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Author, columnist and speaker Carol Bradley Bursack
When the paperwork was finally signed to get hospice care for my dad, I was grateful. There would now be a routine of care for him where he could live in comfort. That's all he really wanted. However, I knew that breaking this news to Mom would be difficult. She'd have to finally admit, and somehow accept, the fact that Dad was dying. After all, hospice care is for people diagnosed as terminally ill.
A brief time after Dad's death, Mom's own terminal condition required hospice care in order to control her pain. She had told me numerous times that she was tired of living and ready to "go." Yet, I believe it still was hard for her to accept that she needed hospice care and what that meant.
Our culture has historically been devoted to cure illness at all costs, and death is often looked at as "failure," no matter the age or condition of the person being treated. Many other cultures readily accept death as part of the life cycle. I believe we, as a culture, are making progress in this direction, but death still tends to be a word people avoid. If it's up to you to inform a loved one that he or she would be more comfortable under hospice care – or that a person they love will be on hospice care – there are steps you can take to get you through this difficult transition.
•If possible, make sure the whole family is on board and understands that hospice care is palliative (comfort) care. Hospice care is not meant to cure the incurable. To be eligible for hospice care, a doctor must already have stated that the person is terminally ill with a life expectancy of six months or less.
•Understand that hospice is simply care that helps a dying person live his or her last months as pain free as possible, and when possible, in a way that is meaningful to them. You and a hospice chaplain or other support person can explain to the ill person what hospice service provides. Hospice is not a "death sentence." A person's health can sometimes improve under hospice care. In that case, they go off the program.
•Hospice chaplains are trained in helping people through transitions. Let them guide you. Sometimes it's better for family members to take a backseat to hospice professionals when it comes to giving news of this sort, since the professionals have experience helping people understand this transition.
•Hospice staff members and volunteers don't dance around the term "death." They are there to deliver comfort care, and also help the person live their life until they die. Part of living the last months or weeks of life well is to understand and accept that one is dying. A dignified and meaningful death is the goal.
•Know that theory and reality can be different. Both of my parents wholeheartedly believed in hospice and the hospice mission. However, accepting and even championing an idea as opposed to having it apply personally can be quite different. Give the person who is going on a hospice care program time to grieve and accept the terminal diagnosis.
•Or – expect yourself to struggle with this concept, but note that your ill loved one may be relieved that he or she no longer needs to undergo unpleasant or painful treatments to no avail.
•People don't always respond in expected ways to the reality that they are dying. I've known people who've talked about "being with God" for years, yet when faced with their own impending death, they wanted to fight death all the way. That is their right. I've known others who seemed afraid of death throughout their lives only to experience a complete turnaround, facing impending death with faith and serenity.
•Every day won't be the same. Some days a person may accept or even seem to look forward to leaving a wrecked body behind, yet on another day, this same person could sink back into the grieving process. Be with them wherever they are.
•You and the hospice team are there to support the ill person in any way possible. Hospice care helps you share your loved one's last journey.
Hospice organizations understand that the life cycle includes death. The staff and volunteers believe in a dignified, pain free death for everyone, and they do all that is in their power to provide this kind of comfort care. Breaking the news that a loved one is on hospice care may be the hardest part of the experience.
After that concept is accepted, you can concentrate on supporting your loved one all the way through to the end. Work closely with the hospice team to understand every measure taken. Grieve with your loved one when grief is evident. Celebrate the person's memories with them. Respond to requests whenever possible, to increase mental, physical and emotional wellbeing for your loved one. Adjust your attitude to mesh with the hospice mission to help your loved one live well until he or she dies.