Bereavement Support Resources

If after losing your loved one you are now living alone and experience a medical emergency, first responders and emergency departments must know your health conditions and have access to your medical information.

It is suggested that you put together the following documents:

• A comprehensive piece of paper that lists contact information, emergency contact and any necessary details about your health.
• A copy of your advance care directives, such as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) or a DNR/DNI (Do Not Resuscitate or Intubate).
• A copy of your medical power of attorney form, so the persons you have designated can make medical decisions for you if you are unable to do so for yourself.
• Copies of additional critical medical information if you have them, such as recent test results.
• A copy of your Medicare and/or medical insurance cards.

Because you never know when your medical information may be required, it is suggested you make several copies and put them in envelopes labeled ‘Medical Information.’ Then place them in locations such as these:

• On your refrigerator so it can be easily found by first responders
• In the glove compartment of your car
• In your carry-on luggage when traveling
• In your purse or wallet

• Smart Patients Communities – “Loss of a Partner” and “Loss of a Parent” subgroups
• Grief Share – find local grief support groups by ZIP code
• Virtual Hospice  – grief support and information
• Grief.com – grief support and information
• Grief Therapist Locator – grief therapist locator

It can be hard to know how to support someone who has just experienced the loss of their loved one from PSP, CBD or MSA. They have already experienced so much loss as their loved one's disease progressed, and they may be experiencing complex and conflicting emotions. 

• Send a sympathy card
• Make a meal or offer 
• Send them the "Life After Loss: Navigating the Journey of Grief” resource
• Attend the funeral service
• Make a donation in honor of their loved one
• Stay connected by meet with them for coffee, calling them or sending a text 
• Encourage participation in CurePSP online bereavement support group
• Encourage participation on Smart Patients forum conversations or the CurePSP Facebook Discussion Page
• When they are ready, assist them with donating their no-longer-needed equipment and supplies
• Be available to listen

• Find someone to talk with. This can be a friend, a religious leader, therapist or support group. Choose someone who is a good listener and will give you the opportunity to express how you’re feeling about the death of your loved one.
• Ask for help. If there are specific ways that others can support you, let them know. You might be surprised at how willing people are to help, they just don't know where to start. 
• Allow your grief to happen at its own pace. The nature of grief is unpredictable and will not happen in any specific order. It is entirely typical to move between good and bad feelings.
• Feel your feelings instead of avoiding them. Feelings of sadness, anger, and depression are normal and should be honored. Many people make the mistake of busying themselves in their jobs, families, or educational pursuits as a means of “stuffing” their emotions. Others go to great lengths to avoid tears so that they may appear “strong” to their friends or loved ones. Although such approaches may appear to give temporary relief, they often lead to unintended consequences such as prolonged depression or various physical ailments. It’s been said that grief is like passing through a dark tunnel. You can’t go over or under it, nor can you go around. A grief support group can be a good place to feel your feelings as you talk about the death of your loved one and what your relationship with them meant to you.
• As much as possible, continue to maintain a normal schedule. Set the alarm clock so that you get out of bed by a certain time. Attend to your personal needs such as eating healthy meals, taking a shower, getting dressed, and getting out of the house at least once a day.
• Treat yourself. Try and think of things you like doing, such as going out to a movie or to dinner. If possible, call a friend for companionship. Avoid the natural tendency to isolate yourself.
• Give yourself time. The grief work you’re doing is important, and you need not be on anyone’s time table but your own. Remember, this pain won’t last forever.
• Allow yourself to be cared for, even if it may feel uneasy or awkward.