The “H” word… HOSPICE.
It seems like everyone has a different idea of what “hospice” is – some ideas are accurate and some are misconceptions. Maybe it’s because hospice options can vary by disease, by age and by cultural beliefs.
Just as I thought dementia and Alzheimer’s was only about memory before my family was personally impacted, I didn’t understand hospice until I was in the world of dementia either. Like many of my friends, I thought it was something that happened at the very end – in the last days or maybe weeks of someone’s life. Until 3 years ago I didn’t realize that hospice could provide much-needed support before end of life was imminent.
I’ve watched a few families go through the end stages of dementia with their loved ones and have seen the hospice experience from afar. Some have been good, others haven’t made the journey as easy as it could have been.
My dad has been evaluated a few times to see if he qualified for hospice care and until April 21, 2016, he didn’t. But then… he did. We are now entering a whole new chapter of our journey – with a new safety net of support.
It’s taken me a while to really wrap my head around it. (And I’ve given myself the time.) I’ve slowly started calling people close to me to let them know what is going on. Talking about it has helped and it’s been interesting to hear the questions that have come up.
The most common question is, “What happened?” The answer isn’t what people expect (and it was a little hard to come up with an answer at first) “A rash.” It all started with a rash…
I was at my mom’s one day and she asked me to look at the small rash on the top of my dad’s back. When I lifted his shirt I discovered his entire back was covered, this was no small thing. My mom and I looked at each other, unsure what to do.
I did what anyone who always has an iPhone at the ready would do – I took pictures. Then I texted them to my brother and sister-in-law – they are paramedics so they have the most medical training in the family. They forwarded to others. We looked online.
If you ever try to diagnose a rash yourself, good luck. There were at least 50 things it could be. So we started small – hydrocortisone cream. Stop the itch and watch it.
The next day, it had spread to his chest. Again, my mom and I looked at each other at a loss. The last time we tried to get my dad in a car it was a 45 minute long futile effort. He was scared and went stiff. Nothing we could do would coax him in. So we weren’t sure how we would get him to the doctor’s if it continued to get worse.
Technology! My mom emailed the doctor through the online system and was able to include photos of the rash. She also gave the doctor an update about my dad and asked if he might be evaluated for hospice. The doctor agreed and on 4/21 – the hospice nurse arrived.
If you’ve seen photos of my dad on social media, you might be asking yourself why he qualified for hospice too. Sometimes he just looks like a rather thin older man. But when you get the full picture, it makes sense.
My dad can’t get in or out of bed without assistance. He can’t bathe himself, use the toilet, brush his teeth or hair. He has lost a lot of weight and his skin is hanging on his prominent bones. He is forgetting to swallow and keeping food and liquids in his mouth for long periods of time. (A common symptom of the progression of dementia.) When he does swallow, he is beginning to cough more – which means food or liquid are getting into his windpipe because his throat isn’t always working the way it should be. (Another common symptom.) He sleeps 16-18 hours a day. He rarely speaks.
You can’t judge my dad by some of his photos.
Intellectually, I know it’s time and I am thankful for the help. For the safety net. For the peace of mind for all of us.
But emotionally – it was still hard. As I listened to the nurse explain what “end of life will look like” and evaluate my dad, I went numb. Was this really happening? How would this journey look?
I don’t know how much time we have left.
I do know that my dad wouldn’t want to live indefinitely like this or for this to be our experience of him. I’m at peace with the fact that he’s dying (I said it! The D word!).
I know that it will be hard, and emotional and raw but I know that my whole family will be ok. I know that we have done our very best for him, and for ourselves, through this journey.
I’m going to keep showing up. Loving him where he is each day. Helping to make his life easier in any way that I can. I’m going to do the same for my mom, who’s heart is breaking but who is doing an amazing job caring for him.
I’m going to be there for my family as we all go through our personal experiences with this journey. And I’m going to be there for myself – to give myself permission to feel my feelings, to take time for myself and take care of myself too.
I’m also on a mission to help others on this journey. To show them a new path – a way to navigate the journey with as much ease and joy as possible.
I decided to record my thoughts so I would remember them and so I could share my journey in the hopes that it might help someone else. Everyone reacts differently, recovers differently, my experience of that day was different than my mom’s even though we sat next to each other at the table. Here is a glimpse into the day of and two days after my dad went on hospice. After the video is some basic information about what hospice is and how it works.
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So what IS hospice?
Hospice care is designed to provide quality, compassionate care for people facing a life-limiting illness. It is for the end-stages (usually when a person is considered to be within 6 months of death). Hospice is the choice to stop traditional treatments and procedures designed to prolong life and instead, opt for palliative care – or comfort measures.
Central to hospice is the belief that each of us has the right to die pain-free and with dignity, and hospice gives families the necessary support to allow us to do so.
Hospice involves a team that includes doctors, nurses, a social worker, a chaplain or someone to provide spiritual and emotional support. There is 24-hour on-call support – if something happens, someone is there to help. Each hospice company may be a little different as far as the team and the specific services they provide so be sure to interview them and ask questions before making a choice.
WHERE does hospice care take place?
Hospice care can be provided wherever the person in need is. There are hospice facilities, hospice can provide support to people in assisted living, memory care or other care home. Hospice can also be provided for people who are living in their own home.
Who pays for hospice care?
If the person in need of hospice is covered by by Medicare or Medicaid, they would choose to change from their traditional medical coverage to hospice and it is usually covered 100%. Most insurance companies also have hospice options but be sure to talk to your doctor and fully understand what is covered before making decisions.
H is for “Hospice” and H is for “Help”
If you have a loved one with dementia or Alzheimer’s, don’t be afraid of hospice. It’s not giving up, it’s choosing to make the end of the journey as peaceful and pain free as possible for everyone involved. Learn more about it before you need it. Take advantage of all the help they have to offer when it’s time. It’s hard enough, you deserve all the support that is offered and more.
– Tara Reed
Tara, Thank you for writing about the experiences you are going through with your Dad. Reading your blog brought tears to my eyes. I will keep you and your family in my prayers.
Thank you Franchelle – brought tears to write too, as you can imagine!
Tara, your courage to not only be going through this journey but also to be identifying that other people on this same journey need help and hope is incredible. And you ARE delivering help and hope!
Thank you Maritza! 🙂