When a Call to Hospice Is a Gift to the Caregiver

Last updated: March 25, 2010

There's no way to sugar coat how hard it is waiting for someone we love to die. The last stages of life, when a person we love is slowly slipping away from us, are as close to unbearable as an experience can be. They're also exhausting; it's a huge job to take care of someone at any time, but watching someone we love grapple with pain and grow weaker with every passing day takes a special kind of toll.

Reading a moving thread on this topic in the Caring.com community, I was reminded again of the many times Caring.com members have praised hospice services. And the many times I've heard people say (or said myself) that once they experienced the relief of having help from hospice, they wished they'd asked for hospice help much sooner.

Give Yourself the Gift of Hospice Help

Recently I saw a Brown University study that said that one in ten hospice patients is referred too late, with not enough time left to provide the services that hospice could have offered. It seems, the experts said, that the majority of people aren't getting clear instruction on when to call in hospice. It made me sad, because I'm among those that this happened to. So I thought I'd talk honestly about hospice, and what a gift to the caregiver calling hospice can be.

When my Dad was at the end of his battle with esophageal cancer, my stepmother, my sisters, and I talked about hospice a couple of times, but we didn't make the call. I think we just couldn't believe everything was happening so fast -- we couldn't grasp the finality of it. It felt like defeat; like we'd given up fighting to hold on to him. And the doctors, despite having given my dad a "terminal diagnosis," didn't actively refer us to hospice; I guess they were waiting for us to ask.

It wasn't until Daddy was no longer speaking, and we felt complete panic about what to do, that we made the call. When the hospice nurses arrived with their arsenal of pain medications and other powerful treatments, they sat us down and told us they thought my dad had just days left. Then, gently and with great insight, they offered some thoughts about what the last days would bring. It was terribly painful, and we all wept.

But I also remember the wave of relief that swept over us. Suddenly here was someone who understood, who knew what has happening, who could tell us what to expect. Who, when Daddy groaned and cried out in his sleep, could give him something to help him rest easier.

There was one thing my Dad was doing that particularly worried us. He would suddenly open his eyes and start talking or calling out, looking off into the distance. Sitting next to him when that happened was frightening. Was he seeing things? Was the cancer in his brain, making him crazy? Was he frightened about what was happening to him?

Kindly, the hospice nurses told us that this behavior was common at the end of life -- they'd seen it many, many times. While no one could know exactly what was in Daddy's mind, they said, it was likely he was getting ready to go, possibly even greeting those he'd said goodbye to in his own life. Sometimes, they said, in a person's last days, those who'd gone before suddenly became very real for them.

Of course, we'll never know about something like this until it's our turn. But I know I felt much better and more at ease. Having someone to ask questions of, someone to call on when in doubt made those last days of caregiving a completely different experience. Freed from complete responsibility for every decision, we could focus on making Daddy comfortable and saying our own goodbyes.

That was the ultimate gift. One I hope you can give yourself.

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4 Comments So Far. Add Your Wisdom.

Anonymous said over 1 year ago

Hello My Name Is GypsyRoseNight, My Brother Was Diagnosed With Squamous Carcinoma Cancer, He Was Given Three Months To Live A Month ago Or More... He Refuses The Hospital And Hospice.. Last Time He Weighed was on the 14th On June and he weighed 127 Pounds!! he eats like a bird.. and Drinks Not Even 8 Oz Of Water a day, A Relative Says He Eats A meal once a day but that watermelon or what he can get him to eat other wise if he don't like it or want it he wont eat.. but telling people he is.. and drinking 12 oz of water a day and He Isn't!! This Relative wants to do it because they are related and so am i a sister... But i know he should be in a hospital or have hospice and he saus i dont want them in my house!!... Well its getting harder on them and i cant say it all because i dont want any trouble... he is sometimes in his right mind when he isn't is when he wakes from a deep sleep and dreaming and comes out of it.. and we have to call his name.. to bring him to reality. other times he talks non-since and other times lucid i am very worried about him!!

Anonymous said about 3 years ago

Hospice care if the west was forced upon us by the hospital. Neither I or the patient wanted it. They totally disregarded the patient's wishes on pain control. the some if the nurses were rude and arrogant. the patient was alert, was quickly drugged to a stupor with a dose higher then was ordered. Pt out for day and 1/2. came out if it demanding not to be given pain medicine. They denied her further care. Her care needs were physical. Jr was like pulling teeth to get wound care supplies. They returned only to drugged the patient to death. I wish I had never had then step foot in the house.

over 3 years ago

to Anonymous: thank you for your sense of humor! I can sure use it now, as I am, one of those 24/7 spousal caregivers. My husband of almost 57 years has COPD and it is in last stage now. The doctors have said that, but 2 years ago! It is a very slow, excruciating disease because, as American Lung Assoc. says "If you can't breathe, nothing else matters!" I have been inquiring into Hospice and have encouraging reports, but my husband is a fighter. He will not ever want to agree to it, until he is nearly gone. I hope this doesn't sound like I am trying to rush things (no one can anyway). I love him dearly and have a dread of what is ahead. But I don't want him to suffer more, and Hospice might be able to help.

Anonymous said over 4 years ago

Interesting! I'd spent years with my late husband's failing heart and prostate cancer and all of the resulting symptoms, appointments and adaptation in foods, use of time, etc. I also needed to take care of myself.....but, that's hard for a life-long "take care of" person who has already gotten on the "treadmill" of spousal care 24/7. By the time I knew I needed self-care it was too late. And,by the time we got my late husband into hospice he had less than 3 weeks to live. We [primary care physician and I] knew he needed that type of care but he was still mentally "in charge of his own ship" [decision-making] and felt it wasn't yet time. We'd paid into long-term care insurance for years and didn't even get to use it! One of the grief work books I've read since his death quoted a young widow who said (this is paraphrased, since I don't have the book here to check exact wording) "If/whem I remarry, I'm going to have a clause in a pre-nup saying that I get to die first!" How I can relate to that! But I'll go one better: I have no intention of remarrying! I only marry every 30 years, and I figure that there are 6 years left on this marriage. Even without my partner being alive I'll use those years to heal and move on! Surely, by the age of 83 I'll know better than to take on another! My late brother's widow notes "By that age most men are looking for a nurse or a purse" and I'm not going to risk either!!

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