Good to hear you and your family got some relief from your brother s illness. It is great your family is able to enjoy some family time without you brother being the main focus. What a relief for all of you!
There is so much in this conversation that is speaking to me today. I appreciate reading from family members who are dealing daily with their loved oneās schizophrenia. It is incredibly grueling! Iām here today because for the first time my son told me to āF offā ā by text. He is in Mexico City pursuing his delusions that he needs asylum and a neurolink removed from his brain. He will be 30 next month and has suffered from MI since college graduation week at age 22, almost always living at home in Washington State with us. Yes, heās on medication (Vraylar currently) but nothing has put a dent in his delusions. Heās on SSDI.
The lack of reason this disease causes is devastatingly sad. For me itās one of the hardest parts, since he was so scientifically-minded and damn smart before. The death of hopes and dreams we had for our son hits me like a ton of bricks daily. Many of you are handling this alone; I donāt know if I could make it through all this without my husband - and my faith.
I have not posted here before, but wanted you all to know how much I appreciate the camaraderie offered here. Please keep sharing. You have touched me today.
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Nice to see you on the site @kindmom. The grief that accompanies this illness is soul penetrating, and it is very hard to let go of the dreams we as parents had before our children got ill. Good for getting your son on SSDI and Iām sorry he was rude to you today all the way from Mexico. Remember the rudeness IS the illness talking. Take care of yourself.
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Thank you, oldladybue. After posting, I felt a true sense of relief. Sharing our burdens is essential. Yes, the disease has him in its nasty grip. I hope your day brings some joy.
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Your post hit my heart, my son is always alone, except when he is with me, or when his sister visits 3 or 4 times a year from out of state. I get drained from spending time with him and feel sad that I don t want to spend as much time with him as I did in the beginning of this horrific, never ending schizophrenia. My son seems like he is getting used to his isolated life sometimes, other times he complains he is very lonely and he has never had a relationship. Anyways, it is beyond heartbreaking, I get comfort by going to support meetings and a few good friends. My sonā s altered life, the life I never knew people suffered from, has made me have a weary sadness that never really goes away and a worried feeling that is always there. Anyways, still learning to accept life as it is and hoping for a miracle. I guess things could always be worseā¦
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My son just turned 28, how is your son doing, is he back from Mexico?
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Yes, the everpresent worry is exhausting. None of us knows what tomorrow will bring. Fresh horrors or some relief? I often sadly reflect in his āwastedā life - but friends remind me perhaps his purpose is about others and not himself at allā¦ An extremely difficult idea to embrace.
Thank you for asking about my son. He planned a 3-week trip (July 4-25) to Mexico City, organized it completely by himself, including saving up SSDI and buying his plane ticket and arranging for a cheap airbnb. He even payed me in advance for the ability to use his phone while in Mexico. He is most definitely a ālonerā nowadays. He puts on a persona with the general public (and doctors) and really only shares his extreme delusions with us, his family. He has two older sisters, both nurses, who love him to pieces and a wonderfully supportive extended family network. But reality is not something in his toolbox. The whole trip south is based on persecutory delusions, as I mentioned before. In the last few years he has believed his dad and I are spies, etc. The lengths heās gone to have revealed just how deeply his delusions are entrenched. Before he cursed at me while texting (when I suggested he might find relief here at home with a new medication), he wrote āWell they said 3-6 months tops for the government espionage to end, and if not theyāll try and send someone to help with asylum. So now you can be honest at home!ā LORDY! Now he has blocked me, but I believe that will settle down.
You mention acceptance, and I do think that is the key. Hugs to you.
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Something very important I learned, but it took so long to learn, is that you CANNOT change someoneās delusions or hallucinations. You really cannot even question them. Trying to change the loved oneās delusion or hallucination only causes chaos in our relationships with our loved ones. If he has persecutory delusions about you and your husband, that IS quite common. My daughter had them about me and her step-father. At first it caused upsets and fights, but finally, I learned to never outright disagree. Often I just changed the subject.
The LEAP method of Dr. Amador, from his book Iām Not Sick, I Donāt Need Help is, to me, the BEST tool. Have you read the book? I had to read it 3 times, yes 3 times in a row, to figure out how to listen and empathize with my daughter in her psychosis, and what to agree with. But we agreed on one small change at a time, and ended up as partners in that new activity.
It isnāt just acceptance, which is important, but a way to change what we can change, for the betterment of the new life our loved ones MUST live. We have to do what we can to listen, empathize, agree (even if it is to agree to disagree), and partner (LEAP) to help them. It is so awful that schizophrenia robbed them of their old lives but we HAVE TO concentrate on somehow bettering bit by tiny bit, their new lives.
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Just now seeing your response, oldladyblue, and I appreciate your wise words! Yes, Dr. Amadorās book offers much help in our relationship, considering the delusions that have worsened over the 7 years of my sonās schizophrenia. Changing the subject and stating things like āThat sounds frightening for youā and āIs there some way you think I can help?ā have gone a long way for me. My husband still thinks he should state āWhat youāre thinking is incorrectā but he tries! We both often get tired of listening to the delusions. The key for us has been to stay CALM.
When you write āchange what we can changeā I am more at a loss, since currently I feel thereās no hope of changing things with our son so far away right now. I will need to focus more on the PARTNER element upon his return. That brings hope.
Thank you, again.
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Sigh, I understand how feeling like you canāt change anything can weigh very heavily! I was there many nights.
What I mean by āchange what you can changeā is that sometimes there IS nothing you can do but let things play out. You canāt change them. During those times, the only thing you CAN change is yourself. I would say that trying to find the āglass half fullā in even a helpless feeling is what you CAN change. Perhaps just knowing that your son is pursuing his own wishes is something you can be positive about? Try to find positives in his trip, even if you disagree, and let yourself smile and hope him well in your imagination.
I know that some on this site have loved ones who are inactive, catatonic, unreachable, or gone to their next life and would like to see them out in the world, even if doing something totally silly.
You have been helping him for 7 years, doing your best, so right now, just relax and let things play out, hard as that may be. I remember āwastingā the nights I was alone at home (when my daughter was on involuntary holds or in jail and my house was finally quiet from her nighttime rants) by staying awake worrying. The only thing I could have changed then was myself, and my worried attitude, and I couldnāt do it the first 4 times. Finally, I realized she was pretty safe where she was, and to stop beating myself upā¦
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Hi kindmom, I just wanted to chime in as my son did 2-3 week trips once a year for many years. He was big into camping and hiking, like your son, he did all of his own arrangements. Also like your son, he took those trips as a break away from his delusions. He badly needed a break away from us and his delusions that we were persecuting him. Each year the trips grew longer as he ventured further away from home. Even after he relocated about 5 hours from us, he continued his yearly trips. He always made it back, sometimes he got help along the way. He tells us that while hiking up a trail in the Rockies his first year, some wonderful people insisted he take one of their flashlights. Each year he was better prepared and he loves to talk about those adventures. Looking back, I am really glad he had those trips, they gave him something to look forward to all year long.
I think you are right, acceptance is the key to getting off ground zero. One of my favorite phrases is āHolding on is believing that there is only a past; letting go is knowing there is a future.ā I wish I had heard, understood and accepted that phrase much earlier.
And your son will be home from his trip in a few days!
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What great adventures your son has had, Hope! I can tell how much love you have for your son. Our son also hikes and backpacks regularly and takes 3to5-day solo trips in the national park very near our home. I know he knows how to take care of himself, so I celebrate the fact the trips bring him joy, when others might be fearful of solo backpacking. SZ can be so limiting (he hasnāt worked in three years and all his friendships have diminished) that itās great to see passion in some form.
I like āLetting go is knowing there is a future.ā
Yes our son will return on Tuesday. He texted my husband, although it appears Iām still blocked. Iām assured that will be resolved. Apologies arenāt his strong suit, but I know he loves me and he often tells me how much he appreciates me. Such a strange illness full of dichotomies, since Iām also at times a āspy.ā
Our solution in an extremely challenging local rental market is to provide him with a camper on our land. This is very new for us, since he spent the last 10 months in a ADU rental 20 minutes away, but the homeowners sold their placeā¦ Anyway, loads of adjustments ahead.
Thank you for the note of support!
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Hi, I hope your son is enjoying his trip as much as possible. Hopefully he will come home with a little clarity about his delusions, but with this illness it seems not likely. My son was on vraylor drive about 10 months, but he became very manic on it, never sleeping and having so many bazaar delusions. He switched to Abilify over 3 years ago and that doesnāt t make a dent in his delusions or compulsive, addiictive behavior. He has gained over 150 lbs in the last 2 years and barely looks recognizable to those who haven t seen him in a while. He eats constantly and is always āstarvingā. He complains his body hurts all the time and barely walks. He used to be very thin before all this started and active. Anyways , he refuses to go to a doctor about his weight, and doesnāt seem to associate his weight gain to his constant eating. All this along with constant paranoid delusions. He doesnāt clean anything in his place, so I come in and do a garbage pick up every week or so. My daughter is visiting from out of state now for a few days, so we cleaned his place today while he played video games, but he ended up accusing me of stealing his book?? Anyways, it seems hopeless now, but this cannot sustain itself, my son s health is deteriorating. I have told his psychiatrist, but not much anyone can do, as my son doesnāt want to help himself. He isolates most of his days, with an occasional trip to run an errand with me. Good luck when your son gets home soon, hope he had a nice trip, and it is good he is functional enough to go. The camper idea on your property sounds like a solution that may work for a while. Prayers and hugs to al, us caregivers and may we al, have some peaceful, joyful moments.
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Hi, Acceptance is hard and I am trying to learn to detach from all this craziness sometimes and take a break for some normal activities with friends and just spending time alone on a hobby like gardening or walking or taking a nap. It is hard not to get obsessed with their illness when things are going badly.
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Yes, it is an all consuming thing, schizophrenia, for our loved ones, for their family, for their friends, for life. All in contact with the person taken over by their illness are all eaten up by the horrible hunger the delusions and hallucinations demand on attention.
The key for me was to realize this fight was gonna be for years, and I had to take care of myself first. So I took the needed breaks away, the āmeā moments.
Like on an airplane, the mother puts on her oxygen mask BEFORE placing a mask on her child. Like a lifeguard has to have his lifesaving equipment (floating belt) on before touching the drowning person or BOTH are in danger of drowning.
Keep your own self afloat somehow!
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Thanks for all your kind responses and great suggestions. I am trying more to detach from the illness when I can and try to do something to get my mind off of it, otherwise it makes the caregiver feel crazy and you become obsessed with their SZ. Also it is important to spend time with our other loved ones, as our SZ loved ones take soooo much of our time and thoughts.
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I know it was difficult for me to find the way to get my mind off my son. Iām a retired coach and I had been turning down requests to train players (too busy trying to solve my son). A request came from a very young team that I couldnāt turn down due to a personal connection. I did find that being on the field with all the demands of young players worked. I fully engaged and finally my brain only had room to focus on the moment.
The biggest surprise was how much better I felt. For me, I needed something that would be demanding and something I loved.
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Thanks Irene.
I needed to read this tonight. It helps to lift me for another day.
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Hope, I couldnāt agree more. Taking care of me comes with a lot of āpick yourself upā attitude; a lot of guilt for the times when you do pick yourself up; and, at times, just feeling completely sad and sorry for yourself (which is not a good zone to stay in for very long ā¦ leads to all kinds of crap that you self inflict). I cannot emphasize enough the importance of making you, as a caregiver, a priority. Sometimes I say no to doing everything all the time for my spouse. Initially, there is guilt. Who am I kidding, there always seems to be a little guilt when you choose to put yourself first. But it is necessary and makes you a better caregiver if you can balance your life so that you feel you still have one. Good luck everyone. Cheers to us caregivers. Keep going! K
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Hey, can anyone help me to sort out the exact answer to the question on how to go on caregiving? There are more than 60 replies and this much information can make it difficult to find the exact solution @admin can you help us and pin the best answer on top?
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