I had to take dh to his cardiologist's appointment today. Back when we were trying to get his FTD diagnosed, his heart stopped. Stopped. Dropped in the kitchen. So, called 911, took him to the hospital. They did a full cardiac work up, stitched up his head, admitted him for observation. He has NO heart disease what so ever. Perfectly healthy heart just stopped. Evidently it happens sometimes. So, they put in a pacemaker and he is fine.
Now we have to visit his cardiologist once a year. Understand, dh is embarrassingly healthy and looks it. He's a little overweight now, for the first time in his life, because of the constant craving for sweets, but other than that, he is healthy as the proverbial hog. So, most people have no idea that he has a problem unless they try to have a conversation with him.
But I know going in what is about to happen. And of course, it always does. The doctor starts asking dh questions, dh starts "telling his stories," I answer the doctor's questions, and I get the "look." Even though I have already reminded the nurse that hubby has a little problem. Even though she has had a heck of a time getting her charting done, because he talks non-stop, as fast as he can, about totally unrelated subjects, and she has finally given up and looked to me for answers. The doctor wants the patient to answer the questions, not the wife. So, I let him go. Hubby tells his current favorite story of the 3000 marines who went into DeNang in 1968. This is a long one. But, I got "the look," so I let the gents work it out themselves. It isn't until dh starts telling the doctor about his license being suspended, that the light bulb goes on and the doctor looks at his computer, then looks at me. I nod. And we finish the visit. We'll repeat this episode again next year. Hubby is still heart disease free and the cardiologist is really very good.
Thank the good Lord, I have the best medical support system I could possibly have. I know that thanks to HIPPA, most doctors have stopped talking to family members at all. Our PCP is a true treasure. She takes care of me, dh, my mom and my sister and knows the whole family circumstance. She treats dh with such compassion and respect and yet understands that she and I have to be a team so that he gets the best care we can both give.
I have been incredibly blessed throughout this circumstance and I don't doubt it for a moment. Yes, we are dealing with a horrible disease and yes, every one in my family is suffering because of it. But, every need has been provided in ways I could never imagine. Thank you, God
PS - in case you get the wrong idea - I'm the one playing the fool role today!
Wednesday, February 22, 2012
Tuesday, February 21, 2012
Diagnosis
As we were remodeling the house, more and more examples of the changes that were happening with dh became obvious. One day we were replacing door hardware and he told me that he had to take all the doorknobs back because none of them fit together right. I took a look, put the hardware together, and installed them on the door. He was amazed and completely stunned. "How did you DO that?" I glossed over the situation, but it was disturbing. Many days he wouldn't be able to complete anything while I was busy painting. He made repeated trips daily to the hardware store to pick up 1 item at a time. He would disappear every time we went to the store and I'd have to hunt him down. Odd behaviors were piling up in my mind, but I pushed them back as long as we were working and living in our "project" home.
After we were finished with the remodel, I tried to talk to him about the odd things I had noticed. This was after we got the results from the neurophych back in Oklahoma. He became furious and refused to speak to me. That was when I realized that he was probably very concerned about himself. It is also when I demanded that we find another doctor to do an assessment for us. I should mention at this time that he has a family history of Alzheimer's. His mother was diagnosed with Alz back in the 70's, his brother was diagnosed with Alz in the 90's, and then we found out that his sister had also been diagnosed with "dementia" about the same time.
It took months to get into see the specialist who was recommended to us. She did the original assessment and we had a family conference. This is the first time we heard the words FrontoTemporal Dementia. But she wouldn't commit to that diagnosis and wanted to do more testing. Dh had a PET scan to see what parts of his brain were active and which were not as active. He also had a spinal tap to look for "Tau" in his spinal fluid. The presence of Tau would indicate a form of Alzheimer's. Finally, he had more blood work done than I ever knew existed. He was tested for Legionnaire's disease, Lupus, viral, bacterial, and fungal infections, Lyme Disease, Creutzfeldt Jakob, West Nile and Fragile X. Some I had heard of in the news; others I had never heard of. When we met again, the diagnosis was certain. FTD. Then the doctor said, "Do you have any questions?" What! We didn't know enough to ask any questions. Her general overview included that FTD was progressive, degenerative, not treatable, and would "shorten" his lifetime. She also told us about the symptoms when you lose the Frontal and Temporal parts of the brain. We were all in shock. Except for dh. He just smiled and sat through the entire thing without a question. Later I asked him what he thought about what the doctor had told us. He said he thought she was quite nice. (She was)
We came home and I cried. Then I started looking for information. There wasn't much. I looked at WebMD, Mayo clinic website, Googled constantly. It wasn't good news. I kept reading rare, little research, etc. This was September 2010. I also got a lot of floral info - FTD, you know. But I found a few sites, a couple of universities that had started researching FTD. Each site led another step forward. Now, I'm happy to say that there are a great many websites and organizations who support families who are looking for info about FrontoTemporal Dementia.
If you are reading this and need information start at theaftd.org It will direct you to many other places where you will find information and people who care and are also going through the same thing you are. They have been a lifesaver for me..
After we were finished with the remodel, I tried to talk to him about the odd things I had noticed. This was after we got the results from the neurophych back in Oklahoma. He became furious and refused to speak to me. That was when I realized that he was probably very concerned about himself. It is also when I demanded that we find another doctor to do an assessment for us. I should mention at this time that he has a family history of Alzheimer's. His mother was diagnosed with Alz back in the 70's, his brother was diagnosed with Alz in the 90's, and then we found out that his sister had also been diagnosed with "dementia" about the same time.
It took months to get into see the specialist who was recommended to us. She did the original assessment and we had a family conference. This is the first time we heard the words FrontoTemporal Dementia. But she wouldn't commit to that diagnosis and wanted to do more testing. Dh had a PET scan to see what parts of his brain were active and which were not as active. He also had a spinal tap to look for "Tau" in his spinal fluid. The presence of Tau would indicate a form of Alzheimer's. Finally, he had more blood work done than I ever knew existed. He was tested for Legionnaire's disease, Lupus, viral, bacterial, and fungal infections, Lyme Disease, Creutzfeldt Jakob, West Nile and Fragile X. Some I had heard of in the news; others I had never heard of. When we met again, the diagnosis was certain. FTD. Then the doctor said, "Do you have any questions?" What! We didn't know enough to ask any questions. Her general overview included that FTD was progressive, degenerative, not treatable, and would "shorten" his lifetime. She also told us about the symptoms when you lose the Frontal and Temporal parts of the brain. We were all in shock. Except for dh. He just smiled and sat through the entire thing without a question. Later I asked him what he thought about what the doctor had told us. He said he thought she was quite nice. (She was)
We came home and I cried. Then I started looking for information. There wasn't much. I looked at WebMD, Mayo clinic website, Googled constantly. It wasn't good news. I kept reading rare, little research, etc. This was September 2010. I also got a lot of floral info - FTD, you know. But I found a few sites, a couple of universities that had started researching FTD. Each site led another step forward. Now, I'm happy to say that there are a great many websites and organizations who support families who are looking for info about FrontoTemporal Dementia.
If you are reading this and need information start at theaftd.org It will direct you to many other places where you will find information and people who care and are also going through the same thing you are. They have been a lifesaver for me..
Sunday, February 19, 2012
Our story continues.........
The first half of this story is on the previous post.
So the next little bit gets a little involved and confusing. Hang with me or skip it.
The week after dh retired we drove from our home to Oklahoma for the 4th of July. At that time, our daughter (hereby known as dd - you got it, darling daughter) was married with 2 children to a horribly abusive and scary man. The 4th of July became known as her Independence Day (still celebrated with fireworks!) when she took the kids, ages 2 and 3, and disappeared. We had no idea where she was and were in a panic. After a couple of days, we found out she was in a shelter and basically in hiding from the husband. Not to get into details, I ended up staying with her in an apartment to get her stabilized and help her to get the divorce proceedings started and to take care of the kids while she worked. One week followed another until 3 months had passed and I was ready to go home. Her little boy, my sweetest little 3 year old sidekick and buddy, needed his tonsils out, so I decided to stay until he was feeling better. This was around middle of October. He had his surgery, we brought him home late that afternoon, fed him jello and he was doing fine, a little groggy. Pretty normal following his day in the OR. The next morning we woke to find that he had passed away in the night. Eventually we found out that he had passed away due to a combination of codeine overdose and sensitivity to the codeine. That same week another little boy, 7 years old, died of an overdose from the same hospital following a removal of an ingrown toenail. Sad, sad time. Needless to say, I ended up staying with dd until December.
While I was still there, dh called me from a golf trip he had taken with a bunch of the good, ole retired guys. He told me to go look at houses on a PGA golf course in the town we lived in when the older kids were growing up. I really wasn't interested, but we had always enjoyed looking at model homes and had done a lot of house hunting due to moving frequently for dh job. So off I went. I thought he was just interested in what was going on in that area since it had been 15 years or more since we lived there. We talked later and he asked if there were any houses that we might enjoy. I said, sure. He said, Buy it. Just like that. I figured he was just blowing hot air in front of his buds (he had started boasting to people and inflating our financial position a little by that time. It embarrassed me. But I figured it was a midlife crisis or some such). I told him no, that if he was so interested, come buy it yourself. And he did. I didn't know what to think, but I had always trusted him and he didn't always give reasons for his actions, but he was seldom wrong. I was still reeling from the sudden death of our grandson and I had also lost my Dad suddenly the previous year. I was off balance and just let him run with it. My newly widowed mother and my disabled sister lived in Oklahoma also and were struggling. Our dd was still in the middle of a nasty divorce. Our oldest son had 2 beautiful little girls we wanted to be closer to. So it made a certain sense to move to Oklahoma from Michigan to help take care of all of the family. So, we wrote a contract on the OK house and came home and put our dream home on the market. I cried.
I put some conditions on the move. Both of our younger sons were getting married summer of 2005, and I told him I would not move until after the weddings. Telling my sons that we were leaving and moving back to Oklahoma was one of the hardest things I ever did. They couldn't understand it. Neither could I. I couldn't help them understand what I didn't understand. We bought the house in OK and listed it to rent until after the weddings. The housing bubble burst in Mi, and we had a terrible time trying to sale our home. But we finally sold it (at a loss) and in October we packed up a truck and moved all our stuff 1000 miles from my heart's home. I drove our truck and cried all the way to the door of our beautiful new home. During the moving process another little clue to the growing problem with my dh happened. He was taking a treadmill we didn't want to the second hand sports store to sell. After a while, he came back with a sheepish grin. The treadmill had fallen out of the truck and broke up all over the road. I was too busy to think about it. He had put the treadmill in the truck standing up and not even strapped it in! What! This from a guy who never made stupid mistakes.
And we lived unhappily ever after. Just kidding! We lived in Oklahoma for 2 years. I developed severe respiratory symptoms and was miserable and very sick. My Mom, bless her God loving heart, told me that if I wanted to move back to MI, she and my sister would also move to MI to be with us. Talk about God providing! (Even though I didn't know at that time how much I was going to need them.) We sold the house in Oklahoma, losing even more money, and bought a foreclosed home in the community we had left in MI. Not in the planned community I loved, but on a busy street next to our huge high school. When our youngest son saw the house as it was, he said, you have lost your minds! Little did he know that, indeed, we were fast traveling down that very road. The house was a foreclosure and was trashed, but it met most of our needs and we could afford it. And we had always wanted to "flip" a house. And dh said he loved it.
Symptoms of FTD kept popping up while we were in Oklahoma. Of course, I didn't have a clue about this disease. Mostly I was confused. My dh was slowly becoming a different man. He bragged nonstop about one son to any one who stood still. He became very gregarious and friendly with the neighbors and strangers (not a bad thing in and of itself, but different for him) He continued to brag about our imaginary financial situation. He contracted to work at one of the plants to do due diligence for a company who was considering buying it, but he told me non-stop stories praising the woman he was working with. Good grief! Usually when a guy gets enamored with another woman, he doesn't tell his wife about it! He didn't get me a gift for my 50 birthday, even though my Mom was throwing me a surprise birthday party and flying in our two sons. He was no longer the loving partner that I had enjoyed. Mostly, he ignored me. I thought we had severe marital problems and was considering leaving. But then one day he couldn't use the remote to the tv. And another day he wasn't able to program the sprinkler system. His behavior was getting more and more erratic. I talked to our family doctor about my concerns and she agreed to talk to him and see if he would agree to a NeuroPsychological evaluation. To my surprise, he actually agreed. I wasn't surprised when he refused to let me go with him or to meet the doctor. By the time the test results were in, we had moved back to MI. He ignored several phone calls from the NeuroPsych to receive the test results. Finally I forced him to call, the dr mailed the test results and had a phone conference with dh - which he took in an upstairs bedroom with the door closed and wouldn't let me in. But I got hold of the paperwork and read it and realized "Houston, we have a problem!" In a nutshell, the dr said he was either lying (about previous employment) or something was definitely wrong. Dh executive skills were not sufficient for him to manage anything. He also said that without a discussion with his wife, he couldn't make any kind of diagnosis, but he recommended repeat testing in 2 years.
So the next little bit gets a little involved and confusing. Hang with me or skip it.
The week after dh retired we drove from our home to Oklahoma for the 4th of July. At that time, our daughter (hereby known as dd - you got it, darling daughter) was married with 2 children to a horribly abusive and scary man. The 4th of July became known as her Independence Day (still celebrated with fireworks!) when she took the kids, ages 2 and 3, and disappeared. We had no idea where she was and were in a panic. After a couple of days, we found out she was in a shelter and basically in hiding from the husband. Not to get into details, I ended up staying with her in an apartment to get her stabilized and help her to get the divorce proceedings started and to take care of the kids while she worked. One week followed another until 3 months had passed and I was ready to go home. Her little boy, my sweetest little 3 year old sidekick and buddy, needed his tonsils out, so I decided to stay until he was feeling better. This was around middle of October. He had his surgery, we brought him home late that afternoon, fed him jello and he was doing fine, a little groggy. Pretty normal following his day in the OR. The next morning we woke to find that he had passed away in the night. Eventually we found out that he had passed away due to a combination of codeine overdose and sensitivity to the codeine. That same week another little boy, 7 years old, died of an overdose from the same hospital following a removal of an ingrown toenail. Sad, sad time. Needless to say, I ended up staying with dd until December.
While I was still there, dh called me from a golf trip he had taken with a bunch of the good, ole retired guys. He told me to go look at houses on a PGA golf course in the town we lived in when the older kids were growing up. I really wasn't interested, but we had always enjoyed looking at model homes and had done a lot of house hunting due to moving frequently for dh job. So off I went. I thought he was just interested in what was going on in that area since it had been 15 years or more since we lived there. We talked later and he asked if there were any houses that we might enjoy. I said, sure. He said, Buy it. Just like that. I figured he was just blowing hot air in front of his buds (he had started boasting to people and inflating our financial position a little by that time. It embarrassed me. But I figured it was a midlife crisis or some such). I told him no, that if he was so interested, come buy it yourself. And he did. I didn't know what to think, but I had always trusted him and he didn't always give reasons for his actions, but he was seldom wrong. I was still reeling from the sudden death of our grandson and I had also lost my Dad suddenly the previous year. I was off balance and just let him run with it. My newly widowed mother and my disabled sister lived in Oklahoma also and were struggling. Our dd was still in the middle of a nasty divorce. Our oldest son had 2 beautiful little girls we wanted to be closer to. So it made a certain sense to move to Oklahoma from Michigan to help take care of all of the family. So, we wrote a contract on the OK house and came home and put our dream home on the market. I cried.
I put some conditions on the move. Both of our younger sons were getting married summer of 2005, and I told him I would not move until after the weddings. Telling my sons that we were leaving and moving back to Oklahoma was one of the hardest things I ever did. They couldn't understand it. Neither could I. I couldn't help them understand what I didn't understand. We bought the house in OK and listed it to rent until after the weddings. The housing bubble burst in Mi, and we had a terrible time trying to sale our home. But we finally sold it (at a loss) and in October we packed up a truck and moved all our stuff 1000 miles from my heart's home. I drove our truck and cried all the way to the door of our beautiful new home. During the moving process another little clue to the growing problem with my dh happened. He was taking a treadmill we didn't want to the second hand sports store to sell. After a while, he came back with a sheepish grin. The treadmill had fallen out of the truck and broke up all over the road. I was too busy to think about it. He had put the treadmill in the truck standing up and not even strapped it in! What! This from a guy who never made stupid mistakes.
And we lived unhappily ever after. Just kidding! We lived in Oklahoma for 2 years. I developed severe respiratory symptoms and was miserable and very sick. My Mom, bless her God loving heart, told me that if I wanted to move back to MI, she and my sister would also move to MI to be with us. Talk about God providing! (Even though I didn't know at that time how much I was going to need them.) We sold the house in Oklahoma, losing even more money, and bought a foreclosed home in the community we had left in MI. Not in the planned community I loved, but on a busy street next to our huge high school. When our youngest son saw the house as it was, he said, you have lost your minds! Little did he know that, indeed, we were fast traveling down that very road. The house was a foreclosure and was trashed, but it met most of our needs and we could afford it. And we had always wanted to "flip" a house. And dh said he loved it.
Has it really been 9 years?
I've already been living this disease for 9 years! It is just unbelievable to me. Along the way I have experienced so many things in our relationship that I didn't understand at the time. But now, viewed under the microscope of FrontoTemporal Dementia, I understand better. I don't think you can ever truly understand what this disease does to the you until you live it. I've decided to write this blog for 2 reasons - both pretty selfish. First, I don't really want to forget all that has happened and the road we have been traveling. I've found that the stress of care giving is turning my memory into a colander. Second, I want to journal the road we are currently traveling. I don't know if any one will ever want to read any of this - thus the selfish aspect of it.
There is so little known about FTD. When we got the diagnosis, I immediately got on the computer trying to find out as much as I could. At the time there just wasn't much available, but I found two sites that continue to be my life line - AFTD.com and the spouse support yahoo group. Since there is so little actually documented about the progression of the disease, other people going through the same thing provides me with more answers than I can get anywhere else. Even our doctor (who is excellent) won't hazard a guess about time lines of progression.
So here I am. I've never journaled before, but I hope that I can spend a little time each day telling our story.
An introduction. My husband (to be known from this point as dh, dear husband) and I have been married 37 years this July. We blended together a family of 4 children - 2 from his first marriage and 2 sons from ours. The kids all grew up together in our household. We have been blessed with 7 grandchildren - 4 beautiful girls and 3 rambunctious boys. My dh worked his way up the ranks over the years to become area manager for several glass plants and was well respected in the industry. Very intelligent man. Holds a degree in microbiology. No slouch there. He has always been a very reserved, quiet, a perfectionist. I'm not bragging - just want to share where we came from before this disease struck.
I stayed home and raised our children and loved it. Dh job brought us to Michigan in 1996. We have 2 children and their families still in Oklahoma, where we were raised. One son and his family live here in Michigan and our youngest son and his wife live in Washington state.
We planned well for our retirement years and looked forward to them. We were going to travel; visiting our family and enjoying our grandchildren. In 2002 we had a house built that was to be our retirement home. We loved it. It looked like the Victorian we always wanted, but was new construction. It was in a planned community with parks, walking paths, close neighbors, even a town center. June 30, 2003, my dh retired after 29 years with the company. Life was good.
I hope I'm not just boring you to death. Remember, I'm writing this as much for myself as any thing else. This is all background, but it leads up to the small, subtle, and some not so subtle things that happened to let me know that something was going very wrong.
There is so little known about FTD. When we got the diagnosis, I immediately got on the computer trying to find out as much as I could. At the time there just wasn't much available, but I found two sites that continue to be my life line - AFTD.com and the spouse support yahoo group. Since there is so little actually documented about the progression of the disease, other people going through the same thing provides me with more answers than I can get anywhere else. Even our doctor (who is excellent) won't hazard a guess about time lines of progression.
So here I am. I've never journaled before, but I hope that I can spend a little time each day telling our story.
An introduction. My husband (to be known from this point as dh, dear husband) and I have been married 37 years this July. We blended together a family of 4 children - 2 from his first marriage and 2 sons from ours. The kids all grew up together in our household. We have been blessed with 7 grandchildren - 4 beautiful girls and 3 rambunctious boys. My dh worked his way up the ranks over the years to become area manager for several glass plants and was well respected in the industry. Very intelligent man. Holds a degree in microbiology. No slouch there. He has always been a very reserved, quiet, a perfectionist. I'm not bragging - just want to share where we came from before this disease struck.
I stayed home and raised our children and loved it. Dh job brought us to Michigan in 1996. We have 2 children and their families still in Oklahoma, where we were raised. One son and his family live here in Michigan and our youngest son and his wife live in Washington state.
We planned well for our retirement years and looked forward to them. We were going to travel; visiting our family and enjoying our grandchildren. In 2002 we had a house built that was to be our retirement home. We loved it. It looked like the Victorian we always wanted, but was new construction. It was in a planned community with parks, walking paths, close neighbors, even a town center. June 30, 2003, my dh retired after 29 years with the company. Life was good.
I hope I'm not just boring you to death. Remember, I'm writing this as much for myself as any thing else. This is all background, but it leads up to the small, subtle, and some not so subtle things that happened to let me know that something was going very wrong.
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