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I have a life limiting illness.

What are my next steps?

In an ideal world you might not have a life-limiting illness. Unfortunately, we don’t live in an ideal world, but that doesn’t mean you can’t keep living life to the fullest. 

 

If you just received your diagnosis you may be feeling overwhelmed. There might be shock, grief, sadness, or even a numbness. Finding your own way of coping is important as you walk through these difficult emotions. Just remember that you are not alone.

 

It’s normal to feel rushed and anxious at this point because you may have unfinished business you feel you need to take care of. Throughout our lives we plan for every other life event - graduations, confirmations, weddings, retirements and more. However, all too often we do nothing to plan for the end of our lives, other than making a last will and testament to deal with our worldly possessions after we are gone. If the only thing you have done is prepare your Will, the tasks to prepare for end-of-life may feel overwhelming. 

 

An End of Life Doula may be able to help with this work. At Huron Shores Hospice we have four trained End of Life Doulas who are available to help you get organized in your end-of-life planning. Doulas can come in to help after a life-limiting diagnosis and help figure out what is really important to you. A doula will help you express your fears and talk about the obstacles you are facing. A doula can help you work through your regrets, unfinished business, guilt or shame. A doula’s role is to actively and intently listen to you to explore the meaning of your life and meaningfully discuss death. A doula knows this is an emotional time, and how important it is to acknowledge these feelings. 

 

Having a creative outlet and sharing memories with your loved ones can also be very helpful. Doulas can also help you create legacy projects that can be left for loved ones to help them stay connected to you after you are gone. Writing down your life story and recording your memories can be a wonderful gift to leave behind for your family. 

 

Your family doctor can help connect you with organizations in the community who will help support you through your illness.

Steps you may want to consider:

  • Write or update your Will.

  • Prepare Powers of Attorney for Property and Personal Care.

  • Organize your financial information. 

  • Review your insurance.

  • Make a list of all your passwords so someone can manage your online presence after you are gone.

  • Pre-plan your funeral or memorial service.

  • Empower yourself with knowledge

    • Try to understand how your illness will affect you.

    • Ask your doctor what kind of physical, mental, or emotional changes you should expect as your illness progresses.

    • Ask your doctor about available community services that can support you and your family.

  • Reach out to people you love, old friends and family.

  • Talk to someone about your regrets, guilt or shame.

  • Think about mending relationships.

  • Try writing letters or calling the people in your life you care about.

  • Find a support group for you and your caregivers.

  • Plan to do something positive each day.

  • Schedule activities that you can look forward to.

 

Most importantly, think about what really matters to you. How do you want to live out the time you have remaining? What does good care look like to you? How do you want to be supported and by whom? 

 

When being home is no longer possible or when you make the decision that residential hospice is where you would like to be, Huron Shores Hospice is here for you. Our residential hospice provides a home-like setting where adults and children with life-limiting illnesses receive end-of-life care. Huron Shores Hospice empowers individuals to live well to the end of life by providing compassionate, dignified and holistic care, while supporting their family members and friends. 

Medical and Comfort Care

Working with your healthcare team, our Medical Director will determine when your admission to HSH will occur. To prepare for your stay, one of our compassionate hospice team members will contact you to answer any questions and gather some information about you and your personal preferences.

 

While living at Huron Shores Hospice, you will be provided nursing care from the staff at Tiverton Park Manor with a nurse on-call 24 hours a day. Our Medical Director will provide care and medical oversight in concert with your family physician to ensure pain relief and symptom management. Trained volunteers will be available for comfort care and to assist you and family during your stay.

Home Away from Home

At Huron Shores Hospice, we strive to make our residential hospice feel like a home away from home. We understand that normalcy is so important in end-of-life. Decorated in soft, neutral tones with décor pieces donated by local artisans, the room has a truly community feel. We encourage residents to bring personal mementoes along to remind them of significant pieces of their family home. The two-room suite allows for both nursing care and comfort for each resident as well as a room for friends and family to be present during their stay. 

 

For sleeping arrangements, a fully adjustable electric hospital bed with optional low-flow mattress provides comfort and security for our residents.  A comfortable bed in a private area welcomes our resident’s loved ones to take a rest or get a peaceful night’s sleep. The suite offers two televisions, with cable and on demand movies. An area welcoming younger family members is set up with children's books, games, chalkboard and a child-sized table with chairs. To allow families to make themselves at home, the suite's kitchenette is stocked with coffee, tea, pantry items and small appliances. Meals are provided by the Manor for our resident and one guest; additional meals for further guests are prepared upon request, so that family and friends have the option to stay close to visit.

What to bring with you:

  • Favorite pillow or blanket

  • Clothes, including non-slip footwear, that you are comfortable wearing and pajamas or nightgowns

  • Wheelchair, walker or cane if you are using them at home

  • Power of Attorney (POA) information

  • Medications

  • Incontinence products

  • Pictures, artwork or small personal items to display