Family and Caregiver Schizophrenia Discussion Forum

A question for the caregivers


#1

With all the DSHS paperwork, and the hospital visits, and trying to get from one doctor to another, and the other medical stuff that comes up, no to mention just the basic maintenance that we seem to need…

What is it like? A day in the life of a caregiver? How do you keep going?

I for one am grateful of all you do for others. I wouldn’t be alive if it wasn’t for my support team.
But it’s not so much the why as how. (love and hope I’m guessing)
How do you manage to do it?


#2

I would say it’s love and hope. My days are relatively easy since I’m not working at the moment. Keeping myself calm seems to be the biggest thing. Worrying becomes second nature so that can be a little stressful. Hoping for the best yet always trying to be on guard for the worst.

Day to day:

Trying to find a balance between taking care of him yet wanting him to do things for himself. I usually end up doing most of it because if I don’t his room looks like a tornado dumped in it.

Nicely asking him to do things, repeatedly, because if I demand than his defiance kicks in.

Nicely reminding him that he can make a coffee etc on his own although he is getting better at this.

Helping him with laundry. I fold and he is ‘supposed to’ put away himself.

Feeling like a maid on occasion as after I clean up he makes a mess…

Patience. That’s a big one.

Listening is also big. Trying to respond with “I think” statements so that he has a different view point but he thinks he knows everything so I’m not to sure how much good it does :wink:

I think the hardest is probably constantly being on guard. Trying not to get paranoid myself when I see signs that he is not taking his medications and that his anxiety is back. His anxiety goes up when not on meds right and when he is going through small withdrawal symptoms except he doesn’t really see or want to see the connection.

Worrying about the future. Right now he has me but one day I won’t be here so he will need a partner that can be loving and stern.

At the end of the day. Happy that he is still here. Hopeful for the future. Stay calm, be positive and say I love you :smile:


#3

The on-guard, “waiting for the other shoe to drop” is indeed one of the hardest parts.

Trying so hard to make good decisions while taking my son’s wishes into account, and then trying so hard to not second-guess my decisions, or beat myself up if things don’t go well.

Trying to avoid the “what if” and “if only” thoughts.

Being so grateful for those times when my son slings his arm over my shoulder and smiles.

Trying to keep from resenting my friends’ “perfect” kids who are graduating from college, getting married, starting careers.

Wondering if I can make it through one more delusional conversation with him without just saying, “Are you kidding me?!?! That’s crazy talk!”

So sad, so, so sad that my son’s life has been intruded on by this dreadful and baffling disease, and so frustrated that he can’t seem to see that I and the doctor, and the social worker, and everybody else are trying, so hard, to help him pick up and continue on with a satisfying life.

Occasionally, stepping back to see that I am still standing, my son is incrementally improving, I still have my job, my marriage, and usually, my sense of humor.


#4

I am glad to hear from other caregivers, family members. I don’t know day to day how things will be, but I know I can’t give up on my significant other because his family wants no involvement. I love him dearly and had to come to terms that he is not lazy, it is the illness that often keeps him in a down trodded mood. The medications don’t help either. I find that I can’t take anything personally. Don’t get me wrong I get tired to doing everything, cleaning up his messes after I have just cleaned. Sometimes, most often times its a task to get him off the couch but I am not walking in his shoes. I just try to find time for myself while he is sleeping by playing games on the internet, my music or even reading. I log in on this site everyday and it helps me to better understand the behavior patterns and the illness alotogethe


#5

Oh this is a down to earth, realistic post and momma if I’ve ever heard one! It’s obvious you love you son very very much. I send a hug out to you lady.


#6

Kudos to you for having the compassion and empathy to ask this of a caregiver. I’ve spent 38 years waiting for my father (diagnosed sz) to recognize how I’ve been there for him. Hasn’t happened yet.


#7

I love my son and try to support him in all things, good, bad, or even when it’s just another day. It’s a daily ritual of watching and feeling where he is, without being intrusive. Reinforcing the positive, hoping it gets easier. Trying to get him to talk to me, without him feeling I am “getting into his business.” Just being there for him. Learning to stop holding my breath and stop waiting for the other shoe to drop. To live in the moment. Learning to keep my own stress down, and learning to take time for me, and for my partner too. I am a reader of this site, not a big contributor, but just the reading has actually carried me through many a tough time. Thankful for everyone on here sharing. Patience, understanding, love and hope drive every day.