I'm a Hospice Patient... Now What?

Once you have been admitted to a hospice care program, be it in a personal residence or assisted living facility or the like, things will change.  Here compiled are some changes to expect.

  • The terminal diagnosis will be talked about.  A lot.  Sometimes you will feel that it is the only thing you talk and think about.
  • You will be sad/angry/upset/numb.  The gamut of emotions is expected and normal. 
  • Your family will become very involved in your life. /Or, your family will not become involved your life. / Or in between. You may be surprised by your family response: some families rush to the bedside for final moments while others are not comfortable with the dying process and push away.  These are all normal responses, It is important to clearly explain your expectations as the patient and to lay no blame.
  • You will likely have a caregiver that will be assisting with your daily life. You may not be able to care for yourself as well you might have been able to before.  Your meals, your laundry, your cleaning, even your bathing and clothes changing might fall under the scope of someone other than you, or even someone other than your spouse or child or friend.  It may be a hired caregiver that comes into your living quarters and provides care to and for you. 
  • Your relationship with your family and loved ones will change.  They will still be your spouse, parent, child, or friend, but they may also be your caregiver.  As the disease progresses, you will need them to care for you in ways you may not have expected, like seeing you cry, hearing you talk about past memories, administering medication, even bathing you, spoon-feeding you, or changing your incontinence care items.  You may not be available for them to rely on you as they once did.  You may have been the one they tasked with simple household items, like taking out the trash or doing laundry or the shopping, or being the person who provided an income, the person they laughed with and planned for the future with.   It is important to be honest with yourself and your loved one as much as possible while also being cognizant, sensitive, and respectful of their perspective.
  • The hospice care team will be visiting you. A lot,  With Saint Verena, the care team will visit you, the patient, frequently.  Preliminary assessments are conducted within five (5) days of admittance, and weekly visits begin immediately.  You will need to communicate with the hospice care team about what days and times are optimal for your care.  You or a person reliable and knowledgeable of your condition must be available to talk with the hospice care team for up to two hours or more  per visit.
  • Durable Medical Equipment (DME) will be delivered, as needed. Room for a hospital bed, suction machines, nebulizers, wheelchairs, and other equipment will likely be needed as the decline progresses.
  • Medications will be delivered as needed.  Having a safe, secure, accessible place for the medications to be stored is needed. Also, having adequate lighting and vision care items (like reading glasses or a magnifying glass) are necessarily to ensure proper dosage and administration.