Family and Caregiver Schizophrenia Discussion Forum

Newly diagnosed!


#1

Hi, my son was diagnosed as of October 23rd after his first 7 day hospital stay. He has been hospitalized twice since then and was recently released on Friday after a couple of days. He is 19 and was set to attend college in Jan. Now we are trying to navigate this new normal. He is on respiridol consta, and prolixin consta. He was originally placed on respiridol 2 mg once a day, but he kept having episodes. The new dosages are causing him to experience EPS already, and now he doesn’t want to take the oral portion of the regimen. I just need some guidance in all aspects. I’m sure many of you can vividly recall how you felt in the beginning. I’m just asking for you to share the information that you wish you could have gotten in at the beginning of the diagnosis.

Best,
N


#2

First, I am so sorry about your sons diagnosis. Second, nothing you did caused this and nothing you can do will cure it. Our job is to love them and help guide them. I think I would have gotten my son in a peer program early on so he/we could learn everything we could about how to have the best life possible despite this illness. This is still my goal 5 years in. There will be daily challenges, especially in the beginning and this will teach you about unconstitutional love. It is possible to still laugh with our children and I hope yours will allow you to hug them. That is something I am thankful for. My son gives really long hugs and boy do I need them.
I have found that we need to be clear and firm with boundaries with him for the safety in our home. I wish you the best and hope you know how welcome you are here. Everyone here knows your heartache and can share in your news. Good and bad. Hang in there. It sounds like you are already doing a lot of things right.


#3

@Mom2, sadly but grateful, this is not my first run in with this illness. My mom’s sister was diagnosed during her early twenties, and she lived with us for quite a while. I suspected that he had some issues, and that schizophrenia might be the culprit. I guess it was a blessing to have interacted with her. I thank you for your response. I’m currently looking for support groups for him as well as the rest of the household. I have 2 school age children and 2 adult children in the home too, so we’re all in search of support. I’m just glad that I stubbled upon this site.


#4

Hello, welcome to the forum.

Quick note: EPS symptoms sometimes resolve on their own after a few weeks; if they don’t improve, is it cogentin your son won’t take orally? Hopefully the doctor will be able to resolve this if the symptoms don’t disappear on their own.

Yes, I second @Mom2: This is a medical illness and not your son’s fault or yours or anyone’s.
Also to establish boundaries for everyone’s safety and physical health.

“It’s a marathon, not a sprint.”

Educating myself about the illness, local services, and crisis resources was vital. Finding emotional support from a group of people going through similar also helped me: nami.org

Only one of my close family members was really able to show up and help at first. Slowly, over the years, there has been more help and day to day support from one other close person. At first I was angry and felt we had been abandoned; now I understand that some people do not comprehend mental illness and cannot or do not have the time and emotional capacity to learn. If possible, create a strong support system of family and friends for your son.

When something does not work, I learned to move on. A doctor kicked my family member out of an entire practice for “non-compliance” and I spent too much time trying to fix the situation. Found another, way better doctor who understands the illness and that people oftentimes won’t take medication. I learned to spend my limited energy on positive, forward motion. I learned to leave behind what wasn’t working and not look back.

Day to day life is easier with calm, low stress environment. Eating, drinking water, and sleeping are priorities.

I learned to prioritize safety and health and “not sweat the small stuff” so to speak. A psychologist told me to lower expectations, actually to drop all expectations for college or work for my family member. That helped me and created less pressure for person with the illness. Whenever my family member expresses interest in positive activities, I support and facilitate as much as is wanted.

The vast majority of doctors and other professionals know what they are doing and are doing their best for our family members. I felt a lot of anxiety when reading about drug side effects and not knowing what was happening during crisis. My anxiety got in the way of my family member’s treatment when I questioned a drug protocol; I know now that my own ignorance was not a reason to doubt medical treatment. But also trust yourself if you think your son needs medical attention.

With every medication, there is a risk/benefit analysis for each person who takes it. A medication trial usually lasts six to eight weeks if there are no “black box” side effects or other cause to discontinue.

There are good days and bad days, just like in regular life, but with a broader range. The good days are meaningful; I hold onto these and try to let difficult times go. I try not to anticipate bad days; I try not to worry about things that might happen.

As far as interacting with a person who has positive symptoms of psychosis, sounds like you already know from your aunt to leave the person plenty of time to respond.

The person who has the illness is the same person they always were, though also changing due to normal development as a young adult. It’s really important to me to be able to see the growth as well as the struggles.

As difficult as the illness is to witness, it is way harder to have it. Our family member’s bravery and strength in the face of this illness is incredible. I am extremely grateful to him for being here.


#5

This may sound like an odd response in the scheme of things, but it has made a world of difference for our family…

We set up a way to separate ourselves (with locking doors) from our son, so that when he’s in an acute phase or simply having a bad hour or two, we can have peace, yet know he has everything he needs. We don’t have to feel guilty or subject ourselves to things we don’t want to subject ourselves to.

I know re-arranging the physical space of a house isn’t always possible, but we were able to do it. In his separate area, my son has a mini-fridge, a toaster oven, a microwave, and a TV. I always make sure he has his own food and food prep materials available for emergency situations.

This will be a marathon. There will be good days/weeks/months and there will be bad ones too. There’s only so much we can do for our loved ones during the bad phases (ex. When they’re refusing meds and becoming acute), so we have to find ways to preserve ourselves and have our own peaceful sanctuary.

If you can’t create a separate space for him, maybe you can create one for yourselves and the other members of the family?


#6

I know that my son was always given Cogentin or Benadryl to help with the Parkinsonian symptoms. We were lucky in the sense that they did not trouble him too much. I would say - learn as much as you can. We had one counselor that gave us so much information. He counseled my son years before his diagnosis and he was so supportive. He would email or give me information and journals that he received. He treated me like an intelligent woman that could learn and understand and help my son. He was really the only professional to really talk to us. In fact, the professionals helping us did not think we should even use the word schizophrenia around my son. Our area had a program called FIRST - as in first psychotic experience. Oddly enough - I found this on my own and was not referred by the hospital. When I asked the FIRST program why they didn’t give their information to the hospital to be given to families with this diagnosis, they said they did give it to the hospital. We never received the information though. My son said to tell you that taking the medication can be very frightening but now that he is on something effective he is so glad he takes it and is much more insightful about his illness. Don’t overload yourself. There is so much to take in and to deal with. Be gentle with yourself and your situation. Don’t get discouraged by things you read. Every case is different. Do not take time to feel guilt - it is totally counterproductive to all involved. This forum has been helpful to me and I never thought I would participate in something like this. The people who post are very supportive and caring.


#7

While we wish no one had to deal with this illness, WELCOME. This forum doesn’t have all the answers, but it has the power to lift us up when we are having a bad moment and a place to share some positives.

Much of the advice already posted is good basic advice, I would like to add, try to keep a sense of humor about this new normal you have. What our loved ones go through is not funny, but some of the situations are better tolerated if we react with a smile and a nod…and then come here to vent :slight_smile:


#8

Sign yourselves up for NAMI’s Family to Family class - and take the whole family. Our local NAMI runs Peer to Peer programs at the same time, your son can attend Peer to Peer while the rest of you attend FtF.

Glad you have experience with scz, the wonderful group of people here represent the many ways a family can be affected by a beloved family member becoming ill with scz.

We have all agreed that none of us gets a walk in the park while dealing with this illness. Do remember that some of the people who aren’t here anymore have been able to get their loved ones "back out with the rest of the world’. They check in from time to time to update us on their progress. I have only been here about a year and I found the long timers perspectives to be always helpful, sometimes just not what I want to hear. Often the forum can seem a little dark as people do turn here for help during difficult times. Just telling someone else about what is going on during stressful times can be a big help. Our difficult times aren’t anything that other people can begin to comprehend. Best of all, people here have practical advice for dealing with a crisis situation.

You will usually get different answers when you ask for advice. Some answers will apply to your situation and some won’t.

The 3 C’s are always good. As stated by others, you didn’t cause it, you can’t control it, (even though some people do have wonderful success “controlling” their family’s member’s illness by getting them on meds and keeping them on meds) while others, myself included, well, its not something we can control at all, the trick is to figure out will work best for your family member - which leads us to the 3rd C - Coping. Coping sounds small, but its huge.

You didn’t cause it, you can’t control it, but you can cope with it.