. After a very intense assessment, the diagnosis of dementia was given.
Over the next few months, mom's physical symptoms got worse and worse. Dad started the paperwork for admission to an extended care facility but he always intended to keep her at home as long and he could and he intended that would be to the very end. As I mentioned before, Dad always thought she would get better and even today, there is a part of him that still does. I also think that dad feels a little guilty because I know that I do. If we had paid more attention to mom's symptoms, then we would have seen them and not been so complacent with the doctors. There are days when I pray for forgiveness because I should have seen it, but I was too wrapped up in my own life.
When I moved here one of the first things I did was request to see what medications mom was still on. Many of them were psychotropic drugs that I felt were no longer needed. Dad agreed and so did the nurses and the nurse practitioner. So mom was weaned off of those drugs and since her blood pressure had been stable (especially since she lost 50 lbs.), they weaned her off of those drugs too as they can cause drowsiness. I must say that just in little over a week of being completely off all but one drug, my mom is the most alert that she's been in months. Everyone who cares for her and sees her often agrees. There have been no psychotic episodes and if she is little depressed on some days, well given the situation, that's normal. She's there more often and I like it. At lunch yesterday she said to Evelyn "Wake up Evelyn, it's time to eat lunch". I smiled because Evelyn was on the nod and mom knows that I help Evelyn eat and that she has to be alert or she might choke.
What bothers me the most about this isn't that we missed the obvious. Rather it's the irony of it all. Mom needed all those treatments and she needed all of those medications. They prevented her from getting psychotic and they brought her out of catatonic depressions and made life bearable for her and for all of us. She was a slave to her mind for almost all of her life and yet today she doesn't need those drugs but is now tortured by her mind with dementia. It's simply not fair. Mom's brain really must be one in a million and she's one in a million too and I'm so very glad that she's my mother.
Saturday 24 November 2012
The Dementia Diary: Reindeer poop
The Dementia Diary: Reindeer poop: Last night I made 160 Reindeer poops for the Christmas market at mom's new home. Really Reindeer poop are chocolate macaroons, but they ar...
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