Expert Column
Audrey Wuerl 
Audrey Wuerl, RN, BSN, PHN, is Education Coordinator for Hospice of San Joaquin in...read more
Articles In This Column
- Alzheimer's Disease: Understanding Sundowning Syndrome
- Choosing Between Hospice Care & Palliative Care: An In-depth Look at Your Options
- Hospice Care & Palliative Care: Choosing the Right Level of Care
- Alzheimer's Disease: Understanding Wandering Behavior
- The Importance of Partnering with Physicians in End of Life Care
- Artificial Hydration & Nutrition in Advanced Alzheimer's
- Hospice & Palliative Care: Where's the Common Ground?
- Determining Hospice Eligibility for Dementia
- Hospice Care: Living with Terminal Illness
- Living with Dementia: How Hospice Care Can Help
Hospice & Dementia Care
Comments For "Determining Hospice Eligibility for Dementia"
I am taking care of an alsheimers patient and want to know if people think that it is best to keep in own enviorment as long as possible with at home care of too put their family in a home. My opinion is once they go to the home they only go downward and with the at home care you still can let them see their own home and personal belongings when coqnitive. I try to work with this wonderful lady and when I do i get answers and she loves helping me with things to please me, but the family thinks she is going down hill because they do not work with her.
Dear Cydny:
It would be wonderful to allow people to stay in their homes as long as possible; that is, after all, what hospice care is all about. Familiar surroundings, cherished possessions and loving caregivers can add much to the quality of life for people suffering from Alzheimer’s disease. It is when the “problematic behaviors” (as outlines in this article) develop that prompt families to find nursing home placement for their loved ones.
Your description of working with this patient illustrates the privilege caregivers can experience from working with the terminally ill. It is indeed a special and intimate space you are in. But, there are wonderful nursing homes that give excellent care to Alzheimer’s patients. That is why I outlined the eligibility requirements for hospice care so families can see the benefit of collaboration between the nursing home and the hospice for the patient.
Alzheimer’s is a terminal disease. The family is probably seeing changes, which are expected, and this does not reflect on your care. Continue to give loving support to this patient, and know that what you do is so important and matters.
My mother has been receiving hospice services for 10 months becase of "declining health" after spending approx 5 months in and out of hospital/rehab. She has advanced alzheimers, severe COPD, and congestive heart failure...among other issues. She came home to me in a wheel chair, but we enrolled her in daycare and she has improved dramatically and even returned to walking. Now I am told she is not eligible for Hospice anymore. I have to tell you if was pure agony for me when I was first told she was eligible and I faced her imminent death. Now I have become so dependent on their support ...and I know it is a prime reason she is doing so well, that I do not want to lose them. Even though she is doing well, we all know her diagnoses are terminal...and she has gotten sick every other month or so. I feel once hospice (and palliative care) services are in place, they should not be removed as long as the case is still considered terminal. It has been an emotional roller coaster for me...not to mention the stress of 24/7 care. Is there any way you can think of to remain eligible?
Dear Jocelyn,
Facing eminent death of a loved one is very trying on family members. Your description of your mother’s decline and then “improvement†is not uncommon with patients with advanced dementias. In fact, it could be a testimonial to your good care and guidance. Now, however, you may feel confused and even “abandonedâ€. Let me help clarify the situation so you can rest assured that hospice services will be there for your mother when she does (again) become eligible.
The hospice benefit is very specific regarding patients whose prognosis extends beyond the 6 month period. In cases of dementia, there needs to be measurable decline for recertification: loss of ability to care for self, weight loss (generally monthly), cognitive changes, etc. Your mother has improved, regardless of reason, and the hospice must be accountable to the physician and the benefit as it is written under Medicare. We have seen this happen on occasion at my hospice, as well. While difficult for family, the hospice must decertify the patient because she is improving, not declining.
Hospice is wonderful, supportive care. My only suggestion to you is to know services will again be available for your mother when her condition declines. The prognosis for terminal dementias, while extendable beyond the initial 6 month period, must be carefully documented through decline.
Celebrating Life!
Audrey
Dear Jocelyn Cote-Medeiros,
My heart went out to you when I read your piece. I know the stress associated with the kind of care you are providing. You need help / support providing this care. If you are primarily the only point person coordinating your mother's care as well as providing for her direct care, you and your mother are in danger.
I know that sounds dramatic and few will be honest enough with you to tell you this, but the hyper-vigilent stress of being "on" all the time and knowing it's all up to you concerning what your mom receives medically, nutritionally, physically, mental stimulation wise, social stimulation wise, etc, taxes the body beyond what it was created to handle.
I have seen primary caregivers develop depression, anxiety and other health disorders themselves from the adrenaline overload and eventual adrenaline shutdown that biophysically comes with the high stress associated with continual caregiving.
Many who provide advice for caregivers either avoid this topic or rarely address it. This is why one client of mine told me she would get in her car and drive down the road crying and screaming. She was always left with the impression that her parents care was all on her. Elder care advisors acted as if her total commitment to her mother's care management and her mother's direct care was a law of the universe. She was left with the impression that in order to be a "good daughter" she had to do it all. But she also knew she was disappearing in the process and her marriage and her relationship with her own children were being neglected.
As all the variables surrounding her parents care consumed her, some things had to be let go. Some things got less attention simply because there is only so much time in the day and there is only so much one person can manage and still be able to have a slight bit of a life themselves.
As some things got attention, others got less attention, which allowed other problems with her parents to crop up. (Example: The limited amount of social and mental stimulation she could provide her mother led to her mother being able to sleep too much sleeping, which led to decreased strength for walking, which led to being a fall hazard.)
It wasn't until her mother went into a facility that she realized facility placement is something that should have been done a long time ago. Once in a facility her mother had lots of social stimulation and a living environment which enabled walking more. We saw great improvment across the board. And the plus was the daughter got a bit of a life back and now the interaction she has with her mother is relational - she can enjoy the company of her mother and doing things together now since she isn't comsummed with all the other things necessary for her mother's care.
No one is meant to be doing caregiving essentially alone 24/7. If you do this you are placing yourself and your loved one in danger. For her own health and safety as well as the protection of her other significant relationships she settled for being the "good enough daughter," which in the long run with all things considered has turned out to actually be the "very good daughter."
I know our culture exemplifies the lone ranger self sacrificing caregiver role, but that places too much guilt on the caregiver when they become overwhelmed (or even possibly angry and resentful) at having all the responsibility.
In situations like this marriages fall apart, children are neglected and the health care needs of the caregiver are delayed and even ignored.
The one thing I always tell people is this area has to be seen in terms of the elderly loved one's rights and the family member's rights. Both sets of rights have to be allowed and considered. While our parents are our parents, their care doesn't have the right to destroy our life. Yes Yes Yes we love them and want to sacrifice for them, but not to the point where expections are placed on us that we sacrifice our own entire life and health for them. When they were in their full selves years ago, they would not have wanted this for us.
As our parents age, sometimes it is them who are placing the guilt on us. As we age, we go in reverse not only physically, but also mentally. Even those without a dementia dx will flow back into the selfishness stages we've traditionally only associated with teenagers. Our elderly parents gravitate towards seeing things only through their perspective. We then don't want to set boundaries with them because of our own fear of seeming selfish.
There are lots of "guilt voices" for us to hear out there. Sometimes one of those guilt voices is our own. We look at the caregiving mountains we see that others have managed to climb and then we think we should be able to climb something similiar. (Often those stories are exagerated or they fail to relay the actual danger that existed for both the cared for and the caregiver)
The care variables surrounding caring for the elderly are very many. If you are wise, smart and safe, you will protect yourself and your mother and get lots of other in-home care (see your area department of aging) or give your mother the gift of arranging for "an apartment" in a loving, caring senior care facility.
Yes there are money issues, but some Department of Aging have graduated income level in-home care programs that can address this. Also, although none of us wants our parent's hard earned and saved money to be "all used up," the cold hard reality facts often times require that this be exactly what is done. (Is the money more important than the health and safety of our own lives and those of our parents? See Medicaid Spend-Down information)
Anyway, I just wanted to give another perspective, which is often not a well received perspective, but a perspective that needs to be allowed to be considered none the less.
As people grow older, they face dealing with an onslaught of diseases and disorders related to advancing age. Alzheimer's disease is one of the many diseases that concern seniors. It is the most common form of dementia and it affects the parts of the brain that control memory, thought, and language skills. Unfortunately doctors do not know what causes Alzheimer's and there is no known cure. Early detection is very important as it gives doctors the best chance to treat the symptoms of this disease. So what are the symptoms?
Forgetfulness is generally the first sign that a person may have Alzheimer's. This symptom occurs in stages and is the main symptom of Alzheimer's. It starts with forgetting minor things like where you put the car keys or the remote control for your television. A person will forget recent events in their lives such as attending a birthday party or watching a movie. Usually this type of forgetfulness will seem like a nuisance but is usually not enough to cause serious concern. As Alzheimer's progresses, a person's forgetfulness will begin to affect their daily lives and will signal that a person needs medical attention. They will begin to forget how to do simple, daily tasks and may fail to recognize family and friends.
In the middle and late stages of Alzheimer's disease, a person's ability to think clearly is affected. They may also lose the ability to speak, understand, read, or write. Because of the effects of the disease, a person may become distressed and aggressive. People with Alzheimer's also have a tendency to wander away from home causing them to need around the clock care.
By being proactive and aware of these signs and symptoms, you can help yourself or your loved one lead a normal life for as long as possible. Available treatments can help to delay a person's mental deterioration.
why does a patient in a nursing home with alzheimer's need hospice? Isn't that what we pay the nursing home for?
Dear Jean,
Many people feel that once they place their loved one in a nursing facility, all their care will be provided by the nursing facility. That is, in fact, what you are paying for. But, hospice services are specific to ensuring dignity, respect, pain management and symptom control for those patients nearing the end of their life. We work with the nursing home to provide guidance, medications, and case management for the patient. In that respect, we aid the patient, family, and nursing home in providing compassionate care and counseling on end-of-life care. We can help augment the personal care patients are already receiving from the facility with our own hospice aides. We can keep the patient from being sent back and forth to the hospital; this is tiresome for patients, and does not provide cure (in fact, can hasten death). And just as important, we can keep your loved one as pain free as possible.
With Alzheimer's disease, knowing what to expect at each stage can be extremely valuable to facility, patient, and family. So, having hospice care for such a patient is highly valuable.
Incidentally, hospice services are covered under Medicare, Medicaid, and most insurance providers. A not-for-profit hospice does not charge you for their services.
I hope this help clarify!
Celebrating Life, Audrey
Audrey,
Really enjoyed learning about the FAST criteria for hospice placement. This really helps me with the current situation with a client and their family members.
thank you once again for your help.
Olga