As the new year begins, I find myself not with feelings of anticipation, but of dread. My dad has always been the person I most look up to. I've asked him advice on home improvement, managing people, parenting. I'd like to ask him relationship advice right now. I've mentioned before the one fight I heard my parents have when I was about in 6th grade. My Mom was always the social butterfly, needing to be with lots of other people, liking to be the center of attention. My dad, on the other hand, was quiet and a true introvert. He finds himself when he is working in his shop. Even though I'm over 50 years old, I'd like to call and talk with him about how you make such a situation work, for my own life. They obviously did.
But I can't bring myself to burden him with one more thing. Already I miss being able to go to him. The Christmas gift deal was a real eye opener that he is just making it with what he already has on his plate. I remember when my maternal grandfather died. I thought to myself at the time, how hard that must be for my mom to now be the oldest generation. The source of wisdom and strength, who other people must rely on. I don't want to be the oldest generation. I want my dad to be there. I've known for awhile that mom was not in that position any more because of the dementia. I need to be a source of strength now for my dad, not the other way around.
One of my earliest memories was when I had a bad dream one night. It was less than 5 years old because I remember the bedroom I had at the time. My dad came to see what was the matter. I told him I had a dream that he had died. He reassured me that it would be a long time before that would happen. I still hope that is a long time in coming. But already I miss my dad. I'm not equipped to be the oldest generation. I don't want to be the oldest generation yet.
Tuesday, December 31, 2013
Sunday, December 29, 2013
Great Information
I was lacking 3 continuing education hours for my assisted living administrators license renewal. So Friday afternoon, I came home early and got on the computer to do an online class through Easy CEU.com. What a great resource! There were 3 different classes by Jolene Brackey. I've mentioned her before as the author of the book "Creating Moments of Joy". I have never been able to hear her speak in person, so the online video module was very inspiring. I chose to do the class called "Creating a Safe Haven". It was a class designed for people that are thinking about building or creating a Memory care facility. But so many of the tips she mentioned have application for those caring for someone at home as well. Little things like dark colors are seen as holes, especially in flooring. If you have walls painted a light color in the bathroom, the fixtures blend in. Way too many ideas for me to relate here, but it is a reminder about the many resources that are available now.
As a facility person, her insights do seem to point out that there are many things you can do in a facility that you can't do at home. Certainly there is the social aspect of a facility. She says that folks with dementia do better in a setting with others with dementia. I can see that as the disease progresses. But in my experience, early in the disease, they function well with other seniors that have more physical, medical issues. I heartily agree that a small setting is best for those with dementia. The large, hotel type setting of many assisted living and independent living communities would be overwhelming. Creating a space to walk (some label it as wandering), both outside and indoors certainly is easier to create in a facility setting. Having lots of pockets, cabinets, drawers of "stuff" to keep people engaged would seem to be more easily done in a facility that at home. The idea of camouflaging areas you don't want them to use would seem to be easier to do in a facility as well.
She references a couple other resources as well. Elizabeth Brawley has written a book (quite expensive) about designing for dementia. I'm pretty sure my boss bought that when they were looking into creating a memory care building. She also suggests reading the book "My Journey into Alzheimer's Disease" by Robert Davis. If I wasn't trying to put myself on a book diet, I would have that in my cart at Amazon.com already.
It is refreshing to hear someone with such insight and a love for people with dementia give ideas. It is inspiring for me as well to try to share some of those ideas with the support group. We all need some refreshment at times. How thankful I am for a boss that supports my learning. I just hope it will help me to help others in their own journey.
As a facility person, her insights do seem to point out that there are many things you can do in a facility that you can't do at home. Certainly there is the social aspect of a facility. She says that folks with dementia do better in a setting with others with dementia. I can see that as the disease progresses. But in my experience, early in the disease, they function well with other seniors that have more physical, medical issues. I heartily agree that a small setting is best for those with dementia. The large, hotel type setting of many assisted living and independent living communities would be overwhelming. Creating a space to walk (some label it as wandering), both outside and indoors certainly is easier to create in a facility setting. Having lots of pockets, cabinets, drawers of "stuff" to keep people engaged would seem to be more easily done in a facility that at home. The idea of camouflaging areas you don't want them to use would seem to be easier to do in a facility as well.
She references a couple other resources as well. Elizabeth Brawley has written a book (quite expensive) about designing for dementia. I'm pretty sure my boss bought that when they were looking into creating a memory care building. She also suggests reading the book "My Journey into Alzheimer's Disease" by Robert Davis. If I wasn't trying to put myself on a book diet, I would have that in my cart at Amazon.com already.
It is refreshing to hear someone with such insight and a love for people with dementia give ideas. It is inspiring for me as well to try to share some of those ideas with the support group. We all need some refreshment at times. How thankful I am for a boss that supports my learning. I just hope it will help me to help others in their own journey.
Saturday, December 21, 2013
A Measure of the Progression
I had a dramatic example this week of just how different things are now with my mother's memory loss. She was not Martha Stewart when we were young, but close when it came to Christmas. All through the year she would shop to find just the right present for everyone. It might not cost a lot of money, but it was perfect for that person. She taught us that it really is the thought that counts. Giving money was forbidden. That showed a lack of personal involvement and care for the person. Presents were wrapped with coordinating paper and bows and every year there was an ornament on one package that went with the theme and was collectable. One of my favorite traditions from when I was a child was the purchase or creation of one ornament every year for each one of the kids that symbolized something for that year. One year, it was a piano. The year my oldest turned 16, he got a matchbox car ornament. Then when each of the 3 of us, and now my own children, leave home, we took our special ornaments with us to start our own homes.
So I was quite surprised with the package I received in the mail this week. I knew they were working on our Christmas package because Mom told me so in our weekly phone call last Sunday. I'm pretty sure our package to them arrived a day or two before which is what spurred them on. Forgetting special events was one of the signs when I knew something was wrong with Mom (she forgot the birthday of one of her 2 grandchildren, yet remembered my husband's birthday 2 days before). This year, I called on my youngest brother's birthday to give a gentle reminder. I think Dad just has too much on his plate and he had forgotten. So I wasn't surprised about the kind of last minute aspect of the gifts (which was also unusual). Then I opened the package. My parents have always been bad about using boxes that are really not big enough and just covering them in so much tape, they make it through. But when I opened the outer box, I found a box of Hickory Farm candy that came ready wrapped with a bow. Then there was the box with a electric coffee mug for your car. It was not wrapped and had a gift tag slapped on it. Now lest you think I am disappointed by the gift, I honestly could care less about getting any kind of present. It was just an example of how different things are now.
When I got dressed for work yesterday morning I put on a top that I realized was the last personalized gift I will ever get from my mother. I can't remember if it was last year or the year before. Then last night I talked to my middle brother. Guess what he got for Christmas? He got a box of Hickory Farms and a car plug in coffee mug. Again, I don't care about the present itself. But it says to me that Dad really has too much to do. And I don't think he realizes it's not going to be short term and its not going to get better. No wonder people get depressed at the holidays.
So I was quite surprised with the package I received in the mail this week. I knew they were working on our Christmas package because Mom told me so in our weekly phone call last Sunday. I'm pretty sure our package to them arrived a day or two before which is what spurred them on. Forgetting special events was one of the signs when I knew something was wrong with Mom (she forgot the birthday of one of her 2 grandchildren, yet remembered my husband's birthday 2 days before). This year, I called on my youngest brother's birthday to give a gentle reminder. I think Dad just has too much on his plate and he had forgotten. So I wasn't surprised about the kind of last minute aspect of the gifts (which was also unusual). Then I opened the package. My parents have always been bad about using boxes that are really not big enough and just covering them in so much tape, they make it through. But when I opened the outer box, I found a box of Hickory Farm candy that came ready wrapped with a bow. Then there was the box with a electric coffee mug for your car. It was not wrapped and had a gift tag slapped on it. Now lest you think I am disappointed by the gift, I honestly could care less about getting any kind of present. It was just an example of how different things are now.
When I got dressed for work yesterday morning I put on a top that I realized was the last personalized gift I will ever get from my mother. I can't remember if it was last year or the year before. Then last night I talked to my middle brother. Guess what he got for Christmas? He got a box of Hickory Farms and a car plug in coffee mug. Again, I don't care about the present itself. But it says to me that Dad really has too much to do. And I don't think he realizes it's not going to be short term and its not going to get better. No wonder people get depressed at the holidays.
Sunday, December 15, 2013
Sexuality and Dementia
I have been dealing with a new and difficult situation at work. I have a male resident with early dementia who continues to suffer with grief and the loss of his wife 5 or 6 years ago. In my non-clinical estimation, he is looking to fill the hole of his grief with another relationship with a woman. His history from before he moved in with us seems to confirm my theory. He has focused on one of my female residents who also has early to moderate dementia. So even if she were interested in returning the emotion, the competency to make such a decision is questionable at best.
The male resident continues to pursue the female resident and just will not leave her alone even after multiple discussions with he and his family. I had no choice but to give him notice that he must move out. This situation has been such a challenge in many ways. No child wants to think about their parents and their sexual needs or even admit they exist. But when you look at Maslow's hierarchy of needs, those needs for love are very basic. Not to mention as adults with long time life experience, expressing these needs are something that resides in the long term memory part of the brain. The reasoning and decision making part of the brain is compromised early in the diagnosis. It doesn't help that there are so many stereotypes to counter in this kind of situation.
I truly believe and have talked with the man's family that this behavior does not make him a dirty old man. I really believe his decision making abilities are so compromised and his emotional need for love so great that he really can't help himself. Again the difficulty comes with a dementia diagnosis because you look at the individual and they don't appear to have any physical symptoms. It is the behavioral symptoms that let you know there is a problem and it's hard to separate the behavior from the person. His family is embarrassed and upset by his behavior. In part, I'm sure my giving notice seems like a punishment for his behavior, but there really is no other way to ensure my female resident's safety. I also think if it weren't this female, it would be another because his need is so strong.
The family of the female resident doesn't get off easy either. They also see the behavior and wonder if their mother had been in some way leading the gentleman on or if in her younger days she was a "loose woman". No matter what the specific situations, it is so difficult for families as the person they once knew becomes farther and farther away and they are left with someone they don't recognize any more.
Education of staff who are minimally trained is another hurdle. I am fortunate that most of my staff have been with me for several years and are pretty well experienced with the symptoms of dementia and what happens to people as they decline when it comes to memory and bodily functions. The aspect of sexuality seems to set everyone back a step or two as cultural expectations and stereotypes come to the forefront in situations we don't experience very often and a situation where as humans we feel the need to protect the person we see as more vulnerable.
As with every situation I experience at work, I now look at it from how I would see things as a family member. I know my mother enjoys attention. I still remember one particularly traumatic situation when I was a child and my parents had a fight about my mother flirting with other men at a party. Knowing how basic the need for love is and knowing my mother, I have no doubt if she were in a similar situation, she would enjoy the attention. Does putting myself in the place of my family's make me better at my job or does it make me less objective and compromise my ability to do my job? I know God has placed me in this position to care for his children. I just pray He will give me the insight to do what is right by my residents and their families.
The male resident continues to pursue the female resident and just will not leave her alone even after multiple discussions with he and his family. I had no choice but to give him notice that he must move out. This situation has been such a challenge in many ways. No child wants to think about their parents and their sexual needs or even admit they exist. But when you look at Maslow's hierarchy of needs, those needs for love are very basic. Not to mention as adults with long time life experience, expressing these needs are something that resides in the long term memory part of the brain. The reasoning and decision making part of the brain is compromised early in the diagnosis. It doesn't help that there are so many stereotypes to counter in this kind of situation.
I truly believe and have talked with the man's family that this behavior does not make him a dirty old man. I really believe his decision making abilities are so compromised and his emotional need for love so great that he really can't help himself. Again the difficulty comes with a dementia diagnosis because you look at the individual and they don't appear to have any physical symptoms. It is the behavioral symptoms that let you know there is a problem and it's hard to separate the behavior from the person. His family is embarrassed and upset by his behavior. In part, I'm sure my giving notice seems like a punishment for his behavior, but there really is no other way to ensure my female resident's safety. I also think if it weren't this female, it would be another because his need is so strong.
The family of the female resident doesn't get off easy either. They also see the behavior and wonder if their mother had been in some way leading the gentleman on or if in her younger days she was a "loose woman". No matter what the specific situations, it is so difficult for families as the person they once knew becomes farther and farther away and they are left with someone they don't recognize any more.
Education of staff who are minimally trained is another hurdle. I am fortunate that most of my staff have been with me for several years and are pretty well experienced with the symptoms of dementia and what happens to people as they decline when it comes to memory and bodily functions. The aspect of sexuality seems to set everyone back a step or two as cultural expectations and stereotypes come to the forefront in situations we don't experience very often and a situation where as humans we feel the need to protect the person we see as more vulnerable.
As with every situation I experience at work, I now look at it from how I would see things as a family member. I know my mother enjoys attention. I still remember one particularly traumatic situation when I was a child and my parents had a fight about my mother flirting with other men at a party. Knowing how basic the need for love is and knowing my mother, I have no doubt if she were in a similar situation, she would enjoy the attention. Does putting myself in the place of my family's make me better at my job or does it make me less objective and compromise my ability to do my job? I know God has placed me in this position to care for his children. I just pray He will give me the insight to do what is right by my residents and their families.
Saturday, November 30, 2013
Finding the Balance between Safety and Self Esteem
It is 10 am the morning after Thanksgiving. Although I worked Thanksgiving day, there is still a lot to catch up on after a day off in the middle of the week. Not only that, but I have a water heater out on one hall. And then my cell phone rings. It is mom. I can tell something has happened. That is usually what precipitates a call during the middle of the day in the middle of the week. She starts talking about how she is not an imbecile and people keep treating her like she is. I have the maintenance supervisor standing at my door. What a great deal to be a working woman. I used to feel torn between my job and taking care of my children. Now I feel torn between my job and being there for my mother. I think I've mentioned before, but my boss is really great about me talking to my mom when she calls. My boss is one step ahead of me in every respect, mothering, career and having a mother with dementia. Her mother has now progressed to needing to be in a skilled facility. I know she would love for her mother to still be able to pick up the phone and call. So it's not that pressure. Yet there is the maintenance supervisor and hot water is pretty important to my residents. I have to hand up and call again. Yet I know I may never really figure out what happened if I hang up now. But hand up, I do, and call back again just before lunch. I get the answering machine.
On my way home from work, I call back. Whatever happened this morning is no longer pressing. Reading between the lines, I can figure out that dad has gotten frustrated about something. She does not recognize any kind of impairment at this time. She talks about "the stroke". I usually focus on that as well because it is concrete subject she can understand. I know there were symptoms of memory loss 2 years before the stroke. But at this point I don't think it really matters what we call it. Her brain has problems. She can understand a stroke impairs that brain. We have the same conversations again, I had as good a job as your dad and made as much money, the doctor said I shouldn't drive but I still have my license, people don't talk to me now, they only talk to your dad.
I have to admit, even though I deal with this 8 hours a day at work, it takes a lot of deep breathing to listen over and over again with my mother. I really don't know how caregivers in the home do it 24 hours a day, 7 days a week. I am frequently coaching staff on how to make sure residents have their needs met, yet being respectful and treating them like adults. I also know my dad and patience has never really been his strong suit. Combine that with my mother's long standing need to be the center of attention and now she can't remember that just 5 minutes ago, he was there with her doing whatever. And then there is her long standing personality trait of obsessing about things. The memory loss has just compounded that trait (and I am finding I have inherited that trait myself).
I hope all of this will make me a better facilitator of the Caregiver Support Group. Although I am the "professional", I am realizing more than ever that I really don't have all the answers. Will that be discouraging for caregivers at the group? I hope not. How do you mitigate the feelings of inferiority because of someone else having to make decisions and do the daily tasks? I don't know. I do know my dad has to be able to work in his workshop in order to deal with his stress. I'm glad my mom is at a place where she is ok in the house by herself. This is sometimes more discouraging for me than encouraging as I realize I have many more questions than answers. Which brings me back to the whole point of this blog. No matter how many years of professional experience, when it is personal, it is a whole new ball game.
On my way home from work, I call back. Whatever happened this morning is no longer pressing. Reading between the lines, I can figure out that dad has gotten frustrated about something. She does not recognize any kind of impairment at this time. She talks about "the stroke". I usually focus on that as well because it is concrete subject she can understand. I know there were symptoms of memory loss 2 years before the stroke. But at this point I don't think it really matters what we call it. Her brain has problems. She can understand a stroke impairs that brain. We have the same conversations again, I had as good a job as your dad and made as much money, the doctor said I shouldn't drive but I still have my license, people don't talk to me now, they only talk to your dad.
I have to admit, even though I deal with this 8 hours a day at work, it takes a lot of deep breathing to listen over and over again with my mother. I really don't know how caregivers in the home do it 24 hours a day, 7 days a week. I am frequently coaching staff on how to make sure residents have their needs met, yet being respectful and treating them like adults. I also know my dad and patience has never really been his strong suit. Combine that with my mother's long standing need to be the center of attention and now she can't remember that just 5 minutes ago, he was there with her doing whatever. And then there is her long standing personality trait of obsessing about things. The memory loss has just compounded that trait (and I am finding I have inherited that trait myself).
I hope all of this will make me a better facilitator of the Caregiver Support Group. Although I am the "professional", I am realizing more than ever that I really don't have all the answers. Will that be discouraging for caregivers at the group? I hope not. How do you mitigate the feelings of inferiority because of someone else having to make decisions and do the daily tasks? I don't know. I do know my dad has to be able to work in his workshop in order to deal with his stress. I'm glad my mom is at a place where she is ok in the house by herself. This is sometimes more discouraging for me than encouraging as I realize I have many more questions than answers. Which brings me back to the whole point of this blog. No matter how many years of professional experience, when it is personal, it is a whole new ball game.
Sunday, November 17, 2013
Unfortunate stigma of psychiatrists
I find over and over again how helpful a good psychiatrist can be when trying to manage some of the negative behaviors that can show up when someone develops dementia. I worked in geriatric mental health for 7 years and found that all these years later, there continues to be the stigma attached to anything mental health. So many still believe anything mental health related is a matter of will power, especially those of the older generation who are now the prime age for developing dementia.
One of my residents with early dementia has been plagued by an underlying low level of agitation all the time. Not only does this disrupt his relationships with residents and staff at the assisted living and his family members, but it has got to be distressing for him as well. Fortunately, he has a wonderful family who is willing to seek out whatever help they can find. Their situation reminds me how important personal choice and relationship is in any physician relationship. They did not click with my favorite geriatric psychiatrist. But they did try a couple and find one that both the resident and family members feel a better connection with. I know with my mother, she was okay with the psychiatrist, although he made what she felt like was a criticizing comment. My dad, on the other hand, felt like he was arrogant. In my parents case, the psychiatrist made medication recommendations which the primary care physician not prescribes and follows. Given their feelings about him and their positive relationship with the primary care physician, this is probably the best case scenario for them. On the other hand, I have seen first hand a number of primary care physicians who are not specialists with psychiatric medications, much less the issues that effect the elderly, who really just blunder about with medications. A specialist would be much more effective.
Not that I advocate "drugging" people up. The most recent research verifies that the best approaches to manage typical dementia behaviors are lifestyle and environmental changes. I think anyone would agree that non medication changes are always the best first course. However, I have also seen how effective a simple mood stabilizing medication can be in giving people a better quality of life.
One of the very positive outcomes I have seen with the Caregiver Support Group is the advocacy by family members for seeking out a psychiatrist for the treatment team. A big thank you for the psychiatrists out there who seek to stay at the forefront of research on medications for seniors and seniors with Alzheimer's and dementia. Even after all these years of trying to destigmatize mental health, I guess family members with positive experiences are still the best support for other caregivers struggling to find the best quality of life for their loved ones.
One of my residents with early dementia has been plagued by an underlying low level of agitation all the time. Not only does this disrupt his relationships with residents and staff at the assisted living and his family members, but it has got to be distressing for him as well. Fortunately, he has a wonderful family who is willing to seek out whatever help they can find. Their situation reminds me how important personal choice and relationship is in any physician relationship. They did not click with my favorite geriatric psychiatrist. But they did try a couple and find one that both the resident and family members feel a better connection with. I know with my mother, she was okay with the psychiatrist, although he made what she felt like was a criticizing comment. My dad, on the other hand, felt like he was arrogant. In my parents case, the psychiatrist made medication recommendations which the primary care physician not prescribes and follows. Given their feelings about him and their positive relationship with the primary care physician, this is probably the best case scenario for them. On the other hand, I have seen first hand a number of primary care physicians who are not specialists with psychiatric medications, much less the issues that effect the elderly, who really just blunder about with medications. A specialist would be much more effective.
Not that I advocate "drugging" people up. The most recent research verifies that the best approaches to manage typical dementia behaviors are lifestyle and environmental changes. I think anyone would agree that non medication changes are always the best first course. However, I have also seen how effective a simple mood stabilizing medication can be in giving people a better quality of life.
One of the very positive outcomes I have seen with the Caregiver Support Group is the advocacy by family members for seeking out a psychiatrist for the treatment team. A big thank you for the psychiatrists out there who seek to stay at the forefront of research on medications for seniors and seniors with Alzheimer's and dementia. Even after all these years of trying to destigmatize mental health, I guess family members with positive experiences are still the best support for other caregivers struggling to find the best quality of life for their loved ones.
Sunday, November 10, 2013
Should- the most destructive word in the English language
I have frequently felt "beat up" by the word "should" in my adult life. I should do more for my children. I should put in more time at work. I should put aside my own interests to support those of my husband, my children, my friends. I'm sure I will continue to wrestle with realistic and unrealistic expectations of myself. But I hate to see what that word can do to others.
I know my dad is not considering moving because he thinks he should be able to provide 100% of the care for my mom for ever. And I know he feels that he shouldn't burden me or my brothers and our lives to help. It doesn't matter that we would gladly be willing to be a part of the caregiving team. I don't know that any of us will ever be able to make him see that. That expectation is so firmly entrenched in his mind.
Then this week that word attacked again. We had our monthly caregiver support group meeting. One of the caregivers that is a role model for caregivers everywhere revealed her "should". This woman has been caring for her husband since his diagnosis in 2007. She does get sitters to give her 2 days off during the week to run errands and have time with her friends. But other than those limited hours, she is providing 100% of his care 24 hours a day. Not only that but with an unbelievable attitude. So at the support group meeting she says she feels like she should still be taking her husband to church. She doesn't because the effort involved to get him ready and there has become monumental. And again, she could be a role model for other caregivers, yet she beats herself up because she thinks she should still be doing more.
Maybe this has given me an idea for the next caregiver support group. Maybe we should talk about all those "shoulds" that are so damaging to people. It is one thing to deal with it myself. But it truly breaks my heart to see someone who could be caregiver of the year, still feel they aren't doing enough. I pray that in the next couple weeks, God will reveal what I can do to help caregiver's not be so hard on themselves.
I know my dad is not considering moving because he thinks he should be able to provide 100% of the care for my mom for ever. And I know he feels that he shouldn't burden me or my brothers and our lives to help. It doesn't matter that we would gladly be willing to be a part of the caregiving team. I don't know that any of us will ever be able to make him see that. That expectation is so firmly entrenched in his mind.
Then this week that word attacked again. We had our monthly caregiver support group meeting. One of the caregivers that is a role model for caregivers everywhere revealed her "should". This woman has been caring for her husband since his diagnosis in 2007. She does get sitters to give her 2 days off during the week to run errands and have time with her friends. But other than those limited hours, she is providing 100% of his care 24 hours a day. Not only that but with an unbelievable attitude. So at the support group meeting she says she feels like she should still be taking her husband to church. She doesn't because the effort involved to get him ready and there has become monumental. And again, she could be a role model for other caregivers, yet she beats herself up because she thinks she should still be doing more.
Maybe this has given me an idea for the next caregiver support group. Maybe we should talk about all those "shoulds" that are so damaging to people. It is one thing to deal with it myself. But it truly breaks my heart to see someone who could be caregiver of the year, still feel they aren't doing enough. I pray that in the next couple weeks, God will reveal what I can do to help caregiver's not be so hard on themselves.
Subscribe to:
Posts (Atom)