照顧心理疾病者的建議 | Advice for Mental Illness Caregivers

Mental Health Association for Chinese Communities 美國華裔精神健康聯盟

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撰寫者:Katherine Ponte 和 Izzy Goncalves

原始來源: https://www.nami.org/family-member-caregivers/advice-for-mental-illness-caregivers/

2021年11月10日


我患有嚴重的心理疾病。因此,心理疾病也成為了我伴侶兼照顧者 Izzy 生活的一部分。在這段長達 18 年充滿挑戰的康復旅程中,我們倆學到了許多。我們希望分享一些幫助我們走過康復之路的經驗。


與你所愛的人同在當下


幫助患有心理疾病的親人,通常從了解他們目前處於「改變的五個階段」的哪一階段開始,並依此調整你的行動:

• 前思考階段(尚未願意接受協助):表現同理心並避免批判。

• 思考階段(意識到問題但尚未準備改變):認識到改變是困難的,並一同思考接受治療的利與弊。

• 準備階段(表示願意改變):協助你所愛的人設定目標。目標應具體、可衡量、可實現、合理並具時效性。

• 行為改變階段(開始改變/積極參與治療):強化對方的正向行為。

• 維持階段(維持改變成果):持續提供支持。


傾聽他們是否有「改變的語言」,並在每個階段提供支持、安慰與鼓勵是非常重要的。同時也需要耐心(但在緊急情況下,親人應有權依最佳判斷行事)。對對方施加壓力,可能導致抗拒,進而延誤治療。


為了溝通而傾聽


與親人展開對話是幫助他們獲得所需協助的關鍵。照顧者可能需要主動開啟對話,而最好的方式是表達你對對方關切的真誠興趣。


不要直接告訴他們你能如何幫助他們 —— 應該先詢問:「我能幫助你嗎?」以及「我可以怎麼幫助你?」尊重他們不想談論現況的意願。「我需要和你談談」通常不是開始對話的好方式。如果他們不想談,較好的做法是溫柔地提醒他們:當他們想說話時,你會在那裡陪伴他們。


幾種有效的溝通工具包括:

• 動機式晤談:這種技巧試圖激發對方改變的內在動機,例如達成特定人生目標。

• OARS 技巧:是動機式晤談的實踐架構,代表開放式提問(Open-ended questions)、肯定(Affirmation)、反映(Reflection)與總結(Summarizing)。

• 積極傾聽:是一種投入式傾聽,透過回應對方所說的話來表達理解,也能幫助他們反思自己的想法與感受。


對過去的錯誤展現同理心


與親人談話時,始終表現出同理與關懷是很重要的,包括談論過去。許多心理疾病患者意識到自己在發病時曾做出不當行為,甚至可能對過去的錯誤感到過度懊悔。


如果你發現對方正積極努力改善行為,最好不要主動提及那些過去的事件。提起這些可能會讓康復之路更艱難 —— 畢竟,他們無法改變過去。更好的做法是專注於當下與未來的目標。


鼓勵自我賦權


心理疾病可能讓人覺得自己無能為力,失去對生活的掌控。他們可能會讓照顧者完全掌控治療計畫,因為難以接受診斷或對未來感到迷惘。然而,自我賦權是康復的關鍵。


請用開放式問題與對方討論他們的想法,幫助他們主動參與自身的疾病管理與治療決策。當照顧者尊重並信任對方的選擇時,這種自由感能增進雙方的關係。


治療方式本身也可以具備自我賦權的特質。例如,「共同決策模式」就非常有效 —— 患者向醫師說明自身優先事項,雙方共同制定治療計畫。這種以生活目標為導向、而非僅處理症狀的方式,能帶來更大的動力。


實踐正向增強


照顧者應該努力認可並稱讚每個小小的進步。當親人處於嚴重憂鬱中,起床、洗澡或吃東西都可能非常困難。完成這些日常行為,本身就是一項成就。不要將憂鬱症患者的低活動力誤認為懶惰。


康復通常是由一連串的小成就組成的,這些小進步可能累積成更大的突破,例如找到工作或搬進自己的住處。鼓勵親人懷抱夢想、追求目標,並在過程中給予實際可行的建議與支持。


避免直升機式照顧


所謂「直升機式照顧者」,是指對親人照顧過度,過分介入他們的生活。簡單來說,就是讓對方感到被持續監視 —— 照顧者彷彿隨時盤旋在身旁,對可能的發作或危機高度警覺。對心理疾病患者來說,這種過度介入可能令人窒息、失去自主感、沮喪,甚至感到憤怒。儘管照顧者出於善意,但這樣的行為可能導致患者退縮與疏離。


常見的例子是照顧者一再堅持聯絡精神科醫師,使患者感覺被「打小報告」。他們可能因此擔心醫師會更相信照顧者而非自己,或者醫師會因此改變藥物處方。這些情況可能嚴重破壞患者對照顧者、甚至醫師的信任關係。


許多照顧者並未意識到這種行為可能造成的後果。例如,心理疾病患者可能會撤銷或限制醫師與照顧者的溝通許可。


吸收同儕經驗


同儕之間可以互相支持、啟發並促進彼此的康復旅程。事實上,許多心理疾病患者比起醫療人員,更願意與有共同經歷的同儕交談。這是因為同儕能提供無法從臨床專業學習的寶貴洞察力與希望。


對心理疾病患者與照顧者而言,理解是建立良好關係的關鍵。雖然心理疾病往往需要全家人共同努力,但更重要的是讓患者有責任感、自我認同與自我賦權,這樣才能真正提升康復效果。當患者在治療過程中獲得更多主控權,他們更可能走向康復。而這,正是照顧者與親人應該共同追求的目標。


Katherine Ponte 正在康復中,與重度躁鬱症(第一型)共處,並過著幸福生活。她是 ForLikeMinds 心理健康同儕支持社群的創辦人,亦創立了 BipolarThriving: Recovery Coaching 與 Psych Ward Greeting Cards。Katherine 同時是耶魯大學復元與社區健康計畫的教學人員,並著有《ForLikeMinds: Mental Illness Recovery Insights》。

Izzy Goncalves 從事金融業,是 Katherine 的主要照顧者,在她創立多個心理健康康復倡議上發揮了關鍵作用。


Written by: Katherine Ponte and Izzy Goncalves

Original Source here: https://www.nami.org/family-member-caregivers/advice-for-mental-illness-caregivers/

November 10 2021


I have serious mental illness. As a result, mental illness has become a part of my partner and caregiver Izzy’s life as well. He and I have both learned a lot in our challenging 18-year journey to recovery. We’d like to share several lessons that have helped us to navigate recovery.


Meet Your Loved One Where They Are

Helping a loved one with mental illness often begins by identifying where they are in the five stages of change and advice for what you can do accordingly:

  1. Precontemplation (not interested in help): Demonstrate empathy and avoid judgment.
  2. Contemplation (recognizes problem but isn’t ready to change): Recognize that change is hard and consider pros and cons of treatment.
  3. Preparation (states commitment to change): Try to help your loved one define goals. Goals should be specific, measurable, achievable, reasonable and timely.
  4. Behavior change (starts to change/become actively involved in treatment): Reinforce your loved one’s positive behavior.
  5. Maintenance (sustaining change): Offer your continuing support.

It’s important to listen for “change talk” and act on it by providing support, comfort and encouragement at each stage. Patience is also required (although loved one should feel empowered to use their best judgment in times of an emergency). Pressuring someone to move forward in their journey may cause them to resist, which may delay treatment.


Listen in Order to Communicate

Starting the conversation with your loved one can be critical to helping them get the help they need. The caregiver may need to take the first step to start the discussion, and the best way to do so is to demonstrate genuine interest in your loved one’s concerns.

Don’t tell them how you can help — ask if you can help and how. Respect their desire not to talk about the situation. “I need to talk to you” is rarely a good way to start a conversation. When they don’t want to talk, the better approach is to keep gently reminding them that you are there for them if they want to speak.



Highly effective tools for improving communication include:

  • Motivational interviewing: This technique seeks to tap into one’s own personal motivation for change, which may include achieving specific life goals.
  • OARS: This method provides a framework for practicing motivational interviewing. This acronym stands for opened-ended questions, affirmation, reflection and summarizing.
  • Active listening: This form of engaging involves listening to what a person says and then reflecting what was said in a way that demonstrates understanding. It also serves as a mirror, nudging a person to see and confront their thoughts, ideas and impressions.


Show Compassion for Past Mistakes

It is important to always convey empathy and compassion when speaking with your loved one. This includes talking about the past. Many people with mental illness are aware of some of the inappropriate things they did when ill. In fact, they may often obsess over their regrets and mistakes.

It may be best not to raise these incidents if you see that your loved one is actively trying to improve their behavior. Mentioning them may make it harder to move forward in their recovery — they can’t change the past. It can be helpful to instead focus on the present moment and future goals.


Encourage Self-Empowerment

Mental illness may make a person feel as if they have no say or control over their life. Often, they may allow their caregiver to take control of their treatment because of their difficulty accepting the diagnosis or out of ambivalence. However, self-empowerment is key to recovery.

It’s important to ask open-ended questions to explore what your loved one wants and to help them take ownership of their mental illness and treatment. When a caregiver respects and trusts their loved one’s decisions, this can feel liberating and improve the relationship.

Treatment approaches can also be self-empowering. A shared decision-making approach can be very effective. With this approach, a patient makes clear to their doctor what their priorities are, and together they agree on a treatment plan. An approach designed to help patients pursue life goals, rather than merely addressing symptoms and side effects, can be extremely motivating.


Practice Positive Reinforcement

Caregivers should strive to recognize and praise all accomplishments. When your loved one it severely depressed, getting up from bed, taking a shower or eating can be extremely difficult for them. Doing any of these is an accomplishment. Don’t mistake a depressed person’s inactivity as laziness.

Recovery is often a series of small accomplishments. Small accomplishments can build into big strides, such as getting a job or getting your own home. Encourage your loved one to dream and pursue goals and help them along the way with practical and realistic advice.


Avoid Helicoptering

Helicoptering is a form of a caregiver’s over-involvement in their loved one’s care. Plainly stated, a person feels under constant surveillance as a caregiver “hovers” around them, constantly on high alert for an episode or other adverse event. To a person with mental illness, this over-involvement and anticipation of the worst-case scenario can feel suffocating, disempowering, discouraging and even enraging. Despite a caregiver’s good intentions, helicoptering can lead a person to withdraw and isolate.

A common instance of helicoptering is when a caregiver repeatedly insists on contacting their loved one’s psychiatrist, leading the patient to feel like they’re being “snitched on.” This fear may be based on the control a psychiatrist has on their treatment, such as the ability to make a medication change. A person may also feel that a psychiatrist will give deference to the caregiver rather than the “sick” patient. All of this may lead to a significant and harmful erosion of trust between the person and their caregiver — as well as the patient and their provider.

Many caregivers do not realize the serious consequences of this sort of helicoptering. For example, their loved one with mental illness can revoke or put limits on the permission their psychiatrist has to speak with caregivers in the future.


Access Peer Insights

Peers can support, inform and inspire each other’s recovery journey. In fact, people with mental illness are often more comfortable speaking to peers than clinicians. Peers have insights that clinicians without lived experience cannot offer; moreover, peers in recovery can offer invaluable hope to both supports and people living with mental illness.

Understanding is critical to a good relationship between a person with mental illness and their caregiver. While mental illness is very often a family effort, it cannot be overemphasized that a person’s responsibility, ownership and self-empowerment will enhance outcomes. When a person is provided more control over their treatment process, they are more likely to reach recovery. Ultimately, that’s what caregivers and their loved ones should be striving for, together.


Katherine Ponte is happily living in recovery from severe bipolar I disorder. She’s the Founder of ForLikeMinds’ mental illness peer support community, BipolarThriving: Recovery Coaching and Psych Ward Greeting Cards. Katherine is also a faculty member of the Yale University Program for Recovery and Community Health and has authored ForLikeMinds: Mental Illness Recovery Insights.

Izzy Goncalves works in finance and has been the primary caregiver of his spouse, Katherine. He has been instrumental in helping her develop a number of mental illness recovery initiatives.


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