Little Things: Life after-'recovering"

Family
1

It’s me again, just looking for somewhere to share my thoughts. I usually shy away from doing it here very often because everyone or most everyone is enduring such stressful crisis’s, the kind I can still remember very well, that I just don’t feel right talking about small mundane things that are easily manageable for me and yet sometimes puzzling.

Still, even to this day I have no one to talk to about anything of intrinsic or emotional significance accept my therapist. Partly it’s that way because I have spent decades on my son(s) welfare and no time growing personal friendships. The only friends left that I can count on live very far away and I have known them for 35 and 45 years respectively, those kind of friends are a ‘horse of a different color’-precious beyond words and yet require no maintenance…or very little. Still I don’t share these things with them either, they know what I am doing and if i really needed them for some reason, I am sure they would do what they could. I just can’t.

Some time ago I mentioned I finally turned several responsibilities over to my son. Simple things that he had a lot of trouble accomplishing at all while ill. I turned over everything to do with his own meds and he handles that very well. The other thing was making coffee, I know that sounds so easy and simple but for a person with disorganized schizophrenia, even a recovering person, things still get disorganized, just not as often. About the coffee though, I use to manage cleaning the pot, making sure he didn’t run out of supplies etc…and when he took over he seemed to have it all under control-or so I thought.

Then yesterday he brings me the coffee maker and shows me brown and white slime growing inside of it, it was so utterly disgusting. I never saw it that bad before and then I remembered we have just moved and it had not been thoroughly cleaned in about 2 months because of all the upheaval and apparently the water here is extremely hard and we no longer have a sink water filter we just have a filtered pitcher in the fridge. SO. My son’s first instinct was panic and let’s throw this away. I said no no…it is fixable. It needs thoroughly cleaned. So I took him through the steps and he watched me closely. I scrubbed the inside with white vinegar and hot water and everything came off. Then I ran white vinegar through it a few times and clear water after and scrubbed the carafe with baking soda and salt and when all was said and done the machine looked totally brand new. My son was so pleased. I think he will do it himself next week. I told him to do this weekly and to only make his coffee with filtered water from now on.

Small event-- I know but inside myself I felt devastated, but I never let on. I was thinking how long has he been drinking slime coffee? Why didn’t he see it earlier? Why did I not check on it before it got bad? How is he not sick? On and on and on and then in the back of mind I am thinking why are you making such a mountain out of this!? I didn’t have any answer. I am just glad I see my therapist Monday. It was not a situation worthy of a sleepless night or two or a whole bunch of mental stress and yet that seems to STILL be my default mode long LONG after the real crisis has passed.

Then I also mentioned that with the move and after 35 years of my son naturally sleeping an extraordinary amount of time and always sleeping from around 3 am to 1 pm every day since infancy. He suddenly started going to be around 11 pm and getting up before 10 am, more like my schedule although I am often up by 7 or 8. Still this whole change I am in complete support of but it is weirdly freaking me out, forgive me but I witnessed my son on one seemingly unshakable schedule for over 3 decades, I tried several alarms of different types, loud noises, cold water, yelling, shaking, rolling him out of bed, so many many things and NEVER could I get him to stir or wake up before 1 or 2 pm on any given day. No amount of berating or consequences ever spurred him to go to bed earlier than 2 or 3 am in all those many years and now, it is so completely 100% different, and so almost “unreal”.

He doesn’t even use an alarm clock anymore and he is often up before me. Sometimes he seems to close his eyes awhile after he takes his meds-while sitting in his chair, and jokingly says he is awake but he is inspecting his eyelids…lol —but around noon, he’s like where are we going today mom? what do we have to do? he’s ready to go and get busy…I feel like I need time to catch up (in a way). This is so amazing (in my world at least) but also for me- surreal. Hard to understand how a change like this can spontaneously happen.

Such is little things these days…nothing dramatic or earthshaking save for what my brain wants me to believe.

Hugs to all of you (if I could) thanks for being here for even the little things. :smiling_face_with_three_hearts::sunflower:

Catherine~

10 Likes
2

Of course you need a place to share the smaller things of life!

I get the destabilizing feeling of even a positive behavior change. My husband has had sleep issues as long as I have known him, but the pattern has taken several different forms and even when the shift is accompanied by good things, I find it a little hard because I have to keep changing my morning routine in response to whatever the pattern is now. In the broader scheme of things, this is just not an issue. But I just a person who is slow to adjust to the day, so once I am used to doing certain things in the morning (whether by myself or with him), there is a part of me that initially feels a little resentful that (once again) I have to shift everything around.

RE: the coffee pot. I had to laugh at that one. I used to drink very disgusting coffee when I was a student, so your son is ahead of the game in my world by even thinking to check the pot and then bring it to your attention! I should hire him to keep my coffee pot clean. It sounds like he now knows a lot more about thus than I do, thanks to a very conscientious mom :wink:

1 Like
3

@Catherine How wonderful to hear you share these positive changes in behavior! You can and should celebrate every accomplishment of any size. I understand that. Today, I was thankful that my son noticed a park as we were driving through the countryside and made a positive comment about how pretty the area was. I can’t be assured of tomorrow or next year, but I can celebrate the good as it might be today. I believe it is important to share these things not only for our own benefit, but to give others hope. You are cared about!

1 Like
4

Ladies, maybe I should take a close look at the coffee pot on the scary countertop in my son’s apartment!! I often blame clutter and lack of housekeeping on the illness, but I think in part it is just a GUY thing (and sometimes they just need to be taught). LOL

3 Likes
5

Ironically, my husband, who normally leaves piles of books and dirty socks around the house, seems to become a total neat freak when he is becoming psychotic. Maybe having a neat clean house helps him cope with the increasing internal chaos?

So although he’s no longer happy to see me when I get home from work, struggles even to take out the trash, and I have to worry about whether or not opening the curtains to let in some air increases his fears of surveillance, the house is cleaner than it’s been since we first went through this a few years ago. At least that’s something?

I must be more relaxed than I’ve been in quite awhile (he’s still on a trip he didn’t tell me he was going to take) because I can actually see the humorous side. LOL indeed!

3 Likes
6

It’s really hard hearing about all these stories of people with debilitating negative symptoms because I attend sz support group where most people with the illness have managed to take control of their lives. I like making coffee too! On the mornings I go to day treatment, I always like to go early and make a pot of coffee.

4 Likes
7

Some thoughts on coffee, sleep schedules and order vs chaos…

My first thought on skimming this thread was what’s Slime Coffee? Is this some new brand I’m not familiar with, like Monster Energy drink? Now that the Keurig has finished brewing my coffee, and my first cup is delivering caffeine to my brain, I think I’ll comment.

I doubt this will reassure anyone, but most of the slime in your coffee makers is minerals dissolved in your water. Boiling water just concentrates them and they form deposits. It’s no more or less harmful than drinking water. Minerals contribute to “good tasting” water, so unless you use distilled water, you always drink them even if they aren’t visible. I’ve worked on commercial coffee makers, and evaporative humidifiers and while the mineral deposits may look horrible, they’re fairly harmless.

When caring for my brother, my siblings and I are on constant vigil for changes. We compare notes, reading the tea-leaves for variations on well-worn stories, rants and conspiracies. There’s an odd sense of comfort with the devils you know, because changes usually signal trouble. And when he seems to do well, your instinct is not to trust it. There must be some catch-- this can’t be real. So you cynically wait for another shoe to drop. In many ways periods of remission can be more unsettling than familiar chronic symptoms. It’s as if he’s been replaced by Eddy Haskel or you feel the need to search for a pod-- as in Invasion of the Body Snatchers.

I don’t talk about it much, as I don’t like to get people’s hopes up or give DX’ed people any reasons to stop medicating, but there are studies that speak of “spontaneous remission”. I know my symptoms have diminished over time, and I don’t work nearly as hard to remain high functioning. I seemed to turn this corner in my fifties, which is also when my sleep schedule changed somewhat and I stopped using an alarm clock.

I haven’t had particularly good sleep hygiene since adolescence. I used to stay up and watch Jack Parr and the Tomorrow Show in the summer. I had trouble getting up in my twenties and thirties. It got a bit better in my forties and now that I’m in my fifties I don’t use and alarm clock unless it’s something out of the ordinary like catching an early flight.

Per the order vs chaos, many people develop schizophrenia before they live on their own, or cohabit or get married. So they never get the chance to learn how to “adult”. So the men especially get stuck in child mode, and the illness both makes it hard to focus or care to learn new tasks and responsibilities and gives them a bit of a free pass or disincentive to learn. Gender bias still seems to shape how much males learn about housekeeping versus females. Self-care isn’t great for most people with SZ, regardless, but if you’ve never learned how to “adult” you won’t pick it up automatically if you start to recover and take an interest.

The way I handled it after I lived alone in a messy apartment for years was to hire a housekeeper to come in every two weeks. There’s a degree of cleaning before the cleaner arrives. Not all of housekeeping is obvious. For example even when I learned about descaling Keurigs, I found it has diminished returns, so I’ve replaced several.

@Catherine, my advice is enjoy the focused time with your son as it lasts, teach him and give him as much responsibility as he can handle. And who knows, it may last. You may need to lean on your therapist to figure out the shift in your role, and perhaps even find or reconnect with friends old and new.

3 Likes
8

This rang so true. It could be why I get that chaotic feeling with ever nuance of change. Funny to say this but I “work hard” to relax…talk about an oxymoron…lol deep breaths

9

@Catherine Thank you so much for your story. This gives me hope for my son. He wants to live with me, and I want him to also, but he is not there yet. I am reading Dr. Amador book a second time and really trying to learn it. Plus I am praying that I will be able to use LEAP. I loved when you said

I will rejoice when or if this day ever comes. Thank you

2 Likes
10

I will rejoice with you my friend. My best to you and your son.

11

It is very reassuring to have this forum and shar the “little” things and the BIG things. The Slime Coffee hit home, as my daughter sleeps so much and has poor hygiene, eats in her room- I finally broke down and went to clean it ( since she won’t) and there were bugs around the food crumbs/filth. Ugh!

The sleep issue is a hard one- I find that when my daughter has something to do, she can get up, 75% of the time. She had a job for awhile, and is looking again. If only we can get those negative symptoms under control!

I am thankful for all of you and your sharing!
Lisa

2 Likes
12

I can relate to the coffee issue. Right now I make the coffee because it’s too many steps for my son to remember. But I’m saving up for a Keurig coffee maker so it will be easier for him to do himself. It’s more expensive per cup
but worth it if it i stills independence in him.
After 16 years of illness with no meds working for him he’s finally on Clozapine which has given him his life back and is slowly but steadily recovering. Every day is a new delight - he’s now walking downtown by himself to play basketball, he’s gotten some of his sense of humor back, he wants to learn to cook, does laundry and is back to playing the piano and guitar beautifully like he used to. He’s very talented.
He’s 30 years old now and only a year ago the doctors said his prognosis was very poor yet we’ve seen miraculous improvement! To everyone on here who is in the throes of the worst sides of this illness I want to say there is hope. Never give up!

5 Likes
13

PS - I hope everyone here knows not to give any form of caffeine to their loved one because it makes the symptoms of the illness worse. I recently discovered that caffeinated soft drinks use a laboratory made synthetic caffeine made in China that is much worse than the natural caffeine in coffee and chocolate. Two things that set off high anxiety in my son and psychotic symptoms are caffeine and especially MSG. After eating Chinese food he will immediately get psychotic even though he was quite normal the minute before. Has anyone else ever noticed these changes?

2 Likes
14

First I am so happy your son is getting better!! I know that feeling when you start seeing the gradual improvements, so amazing! The caffeine thing I understand-- too much caffeine can be bad and aggravate psychosis. Some people may be a lot more sensitive to that than others. My son can drink a cup of coffee a day and 1 Pepsi a day and he is fine with that.

However in the early days of his illness if no one was watching him he would try to make and consume several POTS of coffee and drank many many cans of many kinds of pop, he had no “off” switch and it made him sicker and sicker. I noticed Mountain Dew was the worst, and his change in personality was almost immediate. The steadiness of his habits today make stability easier for him to maintain. Btw: My son’s prognosis was also said to be poor, so I agree with you wholeheartedly! Never give up! :two_hearts:

1 Like
15

There’s a fair amount of literature about glutamates and GABA and SZ. Not an area I study too much as I haven’t noticed any significant effect on me. When I was psychotic and unmediated for the first year of my illness, I had purposely weaned myself down to one cup of coffee per day. I’m not sure it helped all that much, other than making me desperately want that cup of coffee in the morning.

I go back and forth on caffeine. I found it helped with counteracting the sedative effects of typical AP medication and helped me focus at work. For the longest time, I only drank coffee at work and switched to soda in the evening. I gave up both a couple years ago due to GERD, but after I got that treated, I’ve started drinking coffee again. It seems to help me concentrate and like all habits gives you something to do. I’d rather be drinking coffee than smoking, but everything effects people differently. In my times without coffee and breaking other habits, I’ve done both cold turkey and replacing a habit with another habit. Excessive water drinking is my go to when I quit drinking coffee and soda.

16

If your loved one is on clozapine and does drink coffee or other caffeinated products, I know that caffeine can affect the level of clozapine in the blood. But as long as the amount of caffeine is consistent each day, caffeine will not be problematic. I cannot speak to caffeine’s effects on symptoms, I just don’t know.

1 Like