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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by Joan797 on February 16, 2006, at 20:08:09
And it seems that there is no end to the journey. I am emotionally scarred from this terminal illness my Dad has. Emotionally exhausted, physically exhausted.........done with living.
I've gained 20 pounds. I've slit out at least 2 pairs of jeans. I wear sweats or pajamas now all the time. Go nowhere. Don't bathe regularly. Never fix my hair or put on makeup. Sleep when I'm home, the 6 or 7 hours I am home every other night that is. I am a zombie of my former self.
I can't see this ending soon and am mortified of my wishes for it to be so. Euthanasia has gotten a bad rap actually in my book.
Bodily functions are no longer controlled.
Demands are prevalent. Slavery abounds. That's what children are for after all. To do, to obey, to provide....to to to to what???
Dememtia has set in with him, and although it provides some comic relief every now and then, it is also tremendously disturbing to watch, and creates a huge fear in me that it will eventually turn violent.
This is a very depressing post. And for some unknown reason I want someone to read it and feel sorry for me and somehow make me feel better in the process.
Forgive me for my ramblings. I do believe the "crazies" are catching. Oh, wait, I was already crazy. Hmmm. Rotund crazy now.
Joan
Posted by TexasChic on February 16, 2006, at 20:57:23
In reply to It's Been a Long Strange Trip *Trigger*, posted by Joan797 on February 16, 2006, at 20:08:09
You poor thing! You sound completely overwhelmed. I recently lost my Grandmother to end stage renal disease. I was her primary care giver for several years.
Everything you said struck a cord with me, from the dementia being sometimes comical, to the bodily functions no longer under control. I think I have delt with every bodily fluid there is.
You are clearly suffering from caregiver burnout. I went through the same thing and somehow got the idea to go see a therapist. It was the best thing I've ever done. Just to have someone to bounce things off of, to tell you if you're over reacting or have a legitimate complaint, will save your sanity. Plus they can give you advice as to agencies to call and such.
You should be able to get some help caring for your Dad. There are lots of orginizations out there that you probably don't know about.
You need help immediately. Does your Dad have a social worker or nurse who comes by? If not you could go to his doctor. Tell them what you are going through and that you need help. If not this just look in the phone book for a therapist. You don't need to do this alone!
I hope you will write back and let us know how you're doing. I know only too well what you're going through. You've got to get help caring for your Dad. Its too much for one person alone.
-T
Posted by Phillipa on February 16, 2006, at 21:05:00
In reply to Re: It's Been a Long Strange Trip *Trigger* » Joan797, posted by TexasChic on February 16, 2006, at 20:57:23
My oldest Daughter in Florida is a volunteer for Hospice. They will help you. Fondly, Phillipa
Posted by TexasChic on February 16, 2006, at 21:05:32
In reply to It's Been a Long Strange Trip *Trigger*, posted by Joan797 on February 16, 2006, at 20:08:09
> I can't see this ending soon and am mortified of my wishes for it to be so. Euthanasia has gotten a bad rap actually in my book.
This is very normal. If not for yourself, you wish it would end for him.
> Demands are prevalent. Slavery abounds. That's what children are for after all. To do, to obey, to provide....to to to to what???
You are not a slave. You can turn care over to a hospital or whoever else would care for him if you weren't around. There's always an alternative.
> Dememtia has set in with him, and although it provides some comic relief every now and then, it is also tremendously disturbing to watch, and creates a huge fear in me that it will eventually turn violent.
I know how troubling this can be. You end up laughing, then crying. This is very difficult to deal with when you're close to the person.
I hope you get some help soon. It doesn't have to be this way! You CAN get help.
-T
Posted by wanttobhappy on February 16, 2006, at 21:54:47
In reply to It's Been a Long Strange Trip *Trigger*, posted by Joan797 on February 16, 2006, at 20:08:09
I can feel a small amount of the pain you are going through. I have not cared for a loved one who has suffered a degenerative disease, but I have worked in hospice as well as an extended care facility were people go when the hospital can no longer help.
So I have felt the loss of life and the frustration of trying to do whats best for someone who would rather take a swing at you than let you wash them. I do come away with an atachment to these people but they are not my family so I can only understand a small portion of your pain.
I am sure your Dad would'nt want you making yourself sick caring for him, you need to look into all available resources and get some help. You are doing a good job BUT you need time to recoup and if you fall ill you will not be able to care for your father at all so TAKE CARE OF YOURSELF!!
Best of health,
Laura
Posted by Joan797 on February 16, 2006, at 22:00:46
In reply to Re: It's Been a Long Strange Trip *Trigger* » Joan797, posted by TexasChic on February 16, 2006, at 20:57:23
End Stage Renal - That's where we are at.
We chose home health care over hospice. Why, I'm not sure now.
I have two siblings helping me. We share the duties jointly.
I know there are places out there that provide support, I just don't know when I have the time to make the call.
Sometimes it takes two hours per meal, two hours sitting on the pot, two hours taking medicine, and often times all night sitting on the edge of the bed. During these times I am unable to think of anything else but....Dad, are you finished yet?.....Dad, you need to take your medicine.......Dad, are you going to eat???
I really would appreciate any knowledge you can share with me regarding your experience with your grandmother. Please babblemail me if you can. I need to talk to someone who's been there.
Joan
Posted by Sabrina_0805 on February 16, 2006, at 23:23:38
In reply to Re: It's Been a Long Strange Trip *Trigger* » TexasChic, posted by Joan797 on February 16, 2006, at 22:00:46
I'd make that call for you, if I could.
Thinking of you.
Sabrina
Posted by James K on February 16, 2006, at 23:50:15
In reply to It's Been a Long Strange Trip *Trigger*, posted by Joan797 on February 16, 2006, at 20:08:09
this is just a small idea based upon less life experience than you are experiencing right now.
You are going to do what you have to do. And it is going to hurt. and at some point when it is done, if you feel guilt for your feelings, rather than pride for your actions, you will be selling yourself short.
I hated it when my granddad died slow. I didn't maybe live out my responsibilities. when me or my wife has been real ill, we've done what we have to. that's real life. the thing we all claim we can't handle, but do everyday.
I mean this supportive, do what you do, the best you can, don't feel sorry for not achieving some idealistic emotional or physical plane that saints aspire to.
And help is a realistic obtainable goal, then by all means, get it. My grandma worked her butt off, but she had still got help, and she is perhaps the greatest person I've ever known.
James K
Posted by Joan797 on February 17, 2006, at 7:00:08
In reply to Re: It's Been a Long Strange Trip *Trigger* » Joan797, posted by Sabrina_0805 on February 16, 2006, at 23:23:38
1-800-JENNY CRAIG ????????????
Posted by Joan797 on February 17, 2006, at 7:10:37
In reply to Re: It's Been a Long Strange Trip *Trigger* » Joan797, posted by James K on February 16, 2006, at 23:50:15
Very insightful and yet a little too brutally honest.
I know what you are saying, and I know it isn't meant to hurt. I get it, I really do.
Then why is the phrase "stop whining and get the job done" keep ringing in my ear??
That is my sub-concious talking, not you. Telling me to just shut up, do what I have to do, and sooner than later, it will all be over, and I will move on to a bigger and better crisis.
Notice how some women hear every word you say, and somehow always manage to twist it up inside and turn it into something sinister.
I have a talent. I have a great talent.
Whine.
Dine.
Wine.
Bitch.
Moan.
Receive Support.
Manage to make the support a bad thing in my mind.
by the way. I like that sainthood thing you said about doing good, and feeling good about it.Joan.
Much lighter mood, but on a no sleep giddy high.
Posted by TexasChic on February 17, 2006, at 19:57:46
In reply to Re: It's Been a Long Strange Trip *Trigger* » TexasChic, posted by Joan797 on February 16, 2006, at 22:00:46
Sorry I didn't respond until now. I have to get up at 4am for work, so I was barely awake when I was typing that post to you. But it struck a cord with me and I had to respond.
I will babblemail you if you like, or you can babblemail me. But in my opinion the #1 thing you need to do is see a therapist who will be able to advise you.
I know it seems impossible to find the time, but this should be your main priority. You will be no good to your father if you go on like you have been. I don't know how to put it into words, but I've been there, and I know this. If you want to be able to care for him, you HAVE to take care of yourself. I know it seems selfish when he needs you every minute of the day, but you've got to look at the big picture. If you have a breakdown or something, then you won't be able to help him at all! So even though it seems selfish, your number one priority should be YOU right now. Its the only way you'll be any good to him.
I was a zombie when I first went to therapy. This was during a period when Grandmother was in excruciating pain from a fall. The doctors said she had broken a small bone in her back, and there was nothing they could do except give her pain medicine while it healed on its own.
During this time, I had to sleep on the couch so I could wake up every 4-6 hours (in spite of work the next day) to give her pain medicine. I would wake up when I heard her moaning. I had my Mom and Aunt staying with her on alternating days while I was at work. Then I would rush home and become full time caregiver again. I didn't even know about home healthcare at that point. I was simply functioning day to day, hour to hour, minute to minute. There was simply no room to think about anything else.
The pain medicine eventually caused a bowel blockage, which I didn't know about at first. All I knew was she kept throwing up everything but still was in too much pain not to take the pills. I tried everything I could think of. I talked to the nurses at dialysis on numerous occasions. No one was being helpful at all. I honestly can't remember exactly what happened, I think I finally spoke to one of her doctors who realized how serious the situation was. She had surgery and I had to put her in a nursing home so she could recover. I cried all the way home from that place. Even though I knew it was temporary, I felt like I had dumped her in an old folk's home.
I know what the guilt feels like. When you have too much to bare, its natural to wish for it to end. But you can get help. I know it doesn't sound like just talking to someone will do any good. But my T gave me all sorts of great advice, as well as counseling me on my frame of mind. Its their job to know these things, or at least know how to find out.
I know this is a sad time but YOU DON'T HAVE TO BE MISERABLE! You CAN ease the burden on yourself. Even though I've been there I'm still no professional. If ever there was a time for one, believe me, its now.
Feel free to babblemail me if you need to talk or just let off steam. I try to check my email everyday, but sometimes life keeps me from being entirely consistant on that. I will be watching for your post or babblemail though. Take care.
-T
This is the end of the thread.
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