It has been amazing to me how a diagnosis of a terminal illness WITHOUT A CURE can make such a large effect on how patients are covered by insurance. This also effects how patients are treated by the doctors and support care. Quality of life seems to be ultimately left up to the families of the patient. Not only the emotional support but also the financial support for anything that would include quality of life. I have called hospice I have called many local agencies but as long as we keep doing proactive care for Gary he does not qualify.
A big need we have is a second vehicle in which a wheelchair can be put inside the vehicle. This is to transport Gary while he still can leave the house. We have even looked for help to get Gary transported to doctor appointments but it does not happen. Because it is so hard for anyone to understand Gary I am currently paying for a voice machine for him but we do not have access to it yet. So as I work and our son Lance works Gary has no voice. During business hours we are not able to call and to search. I have been chasing ways to get help but then can not take off work to get Gary there and to also have someone speak for him. I feel like yes there is help out there but I am not available to be able to make the connection to get the help. I am sure many think with cell phones time is limitless. Not true with my work they expect to get their work done while I am on the clock. I understand that and I agree.
I have read about divorce with ALS and how wives are more likely to care for husband who is diagnosed. In this case the divorce seems to be as low as 3% will divorce their husbands. But then when wives who were diagnosed there is a much higher divorce rate. It was stated about the man choosing to work and not allow the disease to keep him from making a good living and how others stepped in to help out the divorced wife.
I just wonder if this is not part of a great plan to get his loved one the best care. He steps aside and everyone sees the need and steps in to take care for this terminally ill abandoned wife. Also no longer his income is not calculated to determine her eligibility for much needed and very expensive help.
Men do have that very logical part of his brain to help plan this out and bare the burden of what others may think and his loved one seems to be much better off without him.
I as a caregiver of my husband who seems to be missing out on much needed care because of the fact that I am determined to work as much as I possible can to help meet all his treatment needs. Which now puts me in a higher income bracket that keeps my husband from getting the support he needs. Now he would have to give up on the natural treatment that helps him so much, slows down the disease and helps with quality of life. Because in order for us to meet these natural treatments needs I have to constantly pursue the higher income.
I feel like we need a full-time wife or family manager in this home while I take on the financial provider role or visa versa. LOL
Again just some thoughts.
I try to keep all this in the background as Gary and I go through our daily lives. It is deer season now a time of year he has always loved and enjoyed with his friends and family. Where we now live friends and family are too far away. He has a scope set up next to our bed and he can sit on the edge of the bed and watch deer right outside the house. A couple of nights ago there were three doe's right outside the window as he watched you could see the sparkle in his eyes. He says with hand motion that he is waiting for the buck to come out after the multiple doe. He motioned to me that he would just shoot that doe from right there. Now know that he did not even have his gun or bow or anything beside him, but he was still living it as if it was and that was good enough.
I would have to say that my husband is unbelievably strong. He fights through daily self care to stay independent and to help out in every way he can. This will exhaust him to where he will sleep for sometimes two days.
He loves when we can go to see the grandchildren because it is wild how they meet grandpa right where he is...the youngest two do not know their grandpa any other way but with this disease so they are very use to greeting grandpa with a growling noise instead of a hello lol. The youngest just smiles and growls as soon as he sees grandpa's truck and then gives grandpa a big smile and growl when he sees him. This is Jett he is two. This has also has been past on to the next to the youngest Alissa she then has watched and knows that all is ok as she talks 100 miles an hour to grandpa and he just smiles and gives her a thumbs up. So know as I watch this opens up the door for the oldest two Piper 6 and Kyli 9 who probably by now barely have memory of grandpa before this horrific disease but know it always has not been like this and they pick up on the subtle changes of decline from the last time that they seen grandpa, so they hesitate a bit, but will then join in with the younger ones and just accept Grandpa Mitchell just as he is...These little ones and their innocents have been and are such a blessing to both of us. Helps us to stay in the now and enjoy what we have today.
We plan to see them next weekend we hope for a lot of good times and memories made making pumpkin pies and stuffing a turkey and all the fixings. Gary has a doc appointment Friday so I will be taking a day off work and taking him down and we will spend the overnight with DJ and his family. This will be our Thanksgiving Day :)
A big need we have is a second vehicle in which a wheelchair can be put inside the vehicle. This is to transport Gary while he still can leave the house. We have even looked for help to get Gary transported to doctor appointments but it does not happen. Because it is so hard for anyone to understand Gary I am currently paying for a voice machine for him but we do not have access to it yet. So as I work and our son Lance works Gary has no voice. During business hours we are not able to call and to search. I have been chasing ways to get help but then can not take off work to get Gary there and to also have someone speak for him. I feel like yes there is help out there but I am not available to be able to make the connection to get the help. I am sure many think with cell phones time is limitless. Not true with my work they expect to get their work done while I am on the clock. I understand that and I agree.
I have read about divorce with ALS and how wives are more likely to care for husband who is diagnosed. In this case the divorce seems to be as low as 3% will divorce their husbands. But then when wives who were diagnosed there is a much higher divorce rate. It was stated about the man choosing to work and not allow the disease to keep him from making a good living and how others stepped in to help out the divorced wife.
I just wonder if this is not part of a great plan to get his loved one the best care. He steps aside and everyone sees the need and steps in to take care for this terminally ill abandoned wife. Also no longer his income is not calculated to determine her eligibility for much needed and very expensive help.
Men do have that very logical part of his brain to help plan this out and bare the burden of what others may think and his loved one seems to be much better off without him.
I as a caregiver of my husband who seems to be missing out on much needed care because of the fact that I am determined to work as much as I possible can to help meet all his treatment needs. Which now puts me in a higher income bracket that keeps my husband from getting the support he needs. Now he would have to give up on the natural treatment that helps him so much, slows down the disease and helps with quality of life. Because in order for us to meet these natural treatments needs I have to constantly pursue the higher income.
I feel like we need a full-time wife or family manager in this home while I take on the financial provider role or visa versa. LOL
Again just some thoughts.
I try to keep all this in the background as Gary and I go through our daily lives. It is deer season now a time of year he has always loved and enjoyed with his friends and family. Where we now live friends and family are too far away. He has a scope set up next to our bed and he can sit on the edge of the bed and watch deer right outside the house. A couple of nights ago there were three doe's right outside the window as he watched you could see the sparkle in his eyes. He says with hand motion that he is waiting for the buck to come out after the multiple doe. He motioned to me that he would just shoot that doe from right there. Now know that he did not even have his gun or bow or anything beside him, but he was still living it as if it was and that was good enough.
I would have to say that my husband is unbelievably strong. He fights through daily self care to stay independent and to help out in every way he can. This will exhaust him to where he will sleep for sometimes two days.
He loves when we can go to see the grandchildren because it is wild how they meet grandpa right where he is...the youngest two do not know their grandpa any other way but with this disease so they are very use to greeting grandpa with a growling noise instead of a hello lol. The youngest just smiles and growls as soon as he sees grandpa's truck and then gives grandpa a big smile and growl when he sees him. This is Jett he is two. This has also has been past on to the next to the youngest Alissa she then has watched and knows that all is ok as she talks 100 miles an hour to grandpa and he just smiles and gives her a thumbs up. So know as I watch this opens up the door for the oldest two Piper 6 and Kyli 9 who probably by now barely have memory of grandpa before this horrific disease but know it always has not been like this and they pick up on the subtle changes of decline from the last time that they seen grandpa, so they hesitate a bit, but will then join in with the younger ones and just accept Grandpa Mitchell just as he is...These little ones and their innocents have been and are such a blessing to both of us. Helps us to stay in the now and enjoy what we have today.
We plan to see them next weekend we hope for a lot of good times and memories made making pumpkin pies and stuffing a turkey and all the fixings. Gary has a doc appointment Friday so I will be taking a day off work and taking him down and we will spend the overnight with DJ and his family. This will be our Thanksgiving Day :)
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