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Debunking the Hospice Myth
Gladys receives services from Hospice Advantage twice a week. When I mention this to friends or in casual conversation with acquaintances, they get sad looks on their faces, assuming Gladys is on her death bed.
I used to think that hospice was a place where people went to die. I met a hospice representative, Cara, at a health fair and we struck up a conversation. She explained that they also provide services for dementia patients and told me to call them when I thought I might need their services. She would send someone out to evaluate Gladys to see if she qualified for hospice care.
A month or so after that conversation, we were notified by Gladys’ day care that they could no longer accommodate her because she was beginning to require too much individual attention and care. I called Cara, she sent someone to evaluate Gladys and we began using their services.
Unless you live with and take care of someone with limited physical capabilities, it may be difficult to understand how much it means for someone else to bathe, groom and dress your family member, even for just a few days a week. The nurse coming by on a regular basis also cuts down on doctor visits, not to mention the “event” of getting Gladys out of the house and into a car.
The following quote is from the Hospice Advantage August 2010 Newsletter
Myth: Hospice is a place
Reality: Hospice is a service
Another myth about hospice is that hospice is a place. The reality is that hospice is actually a service and can be provided in several different places. Hospice services can be provided in a nursing facility, an assisted living facility, a hospital, an inpatient hospice unit, or a patient’s home. In fact over 68% of hospice care is delivered to patients in their own home, where they want to be. Services are provided by an interdisciplinary team consisting of nurses, nurse aids, doctors, social workers, chaplains, and volunteers. There are also many different hospice companies that, for the most part, offer the same kind of services.
Twice a week a nurse comes by to check:
- her vital signs
- her weight
- that she is still eating
- pain/comfort level
- general mental and physical deterioration
Twice a week a home health aid comes by to:
- bathe and dress Gladys
- comb her hair
- change her bed
- bring supplies
The home health aid also:
- gave me instruction on helping Gladys stand, sit and walk
- showed me how to change her while she is in the bed
They also provide:
- adult diapers
- disposable bed pads
- wipes
- dry skin cream
- perineal wash
Equipment provided so far:
- hospital bed and table
- hoya lift
- oxygen
These services are not free but they are covered by medicare. We have the option of using the home health aid three days a week but we don’t. Other services available include a social worker, respite care, volunteer sitters (available for a few hours) and a chaplain. We don’t use the chaplain service – I work in ministry so this isn’t a service I require. We also haven’t used the volunteer sitters yet.
If you are the primary caregiver for someone who lives with you, these services will give you a little relief both physically and financially.
A Caregivers Goals for 2010: Unlocking The Old Me
Taking My Life Back
Before I became a caregiver there were things I used to enjoy that have all but disappeared from my life. I realized this a few months ago when I went on vacation for the first time since I became Gladys’ caregiver. My life pretty much revolves around Gladys’ needs and I’ve neglected myself in many ways. That’s about to change.
The holidays gave me a chance to jump start some things that I want to bring back into my life. It’s amazing how little things can provide so much satisfaction. The following changes are being re-incorporated into my life.
Date Night
I haven’t been married for 38 years by ignoring my husband. Fridays used to be our date night. It’s something we started about 20 years ago and kept up until 2008. While we probably can’t make a weekly date, we can probably work in a date once a month. I just have to convince my daughter, Anita, to watch Gladys for us while we go out.
Love A Good Book
I love to read. Give me a good thriller or murder mystery and I’m a happy camper: Vince Flynn, Michael Connelly, Walter Mosley, JD Robb or Tom Clancy. Between Thanksgiving and New Years Eve, I read four novels – three JD Robb and one Michael Connelly. JD Robb is a recent author that I started reading and I’m trying to catch up on the Eve Dallas series. Fortunately I found a good second hand book store that also takes trade-ins. I didn’t get much else done, but I was content and eager to get back to my books.
My reading goal is at least one novel per month.
Food Network Anyone?
Until last month, it had been a while since I tried a new recipe. Over the past month I’ve tried at least six new recipes, including frying a turkey. I shared my new recipe adventures with my Facebook friends. It’s funny how so many friends responded to the cholesterol, calorie laden recipes but not a peep when I share the healthy ones. 
This goal is to try a new recipe at least twice a month.
Regular Vacations
This year I went on vacation alone and that was a stretch. Not because I can’t handle being alone (I enjoy alone time), but because my husband is semi retired and has not worked in about two years. In addition to that, my hours were cut just before Gladys came to stay with us. However, we’re going to work it out along with care for Gladys while we are gone.
Exercise of Any Kind
Just before Gladys came to live with us I started walking for exercise. It wasn’t much but it was something. Over the past year and a half I have become a bonafide couch potato and gained about 10 pounds. I’ve got to get back to walking. Also need to incorporate a stretching routine.
I believe all of these are doable. It’s not really a lot, it just takes some planning and time management.
What About You?
If you are a caregiver who has become stuck in a rut, I hope you will also take a look at some things that you can do to take your life back.
Comments? Feedback?
A Custody Issue – Can You Help This Young Woman
This young lady shared her situation through “Share Your Caregiver Story.” If you have any suggestions that could help her, please leave them in the comments section. I think she will appreciate any help she can get.
well… where should I begin!? I have taken care of my grandmother for over 15 years. After her fall last year, she was released from the hospital under hospice. Her son took her home to live with him . . . His wife does not care for me or my grandmother. We have repeatedly had fights! My grandmother has told her son, she wants to come back home and live . . . He has refused her request twice. His wife does not care about my grandmother. I have thought about getting an attorney. He is almost keeping her like a prisoner. He does not let her out of the house except to get a haircut. HELP!! And I am just the grand-daughter who has cared for her. .
