I posted this on Facebook, but I felt the need to post this simple truth here also:
In my entire life, I don't think I have shed as many tears as those that have been caused by Alzhiemer's Disease.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Friday, February 10, 2012
Thursday, February 9, 2012
24 Hours
In 24 hours: got a notice of Deposition for Brandon's car accident last year, Mike's aide called in sick, Mike's breathing heavy, he's got the beginning of two more sores (on his back by ribs) and found out the aide that had worked the last 2 Saturday's cannot work with us anymore.
How much can one person take before they give up?
I know things can get worse, but can't I get SOME kind of break?!
How much can one person take before they give up?
I know things can get worse, but can't I get SOME kind of break?!
Friday, February 3, 2012
Medicaid Mess
I hadn't written about this previously because it upsets me SO MUCH.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.
Monday, January 30, 2012
Acceptance
For the last few weeks, Mike's legs and ankles have been swollen...edema. It's a sign that his kidney's aren't functioning well. This past Friday, I came home to find Mike breathing really heavy. He was burping all night long and his acid reflux was in full force. As he burped, stuff would come up, then he would swallow, then cough as he choked down what just came up. On Saturday we had a new aide (an entirely different story and one in which I will share in a different post...it has to do with Medicaid) and I was very careful to show her how to feed Mike. Both Saturday and Sunday Mike had not urinated during the day, only overnight. Today he woke up dry, but DID go during the day. I cut back his food even more, but tonight he still had the acid reflux problem. I've been up with him pretty much three nights in a row. He has a sore on his toe as well as an opening on his lip on the side of his mouth where he takes in food/liquid. He still has his 5 other bed sores.
When I write all this out, I realize it doesn't sound too good. I told someone just today that our BIGGEST problem is going to be accepting "it" when it's about to happen. For 5-6 years now, every time Mike would get sick, we were told that "it was the beginning of the end". I can't even tell you how many times professionals told us this. Thinking back, it was a complete disservice to us, because when the time does come, I'm not sure we will believe them.
As is usual for my family, I get my children's hand me downs as far as technology goes. I recently acquired my son's old iPod. Since I have been in - and up - with Mike these last few nights, I've decided to play him "our" songs. We lay together and listen as our history plays before us. As each song is played, I can remember exactly where we were and what we were doing. I lie there and cry that all we had hoped for our future will never come true. I talk to Mike and let him know how happy he's made me and how proud I am of him. I tell him what a good father he is. I hope (and I truly believe) that he can hear me and know what I'm saying. I tell him all this quite frequently, because I honestly do not know when his time will come. It never hurts to say I LOVE YOU too often.
When I write all this out, I realize it doesn't sound too good. I told someone just today that our BIGGEST problem is going to be accepting "it" when it's about to happen. For 5-6 years now, every time Mike would get sick, we were told that "it was the beginning of the end". I can't even tell you how many times professionals told us this. Thinking back, it was a complete disservice to us, because when the time does come, I'm not sure we will believe them.
As is usual for my family, I get my children's hand me downs as far as technology goes. I recently acquired my son's old iPod. Since I have been in - and up - with Mike these last few nights, I've decided to play him "our" songs. We lay together and listen as our history plays before us. As each song is played, I can remember exactly where we were and what we were doing. I lie there and cry that all we had hoped for our future will never come true. I talk to Mike and let him know how happy he's made me and how proud I am of him. I tell him what a good father he is. I hope (and I truly believe) that he can hear me and know what I'm saying. I tell him all this quite frequently, because I honestly do not know when his time will come. It never hurts to say I LOVE YOU too often.
Monday, January 23, 2012
Peace of Mind
We all know that money does NOT buy happiness, but it DOES give you PEACE OF MIND so that you can:
- Have health insurance
- pay for car repairs
- go to the dentist
- provide heat, electrical and water to your home (and hope for no major problems)
- keep the refrigerator stocked
- buy medicine
- make sure your children have winter jackets
Alzheimer's Disease stripped my family of a second income. I am not a single mom by choice, I don't get alimony or death benefits. I struggle each and every day just to take care of the basics. Unless you are independantly wealthy, caring for a loved one with Alzheimer's can bring you near Bankruptcy. I've never had so little in the 11 years since Mike was diagnosed and I am scared. I've instilled in my children to always "do the right thing", yet it can become a heavy load to bear when you see so many people not doing what's right, getting praise. I'm not talking friends and acquaintences.
Cast of Jersey Shore - all they do is get drunk, have sex with whomever they want, and complain about work, yet they make thousands and thousands of dollars in the process.
The Kardashians - one of them was on LIVE today complaining (seriously complaining)about being disappointed that she missed out on her fairy tale life. Serisouly, what exactly do those Kardashian's do that they deserve all the money they make??
I don't want to be bitter, really I don't and I've gotten this far without jumping on that soapbox, but when I see my kids miss out on the basics and they have sacrificed SO MUCH and do SO MUCH more than those people ever will, I can't help but feel bitter.
I feel defeated, I feel let down my our system (we had a bad experience with Social Services and Medicaid last week. We're still waiting for problems from that) and I am exhausted.
I know I have some great readers and all I ask is that you say some prayers for us. I can't remember ever being this bad off and I DO BELIEVE in the pwoer of prayer.
God bless you all for your love and support.
- Have health insurance
- pay for car repairs
- go to the dentist
- provide heat, electrical and water to your home (and hope for no major problems)
- keep the refrigerator stocked
- buy medicine
- make sure your children have winter jackets
Alzheimer's Disease stripped my family of a second income. I am not a single mom by choice, I don't get alimony or death benefits. I struggle each and every day just to take care of the basics. Unless you are independantly wealthy, caring for a loved one with Alzheimer's can bring you near Bankruptcy. I've never had so little in the 11 years since Mike was diagnosed and I am scared. I've instilled in my children to always "do the right thing", yet it can become a heavy load to bear when you see so many people not doing what's right, getting praise. I'm not talking friends and acquaintences.
Cast of Jersey Shore - all they do is get drunk, have sex with whomever they want, and complain about work, yet they make thousands and thousands of dollars in the process.
The Kardashians - one of them was on LIVE today complaining (seriously complaining)about being disappointed that she missed out on her fairy tale life. Serisouly, what exactly do those Kardashian's do that they deserve all the money they make??
I don't want to be bitter, really I don't and I've gotten this far without jumping on that soapbox, but when I see my kids miss out on the basics and they have sacrificed SO MUCH and do SO MUCH more than those people ever will, I can't help but feel bitter.
I feel defeated, I feel let down my our system (we had a bad experience with Social Services and Medicaid last week. We're still waiting for problems from that) and I am exhausted.
I know I have some great readers and all I ask is that you say some prayers for us. I can't remember ever being this bad off and I DO BELIEVE in the pwoer of prayer.
God bless you all for your love and support.
Tuesday, January 17, 2012
Interviews and Studies
The last few weeks the kids and I have participated in a few projects. For one we each spoke to a social worker from Hunter College who was doing research on the affects Young Onset Alzheimer's Disease has on children of a patient. We try to do what we can whether it be advocate, research, interviews etc., whatever it takes to get this disease noticed more. It is not just an old person's disease and it affects much more than just memory. It's frightening to me how many people still think Alzheimer's is "just a memory problem". So much awareness needs to be made and I do what I can.
The next project we were involved in was with a Graduate student at Columbia University journalism school. She wanted to do her "final" project on Young Onset Alzheimer's Disease. She did some research, googled it and found both our name and that of the head of the Alzheimer's Association here on Long Island. She then contacted the Association who gave us her information to see if we would be interested in talking with her. She interviewed as many people as possible, patients as well as family members, to make her story more believable and compelling. It was a pleasure to meet this French student studying in New York and we feel she will definitely do this topic justice.
I'm going to try to get to Washington DC again this year for the Advocacy Forum sponsored by the Alzheimer's Association. I felt so empowered when I went two years ago. The concerns I have in making this happen is making sure Mike will be well taken care of and of course, the cost of this two 1/2 day event. Advocating in DC is not cheap (between hotel, travel expenses and program fees) but I am going to do my best to make it happen.
Let's face it, NOTHING about this disease is easy, hence the reason I want my representatives to hear me!
The next project we were involved in was with a Graduate student at Columbia University journalism school. She wanted to do her "final" project on Young Onset Alzheimer's Disease. She did some research, googled it and found both our name and that of the head of the Alzheimer's Association here on Long Island. She then contacted the Association who gave us her information to see if we would be interested in talking with her. She interviewed as many people as possible, patients as well as family members, to make her story more believable and compelling. It was a pleasure to meet this French student studying in New York and we feel she will definitely do this topic justice.
I'm going to try to get to Washington DC again this year for the Advocacy Forum sponsored by the Alzheimer's Association. I felt so empowered when I went two years ago. The concerns I have in making this happen is making sure Mike will be well taken care of and of course, the cost of this two 1/2 day event. Advocating in DC is not cheap (between hotel, travel expenses and program fees) but I am going to do my best to make it happen.
Let's face it, NOTHING about this disease is easy, hence the reason I want my representatives to hear me!
Friday, January 6, 2012
Happy Birthday Mike!
Mike's birthday was January 5th...he turned 47.
One of his gifts was a Pittsburgh Steeler T-Shirt (his all time favorite team. He fell in love with their uniforms when he was a little kid!)
He got a Carvel cake and we have him a little before he went to bed. Yummy!
Becomming quite a bit emotional after looking through new found pictures, I decided to post a photo taken back in 1997. Courtney had just gotten an Easy Bake Oven for Christmas so she and Brandon (with a little help from me) decided they wanted to make Mike a cake for his birthday. They were SO proud it their work. I LOVE this picture!
HAPPY BIRTHDAY MIKE a.k.a "The Energizer Bunny"!
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