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...
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 her hands, or walk, or eat without help and she rarely talked. I knew that my dad needed me. I knew that I had come home for a reason but I wasn't sure what the end result would be. I didn't feel lost or without a purpose or anything like that, I simply wasn't sure what lay ahead on my path.
I can remember vividly the first time I saw mom. Although I was aware of all that had slipped away from her I was not prepared for what I saw when my dad pulled back the curtain and said "Mother, look who's here".
I remember my knees buckled and my breath stopped. I remember being overwhelmed with a great sadness because what lay in the bed before me was a sickly, old woman who was dieing and it was not my mother. I cried a lot in those first few days.
I then accepted the fact that dementia was killing my mother and that I had been directed home to be there for her and with her during her final days or weeks or months. None of us thought that mom would even make it to x-mas and we began planning accordingly. I wrote an outline for the obituary. I dug through her stuff and found her address book. Dad and I decided that when the time came that a service at the Sacred Heart in Canmore would be best.
Those first weeks were very hard. I spent as much time as I could with mom and took her to everything that we could go to. I helped her to eat and would read to her and walk around the facility to look at the fish and the birds and even just to sit in the quiet of the chapel sometimes. Mom didn't talk much then but you could see in her eyes when she was angered or bitter and when she was sad or scared.
Slowly but surely, as the medications got out of her system, things came back. I really didn't notice it until near the end of November when she I wasn't feeding her ice cream quick enough and I watched as she grabbed a near by spoon and attempted to get a spoonful herself. I went the next day to the Occupational therapist and asked that he start working with mom as she was trying to use her hands again. He did.
Gradually, more and more of mom came back. She talked, she got demanding, she remembered, she smiled and our death watch ended. We still didn't know what to expect and we let mom guide us and when she set goals, well my dad and I would help her in anyway to achieve those goals. One of those goals was to walk again. We had discussed it with the therapists who said "It is possible but unlikely". It wasn't that mom couldn't, it was the simple fact that her muscles had atrophied and perhaps she simply would not have the strength to accomplish such a feat. I am so overwhelmingly happy to say, that this afternoon I witnessed a miracle. My mother walked for the first time in almost a year.
Sometimes miracles do happen and sometimes to make a miracle, you have to help it along.
I can remember vividly the first time I saw mom. Although I was aware of all that had slipped away from her I was not prepared for what I saw when my dad pulled back the curtain and said "Mother, look who's here".
I remember my knees buckled and my breath stopped. I remember being overwhelmed with a great sadness because what lay in the bed before me was a sickly, old woman who was dieing and it was not my mother. I cried a lot in those first few days.
I then accepted the fact that dementia was killing my mother and that I had been directed home to be there for her and with her during her final days or weeks or months. None of us thought that mom would even make it to x-mas and we began planning accordingly. I wrote an outline for the obituary. I dug through her stuff and found her address book. Dad and I decided that when the time came that a service at the Sacred Heart in Canmore would be best.
Those first weeks were very hard. I spent as much time as I could with mom and took her to everything that we could go to. I helped her to eat and would read to her and walk around the facility to look at the fish and the birds and even just to sit in the quiet of the chapel sometimes. Mom didn't talk much then but you could see in her eyes when she was angered or bitter and when she was sad or scared.
Slowly but surely, as the medications got out of her system, things came back. I really didn't notice it until near the end of November when she I wasn't feeding her ice cream quick enough and I watched as she grabbed a near by spoon and attempted to get a spoonful herself. I went the next day to the Occupational therapist and asked that he start working with mom as she was trying to use her hands again. He did.
Gradually, more and more of mom came back. She talked, she got demanding, she remembered, she smiled and our death watch ended. We still didn't know what to expect and we let mom guide us and when she set goals, well my dad and I would help her in anyway to achieve those goals. One of those goals was to walk again. We had discussed it with the therapists who said "It is possible but unlikely". It wasn't that mom couldn't, it was the simple fact that her muscles had atrophied and perhaps she simply would not have the strength to accomplish such a feat. I am so overwhelmingly happy to say, that this afternoon I witnessed a miracle. My mother walked for the first time in almost a year.
Sometimes miracles do happen and sometimes to make a miracle, you have to help it along.
Sunday 10 February 2013
The Dementia Diary: There's something about Mary
The Dementia Diary: There's something about Mary: There are so many changes that are very noticeable now that mom is more cognisant. I love that at times we can actually converse. I love t...
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