Choosing Hospice - Is it the right choice?
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Making the final decision of hospice for your elderly loved one.
After a recent week in the hospital to clear pneumonia, during which I was relegated to sleeping on a pull out sofa, my wonderful Mom, my brothers and I made the choice of enrolling her in hospice for the best end-of-life care. For us, it was actually a relatively easy choice as my mom lives in my home and is cared for by me and my wonderful caregiver, Carina. We all wanted her to remain in my home. Not only will Mom be surrounded by those people she loves, but she'll be in a familiar environment and, we believe, she can be kept more comfortable with hospice care. And I, as the primary caregiver, will also get more support through hospice services as will be shown in details below.
But, before we made the decision, I had to explore what exactly hospice services offer and then had to explain the program to my mom, in minute detail. I'm hoping the information in this lens will educate you and help you and your loved ones make the right decision for your elderly parents, aunts, uncles, or, even yourself, when the time comes.
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Hospice services = comfort care
The primary idea of hospice services is to provide comfort care to your elderly loved one. This means that your love one will be as comfortable and pain-free as possible during the last phase of their life.When I started to care for my mom after my dad died (4.5 years ago), I was fully unprepared for what I was getting into. I have found though that I've developed into an intuitive caregiver. I adopted the mantra early on to "treat the symptoms and let the disease run its course." There have been times when I've butted heads against various doctors who wanted to perform procedures which would have been invasive and, imho, unnecessary for a 94 year old. I've sought out physicians and a wonderful dentist who share my philosophy and, so far, so good.
My innate philosophy and hospices' matched perfectly. Comfort care is what I was providing without even realizing it. I guess I was preparing myself and my Mom all along for comfort care when the time came. And, that's where we are today.
I want my mom to be as comfortable, safe and happy as she can be during these last days./weeks/months/years of her life. Hospice is the clear answer for my mom, myself, and my family.
What are the requirements for hospice care?
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1Estimated life expectancy of less than 6 months. Two doctors had to verify that my Mom's life expectancy is less than 6 months - her primary care physician and the head doctor of hospice. I contacted hospice services when Mom was in the hospital last week for pneumonia and appeared to be failing fairly quickly. The ER doctor gave us a 40% chance of survival but he didn't know my Mom. We did prepare for the worst but I had a feeling that the fighter in Mom wasn't done - and she wasn't. We did take the offer of hospice services though and had to accept that her life expectancy is less than 6 months.
Now, don't panic - just because hospice is offered to your family's love one doesn't mean they have an expiration date! By the very fact that my mom is 94, her life expectancy is less than 6 months but, with the right hospice and home care, I expect her to exceed that expectation. If she does exceed the 6 months, the doctors will just re-admit her for another 6 months, indefinitely. - 2A patient who has a terminal illness where cure is unlikely is a candidate for hospice services. If the patient improves, it may be found that hospice support is no longer needed. In this case, hospice care will be discontinued. In the future, if the patient again fails and again diagnosed with a terminal illness with no cure, re-enrollment into hospice will be offered.
- 3A patient who needs 24 hour monitoring or care is also eligible for hospice services. Along with a life expectancy of less than 6 months, this is the category where my Mom fits in - she requires my or a caregiver's care for moving around the house, to prepare her meals, to provide entertainment and conversation, or for general daily living tasks.
Some of my favorite photos of all time
She is still, at 94, a total delight. Click on any small picture to enlarge it.
Mom loves a good dessert shooter!
Some additional articles that may interest you
- Helping a hospitalized senior citizen
- For each of my Mom's hospital stays, I've chosen to remain with her, day and night. This article was a result of the latest 7 day hospitalization and contains helpful tips for caregivers of family of hospitalized elders.
- Causes of dementia in the elderly
- My Mom's mental status fell quickly a few months ago so I scurried to figure out what was going on.
- Pneumonia symptoms in the elderly
- Unlike younger folks, the elderly may not show overt symptoms of pneumonia. This article might help you identify pneumonia even without symptoms.
- Senior citizen dental care
- My Mom lost her first tooth last month at the ripe old age of 94.
- Resources for caregivers of aging parents
- This lens might point you in the right direction for some help if you're a caregiver.
- Good gifts for caregivers
- I thought this was an important addition to my library of senior citizen articles!
- Good gifts for senior citizens
- This one might help you find just the right gift for an aging person.
- Caring for the elderly - birdwatching from a lazy boy recliner
- I set up a window to the world for my Mom. Come along and see what her view is every day.
Understanding the personnel associated with hospice....
...and their roles in patient comfort care.
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A visiting nurse. The crux of your hospice team is the visiting nurse. Since comfort care is the core philosophy behind hospice, most patients will be seen by a nurse wherever the patient resides - your home, a nursing facility, an assisted living facility or an inpatient hospice facility. The goal is to treat the symptoms and keep the patient comfort in the last months of life.
Our hospice offers once a week nursing visits with the same nurse during which time my Mom's condition will be assessed, vital signs will be monitored, and her general condition noted. Nursing visits may be needed more than once a week and hospice will respond in kind. I find this type of support to be an incredible freeing feeling as it's no longer just me making health decisions.
Since Carina and I are with my mom on a daily basis, I feel that it's nice to have a third pair of trained eyes looking for signs and symptoms of illness that we might miss. This alone, for me, is a great reason to have hospice services. - A physician. Each hospice patient is assigned to a physician. If your loved one's primary care physician is associated with the hospice program, the change from primary care to hospice care will be seamless. The overseeing physician is available to the nurse who will fill them in on the patient's condition where they will direct future care to the wishes of the patient and family.
- A social worker. The social worker assigned to your senior citizen's case is an advocate for the family and caregiver. The social worker will visit the patient and the family periodically and may offer solutions to problems of which the family was unaware. Frequently, the social worker knows of community programs which may benefit the caregiver or family of hospice patients.
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Volunteers. The hospice program was, once upon a time, started as a volunteer organization and, even today, volunteers play a large role in hospice care. With advanced scheduling, trained hospice volunteers will come to wherever the patient resides to assist the caregiver by running errands, visiting the patients, or staying with the hospice patient so that the caregiver or family member can get out to run errands as needed.
As the primary caregiver for Mom, I sometimes am alone with her while our paid caregiver, Carina, is off. This means that I'm pretty much either tied to the house or, if it's a good day for Mom, I take her with me on errands. But, even on good days, I can't always complete all of the tasks I need to get done as Mom tires pretty easily. I particularly like this part of the hospice program as there are times when I have no one to stay with Mom while I go out for a bit for vet visits (frequently!) or run to the pharmacy. It's nice to know that, for example, every Wednesday from 9-11 am, I can be freed up to get out for a bit whether Carina is here or not. - Nursing aides. Nursing aides are available to the hospice patient to do things such as assist with bathing, eating, to make sure the patient is comfortable and can move around as needed. Nursing aides can be called in as needed to assist the elderly and the caregiver with many daily living tasks.
- A chaplain. Hospice chaplains are non-demoninational and offer support to all hospice patients alike. If your loved one is not very religious at all, consider the chaplain just another friendly support person who will drop by periodically to check on you and your loved one.
Hospice services books on Amazon
Hospice question to my readers
I'm always interested to hear from others in the same boat as me. Since Mom and I are new to hospice, any comments you can leave me will be most welcomed.
Photo courtesy of http://www.medicare.gov/Publications/Pubs/pdf/02154.pdf.
A few items that might make life easier for a hospice patients...
...or their caregiver
Click on any of the blue text to find out a more detailed description of any item.
Additional services provided by hospice service staff.
- 124 hour nurses on call. When one is enrolled in hospice, it's best to call hospice nurses at any time of the day or night for emergencies instead of 911. There's always a hospice nurse on call, and he or she usually calls back in minutes after a call is sent to them. Physical response time may vary depending on where the nurse is in the county but is generally within 30 minutes or so. You can also call a nurse at any time with questions about medication, diet, etc. This support is critical in continuing to have my Mom remain in my home.
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2Inpatient care and respite care. Although the ultimate goal is to keep your elderly loved one in your home, hospice services may recommend inpatient care for an ill hospice patient. All hospices have some sort of inpatient facility where an ill loved one may be treated instead of a hospital. The inpatient care facility is generally set up like a family home instead of a hospital - there are fewer rooms, rooms are set up like bedrooms to be cozy, there are extra beds for family members to rest in, there's usually kitchen facilities, a livingroom, etc. The inpatient care facilities are staffed with hospice nurses, aides, and doctors so treatment mimics hospital care except it's a much warmer environment.
Upon occasion, hospice services may also recomment respite care to allow family members a break. During respite care, a hospice patient may be admitted to the inpatient facility or a short term group home. - 3Assistance with setting up the home environment so it's comfortable and conducive to having the elderly loved one stay there. Hospice arranged for a hospital bed, oxygen tanks and, if needed, would have arranged for many more items I need to have my mom at home (most of the stuff I already had). Help with questions is only a phone call away.
- 4When the time comes, hospice personnel arrange for transportation to the funeral home of your choice. Someone is also available to stay with the family members after the death of a loved one, if needed.
- 5Bereavement support. Once the ultimate moment of death arrive, hospice staff step in to help from everything from arranging for the funeral home to providing counseling services to the family. Bereavement support may include counseling sessions, telephone calls, emails of support for the surviving family members. Hospice services may also bereavement support groups for all ages.
Helpful books about caregiving
Additional helpful links about hospice or caring for the elderly
- Changing of the guard blog
- Margo Arrowsmith does a beautiful job documenting her fathers last days and the care that she gave him. She's an inspiration. This blog is a must read for caregivers everywhere.
- Medicare Hospice Benefits
- This is an article that goes into detail about hospice. I'm on my third read through to digest but it's well written - just contains a lot of information.
- Hospicenet.org website
- This website is a wealth of links where you can delve deeper into hospice services.
- American Hospice organization website
- I'm naturally someone who delves and learns as much as I can about those things important to me. This website is another fantastic resource for those considering hospice services.
- Caregiver stress syndrome
- This Squidoo lens is a must for any caregiver. Caregiving is a stressful job and
Who foots the bill for hospice services?
Medicare Part A may pay for additional services not related to the hospice diagnosis. For example, my Mom was entered into hospice with a diagnosis of CHF (cardiac heart failure). She has a very arthritic knee and gets treatments every 5 weeks as a series of shots. The knee treatment is not related to her heart issues so Medicare Part A will continue to pay for those treatments.
Medicare prescription plans (such as Medicaid Part D) pays for the prescriptions related to the hospice diagnosis, including pain medications.
More can be found about Medicare coverage by clicking the blue link: Medicare Hospice Benefits.
Photo courtesy of Gert - that's her foot after a pedicure.
My Squidoo lens on death and dying
I suppose it was inevitable that, after creating this hospice lens, the next lens I felt the need to write was on Death and Dying. Click this link to head over to this important lens which outlines the signs and symptoms of those dying. Gifts for hospice workers
Please leave me comments about this article...
I don't expect this article to ever be a money maker but I would like it to be a helpful resource to caregivers like me. If you have any ideas which would strengthen this lens, please let me know. Thanks.
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KReneeC
May 27, 2012 @ 7:43 pm | delete
- Great lens that many families should read when considering using hospice services for a loved one. Your mom is adorable. She looks so happy in all these great pictures
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MiddleSister
Feb 9, 2012 @ 11:38 am | delete
- This is such important information and encouragement for families. My mama has taken a tough turn in health, and I may be needing these services for her. Thank you.
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Showpup
Jan 13, 2012 @ 10:53 am | delete
- Wonderful lens. My Dad and my grandma each had terminal illnesses and had hospice care. My mom was their primary caregiver but, living next door, I was here daily as well. I can't say enough positive about the hospice workers and their program. They are so compassionate and a great resource for helping you deal with a terminal illness like we dealt with. They became friends and I'm so thankful for them.
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scarlettohairy Jul 28, 2011 @ 12:39 pm | delete
- This is such valuable information for someone new to hospice. Great information and I love all of the great pictures of Gert!
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AgingIntoDisability
Jul 23, 2011 @ 12:29 pm | delete
- Thanks for sharing your experiences with a difficult subject.
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pawpaw911 Jul 23, 2011 @ 5:35 am | delete
- Love the photos...especially the one with the helmet. Glad she is so well loved.
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AJTyne
Jul 17, 2011 @ 12:06 pm | delete
- Your lenses are truly helpful and compassionate. This reminds me a lot of what we go through with our daughter, who is autistic. But they don't call it hospice, and it seems that hospice is more all-encompassing, helping in so many ways. My own mother, at 73, is still able to live in her own home, but I worry about losing her. Your lens has really helped me to feel better about when she enters the next stage of her life.
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gottaloveit
Jul 17, 2011 @ 3:16 pm | delete
- AJ, I'm glad I could help you - that's the goal of these senior citizen lenses. I've learned so very much over the past 5 years and feel that it's my duty to pass it on. Don't worry so much about losing your mom - just let her know you love her NOW
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Ladymermaid
Jul 16, 2011 @ 7:31 pm | delete
- As always you have done an amazing job on this article. For those who are debating choosing hospice, or not, your article is sure to be a wealth of information. Thank you.
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gottaloveit
Jul 17, 2011 @ 3:17 pm | delete
- Thanks, Lady! Appreciate the nice compliment.
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by gottaloveit
I "married" my Mom, Gertie, on April 7, 2007 when my father, her mate of 65.5 years died. Mom and Dad had lived with me during the summers, in my home... more »
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