Caregiving

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 LIVING WITH A PARTNER WITH DEPRESSION OR BIPOLAR DISORDER

 

The recent suicide of Robin Williams awakened many of us to the toll depression or bipolar disorder takes not only on the afflicted person, but also on those of us who love and live with the person with a mood disorder. As the tragedy of Robin Williams illustrates, there is no such thing as being “just” depressed. Depression and other mood disorders are serious illnesses, and mental illness should be treated as seriously as physical illness. Partners of mentally ill loved ones are often thrust into the role of caregiver, and self-care is paramount.

Here are some tips for caring of yourself while caring for someone with depression, bipolar disorder or other mood disorders.

1. Set healthy boundaries. It is tempting to forget your own needs when living with someone with a mood disorder. Remember that you need to take care of yourself. If you do not, you will become resentful and may suffer burn out and your own depression.

2. Do not isolate yourself. A person with a mood disorder is likely to isolate him or herself. This is a primary symptom of the disorder. It is also often a result of the shame or guilt the depressed person feels. Make sure to maintain your friendships, work life and the activities that give you satisfaction.

3. Learn about the disorder. This will help you understand your partner and give you tools for caring about yourself while caring for your loved one. If he or she suffers from bipolar disorder, learn not to say “he is bipolar.” He or she is not their illness, but someone with an illness. Learning about the disorder will also help you to….

4. Don’t take it personally. A symptom of many mood disorders is irritability and uncontrolled anger. Do not take it personally, as hard as that may seem when your loved one is lashing out and directing his or her anger toward you. Do not argue or defend yourself at those times – it is like trying to be rational with a baby having a temper tantrum. Arguing and expressing your anger at these times will only escalate the situation. If the anger is overly hurtful, disengage, and walk away, as unemotionally as you can, while not suppressing your own feelings. You can say “I know you are hurting right now, but you are also hurting me. We’ll talk after you feel a little better.”

5. Determine if the anger is abusive, and weigh honestly whether to stay or leave. Only you know if the personal attacks are overly abusive and if they outweigh the love and good in the relationship. If you are in danger physically or emotionally, it will likely be best for you to leave the relationship. Abuse is never acceptable. Determine if the angry outbursts and behaviors are simply that or if they cross the line into abuse. If it is only occasional emotional attacks, that may be acceptable, but only you can judge how much it is affecting you and your life.

6. Take care of your own feelings and health. It is important to preserve your own health, both physical and mental, when you are living with a person with mental illness. You need to express your feelings, or you will become depressed yourself. Allow yourself a good cry, take a walk, hit a pillow or stamp your feet to get the feelings out. It is best not to do this in front of your loved one, as this may result in further guilt, shame and depression for him or her. Talk to a trusted friend. Get professional counseling for yourself. Get a massage. Exercise. Stay connected to your spiritual community.

7. Do not try to “cure” or “fix” your loved one. He or she may hope, whether consciously or unconsciously, that you will be a savior/rescuer and cure the illness. Remember that this is not your role or job. Remind your loved one of this gently and firmly, and suggest professional help. This is a big piece in setting a healthy boundary. Do not nag about that, as tempting as that may be.  Make suggestions once, avoiding the word” should.” He or she will hear you, and may just not be ready to take the necessary steps toward healing. Remember that only your loved one can choose to get the help he or she needs, and forcing him or her into therapy or into taking other steps will backfire if he or she is not ready to commit to the process.

8. Do not feel guilty about your loved one’s depression or other mood disorder. Remember that you are not responsible for it. Offer support, understanding and love, and again, don’t take it personally.

9. Do not make excuses for your loved one. Unfortunately, the negative symptoms of a mood disorder, such as undue anger, irritability and self-isolation, often spill over into other areas of your loved one’s and can affect your relationships with others. Let your loved one know that you will not make dishonest excuses, while assuring him or her that you will not divulge confidential information. If we all start saying “We would love to see you, but my partner is dealing with depression and is unable to go out tonight” we will begin to take away the stigma associated with mental illness. We have no problem excusing ourselves when we have a cold – why should it be any different with symptoms of a mental illness?

10. Be willing to engage in activities without your loved one. This goes hand in hand with not isolating yourself. If your loved one’s illness prevents him or her from keeping a social commitment, go yourself, especially if it is a commitment with a friend or community that nurtures you.

11. Have compassion for yourself, and acknowledge the good you are doing. Living with someone with a mental illness is a difficult challenge. Know that staying with your loved one and acting in the best interest of both yourself and your partner are acts of courage and compassion. Remember that you cannot have compassion for another unless you have compassion first and foremost for yourself.

 

 

 

 

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Caring for Tibetan Buddhists at the End of Life

Many people in the baby boomer generation, who were raised in the Jewish and Christian faiths, have turned to Tibetan Buddhism and other Eastern religions.  As this generation ages and enters hospice care, it will be important for health care providers to understand their unique needs at this sacred time in their lives.

Broadly speaking, Buddhist practice emphasizes a deep understanding of the mind, the importance of karma (cause and effect) and preparing for death.  For Buddhist practitioners, the moment of death is considered the most important moment of life.  Developing a calm and aware mind, acting virtuously for the benefit of other beings and abandoning harmful actions are the most important practices for preparing for death.  If the Buddhist practitioner is able to stay relatively aware at the time of death, he or she can be reborn in what is called a “Pure Land” and continue on the path toward enlightenment.

The most important practice for Tibetan Buddhists and those supporting them at the end of their lives is called “Phowa”, or transference of consciousness.  Phowa is aimed at assisting practitioners to be reborn in a Pure Land, where the cycle of suffering, or samsara, ceases.

An important concept in Tibetan Buddhism is the concept of the “bardo”, which means “in-between.”  Every moment can be considered a bardo, or a transition to the next moment.  In fact, our present life is a bardo between what came before and what will happen next.  The bardo between this life and the next is called the “bardo of becoming” and is traditionally considered to be forty-nine days. It is a time of self-review and purification of negative acts, in order to be reborn if not in a Pure Land, then at least as a human being who has the potential of attaining enlightenment. It is said to be a very vivid and at times intense and frightening experience, and the practitioner’s spiritual community, or sangha, traditionally practices at the end of each week to assist the deceased’s journey through the bardo. The dying process is seen as a separation of the mind from the body, and it is the mind that continues into the bardo between this life and the next.  Therefore it is important for the mind to be clear and calm at the time of death.  It is said that whatever thought one dies with is the one that will return most powerfully when one reawakens in the bardo. Traditionally, it is said that it takes 72 hours for the mind to completely separate from the body and begin the journey into the bardo between this life and the next.

As death nears, clinicians and others should refrain from touching the body, especially the feet, because doing so may direct the patient’s consciousness downward to rebirth in a lower realm, where he or she cannot benefit others and have the potential for enlightenment.  The patient may wish to be in the traditional posture of dying, lying on the right side in the posture of the “sleeping lion”, which is the posture in which Buddha died.

In developing a plan of care for Tibetan Buddhist practitioners, the hospice team and other caregivers need to consider the patient’s views on suffering, alertness and karma.  The following are some considerations in developing a plan of care for dying Tibetan Buddhist practitioners:

1.  Determine if the patient has a spiritual teacher (or guru) and the patient’s wishes for contact with the guru, and how to contact him or her.

2.  Determine if the patient has a community of fellow practitioners (the sangha), and if so, how to contact them.

3.  Provide a quiet space for sangha members to come and sit with the patient to meditate or do Phowa practice.

4.  Help the patient arrange an altar with pictures of the guru and other pictures that are important to the patient for his/her practice, as well as any meditation tapes, prayer beads, etc.

5.  Clarify issues and wishes regarding the use of pain medications.  Many practitioners may believe that the use of pain medications may unduly cloud their minds, but unrelieved physical pain may do the same.  As with all patients, this is a balancing act.

6.  For the social worker and bereavement coordinator, understand any family dynamics issues — there may be unfinished business or at least conflicting feelings if the patient was raised in a different faith.  The chaplain, in doing his/her spiritual assessment may want to do a “spiritual ecomap”, which is like a genogram, which is useful for families who practice multiple faiths.  This will be more and more important as the baby boomer generation continues to age.

7.   It is also important to facilitate discussions with family members about the patient’s wishes for end of life and at the time of death.  Educate family members on the need for a calm and peaceful environment, and let them know that if they are too outwardly emotional, they may be asked to leave the room.

8.  Clarify after-death wishes.  Does the patient want the body to stay untouched for 72 hours in order for the mind to separate and enter the bardo?   Sangha members and others may come to be with the body during that time to recite prayers and read from the Tibetan Book of the Dead. If on the other hand, the patient wants to donate his or her organs, that is totally acceptable, and most Buddhist teachers say it is a great way to generate good Karma. Cremation is traditional, but confirm wishes, and if they want to be cremated, and determine if they want a ceremony or viewing.

9.  Bereavement support may also need to be modified — grieving sangha members may not want bereavement support in the first 49 days after the death, so that they can turn inward to help their fellow sangha member’s journey in the bardo.  With respect to non-Buddhist family members, listen for and validate any feelings they may have in regard to their loved one’s Buddhist practice.

References

Smith-Stoner, M. (2006).  Phowa:  End of Life Ritual Prayers for Tibetan Buddhists. Journal of Hospice and Palliative Nursing, Vol. 8, No. 6.

Sogyal Rinpoche (1994). The Tibetan Book of Living and Dying. San Francisco:  Harper San Francisco.

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Treating Depression in the Elderly

Contrary to popular belief, depression is not a “normal” part of the aging process, but a treatable mental health condition. Symptoms of depression include feelings of worthlessness, hopelessness, helplessness, guilt, isolation and unrealistically negative beliefs about oneself. These feelings not only affect the depressed person, but also their family members, loved ones and caregivers.

Depression is unlikely to go away by itself, and the guidance of a professional counselor, in addition to a physician, is often warranted. In fact, psychotherapy has been found to very likely help the depressed senior live a happier, more fulfilling life and decrease the risk of suicide.

There are a number of things a loved one or caregiver can do to help alleviate a depressed senior’s depression. These include:

1. Make sure the depressed person sleeps and eats regularly.
2. Reinforce rewarding experiences and activities, including exercise.
3. Explore spiritual or religious beliefs as a source of personal comfort and support.
4. Allow the depressed person to tell his or her story, called “life review”, through techniques such as guided journaling, letter writing, autobiography or collage.

A counselor or psychotherapist trained in narrative therapy can be particularly helpful for helping seniors find meaning and a sense of integrity and ease their feelings of depression.  Narrative therapy is particularly helpful in helping depressed clients reconcile the inevitable losses incurred over a lifetime and find meaning in those losses in the context of their lives through the telling of the story of their lives. The role of the narrative therapist is to bear witness to the complexity and rich nuances of the evolving story and collaborate with the client in to make sense of his or her losses and find healing and growth through the process of reconciling those losses and acknowledging the contributions they have made in their lives.