Wow! I am honored, thrilled and grateful to have Forever a Caregiver chosen as the October Book of the Month Club pick on Caregiving.com.
Denise Brown, founder of Caregiving.com, will talk with me about the book tomorrow (Tuesday, October 25) at 12:00 p.m. PDT. You can listen here.
Forever a Caregiver is a book that took me ten years to write but was actually a lifetime in the making. (Still – 10 years? Sheesh!). Denise was one of the many people who encouraged me to publish this book and who ignored my disclaimers along the way (I can be quite persistent with my disclaimers). I am very grateful to Denise, my family and friends for helping me see this book through to completion and publication instead of indulging the coward in me and letting me safely keep it to myself. My hope is that others will see their own family experiences in this book and find acceptance of their family roles and experiences.
Now that I actually know what caregiving is, I realize I was born into this caregiving role. Everyone has family roles and mine happens to be the one where I take care of people. Maybe it’s the control freak in me but I enthusiastically accept this role although, I admit, it was not always something I wanted to do. As a teenager, keeping a watchful eye on Mom so she didn’t sink further into depression (and attempt suicide again) was not something I would have volunteered to do or wish on anyone else for that matter. Yet it was one of many experiences that I accepted, managed to get through and which I actually appreciate for making me the person I am today.
“Appreciate” may seem an odd word choice but I wouldn’t want to be anyone else and those experiences helped shape who I am. For me, appreciating these family experiences (and family itself) is the perfect word.
That complete acceptance of my experiences made me a better caregiver to Mom when she was terminally ill twelve years ago and helps me be the best caregiver I can be to Robert today. Don’t misunderstand – caregiving is not easy and it certainly isn’t always (or even mostly) roses and butterflies and lollipops but taking care of family is what fulfills me and I wouldn’t have it any other way. Call me crazy!
Please recommend this book to anyone who finds themselves in a caregiving role or who has struggled with accepting some of the mess that comes with being a part of a family. I'd love it if you listened tomorrow too!
Monday, October 24, 2011
Friday, October 21, 2011
25 Random Facts About Robert’s Sister (yeah, that’s me)
The other day I posted 25 Random Facts about Robert and promised a few random facts about me too. Random facts in random order. I wonder how many of these are a surprise to my friends and family?
1. When I was 13 I had a pencil thrown at me by a little girl I was babysitting and the lead end was briefly stuck in my eye. (What is it about my family and getting poked in the eye? Obviously, Mom should have made us all wear protective eyewear).
2. I have two younger brothers. Robert is 5 years younger than me, is disabled and has epilepsy. Other Brother is not quite 2 years younger than me and is a very successful partner in an actuarial firm. Robert beats us both at cards.
3. I had heart surgery when I was 18 months old to repair a hole in my heart that I had been born with. My daughter had a similar problem when she was born and had her heart surgery when she was only 2 months old.
4. I still have a few baby teeth and I never got any wisdom teeth. (No comments from the peanut gallery, please). :-)
5. I volunteered at the Suicide Prevention Center when I was 18 years old even though their minimum age to volunteer was 21. I was able to talk my way into the job (if you read my book, you'll know why).
6. During college, I worked for Greenpeace soliciting donations door to door and was yelled at numerous times. My favorite thing yelled at me was “nuke the whales!” People can be crazy!
7. I failed beginning French in college and now worry how I’ll manage to get around when I go to France one of these days.
8. I had two majors in college: Psychology & Peace/War Studies. I thought working at the UN would have been a pretty cool job.
9. In my twenties, I acted in local theater productions and was an extra in a few movies and television shows. It was a blast!
10. Until the 6th grade, I was called Patti. I decided I didn’t like that name any longer so asked everyone to start calling me Tricia. Now it’s just Trish.
11. I really like cows. It may have something to do with the fact I grew up in Nebraska.
12. One of the houses I grew up in was across the street from the famous Boys’ Town farm in Omaha. We could smell the “fertilizer” when the wind shifted.
13. I love making snow angels.
14. I love animals and currently have 2 dogs, 2 cats and an aquatic turtle.
15. I was the oldest and only girl cousin on my dad’s side of the family until I was 12. This meant I wasn’t afraid of boys and could hold my own in a game of touch football.
16. The smoke alarm usually goes off when I cook something. My mom gave me a fire extinguisher as a present once.
1. When I was 13 I had a pencil thrown at me by a little girl I was babysitting and the lead end was briefly stuck in my eye. (What is it about my family and getting poked in the eye? Obviously, Mom should have made us all wear protective eyewear).
2. I have two younger brothers. Robert is 5 years younger than me, is disabled and has epilepsy. Other Brother is not quite 2 years younger than me and is a very successful partner in an actuarial firm. Robert beats us both at cards.
3. I had heart surgery when I was 18 months old to repair a hole in my heart that I had been born with. My daughter had a similar problem when she was born and had her heart surgery when she was only 2 months old.
4. I still have a few baby teeth and I never got any wisdom teeth. (No comments from the peanut gallery, please). :-)
5. I volunteered at the Suicide Prevention Center when I was 18 years old even though their minimum age to volunteer was 21. I was able to talk my way into the job (if you read my book, you'll know why).
6. During college, I worked for Greenpeace soliciting donations door to door and was yelled at numerous times. My favorite thing yelled at me was “nuke the whales!” People can be crazy!
7. I failed beginning French in college and now worry how I’ll manage to get around when I go to France one of these days.
8. I had two majors in college: Psychology & Peace/War Studies. I thought working at the UN would have been a pretty cool job.
9. In my twenties, I acted in local theater productions and was an extra in a few movies and television shows. It was a blast!
10. Until the 6th grade, I was called Patti. I decided I didn’t like that name any longer so asked everyone to start calling me Tricia. Now it’s just Trish.
11. I really like cows. It may have something to do with the fact I grew up in Nebraska.
12. One of the houses I grew up in was across the street from the famous Boys’ Town farm in Omaha. We could smell the “fertilizer” when the wind shifted.
13. I love making snow angels.
14. I love animals and currently have 2 dogs, 2 cats and an aquatic turtle.
15. I was the oldest and only girl cousin on my dad’s side of the family until I was 12. This meant I wasn’t afraid of boys and could hold my own in a game of touch football.
16. The smoke alarm usually goes off when I cook something. My mom gave me a fire extinguisher as a present once.
Thursday, October 20, 2011
Ask and You Shall Receive!
When New Home told me they no longer had television I wondered how Robert was going to fulfill his spiritual needs. Robert is in the habit of watching sermons on television and will actually watch a couple of hours’ worth on Sunday morning if he has the opportunity. He always wears a white dress shirt on Sunday, keeps his Bible close to him along with a pad of paper and pen so he can write down each verse referenced in the sermon. Robert does this whether he is watching a sermon on television, in person or at a funeral. He has several pads of paper filled with Bible verse references.
Sometimes I can get too caught up in the antics of New Home and end up being a little down in the dumps or extremely frustrated with them. New Home promised weeks ago to reinstate television and I keep hearing “it’ll be any day now” but nothing seems to be happening. The residents are still watching the same movies over and over again (luckily, the DVD player works). Robert had a few movies of his own that he shared with the others. Still, how many times can you watch Annie?
This latest problem of not having television is less of a problem now thanks to the generosity of a few churches.
At a recent meeting with New Home, it was suggested that churches might be willing to donate a DVD of their sermons to Robert. Excellent idea! I researched several of the big name churches who broadcast on Sunday to see if they had an avenue to request a donation of a DVD or just had an email address listed on their website. A few churches didn’t have a person to email directly but had a form to complete in order to ask a question or make a request. Many of these links didn’t work which was a little startling. (Hopefully, someone who is in dire straights doesn’t decide to email these particular churches. “I’m so sorry but God’s internet isn’t working right now!”).
To those I could get through to, I requested a DVD of a sermon and promised a mention on my blog if they were willing to donate the DVD to Robert. I explained his situation and asked for whatever they could send. One church turned me down and instead asked me for a donation.
Not letting this discourage me, I sent off a few more emails. Two churches responded positively and have already sent a few gifts to Robert! The Joel Osteen Ministries of Lakewood Church in Texas, sent Robert a DVD entitled, “You are an Overcomer.” Boy, isn’t that the truth! I told Robert he was sent a DVD but haven’t given it to him yet. He gave his standard understated response of “That’s nice” when I told him about it. He may not be able to ooze enthusiasm but he will watch it intently (and probably several times), Bible beside him with notepad in hand.
InTouch Ministries also generously sent Robert two CDs with sermons by Dr. Charles Stanley. When Robert visits us, he watches Dr. Stanley’s program so will really appreciate having these CDs to listen to.
New Home may be on week 4 and counting of trying to get their television back on but while they move at a snail’s pace to get the necessary approvals and wait for the cable guy, a few churches have come to Robert’s rescue and made him very happy. For that, I am extremely grateful!
Sometimes I can get too caught up in the antics of New Home and end up being a little down in the dumps or extremely frustrated with them. New Home promised weeks ago to reinstate television and I keep hearing “it’ll be any day now” but nothing seems to be happening. The residents are still watching the same movies over and over again (luckily, the DVD player works). Robert had a few movies of his own that he shared with the others. Still, how many times can you watch Annie?
This latest problem of not having television is less of a problem now thanks to the generosity of a few churches.
At a recent meeting with New Home, it was suggested that churches might be willing to donate a DVD of their sermons to Robert. Excellent idea! I researched several of the big name churches who broadcast on Sunday to see if they had an avenue to request a donation of a DVD or just had an email address listed on their website. A few churches didn’t have a person to email directly but had a form to complete in order to ask a question or make a request. Many of these links didn’t work which was a little startling. (Hopefully, someone who is in dire straights doesn’t decide to email these particular churches. “I’m so sorry but God’s internet isn’t working right now!”).
To those I could get through to, I requested a DVD of a sermon and promised a mention on my blog if they were willing to donate the DVD to Robert. I explained his situation and asked for whatever they could send. One church turned me down and instead asked me for a donation.
Not letting this discourage me, I sent off a few more emails. Two churches responded positively and have already sent a few gifts to Robert! The Joel Osteen Ministries of Lakewood Church in Texas, sent Robert a DVD entitled, “You are an Overcomer.” Boy, isn’t that the truth! I told Robert he was sent a DVD but haven’t given it to him yet. He gave his standard understated response of “That’s nice” when I told him about it. He may not be able to ooze enthusiasm but he will watch it intently (and probably several times), Bible beside him with notepad in hand.
InTouch Ministries also generously sent Robert two CDs with sermons by Dr. Charles Stanley. When Robert visits us, he watches Dr. Stanley’s program so will really appreciate having these CDs to listen to.
New Home may be on week 4 and counting of trying to get their television back on but while they move at a snail’s pace to get the necessary approvals and wait for the cable guy, a few churches have come to Robert’s rescue and made him very happy. For that, I am extremely grateful!
Monday, October 17, 2011
25 Random Things About Robert
One of my favorite bloggers who is also an amazingly talented artist, Franziska San Pedro, recently created a “25 Random Things About Me” post. It was entertaining (mostly because it involved donkeys), it was very open (read it and you’ll see what I mean), and it was enlightening. I learned so much about this delightfully exuberant person in just five minutes!
I’d love for you to know more about Robert and this list is the perfect way to do that. (I promise to create something similar about myself but for now, this is all about Robert).
1. Robert stuck a fork in his eye when he was 6 or 7. Other Brother, Robert and I were having a picnic in our backyard and Robert was goofing around and stuck himself with a fork. He thought the eye patch he got from the ER was pretty cool! (Don’t worry, there wasn’t any permanent damage).
2. Robert’s favorite color is blue.
3. Robert’s favorite television shows are Wheel of Fortune and Jeopardy. Of the two, he likes Jeopardy the best.
4. Robert is very committed to his faith and considers himself Baptist. I know of no other Baptists in our family.
5. Robert has had epilepsy his entire life.
6. When living independently, Robert sent money to someone in Jamaica because they called him and asked him for it. I am still wishing for Karmic justice on this person for taking advantage of a disabled person.
7. As a child, Robert loved to play with LEGOs.
8. Robert can tell you all about being awake during his brain surgery in 1990 and how happy the surgeon was with him and his progress afterwards. He usually can’t remember what he had for lunch.
9. Robert had a seizure while in a swimming pool when he was 15. After being pulled out, he was in a coma for a few days and says God talked to him telling him it wasn’t his time yet. It certainly wasn’t!
10. Robert’s favorite meal is a cheeseburger and fries with Rocky Road ice cream for dessert.
11. Robert says he can sometimes fight off seizures. I believe him.
12. Robert’s medications currently include Depakote, Clonazepam and Zonisamide (for seizure control) and Levocarnitine to improve liver function.
13. When Robert was little he loved to carry around a blanket (the kind with the silk on the edge) and just rub the silk. It was very soothing for him.
14. Robert always wears button down, dress shirts. Preferably blue.
15. Robert loves 7-Up and is never without a bottle of it.
16. Robert can’t drink caffeine because it may trigger a seizure but he likes decaf coffee.
17. Robert enjoys doing Word Search puzzles.
18. When in the car or riding the bus home from his Day Program, Robert counts school buses and “diesel trucks.”
19. My parents took Robert to Switzerland when he was 8 to see a renowned neurosurgeon to see if he could cure Robert’s epilepsy with surgery. The doctor couldn’t do anything.
20. Robert’s best friend in elementary school was run over by a bus in our neighborhood. It was a horrible, awful thing.
21. Robert lived with a woman he considered to be his wife for almost twenty years. She also had epilepsy. When Robert could no longer live on his own and I moved him to a facility near me, she broke up with him.
22. Robert loves jewelry (rings, watch, bracelet, necklace with a cross) and wants everything to be 14-carat gold.
23. Robert is very routine-oriented, bordering on OCD.
24. Robert absolutely loves to play Kings Corner (a card game) and beats me 99% of the time.
25. Robert is the only one in the family with curly hair. I always wondered what the mailman looked like. :-)
I'd love to hear a few random things about you if you'd like to share in the comment section!
I’d love for you to know more about Robert and this list is the perfect way to do that. (I promise to create something similar about myself but for now, this is all about Robert).
1. Robert stuck a fork in his eye when he was 6 or 7. Other Brother, Robert and I were having a picnic in our backyard and Robert was goofing around and stuck himself with a fork. He thought the eye patch he got from the ER was pretty cool! (Don’t worry, there wasn’t any permanent damage).
2. Robert’s favorite color is blue.
3. Robert’s favorite television shows are Wheel of Fortune and Jeopardy. Of the two, he likes Jeopardy the best.
4. Robert is very committed to his faith and considers himself Baptist. I know of no other Baptists in our family.
5. Robert has had epilepsy his entire life.
6. When living independently, Robert sent money to someone in Jamaica because they called him and asked him for it. I am still wishing for Karmic justice on this person for taking advantage of a disabled person.
7. As a child, Robert loved to play with LEGOs.
8. Robert can tell you all about being awake during his brain surgery in 1990 and how happy the surgeon was with him and his progress afterwards. He usually can’t remember what he had for lunch.
9. Robert had a seizure while in a swimming pool when he was 15. After being pulled out, he was in a coma for a few days and says God talked to him telling him it wasn’t his time yet. It certainly wasn’t!
10. Robert’s favorite meal is a cheeseburger and fries with Rocky Road ice cream for dessert.
11. Robert says he can sometimes fight off seizures. I believe him.
12. Robert’s medications currently include Depakote, Clonazepam and Zonisamide (for seizure control) and Levocarnitine to improve liver function.
13. When Robert was little he loved to carry around a blanket (the kind with the silk on the edge) and just rub the silk. It was very soothing for him.
14. Robert always wears button down, dress shirts. Preferably blue.
15. Robert loves 7-Up and is never without a bottle of it.
16. Robert can’t drink caffeine because it may trigger a seizure but he likes decaf coffee.
17. Robert enjoys doing Word Search puzzles.
18. When in the car or riding the bus home from his Day Program, Robert counts school buses and “diesel trucks.”
19. My parents took Robert to Switzerland when he was 8 to see a renowned neurosurgeon to see if he could cure Robert’s epilepsy with surgery. The doctor couldn’t do anything.
20. Robert’s best friend in elementary school was run over by a bus in our neighborhood. It was a horrible, awful thing.
21. Robert lived with a woman he considered to be his wife for almost twenty years. She also had epilepsy. When Robert could no longer live on his own and I moved him to a facility near me, she broke up with him.
22. Robert loves jewelry (rings, watch, bracelet, necklace with a cross) and wants everything to be 14-carat gold.
23. Robert is very routine-oriented, bordering on OCD.
24. Robert absolutely loves to play Kings Corner (a card game) and beats me 99% of the time.
25. Robert is the only one in the family with curly hair. I always wondered what the mailman looked like. :-)
I'd love to hear a few random things about you if you'd like to share in the comment section!
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