Family and Caregiver Schizophrenia Discussion Forum

Unraveling the "caretaker" ties one single thread at a time


#1

Just an update on things with me and my adult sz son now 34. Most of you know my story…my “from pure hell to incredible peace” story. It’s been a 13+ year journey that continues…

I feel like I am in an entirely new phase with him and I am pretty sure he doesn’t even know we’re in a new phase. Little by little at an excruciating snail’s pace I am turning over my control and my “care” of him back to him…while somehow not alarming him to the fact that I am actually doing that.

I posted about a year ago that I turned over his daily meds to him and he has done phenomenal and only forgot them maybe once or twice since last year. The hard part was when he made a mistake not jumping in and announcing it and getting all protective and worried…I had to leave the mistake for him to discover and then I could ask him about it and I saw the look of worry on his face when he discovered his error and I reassured him that a mistake once in awhile is only human and not to worry he was doing fine. Heck even I made a couple of mistakes giving them to him so it is indeed a human thing and not a fault to belabor.

Now I am trying to get him to do the pills in the containers for the entire week, a different task entirely, so I showed him my method of all the pill bottles on the left, containers in the middle and doing one pill bottle at a time, as it is finished I place it on the right, one at a time, slowly and thoughtfully…I had him do it last week, he was very cautious and he did fine…we’ll keep doing that in tandem for awhile before I stop overseeing it entirely.

He loves deviled eggs so systematically I am walking him through the steps of making everything that he loves to eat, so deviled eggs was first. Next is the cheeseburger which I took over initially years ago for fear of a grease fire because he refused to cook on anything but high heat and would not keep watch over the food…I think the cooking aspect will take the longest. He gets frustrated easy with cooking.

Bathing is improving…after staying at twice a week for the past 5 years, prior to that was barely once a week…this past month he started showering 3 times a week ( I know because there were 3 pairs of boxers in the wash-- which we do every Wednesday, and it has been in the 90’s here so very very sweaty. We’ll see how that progresses or if it lasts fingers crossed

I am also encouraging him to make his own appointments in spite his phobia about talking on the phone…he has done a few so far and has done quite well in spite of his self doubt. He writes every thing in a notebook in great detail. Curiously I am really noticing an almost imperceptible lightness about me with each task he does for himself no matter how small.

In the future I am going to increase sending him out to shop for ingredients for meals on his own, there are stores within walking distance of us and so far he goes for 1 or 2 items fine…and any more than that I get a call of confusion or he tries to encourage me to just put off getting the 3rd or 4th items until later. It is all a process and as I mentioned early an excruciatingly slow, repetitive process full of calming deep breaths…it is teaching without the student even knowing he is learning…with my son he think’s he’s helping me and he is indeed helping me and also himself in the process.

Some of you know that last year I took my very first trip out of town overnight without my son and left him alone. I visited my best girlfriend from high school who lives one state over…a 5 hour drive…I stayed the night with her and drove back the next day…he texted me the entire time…I had meals pre-made and gave him money for meals out a couple of times…everything was in place when I left and he did very well and coped better than I could have imagined. other than going out for food he stayed in the house the rest of the time but meds were taken and food was eaten and he stayed well and the place was in tact when I returned. True cause for hope and celebration. I am planning a couple more of these trips this year.

There is a LOT to hand over to him. It does take time and patience and perseverance. Like all things with my adult sz son it is a labor of love. It’s not only about him learning to do for himself again it is in part me seeing my way clear to let go safely without feeling like I am being irresponsible, which consciously I know I am not but this has been decades of dedicated care I can’t risk mistaking the true level of his capabilities too quickly and potentially losing a lot of hard earned progress…that might set us both back.

I know that he will not ultimately handle things with the eye for detail and accuracy that I have honed for myself all of these many years and that is okay. I have to be okay with that. He will eventually develop his own way of doing things once things are basically mastered. It’s the mastering that has to sink in and stay put…thank goodness for his trusty notebook.

It has been a lifelong dream of mine to visit Paris, France. It is at the top of my bucket list. I dreaded confessing to my sz son that I really did not want to make that trip with him even though we talked about it off and on over the years, I really wanted to make the trip with my best friend from high school who shares this same dream with me.

Last week I nervously said to him “hypothetically” what if “someday” I went on that trip with my friend and he stayed here by himself? He quickly said “Sure mom! that sounds great! You should do it”

I thought he would be crushed and his response left me stunned, then I was thinking “should I be happy or scared?” LOL —but ultimately I was happy that he was very open to the idea and so I asked my friend what she thought about it and since both she and I have no wealth and live on very fixed incomes and have people we both care for we have decided this will be a long term “project” for us to start to plan for maybe 3-5 years from now depending on our circumstances…and how well we can save up----because we have to PREPARE to leave…but wow!! …to have my own personal dreams again that really don’t involve my adult sz son…truly amazing to me that I see the real possibility…and so exciting! It makes being an excruciatingly patient “teacher” day after day so much more bearable and very much more rewarding.

My best to all of you at every stage of your experiences. My heart is always with you.


#2

Catherine,
Thanks for sharing! It’s encouraging that there may be light at the end of the tunnel. One day at a time is all we can do and keep trying.


#3

Thank you for this Catherine. You’ve come such a long way with your son. So much progress has been made. It’s truly wonderful.

I remember your excitement and then relief when you went to visit your friend. I can certainly appreciate the importance of that milestone.

I’m pretty certain our son will be with us for the long term, just as your son is. Preparing him for when we’re gone is always on my mind. Always. Your post was inspiring.


#4

Oh Catherine, I love, love, love reading your posts. They have never failed to lift my spirits and give me so much hope. Going to Paris, wow, that is awesome. Speaking of setbacks, my daughter spoke with her therapist about seeing a comforting figure she has had since childhood, but rarely sees anymore standing at the hearing holding her grandmother’s beloved cat. She told her therapist she was upset that she had a setback. He said it was not a setback, it was a symptom and if her goal is to live completely free of all hallucinations, she was setting herself up for disappointment. He said in times of severe stress, which the hearing certainly was, she might have hallucinations because that is the nature of her illness. It felt reassuring that she does not have to think of it as a setback.
I would love to know that my son would look after his sister when I am not here. He once said he will not be taking care of her when I am gone, it broke my heart. I am trying to get to the point where I can get a very modest home that she can maintain with her SSI income. I am not asking my son to greatly interrupt his life, just keep check on her to see if she has what she needs. If my daughter gets any back pay from SSI, I would like to establish a special needs trust fund for her that my son would manage because she is not good with money.
It truly is one day at a time and progress seems so painfully slow and then, like you and your son, you are in a peaceful place.
Much love and prayers for you and your beautiful son.


#5

I actually didn’t know the whole story and what an encouraging story it is. I will copy it into my encouraging reading document. Thanks for sharing the whole story. Planning for trips is one thing that keeps me going. I’m sure the planning will be almost as fun as the going!

download


#6

Merci beaucoup for sharing your story.

My 46-year-old son is doing much better finally also.

And as you said, patience and small changes are really important.

Do you think your son will be able to work in some capacity again?

from NW Vermont,

Maple Woman


#7

I honestly don’t know yet @VermontWoman1 that is a very good question. I have mentioned part time night work on occasion and I think his self esteem is such that he doesn’t even want to attempt it for fear of failure. I am not sure how his negative symptoms would affect potential work. I have so much to instill in him in the next few years-now that I see the potential for it to stick, getting him to work is not at the top of my list. In my mind I picture him (one day) doing something maybe at the local grocery, maybe stocking or clean up or doing carts…with his sleeping habits it can only be at night… time will tell. I am so glad your son is doing well,


#8

I tried to e-mail a response, so this might be a repeat.

I say my son is “better” but beneath the surface lurks a stranger

who can easily become angry.

I know what you mean about sleep patterns and self-esteem.

Fitting into the business world in any capacity is very very difficult.

It’s a great comfort to have someone to knows what this disease is like.

Look forward to hearing from you again.

Maple Woman


#9

This is so encouraging to hear! I’m so happy for you and your son. Thank you for sharing.