I'm struggling with my every day role, or should I say roles, in my life now that for the most part things are back to normal. Though I'm a wife, it's not in any typical sense anymore - not a partnership - so I'm trying to work that out. And though I'm a mother, it's different with grown children and not a daily role. And I'm a sister, but after months of dependence on my sisters and brothers to make it through the days, weeks, months, that is not the main headliner these days. The active role of daughter has been retired. Yet "orphan" doesn't quite fit. I work forty hours a week, but that role has changed over the last several years after a merger, and has changed significantly over the last six months, so I'm still figuring that one out. In my 30 years there, I climbed the ladder from the bottom to the top, and now I'm going down the other side - by choice, at least I think it was my choice! - giving up any leadership role or supervisory role in order to allow more energy for the rest of my life roles. I guess I think my starring role right now is caregiver.
I'm back to focusing on my husband and his disease. Starting to research again. We are coming up on a year in July since his first visit to his neurologist and in August, his diagnosis. After living with this knowledge for almost a year, I find myself wondering what to do now. Dave doesn't need care in the typical way. His daily living skills are in tact. The "symptoms" taken one by one are not uncommon among many people, and sometimes I find myself second guessing his diagnosis. Maybe he's fine and just getting old. Maybe there is no reason for concern. Maybe his brain had atrophy a long time ago and has just been holding for along time and will continue to do so. His decline has seemed slow. But as I have more time to spend with him and observe him, I know there's something missing, a part of him is gone. Or maybe it's that he seems to be in his own very small world and he doesn't "need" us to be satisfied with his life. I just don't get it. It is so frustrating that he would be "happy" with how things are - watching game shows all day; no significant interaction or conversation with others, including me. No depth to his life. But maybe that's my problem - not his. Maybe it's me reflecting on things that are missing from MY life - I don't get to sit and watch tv all day; I don't have significant interaction with him. I don't feel a depth to our relationship. So it's missing for me - but not for him. I don't know.
Over the 4th of July, we went to the parade and sat with family and friends, and later went to a block party at a neighbor's. There was a beautiful little girl - 7 months old - that he was commenting on - and then he said he doesn't remember when our children were that small. That stabs at my heart, brings tears to my eyes. I know it's a filing problem in his brain - if I find the right prompt or trigger - or some pictures - he'll be able to find the memories - it's not that they are gone - just misfiled. I need to get all our photos in photo albums so he can look through them and find those memories. That's the kind of care I need to provide. In conversation with some new neighbors, Dave was talking Spanish, trying to clarify who lives in which house - in my mind, he seemed a little eccentric, a little loud, a little over the top. And when he left the gathering, for some reason, I felt the need to explain to these new neighbors that he has a degenerative brain disease. One gentleman said no need to explain, Dave was perfectly charming. But what I witnessed was their chuckles at some things Dave said, some comments that somehow pricked me. In thinking back, if I wasn't aware that Dave had a disease, if I hadn't known him for 38 years and how he used to be, maybe I wouldn't have felt he was odd. I guess I was embarrassed. And that is sad. One of the gentleman made the comment that it was a good thing Dave had me along, because he was constantly having me fill in the parts of conversations he wasn't sure of - like how many years we've lived in our house, how many years we've been married, how long since he worked, when we moved here, what I do for work, etc. That's not so unusual, right? It is more the way he says it. Another gentleman commented it was like watching a comedy show - they were not being unkind or anything like that. I just took it that way. A little sensitive, I guess. I guess one of the awful things about the disease is right now there is no obvious symptoms, like an arm missing, or a hole in his head, or whatever. The whole issue right now for me is that he's not the man he used to be. So much of the depth that made him who he was seems to be gone. Yes, he is still a kind gentle man. But a lot of him is missing. Or I'm missing those parts of him that aren't evident any more. But that's normal, right?? People change. I don't know. Maybe it is all just normal progression of aging. Not.
I guess I just wait. And watch. And wonder what's to come. Part of me wishes things would move along, so I would have validation of the diagnosis, validation of progression. Why would I want that? Part of me wishes I didn't know about this diagnosis. Have I given up hope? Am I expecting less of him, and in return getting less?
In my heart, I know he has this disease. I know the information I read about the behavioral variant type of Frontotemporal Degeneration fits so amazingly to his symptoms, it must be true. But I don't know what to do for him - and I miss him - the full person. It brings to mind our wedding vows - I take you to be my husband, loving you now and always. I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed in you. I promise to be open and honest with you always, and share your dreams and ambitions and help you to fulfil them. I make this commitment of love, faith, and hope, believing that God is in the midst of it all. Nothing about "in sickness and in health" stuck in there, but the commitment is there. The sickness right now has resulted in no dreams or ambitions - he just doesn't have any. Life is not really peaceful, but it isn't in disorder. How can I be disappointed in him? This isn't his fault. This whole middle ground - this neutral territory - this waiting - I am not certain what to do with it. I'm rambling. I need to be thankful for each day, and thankful that he is maintaining and stable.
As far as my everyday life - I'm feeling less unbalanced - much lighter. Making a quilt for my first grandchild, due in a couple of weeks. Doing some things I enjoy. Laughing more. That is feeling good. I need to keep moving forward while I can - do some things for myself - and not feel guilty about that. It will make me a better caregiver. Ugh - I don't like that word - caregiver - that seems one role I'm not certain I can manage.
Tuesday, July 7, 2015
Wednesday, June 17, 2015
Chapter 27 "Alice had got so much into the way of expecting nothing but out-of-the-way things to happen, that it seemed quite dull and stupid for life to go on in the common way."
It has been a long, long couple of months. Life goes on. My father passed away April 10 at home. We had a wonderful service for him with bag pipes, family all together, lots of grandchildren and great-grandchildren, military honors. Best of all, there was a letter to us all - at least that's what it felt like. My next to youngest brother came across a letter my dad had written to him when he was away at his first year of college, and he had one of his daughters read it at the funeral service. It was as if it was to all of us. It revealed to me a more honest and thoughtful side of my dad that was touching. It was one of those letters we all want to write to our children about life, about mistakes we made and about our children doing better - being better - then we are. A perfect gift for all of us.
Today a young couple moved into my dad's house! I can see lights in the window - I can imagine the excitement of the first home - painting, planning, decorating - new life. It makes me smile. And it feels like life might get back to normal now. The last eight weeks have been a whirlwind to work with my father's second wife in getting his affairs wrapped up, clearing out my dad's house, dividing up belongings in a "fair" way between eleven siblings - and I'm not done yet! But getting there.
Back to normal - which means having more time - more time to dwell on my husband's disease and begin to wonder all over again what's in store for us. He had a follow up CT scan a couple of weeks ago. His subdural hematoma has reduced in size 80%. So we have a follow up CT in six months, and hopefully the last 20% will have been absorbed and things will look back to "normal". I guess one advantage to these CT scans is to be able to see if more atrophy has occurred. How bizarre. I would have never expected to be wondering about these things a year ago. In August, we'll be coming up on one year since diagnosis. He had another driving evaluation two weeks ago at the six month point since his seizures after his fall in November. He did ok. It was with reservation that he can drive again. He is not to drive at night, or on the highway. And he must be supervised for several weeks before he can drive on his own. So we're working on that. I'm not certain how I'll feel about him driving again alone. There is a part of me that can't wait til he can drive himself to the senior center about a mile away for his daily exercise, or to the grocery store about a mile away to pick up some things he needs or notices we're running low on. Since I've been back to work for a couple of months, most days I get a phone call or two from Dave, letting me know we need something from the store - and when I get home from work, first thing I'm asked is when we might go to the grocery store. And I'm asked repeatedly until we go. Unfortunately I am having a hard time answering that same question everyday in a patient way. At the same time, I need to step back and judge if I really think he is capable of driving safely. It is not a matter of him getting lost. That is not a problem, at least for now. It is more being able to judge distance, turns, parking - making sure til he's used to driving again that he doesn't adjust the radio station, or the mirrors or the windows. It is tough. AND NO FAIR!
What is fair? Not a lot. I struggled a lot with what was "fair" in dividing up my father's household property. And what is "fair" is actually so subjective! I often feel my life isn't fair - my "normal" isn't fair - and yet, I wouldn't trade places with anyone I know, because while their lives may seem less complicated, I don't want their concerns or troubles. The concept of "fairness" seems overrated. A lot of life is luck - and I feel we are all lucky at different times and in different situations - and when we're lucky, it probably appears unfair to others! And if we're REALLY lucky, we are blessed with a temperament that doesn't stress over what is fair! Sometimes lately I've felt like I'm in a competition for "who has the saddest life story?"! I definitely don't - but when mired in daily life - in adjusting to my "normal" again, I've thrown a few too many pity parties for myself. It is amazing how healing it can be to stop and breathe - to clear my mind of stressors about work, my husband, my children - to not sweat the small stuff, to not worry about things I can not change. I am hoping with practice and daily commitment to take a few minutes to breathe that I will re-balance my perspective and get back to being a positive productive person and uplifting of others. Because when I get right down to it, I am blessed with many things in my life - I have more then my fair share of blessings!
Each person's challenges - demons - burdens - are unique - we all have them. I share my feelings here to help myself, but mostly to touch someone else who may be struggling with similar issues - or similar pain - I somehow feel I must choose words carefully - like using the word "issue" instead of the word "pain". Reality is my life is painful at times - I can't pretend it's not. I can't wish it away. I can't deny it. But accepting it, owning it, putting it in perspective, and finding the time to enjoy life and take care of myself so I can face the challenge is what I need to do to get by. Like we are all doing! And in contrast, my blessings are many, so many - and a grandchild in the next month! Somehow I seem wired to get caught up in the negative things - so it will be purposeful on my part to concentrate on the positive. My husband doesn't have to worry about all this - his FTD successfully seems to blunt any feelings of inadequacy, inability, concern and worry over the future. I am not so blessed in that regard! But I'm learning to not dwell on it all.
In July, it will be one year since my son's wedding celebration, one year since we first saw Dr. Bruns and had Dave's first MRI. In August - one year since we got some answers and came up with more questions. I'm interested in returning my focus to raising awareness of Frontotemporal Degeneration, working on a plan for the future, seeing where this journey takes us. Looking forward to what the next year brings.
Today a young couple moved into my dad's house! I can see lights in the window - I can imagine the excitement of the first home - painting, planning, decorating - new life. It makes me smile. And it feels like life might get back to normal now. The last eight weeks have been a whirlwind to work with my father's second wife in getting his affairs wrapped up, clearing out my dad's house, dividing up belongings in a "fair" way between eleven siblings - and I'm not done yet! But getting there.
Back to normal - which means having more time - more time to dwell on my husband's disease and begin to wonder all over again what's in store for us. He had a follow up CT scan a couple of weeks ago. His subdural hematoma has reduced in size 80%. So we have a follow up CT in six months, and hopefully the last 20% will have been absorbed and things will look back to "normal". I guess one advantage to these CT scans is to be able to see if more atrophy has occurred. How bizarre. I would have never expected to be wondering about these things a year ago. In August, we'll be coming up on one year since diagnosis. He had another driving evaluation two weeks ago at the six month point since his seizures after his fall in November. He did ok. It was with reservation that he can drive again. He is not to drive at night, or on the highway. And he must be supervised for several weeks before he can drive on his own. So we're working on that. I'm not certain how I'll feel about him driving again alone. There is a part of me that can't wait til he can drive himself to the senior center about a mile away for his daily exercise, or to the grocery store about a mile away to pick up some things he needs or notices we're running low on. Since I've been back to work for a couple of months, most days I get a phone call or two from Dave, letting me know we need something from the store - and when I get home from work, first thing I'm asked is when we might go to the grocery store. And I'm asked repeatedly until we go. Unfortunately I am having a hard time answering that same question everyday in a patient way. At the same time, I need to step back and judge if I really think he is capable of driving safely. It is not a matter of him getting lost. That is not a problem, at least for now. It is more being able to judge distance, turns, parking - making sure til he's used to driving again that he doesn't adjust the radio station, or the mirrors or the windows. It is tough. AND NO FAIR!
What is fair? Not a lot. I struggled a lot with what was "fair" in dividing up my father's household property. And what is "fair" is actually so subjective! I often feel my life isn't fair - my "normal" isn't fair - and yet, I wouldn't trade places with anyone I know, because while their lives may seem less complicated, I don't want their concerns or troubles. The concept of "fairness" seems overrated. A lot of life is luck - and I feel we are all lucky at different times and in different situations - and when we're lucky, it probably appears unfair to others! And if we're REALLY lucky, we are blessed with a temperament that doesn't stress over what is fair! Sometimes lately I've felt like I'm in a competition for "who has the saddest life story?"! I definitely don't - but when mired in daily life - in adjusting to my "normal" again, I've thrown a few too many pity parties for myself. It is amazing how healing it can be to stop and breathe - to clear my mind of stressors about work, my husband, my children - to not sweat the small stuff, to not worry about things I can not change. I am hoping with practice and daily commitment to take a few minutes to breathe that I will re-balance my perspective and get back to being a positive productive person and uplifting of others. Because when I get right down to it, I am blessed with many things in my life - I have more then my fair share of blessings!
Each person's challenges - demons - burdens - are unique - we all have them. I share my feelings here to help myself, but mostly to touch someone else who may be struggling with similar issues - or similar pain - I somehow feel I must choose words carefully - like using the word "issue" instead of the word "pain". Reality is my life is painful at times - I can't pretend it's not. I can't wish it away. I can't deny it. But accepting it, owning it, putting it in perspective, and finding the time to enjoy life and take care of myself so I can face the challenge is what I need to do to get by. Like we are all doing! And in contrast, my blessings are many, so many - and a grandchild in the next month! Somehow I seem wired to get caught up in the negative things - so it will be purposeful on my part to concentrate on the positive. My husband doesn't have to worry about all this - his FTD successfully seems to blunt any feelings of inadequacy, inability, concern and worry over the future. I am not so blessed in that regard! But I'm learning to not dwell on it all.
In July, it will be one year since my son's wedding celebration, one year since we first saw Dr. Bruns and had Dave's first MRI. In August - one year since we got some answers and came up with more questions. I'm interested in returning my focus to raising awareness of Frontotemporal Degeneration, working on a plan for the future, seeing where this journey takes us. Looking forward to what the next year brings.
Sunday, April 5, 2015
Chapter 26 "The time has come, the walrus said, to talk of many things."
My father is dying. He is probably in the last couple of days of his life. It has been a rough few weeks for many - my children, my sisters, my brothers, their families, my father's wife, and the list goes on. It has not been a quiet, peaceful journey for him. It has been ugly and painful to witness, as it has been going on for some months. A roller coaster ride - good days and bad - I don't think my patience and emotions have ever been tested so much.
While I am fortunate to have this time and be able to help care for my father, I do not like what I've discovered about myself in the process. But that is something I'm going to keep to myself, because to put it in the written form will cement it in my mind forever. I hope that time brings back a balance to my life that allows me to put some of the low points behind me and dispel the painful thoughts and feelings that have shown themselves in recent weeks.
My father is a good man. He is a retired Navy commander - not one for caring and affectionate exchanges, or for high praise or approval, deserved or not. He says what he thinks, often not filtering for how it might hurt. One of his mantras when I was growing up was "I may not always be right, but I am never wrong." And yet he is a brave man, fighting in World War II as a submariner; was a naval aviator; an engineer; a faithful Catholic, and a father of twelve. I have so many wonderful memories from childhood, and he did something right and has given me eleven siblings, each unique and different. Plus he and my mother raised twelve children! Twelve children! There should be a medal for that! My mother died just shy of their 50th wedding anniversary. My dad took such loving care of her for the last couple of years of her life when she had breast cancer. She died at home. I remember him lying in bed with her, talking of their courting the day before she died - we were privy to this only because of a monitor that was set up to keep "ears" on mom in her last days. It felt a sacred moment. She went to sleep on a Tuesday, and died on a Wednesday. It was short and peaceful. I guess I thought my dad's death at home would be the same. His has been a battle - he's cried out surrender, but that has not happened yet. I believe for the first time, my dad may be feeling fear - fear of what is on the other side - fear that there is nothing - fear that when he breathes his last breath, that's it.
I believe that each of us in my family had very different experiences with our parents, depending on our gender, temperament, and birth order. I'm one of ten middle children - fifth in birth order. I remember a happy childhood - always a new baby on the way - little ones around to take care of and love - always someone to play with. Wonderful memories - Christmas; Dad reading poems at bed time; Dad taking us out on the boat and teaching us to water ski; Devon pool all day every day in the summer; sharing a room; Ghost in the Graveyard; Kick the Can; Hide and Seek; singing; "plug ins" after dinner. I had to learn to be flexible, not sweat the small stuff, to be independent, to find work. I learned the things I didn't want to be as a parent - and yet I often heard myself sounding just like my mom or dad. I have a feeling that is a perpetual challenge for each generation. But what I'm trying to say is that despite my dad's shortcomings that have been especially evident since my mother died sixteen years ago, I got an amazing foundation for life, and eleven strong interesting sisters and brothers, thirty plus nieces and nephews, and fifteen plus great nieces and nephews. I got to learn to get along with many personalities all under one roof - all different ages - males and females. What I might not have gotten from my parents busy with twelve children I got in spades from my siblings. And I don't think I would change any of it. Because it would change who I am now - and I think I turned out pretty well. I wouldn't want to have a vote on it at this particular time in my life!
Maybe I'm viewing it all through rose colored glasses, but I think I'm more realistic then that. Plus I now have my own parenting mistakes for comparison. I think my dad did well. And his greatest gift of all to me is my brothers and sisters.
So, dad, if you're able to read my blog when you've taken your last breath on this earth, know that you are loved, and in fact you'll live on in all our hearts - and in our personalities and temperaments and traditions and parenting. We've all learned lessons from you that have shaped our lives and made us who we are. Thank you! I love you.
While I am fortunate to have this time and be able to help care for my father, I do not like what I've discovered about myself in the process. But that is something I'm going to keep to myself, because to put it in the written form will cement it in my mind forever. I hope that time brings back a balance to my life that allows me to put some of the low points behind me and dispel the painful thoughts and feelings that have shown themselves in recent weeks.
My father is a good man. He is a retired Navy commander - not one for caring and affectionate exchanges, or for high praise or approval, deserved or not. He says what he thinks, often not filtering for how it might hurt. One of his mantras when I was growing up was "I may not always be right, but I am never wrong." And yet he is a brave man, fighting in World War II as a submariner; was a naval aviator; an engineer; a faithful Catholic, and a father of twelve. I have so many wonderful memories from childhood, and he did something right and has given me eleven siblings, each unique and different. Plus he and my mother raised twelve children! Twelve children! There should be a medal for that! My mother died just shy of their 50th wedding anniversary. My dad took such loving care of her for the last couple of years of her life when she had breast cancer. She died at home. I remember him lying in bed with her, talking of their courting the day before she died - we were privy to this only because of a monitor that was set up to keep "ears" on mom in her last days. It felt a sacred moment. She went to sleep on a Tuesday, and died on a Wednesday. It was short and peaceful. I guess I thought my dad's death at home would be the same. His has been a battle - he's cried out surrender, but that has not happened yet. I believe for the first time, my dad may be feeling fear - fear of what is on the other side - fear that there is nothing - fear that when he breathes his last breath, that's it.
I believe that each of us in my family had very different experiences with our parents, depending on our gender, temperament, and birth order. I'm one of ten middle children - fifth in birth order. I remember a happy childhood - always a new baby on the way - little ones around to take care of and love - always someone to play with. Wonderful memories - Christmas; Dad reading poems at bed time; Dad taking us out on the boat and teaching us to water ski; Devon pool all day every day in the summer; sharing a room; Ghost in the Graveyard; Kick the Can; Hide and Seek; singing; "plug ins" after dinner. I had to learn to be flexible, not sweat the small stuff, to be independent, to find work. I learned the things I didn't want to be as a parent - and yet I often heard myself sounding just like my mom or dad. I have a feeling that is a perpetual challenge for each generation. But what I'm trying to say is that despite my dad's shortcomings that have been especially evident since my mother died sixteen years ago, I got an amazing foundation for life, and eleven strong interesting sisters and brothers, thirty plus nieces and nephews, and fifteen plus great nieces and nephews. I got to learn to get along with many personalities all under one roof - all different ages - males and females. What I might not have gotten from my parents busy with twelve children I got in spades from my siblings. And I don't think I would change any of it. Because it would change who I am now - and I think I turned out pretty well. I wouldn't want to have a vote on it at this particular time in my life!
Maybe I'm viewing it all through rose colored glasses, but I think I'm more realistic then that. Plus I now have my own parenting mistakes for comparison. I think my dad did well. And his greatest gift of all to me is my brothers and sisters.
So, dad, if you're able to read my blog when you've taken your last breath on this earth, know that you are loved, and in fact you'll live on in all our hearts - and in our personalities and temperaments and traditions and parenting. We've all learned lessons from you that have shaped our lives and made us who we are. Thank you! I love you.
Wednesday, March 11, 2015
Chapter 25 "Jam tomorrow and jam yesterday, but never jam today."
I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you
I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I’m not gonna miss you
I’m not gonna miss you
These are the words to a song Glen Campbell wrote before he hit the last stages of Alzheimer's. I heard it for the first time on the Academy Awards show a few weeks ago. It was up for an Oscar. I had to google it to find the lyrics, and when I read them, I cried. Silly me. But it so hit home for me with my experience with my husband's FTD. I read the lyrics to my son, and started to choke up again. It brings to heart all the things I'll never have with him again, all the things my kids won't have. And he doesn't have any sense of how this all affects us and changes our lives. I should be embracing this fact - that he won't feel guilt or shame about his condition. I know my father struggles with what we are having to do for him to keep him comfortable and take care of him; he feels guilty about still being alive, about this last chapter of his life being such a slow decline, worried he has become a burden.
My husband is doing well at this point. We are not able to get in for a second opinion until the same week as our follow -up appointment with our original surgeon. My main concern was waiting three months, but if this new neurosurgeon doesn't see anything urgent in the information he has that requires immediate intention....then maybe all IS well. Early in May, Dave will have another driver's evaluation to see if he can resume driving. I would like him to be able to drive - but I would feel most comfortable with a limited range - like to the grocery store, the senior center, church - nothing that requires highway driving on his own. We'll see. I wonder if he'll pass.
My father is dying a rather slow miserable death. That has been taking a lot of my time. Though at times it is exhausting and overwhelming, I'm glad I'm able to help. My husband, Dave, in his naïve way, commented at a meeting with my in-town siblings while we were trying to arrange coverage and care for my dad - "he needs to die so he can rest in peace and not be worrying about all this, and so all of you can rest in peace, too." The look on my sister's face when he said that was priceless! He said what I think all of us have had run through our minds at one time or another. Only Dave could say it out loud! It has been a blessing to have lots of brothers and sisters - two brothers were able to come to town and take five and six day shifts to share in the care. Two sisters here in town, and two brothers are helping - with seven of us sharing the burden, it has lightened. And the others are offering support from far away. It is tough to realize we can't do it all - that outside help is needed - that none of us are super heroes. But all together - we have done pretty well.
I don't know how long my dad has - I really did not think he would still be alive after how poorly he was doing last November and December - but he rallied! And just this past weekend, has taken a tumble after being on hold for awhile. Maybe he will rally again. I don't know. So many things we don't know - and things can turn on a dime. Expect the unexpected. It really is true. Life is full of surprises - some good - some bad - so we have to hold on to the good ones and let them carry us through the bad ones. I wouldn't mind a run of good surprises in the near future. I hold on to the dream of my little grand son to be born in July - that will start a whole new chapter in my life - add a whole new wonderful dimension. Can't wait!
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you
I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I’m not gonna miss you
I’m not gonna miss you
These are the words to a song Glen Campbell wrote before he hit the last stages of Alzheimer's. I heard it for the first time on the Academy Awards show a few weeks ago. It was up for an Oscar. I had to google it to find the lyrics, and when I read them, I cried. Silly me. But it so hit home for me with my experience with my husband's FTD. I read the lyrics to my son, and started to choke up again. It brings to heart all the things I'll never have with him again, all the things my kids won't have. And he doesn't have any sense of how this all affects us and changes our lives. I should be embracing this fact - that he won't feel guilt or shame about his condition. I know my father struggles with what we are having to do for him to keep him comfortable and take care of him; he feels guilty about still being alive, about this last chapter of his life being such a slow decline, worried he has become a burden.
My husband is doing well at this point. We are not able to get in for a second opinion until the same week as our follow -up appointment with our original surgeon. My main concern was waiting three months, but if this new neurosurgeon doesn't see anything urgent in the information he has that requires immediate intention....then maybe all IS well. Early in May, Dave will have another driver's evaluation to see if he can resume driving. I would like him to be able to drive - but I would feel most comfortable with a limited range - like to the grocery store, the senior center, church - nothing that requires highway driving on his own. We'll see. I wonder if he'll pass.
My father is dying a rather slow miserable death. That has been taking a lot of my time. Though at times it is exhausting and overwhelming, I'm glad I'm able to help. My husband, Dave, in his naïve way, commented at a meeting with my in-town siblings while we were trying to arrange coverage and care for my dad - "he needs to die so he can rest in peace and not be worrying about all this, and so all of you can rest in peace, too." The look on my sister's face when he said that was priceless! He said what I think all of us have had run through our minds at one time or another. Only Dave could say it out loud! It has been a blessing to have lots of brothers and sisters - two brothers were able to come to town and take five and six day shifts to share in the care. Two sisters here in town, and two brothers are helping - with seven of us sharing the burden, it has lightened. And the others are offering support from far away. It is tough to realize we can't do it all - that outside help is needed - that none of us are super heroes. But all together - we have done pretty well.
I don't know how long my dad has - I really did not think he would still be alive after how poorly he was doing last November and December - but he rallied! And just this past weekend, has taken a tumble after being on hold for awhile. Maybe he will rally again. I don't know. So many things we don't know - and things can turn on a dime. Expect the unexpected. It really is true. Life is full of surprises - some good - some bad - so we have to hold on to the good ones and let them carry us through the bad ones. I wouldn't mind a run of good surprises in the near future. I hold on to the dream of my little grand son to be born in July - that will start a whole new chapter in my life - add a whole new wonderful dimension. Can't wait!
Sunday, February 22, 2015
Chapter 24 “Imagination is the only weapon in the war against reality.”
We had our MRI, and our neurologist called us that afternoon with concerns about what was reported. She gave us suggestions on what we might ask the neurosurgeon at our appointment the next day.
We saw the neurosurgeon - I think he was in the office for maybe two minutes - said it was a little smaller, so we would just do a follow up in three months.....I was so surprised by the fact we were not scheduling surgery that I didn't really ask any questions. My bad.
Even though two weeks previously Dave needed surgery that was delayed for two weeks at my request, apparently the hematoma was slightly smaller. That was of course good news - no surgery and the hematoma was getting smaller. But three months seem a long time for any follow up. I contacted our neurologist and gave her the information. I requested the written report from the CT scan be mailed to us. When it came, yes, the radiologist reported a slight decrease in the size of the hematoma, but an increase in the size of the subdural hygroma. To me, that doesn't seem to be the best situation. Will the hygroma go away eventually? In the mean time, there is still compression of the brain between the hematoma and the hygroma, isn't there? And with Dave being able to resume all normal activity, three months seems like a long time for a follow up CT. I guess I thought maybe a month?
This feels like I'm between a rock and a hard place. I'm glad he doesn't need surgery right now - he seemed relieved. But I feel very concerned that he is walking around with this moderate subdural hematoma. I guess there's no pleasing me.
At this point, we are scheduling a second opinion to have another neurosurgeon who Dr. B recommended to take a look at everything and meet with us. We received all of our current neurosurgeon's records, including a copy of a letter he sent to our primary care physician. The interesting thing is the radiologist report from his office on the CT scan mentions different measurements in the size of the subdural hematoma then his letter to our family physician does! The letter mentions a smaller size then the radiologist report. And there is no mention of the hygroma. And this could all be perfectly normal practice in the medical field - these reports are meant for doctors - not me. THUS IS THE DANGER IN BEING AN ARMCHAIR DIAGNOSTICIAN! I don't even know if it means anything - but I've read and researched enough that it all makes me wonder and question. I would probably be better off if I didn't try to figure this all out!
The doctor we have been referred to for a second opinion seems to excel in his communications with families - I will have my questions all prepared, hopefully get all this explained to us, and feel comfortable with the three months til follow up. It's a little crazy the way I ask SO many questions and feel the need to understand all this. But I know in normal circumstances, in a person without brain atrophy, a person would probably be displaying some neurological symptoms and require surgery. In this case, the curse of FTD and his brain atrophy is actually a blessing. I want to understand why Dave isn't having symptoms. What happens with the hygroma? Does it need to be managed? Will the midline shift just stay that way and if so, are there any long term effects from it? Will his brain re-expand? Is it ok if it doesn't? Is three months the normal course of follow up?
I'm looking forward to talking with someone willing to answer my questions and explain all this to me! I can be a pest, I know. But all for a good reason.
Yesterday was a special day for us - my son and his wife found out the gender of their baby they are expecting in July. Dave and I went over to my dad's to Skype with my son - friends of theirs were having a "gender reveal" party. My dad thought it sounded like a fun idea, and I wanted him to get to see what his latest great grandchild will be! We got all set up and were anxiously waiting for Michael and Jordyn to open the box that would hold either blue or pink balloons! My dad asked Dave if he was excited to be a grandpa, and whether he thought it would be a boy or girl. It hurt my heart to hear Dave's flat response of "yes, I guess so." While I know in my heart that deep in his brain somewhere and certainly in his heart and soul, he is excited to be a grandpa; he just can't express any kind of emotion. There was no excitement, no anticipation of the reveal of boy or girl, nothing. It is the tiny moments like that, that happen in a day, moments that should evoke responses of joy and love and excitement - that don't - that pick away at me and remind me of how much I miss him and how he used to be. I miss sharing these big moments with someone. Yes, my sisters and brothers all reach out. But that's not the same. Not the same as lying in bed at night and talking about how much fun it will be - how great of grandparents we'll be - how we'll make a nuisance of ourselves trying to visit this first grandchild. It just isn't going to happen that way. And maybe that's not how it would be happening if all was well with Dave! Maybe I'm romanticizing all this. I just don't know. It has been so long since we talked about these kinds of things, since I've had a real partner - this disease has been affecting him for at least fourteen years. I'm still adjusting to being "alone", but not really by myself.
I don't need any time to adjust to being a grandma in a few months! I imagine it will be such fun, and something to look forward to on some of my darker days - a bright star in the future. Twinkle, twinkle, little star - how I wonder what you are - it's a boy!!!
We saw the neurosurgeon - I think he was in the office for maybe two minutes - said it was a little smaller, so we would just do a follow up in three months.....I was so surprised by the fact we were not scheduling surgery that I didn't really ask any questions. My bad.
Even though two weeks previously Dave needed surgery that was delayed for two weeks at my request, apparently the hematoma was slightly smaller. That was of course good news - no surgery and the hematoma was getting smaller. But three months seem a long time for any follow up. I contacted our neurologist and gave her the information. I requested the written report from the CT scan be mailed to us. When it came, yes, the radiologist reported a slight decrease in the size of the hematoma, but an increase in the size of the subdural hygroma. To me, that doesn't seem to be the best situation. Will the hygroma go away eventually? In the mean time, there is still compression of the brain between the hematoma and the hygroma, isn't there? And with Dave being able to resume all normal activity, three months seems like a long time for a follow up CT. I guess I thought maybe a month?
This feels like I'm between a rock and a hard place. I'm glad he doesn't need surgery right now - he seemed relieved. But I feel very concerned that he is walking around with this moderate subdural hematoma. I guess there's no pleasing me.
At this point, we are scheduling a second opinion to have another neurosurgeon who Dr. B recommended to take a look at everything and meet with us. We received all of our current neurosurgeon's records, including a copy of a letter he sent to our primary care physician. The interesting thing is the radiologist report from his office on the CT scan mentions different measurements in the size of the subdural hematoma then his letter to our family physician does! The letter mentions a smaller size then the radiologist report. And there is no mention of the hygroma. And this could all be perfectly normal practice in the medical field - these reports are meant for doctors - not me. THUS IS THE DANGER IN BEING AN ARMCHAIR DIAGNOSTICIAN! I don't even know if it means anything - but I've read and researched enough that it all makes me wonder and question. I would probably be better off if I didn't try to figure this all out!
The doctor we have been referred to for a second opinion seems to excel in his communications with families - I will have my questions all prepared, hopefully get all this explained to us, and feel comfortable with the three months til follow up. It's a little crazy the way I ask SO many questions and feel the need to understand all this. But I know in normal circumstances, in a person without brain atrophy, a person would probably be displaying some neurological symptoms and require surgery. In this case, the curse of FTD and his brain atrophy is actually a blessing. I want to understand why Dave isn't having symptoms. What happens with the hygroma? Does it need to be managed? Will the midline shift just stay that way and if so, are there any long term effects from it? Will his brain re-expand? Is it ok if it doesn't? Is three months the normal course of follow up?
I'm looking forward to talking with someone willing to answer my questions and explain all this to me! I can be a pest, I know. But all for a good reason.
Yesterday was a special day for us - my son and his wife found out the gender of their baby they are expecting in July. Dave and I went over to my dad's to Skype with my son - friends of theirs were having a "gender reveal" party. My dad thought it sounded like a fun idea, and I wanted him to get to see what his latest great grandchild will be! We got all set up and were anxiously waiting for Michael and Jordyn to open the box that would hold either blue or pink balloons! My dad asked Dave if he was excited to be a grandpa, and whether he thought it would be a boy or girl. It hurt my heart to hear Dave's flat response of "yes, I guess so." While I know in my heart that deep in his brain somewhere and certainly in his heart and soul, he is excited to be a grandpa; he just can't express any kind of emotion. There was no excitement, no anticipation of the reveal of boy or girl, nothing. It is the tiny moments like that, that happen in a day, moments that should evoke responses of joy and love and excitement - that don't - that pick away at me and remind me of how much I miss him and how he used to be. I miss sharing these big moments with someone. Yes, my sisters and brothers all reach out. But that's not the same. Not the same as lying in bed at night and talking about how much fun it will be - how great of grandparents we'll be - how we'll make a nuisance of ourselves trying to visit this first grandchild. It just isn't going to happen that way. And maybe that's not how it would be happening if all was well with Dave! Maybe I'm romanticizing all this. I just don't know. It has been so long since we talked about these kinds of things, since I've had a real partner - this disease has been affecting him for at least fourteen years. I'm still adjusting to being "alone", but not really by myself.
I don't need any time to adjust to being a grandma in a few months! I imagine it will be such fun, and something to look forward to on some of my darker days - a bright star in the future. Twinkle, twinkle, little star - how I wonder what you are - it's a boy!!!
Tuesday, February 10, 2015
Chapter 23 "My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere, you must run twice as fast as that."
Just about six months since diagnosis. Bumps along the way. Almost six months since I started this blog. It has helped me to put thoughts down, to reflect on all of this change in our lives. Lately it seems to just have served as a journal for the last couple of months as I've navigated new waters and it has strayed from my original ideas of what this blog would be. I wanted to share my experience with frontotemporal degeneration beginning with diagnosis in the hope that others would find it helpful to them. I have access to statistics on BlogSpot, showing the number of times my blog is viewed, which posts readers have "clicked" on to read, which countries readers are from, and how my blog is accessed. I've been pleased to find that the majority of readers are accessing my blog through the Association of Frontotemporal Degeneration website (theaftd.org). I hope readers are finding this helpful.
I would appreciate any comments you might have - about this blog, about your experiences with FTD, about any information you think I would find helpful, any tips on how to get through this with a good frame of mind. I know I'm still early in this journey. I've found I'm growing weary of it with the new developments from the chronic subdural hematomas. I don't seem to have the time to stop and take stock of life, to remember that today is the best day Dave is going to have, to take advantage of the knowledge and make today count. I'm spending time researching, on the phone with the insurance company and all the doctors and groups that we're getting bills from now, arguing that the fact the doctor on the neuro critical care floor for two days during Dave's second hospitalization isn't on our insurance plan should be overridden by the fact the hospital is on our plan - but this particular doctor won't accept the allowed amount from our insurance company, and is requesting full payment for the amount billed - which sets me to raging about the greed of this doctor, and the fact that the hospital shouldn't contract with a group of doctors that won't accept the allowed amount from insurance companies, especially when a person has no control when entering the hospital of knowing who might be on for the day. Medical bills are mounting from three hospitalizations, and we have another one coming up. I get to wondering about the third hospitalization and if there were any doctors that time that weren't on our insurance, and what about this next hospitalization? I am angry about the lack of control over any of this - too many things are out of my control right now. I worry about my job, and the fact my family medical leave is running out soon - what do I do if/when Dave has more issues? I'm the only breadwinner. I worry about the financial aspect of his current health issues, as well as the long term prognosis of what seems to me to be a constant recurrence of the subdural hematoma. Does all this make the prognosis for the FTD worse? Shorten his life? No definitive answers, I know. Just some of the myriad of thoughts circling through my brain. Thinking for two, since that very part of Dave's brain just doesn't function well.
And yet, just getting this all down some how brings into perspective how much worse this could be. We have insurance, we have a roof over our heads and food on the table. I have family who are supporting me through all this, and a wonderful advocate in our neurologist, helping coordinate care and helping us make decisions. I still wish to run away some times. At a time when many turn to their faith for strength, I am feeling angry. I know bad things happen to good people, and that God isn't responsible for all this. But I'm wallowing right now. I pray, but it doesn't bring me peace at this time. I need to get past the next couple of weeks, get Dave as healthy as he can be, get back to work, get back to some kind of more normal. Nothing about right now seems normal, or I guess I just can't accept it might be my new normal. It can't be how it's going to be from here on out. So I have to keep telling myself it could be worse....it could be worse. I know this to be true. I just need to get to the other side of the brain injury problems. I just need to breathe (I'm realizing I use the word "just" a lot...??). I know I said 2015 had to be better then 2014. I'm changing the calendar! I'm picking June as the new target for this being behind us.
I want to get back to making this blog about positive things - about proper perspective - about enjoying this life - to raise awareness of FTD. I need to get out from under the little rain cloud that seems to be following me! Because life IS good. We had an MRI today, a CT scan tomorrow, and a meeting with the neurosurgeon to schedule our next surgery! My "to do" list is different then most - but certainly very interesting and challenging! Keeps me on my toes.
I would appreciate any comments you might have - about this blog, about your experiences with FTD, about any information you think I would find helpful, any tips on how to get through this with a good frame of mind. I know I'm still early in this journey. I've found I'm growing weary of it with the new developments from the chronic subdural hematomas. I don't seem to have the time to stop and take stock of life, to remember that today is the best day Dave is going to have, to take advantage of the knowledge and make today count. I'm spending time researching, on the phone with the insurance company and all the doctors and groups that we're getting bills from now, arguing that the fact the doctor on the neuro critical care floor for two days during Dave's second hospitalization isn't on our insurance plan should be overridden by the fact the hospital is on our plan - but this particular doctor won't accept the allowed amount from our insurance company, and is requesting full payment for the amount billed - which sets me to raging about the greed of this doctor, and the fact that the hospital shouldn't contract with a group of doctors that won't accept the allowed amount from insurance companies, especially when a person has no control when entering the hospital of knowing who might be on for the day. Medical bills are mounting from three hospitalizations, and we have another one coming up. I get to wondering about the third hospitalization and if there were any doctors that time that weren't on our insurance, and what about this next hospitalization? I am angry about the lack of control over any of this - too many things are out of my control right now. I worry about my job, and the fact my family medical leave is running out soon - what do I do if/when Dave has more issues? I'm the only breadwinner. I worry about the financial aspect of his current health issues, as well as the long term prognosis of what seems to me to be a constant recurrence of the subdural hematoma. Does all this make the prognosis for the FTD worse? Shorten his life? No definitive answers, I know. Just some of the myriad of thoughts circling through my brain. Thinking for two, since that very part of Dave's brain just doesn't function well.
And yet, just getting this all down some how brings into perspective how much worse this could be. We have insurance, we have a roof over our heads and food on the table. I have family who are supporting me through all this, and a wonderful advocate in our neurologist, helping coordinate care and helping us make decisions. I still wish to run away some times. At a time when many turn to their faith for strength, I am feeling angry. I know bad things happen to good people, and that God isn't responsible for all this. But I'm wallowing right now. I pray, but it doesn't bring me peace at this time. I need to get past the next couple of weeks, get Dave as healthy as he can be, get back to work, get back to some kind of more normal. Nothing about right now seems normal, or I guess I just can't accept it might be my new normal. It can't be how it's going to be from here on out. So I have to keep telling myself it could be worse....it could be worse. I know this to be true. I just need to get to the other side of the brain injury problems. I just need to breathe (I'm realizing I use the word "just" a lot...??). I know I said 2015 had to be better then 2014. I'm changing the calendar! I'm picking June as the new target for this being behind us.
I want to get back to making this blog about positive things - about proper perspective - about enjoying this life - to raise awareness of FTD. I need to get out from under the little rain cloud that seems to be following me! Because life IS good. We had an MRI today, a CT scan tomorrow, and a meeting with the neurosurgeon to schedule our next surgery! My "to do" list is different then most - but certainly very interesting and challenging! Keeps me on my toes.
Monday, February 2, 2015
Chapter 22 "How puzzling all these changes are! I'm never sure what I'm going to be, from one minute to another."
The latest CT scan showed no change in the size of the subdural hematoma, but surgery will be required to remove the blood that is there. I have found quite a bit of information on line about managing this type of chronic subdural hematoma with continued recurrence. There is no "best practice" or specific protocol, especially when the client is asymptomatic - Dave doesn't have blurred vision, headaches, weakness on one side. The recurrence is most likely because of the cerebral atrophy he has - there is room for fluid to build up. His brain still has compression, he still has some midline shift - which seems it should be causing neurological problems, but none are apparent. With the atrophy, the bridging veins to the dura mater have been stretched and are more likely to tear. I'm wondering if the compression has done the same thing and perhaps stretched and torn other veins. Plus, how long can a brain stay compressed with no injury? These are some of the questions I haven't been able to find answers to.
The neurosurgeon agreed to watch his condition for two weeks and do another CT scan. This is a more conservative approach then having surgery right away. In the mean time, Dave can resume light activities and go back to exercising. I asked about waiting for two weeks because of several reasons. If the size of the hematoma is the same as it was after his surgery and is not causing any new neurological problems, I want to see if the size is increased over two more weeks where he is resuming more activity. If it does show increased size, my assumption would be that increased activity makes it bleed more. And it will be more likely to happen again after the next surgery. If the size remains the same, I feel like it means perhaps the torn vein is healing and recovery can happen - maybe this would be the last surgery! I feel I can't plan more then two weeks at a time because of too many unknowns. This is my new normal - day to day - never knowing what is going to happen. I am to watch for headaches, or weakness on his right side, as the subdural hematoma is in the left side of his skull. Should I see any symptoms, I'll call the neurosurgeon's office and he'll probably have surgery right away. For now, I'm assuming it will be the a couple of days after our next CT scan Feb. 11.
Somehow this is all starting to settle in and not causing me to panic anymore. I'm getting used to it. I'm feeling more confident with the information I've been able to find, and the realization that the more informed I am, the more I can advocate for Dave to get the care he needs.
We met with Dr. B today. It has now been six months since diagnosis. She spent over an hour with us. She is always so generous with her time and we never feel we are being rushed out of there. Dave completed the SAGE test in the waiting room. This is a tool developed by OSU to gauge dementia and cognitive decline. His score was significantly lower this time - a 9 vs 15 at his last visit. It is hard to know how much of the decline is the FTD and how much is the fall and the chronic subdural hematoma recurrence. So in fact he may not be asymptomatic with regard to the hematoma. I was very aware of the trouble he was having completing the paperwork, when in the past it has not been much of a challenge. It was the first definitive indication of something - just not certain of what. Dr. B indicated a second opinion regarding the subdural hematoma management was not out of line, especially when dealing with the brain. She works with three neurosurgeons right there in her group and will ask them to take a look at the CT scans. It seems it would be practical to go with one of the neurosurgeons in her office as communication between the two would be instantaneous. Though the FTD and the management of the CSDH are two different issues, they certainly are intertwined. It would also be comfortable as we really like and trust Dr. B. The other neurologist involved in this, Dr. L, is a seizure specialist. Dr. B and she are in the same practice also, though at different locations. They know each other well, so that lends itself to coordination of care on these matters. It sounds like this CSDH will resolve itself. Our plan for now is to see Dr. G, the neurosurgeon who has done the previous surgeries, next Wednesday for another CT scan and go from there unless I hear from Dr. B's office that there are other options.
Dave has gone back to exercising at the senior center three times a week for now. He is only going for half an hour. Once again, when I went to pick him up after the first time, the folks there were so glad to see him! They had sent three cards over the last month, telling him they were thinking of him and to get well soon. I got teary eyes. I am so thankful for them all. They accept him as he is, and enjoy his talking in Spanish - he has Spanish names for all of them - talks loud - has them all laughing and enjoying themselves while they exercise. It is great! We met with an attorney to take care of power of attorney, healthcare power of attorney, and wills. I'm looking into a grant available through our county for caregivers, hoping to get Dave into adult day care maybe two days a week to see how that goes. I'm going back to work tomorrow, at least part time for now, as the afternoons are still spent helping take care of my dad. So the rest of this week will feel a little more routine. I work just a few minutes from home, so if Dave has any troubles, he can easily call me. I'll check on him mid-day, and then be down the street at my dad's. We'll see how this goes - then next week, if he has surgery again, we'll be back to a different routine for a week or so - and then, adjust to a new routine again. I think I'm actually looking forward to getting back to work! I know there's a lot waiting for me - and a few days from now, I'll probably be looking forward to another switcheroo! But I know what's happening tomorrow. I could get used to that.
The neurosurgeon agreed to watch his condition for two weeks and do another CT scan. This is a more conservative approach then having surgery right away. In the mean time, Dave can resume light activities and go back to exercising. I asked about waiting for two weeks because of several reasons. If the size of the hematoma is the same as it was after his surgery and is not causing any new neurological problems, I want to see if the size is increased over two more weeks where he is resuming more activity. If it does show increased size, my assumption would be that increased activity makes it bleed more. And it will be more likely to happen again after the next surgery. If the size remains the same, I feel like it means perhaps the torn vein is healing and recovery can happen - maybe this would be the last surgery! I feel I can't plan more then two weeks at a time because of too many unknowns. This is my new normal - day to day - never knowing what is going to happen. I am to watch for headaches, or weakness on his right side, as the subdural hematoma is in the left side of his skull. Should I see any symptoms, I'll call the neurosurgeon's office and he'll probably have surgery right away. For now, I'm assuming it will be the a couple of days after our next CT scan Feb. 11.
Somehow this is all starting to settle in and not causing me to panic anymore. I'm getting used to it. I'm feeling more confident with the information I've been able to find, and the realization that the more informed I am, the more I can advocate for Dave to get the care he needs.
We met with Dr. B today. It has now been six months since diagnosis. She spent over an hour with us. She is always so generous with her time and we never feel we are being rushed out of there. Dave completed the SAGE test in the waiting room. This is a tool developed by OSU to gauge dementia and cognitive decline. His score was significantly lower this time - a 9 vs 15 at his last visit. It is hard to know how much of the decline is the FTD and how much is the fall and the chronic subdural hematoma recurrence. So in fact he may not be asymptomatic with regard to the hematoma. I was very aware of the trouble he was having completing the paperwork, when in the past it has not been much of a challenge. It was the first definitive indication of something - just not certain of what. Dr. B indicated a second opinion regarding the subdural hematoma management was not out of line, especially when dealing with the brain. She works with three neurosurgeons right there in her group and will ask them to take a look at the CT scans. It seems it would be practical to go with one of the neurosurgeons in her office as communication between the two would be instantaneous. Though the FTD and the management of the CSDH are two different issues, they certainly are intertwined. It would also be comfortable as we really like and trust Dr. B. The other neurologist involved in this, Dr. L, is a seizure specialist. Dr. B and she are in the same practice also, though at different locations. They know each other well, so that lends itself to coordination of care on these matters. It sounds like this CSDH will resolve itself. Our plan for now is to see Dr. G, the neurosurgeon who has done the previous surgeries, next Wednesday for another CT scan and go from there unless I hear from Dr. B's office that there are other options.
Dave has gone back to exercising at the senior center three times a week for now. He is only going for half an hour. Once again, when I went to pick him up after the first time, the folks there were so glad to see him! They had sent three cards over the last month, telling him they were thinking of him and to get well soon. I got teary eyes. I am so thankful for them all. They accept him as he is, and enjoy his talking in Spanish - he has Spanish names for all of them - talks loud - has them all laughing and enjoying themselves while they exercise. It is great! We met with an attorney to take care of power of attorney, healthcare power of attorney, and wills. I'm looking into a grant available through our county for caregivers, hoping to get Dave into adult day care maybe two days a week to see how that goes. I'm going back to work tomorrow, at least part time for now, as the afternoons are still spent helping take care of my dad. So the rest of this week will feel a little more routine. I work just a few minutes from home, so if Dave has any troubles, he can easily call me. I'll check on him mid-day, and then be down the street at my dad's. We'll see how this goes - then next week, if he has surgery again, we'll be back to a different routine for a week or so - and then, adjust to a new routine again. I think I'm actually looking forward to getting back to work! I know there's a lot waiting for me - and a few days from now, I'll probably be looking forward to another switcheroo! But I know what's happening tomorrow. I could get used to that.
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