This will be my last blog as a caregiver. Jerry passed away peacefully on October 1st. Part of me is thankful his battle with cancer was short but the selfish part of me wishes he were here no matter what shape he was in.
I haven't posted much lately because my time was spent taking care of him. I cherished every moment of it too and would do it again and again if it would bring him back.
On September 27 Jerry's kidneys started shutting down. I took him to the ER where it was discovered he still had an infection. They admitted him to the hospital and sent him up to the oncology floor where his favorite nurses were. He was there until Sunday when they moved him to ICU because his blood pressure kept dropping and his heart rate was to high, plus his kidneys were getting worse.
The ICU he was in was great. It had windows in it and was very light. The ICU nurse told me they did not have any rules on the number of visitors at one time or how many people could be in the room. So I posted on his Facebook page what was going on and all of his friends started arriving on Monday. He was so happy to see them.
The palliative doctor came in and talked to Jerry for a minute then asked if he could talk to me in a different room. He told us that Jerry's kidneys were completely shut down and the infection wasn't getting any better. Jerry was having trouble breathing and kept asking us to sit him up so he could cough it up, but it wasn't working. The doctor suggested we make Jerry comfortable and let him go with the least amount of discomfort. After weighing all the options we decided it was for the best.
Monday night came and I stayed by his side the whole time. I tried to sleep but kept waking up to check his vitals on the monitor. He was steady all night. Tuesday people started arriving mid morning to visit with Jerry. By this time he was unconscious due to the morphine. As family and friends arrived his vitals started falling. Everyone took a moment to whisper to Jerry about their love for him. I called my two children who couldn't get in until the next day so they could talk to him on the phone. Tuesday afternoon a priest came by to give him last rights. The room was full of family and friends as I held his hand on his right and Patsy held his hand on his left. Even the nurse from the oncology floor was in the room. Once the priest finished giving the last rights Jerry took his last breath. He had gone home to be with our Lord and Savior.
His funeral was simple, the way he liked things. He wore his University of Texas Longhorn Polo shirt, jeans, and his boots. I left his watch and wedding band on him because he was very proud of those two things. The funeral was held outdoors and everyone wore casual clothing.
Jerry loved the Texas Longhorns almost as much as he loved me. So in his honor many were wearing University of Texas attire even though they were Oklahoma Sooner fans. The first song to play was George Strait's The Cowboy Rides Away. The second song was On Eagles Wings. The final song was the University of Texas Fight Song. Everyone formed the "Hook Em Horns" symbol with their hand. It was something Jerry would have been very proud of.
Now I'm trying to put my life back together. I plan to remodel the house the way Jerry and I had wanted to. Life will continue without him and although a part of me died with him I will continue too knowing one day I will be with him again.
Before I finish I would like to say a few things. First I would like to thank everyone who has prayed for us, helped us, advised us, sent cards and money to us, and anything else that is slipping my mind at the moment. I couldn't have done any of it without all of you.
Second cherish your loved ones because they may not be here tomorrow. When you get mad because they didn't put the cap back on the toothpaste or they didn't put the toilet seat down, think about them not being there at all.
And last for anyone who doesn't think prayer works I say Jerry was proof. No he wasn't healed, which is what I wanted, but the one thing I prayed for as much as him being healed was that he remain comfortable. I prayed that he wouldn't have much pain or nausea. The chemo didn't make him nauseated and the pain was controllable the whole time. I think the most pain pills he took in one day was 3 and that was because he couldn't take ibuprofen.
Thank you,
Joni
Tuesday, October 8, 2013
Wednesday, September 18, 2013
Financial Hickups and More
I couple of little things happened in my financial world yesterday that were good. And one really big bad thing today.
Yesterday morning I found out that my former dental office (Monarch Dental) finally reimbursed me the $1400 they over billed me. They were supposed to do that in April. It goes on my Flex Spending Account which I also found out I can use to get Jerry's medication and other things medical, even though he isn't on my insurance. I guess in a way it's good they didn't reimburse me until now.
The second thing that happened was that Jerry received another money order from "Anonymous". Thank you to Anonymous.
The bad thing that happened today was I can't refinance the house in my name. I wasn't really given a reason, but I'm assuming I don't make enough. I've got to find someway to stay in this house. Jerry doesn't need to be moved. For those who don't know Jerry bought the house before we met so I'm not on the mortgage. They said they would mail me a letter.
I guess I need to find an attorney to see what I need to do about the house. Anyone know a good cheap one?
Patsy found several place we can get his medication either free or cheap. That is a good thing.
Jerry is having a rough day today. He's not eating again and says he feels weaker. I'm hoping everything will be better tomorrow. But the infection seems to be gone. He should start Chemo again next week. He's not nearly as cranky as he was over the weekend. Probably because he's home and not being treated like a pin cushion.
His Physical Therapist came in to evaluate him on Monday. I think that will help Jerry. He was in better spirits after the guy left and slept very well. I'm really happy they got someone to come out.
Yesterday morning I found out that my former dental office (Monarch Dental) finally reimbursed me the $1400 they over billed me. They were supposed to do that in April. It goes on my Flex Spending Account which I also found out I can use to get Jerry's medication and other things medical, even though he isn't on my insurance. I guess in a way it's good they didn't reimburse me until now.
The second thing that happened was that Jerry received another money order from "Anonymous". Thank you to Anonymous.
The bad thing that happened today was I can't refinance the house in my name. I wasn't really given a reason, but I'm assuming I don't make enough. I've got to find someway to stay in this house. Jerry doesn't need to be moved. For those who don't know Jerry bought the house before we met so I'm not on the mortgage. They said they would mail me a letter.
I guess I need to find an attorney to see what I need to do about the house. Anyone know a good cheap one?
Patsy found several place we can get his medication either free or cheap. That is a good thing.
Jerry is having a rough day today. He's not eating again and says he feels weaker. I'm hoping everything will be better tomorrow. But the infection seems to be gone. He should start Chemo again next week. He's not nearly as cranky as he was over the weekend. Probably because he's home and not being treated like a pin cushion.
His Physical Therapist came in to evaluate him on Monday. I think that will help Jerry. He was in better spirits after the guy left and slept very well. I'm really happy they got someone to come out.
Sunday, September 15, 2013
Being a Caregiver Sux
Jerry had been running a low grade fever all last weekend but it was so low I knew the doctors wouldn't do anything so I decided to wait. On Monday I took him to see his neurologist. His blood pressure was very low and even though the neurologist didn't say anything about it I decided to take him down to Oncology to see if they could give him some fluids. They got him in and checked his blood pressure again. It was 66/53 so they put him in the hospital. The doctor said if I had not brought him down when I did it would have been bad. Now I'm afraid to leave him because that makes 2 times I've stopped something bad happening, even though doctors and nurses were around both times.
He spent the last week in the hospital due to an infection. He gained around 8 pounds because he ate Sweet and Sour Chicken every day. While he was in the hospital he improved in some ways but seems to be worse in others. On Thursday they gave him a mild sedative so they could replace his drain. That "mild" sedative put him into a sound sleep with him only taking 4 breaths a minute. The nurses were watching him closely but didn't want to give him something to wake him up due to the side affects. After 4 hours though they decided they needed to. He woke up and thought he had the procedure the day before instead of that day.
He was sent home yesterday with a strong antibiotic (that I had to pay full price for). That's when I noticed things were different. He was much weaker than he was when he went into the hospital. He was also very angry and says mean things. He said something about wanting Sweet and Sour Chicken from Panda Express so I told him I needed to learn how to make it. He told me it wouldn't be nearly as good as Panda Express was. I asked him how he knew because I had never made it.
He has started yelling at total strangers when they are trying to help him. That isn't like him at all. I know it's because he's angry and depressed over his illness but at the same time it's embarrassing. Thank God these people are used to that kind of behavior. A Physical Therapist is coming to our home starting tomorrow. I hope he doesn't give them a hard time.
I find myself crying all the time it seems like. I've gotten turned down for all kind of financial help so far. Jerry has gotten approved for disability but it won't start until January 1st. Medicare will start 2 years after that. We were turned down for Medicaid because I make to much money and we were turned down for a mortgage loan modification because I don't make enough money. I asked them if the payment could be deferred for a few months and they told me they didn't do that (even though according to the government they are supposed to). So it looks like our home of 15 years will be foreclosed on even though the owner is terminally ill. I'm starting to get desperate.
The Bible tells me God has a plan and I just need to relax and let him take care of things. But I'm afraid I'll have to put Jerry in a nursing home of some kind because I can't take care of him properly. Of course I can't afford that either. Once I put him on my insurance I won't be able to afford my home or an apartment.
Now you know why I've titled this blog "Being a Caregiver Sux". But at the same time I will continue doing what I need to do because I love him.
He spent the last week in the hospital due to an infection. He gained around 8 pounds because he ate Sweet and Sour Chicken every day. While he was in the hospital he improved in some ways but seems to be worse in others. On Thursday they gave him a mild sedative so they could replace his drain. That "mild" sedative put him into a sound sleep with him only taking 4 breaths a minute. The nurses were watching him closely but didn't want to give him something to wake him up due to the side affects. After 4 hours though they decided they needed to. He woke up and thought he had the procedure the day before instead of that day.
He was sent home yesterday with a strong antibiotic (that I had to pay full price for). That's when I noticed things were different. He was much weaker than he was when he went into the hospital. He was also very angry and says mean things. He said something about wanting Sweet and Sour Chicken from Panda Express so I told him I needed to learn how to make it. He told me it wouldn't be nearly as good as Panda Express was. I asked him how he knew because I had never made it.
He has started yelling at total strangers when they are trying to help him. That isn't like him at all. I know it's because he's angry and depressed over his illness but at the same time it's embarrassing. Thank God these people are used to that kind of behavior. A Physical Therapist is coming to our home starting tomorrow. I hope he doesn't give them a hard time.
I find myself crying all the time it seems like. I've gotten turned down for all kind of financial help so far. Jerry has gotten approved for disability but it won't start until January 1st. Medicare will start 2 years after that. We were turned down for Medicaid because I make to much money and we were turned down for a mortgage loan modification because I don't make enough money. I asked them if the payment could be deferred for a few months and they told me they didn't do that (even though according to the government they are supposed to). So it looks like our home of 15 years will be foreclosed on even though the owner is terminally ill. I'm starting to get desperate.
The Bible tells me God has a plan and I just need to relax and let him take care of things. But I'm afraid I'll have to put Jerry in a nursing home of some kind because I can't take care of him properly. Of course I can't afford that either. Once I put him on my insurance I won't be able to afford my home or an apartment.
Now you know why I've titled this blog "Being a Caregiver Sux". But at the same time I will continue doing what I need to do because I love him.
Friday, September 6, 2013
Good News Bad News
Jerry had gained 4 pounds when he was weighed at the infusion place today. We both felt like celebrating a little. And then they checked his blood pressure. Sitting down it was fine but when he stood up it would drop. So he got two bags of IV fluids.
This morning we got a call from the Social Security Disability office. They have approved Jerry's disability, but it won't start until January 1st, 2014. I thought at first it was a mistake because we had been told it would be escalated due to his illness. Well it seems this is standard practice no matter who gets disability. It was the application that was escalated. I was so mad and unhappy about it that I cried on Jerry's shoulder. I haven't cried in front of him much.
Yesterday the Medicaid office called me again. The Financial services at the doctors office sent a form to Medicaid called a MASH form. They asked me how much I made, then asked me 10 million other questions. Finally they told me I made to much money. I thought why didn't you just say that in the first place.
Did you ever think about calling your boss and saying you wanted a pay cut? At that point I was seriously considering it. But then I figured if I put him on my insurance at work it would be the same either way.
I went to talk to the financial services while at the infusion place today. She confirmed that he had been denied for Medicaid, so she had me fill out some other forms and get Jerry to sign one. If these are approved they will cover his medication and chemo. I point blank asked her if she thought I should put Jerry on my insurance or wait a little longer. She suggested I go ahead and add him to my insurance until January 1st. Then Medicaid should go ahead and kick in since he will officially be disabled. That actually made me feel a little better because now I feel like things are falling into place.
While we were at the infusion place a family came in with a cake that said "F U Cancer". They were celebrating the girls last chemo treatment. And when I say celebrating I do mean celebrating. It got very loud in there.
Its funny but everyone there is like a big extended family of all ages. Everyone has one thing in common. And because of that everyone is cheerful, laughing, exchanging stories about when they lost their hair or some other bizarre story. Things that we wouldn't normally share outside of the infusion place. They also help others by sharing information about everything from keeping nausea at bay to financial issues. It seems there are quite a few people in the same boat that Jerry and I are in.
My day ended with the vet that I took Dixie too leaving me a message telling me I'm their 100th customer and I won a bath, nail trim and some other things. Now the big decision is which dog do I take there.
This morning we got a call from the Social Security Disability office. They have approved Jerry's disability, but it won't start until January 1st, 2014. I thought at first it was a mistake because we had been told it would be escalated due to his illness. Well it seems this is standard practice no matter who gets disability. It was the application that was escalated. I was so mad and unhappy about it that I cried on Jerry's shoulder. I haven't cried in front of him much.
Yesterday the Medicaid office called me again. The Financial services at the doctors office sent a form to Medicaid called a MASH form. They asked me how much I made, then asked me 10 million other questions. Finally they told me I made to much money. I thought why didn't you just say that in the first place.
Did you ever think about calling your boss and saying you wanted a pay cut? At that point I was seriously considering it. But then I figured if I put him on my insurance at work it would be the same either way.
I went to talk to the financial services while at the infusion place today. She confirmed that he had been denied for Medicaid, so she had me fill out some other forms and get Jerry to sign one. If these are approved they will cover his medication and chemo. I point blank asked her if she thought I should put Jerry on my insurance or wait a little longer. She suggested I go ahead and add him to my insurance until January 1st. Then Medicaid should go ahead and kick in since he will officially be disabled. That actually made me feel a little better because now I feel like things are falling into place.
While we were at the infusion place a family came in with a cake that said "F U Cancer". They were celebrating the girls last chemo treatment. And when I say celebrating I do mean celebrating. It got very loud in there.
Its funny but everyone there is like a big extended family of all ages. Everyone has one thing in common. And because of that everyone is cheerful, laughing, exchanging stories about when they lost their hair or some other bizarre story. Things that we wouldn't normally share outside of the infusion place. They also help others by sharing information about everything from keeping nausea at bay to financial issues. It seems there are quite a few people in the same boat that Jerry and I are in.
My day ended with the vet that I took Dixie too leaving me a message telling me I'm their 100th customer and I won a bath, nail trim and some other things. Now the big decision is which dog do I take there.
Sunday, September 1, 2013
Sept. 1, 2013
Last night I started sleeping on the couch. That is why I wanted to baby monitor so I could hear Jerry if he needed me and not have him get out of bed to come in the living room. Every night he would wake me up to give him a pain pill. This morning when I woke up I saw that it was 6 AM and he had not woke me up all night long. I panicked and ran in the bed room. He was sitting up in bed watching TV. I asked him if he needed a pain pill during the night and he said no he did not.
I then went back to the couch and slept another two hours, woke up and made coffee then went back to sleep for another half our. I finally got up around 8:30 AM took care of Jerry and fell asleep again. This time I slept until 12:30 PM.
I played handy-woman today. I changed the shower head in Jerry's shower to one that has a hose on it. Then I put the chair in it so he could sit down to shower. I'm hoping he won't be so exhausted after he showers not. I then set up the sprinklers around the house. I put them on a timer so I wouldn't have to remember to turn them on. Jerry felt kind of bad that he could not help.
Jerry had a pretty good day. He ate a little and drank some. He hasn't needed much nausea medication or pain pills today.
Patsy and Paul came over and brought the baby monitor so I would be able to hear Jerry at night. It seems to work pretty well so far.
Shawn came home tonight. He unloaded his car then realized he wasn't feeling so well so he decided to stay at his dads so that if he were coming down with something he wouldn't give it to Jerry.
Chanda told us she wouldn't be moving in with us after all. She has decided to stay in Florida. Her boyfriend is moving in with her there. I'm very happy for her.
Not much happened today, thank the good Lord. Still I feel like I ran a marathon.
I then went back to the couch and slept another two hours, woke up and made coffee then went back to sleep for another half our. I finally got up around 8:30 AM took care of Jerry and fell asleep again. This time I slept until 12:30 PM.
I played handy-woman today. I changed the shower head in Jerry's shower to one that has a hose on it. Then I put the chair in it so he could sit down to shower. I'm hoping he won't be so exhausted after he showers not. I then set up the sprinklers around the house. I put them on a timer so I wouldn't have to remember to turn them on. Jerry felt kind of bad that he could not help.
Jerry had a pretty good day. He ate a little and drank some. He hasn't needed much nausea medication or pain pills today.
Patsy and Paul came over and brought the baby monitor so I would be able to hear Jerry at night. It seems to work pretty well so far.
Shawn came home tonight. He unloaded his car then realized he wasn't feeling so well so he decided to stay at his dads so that if he were coming down with something he wouldn't give it to Jerry.
Chanda told us she wouldn't be moving in with us after all. She has decided to stay in Florida. Her boyfriend is moving in with her there. I'm very happy for her.
Not much happened today, thank the good Lord. Still I feel like I ran a marathon.
Saturday, August 31, 2013
Good Day of Mixed Emotions
Today was a fairly good day, but filled with mixed emotions. I finally sat down next to Jerry and discussed issues that everyone needs to discuss before this time comes. It was one of the most painful things I've ever done.
We discussed an Advance Directive for him, but decided to finish our discussion with the doctor. We went over things like where he would like to be buried, what music he wanted played at his funeral and what he wanted to be buried in. Jerry, being the biggest Longhorn fan, wants the University of Texas school song and fight song played at his funeral. He's even tossing around wearing a Longhorn t-shirt. He also wants a George Strait song called "The Cowboy Rides Away". That is one of his favorite songs and one that George Strait plays at the end of his concerts. I told him what ever he wanted I would make sure it happened.
We had several visitors today. Kevin and Brenda came by to visit. They also worked on the yard. I said something about the shrubs needing trimmed and not only did they trim the shrubs but mowed the yard, weeded, and edged it. I am so grateful to them because when I try to do it I'm sick for 3 days. They also helped me out with a shower chair for Jerry and a timer for watering the yard, because I always forget to do it.
After they left Jerry and I both took a long nap, because we were both up half the night with Dixie being sick. I took her to the vet because I was sure she swallowed something that was stuck in her throat. But she is fine, just a scratched throat. The vet is a new one in this neighborhood but I didn't want to take her to her normal vet because it would be a 5 hour wait. I told him my situation at home and said I couldn't afford a huge vet bill if it could be helped so he only charged me $50 and that included a shot and medication. I really did like him, he reminded me of a younger version of our regular vet.
This evening our neighbor, Phil came by to talk to Jerry. He came by once before right after Jerry got out of the hospital, but had not been back. I thought he hadn't been back because of the Devil dog that bit him last time. But that wasn't the case. He had been ill and didn't want to give it to Jerry which I much appreciate. We talked about the Lord and the Lords sees everything where we only see out the side window. I think it lifted Jerry's spirits some.
Jerry ate some today, not much but some. He did drink more though and I am thankful for that. He is trying I think. His pain seems to be getting worse but he says its just his head aches. It turns out that head aches are one of the side affects of a nausea pill he's taking. He hasn't seemed as nauseated today as he has the last few days so that is good.
He's been a little depressed today because he thought some people that are important to him would have been by, but they haven't yet. I have to admit I got a little upset too because I thought they were being selfish if they were staying away because they are afraid of their emotions. But then I realized that's the way some people deal with things like this. Jerry and I just have to remember they do care and they will come when they are ready.
So all in all it was a good day I think. Lets all pray for more of these.
We discussed an Advance Directive for him, but decided to finish our discussion with the doctor. We went over things like where he would like to be buried, what music he wanted played at his funeral and what he wanted to be buried in. Jerry, being the biggest Longhorn fan, wants the University of Texas school song and fight song played at his funeral. He's even tossing around wearing a Longhorn t-shirt. He also wants a George Strait song called "The Cowboy Rides Away". That is one of his favorite songs and one that George Strait plays at the end of his concerts. I told him what ever he wanted I would make sure it happened.
We had several visitors today. Kevin and Brenda came by to visit. They also worked on the yard. I said something about the shrubs needing trimmed and not only did they trim the shrubs but mowed the yard, weeded, and edged it. I am so grateful to them because when I try to do it I'm sick for 3 days. They also helped me out with a shower chair for Jerry and a timer for watering the yard, because I always forget to do it.
After they left Jerry and I both took a long nap, because we were both up half the night with Dixie being sick. I took her to the vet because I was sure she swallowed something that was stuck in her throat. But she is fine, just a scratched throat. The vet is a new one in this neighborhood but I didn't want to take her to her normal vet because it would be a 5 hour wait. I told him my situation at home and said I couldn't afford a huge vet bill if it could be helped so he only charged me $50 and that included a shot and medication. I really did like him, he reminded me of a younger version of our regular vet.
This evening our neighbor, Phil came by to talk to Jerry. He came by once before right after Jerry got out of the hospital, but had not been back. I thought he hadn't been back because of the Devil dog that bit him last time. But that wasn't the case. He had been ill and didn't want to give it to Jerry which I much appreciate. We talked about the Lord and the Lords sees everything where we only see out the side window. I think it lifted Jerry's spirits some.
Jerry ate some today, not much but some. He did drink more though and I am thankful for that. He is trying I think. His pain seems to be getting worse but he says its just his head aches. It turns out that head aches are one of the side affects of a nausea pill he's taking. He hasn't seemed as nauseated today as he has the last few days so that is good.
He's been a little depressed today because he thought some people that are important to him would have been by, but they haven't yet. I have to admit I got a little upset too because I thought they were being selfish if they were staying away because they are afraid of their emotions. But then I realized that's the way some people deal with things like this. Jerry and I just have to remember they do care and they will come when they are ready.
So all in all it was a good day I think. Lets all pray for more of these.
Wednesday, August 28, 2013
August 28, 2013
Today was a tough day. Jerry won't eat and he's taking more pills today than in the past. I've tried everything to get him to eat but he won't. He's even slowed down eating Popsicles.
I did a lot of crying today over him not eating, the fatigue, and the financial end of things. He is so weak it scares me when he stands up.
It seems like right after he has chemo he has a ton of energy, but it starts dropping during the week. This is his "free" week so no chemo, hence his extreme fatigue (I think). I've called the doctors and I don't think they understand what I'm telling them.
Today I asked him if he would agree to a feeding tube if needed. He said yes at this point he would do it but I would have to change the bag. I told him I have no problem doing that. So I'm going to discuss it with his doctor's nurse tomorrow. They might not do it because of the blood thinners.
I got an email from a Patient Advocate organization today. I had asked them if it was law yet where insurance companies had to except patients with pre-existing conditions. Guess what, its not until January 1st, 2014. I'm going to email my HR people tomorrow to see if there is a chance that my insurance will take pre-existing conditions. Right now he has nothing.
He had a shower tonight. You might think there isn't much to that, but there is. It's always an ordeal preparing him for a shower. He still has the tube and bag so we have to cover that up with plastic and tape it in order for it to stay dry. It exhaust him to shower so he only does it a few times a week.
He needs a hair cut badly so I've got to figure out how to get that done.
He's in bed and asleep now. Hopefully he will have a better day tomorrow.
I did a lot of crying today over him not eating, the fatigue, and the financial end of things. He is so weak it scares me when he stands up.
It seems like right after he has chemo he has a ton of energy, but it starts dropping during the week. This is his "free" week so no chemo, hence his extreme fatigue (I think). I've called the doctors and I don't think they understand what I'm telling them.
Today I asked him if he would agree to a feeding tube if needed. He said yes at this point he would do it but I would have to change the bag. I told him I have no problem doing that. So I'm going to discuss it with his doctor's nurse tomorrow. They might not do it because of the blood thinners.
I got an email from a Patient Advocate organization today. I had asked them if it was law yet where insurance companies had to except patients with pre-existing conditions. Guess what, its not until January 1st, 2014. I'm going to email my HR people tomorrow to see if there is a chance that my insurance will take pre-existing conditions. Right now he has nothing.
He had a shower tonight. You might think there isn't much to that, but there is. It's always an ordeal preparing him for a shower. He still has the tube and bag so we have to cover that up with plastic and tape it in order for it to stay dry. It exhaust him to shower so he only does it a few times a week.
He needs a hair cut badly so I've got to figure out how to get that done.
He's in bed and asleep now. Hopefully he will have a better day tomorrow.
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