Hello,
I do want to lend my support for you and your family! I am in the same situation except I have been the only advocate for my brother who has had the disease of schizophrenia for also 35 years. His symptoms began when he was 22 years old but he was not diagnosed or treated appropriately until he was 30 years old. You are in a complex situation but not alone! I understand completely! I am brother’s legal guardian and conservator since my father died 4 years ago and since my mother is elderly and currently in hospice. All siblings of persons with schizophrenia will eventually be in our current situations. The stress is real and difficult so be gracious and kind to yourself!
Things I find helpful for coping with the situation:
- Poetry
I find poetry is sometimes helpful by reframing my thoughts. Every year, I re-read this wonderful poem by Robert Hastings – a reminder that the joy of life is the journey and not the destination.*
Tucked away in our subconscious minds is an idyllic vision. We see ourselves on a long, long trip that almost spans the continent. We’re traveling by passenger train, and out the windows we drink in the passing scene of cars on nearby highways, of children waving at a crossing, of cattle grazing on a distant hillside, of smoke pouring from a power plant, of row upon row of corn and wheat, of flatlands and valleys, of mountains and rolling hills, of biting winter and blazing summer and cavorting spring and docile fall.
But uppermost in our minds is the final destination. On a certain day at a certain hour we will pull into the station. There sill be bands playing, and flags waving. And once we get there so many wonderful dreams will come true. So many wishes will be fulfilled and so many pieces of our lives finally will be neatly fitted together like a completed jigsaw puzzle. How restlessly we pace the aisles, damning the minutes for loitering … waiting, waiting, waiting, for the station.
However, sooner or later we must realize there is no one station, no one place to arrive at once and for all. The true joy of life is the trip. The station is only a dream. It constantly outdistances us.
“When we reach the station that will be it!” we cry. Translated it means, “When I’m 18, that will be it! When I buy a new 450 SL Mercedes Benz, that will be it! When I put the last kid through college, that will be it! When I have paid off the mortgage, that will be it! When I win a promotion, that will be it! When I reach the age of retirement, that will be it! I shall live happily ever after!”
Unfortunately, once we get it, then it disappears. The station somehow hides itself at the end of an endless track
“Relish the moment” is a good motto, especially when coupled with Psalm 118:24: “This is the day which the Lord hath made; we will rejoice and be glad in it.” It isn’t the burdens of today that drive men mad. Rather, it is regret over yesterday or fear of tomorrow. Regret and fear are twin thieves who would rob us of today.
So, stop pacing the aisles and counting the miles. Instead, climb more mountains, eat more ice cream, go barefoot oftener, swim more rivers, watch more sunsets, laugh more and cry less. Life must be lived as we go along. The station will come soon enough.
- Books
I also have a book of poems about the grief we experience in life and how we react to that grief. This helps me keep losses in a more rationale perspective versus using denial, repression, projection, displacement, regression, etc… as coping mechanisms. There are many well written books about grief currently, so I would recommend searching for some that may interest you.
Another interesting book you might want to explore is No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America Hardcover by Ron Powers.
- Treatment for Depression
If depression is an health issue for you then, I do recommend both an antidepressant and cognitive behavioral therapy for yourself. When depressed, it is hard to process situations clearly. The stigma is a barrier but treatment can free the mind and improve one’s life satisfaction.
- Laughter
Watch a funny movie. ELF is a good one for this time of year.
- Meditation
Learn, practice, and adhere to meditation. This is a hard skill to learn especially for someone who has had chronic stressors their entire life but it is possible.
Important Things to Share:
- Special Needs Trusts
We set up a special needs trust for him so he can have money from my mother’s estate when she dies, will continue to have Medicaid/Medicare, and he will not have to repay Medicaid back for his past treatments based on the money he would inherit if the special needs trust was not in place. This is very important so that you can assure your disabled brother continues to have financial support after you mother dies (if money does exists in her estate).*
All of this is requires working with an attorney who has the expertise and experience with working with persons with disabilities, serious mental illness, and/or chronic disease. If you have not accessed an attorney with this expertise, then I would recommend you do so ASAP.
- ADLs
Another important issue is activities daily living (ADLs) which include SSI/disability, food, shelter, clothing, and etc…,. My brother became very sick after my father’s death both mentally and physically. At that time we had to hospitalize him for 2 weeks. I requested a social work consult during his admission. I informed her of my brothers history and resources. She found a nursing home/long term care facility for him to live while he was being stabilized. Medicaid pays for his long term care. When he turned 55 years old then Medicare also began to pay a portion of his care. My brother underwent many cognitive and activities of daily living tests once he was stabilized. The tests are objective and inform the professionals of his capacity to function independently. It was determined that he requires an assisted living level of care. Assisted living is not paid for by Medicaid or Medicare therefore he remains in the nursing home. The best situation is to place him a=in the least restrictive living environment but this is not paid for by governmental programs. I have tried to find a assisted living that I could pay for out of his trust but every single facility I have contacted will not accept a person with a serious mental illness (schizophrenia or bipolar). Yes, this is discrimination! If you live in a state that has behavioral health nursing or assisted living facilities then, I would recommend you seek them out. Colorado has the least number of resources for the seriously mentally ill in the United States. Hence, our mental health disasters! Covid-19 has made matters worse so he has not been able to go outside or leave the nursing home for 9 months. I have to visit by sitting outside and talking to him by phone through a window. Crazy but understandable!
- Early Onset Alzheimer’s Disease
One other important issue I would like to address with you that is not common knowledge. Persons with schizophrenia, multiple sclerosis, and downs syndrome often manifest early onset Alzheimer’s disease. Given you mother is suffering from dementia, I feel it is important to mention this. In order to diagnose Alzheimer’s this in a person with schizophrenia, it takes a geriatric psychiatrist with this type of expertise. My brother was diagnosed as having early onset Alzheimer’s during his hospital admission. Once his schizophrenia was stabilized I had him retested. He did not have early onset Alzheimer’s. When he was tested in the hospital for dementia, he had psychogenic polydipsia. This means he was drinking to many fluids. Too many fluids decreases a persons blood level of sodium and causes dangerous mental confusion. Once the sodium (an electrolyte) is normalized to the appropriate range/level, the patient’s mental status returns to normal if there are no other identified causes. Hence, I recommend that you seek psychiatric care from the appropriate board certified psychiatrists and be cautious and/or get second opinions on any of his current and future diagnoses.
- Medication Adherence
Daily oral medication administration is one possibility (as he his getting it from your mom’s home health aide). Another possibility for non-compliant patients or patients with barriers to daily oral medications is a medication called Prolixin Decanoate which is an injection. The injection (shot) is administered once by a licensed professional. This might be a discussion to have with his psychiatrist. Obviously, your brother has to give you permission to speak with his doctor according to the federal law HIPAA. You may want to reach out to his psychiatrist and request that he/she has this discussion with your brother and obtain his permission. If you are his legal guardian then this is not required and you can participate in his chronic care management. Notice the word CHRONIC.
- Chronic Disease = Schizophrenia
Schizophrenia is a chronic disease therefore, he will need care management for his entire life. If your brother has a substance use disorder then, the complexity of his care requires even more dedication throughout time. This is the same as any other chronic disease/disability in which the affected person will require family caregiving for their entire life. Schizophrenia is difficult but the physical limitations required for one to one total care for spinal cord injuries/disease, progressive neurologic diseases, and cognitive diseases/brain injuries can also be as demanding. Unfortunately, we all are not blessed with perfect physiological processes. Health prevention, promotion, maintenance, and therapeutics takes work and requires professional assistance. Illness takes even more work and professional assistance! I have found that when I become fatigued with the challenges of my brother’s and mother’s health complexities, I take intermittent breaks. These are tough situations and you do need all the help you can get from anyone that desires to be involved or is professionally involved. Accept assistance whenever feasible. If your county mental health services offers professional care management services then, I would recommend seeking their assistance with your brother’s disease process.
- Blessed and Grateful
I would like to remind you that the schizophrenia disease process is a genetic one. This means you are the lucky one! You could have been the child who manifested the disease/schizophrenia. This is your blessing and you should feel grateful! The burden maybe unfair but you may be his only familial support. The disease process has both positive and negative symptoms. The positive symptoms are the hallucinations and delusions. The negative symptoms include blunting of affect, poverty of speech and thought, apathy, anhedonia (inability to feel pleasure), reduced social drive, loss of motivation, lack of social interest, and inattention to social or cognitive input. Your brothers disinterest in your life is not intentional on his part. His disinterest falls within the negative symptom category. He disease causes him not to be interested in you. You both have a surface relationship because of these negative schizophrenia symptoms. My brother can not be socially stimulated for more than 20 minutes (maximum) at one time. He is unable to handle the bombardment of sensory input which is also part of the disease process. Blaming him for these uncontrollable or untreated symptoms (disinterest in you and surface relationship) is inappropriate since he is truly unable to either control them or overcome them.
. The more I think about it, ‘pro wrestling’ is an apt metaphor. Caregiving can be bizarre and melodramatic and often unreal, but can also be a dangerous sport if you don’t know how to take a punch.