Archive for August, 2014


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A planned hospitalization or unexpected health emergency can occur at any point during the disease progression and may or may not be the result of Alzheimer’s or another dementia.

A hospital visit or overnight stay can cause anxiety or discomfort for the person with the disease. The change from home to an unfamiliar environment and the added stress caused by medical interventions may lead to increased confusion or disorientation. Knowing what to expect during a hospital visit can help make the experience more comfortable for everyone.

Plan ahead

In the early stages of the disease, the person with dementia is able to make decisions on his or her own behalf and should be included in all conversations about medical care. It is important to address wishes for health care, including emergency medical treatment, as early as possible so that family and care team members can confidently implement the plan in the event the person is no longer able.

As the disease progresses, it will become increasingly difficult for the person with dementia to understand the purpose of hospital visits and medical intervention, and he or she will be unable to participate in the health care planning process. The care partner or a member of the care team should always be present to explain the reason for the hospital visit or medical intervention as much as possible and provide support and act as an advocate on their behalf.

Consider the following:

Prepare an emergency kit with legal paperwork and current medical information. This information should be available in an easily accessible place such as in an envelope attached to the refrigerator. Some items include:

  • A list of current medications and allergies
  • Copies of legal papers (e.g. living will, advance directives, power of attorney)
  • Insurance information
  • Name and phone number of physician
  • Names and phone numbers of emergency contact and additional care team members
  • Request for brain autopsy or organ donation
  • A physician’s note confirming the diagnosis

Review current legal documents stating preferences for health care, including life-sustaining treatment. The following documents may help prevent an emergency decision from taking place and provide assurance that the wishes of the person with the disease are upheld.

  • Power of Attorney for Health Care: Names a health care agent to make health care decisions on behalf of the person with dementia when they are unable.
  • Living Will: A type of advance directive that includes preferences for medical treatment, including life-prolonging treatments.
  • Medical Release of Information: Ensures that a doctor can share information with the person’s family member or friend. This can be beneficial to those who are helping coordinate care.
  • Hospital Visitation Form: For those in a domestic partnership, hospitals in some states may enforce strict visitation laws and/or require special forms if relationship is not legally recognized in that state.
  • Do Not Resuscitate (DNR): A physician order to prevent any attempts at revival, particularly if CPR or defibrillation is needed. ¬†Without it, medical professionals are required to perform resuscitation.

Prior to hospitalization

  • Share information regarding the diagnosis, other medical conditions or allergies with the entire medical team.
  • Provide information about personal habits, dietary preferences or any environmental needs like a private room that would make the experience more comfortable.

Ask questions

  • Which procedures will be performed and how? What are the risks and benefits, expected results and expected length of recovery?
  • Is assessment or treatment available at an outpatient clinic?
  • How long is hospitalization required?
  • If anesthesia is used, how will this affect cognition?
  • What are the visiting hours? Are extended hours available?

Hospital discharge planning

At the end of a hospital stay, health care providers will make recommendations for long-term care needs and recovery following hospitalization. A member of social services or a discharge planner may also be involved if the care plan calls for in-home services, referrals to rehabilitation facilities or outpatient services. Post-operational or discharge orders may involve several components including new medication, therapy, wound care or monitoring.

The following questions may help the individual and their car team to prepare for discharge:

  • Which¬†activities may require more assistance after discharge?
  • When is it safe to engage in physical activity?
  • What is the safest way to manage pain?
  • Have medications changed and how often should they be administered? Which signs or symptoms are causes for concern? Who should be contacted?
  • Is a follow-up visit necessary? When will this occur?
  1. Stay in touch — show you care. A card, a call or a visit all mean a lot.
  2. Treat the person with respect and dignity. Focus on all that the person with dementia can do.
  3. Do the little things. Drop off dinner or run an errand.
  4. Be specific when offering help. Tackle a task on the family’s to-do list.
  5. Educate yourself about Alzheimer’s. Learn about its effects and how to respond.
  6. Include everyone in activities. Plan a picnic or dinner at your place; include the person with the disease whenever possible.
  7. Be a good listener. Support and accept — try not to judge.
  8. Encourage a healthy lifestyle. Suggest practical tips to exercise and eat right.
  9. Allow the family some personal time. Fill in as a caregiver, when needed.
  10. Keep all family members in mind. From tots to elders, each person reacts uniquely.

family on couch

 

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It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

  • Hoping that the person is not ill
  • Expecting the person will get better
  • Convincing yourself that the person hasn’t changed
  • Attempting to normalize problematic behaviors

Anger

  • Frustration with the person
  • Resenting the demands of caregiving
  • Resenting family members who can’t or won’t help provide care
  • Feeling abandoned

Guilt

  • Wondering if you did something to cause the illness
  • Feeling bad because you’re still able to enjoy life
  • Feeling that you’ve failed if, for example, you can’t care for the person with dementia at home
  • Having negative thoughts about the person, wishing that he or she would go away or even wishing that he or she would die
  • Regretting things about your relationship before the diagnosis
  • Having unrealistic expectations of yourself, with thoughts like: ‘I should have done…” “I must do everything for him or her’ or “I must visit him or her every day.”

Sadness

  • Feeling overwhelmed by loss
  • Crying frequently
  • Withdrawing from social activities or needing to connect more frequently with others
  • Withholding your emotions or displaying them more openly than usual

Acceptance

  • Learning to live in the moment
  • Finding personal meaning in caring for someone who is terminally ill
  • Understanding how the grieving process affects your life
  • Appreciating the personal growth that comes from surviving loss
  • Finding your sense of humor

It’s important to take care of yourself during this time.

couple kissing

Face your feelings

  • Think about all of your feelings — positive as well as negative
  • Let yourself be as sad as you want
  • Accept feelings of guilt — they’re perfectly normal
  • Work through your anger and frustration
  • Prepare to experience feelings of loss more than once as the person with dementia changes
  • Claim the grieving process as your own. No two people experience grief the same way. Some people need more time to grieve than others. Some realize their feelings right away, while others may not grieve until caregiving has ended. Your experience will depend on the severity and duration of the person’s illness, on your own history of loss and on the nature of your relationship with the person who has Alzheimer’s.
  • Know that it’s common to feel conflicting emotions, such as love and anger, at the same time
  • Consider writing in a journal as a way to help you express your feelings.

Accept yourself

  • Think about what you expected from yourself. Are your expectations realistic?
  • Ask yourself whether your feelings of guilt are justified and whether you can do something differently to change them.
  • Accept things that are beyond your control.
  • Make responsible decisions about the things you can control.
  • Think about the fond memories you have of the person.
  • Allow yourself to feel good.
  • As time permits, get involved or stay involved in activities that you enjoy.
  • Turn to spiritual beliefs, if you choose, for consolation.

Get support

  • Talk with someone you trust about your grief, guilt and anger — a counselor, pastor, family member or friend.
  • Connect with other caregivers, family members and friends affected by Alzheimer’s.
  • When you talk with other caregivers, share your emotions. Cry and laugh together. Don’t limit conversations to caregiving tips.
  • Know that some people may not understand your grief. Most people think grief happens when someone dies. They may not know that it’s possible to grieve deeply for someone who is still alive but terminally ill.
  • Get support from others in similar situations by attending a support group or joining ALZConnected.

 

Watch this video to learn more about what researchers are doing on a global level to help win the fight against Alzheimer’s disease. Check out the full 2013-2014 Alzheimer’s Disease Progress Report here.