Monday, September 29, 2014
Chapter 10 "What do you know about this business?" the King said to Alice. "Nothing," said Alice
Another week gone by. Four weeks - almost five since the diagnosis. No real change in Dave that I see. It's more that the deficits seem more obvious. He has now lost his last two hours of work each week doing home health work with one gentleman. I don't think it is reflective of Dave's behavior - I think this was more just a matter of the need for help coming to an end. But now he has four days a week that all he does is watch TV pretty much all day, or play Spider Solitaire on the computer and go to exercise each day. I spent time on the phone last week trying to track down a report on the driving assessment - that was a month ago! The doc's office is going to see about tracking it down for us. One day a week he does his hour of volunteer work. He seems content. I'm kind of jealous!
I bought myself a birthday gift - "Planning for Long-Term Care for Dummies" - some good leisure time reading! Should help me fall asleep at night! We met with an attorney last week. It set the wheels in motion. So many things to consider. Power of attorney. Health care power of attorney. Living will - or no living will. Health care proxy or something like that. The tricky part is how to set things up in the case of my death - and how to make sure what I have in the way of life insurance and my pension savings ends up being used to take care of Dave. I don't think I want to make Dave the direct beneficiary because he wouldn't know what to do with it to make it last. I believe there is a "trust" it could be left in that would preserve it for his care - to continue to pay the mortgage and bills. Or I could just designate one of my children as the beneficiary with their understanding of what it's for. But will that create tax implications for them? And how do I make sure that any money left over at the time of Dave's death goes to all three of my children? I guess that is what we would set up for Dave - first to me, if I'm not around, then to the kids - I don't know what happens with his small retirement that is set up as a monthly benefit that then goes to me at the time of his death - but what if I'm not around? Does that just end? SO MANY THINGS TO FIGURE OUT! Like what about the house? I know we need to make sure it is set up with joint survivorship so it doesn't get caught up in probate, but then what happens? I feel SO ignorant of all this - and it is so complicated. It is certainly an education. I want to make the best use of any time with an attorney - so I figure the more I know, the clearer questions I can ask so as to save time - and money - and feel comfortable with what I'm putting in place. Plus I need to make sure Dave understands what he is setting in place for himself by giving me power of attorney, etc. And I think I'll probably be spending a lot of time on the phone! I have planned to take Fridays off from work for now when I can. I need that week day time to make sure I can make phone calls, be on hold and stay on hold - sounds like fun! Plus it will give me time to plan time with my dad - he seems to have a lot he wants to tell me about my role as executor. So this will let me breathe and get it done. And looking forward to a trip to visit my son and his wife in Florida - I want him to get to spend some time with his dad - I just don't know how this will progress, and we need to make the most of things right now. Dave still doesn't really get that anything is wrong - it continues to amaze me - I've had many conversations with him - but the other night while skyping with my son, I told Dave to tell Mike about his illness, and he basically said nothing was happening. Oh well. That's ok. It's just the way it is.
I'm fortunate to have a good friend I've worked with for thirty years who is the director of our Older Adults program. She is so knowledgeable about the services and resources that are available in central Ohio. She also knows a lot about the ins and outs of Medicare and Medicaid. At my work, we also have a Caregiver program and I can get some good information there. Never dreamed I'd be a consumer of our services!
I also recently have been connected with another central Ohio woman with a husband who has FTD. That has been a gift. She is a friend of my sister's, and now we are friends on Facebook and e-mailing back and forth. Her husband's disease has progressed further then my husband's and he is in a nursing home, so she has been through so much more than I at this point. She has been offering wonderful support, and I can't wait to meet her and talk with her face to face. She is very willing to share her story and experiences, and I am so grateful. It gives me a little perspective on this disease.
FTD Awareness week is October 5 - 12 - the theme is "Food for Thought" - I'm going to make homemade tamales - $18 a dozen - chicken or pork - and sell to family and friends - my sisters and kids are helping - should be fun! Hope to have people pick up on Friday, October 10 and Saturday, October 11. This is my husband's mom's recipe - I've helped her make them many times in the past - she makes them best - but mine are pretty good! I made a practice batch this last weekend and they were GOOD! I've asked for some brochures or some kind of literature to enclose with the food to help educate people about this disease. Feels good to do something.
Saturday, September 20, 2014
Chapter 9 "What is the use of a book," thought Alice, "without pictures or conversations?"
These images I've posted are the scariest to me. They provoke the most thought, the most wondering, the most googling. I wish I understood more about the make up of the brain. The image with the comparison to a normal 80 year old brain looks so horrific. What do the big spaces mean? What particular behavior or process is that affecting? I'd love to show this to a neurologist who didn't know any of Dave's symptoms and ask - what would you expect see in clinical presentation of a person with this particular MRI profile? I don't know if anyone can tell me that.
I've tried googling FTD MRI images - many come up - but it is so hard to know what I'm looking at. A few look similar to my husband's. I'm hoping by posting these that anyone accessing this blog because they also have a loved one with FTD might see something familiar - or something very different then their loved one's MRI. That someone might have a loved one with similar symptoms, but a very different MRI, or similar MRI but very different symptoms. I don't know what difference it would make - other then it might help still the wondering if I can just figure this all out some how - can some how predict based on this one MRI - I want to know what comes next!!! Is there someone who could look at this and say, based on what has atrophied so far, that this is what will likely happen next? My sense is that this disease does what it wants - is fairly random in what might be effected one week to the next. Though these images indicate severe problems to me, does it actually look not so bad for now? And how bad will it get? When I look at it, I feel like he should have more problems in evidence then he is having so far. Maybe it can look so bad and not be producing any physical symptoms that I'm aware of because we supposedly use so little of our brain - maybe part of what has atrophied is a part that isn't used?
I wish I could make a list of symptoms, and then a little map of the brain would light up, showing; what atrophy would be most likely to be apparent with those symptoms. Then I would pick another symptom - like trouble speaking - that will come eventually - and see what lights up - see if it's close to what's already happening - see if it's close to the current edges of what looks like chasms - see if it's next. Or load my husband's MRI into some app that would spit out the symptoms that are likely in evidence with his profile. Wouldn't that be cool? So far, I haven't found any such tool, and I doubt there's one out there. But I'm sure there will be some day.
We finally meet with the attorney briefly this next week - our original appointment got cancelled. We got the bill for the driving assessment - but not the report yet! Our insurance actually covered the assessment - all but $67. Amazing. I'm a little anxious about the report - I know Dave reported he did well, and he hasn't had an accident in several years, but I am beginning to get concerned about it. I guess I could get him a bike - with a basket - and he could still go to the store like he enjoys, and pick up some groceries. He'd have to stop his two hour a week job - and probably have to walk to the senior center where he volunteers once a week washing dishes for an hour or so, and where he goes to exercise six days a week.
If anyone reading this knows anything about MRI's, most especially MRI's of a person with FTD, and you have some insight to offer, I would so appreciate it. Feel free to e-mail me at sorod55@gmail.com, or comment here. Or if you have similar thoughts, concerns, or any reason at all.
I so wish I had a crystal ball. Sometimes I wonder about selling our house if he'll eventually be in a wheel chair - we're in a split level with no bathroom on the main floor. Or if I get some work done in our tiny little master bathroom that no wheel chair would ever fit into, should I go big to plan for the future? Or should I fix things up here and get it ready to sell so we can move into a one level with plenty of room for a wheelchair to maneuver? Ugh. My brain just never stops spinning. So much to consider and ponder.
I've tried googling FTD MRI images - many come up - but it is so hard to know what I'm looking at. A few look similar to my husband's. I'm hoping by posting these that anyone accessing this blog because they also have a loved one with FTD might see something familiar - or something very different then their loved one's MRI. That someone might have a loved one with similar symptoms, but a very different MRI, or similar MRI but very different symptoms. I don't know what difference it would make - other then it might help still the wondering if I can just figure this all out some how - can some how predict based on this one MRI - I want to know what comes next!!! Is there someone who could look at this and say, based on what has atrophied so far, that this is what will likely happen next? My sense is that this disease does what it wants - is fairly random in what might be effected one week to the next. Though these images indicate severe problems to me, does it actually look not so bad for now? And how bad will it get? When I look at it, I feel like he should have more problems in evidence then he is having so far. Maybe it can look so bad and not be producing any physical symptoms that I'm aware of because we supposedly use so little of our brain - maybe part of what has atrophied is a part that isn't used?
I wish I could make a list of symptoms, and then a little map of the brain would light up, showing; what atrophy would be most likely to be apparent with those symptoms. Then I would pick another symptom - like trouble speaking - that will come eventually - and see what lights up - see if it's close to what's already happening - see if it's close to the current edges of what looks like chasms - see if it's next. Or load my husband's MRI into some app that would spit out the symptoms that are likely in evidence with his profile. Wouldn't that be cool? So far, I haven't found any such tool, and I doubt there's one out there. But I'm sure there will be some day.
We finally meet with the attorney briefly this next week - our original appointment got cancelled. We got the bill for the driving assessment - but not the report yet! Our insurance actually covered the assessment - all but $67. Amazing. I'm a little anxious about the report - I know Dave reported he did well, and he hasn't had an accident in several years, but I am beginning to get concerned about it. I guess I could get him a bike - with a basket - and he could still go to the store like he enjoys, and pick up some groceries. He'd have to stop his two hour a week job - and probably have to walk to the senior center where he volunteers once a week washing dishes for an hour or so, and where he goes to exercise six days a week.
If anyone reading this knows anything about MRI's, most especially MRI's of a person with FTD, and you have some insight to offer, I would so appreciate it. Feel free to e-mail me at sorod55@gmail.com, or comment here. Or if you have similar thoughts, concerns, or any reason at all.
I so wish I had a crystal ball. Sometimes I wonder about selling our house if he'll eventually be in a wheel chair - we're in a split level with no bathroom on the main floor. Or if I get some work done in our tiny little master bathroom that no wheel chair would ever fit into, should I go big to plan for the future? Or should I fix things up here and get it ready to sell so we can move into a one level with plenty of room for a wheelchair to maneuver? Ugh. My brain just never stops spinning. So much to consider and ponder.
Chapter 8 A picture's worth a thousand words
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| My husband's MRI is the middle one - on the left is normal - on the right is advanced Alzheimer's. This demonstrates how his hippocampus looks pretty good - where in Alzheimer's it would seriously deteriorated. But his temporal lobes compared to a normal brain have significant spaces. |
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| My husband's is in the middle, again with a comparison to a normal brain and one with Alzheimer's. |
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| This is the most telling - on the top is a normal 53 year old brain on the left, my husband's in the center, and a normal 86 year old brain on the right. EEK! |
Saturday, September 13, 2014
Chapter 7 "Where should I go?" said Alice. "It depends on where you want to end up."
Monday we have a brief consultation scheduled with an attorney to find out what we need to think about with regard to power of attorney, a will, medical decisions, and every thing that goes along with setting things up before Dave isn't able to contribute to those decisions. And knowing that Dave even now wouldn't be able to handle money or deal with some every day decisions, it feels somewhat urgent to get something in place in case something should happen to me. It feels a little bit strange to be worried about the care of my husband in case of my death where for so many years my concern was only for the care of my children should anything happen to me. I guess I have never thought about who I want making those decisions if I die before Dave. In the past, I've briefly talked with the children about what the plan might be to make sure their dad is provided for and taken care of if something happened to me, but I haven't thought about "decisions" that might have to be made. I haven't given thought to the legal aspects of it. In normal circumstances, the husband would look after things when a spouse passes away. Dave will continue to need someone to look after him. He wouldn't be able to live on his own, manage money, take care of himself. I worry about the burden that places on my children. They would not shirk the responsibility, but I don't think they can comprehend what it will entail. I can't even comprehend what may be ahead for me. I can't fathom the decisions I may have to make about Dave and care he may need in the future. So to think of my children having to make that decision is mind boggling. I know people have to make these decisions every day. It is a part of life. And a part of death. It is all so intertwined. And so frightening. I'm not sure if that's the right word for it, but it's the one that comes to mind right now.
I remember so clearly when my sister had a mastectomy years ago - I was so thrown by the results - large tumor and removal of some lymph nodes - I had to run to the grocery store on the way home from the hospital after spending a large part of the day in the waiting room - and I was standing in line to purchase something - the cashier smiled and said "how are you today?" I think I answered "fine" - but my mind was screeching - how is everyone still going about their business like nothing is wrong? MY SISTER HAS CANCER! And yet life does go on. Every day I know I pass people in the halls of my work, or on the street, or in the parking lot at the grocery store who are dealing with much personal sadness and loss. And their minds may be screeching just what mine was that day. It is so much a part of every day life for thousands of "someones" every single day. I'm just not used to it being a part of my every day life.
That fact is even more apparent with what is happening with my father. He saw an oncologist yesterday - I was at the appointment. The estimated life expectancy is 6 months - could be more, could be less. It seems surreal - like I'm watching myself go through the motions - because my dad feels well. It's not like he has been feeling sick for months or years. In fact at 30 years older then my husband, my dad is so capable and sharp. Six months? Really? I sent the word out to family - we tend to share this information by e-mail so everyone gets the same facts. Otherwise it can be like that old game of telephone - where after the message has been passed along, it doesn't resemble the original when it gets to the last person. I know when I wrote this e-mail, I change the wording so many times to make sure I don't add anything I've concluded from the discussion that may be way off base. It may be silly, but with such a large family, it feels important that we all get the same information to start off with.
In the doctor's office, as we discussed my dad's prognosis, he talked about maybe wanting to parachute out of an airplane. My brother mentioned Dad has always asked why jump out of a perfectly good airplane? Dad chuckled - and said something about a bucket list. I hope my dad does it! I hope this will make him grab all the opportunities he can that in the past he might have passed on - and I know it will push me to make time each week to spend with him. If six months is the right estimate, then once a week means I'll only see him 26 more times. What? Wait a minute. So maybe it should be twice a week - and still, that's only 52 times. It makes me sad. I guess I have taken it for granted, that it will be the same today as yesterday - until I become one of the "someones" - afraid to lose someone I love - afraid of the change that is coming. It's funny, because I've always thought of myself as a strong person, a person more aware then some of how life can change like the weather, a little more grounded in reality. But I find each day that my perspective is changing with the challenges life presents. All those little sayings - don't sweat the small stuff - stop and smell the roses - seize the day - live life to the fullest - they are so simple yet so challenging, they hold so much truth. And I can do all that in an ordinary every day life. And for me, that will help me make my life extraordinary. I want to make it all count now - for myself, my kids, my husband, and my dad. I have my own little bucket list - wanting to go whale watching - taking a horse drawn sleigh ride in the snow - and maybe I'll get to do those things some day. But if I don't, my every day ordinary life can be extraordinary if I choose to make it so.
This morning I head over to talk to my dad about his will, etc. at his request. I'm his named executor. So I'll get a taste of what I need to think about for our meeting with an attorney to prepare for the rest of my life.
I remember so clearly when my sister had a mastectomy years ago - I was so thrown by the results - large tumor and removal of some lymph nodes - I had to run to the grocery store on the way home from the hospital after spending a large part of the day in the waiting room - and I was standing in line to purchase something - the cashier smiled and said "how are you today?" I think I answered "fine" - but my mind was screeching - how is everyone still going about their business like nothing is wrong? MY SISTER HAS CANCER! And yet life does go on. Every day I know I pass people in the halls of my work, or on the street, or in the parking lot at the grocery store who are dealing with much personal sadness and loss. And their minds may be screeching just what mine was that day. It is so much a part of every day life for thousands of "someones" every single day. I'm just not used to it being a part of my every day life.
That fact is even more apparent with what is happening with my father. He saw an oncologist yesterday - I was at the appointment. The estimated life expectancy is 6 months - could be more, could be less. It seems surreal - like I'm watching myself go through the motions - because my dad feels well. It's not like he has been feeling sick for months or years. In fact at 30 years older then my husband, my dad is so capable and sharp. Six months? Really? I sent the word out to family - we tend to share this information by e-mail so everyone gets the same facts. Otherwise it can be like that old game of telephone - where after the message has been passed along, it doesn't resemble the original when it gets to the last person. I know when I wrote this e-mail, I change the wording so many times to make sure I don't add anything I've concluded from the discussion that may be way off base. It may be silly, but with such a large family, it feels important that we all get the same information to start off with.
In the doctor's office, as we discussed my dad's prognosis, he talked about maybe wanting to parachute out of an airplane. My brother mentioned Dad has always asked why jump out of a perfectly good airplane? Dad chuckled - and said something about a bucket list. I hope my dad does it! I hope this will make him grab all the opportunities he can that in the past he might have passed on - and I know it will push me to make time each week to spend with him. If six months is the right estimate, then once a week means I'll only see him 26 more times. What? Wait a minute. So maybe it should be twice a week - and still, that's only 52 times. It makes me sad. I guess I have taken it for granted, that it will be the same today as yesterday - until I become one of the "someones" - afraid to lose someone I love - afraid of the change that is coming. It's funny, because I've always thought of myself as a strong person, a person more aware then some of how life can change like the weather, a little more grounded in reality. But I find each day that my perspective is changing with the challenges life presents. All those little sayings - don't sweat the small stuff - stop and smell the roses - seize the day - live life to the fullest - they are so simple yet so challenging, they hold so much truth. And I can do all that in an ordinary every day life. And for me, that will help me make my life extraordinary. I want to make it all count now - for myself, my kids, my husband, and my dad. I have my own little bucket list - wanting to go whale watching - taking a horse drawn sleigh ride in the snow - and maybe I'll get to do those things some day. But if I don't, my every day ordinary life can be extraordinary if I choose to make it so.
This morning I head over to talk to my dad about his will, etc. at his request. I'm his named executor. So I'll get a taste of what I need to think about for our meeting with an attorney to prepare for the rest of my life.
Sunday, September 7, 2014
Chapter 6 "How long is forever?" "Sometimes, just a second."
On Friday, my father got results of his biopsy he had earlier in the week. He is just shy of 94 years old. He's had a long healthy life, but a couple of years ago was diagnosed with bladder cancer. He's had a couple of runs of treatments that have held it at bay. But it has now spread to his lung. It was an aggressive cancer at the time of the original diagnosis. So it is not a surprise that it has finally begun to spread. But it is a disappointment. I know people don't live forever, and that as we are living, we are moving toward death. But I can't get through a day thinking like that! Who can? We talk about life! Make the most of life! Live your life! Seize the day! We all know our time on earth is limited. Yet it is still a surprise to me, each and every time, when someone I know is terminally ill, or dies. Even my dad at his age. I think if I had an estimated point in time that I may stop living due to disease or some injury, I probably would look at each day as dying, rather then living. I don't think I am a person who will handle that well.
My mother handled it well. Or at least in my presence, she did. She also never really asked how long she would live with her cancer. I remember asking what the doctor said - how long do they think? She always told me she didn't ask. Maybe it gave her more control. It allowed her to keep living, because there wasn't an "end date" looming. Or maybe she did ask but didn't share. I sometimes wonder what her thoughts were as she knew her "forever" was coming to an end. I think I was afraid to ask. She was almost 74, still young.
I've been spoiled - in my very large family of eleven brothers and sisters, eleven brothers and sisters-in-law, many nieces and nephews and great nieces and nephews, we've been very fortunate to be for the most part a healthy bunch for so many years. But we're getting older - my mother died fifteen years ago, I lost one of my sisters four years ago at the age of 57, and a brother-in-law in his early 50's about nine years ago. I guess that's life, right? Death is a part of life.
FTD, whatever it does in its destruction of the brain, takes away the comprehension of what is to come for my husband. I think that is good for him, not so good for me. I don't think I'll get to know his thoughts and feelings when things progress, whether that's five years from now, or ten or twenty. I feel like it would be a one way conversation. We have had several frank conversations about the disease. And I've told him that this disease is different for every person. He seems to "get" that he has FTD, but it is easily put out of his thoughts and his mind. And yet, I've heard him in conversations with people when he is doing what I call his "bit" where he talks in Spanish and asks how people are doing, when the person says "Muy bien", he always says he's never muy bien (very good), he's just bien (good) or asi asi (so so). I don't know if he's just trying to be funny, or if he is not feeling great.
As I have more conversations with him, interacting with him more, trying to pull him more into my reality, trying to engage him and get some exercise going in that brain of his, I do notice more deficits in comprehension and life skills. It is just more evident to me now.
As I read more about FTD and try to educate myself about the stages and progression of this disease, I am reminded that we are fortunate that Dave's progression has been slow thus far. But I wonder what starts the next stage? What causes the tipping? Is it one particular brain cell among all the other brain cells that bursts or dies or whatever and another light goes out? Or is it the opposite? Is it not using a part of the brain - not accessing its power - not exercising it that makes it fail further? I'm not good about not knowing. I need the big picture! I'm a big picture person! But I don't have control of this. And no one really knows. So we just keep on living, a day at a time, and we make the most of it all! Because forever could be just a second.
My mother handled it well. Or at least in my presence, she did. She also never really asked how long she would live with her cancer. I remember asking what the doctor said - how long do they think? She always told me she didn't ask. Maybe it gave her more control. It allowed her to keep living, because there wasn't an "end date" looming. Or maybe she did ask but didn't share. I sometimes wonder what her thoughts were as she knew her "forever" was coming to an end. I think I was afraid to ask. She was almost 74, still young.
I've been spoiled - in my very large family of eleven brothers and sisters, eleven brothers and sisters-in-law, many nieces and nephews and great nieces and nephews, we've been very fortunate to be for the most part a healthy bunch for so many years. But we're getting older - my mother died fifteen years ago, I lost one of my sisters four years ago at the age of 57, and a brother-in-law in his early 50's about nine years ago. I guess that's life, right? Death is a part of life.
FTD, whatever it does in its destruction of the brain, takes away the comprehension of what is to come for my husband. I think that is good for him, not so good for me. I don't think I'll get to know his thoughts and feelings when things progress, whether that's five years from now, or ten or twenty. I feel like it would be a one way conversation. We have had several frank conversations about the disease. And I've told him that this disease is different for every person. He seems to "get" that he has FTD, but it is easily put out of his thoughts and his mind. And yet, I've heard him in conversations with people when he is doing what I call his "bit" where he talks in Spanish and asks how people are doing, when the person says "Muy bien", he always says he's never muy bien (very good), he's just bien (good) or asi asi (so so). I don't know if he's just trying to be funny, or if he is not feeling great.
As I have more conversations with him, interacting with him more, trying to pull him more into my reality, trying to engage him and get some exercise going in that brain of his, I do notice more deficits in comprehension and life skills. It is just more evident to me now.
As I read more about FTD and try to educate myself about the stages and progression of this disease, I am reminded that we are fortunate that Dave's progression has been slow thus far. But I wonder what starts the next stage? What causes the tipping? Is it one particular brain cell among all the other brain cells that bursts or dies or whatever and another light goes out? Or is it the opposite? Is it not using a part of the brain - not accessing its power - not exercising it that makes it fail further? I'm not good about not knowing. I need the big picture! I'm a big picture person! But I don't have control of this. And no one really knows. So we just keep on living, a day at a time, and we make the most of it all! Because forever could be just a second.
Wednesday, September 3, 2014
Chapter 5 Just rambling throughts
Time off is over. Had a nice long five day weekend - got to start this blog, which has been so cathartic. Got to find out more about this disease. Got to let this all settle in and move on. Not move on from the facts of life - not leave this all behind - but move on from the shell shocked state I felt I might have been in last week, I'm moving on with this new information and this new perspective. It is amazing to me how knowing the cause has made my relationship with Dave so much easier. I'm more concerned then anything. I've tried to suggest some things he might be able to do during the day - to exercise his mind, and take up a few hours that he won't be able to just sit and watch the game show network! I suggested jigsaw puzzles - no go. Suggested a Stephen King book - he used to really enjoy those - no go. Suggested some of the activities at the Senior Center - billiards, Euchre, puzzles - a more resounding "why would I want to do that?"
So I guess I'll just keep trying to come up with other ideas! My son suggested maybe we come up with a printed sort of monthly schedule and plan it out with his input. He actually doesn't mind doing household chores. He does a lot of what's called "industrial behavior". As soon as there is a dish or utensil in the sink or on the counter, whether you are done with it or not, it goes into the dishwasher. He fills the dishwasher regularly, turns it on, unloads it, and puts stuff away. If I have an almost empty pop can, he'll come over and check it to see if it's empty - and if he thinks it's empty, it's gone! If you put a candy wrapper, or crumpled napkin beside you on an end table, it magically disappears! It for the most part is a very helpful thing. Sometimes we find something missing - some silver charms I bought to make something for Michael - several small bottles of "Clear Eyes" - a new deodorant - sometimes we find them in the garbage, and sometimes we don't! Sometimes things are put away, but he can't remember where he put them, and we still haven't found them! He seems to enjoy restoring order in a basic manner. Yes, dishes get broken, things aren't always the cleanest they could be when they are put away, and we sometimes have to look for them, but he feels like he is contributing. At least I assume that's why he does it. If I ask him to maybe vacuum the rugs, he makes sure he tells me when I get home that he did that. It's kind of sweet. But I really want to find something that will increase his interaction with others - something that he'll actually enjoy. Just going to have to pick my brain a little more on that one.
He loves our two little neighbors - Z is 7, P is 5. We've known them their whole lives. He makes sure we have Bomb Pops for them - sometimes they'll come to the door - we call them the Bomb Pop Bandits - each day in the heat of summer, he would tell me if they'd come over or not. Sometimes he checks to see if they're outside and go out and ask them if they would like one. Sometimes he'll sit out on the front porch and interact with them a bit - since he's hard of hearing, he can't always follow the conversation, but while he's engaged, it brings back so many memories of him with our children when they were young, and other kids. He could do many different animal sounds and would entertain kids for hours with that! It was such fun!
He is a very kind man - unfortunately part of the disease - the apparent apathy and loss of filter - masks it a lot of the time today. But that's ok. One great thing about having a diagnosis and doing this blog has let family members know it's the disease.
Yes, there are a lot of things I wish for. But I also know that my family is blessed in so many ways, even with regards to this disease right now. Ask me in five years, and I hope I'll feel the same. I have a lot of family that care for me and my husband. I have family members with their own struggles. This just happens to be ours. And so far, it's a walk in the park on a nice day - thanks to all around me.
So I guess I'll just keep trying to come up with other ideas! My son suggested maybe we come up with a printed sort of monthly schedule and plan it out with his input. He actually doesn't mind doing household chores. He does a lot of what's called "industrial behavior". As soon as there is a dish or utensil in the sink or on the counter, whether you are done with it or not, it goes into the dishwasher. He fills the dishwasher regularly, turns it on, unloads it, and puts stuff away. If I have an almost empty pop can, he'll come over and check it to see if it's empty - and if he thinks it's empty, it's gone! If you put a candy wrapper, or crumpled napkin beside you on an end table, it magically disappears! It for the most part is a very helpful thing. Sometimes we find something missing - some silver charms I bought to make something for Michael - several small bottles of "Clear Eyes" - a new deodorant - sometimes we find them in the garbage, and sometimes we don't! Sometimes things are put away, but he can't remember where he put them, and we still haven't found them! He seems to enjoy restoring order in a basic manner. Yes, dishes get broken, things aren't always the cleanest they could be when they are put away, and we sometimes have to look for them, but he feels like he is contributing. At least I assume that's why he does it. If I ask him to maybe vacuum the rugs, he makes sure he tells me when I get home that he did that. It's kind of sweet. But I really want to find something that will increase his interaction with others - something that he'll actually enjoy. Just going to have to pick my brain a little more on that one.
He loves our two little neighbors - Z is 7, P is 5. We've known them their whole lives. He makes sure we have Bomb Pops for them - sometimes they'll come to the door - we call them the Bomb Pop Bandits - each day in the heat of summer, he would tell me if they'd come over or not. Sometimes he checks to see if they're outside and go out and ask them if they would like one. Sometimes he'll sit out on the front porch and interact with them a bit - since he's hard of hearing, he can't always follow the conversation, but while he's engaged, it brings back so many memories of him with our children when they were young, and other kids. He could do many different animal sounds and would entertain kids for hours with that! It was such fun!
He is a very kind man - unfortunately part of the disease - the apparent apathy and loss of filter - masks it a lot of the time today. But that's ok. One great thing about having a diagnosis and doing this blog has let family members know it's the disease.
Yes, there are a lot of things I wish for. But I also know that my family is blessed in so many ways, even with regards to this disease right now. Ask me in five years, and I hope I'll feel the same. I have a lot of family that care for me and my husband. I have family members with their own struggles. This just happens to be ours. And so far, it's a walk in the park on a nice day - thanks to all around me.
Tuesday, September 2, 2014
Chapter 4 "Curiouser and curiouser!"
This disease is such a mystery. I called our neurologist's office today (Dr. B) to ask some questions now that I've had time to process some of this. I asked about Dave's MRI compared to others - did it look how she would expect? Worse then others? Not so bad? Is his hearing loss caused by FTD or is it coincidental? Is his pursed breathing part of the disease? Would she classify his FTD as the behavior variant kind? How severe is his - what "stage" of the progression of the disease?
The MRI is what it is. There is no way to make a comparison. Some people can present with lesser clinical symptoms but their MRI may look severe, others can present with many clinical symptoms, but their MRI doesn't show much degeneration. Okay. The hearing loss is NOT caused by FTD, it is just coincidental. The pursed breathing? An OCD kind of behavior - certainly not unexpected to have those kind of symptoms with FTD. She would classify Dave's FTD as the behavior variant type, which is what I thought based on the symptoms. And she would say he's in the mild to moderate state of the disease, in part because he is impaired enough that he probably could not live on his own. I agree with that. She asked if he was still driving - and he is - he had a driving assessment done last week - took about two and a half hours - I told her he did pass the test - apparently did pretty well - but we haven't received the written report yet. She was surprised he did well, and will call us once they get the report. She suggested we get the assessment at our first appointment, and gave us all the information with where to contact to get this set up. It costs about $300, and will be billed to insurance, but it is doubtful it will be covered. I am glad we had that done - it certainly makes me feel more comfortable about him driving, and it "protects" him in case there would ever be a situation where he was involved in an accident that was not his fault, but his culpability might come into question since he has this degenerative brain disease. Such a good idea! Hopefully we don't have to do this every year or so!
When I was making my list of questions today, I asked Dave if he had any questions. He did ask if one day he would not be able to drive - I explained the reason for the driving assessment, and that for now he seemed to be fine to drive. But sometime down the road, he might not be able to drive. He asked what would happen next - I told him no one really knows - it's that kind of disease and progresses differently in everyone. He asked if he would die from it - I said it is considered a terminal illness, and that he would probably eventually die, but again, depending on the progression, it could be years and years. We talked a little about what the progression might look like, based on information we have in hand. We discussed it was important to tell me about anything he notices with regard to motor weakness or problems, eye problems, etc. so we can make sure Dr. B knows about it. He wondered if he'd still be able to think - I asked him to clarify what he meant and explained some of the problems he had so far. "Just like I'm thinking right now - wondering what happens next - will I think like that?" I told him what I know so far, which is that it is different with every person, but I didn't think he would stop thinking - just have more problems with understanding what was said to him, or for him to get the words out to communicate eventually. He seemed relieved to hear after the phone call that he was in the mild to moderate stage. And he laughed when I told him Dr. B was surprised he passed the driving test! He seemed happy about that. And then he put it out of his mind. That was the longest discussion we had about it - I was glad he was able to think of questions, as he didn't have any when we were in Dr. B's office last week. So he is processing it all, but not dwelling on it.
I accepted the ALS ice bucket challenge today, but noted it was only because of the association with FTD. It seems that any research for ALS with regard to gene mutation will only help FTD advancement because they share a gene mutation. 10 - 15% of people with FTD get ALS. I also noted I would be coming up with some kind of challenge for friends and family to spread the word about FTD and raise some funds for that research! It seemed it did good work to raise awareness for ALS. I'm looking for some ideas! All in all, a good day's work.
Now I've got to take care of the ice bucket challenge - NOT FUN!
The MRI is what it is. There is no way to make a comparison. Some people can present with lesser clinical symptoms but their MRI may look severe, others can present with many clinical symptoms, but their MRI doesn't show much degeneration. Okay. The hearing loss is NOT caused by FTD, it is just coincidental. The pursed breathing? An OCD kind of behavior - certainly not unexpected to have those kind of symptoms with FTD. She would classify Dave's FTD as the behavior variant type, which is what I thought based on the symptoms. And she would say he's in the mild to moderate state of the disease, in part because he is impaired enough that he probably could not live on his own. I agree with that. She asked if he was still driving - and he is - he had a driving assessment done last week - took about two and a half hours - I told her he did pass the test - apparently did pretty well - but we haven't received the written report yet. She was surprised he did well, and will call us once they get the report. She suggested we get the assessment at our first appointment, and gave us all the information with where to contact to get this set up. It costs about $300, and will be billed to insurance, but it is doubtful it will be covered. I am glad we had that done - it certainly makes me feel more comfortable about him driving, and it "protects" him in case there would ever be a situation where he was involved in an accident that was not his fault, but his culpability might come into question since he has this degenerative brain disease. Such a good idea! Hopefully we don't have to do this every year or so!
When I was making my list of questions today, I asked Dave if he had any questions. He did ask if one day he would not be able to drive - I explained the reason for the driving assessment, and that for now he seemed to be fine to drive. But sometime down the road, he might not be able to drive. He asked what would happen next - I told him no one really knows - it's that kind of disease and progresses differently in everyone. He asked if he would die from it - I said it is considered a terminal illness, and that he would probably eventually die, but again, depending on the progression, it could be years and years. We talked a little about what the progression might look like, based on information we have in hand. We discussed it was important to tell me about anything he notices with regard to motor weakness or problems, eye problems, etc. so we can make sure Dr. B knows about it. He wondered if he'd still be able to think - I asked him to clarify what he meant and explained some of the problems he had so far. "Just like I'm thinking right now - wondering what happens next - will I think like that?" I told him what I know so far, which is that it is different with every person, but I didn't think he would stop thinking - just have more problems with understanding what was said to him, or for him to get the words out to communicate eventually. He seemed relieved to hear after the phone call that he was in the mild to moderate stage. And he laughed when I told him Dr. B was surprised he passed the driving test! He seemed happy about that. And then he put it out of his mind. That was the longest discussion we had about it - I was glad he was able to think of questions, as he didn't have any when we were in Dr. B's office last week. So he is processing it all, but not dwelling on it.
I accepted the ALS ice bucket challenge today, but noted it was only because of the association with FTD. It seems that any research for ALS with regard to gene mutation will only help FTD advancement because they share a gene mutation. 10 - 15% of people with FTD get ALS. I also noted I would be coming up with some kind of challenge for friends and family to spread the word about FTD and raise some funds for that research! It seemed it did good work to raise awareness for ALS. I'm looking for some ideas! All in all, a good day's work.
Now I've got to take care of the ice bucket challenge - NOT FUN!
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