With all of the walls we have come up against these past few days, I have written an email to the Attorney General of Connecticut, Mr. Richard Blumenthal, in hopes he may be able to extend us some help and some hope.
Mr. Blumenthal,
My name is Megan Strange and I am writing to you about my mom, Marian Strange. She is 57 and was diagnosed last November with a Glioblastoma (GBM IV) that is pressing on the motor strip of her left frontal lobe. Over the last nine months, my father and I have chased down every doctor, neurosurgeon, oncologist, and treatment available to buy her some more time. In the midst of this we have been battling the insurance company, my mom’s employer (ironically, The Hartford Insurance Company), and the Social Security Administration for reimbursement, authorizations, and disability entitlements. The hardest part, of course, was not managing the logistics and the bureaucracies, but slowly losing our mother, wife, and, best friend while doing so.
I could go into great depth about our journey, but it would mean very much to me if you would take the time to look at the blog that I have been keeping instead. Here is the link: http://mama-marian-strange.blogspot.com/.
My reason for writing to you tonight is to ask for your help. Every time it seems this could not get any more difficult, it seems to do just that. At this point in time we are at a loss for how to move forward. More than anything, we would love to bring my mom home to our house in Canton to spend her last weeks and days with Hospice to help us care for her and keep her comfortable. However, this has proved to be near impossible for me and my father. She is in a great deal of pain that the doctors have not been able to relieve without leaving her near comatose and has episodes of significant agitation in which she sometimes becomes confused and combative.
The insurance company, Blue Cross and Blue Shield, has denied her any further Skilled Nursing Care after only three weeks, despite our advocacy and expedited appeals. We may have the option of using her $25,000 lifetime maximum of Hospice care allotted by insurance; however this would only allow for a month of inpatient care. Although my mom is extremely sick, she is also young and strong, and we expect her to live for another couple of months at least. After the Hospice benefits are exhausted, we would likely have no other option than to cash in my father’s life insurance plan, take out a second mortgage on a home that is almost paid off after 30 years, and leave my dad with next to nothing. Then, and only then, might my mom qualify for Medicaid to pay for the remainder of her care.
To be honest, I am not sure what it is that I am asking of you. I was told by a friend of my mother’s how proactive and compassionate you have been in your role as Attorney General for the state of Connecticut. She recommended I try writing to you to ask for some guidance, for some support. I would greatly appreciate anything that you might be able to do to help my mom and my family.
Thank you so very much for taking the time to read my email and consider my request for help.
Sincerely,
Megan E. Strange
Thursday, September 10, 2009
Wednesday, September 9, 2009
All in One Day
On an evening the nation is tied up in a debate over health care, we find ourselves muddled in the thick of it in a much more personal way. I am not one to get carried away or fired up over political issues; I suppose I've always left that to my mom. Yet there is something so unbelievably raw about all of this that leaves me furious, feeling desperate, and saddened by what is. On this very day of such focus on health reform, Mama Marian was denied by Blue Cross Blue Shield for Skilled Nursing Care at McLean. We are saddled with choices that seem no one should have to make... choices that should not be choices at all.
And yet, tonight we are doing just that. Dad is home calculating how many days we could buy if we cashed in his life insurance policy, if we took out a second mortgage on the house that is just a couple of years from being paid off... I am four hundred miles away reading up on Connecticut Title XIX Medicaid. What would we have to do to get Medicaid coverage for my dying mom to let her have a few more weeks? Sell a car? Divorce after 34 years of marriage just to have it on paper? Sell the house? After over 30 years of working five plus days per week, raising two kids, and never having to depend on public assistance... ready to settle down and retire... almost. I'm home with my highlighter and pencil trying to decipher how I can somehow bring my parents' "estate" down to $1600 in assets so that they can qualify for a Medicaid Spend-Down to keep my mom comfortable for a couple more months. There is something so completely disheartening and maddening about politicizing health care and how on earth did we come to this place?
We may be able to access Mom's $25,000 lifetime limit on Hospice Care for continued care at McLean. And how much does that buy us? 38 days of inpatient care. 38 days. 38 days ago we were coming home from a "vacation" with Mom. Where could we be 38 days from now? Taking Mom home from McLean with a catheter, unable to feed herself, in breathtaking pain... without help because we've exhausted our "lifetime limit"? How unbelievably inhuman can this nation be?
There is a part of me that is embarrassed to write this, to put myself out there so much... to be so enraged by politics. But how can I not? How can I give into that little faux moderate conformist within me, submit to its attempts at pulling me back with its "can't we all just get along slogan"? It's too important to let this go and pretend it doesn't hit me right at home. It's too much tonight. Too much in one day.
And yet, tonight we are doing just that. Dad is home calculating how many days we could buy if we cashed in his life insurance policy, if we took out a second mortgage on the house that is just a couple of years from being paid off... I am four hundred miles away reading up on Connecticut Title XIX Medicaid. What would we have to do to get Medicaid coverage for my dying mom to let her have a few more weeks? Sell a car? Divorce after 34 years of marriage just to have it on paper? Sell the house? After over 30 years of working five plus days per week, raising two kids, and never having to depend on public assistance... ready to settle down and retire... almost. I'm home with my highlighter and pencil trying to decipher how I can somehow bring my parents' "estate" down to $1600 in assets so that they can qualify for a Medicaid Spend-Down to keep my mom comfortable for a couple more months. There is something so completely disheartening and maddening about politicizing health care and how on earth did we come to this place?
We may be able to access Mom's $25,000 lifetime limit on Hospice Care for continued care at McLean. And how much does that buy us? 38 days of inpatient care. 38 days. 38 days ago we were coming home from a "vacation" with Mom. Where could we be 38 days from now? Taking Mom home from McLean with a catheter, unable to feed herself, in breathtaking pain... without help because we've exhausted our "lifetime limit"? How unbelievably inhuman can this nation be?
There is a part of me that is embarrassed to write this, to put myself out there so much... to be so enraged by politics. But how can I not? How can I give into that little faux moderate conformist within me, submit to its attempts at pulling me back with its "can't we all just get along slogan"? It's too important to let this go and pretend it doesn't hit me right at home. It's too much tonight. Too much in one day.
Sunday, September 6, 2009
September
As with many things, change becomes more palpable to us as we spend more time with it; either that or we just get sick of thinking and talking about how much we hate it. As much as things have changed over the couple of weeks since I last posted, they have remained consistently tumultuous.
Mama Marian is in the best of hands at McLean, where she has been since discharging from the hospital on the 20th of August. Although we have had to bite, scratch, kick, and claw our way through at times, we have had some very willing collaborators at McLean, and that has made all the difference. We have thus far received 20 days of Blue Cross and Blue Shield's blessing for Mom to be treated as a "Skilled Nursing" patient at McLean and therefore have not yet had to sacrifice any of her most precious Hospice benefits. The value of this is largely understated, as her lifetime cap on Hospice amounts to only 38 days of inpatient care, whereas she is technically eligible for 140 days of Skilled Nursing care. At over $600 per day, we have considered selling life insurance plans, our homes, and our souls for more time.
After everything, it seems Mom is the most content in a nursing home. She has a private room with a sliding glass door facing the woods and an entourage of fabulous people able and willing to help make her the most comfortable. This, at times, is quite a feat, as Mama Marian continues to have extreme pain, restlessness, and agitation at times and her sleep "patterns" are about as varied as medications she has been prescribed.
Dad visits two to three times each day and typically eats breakfast with her, takes her outside in her rolling chair, and advocates for her 24/7. Jeff, Dou, and Lorien came for about a week and left this past Monday after spending lots of time visiting with Mama Marian and even taking her home for a couple of hours with Dad that Friday afternoon. And Mom has had visitors galore from friends, family, and co-workers. She even had a spa treatment, courtesy of some very good friends from Canton (including a pedicure of which I am very jealous!)
For much of the time, Mama Marian has been in good spirits. We do not know what is going on with the tumor because it has been weeks since she has had any kind of scan, but it is somewhat irrelevant these days. Jody, Indiana, and I are here visiting this weekend and were able to spend some time with Mom between some hours of much needed sleep yesterday (for her and, as it turns out, for me too!) Mom continues to crack us up on a regular basis. According to Dou, she revealed some information a week or so ago and let everyone in on her big secret... She apparently announced that she had something to tell everyone and followed this with a very lucid declaration that she is a lesbian. Who knew? Dad is still considering writing down some of Mom's best quotes over the last couple of months, but we can't seem to remember the majority of them.
It is difficult to see her like this sometimes, even when she seems content and restful. She cannot do anything for herself anymore (standing, sitting, transferring, bathing, eating, drinking, etc...) and it seems that her bladder has gone on strike, so she has a catheter all of the time now. Mom did develop a horrible UTI that, although I was unaware this was even possible, was viral and required visitors to gown-up before they came into her room! However, this seems to be on its way out.
Two of Mama Marian's best friends from childhood, Ellen and Mika, came to visit this past week and spent two whole days with Mom. I mentioned this to her yesterday and she said, "yes it was wonderful!" She has also had a visit from her cousins, Denny and Char, and their beautiful golden retriever, Rusty. Animals are a valued commodity at McLean and are welcomed by the staff and the majority of the residents as well. Indy made his rounds yesterday, visited the nurses, the coy pond, and even the chapel!
Again, I cannot say enough about how much of a difference people (and pets!) continue to make for Mama Marian and for all of us. Mom continues to receive mail, even directly to her room at McLean, and the outpouring of visitors astounds me! As much as these changes continue to wear at us, they are softened by the support and love of those around us all.
Mama Marian is in the best of hands at McLean, where she has been since discharging from the hospital on the 20th of August. Although we have had to bite, scratch, kick, and claw our way through at times, we have had some very willing collaborators at McLean, and that has made all the difference. We have thus far received 20 days of Blue Cross and Blue Shield's blessing for Mom to be treated as a "Skilled Nursing" patient at McLean and therefore have not yet had to sacrifice any of her most precious Hospice benefits. The value of this is largely understated, as her lifetime cap on Hospice amounts to only 38 days of inpatient care, whereas she is technically eligible for 140 days of Skilled Nursing care. At over $600 per day, we have considered selling life insurance plans, our homes, and our souls for more time.
After everything, it seems Mom is the most content in a nursing home. She has a private room with a sliding glass door facing the woods and an entourage of fabulous people able and willing to help make her the most comfortable. This, at times, is quite a feat, as Mama Marian continues to have extreme pain, restlessness, and agitation at times and her sleep "patterns" are about as varied as medications she has been prescribed.
Dad visits two to three times each day and typically eats breakfast with her, takes her outside in her rolling chair, and advocates for her 24/7. Jeff, Dou, and Lorien came for about a week and left this past Monday after spending lots of time visiting with Mama Marian and even taking her home for a couple of hours with Dad that Friday afternoon. And Mom has had visitors galore from friends, family, and co-workers. She even had a spa treatment, courtesy of some very good friends from Canton (including a pedicure of which I am very jealous!)
For much of the time, Mama Marian has been in good spirits. We do not know what is going on with the tumor because it has been weeks since she has had any kind of scan, but it is somewhat irrelevant these days. Jody, Indiana, and I are here visiting this weekend and were able to spend some time with Mom between some hours of much needed sleep yesterday (for her and, as it turns out, for me too!) Mom continues to crack us up on a regular basis. According to Dou, she revealed some information a week or so ago and let everyone in on her big secret... She apparently announced that she had something to tell everyone and followed this with a very lucid declaration that she is a lesbian. Who knew? Dad is still considering writing down some of Mom's best quotes over the last couple of months, but we can't seem to remember the majority of them.
It is difficult to see her like this sometimes, even when she seems content and restful. She cannot do anything for herself anymore (standing, sitting, transferring, bathing, eating, drinking, etc...) and it seems that her bladder has gone on strike, so she has a catheter all of the time now. Mom did develop a horrible UTI that, although I was unaware this was even possible, was viral and required visitors to gown-up before they came into her room! However, this seems to be on its way out.
Two of Mama Marian's best friends from childhood, Ellen and Mika, came to visit this past week and spent two whole days with Mom. I mentioned this to her yesterday and she said, "yes it was wonderful!" She has also had a visit from her cousins, Denny and Char, and their beautiful golden retriever, Rusty. Animals are a valued commodity at McLean and are welcomed by the staff and the majority of the residents as well. Indy made his rounds yesterday, visited the nurses, the coy pond, and even the chapel!
Again, I cannot say enough about how much of a difference people (and pets!) continue to make for Mama Marian and for all of us. Mom continues to receive mail, even directly to her room at McLean, and the outpouring of visitors astounds me! As much as these changes continue to wear at us, they are softened by the support and love of those around us all.
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