Caregiver Education a Must

I can't believe it has been almost a month since my last entry. Between tending to my family's needs and preparing for trainings and presentations, I've just let the time get away from me. The response we are getting for the need for education in working respectfully with those people with memory loss is both gratifying and a bit overwhelming. I've studied Alzheimer caregiving for so long I go to give a talk and think, 'surely everyone already knows this'. And then I find out that is not true. As a nurse I wondered how people managed their illness once home. Do their caregivers know what to do? Do they know how to care well? For example, having a baby in a hospital and having a nurse fetch bring him to you every 4 hours is a lot different from having that baby 24/7 and fitting the rest of your life in. I saw families take home someone with mental illness from the units I worked on and decided they needed education about the illness. I started a Family Educational Service. It was so well received, I did the same for families caring for someone with Alzheimer's. The difference of course is that the person with a cognitive disorder often cannot be fully participating in decisions about care. They often don't believe there is anything wrong with them at all. This is where education about how a person with dementia thinks is so very important. When families learn this they are so enlightened as to the reasons behind the changes in behavior. It lightens the load of guilt, frustration and anxiety. If you haven't read my book Matters of the Mind...and the Heart, do so. You will learn how people with memory loss think differently but they are still there. The mind is not the same as the brain. The brain is an organ. The mind is everything the person is. We must learn how to tap the mind, the person's personhood.

My column for November in SS Senior News

Hello God, it’s Me; I need You

In a research poll asking caregivers where they get their support, sixty-six percent answered “God’. The remaining thirty-three percent said friends, books, groups and professionals. Being a caregiver is lonely and laden with emotion. A diagnosis of Alzheimer’s is a life-changing event for families, one that continues to change life. Emotions emerge that surprise, even shame the person feeling them. Grief and sorrow over the losses the person sees in their diagnosed family member may be more easily managed than the emotions of anger, resentment, persistent impatience, and thoughts of hatred. These emotions feel unnatural and are not usually revealed to friends or family members. The caregiver carries them alone, unless they feel the presence of God.
I often ask caregivers if their faith brings them comfort through the caregiving journey. If they answer ‘yes’ I know the emotional impact will be lessened. If their religious practices like prayer and worship are an integral part of life and bring comfort and meaning to life, the person feels less alone.
Old Testament verses in Proverbs 3: 3-6 reads, ‘Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.’ The person of faith looks to God to hear their concerns, to continue to love them and forgive their shameful responses to caregiving. Some pray for patience to endure the challenges caregiving brings. Others are comforted believing God will guide them and protect them. God is the best care partner a caregiver can want.

Study of Spouses with dementia

If Your Spouse Gets Alzheimer's, You Might, Too
Risk is 6 times higher than for other husbands, wives, study finds
Lifestyle

WEDNESDAY, May 5 (HealthDay News) -- Older adults whose spouse has Alzheimer's or another form dementia face an increased risk of dementia themselves, a new study finds.
It included 2,442 people (1,221 married couples), aged 65 and older, in Utah who were dementia-free at the start of the study. During 12 years of follow-up, 125 husbands and 70 wives developed dementia, and both the husband and wife developed dementia in 30 couples.
After adjusting for a number of factors, the researchers found that people with a spouse who developed dementia were six times more likely to develop dementia themselves than people whose spouses never had dementia. Men had a higher risk than women. Older age was also significantly associated with dementia risk.
"Future studies are needed to determine how much of this association is due to caregiver stress compared to a shared environment," study leader Dr. Maria Norton, of Utah State University, said in a news release. "On the positive side, the majority of individuals with spouses who develop dementia did not themselves develop dementia, therefore more research is needed to explore which factors distinguish those who are more vulnerable."
The study was published May 5 in the Journal of the American Geriatrics Society.
"Given the significant public health concern of Alzheimer's disease and other dementias, and the upcoming shift in population age composition, continued research into the causes of dementia is urgent," Norton said.

Television

I want to be on national television to tell the story of Alzheimer caregivers we've coached for the last 10 years. If you know of a person I can contact to make that happen, great! Most of the news focuses on the negative aspects of Alzheimer's. I'd like to tell a more positive story of the heart of the Alzheimer caregiver.

Speaking Alzheimer's

Just back from a week in Klamath Falls Oregon and eager to resume searching out talented professionals in New England (for now) who wish to add Alzheimer coaching to their practice. Serving caregivers is so rewarding.
I was on WATD in Marshfield (Massachusetts) this morning (to be aired tomorrow @
8am) speaking about learning to speak Alzheimer's. The best thing to learn to enhance life for your care recipient and ease caregiving for you is to learn a new way of relating. Much of the frustration, yelling out, and aggression is borne out of the lack of education of the caregiver. S/he has to learn a new way of talking; slower, face to face, simpler, with no distractions, etc. I've written a paper called 'How persons with memory loss think differently and How you can help by relating differently'. If you want a copy of it sent to you via email, email me beverly.moore@stilmee.com. I'd be happy to send you a copy. There are about 25-30 sound suggestions.

Caring Well

I'm giving a talk soon for families on how to get through the dementia journey well. The first thing a family needs is information. Questions like What is dementia? How do I understand what is happening to my family member? What do I need to learn to relate to him now that he has dementia? are what families ask. These are important questions. The more a caregiver knows about what is happening to their family member, the better understanding he will have of the changes in behavior.
What do families need to know? They need to understand each other's way of expressing their love for the person. Each family member has a different relationship with the person and grieves the loss of that person as he was. It is hard to change a pattern of relating that has been in place for many years. But, if each person learned a new way that keeps them in relationship with their family member, each would find it joyful.
People with dementia are still here. We just need to find them and stay in their world. It is the only way to love them now.
Coach Beverly