Tuesday 2 April 2013
The Dementia Diary: Filial Piety
The Dementia Diary: Filial Piety: In other cultures, care giving for the elderly is a natural occurrence. In many Chinese families, parents move in with their children when...
Filial Piety
In other cultures, care giving for the elderly is a natural occurrence. In many Chinese families, parents move in with their children when their children get married. The parents help raise their children’s’ children, and, when the parents themselves need care, their children are prepared to care for their parents until the end of their life. Many Asian countries and cultures, including the Philippines and Vietnam, also hold to these traditions. Japan even has a national holiday called Respect for the Aged Day and in East Asian countries, like India and Pakistan, the eldest son WILL take care of and provide for his parents.
In African history, families stayed together, no matter how big they grew. Families of more than 50 people started their own villages, with the eldest grandfather and grandmother leading the rest. This is also found in many tribes of South America, Australia. In the North American First Nations people, the tribes to this day, hold the utmost respect for their elders and do what they can to care and provide for them.
However, in the westernized world our seniors have become invisible. We herd our seniors into large, impersonal institutions where they are out of everyone's view. It's almost like they no longer exist and sadly for some, even a simple visit is considered a chore or an inconvenience but their own family. Now, let's add the recent Alberta government budget cuts that adds injury to the insult of how we treat our elderly.
On March 7th when the provincial government delivered the new budget they allotted 2.1 billion dollars, over the next three years, to hospitals, family clinics and long-term care facilities. 2.1 billion dollars seems like a lot of money and most Albertans seem pleased. Our population is growing and continues to grow and it will continue to do so over the next three years. People still get sick and still need to see doctors and specialists and in all honesty, it seems like we are getting sicker. The rates of cancer continue to rise as does heart disease and diabetes and they will continue to rise over the next three years. Our population also continues to grow older and they will continue to do so over the next three years. More seniors will develop Alzheimer's and dementia and many, many, many more will require long-term care over the next three years. Factor in inflation, cost of living and a few other economic factors then the 3% increase isn't an increase at all, it is actually a cut.
By the end of this week, a month after the budget was delivered, the cuts will be felt at the facility where my mother resides and the society that runs hers and five others in the province. At the end of this week 53 full-time positions and 17 part-time positions have been eliminated from mom's home and the five others. This is just one society. There are 192 long-term facilities across this province that care for our elderly and those facilities will be doing similar cuts. Now, my math isn't that great but statistically it means that instead of a ratio of one health care worker for every eight patients, the new ratio will be one health care worker for every 13 patients. With that ratio the word 'healthcare' is now an oxymoron. Our seniors in extended care across this province need more care, not less.
I hope that those of you who read this blog realize that the care of our elderly is a societal responsibility. There are only a few countries that get that concept and had adapted health care and seniors care accordingly. In a post on the Facebook page attached to this blog I mentioned the city of Bruges in Belgium where they have adapted policies that everyone adheres to that keep seniors, and especially those with dementia, safe and provided for. The video is called Dementia: Pioneering City of Bruges, look for it on line. In the Scandinavian countries, the seniors are encouraged to remain at home as long as they can. To allow this, doctors and nurses are on call 24 hours a day and do regular house calls to ensure the health and safety of their seniors and in some areas, even the dentists will do house calls. In addition, health care workers will come to cook, clean, do personal hygiene and spend time with the seniors still at home. They have adult day care centres, not just simple one day a week programs, rather entire adult day care centres with free transportation to and from the centre. When the time comes that a Scandinavian senior needs extended care, the facilities are mainly built with wide open spaces in the back, that are secure, but allow residents to walk and get fresh air and enjoy nature. Here's the kicker, most of the services are free and the extended health care facilities cost no more than 15% of the seniors pension.
Sweden, Denmark and Norway all seem like a senior's Utopia and as a caregiver to my mom, I wish we could move there. That of course is an impossible dream. But what I can do is ask the readers of this blog to do two things. First, volunteer. With all the cuts that are happening in Canada and other countries, volunteers are now needed more than ever. A couple hours a week of your life can make so much difference to a facility struggling to keep activities going and it can make so much more of a difference in the life of a senior. Without your grandparents and your parents, where would you be? Well, you wouldn't be here, so we owe them and should respect them for gifting us with those lives.
Secondly, send some emails the premiere and the MLA's of your area. Tell them that we need more funding for the care of our seniors, not less and that the candy-coated budget is bullshit. Here are the names, addresses, phone numbers and emails of some of the MLA's in this region.
Dr. David Swann, MLA Calgary-Mountain View
calgary.mountainview@assembly.ab.ca
Constituency Office: 102, 723 - 14 Street NW, Calgary, AB T2N 2A4
403-216-5445 (Calgary constituency office) 780-427-2292 (Legislature office)
Rob Anderson, MLA Airdrie
airdrie@assembly.ab.ca
Constituency Office: 209 Bowers Street, Airdrie, AB T4B 0R6
403-948-8741 (Airdrie constituency office) 1-888-948-8741 (Toll-free) 780-415-0975 (Legislature office)
Ron Casey, MLA Banff-Cochrane
banff.cochrane@assembly.ab.ca
Constituency Office: 109, 1205 Bow Valley Trail, Canmore, AB T1W 1P5
403-609-4509 (Canmore Constituency office) 1-866-760-8281 (Constituency office, toll-free) 780-415-8429 (Legislature office)
CONSIDERING I USED TO BABYSIT HIS GIRLS HE'D BETTER DAMN WELL DO SOMETHING!!!
Hon. Cal Dallas, MLA, Red Deer-South
reddeer.south@assembly.ab.ca
Constituency Office: 503, 4901 - 48 Street, Red Deer, AB T4N 6M4
403-340-3565 (Red Deer constituency office) 780-643-6225 (Legislature office)
Hon. Teresa Woo-Paw MLA, Calgary-Northern Hills
calgary.northernhills@assembly.ab.ca
Constituency Office: 103, 200 Country Hills Landing NW, Calgary, AB T3K 5P3
403-274-1931 (Calgary constituency office) 780-415-2363 (Legislature office)
Kerry Towle, MLA, Innisfail-Sylvan Lake
innisfail.sylvanlake@assembly.ab.ca
Constituency Office: #18, 4804 - 42 Avenue, Innisfail, AB T4G 1T4
403-227-1500 (Innisfail constituency office) 1-888-655-2535 (Toll-free) 780-427-1865 (Legislature office)
Associate Minister of Seniors, Hon. George VanderBurg
whitecourt.steanne@assembly.ab.ca
227 Legislature Building 10800 97 Avenue, Edmonton, AB T5K 2B6
780-415-9550 (Legislature office)
Just for good measure any of the international readers of this blog could also make a difference by contacting our provincial leader, and please do so. I want her to realize the gravity of the situation and the importance of the simple fact the dementia is not just forgetting where your keys are. It's a terminal illness.
Premier of Alberta Hon. Alison Redford
calgary.elbow@assembly.ab.ca
307 Legislature Building 10800 97 Avenue, Edmonton, AB T5K 2B6
780-427-2251 (Legislature office)
Confucius, the famous Chinese philosopher, championed that our elders deserve our complete and total respect. It's called filial piety and the wisdom in that is ancient.
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| One of the workers who is layed off, mom just loves her. |
Sunday 10 March 2013
The Dementia Diary: Bittersweet
The Dementia Diary: Bittersweet: When a person is physically ill with heart disease or cancer or any major illness, coming home, even for a visit is welcomed and celebrated ...
Bittersweet
When a person is physically ill with heart disease or cancer or any major illness, coming home, even for a visit is welcomed and celebrated and happy. I thought it would be the same for a person with dementia and I found out, I was wrong.
Since mid December my dad and I have been working with mom towards the goal. The goal was getting mom physically well enough to come home, for visits and that was her goal too. So together with the staff and some private help we have spent the last few weeks working with mom and getting stronger and getting her able to do things, with help, that for 9 months, she wasn't able to do. That includes everything from walking with a walker to helping her to use the toilet (she is not using the adult diapers anymore and back to using the depends). Today was the day that we brought mom home for the fist time since July of 2012.
I would like to be able to say that it was a joyous and happy event. I would like to say that there were tears of happiness flowing down smiling cheeks. I would like to say that mom was pleased and dad was pleased and that we were a big, happy family again. Well, the truth hurts and the truth is that is was 7 hours of hell.
For 6 of the 7 hours home, mom did nothing but accuse and complain and yell and call us names. I have never heard my mom refer to my dad as a 'bastard' until today. Me, well, the woman has called me a bitch too many times to count but never as much as she did today and she even threw the f word in once or twice for good measure. I knew this is how it would be. I knew that nothing is ever good enough for mom because that is just how she is as a person and even with dementia that doesn't change. I knew she would complain and I tried to prepare myself for it. If this had been before the dementia, when anyone could still reason with mom and when she was still able to see the sense of things and situations, then today would have pleasant. But mom has dementia and trying to reason or make a dementia person understand anything is an exercise in futility.
It started in the car. Mom bitched at dad for selling his van. He sold that van 4 years ago. Then when we got to the house she insisted she could get out of the car on her own and got very aggressive with us when we tried to help. So dad and I let her try on her own and when she couldn't do and fell back into the car seat (thankfully not on her ass on the cement floor) then she called us useless as tits on a bull. Then she complained about the ramp dad had built so that she can get into the house. Then when we got her into the house she complained that the floor was dirty (it wasn't). When she sat in her chair then she complained that the windows weren't clean enough and so I reminded her that there is no sense in cleaning windows in winter. So she called me lazy and that I am just looking for excuses not to do any housework. She then demanded that I clean them, inside and out and when I refused she called me a bitch, that was the first 'bitch' of many.
I told dad to get the phone so mom could call some friends and family and it would distract her mind and perhaps change her mood. She talked with her dear friend Rosalie and it seemed to brighten her mood slightly. For the first time in awhile I actually heard mom admit that she has just a little bit of dementia. Then she wanted to call Sylvia Slavin and once again I had to remind her that Sylvia passed away 3 years ago. She pretended to remember. Then we tried my brother Doug and he wasn't home so that pissed her off and I don't know why or what goes on in mom's demented mind but it was my fault that he wasn't answering his phone. Then we called Aunt Clara, who thank God answered. Again, they had a 'nice' conversation and mom asked about her late sister Jackie and about the funeral and then she was crying and sad. Aunt Clara knew how to change the conversation and they started talking about things and mom asked that Clara and Reg help to get her out of the home that's she in because she hates it. Then she wanted to talk to David because she insisted that she hasn't spoken to him in years but when we called there was no answer so we called her brother Gene but because she was pissed off about not being able to speak with David, she didn't really want to talk to Gene for long and the conversation was short.
After lunch, where she complained that the tomato and cheese sandwich was too wet???? we thought we would take mom for a little drive. On the walk down the ramp, the same ramp she complained about an hour earlier, I tried to explain why dad built it the way he did, that the little ledges are so the walker wheels wouldn't run away on her when she leaves the house. Then she complained that I'm a know it all.
About 10 minutes into the drive I wanted to throw myself out the door of the moving car. I swear mom seized the opportunity to berate me for everything from the color of my hair to the way I breathe and everything in between. Thankfully my dad could see that the drive wasn't going to work so after half an hour, we returned home where she again complained about the ramp. I didn't bother explaining this time.
Mom wanted to tour the house to see if 'Mary' was around. I actually said a prayer at that point for patience, and lots of it. So around the house we went. Mom complained about the pictures on the walls, the state of the oven (it's spotless), the sheets on the bed, and then into the bathroom we went. She opened up her makeup drawer and all the makeup except her lipsticks were there. She complained about that and then demanded that I tidy of the drawer. I refused and again I was a bitch. Then to her closet where she insisted that dad had given away all of her clothes and even though all of her clothes were right in front of her, hanging and folded the same way they have been for years, she still insisted her clothes were gone and that these clothes were 'Mary's'. I sat her on the bed and ran down stairs and grabbed my computer where I opened all the pictures I have stored of mom over the years and back upstairs I went. I showed her pictures of her wearing the clothes that were hanging in the closet. The evidence was right there in front of her to see. I showed her a picture of her and Dylan and her grad and the dress she was wearing and I pulled the dress out of the closet. I showed her a picture of her and Ryley in Kamloops at his guitar recital and the shirt and capris she was wearing in the picture and then I pulled the same clothes from her closet and showed her the clothes. If mom didn't have dementia she would believed me instead I was a 'fucking evil bitch' because I am going to great lengths to cover up dad's affair with 'Mary'. In mom's mind I had gone to Calgary and taken the photos with me and bought clothes to match the pictures and then hung them in her closet. Wow!!!
When she wanted to take a nap, I was glad, at least an hour of peace. She wanted to use the toilet first so I helped her on the biffy. The depends she was wearing was full and mom asked me to get a new one, I did. I then tried to help remove the old one so I bent down to pull it off and she pushed me over and screamed at me "I CAN DO IT MYSELF". That is the first time mom has ever gotten physical with me and I was shocked. It's a good thing I stayed because even while sitting on the toilet and trying to put on the clean depends, she fell forward and I was there to catch her. Then she wanted my help. I then helped her to bed where she complained some more about too much light and then too little light and then too loud and then finally she fell asleep.
For an hour there was peace, no bitching, no complaining, no criticism, no anger, no nagging and no accusations, just one hour of peace. It was nice and I watched the clouds slip away and the blue sky peer through and I cried. I cried out of frustration. It doesn't matter how times I tell myself "Leis, it's just the dementia talking" it still hurts. It doesn't matter how many other caregivers, spouses, children or workers are going through the same thing, it still hurts. It doesn't matter how many words of praise I am given, it still hurts. Dementia hurts everyone. This is a pain I have never known and I hope to never know again. This is the life of the dementia caregiver.
On the plus side, mom was able to come home and although this visit wasn't what we had hoped for, I hope other visits will be better. When spring comes we can take mom on day trips to Canmore and for visits with old friends and for pie in Bragg Creek and perhaps the zoo or a show or a play. I still look forward to more time with mom and all the time I can get, good or bad. It's bittersweet but then I always liked dark chocolate.
Since mid December my dad and I have been working with mom towards the goal. The goal was getting mom physically well enough to come home, for visits and that was her goal too. So together with the staff and some private help we have spent the last few weeks working with mom and getting stronger and getting her able to do things, with help, that for 9 months, she wasn't able to do. That includes everything from walking with a walker to helping her to use the toilet (she is not using the adult diapers anymore and back to using the depends). Today was the day that we brought mom home for the fist time since July of 2012.
I would like to be able to say that it was a joyous and happy event. I would like to say that there were tears of happiness flowing down smiling cheeks. I would like to say that mom was pleased and dad was pleased and that we were a big, happy family again. Well, the truth hurts and the truth is that is was 7 hours of hell.
For 6 of the 7 hours home, mom did nothing but accuse and complain and yell and call us names. I have never heard my mom refer to my dad as a 'bastard' until today. Me, well, the woman has called me a bitch too many times to count but never as much as she did today and she even threw the f word in once or twice for good measure. I knew this is how it would be. I knew that nothing is ever good enough for mom because that is just how she is as a person and even with dementia that doesn't change. I knew she would complain and I tried to prepare myself for it. If this had been before the dementia, when anyone could still reason with mom and when she was still able to see the sense of things and situations, then today would have pleasant. But mom has dementia and trying to reason or make a dementia person understand anything is an exercise in futility.
It started in the car. Mom bitched at dad for selling his van. He sold that van 4 years ago. Then when we got to the house she insisted she could get out of the car on her own and got very aggressive with us when we tried to help. So dad and I let her try on her own and when she couldn't do and fell back into the car seat (thankfully not on her ass on the cement floor) then she called us useless as tits on a bull. Then she complained about the ramp dad had built so that she can get into the house. Then when we got her into the house she complained that the floor was dirty (it wasn't). When she sat in her chair then she complained that the windows weren't clean enough and so I reminded her that there is no sense in cleaning windows in winter. So she called me lazy and that I am just looking for excuses not to do any housework. She then demanded that I clean them, inside and out and when I refused she called me a bitch, that was the first 'bitch' of many.
I told dad to get the phone so mom could call some friends and family and it would distract her mind and perhaps change her mood. She talked with her dear friend Rosalie and it seemed to brighten her mood slightly. For the first time in awhile I actually heard mom admit that she has just a little bit of dementia. Then she wanted to call Sylvia Slavin and once again I had to remind her that Sylvia passed away 3 years ago. She pretended to remember. Then we tried my brother Doug and he wasn't home so that pissed her off and I don't know why or what goes on in mom's demented mind but it was my fault that he wasn't answering his phone. Then we called Aunt Clara, who thank God answered. Again, they had a 'nice' conversation and mom asked about her late sister Jackie and about the funeral and then she was crying and sad. Aunt Clara knew how to change the conversation and they started talking about things and mom asked that Clara and Reg help to get her out of the home that's she in because she hates it. Then she wanted to talk to David because she insisted that she hasn't spoken to him in years but when we called there was no answer so we called her brother Gene but because she was pissed off about not being able to speak with David, she didn't really want to talk to Gene for long and the conversation was short.
After lunch, where she complained that the tomato and cheese sandwich was too wet???? we thought we would take mom for a little drive. On the walk down the ramp, the same ramp she complained about an hour earlier, I tried to explain why dad built it the way he did, that the little ledges are so the walker wheels wouldn't run away on her when she leaves the house. Then she complained that I'm a know it all.
About 10 minutes into the drive I wanted to throw myself out the door of the moving car. I swear mom seized the opportunity to berate me for everything from the color of my hair to the way I breathe and everything in between. Thankfully my dad could see that the drive wasn't going to work so after half an hour, we returned home where she again complained about the ramp. I didn't bother explaining this time.
Mom wanted to tour the house to see if 'Mary' was around. I actually said a prayer at that point for patience, and lots of it. So around the house we went. Mom complained about the pictures on the walls, the state of the oven (it's spotless), the sheets on the bed, and then into the bathroom we went. She opened up her makeup drawer and all the makeup except her lipsticks were there. She complained about that and then demanded that I tidy of the drawer. I refused and again I was a bitch. Then to her closet where she insisted that dad had given away all of her clothes and even though all of her clothes were right in front of her, hanging and folded the same way they have been for years, she still insisted her clothes were gone and that these clothes were 'Mary's'. I sat her on the bed and ran down stairs and grabbed my computer where I opened all the pictures I have stored of mom over the years and back upstairs I went. I showed her pictures of her wearing the clothes that were hanging in the closet. The evidence was right there in front of her to see. I showed her a picture of her and Dylan and her grad and the dress she was wearing and I pulled the dress out of the closet. I showed her a picture of her and Ryley in Kamloops at his guitar recital and the shirt and capris she was wearing in the picture and then I pulled the same clothes from her closet and showed her the clothes. If mom didn't have dementia she would believed me instead I was a 'fucking evil bitch' because I am going to great lengths to cover up dad's affair with 'Mary'. In mom's mind I had gone to Calgary and taken the photos with me and bought clothes to match the pictures and then hung them in her closet. Wow!!!
When she wanted to take a nap, I was glad, at least an hour of peace. She wanted to use the toilet first so I helped her on the biffy. The depends she was wearing was full and mom asked me to get a new one, I did. I then tried to help remove the old one so I bent down to pull it off and she pushed me over and screamed at me "I CAN DO IT MYSELF". That is the first time mom has ever gotten physical with me and I was shocked. It's a good thing I stayed because even while sitting on the toilet and trying to put on the clean depends, she fell forward and I was there to catch her. Then she wanted my help. I then helped her to bed where she complained some more about too much light and then too little light and then too loud and then finally she fell asleep.
For an hour there was peace, no bitching, no complaining, no criticism, no anger, no nagging and no accusations, just one hour of peace. It was nice and I watched the clouds slip away and the blue sky peer through and I cried. I cried out of frustration. It doesn't matter how times I tell myself "Leis, it's just the dementia talking" it still hurts. It doesn't matter how many other caregivers, spouses, children or workers are going through the same thing, it still hurts. It doesn't matter how many words of praise I am given, it still hurts. Dementia hurts everyone. This is a pain I have never known and I hope to never know again. This is the life of the dementia caregiver.
On the plus side, mom was able to come home and although this visit wasn't what we had hoped for, I hope other visits will be better. When spring comes we can take mom on day trips to Canmore and for visits with old friends and for pie in Bragg Creek and perhaps the zoo or a show or a play. I still look forward to more time with mom and all the time I can get, good or bad. It's bittersweet but then I always liked dark chocolate.
Friday 22 February 2013
The Dementia Diary: Awakening
The Dementia Diary: Awakening: Someone recently compared mom and our circumstance to the movie 'Awakenings'. It's a true story about Dr. Oliver Sacks who discovered that ...
Awakening
Someone recently compared mom and our circumstance to the movie 'Awakenings'. It's a true story about Dr. Oliver Sacks who discovered that treating patients who suffered from Encephalitic Lethargia with L-Dopa, brought them out of the catatonia they were in. It starred Robin Williams and Robert De Niro and in the movie, patients in a facility who were literally zombies are given a new medication and they awake and enjoy life again. I can see the reverse comparison as mom was taken off some of her medications, including something similar to L-Dopa, and awoke from a zombie like stupor to come alive again. In the movie, the patients eventually experience some adverse reactions to medications and are taken off of them and unfortunately they return to the zombie like state. This will also happen to mom, over time but not because of medication, simply because that is the progression of dementia.
In the movie, while the patients are awake, they get to experience life again. That is what we are planning to do with mom. As she continues to gain her strength back we intend to get her out more and bring her home for short day visits. It doesn't really seem like much but going out for Chinese food next week will be exciting for all of us and we look forward to it and we look forward to other day trips out again. So, to get mom ready, my dad is walking with mom everyday and has hired a private physiotherapist to work with her twice a week.
With the awakening though also comes other concerns. Mom forgets that she doesn't walk that well and often tries to get herself out of bed. For that reason she now has a bed sensor in her bed and gymnastics bumpers around her bed so if she should fall, the injury would hopefully be minor and the workers would be able to respond quickly. She is still very unsteady, even with the walker and in the back of my mind is a fall and a broken hip. I have known so many elderly people over the years and it seems to me that none of them ever bounced back from a broken hip. Also in the back of my mind is that she will get stronger and more stable on her feet and one of these days might just get it in her head to bolt out the door. The facility that mom is in uses sensors for residents that tend to wander. As mom hasn't wandered because she couldn't, a sensor wasn't needed. I'm thinking this will be next on the list of things to get for mom.
Also with the awakening is the denial. Mom argues daily with anyone who will listen and insist that she doesn't have dementia. When she compares herself to some of the other dementia patients around her, she has a very convincing argument. She has forgotten the past years and the past 6 months and can't remember that only 5 minutes earlier she was arguing with the same person about the same thing. There seems no point in trying to convince her otherwise so I just listen over and over and over again and then go to the washroom or take her outside or get her a drink of juice or read a magazine with her. I try anything to change her thought pattern because there is no reasoning with her. I have tried to present to her, scientific-like evidence that she can't deny and I try to help her understand that dementia has over 200 different types and sub-types and everyone is different. It's pointless so I nod and listen and most of the time within hours she has become more dementia like and not very responsive to anything. I find myself, at times, and I hate to say this, enjoying the downward fluctuation because there is no argument, no aggression, no anger and it is really almost peaceful.
I wish, I truly wish that we could do what mom wants. She wants to go home and live and home. On some days I think we can and I plan in my head the ways in which we could manage. I get happy and determined and I look up the cost of equipment and private nurses and I haven't done this just once either. But then I have too have to remember the past years and months and remind myself that with Lewy Body dementia the fluctuations will eventually be lesser in degree and the physical symptoms will gradually return and worsen and she will return to her catatonic state of being. So I fluctuate and have to bring myself back down to reality at least a couple times a week. It's wishful thinking, I know, but in those moments I day dream of things we could do again and places we could go again. Then in my awakening I am reminded that they are just dreams and I look over to my mom and in her sun downing moments I watch her stare at the wall, not even aware that I am there.
In the movie, while the patients are awake, they get to experience life again. That is what we are planning to do with mom. As she continues to gain her strength back we intend to get her out more and bring her home for short day visits. It doesn't really seem like much but going out for Chinese food next week will be exciting for all of us and we look forward to it and we look forward to other day trips out again. So, to get mom ready, my dad is walking with mom everyday and has hired a private physiotherapist to work with her twice a week.
With the awakening though also comes other concerns. Mom forgets that she doesn't walk that well and often tries to get herself out of bed. For that reason she now has a bed sensor in her bed and gymnastics bumpers around her bed so if she should fall, the injury would hopefully be minor and the workers would be able to respond quickly. She is still very unsteady, even with the walker and in the back of my mind is a fall and a broken hip. I have known so many elderly people over the years and it seems to me that none of them ever bounced back from a broken hip. Also in the back of my mind is that she will get stronger and more stable on her feet and one of these days might just get it in her head to bolt out the door. The facility that mom is in uses sensors for residents that tend to wander. As mom hasn't wandered because she couldn't, a sensor wasn't needed. I'm thinking this will be next on the list of things to get for mom.
Also with the awakening is the denial. Mom argues daily with anyone who will listen and insist that she doesn't have dementia. When she compares herself to some of the other dementia patients around her, she has a very convincing argument. She has forgotten the past years and the past 6 months and can't remember that only 5 minutes earlier she was arguing with the same person about the same thing. There seems no point in trying to convince her otherwise so I just listen over and over and over again and then go to the washroom or take her outside or get her a drink of juice or read a magazine with her. I try anything to change her thought pattern because there is no reasoning with her. I have tried to present to her, scientific-like evidence that she can't deny and I try to help her understand that dementia has over 200 different types and sub-types and everyone is different. It's pointless so I nod and listen and most of the time within hours she has become more dementia like and not very responsive to anything. I find myself, at times, and I hate to say this, enjoying the downward fluctuation because there is no argument, no aggression, no anger and it is really almost peaceful.
I wish, I truly wish that we could do what mom wants. She wants to go home and live and home. On some days I think we can and I plan in my head the ways in which we could manage. I get happy and determined and I look up the cost of equipment and private nurses and I haven't done this just once either. But then I have too have to remember the past years and months and remind myself that with Lewy Body dementia the fluctuations will eventually be lesser in degree and the physical symptoms will gradually return and worsen and she will return to her catatonic state of being. So I fluctuate and have to bring myself back down to reality at least a couple times a week. It's wishful thinking, I know, but in those moments I day dream of things we could do again and places we could go again. Then in my awakening I am reminded that they are just dreams and I look over to my mom and in her sun downing moments I watch her stare at the wall, not even aware that I am there.
Wednesday 13 February 2013
The Dementia Diary: Miracles DO happen
The Dementia Diary: Miracles DO happen: When I moved home in late summer, I really didn't have any idea of what was ahead. I knew my mom was in a bad way. I knew she couldn't use...
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