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Expert Blog

Hospice Care

May 31, 2016

Several months before Jim passed away hospice was recommended. I wasn’t really familiar with exactly what hospice entailed, but I knew it was for when someone was pretty close to the end. It was a little scary. I told my friends and I could tell by the look on their faces, the sympathy, the sadness for me, that they also knew about what I did in regards to hospice. It meant the end was near.

I asked for a few recommendations and found a hospice company that seemed pretty good. Pretty good as far as I could tell by my own limited knowledge of what I was about to delve into. Pretty good for helping a family in a sacred time. A time that is delicate and new territory. Pretty good for dealing with death and scary topics and subjects that have dire consequences.

I had read about hospice a little in a book that changed my caregiving views for Jim and helped me become a better partner for him during his last year: Being Mortal by Atul Gawande. I highly recommend this book. It is a game changer.

Meeting with hospice and having them become part of our care for Jim was one of the best decisions I made.

You don’t just get one person. You get a team. There is a nurse, a doctor, a counselor, a social worker, a pastor, a go-to person about anything I had questions, concerns or needed guidance with. Not just for Jim. For me. For the kids. For after he was gone. Anytime of day. Anytime of night. If they didn’t hear from me, they were texting or calling me. They gave both kids birthday gifts. They sent me flowers from Jim for my birthday. They hugged me and held me up during the absolute most difficult time I have ever faced in my life.

There was never any pressure to do one particular type of care or another. Options were presented, but thankfully Jim and I had had enough conversations so I knew what his wishes were. That was probably the easiest part of the whole ordeal. I knew he didn’t want extraordinary measures. I knew he wanted to end his suffering, and ours. But it was still hard to let him go. Hospice does this for a living. They know what is coming when you don’t. They can help prepare you and help you when you are shocked and falling. They can answer questions, sometimes questions you don’t realize you even have. They are kind, caring and just so supportive on different levels.

There were some issues with Jim’s care at his facility. My hospice team organized meetings and followed up with my concerns, eliminating some of the stress I had been under. They made sure he was clean. They provided medicine and needed supplies. They guided me with patience and never seemed to tire of my inquiries or my indecisions. The hospice team not only helped me live through losing Jim, they helped me survive. They made suggestions I would have never considered. They enveloped our family with sincere and heartfelt care and love.

I know hospice is a scary word. I know there is a lot of misinformation. But if you are struggling with an end of life or potential end of life situation, all it is is a phone call. Then a meeting. If you choose not to move forward with them, then don’t. But if you do, the potential rewards could be your saving grace. You might just want to give them a try.

Thoughts and stories from others

  1. June 16, 2016 at 12:36 pm
    Posted by shirley swires

    My husband just passsedon may 8th he had Alzheimer's and vascular falsification and melanoma we dealt with the dementia for 8 years and it really got bad before hospice came in. He wouldn't sleep he was aggressive and would go to the bathroom on the floor.with their help we got him on the best meds for him ,I got to keep him at home and he passed on mothers day. He was in akot of pain but hospice helped with pain meds ,I'm glad he got to die at home dementia sucks and it changes the people we love ,and its hard sometimes to remember who they used to be .
  2. May 31, 2016 at 09:54 pm
    Posted by Ann

    Karen -thank you for sharing your experience. Hospice was a god send for us as well. They really do care for the entire family... I'll be forever grateful for their love and support when I needed it the most. Thinking of you, Ann
  3. May 31, 2016 at 06:57 pm
    Posted by Gayle

    Karen. Again thx so much for sharing so we all have an idea of what to expect. I too hope this summer brings peace to you and the children
  4. May 31, 2016 at 05:26 pm
    Posted by Glenda Miller

    Beautifully said, Karen. I have volunteered with a hospice and I worked for one in Newport News. We had hospice care for my parents and my in-laws. It is the most wonderful group of people I've ever been a part of. . .I can't say enough good things about them. For Marilyn Brewer, I'd say look around for another one. It is covered by Medicare so there should be one. Our prayers continue for you and the kids, Karen. Hope this summer will be a special time of healing and wholeness for all of you.
  5. May 31, 2016 at 02:03 pm
    Posted by Marilyn Brewer

    Hospice care where I live does not include those with dementia or Alzheimer. When the end is near I have to put him in the hospital in palliative care if he is not in a nursing home.

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