No one tells you about that part..
You get very angry at them for dying.. no one tells you about that part..
Why don't they talk about it?
I have discovered that people don't talk about what you go through as the caregiver to an adult. Why is that? Wouldn't it make life a lot easier for those of us that have to be the caregiver, if people that have gone through it.. talk to us?
I've discovered this is a horrid position to be in. The anger.. the guilt.. the frustration... it just builds and builds until you think you will explode.
I feel most guilty on the days Ron is really struggling. The days that I have to keep people away so they don't see him that way. The days I tell the family he's sleeping when they call.. The days I just unplug the phones so they don't know. The days I take the full force of this illness... The days I pray that the higher powers just take him and end this suffering for him...and then...the next day or the day after that.. when he pulls out of it..and I get him back.. I feel really guilty because I prayed for the suffering to end.. and now I have him back... and I get to enjoy a few more hours.. or a few more days.. and our children have him.. for a while longer...
No one talks about that..
or how about the anger you feel when you want to just go to town shopping,, and you can't.. unless you have a babysitter... or the anger you feel when you know what he is doing or saying has nothing to do with the man you fell in love with... but it stings just the same....
No one talks about that.....
or how about the frustration you feel at knowing he's in there.. if you can just make him concentrate long enough to pull him out of there... The frustration at the endless talking to himself in his sleep.. and sometimes when he's awake....
The frustration of the drugs that keep him alive and comfy... that screw with his mind...
The frustration of knowing he should eat healthier.. and gain weight... and walk to build muscle.. but knowing that he has that R blood in him that is just gonna make him fight you every step of the way...
The anger.. that this was not suppose to happen to us.. We were the great love affair.... We were not suppose to end this way...
No one talks about that...
I'm talking about it....
It's ok... it's real... it life.... and it happens...
You will pray for the higher powers to take them and take away their pain....
You will feel bad when they come back to you. and you have prayed for an ending to it....
You will feel anger.... at them.. at the higher powers... at the doctors... at the world...
and You will be in a constant state of frustration....
So.. talk about it... learn from others... ask questions... do your research... and most of all...
DEMAND THE RIGHT TO TAKE CARE OF YOURSELF..
Demand that you are moved where you can get help.. where you can walk away for a few hours..where there is someone else to take on some of the heat...
Make the family take responsibility for their actions.. his actions..and the doctors actions..
Demand the right to do what is right for him....
Demand life be made easier for you ..and your loved one...
Demand the right to take your lives back.......
and Demand.... time for yourself.....
I've discovered this is a horrid position to be in. The anger.. the guilt.. the frustration... it just builds and builds until you think you will explode.
I feel most guilty on the days Ron is really struggling. The days that I have to keep people away so they don't see him that way. The days I tell the family he's sleeping when they call.. The days I just unplug the phones so they don't know. The days I take the full force of this illness... The days I pray that the higher powers just take him and end this suffering for him...and then...the next day or the day after that.. when he pulls out of it..and I get him back.. I feel really guilty because I prayed for the suffering to end.. and now I have him back... and I get to enjoy a few more hours.. or a few more days.. and our children have him.. for a while longer...
No one talks about that..
or how about the anger you feel when you want to just go to town shopping,, and you can't.. unless you have a babysitter... or the anger you feel when you know what he is doing or saying has nothing to do with the man you fell in love with... but it stings just the same....
No one talks about that.....
or how about the frustration you feel at knowing he's in there.. if you can just make him concentrate long enough to pull him out of there... The frustration at the endless talking to himself in his sleep.. and sometimes when he's awake....
The frustration of the drugs that keep him alive and comfy... that screw with his mind...
The frustration of knowing he should eat healthier.. and gain weight... and walk to build muscle.. but knowing that he has that R blood in him that is just gonna make him fight you every step of the way...
The anger.. that this was not suppose to happen to us.. We were the great love affair.... We were not suppose to end this way...
No one talks about that...
I'm talking about it....
It's ok... it's real... it life.... and it happens...
You will pray for the higher powers to take them and take away their pain....
You will feel bad when they come back to you. and you have prayed for an ending to it....
You will feel anger.... at them.. at the higher powers... at the doctors... at the world...
and You will be in a constant state of frustration....
So.. talk about it... learn from others... ask questions... do your research... and most of all...
DEMAND THE RIGHT TO TAKE CARE OF YOURSELF..
Demand that you are moved where you can get help.. where you can walk away for a few hours..where there is someone else to take on some of the heat...
Make the family take responsibility for their actions.. his actions..and the doctors actions..
Demand the right to do what is right for him....
Demand life be made easier for you ..and your loved one...
Demand the right to take your lives back.......
and Demand.... time for yourself.....
Things doctors don't tell you..
THESE ARE TIPS THAT OTHER CARE GIVERS HAVE PASSED ON... they are just things that worked in their case.. this is not medical advice..
1. for bedsores.
Do not use egg crate mattress pads unless you use sheep skin between them and the patient..egg crate mattress pads retain the heat..
buy... BUTT PASTE.. it's a diaper rash medicine and it will clear a bed sore up ASAP..
1. for bedsores.
Do not use egg crate mattress pads unless you use sheep skin between them and the patient..egg crate mattress pads retain the heat..
buy... BUTT PASTE.. it's a diaper rash medicine and it will clear a bed sore up ASAP..
The Hell you say?
One thing that I've learned is to let it go in one ear and out the other. I nod my head and smile alot. I've learn to paste that "Isn't it about time you take your medication" smile on my face.
There are times they appear to be in total control of their senses,,and then.. they want to cut holes in their clothes because that's what the doctor told them to do...(actually the doctor told me to cut a hole in the sheepskin to keep pressure off the bedsore on his hip).. when I wouldn't let him cut holes in his clothes.. he decided in no uncertain terms that the sheepskin made him hot..
So, yesterdays 2 hour drive and then 2 hour search for sheep skin... was a wasted day.. again.. the smile.. and the "Hey honey,.. how about you eat this pretty green candy"...
There are times they appear to be in total control of their senses,,and then.. they want to cut holes in their clothes because that's what the doctor told them to do...(actually the doctor told me to cut a hole in the sheepskin to keep pressure off the bedsore on his hip).. when I wouldn't let him cut holes in his clothes.. he decided in no uncertain terms that the sheepskin made him hot..
So, yesterdays 2 hour drive and then 2 hour search for sheep skin... was a wasted day.. again.. the smile.. and the "Hey honey,.. how about you eat this pretty green candy"...
