Local News | Alzheimer's Association

Suggestions from a Caregiver

Support Part 10
What I WISH I Would Have Known – Hospice Step 4

By Elizabeth Howe, M.B.A.

Over the last three articles we have gone over three crucial steps to selecting a hospice. As a brief review:

Help your loved one determine or review their last wishes, using a tool such as the ‘Five Wishes' (http://www.agingwithdignity.org/) living will discussed in Part 7 of this series. Tap into previous experience with death and dying, either yours, your loved one's, that of someone close to you, or a professional. Seek assistance from an organization such as the Alzheimer's Association, dedicated to assist those with a particular condition, and which can provide specific information about the expected progression of the condition. These organizations or other research can assist with decisions such as the value (or lack of value) provided by antibiotics, force feeding, forced fluids, and so on, once your loved one is walking the final months of life's journey.
Use the information provided in Part 8 to select a primary care physician that will honor your loved one's wishes as you navigate the last months of life. Both caregiver AND care-receiver should do this…one never knows what is around the corner. NOW is the time, even if you think you/they like your current primary care, to ask the tough questions posed in Part 8. Recall that, although you may both consider a specialist the ‘primary' doctor for your loved one's condition, there must be a local ‘primary care physician' for hospice. Specialty physicians do not fulfill this role. Be sure your primary care physician has a broad definition of ‘last months.' Conditions such as Alzheimer's and other neurological conditions, often do not present the signs of ‘last months' as do such conditions as the various cancers.
Selecting a hospice service should not be done at the last moment when you decide there is a desperate need for one. Especially for Alzheimer's and neurological conditions, progression can suddenly speed up. Thoughtfully and carefully make a selection, using guidelines provided in Part 9. Start right away after wishes are known and a primary care physician has been selected.

The three steps above are PART of what I WISH I would have known. This article looks at when to begin using hospice services. The decision to enter hospice should be an affirmative choice to live the balance of life to its fullest, supported by a comprehensive program of medical care. This is something you and your loved one can control…when to begin using hospice services.

Palliative care is likely the first step and may start before you use a hospice service if you have the resources to be your loved one's care manager. Palliative care is designed to improve quality of life when there is a reasonable expectation that the end of life is not near, but assistance dealing with symptoms of a terminal illness would be helpful. If your loved one is having trouble communicating, ‘quality of life' speech therapy services through a rehabilitation center may help. They can provide a ‘therapy' based on the specific needs of your loved one. For example, if they have difficulty verbalizing but can point to things, a notebook to carry along to facilitate communication is one option. If your loved one is experiencing physical movement difficulties, ‘quality of life' physical therapy services through a rehabilitation center can help your loved one maximize their movement/balance capabilities. If your loved one is in pain, enlisting the help of a palliative care physician can help with pain control.

My loved one and I both thought it would be obvious when to move from informal palliative care to use of a hospice service to develop a care plan and coordinate palliative care. WRONG, it was not at all clear and we waited WAY too long.

A primary care physician must refer to hospice with a statement that it is expected the care-receiver is up to the last 6 months of their life. For neurological conditions such as Alzheimer's, there is no clear-cut progression timeline. This is where having a primary care physician willing to refer to hospice once there are no more treatment options is so important. There have been instances where people enter hospice care, are there 6 months and cycle out only to return at some point. This is a good thing, not a bad thing.

Nationally, the average life span after hospice enrollment is 4-6 weeks, with a significant number dying within 7 days. Hospice professionals note that, with delayed entry into hospice, the care-receiver and family are not able to take advantage of the full range services offered—social, psychological, emotional and spiritual, as well as medical. Hospice (you've learned how to select a good one) will help your loved one die with comfort and dignity. Hospice helps the family survive and grow from the experience through the initially provided family support, continued through support groups afterward.

So when should you ask your primary care physician for a referral to hospice?

If your loved one could benefit from palliative care and you are not able be the one to develop and manage a care plan. Hospice services need not be provided in a facility and most often are provided to the care-receiver in the home.
If your loved one experiences a significant change or has reached a significant level of accumulated function loss. A couple examples are, having trouble swallowing some things, falling, having physical pain or other symptoms that your primary care physician cannot find a cause for. When evaluating accumulated, think back 6-12 months or even longer.
When you are seriously wondering if it is time to secure a hospice service.

Article published in Great Plains Chapter, Alzheimer's Assn., November 2010 Newsletter © Elizabeth (Betsy) Howe 2010

Click here to read all the Suggestions from a Caregiver by Elizabeth Howe

Governor Heinemann Signs LB157For Guardianship Reform Into Law

The Alzheimer's Associaiton of Nebraska announces that LB157, which set inmotion necessary adult guardianship retorm in Nebraska, has been signed into law by Governor Dave Heinemann. The Alzheimer's Aassociation, in cooperation with Senator Russ Karpisek, Senator Colby Coash and Senator Brenda Council introduced and supported legislation during the current Unicameral session which adopts the Nebraska Uniform Adult Guardianship and Protectice Proceedings Jurisdiction Act.

Adult guardianship is the process through which a court appoints and oversees an individual to serve as the legal decision maker (guardian) for another adult, who due to incapacity or other disability, is unable to make decisions for himself. Due to the impact of Alzheimer's disease and other dementias on a person's ability to make decisions and in the absence of other advanced directives, people with Alzheimer's disease may need the assistance of a legal guardian. The process of appointing a guardian is handled in state courts. Guardianship jurisdiction is a legal concept that determines which court has the power to hear and decide legal issues, such as appointment of a guardian. Often, jurisdiction in adult guardianship cases is complicated because multiple states, each with its own adult guardianship system may have an interest in the case. Consequently, it may be unclear which state court has jurisdiction to decide the guardianship issue.

Adult guardianship jurisdiction reform is a national priority for the Alzheimer's Association. The adoption of this guardianship jurisdiction reform will allow for a more uniform and efficient guardianship system to remove uncertainty for individuals with dementia in crisis and help them reach resolution faster. It is a national goal to have this act passed in each state. This act establishes a uniform set of rules for determining jurisdiction and thus, simplifies the process for determining jurisdiction between multiple states in adult guardianship cases. It will establish a framework that allows state court judges in different states to communicate with each other about adult guardianship cases. It does not make any substantive changes (for example, whether guardianship is appropriate or who should be awarded guardianship) to adult guardianship law. In an ideal future, the guardianship jurisdiction act will be passed in all states to allow the question of jurisdiction in adult guardianship situations to be settled more easily and provide predictable outcomes in adult guardianship cases.

The Alzheimer's Association of Nebraska praises the Nebraska Legislature and Governor for the enactment of this legislation. For more information, contact Teresa Stitcher Fritz at 402-420-2540or Clayton Freeman at 402-502-4300at the Alzheimer's Association of Nebraska.

Medicare Update: Annual Wellness Visit

Under the Affordable Care Act (the health care reform law), Medicare will now pay for an annual wellness visit, which will include the creation of a personalized prevention plan and detection of possible cognitive impairment. This new benefit began on January 2, 2011.

An annual wellness visit is like a check-up or physical exam. Until now, Medicare did not cover annual physicals. Medicare will pay for the annual visit once every 12 months. During the exam, the doctor will assess an individual's cognitive function by direct observation, with due consideration of information obtained by way of patient report, concerns raised by family members, friends, caretakers or others. Click here to read a Fact Sheet regarding this important health care reform law.