Caregivers are warriors

Family
1

I think my whole life has prepared me for the role of caregiver. I never put a title to it, but life in retirement, life in the senior years, life in the “off ramp” is primarily concerned with the the care of others.

And thank heaven, because we need a purpose in life at any age and especially as seniors when our work building a family and/or a career has been completed. Now as seniors, we can devote ourselves a little or a lot to the welfare of those around us.

Those around us may be friends of many years or family members who only need us at times of illness or accidents. Seniors like me who have been blessed with long life and much good fortune can reach out to call on shut-in friends. I can reply when medical care requires the support of a family member if a serious illness like schizophrenia rears its ugly head.

Family members who suffer a serious mental illness will not likely be part of holiday celebrations outside their comfort zone or be comfortable inviting family members in to share the season.

The symptoms of schizophrenia make it difficult for patients to interact with others, so they withdraw from everyday activities and the outside world.

I have seen my daughter frightened, anxious, confused, disorganized and scared. Consequently, the people around her are scared, too. I know from experience parents are often the most scared of all.

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2

You’re right. Caregiving of any kind can be an arduous and thankless job. People who do it are the type of people who hold the world together while wreckless libertines create havoc. It seems like the more caregivers are willing to do, the more responsibility is placed on them.

3

i can’t think more highly of carers, than i do.
they are the forgotten, though these days people seemingly know they exist !!!
they save goverments an immeasurable amount of money.
they give the one thing that can not be manufactured by a goverment department, mental hosplital…love.
take care from :alien: and his apprentice darth bunny :rabbit:

4

Hmm. I don’t mean to add problems to the mind of our wonderful care givers… But we the sz are defiantly much more scared. We suffer from perpetual unending terror. And caregivers can take a step back and breath when they have to. However we are subject to terror and mental anguish that we don’t get a vacation from and we can’t just take a step back.

That being said, there’s no reason for caregivers and family to be scared for us. That’s rediculous. We are scared enough for the both of us. Ha.

But on a more serious note there’s no reason for caregivers to be scared for us. There’s nothing you can do about it so there’s no sense in worrying. However we will continue to be paranoid for the rest of our lives.

Oh well. Sad day.

It can’t be helped.

5

Just put us out with the trash. We’ve really got nothing to lose anyway and our imaginary friends keep us company.

(It beats doing hard work anyway. Ha)

6

You might as well talk to a brick wall as to tell those of us who are caregivers not to worry or be scared, lol! It is just part of loving our family members.

7

I am the warrior type naturally ( must be the Viking ancestors) but interestingly for me, when my son was diagnosed I found it appropriate to drop all warrior tendencies and instead foster as much cooperation as possible among all those around him. I saw a study reported somewhere recently (maybe here) that said that all biographical accounts by parents of children with disabilities use the ‘parent warrior’ metaphor. It’s understandable but it places the parent at the centre of the ‘struggle’. As someone who had childhood onset diabetes and spent rather a lot of time listening to my mother tell me what a pain it was for HER (justify your existence, child), and now the mother of a son with a psychotic disorder, I am reluctant to engage with the ‘parent hero’ model. Let’s say that I think it puts the focus in the wrong place. My suffering because of sz is vicarious (except when I am out of my mind with fear that he might kill himself or otherwise die - I might lose him, in other words). My son’s suffering is direct (though I admit to crying in empathy). I am not a “carer” as such. My son lives relatively independently (with some financial and practical help from thr family) and the agreed aim is to develop his independence and capacity, not to “fight” anything or anyone. Even his illness, we don’t talk about fighting it. We talk about “managing” it, “dealing with it”. I treat my diabetes as a “condition”, not an illness, and I think that way it has become an experience more than an affliction. It is early days for my son, but I hope he can learn to manage well too.

8

What about us? Don’t you lose us, then? What about you? Don’t we lose you? Our children and relatives are not disposable or replaceable, you know. I know you’re joking, but that ‘trash’ line acknowledges that sz really crushes people’s self-esteem. Don’t buy that. You dont need to be some materially successful hotshot to be loveable.

Also, I am perturbed. You re terrified ALL the time? My son doesnt seem to be but I must ask him.

9

Very good points. Fighting just isn’t the right metaphor - it implies struggle, which we want to minimize in our lives. Over time, I think I am shifting to the same thought processes - I want to help my son have as much independence as possible, not spend my time fighting for him. Sometimes fighting is appropriate - when being an advocate in a difficult situation.

10

Yes, but the whole mindset can set up pretty horrid ripples for someone with paranoia. I think it’s important to learn assertiveness and negotiation skills (and demonstrate them). When my son had his first psychosis he developed a great fear of someone in our environment and became convinced the guy was a gangster who was going to murder him (my son). We actually had some business with this guy and owed him money. I could not disabuse my son of his delusion, but he sat in the corner of the room and watched me negotiate with the guy and a couple of days later said, “No, he’s not a gangster at all.” If I had been “fighting” for my son’s rights, I could have kicked off a big argument and made it impossible for him to see through his delusion.

11

Hmmm… I almost blushed at this honestly. But I’m afraid these words are of no consolation. As much as I want to be a materialistic success with a nice house and cars and a super model wife and no financial problems, I’m not afraid to admit that this dream is quite unrealistic.

However, that’s not the problem that this is unattainable. The problem is that I haven’t been loved for the last decade and the damage is already done.

The other part of the problem is, and the main part of the problem, that I don’t even have a “good” life. So I’m afraid you’re just offering me empty promises and trying to sell me dreams.

Good intentions accepted.

For the last 10 years I have been terrified all the time. If you read the posts in the dxed section… Despite the positive words and messages of hope, you will notice that most of the posts are touched with an unmistakable air of fear, paranoia and a feeling of subjection and general uneasyness. If you look closely.

Nice talking to you hatty, you’re intelligence is refreshing.

But c’est la vie.

12

I wasn’t offering you anything. I can’t. I was just expressing concern at your experience. I must say that my son also expressed those feelings for about ten years before diagnosis, though not constantly. And since diagnosis our relationship has improved dramatically, and he is rebuilding his relationships with my sister and family. He had a course of CBT, and he takes APs, and has support from a mental health team. He still has ideas of reference and is fairly isolated but hopefully he’ll get better. What about you? Have you tried CBT? A lot if people find it helps with the fear and dread, etc

13

Oh Christ,

You know exactly what I’m talking about then.

I’m not so forgiving.

As soon as God gives me the means to do so I’m going to throw my mom and dad in the garbage and never talk to them again. I’ve already shredded all of the pictures I have of us all.

I’m sorry but not knowing about a DX is no excuse.

Because we have told you people plainly, and you didn’t listen when we told you. You all just had to keep pushing your own personal agendas.

Well it has broken my heart beyond repair. I can’t put it any clearer than that and I’m not going to repeat it.

I’m disowning my whole family especially my mom and dad.

I will not see them ever again once I’m out of here.

No I’m not bitter and I still have a heart and I will make my own life. I’ve hid my candle down so the wind couldn’t blow it out. My candle still burns.

However I will never share that light with my mom or dad ever again. Not even until the day they die.

Never, never, never.

Why can’t you stubborn people just listen to us when we say, “no.”

14

The pain of how I was treated pre DX just lashes out at my very soul and the only thing my mom says is that she didn’t know. And my dad just still doesn’t really care.

Typical story I’m sure.

Well its all I love yous now

But the first chance I get I’m going to stab them in the back.

Figuratively speaking of course.

I’m sorry but you just don’t treat people like that ever.

Especially ones that you can see, plain as day, that they are in intense emotional pain.

Its nice that you think the world works that way. And maybe yours will from now on.

But mine shan’t.

Caregivers beware. You’re not mother Teresa and your not special and you don’t deserve special treatment because your lot in life is to struggle with “loved ones”.

May God have mercy on your entitled souls.

Thats coming from someone dxed that sees this on a daily basis.

You people have no idea what its like to actually have the devil in your head. Literally.

So spare me your petty woes.

15

Right. I understand, but I didn’t do anything bad to my son in those ten years, so maybe that’s why we’re OK now. I am sorry about your experiences.

16

My son is very paranoid and aggressive now that he is refusing meds. I’ve been told he has no insight. What bothers me as him mom is that he won’t let me help him. You are so right when you say that worrying is useless. I just cannot let go.

linda

17

When you say, "Spare me your petty woes, " though, you do understand that this is the caregivers’ board, so you are being spared our “petty woes”? You can stay on the diagnosed board and not read our “petty woes” if you prefer.

18

Hey,

Lol I was hiding from this website after I lashed out at the caregivers on this thread. Ha I though you all were gonna gang up on me and try to rip my head off lol. But since I can see this didn’t happen I decided to log in again.

Yeah you know you caregivers should really google the, "side effects of antipsychotic [insert drug name here]"
And also google the “widthdrawal symptoms of [insert drug name here]”

Aggression is a side effect of the antipsychotic withdrawal. Not of schizophrenia itself and it lasts about 6 months. It’ll blow over.

My friend was putting holes in his wall when he came off of APs abruptly. And when I did I just yelled and screamed in my room for like 2 months. But since I had insight into my condition I was prepared for this and I saw it all coming so I told my parents to just steer clear of me.

I know what doctors say. They say APs aren’t addictive. I don’t know why they say that. They defiantly are… Just search the forum about this if you don’t want to take my wordm for it.

And be sure to google the withdrawal symptoms of which ever drug your family member is on. Since all of us sz always just stop taking our meds… Its good to be informed about the withdrawal symptoms.

And you can also give your son a VERY strong chamomile tea to calm him down. Or teas that are especially designed to make on sleep. (Usually a form of chamomile)

It will knock out his aggression.

I also find that Zzz quil (OTC diphenhydromine 50 mg) which is designed to induce sleep… Will knock the aggression and paranoia out of your son if you can convince hi. Too take it.

I use both of these things and they even quiet the auditory hallucinations that I have (voices)

And also from personal experience its impossible to sleep when widthdrawling from antipsychotic.

You should be aware of where the withdrawal symptoms start and the sz ends.

Personally I’ve been much happier off of the APs. You care givers really need to read about these srugs. Ha hen maybe you’ll understand why we don’t take the!.

Disclaimer:

This is not professional medical advice. Please consult your doctor.

19

I’m not talking specifically to you hatty or anyone really.

Just giving caregivers the time of day.

In general.

Nothing personal to anyone really.

20

Thank you. I will suggest the ZZZ quil since he is not sleeping. i had no idea there were side effects for the withdrawal. His paranoia gets him into aggressive moods. Right now he believes we are scratching his dvds. He is happier off the meds. I just wish he had someone he could share his hell with.