Dear Son had been sleeping longer than normal. Typically, he’ll wake up early and once I get his food started via the g tube, he often goes back to sleep. This morning was no different however he had been sleeping for some time now. As a mother, you cherish these few moments to get things done, whether it’s around the house or just taking some time on the internet but this had gone on for a while. Lunchtime came and went, but he still was sleeping. I let him sleep knowing that sometimes, he needs this extra sleep to grow. Other times, too much sleep means he’s having more seizures.
I kept checking on him and finally, around 1:30 or so, I decided to get his lunch time medicine ready and his feeding. His lunch time med is typically given around noon but I have a window of around an hour or so. Since he had been sleeping so much, I opted to give his feeding via the syringes, doing it all at once versus going through the feeding pump, which would have taken an additional three hours. After giving his feeding, I proceeded to dress him for the day. I needed to get a few things from the store, and taking him with, would take all of my energy. Our one hour pleasure walk would be forfeited today, since I would have to lift him in/out of the car four times, for a ten minute shopping trip at the grocery store. That little trip and all of the lifting of his 170 pound six foot frame, would take all of my strength for the day. Normally, I’ll use a respite worker when I have to go to the grocery store, or try to do it while he is at school. Today, being Sunday, I decide to take him along. As I dressed him, his fingers and hands began to shake. It wasn’t uncommon for this to happen and I felt it was typically seizure activity however the most recent EEG showed this was not the case. Regardless, I use the magnet on his wrist to activate his Vagus Nerve Stimulator (VNS) and proceeded to dress him.
Once he was dressed, I used the hoyer lift and got him out of bed and into the wheelchair. Although I use the hoyer lift, there is still a fair amount of lifting involved on my part. The hoyer lift gets you 80% there and the other 20% is you. Once he’s in the wheelchair, I have to lift him up to straighten him out and get his hips into the rear of the wheelchair so he can sit properly. When his tone is off, like today, this is a bigger job. When he’s having a good day, you can get him in the wheelchair with little or not lifting on your part; this is similar to the diagram in the manual. The worse he is, the harder it is to position him in the chair without additional lifting. I am sweating pretty good by now and his hands continue to shake but not more so than before. I use the VNS again, hoping it will kick in. I listen for the vibration in his voice, to confirm the VNS has been activated. I hear nothing.
I pull the wheelchair up to the table and begin to brush his teeth. He’s getting restless now, and begins to cry out. This is not normal for Dear Son, he is normally happy to be sitting up. As I lather on the shaving cream and start to shave him, he begins to yell out more and seems in more distress. I soon realize that I have a full blown seizure on my hands. The seizure gets worse and time is getting limited. He can no longer sit upright and I can tell by the way the seizure is escalating that I won’t have time to get the hoyer lift over to him to remove him from the wheelchair. I’ll have to lift him out of there myself. He’s really yelling out now like he’s in severe pain and he’s shaking quite rapidly. I remove the footrests and tilt the chair forward. I am going to have to lay him on the carpet immediately or he’s going to fall out of the chair. I lift him onto the ground and then slowly let his head down so he doesn’t get hurt. I race to get the Diastat, a rectal valium of sorts, to stop the seizure. I am dripping in sweat now, worried it won’t be enough. I tear open the diaper, administering the Diastat as quickly as I can. Sweat pours out of my head so fast, I can hardly see.
With each passing seizure, I find the adrenalin seems to be pumping faster and faster, at least with the big ones. At some point, as Dear Son deteriorates, you know there will be an end and with each hospitalization and with each milestone loss, every event takes you a step closer to the final day. You begin to wonder as each one happens, if this is “the” one. Because of that, the adrenalin pumps faster and the sweat just pours out of my forehead, like a cartoon charactature drawing in the comics section of the newspaper.
The Diastat is also getting harder to administer. No longer am I giving it to a child, but a nearly full grown man. It’s hard to roll him over and just plain harder to administer. He yells out some more and I begin to wonder if it will be enough. Once it’s administered, it’s just a waiting game to see if it will work. I am sweating even more now, if that were an option. I look at my watch. This seizure has been going on for over twenty minutes now. I wonder if I am going to have to call 911. All I need is for the Diastat to kick in and the seizure should start to recede a bit. The problem is that it’s just not as fast as it used to be. In the beginning, when I started using it almost ten years ago, the Diastat would stop the seizures on a dime. Now, it stops them typically within ten minutes or so. I only administer it if I have a seizure that getting bigger or advancing, as I call it. Fifteen minutes later, the seizure begins to come down a bit and I know the 911 call will not have to be made. Dear Son has beat the seizure. He lies on the carpet, as I rub his back. His eyes are rolling back and his eye lids are having a hard time staying open. I talk softly to him as I rub his back, propping his head on a pillow. I know he will need to stay here until he comes out of this. It’s not long before he’s fast asleep. He’ll need to stay here for a while until he wakes up since it would be too hard to move him like this.
As time goes by, I find myself holding on tighter. The thought of Dear Son not being around is scary. I had a dream the other night that someone was trying to take Dear Son away. I went searching frantically for him and when I found the man, I told him he could take anything he wanted from me, but he could not take my son. I took Dear Son back from the man and woke up in a cold sweat. The clock read 3 a.m. I was so shaken by the dream that I couldn’t go back to bed right away. The next day I told Dear Son about my dream. We have a little catch phrase that I use with him. It is, “where you go, I go” meaning that whenever he has to go into the hospital or do anything, that I will always be there with him. I told him that after I told him about my dream and he smiled. He knows I love him and I love taking care of him. I tell him all the time that there is nothing I love more than taking care of him. He has become my purpose in life. While it’s true, you have to build a life for yourself, the reality is that when you care for a person with this many needs, you don’t have time to do that. They are your life.
This week, I received an e-mail and a letter regarding the cuts by the Department of Human Services in our state. They fund the respite program that we use, along with many other services for people with disabilities in our state. Without these funds, disabled people can not get the care that they need, whether it’s in a group type home or whether it’s receiving respite care in their own home. Our respite funding was cut by $200 which is 20 hours of respite care that we will not be able to use over the next year (typically I receive on average 10 hours of respite care a month, enough to run a few errands). I worried not for myself or for Dear Son, but for those children and adults in homes where the staff was already overburdened (you may recall an earlier post where one of the residential programs has one aide for every 7-10 pediatric fully disabled residents) and there would be additional staff cuts. I realized that in the end, that the only time you are guaranteed good care is when someone loves you. When someone loves you and is able to care for you, your needs will be met. I feel honored that I get to be that person for Dear Son. But I also know that some people don’t have anyone to care for them other than the state. And for those people, they need the funds to employ the people who will care for them. Caring for the disabled is not optional, it’s mandatory. It’s funny, we require driver’s in our state to carry auto insurance, in case they are in an accident but caring for the disabled people in our state is optional. There is a saying that goes like this, “how you spend your money, says a lot about you.” I wonder what these funding cuts say about us. But more importantly, I worry about developmentally disabled children and adults and if they will be hungry longer since there are fewer people to help feed them or get them their food on time, or their diaper changed quickly or that someone can attend to their seizure fast enough. Who is there to help them after the pink slips are administered? We need the Department of Human Services to restore those funding cuts.
Note: The Department of Human Services announced budget cuts last week that will have a substantial impact on services provided by many organizations that serve the developmentally disabled. Our state is retroactively reducing the amounts they will pay some programs by 2-12% Another agency in our area has funding cuts in excess of $500k this year alone. This will result in staff layoffs, reductions in wages and fewer patients being served.
I kept checking on him and finally, around 1:30 or so, I decided to get his lunch time medicine ready and his feeding. His lunch time med is typically given around noon but I have a window of around an hour or so. Since he had been sleeping so much, I opted to give his feeding via the syringes, doing it all at once versus going through the feeding pump, which would have taken an additional three hours. After giving his feeding, I proceeded to dress him for the day. I needed to get a few things from the store, and taking him with, would take all of my energy. Our one hour pleasure walk would be forfeited today, since I would have to lift him in/out of the car four times, for a ten minute shopping trip at the grocery store. That little trip and all of the lifting of his 170 pound six foot frame, would take all of my strength for the day. Normally, I’ll use a respite worker when I have to go to the grocery store, or try to do it while he is at school. Today, being Sunday, I decide to take him along. As I dressed him, his fingers and hands began to shake. It wasn’t uncommon for this to happen and I felt it was typically seizure activity however the most recent EEG showed this was not the case. Regardless, I use the magnet on his wrist to activate his Vagus Nerve Stimulator (VNS) and proceeded to dress him.
Once he was dressed, I used the hoyer lift and got him out of bed and into the wheelchair. Although I use the hoyer lift, there is still a fair amount of lifting involved on my part. The hoyer lift gets you 80% there and the other 20% is you. Once he’s in the wheelchair, I have to lift him up to straighten him out and get his hips into the rear of the wheelchair so he can sit properly. When his tone is off, like today, this is a bigger job. When he’s having a good day, you can get him in the wheelchair with little or not lifting on your part; this is similar to the diagram in the manual. The worse he is, the harder it is to position him in the chair without additional lifting. I am sweating pretty good by now and his hands continue to shake but not more so than before. I use the VNS again, hoping it will kick in. I listen for the vibration in his voice, to confirm the VNS has been activated. I hear nothing.
I pull the wheelchair up to the table and begin to brush his teeth. He’s getting restless now, and begins to cry out. This is not normal for Dear Son, he is normally happy to be sitting up. As I lather on the shaving cream and start to shave him, he begins to yell out more and seems in more distress. I soon realize that I have a full blown seizure on my hands. The seizure gets worse and time is getting limited. He can no longer sit upright and I can tell by the way the seizure is escalating that I won’t have time to get the hoyer lift over to him to remove him from the wheelchair. I’ll have to lift him out of there myself. He’s really yelling out now like he’s in severe pain and he’s shaking quite rapidly. I remove the footrests and tilt the chair forward. I am going to have to lay him on the carpet immediately or he’s going to fall out of the chair. I lift him onto the ground and then slowly let his head down so he doesn’t get hurt. I race to get the Diastat, a rectal valium of sorts, to stop the seizure. I am dripping in sweat now, worried it won’t be enough. I tear open the diaper, administering the Diastat as quickly as I can. Sweat pours out of my head so fast, I can hardly see.
With each passing seizure, I find the adrenalin seems to be pumping faster and faster, at least with the big ones. At some point, as Dear Son deteriorates, you know there will be an end and with each hospitalization and with each milestone loss, every event takes you a step closer to the final day. You begin to wonder as each one happens, if this is “the” one. Because of that, the adrenalin pumps faster and the sweat just pours out of my forehead, like a cartoon charactature drawing in the comics section of the newspaper.
The Diastat is also getting harder to administer. No longer am I giving it to a child, but a nearly full grown man. It’s hard to roll him over and just plain harder to administer. He yells out some more and I begin to wonder if it will be enough. Once it’s administered, it’s just a waiting game to see if it will work. I am sweating even more now, if that were an option. I look at my watch. This seizure has been going on for over twenty minutes now. I wonder if I am going to have to call 911. All I need is for the Diastat to kick in and the seizure should start to recede a bit. The problem is that it’s just not as fast as it used to be. In the beginning, when I started using it almost ten years ago, the Diastat would stop the seizures on a dime. Now, it stops them typically within ten minutes or so. I only administer it if I have a seizure that getting bigger or advancing, as I call it. Fifteen minutes later, the seizure begins to come down a bit and I know the 911 call will not have to be made. Dear Son has beat the seizure. He lies on the carpet, as I rub his back. His eyes are rolling back and his eye lids are having a hard time staying open. I talk softly to him as I rub his back, propping his head on a pillow. I know he will need to stay here until he comes out of this. It’s not long before he’s fast asleep. He’ll need to stay here for a while until he wakes up since it would be too hard to move him like this.
As time goes by, I find myself holding on tighter. The thought of Dear Son not being around is scary. I had a dream the other night that someone was trying to take Dear Son away. I went searching frantically for him and when I found the man, I told him he could take anything he wanted from me, but he could not take my son. I took Dear Son back from the man and woke up in a cold sweat. The clock read 3 a.m. I was so shaken by the dream that I couldn’t go back to bed right away. The next day I told Dear Son about my dream. We have a little catch phrase that I use with him. It is, “where you go, I go” meaning that whenever he has to go into the hospital or do anything, that I will always be there with him. I told him that after I told him about my dream and he smiled. He knows I love him and I love taking care of him. I tell him all the time that there is nothing I love more than taking care of him. He has become my purpose in life. While it’s true, you have to build a life for yourself, the reality is that when you care for a person with this many needs, you don’t have time to do that. They are your life.
This week, I received an e-mail and a letter regarding the cuts by the Department of Human Services in our state. They fund the respite program that we use, along with many other services for people with disabilities in our state. Without these funds, disabled people can not get the care that they need, whether it’s in a group type home or whether it’s receiving respite care in their own home. Our respite funding was cut by $200 which is 20 hours of respite care that we will not be able to use over the next year (typically I receive on average 10 hours of respite care a month, enough to run a few errands). I worried not for myself or for Dear Son, but for those children and adults in homes where the staff was already overburdened (you may recall an earlier post where one of the residential programs has one aide for every 7-10 pediatric fully disabled residents) and there would be additional staff cuts. I realized that in the end, that the only time you are guaranteed good care is when someone loves you. When someone loves you and is able to care for you, your needs will be met. I feel honored that I get to be that person for Dear Son. But I also know that some people don’t have anyone to care for them other than the state. And for those people, they need the funds to employ the people who will care for them. Caring for the disabled is not optional, it’s mandatory. It’s funny, we require driver’s in our state to carry auto insurance, in case they are in an accident but caring for the disabled people in our state is optional. There is a saying that goes like this, “how you spend your money, says a lot about you.” I wonder what these funding cuts say about us. But more importantly, I worry about developmentally disabled children and adults and if they will be hungry longer since there are fewer people to help feed them or get them their food on time, or their diaper changed quickly or that someone can attend to their seizure fast enough. Who is there to help them after the pink slips are administered? We need the Department of Human Services to restore those funding cuts.
Note: The Department of Human Services announced budget cuts last week that will have a substantial impact on services provided by many organizations that serve the developmentally disabled. Our state is retroactively reducing the amounts they will pay some programs by 2-12% Another agency in our area has funding cuts in excess of $500k this year alone. This will result in staff layoffs, reductions in wages and fewer patients being served.
13 comments:
Dream mom, that sounds scary having to deal the major seizure by yourself.
10 hours a month of respite care seems hardly enough for someone who has had surgery and when Dear Son is getting bigger and more difficult to move around.
I always think that the bigwigs who make these budget cuts should try living your life for a month and see how they feel.
Big hugs for you - you are a great mom.
Poppy and Julie Q
Oh Dream Mom - it sounds so reasonable when the terms "fiscal responsibility" and "economic rationalism" are used to mask the real deal - and this really is.
Lots of hugs to you.
As always your blog opens my eyes to the daily realities of caring for a severely disabled person and every time I'm awestruck at how devoted you are and how you seem to take things in your stride.
I'm a long time loyal reader and rarely comment. But thank you for your thoughful posts that uncover those parts of life that are hidden to those of us who don't have the responsibilities you do.
Warm wishes to you and Dear Son.
Lori x
So much for the governor's facade that he cares for the people. Hopefully he loses the next election, it is hard to believe he made it in for the second term. Maybe his replacement will do a better job than him and the crook he replaced.
I hope that Dear Son feels better soon!
Karen
your blog has taught me so much about disability and how it affects everyone's lives, not just the disabled person. it's sad that, once again, the almighty budget makes lives more and more difficult.
i will always be rooting for you and your son! you are a very impressive team.
if you dont mind me asking, what dose diastat are you using? DS is a man now, and will certainly need a higher dose due to his age, size, and long term use of benzos.
Dream Mom
I can only imagine how tough it must be for you to take care of your Dear Child. I can only pray that his condition improves. Good luck!
Dream Mom,
I'm still out here keeping an eye on Dear Son and praying for strength for you.
Hugs,
Sammy's mommy
Ten hours respite care a month is pathetic. I also have a grown, severely disabled son, and we get up to 12hours a week in our state. That's when I do my grocery shopping, run errands, make doctor/dentist appts. and occasionally meet friends.
I hope your state gov. can find it in their hearts to turn that budget around. A main point of respite care is to prevent the family from being forced to put their loved one in an institution due to lack of help with caregiving. Families and certainly one person like yourself can only do so much!
Here's hoping that Dear Son is feeling much better.
Anon 1031-Dear Son is on the maximum dose of 20 mg for Diastat. They have adjusted his dose accordingly as he grew.
Thanks everyone.
Dream mom,
There is a special place in heaven for you and dear son. What you do on a daily basis is truly heroic. I hope your services do not decrease.
You and dear son are truly amazing people. God bless.
Michelle
Mama,
Off subject, but I wanted to tell you that I think of you often when I get in a ...bad place....in my battle with depression.
You have been an encouragement to me, and for whatever reason I felt led today to tell you that.
Surgeon in my Dreams-I am sorry you are having such a rough time right now. I pray that things will get better for you. Thanks for writing.
I must say that I don't understand why there is such a huge disparity between states. Does your son not get any after-school PCA hours so you can run errands? I PCA for a little girl with similar issues to DS - more frequent seizures, though a non-progressive condition, but similar intellectual functioning to him - and her parents get about 20-25 hours a week of PCA care plus a night nurse up to 5 nights a week so the parents can sleep and not have to administer meds/gtube/diastat. I am sorry that you are going through this hard time. I wish you some peace and a good night's sleep.
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