Wednesday, February 29, 2012

Respite Time and Prayer

My lovely sister-in-law called and asked me to take a break with her in several months. She is planning to take me on a cruise while my brother is on a golfing holiday. I am so overwhelmed by her generosity.


Our LORD Jesus took breaks. He, the second person of the trinity, needed breaks when He was human. He prayed for God's will before He went to the cross on our behalf.


I mentioned to DH about the cruise, last night, and he was not happy with the idea. Today he has forgotten about it. My prayer partner this morning said to make plans to go and figure out who will take care of DH and don't mention it again. DH probably doesn't realize he needs care--reminders to eat, take his pill, etc. Friends, please pray that someone or several people will come forward to offer respite time for me.


I am writing a paper on prayer for my current counseling class and really concentrating on being WITH our LORD and also praying for others. I ask friends, How can I pray for you? You now know one thing you can pray about for me now--respite arrangements. This is my leap year request.


DH is out in the backyard
mowing the lawn now.
So glad he can still do this
on his riding lawn mower.
The dog and I watched
from the porch
and then I clapped.

Thursday, February 23, 2012

Saga Twenty-Two

Sally and I have been to two Alzheimer workshops in February--both held at her church. Our husbands hang out at our home while we attend such events. We made mistakes for the first workshop as I reported in the February 13th blog below; my husband didn't have paper on his clipboard reminding him of where we were and so both Sally and I got phone calls during the workshop from our husbands. My husband didn't understand about lunch. I had instructed him to cook pizza for the husbands, but that lunch never happened.

The morning of Valentine's Day the husbands again hung out at our home. Sally and I attended a lady's group that morning where I spoke briefly (one of my raps).  One of Sally's friends was there and reported some adorable gossip about Jake and DH. It seems a husband without Alzheimer's had sat between both of our husbands at the picnic for Sally's January birthday party. Both of our husbands went on and on about what great wives we are but both husbands couldn't remember our names! We chuckled at this story we received quite by accident on Valentine's Day. Then we went to our monthly Alzheimer's support group in Plant City. Jake knows it is at First Baptist, but my husband knows it is an Alzheimer's meeting. In the evening we celebrated Valentine's Day together by going out to the Olive Garden. We wives are in the habit now of ordering for our husbands and the men seem so happy to be friends.

So when the second workshop happened on Tuesday, both husbands had lunches we made for them by us wives. The day's happenings were on my husband's clipboard. It worked out so much better. Jake didn't know what the event was, but DH did know it was an Alzheimer's event.

At the workshop this week we received a fresh approach. The church's parish nurse contacted Annetta Delinger (http://www.karenboerger.com/) and Karen Boerger (http://www.annettadelinger.com/), speakers and Caregivers Advocates from Ohio, and authors of Joyspiration for Caregivers, Blessings and Prayers for Those with Cancer, Blessings and Prayers for Caregivers, several related products. I won Blessings and Prayers for Caregivers as pictured here. Sally bought all the books with several for gifts for relatives with cancer. I went to the first web site above (Karen's) and subscribed to their Nuggets of Hope newsletter. They can be reached at Caring Hearts Ministry, 800 Rosedale Road, Irwin, Ohio 43029.

The first session led by Karen started with emotions of a caregiver such as anger, guilt, and loneliness. Karen has been a caregiver six times over and knew what she was talking about. At our round table we were able to discuss some of these emotions as well as peace and joy.

Annette followed up with clever packages of ways to help the caregiver.
  • Gifts of Encouragement. Leave messages on their answering machine or cell phone. Have matching prayer mugs.
  • Gifts to De-stress. CD, tea, bubble wrap to pop, a journal to give the caregiver, stress ball, clay, lavender, and something for exercise. Respite time.
  • Gifts of Food. I didn't write these down but they included nuts, frozen grapes, and dark chocolate I believe.
  • Gifts of Words. How are you really? How can I support you the best? Do you want company today?
  • Gifts of Organization. Create a coping journal that includes questions for the doctor, medications. Have a "love shower" for a caregiver--maybe change air filters and fire alarm batteries for them, or work in their yard. 
  • Gifts for Long Distance Caregiving.  Have frozen dinners delivered. Cards that say things like I will be handling all your problems. Signed, God.
This workshop involved the participants in very creative ways. The two speakers have other workshops they put on. Ours was only three hours which included lunch by the church.

About Sally and Jake's church. Both times volunteers provided delicious lunches for the participants. We also attend a senior's group there about once a month. We are starting to get acquainted.

I must mention that our own church is very supportive of my husband and myself. This week we went to dinner with an elder and his wife. DH was so funny in our conversation and this couple didn't seem to mind it when he kept repeating himself.

These are good days to enjoy and the clipboard is working well for when I am gone from the house. How fortunate we are!

Thank you, LORD, for Sally and Jake and for others who share our life.

Sunday, February 19, 2012

Alzheimer's Disease Took a Great President

Click on this link. Ronald Reagan's Church's Tribute  I have been to this church in Bel Air, California, before this tribute was made. Will that church mention him today in their worship service?

We celebrate Presidents Day this year on Monday, Febuary 20th. Or do we? Today's Sunday Tampa Tribune doesn't mention it on coming events for the week. Public schools in our county no longer declare it a holiday--I have a substitute job Feb. 20th. We are off  for one day for Plant City's Strawberry Festival, but Presidents Day has gone the way of snail mail, thank you notes, hospitality and respect for elders and leaders. Oh, but the stores know it is Presidents Day!!!

With all the news about candidates, I pause to reflect on a truly great president, Ronald Reagan. Republicans and Democrats applauded his leadership. I wonder about what the world would have been like without his presidency and what he would have contributed after that presidency had he not had Alzheimer's. I respect his honesty in telling us he had Alzheimer's (see this speech on 2/6/11 of this blog).  I admire how Nancy Reagan bravely stood by him throughout his illness. Her devotion is an inspiration for all of us caregivers.

Monday, February 13, 2012

Is Alzheimer's Hereditary?

Recently Sally and I went to a workshop on Spirituality and Alzheimer’s sponsored by our local Alzheimer’s Association. Jake and DH stayed at our home. I forgot to leave a schedule on the clipboard at home for where we were and when we would be home. Now between our two ALZ husbands, the answer for where we wives were was not contained in their memory. It wasn’t surprising, then, that both of us, forgetting to turn off our cell phones, got phone calls from our hubbies in the middle of the workshop!

At the workshop one of the speakers, a medical doctor, talked about Apolipoprotein E, better known as ApoE 2, ApoEe and ApoE4 and the hereditary connection for those who have that ApoE4 gene.

I researched and found out that 15% of us have ApoE4 in our blood. Furthermore according to this link on “Why ApoE4 Increases Alzheimer’s Risk”:

People who inherit the E4 gene from one parent are three times more likely than average to develop Alzheimer’s; those who get the gene from both parents have a tenfold risk of developing the disease.
 This information came out in April of 2007 in The Journal of Neuroscience and hence the medical community has known this statistic.

There are two types of Alzheimer’s now that have a genetic component—early-onset and late-onset. I first had the impression that only the first one of them is inherited, but they both do. Let me explain.

Early-Onset Alzheimer’s Disease strikes people from age 30 to 60 and in most cases this is inherited and known as FAD (familial Alzheimer’s disease). The AD fact sheet punished here states “A child whose mother or father carries a genetic mutation for FAD has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child almost surely will develop FAD.”

Late-Onset Alzheimer’s Disease comes after age 60 and over age 85 50% may have dementia. 40 % of people who have that ApoE4 are likely to get Late Onset Alzheimer’s. See link. My husband was 71 when his AD was first diagnosed with 22 out of 30 on his Mini-Mental State Exam; I think it may have been evident when he was 70 but he scored 29 out of 30 at that time. My husband worked for the first six months after this discovery as I reported early in this blog, and is still in stage one of the disease, taking advantage of Exelon and Namenda and coconut oil and everything else I can give him including Ribonucleic Acid, D3 and turmeric.

The causes of Late-Onset are not as predictable and may include a combination of lifestyle, environmental as well as genetic factors. Many countries with different environments and food patterns do not have the epidemic of Alzheimer’s as we have. My husband's parents did not have Alzheimer’s. Researchers with GWAS (genome-wide association study) are discovering other genes that may include a risk for Alzheimer's.

My husband has not only Alzheimer’s but also Vascular Dementia. Heart trouble and diabetes can result in Vascular Dementia, but Vascular Dementia is not inherited. My husband has had a heart attack and also developed type-two diabetes with his heart attack in 2004. Perhaps we can avoid heart disease and late developing diabetes with our lifestyle choices and hence not get Vascular Dementia. This is why I am dieting now and taking measures for my own health. My health will help me continue to be my husband’s caregiver, since no insurance provision can now be purchased for his long-term nursing home care and I will be the one to offer this long-term care.

Epigenetics is a new science. The thought is that certain genes can be switched on or switched off by “environmental factors, such as exercise, diet, chemicals, or smoking, to which an individual may be exposed, even in the womb.” See this Link. One family member may get Alzheimer’s and another may not. My late father had late-developing diabetes and then strokes; his brother, my late uncle, did have both heart trouble and Alzheimer’s. My uncle was probably healthier than his brother, my father, but nonetheless he had some form of dementia at the end.

How does Alzheimer’s spread in the brain? New studies reveal that it is not a virus or bacteria that is spreading Alzheimer's in the brain, but distorted protein know as tau. In an article in The New York Times early this month  the answer came from studies at Columbia and Harvard that “it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.”   See article.

What should you do? See if you have that ApoE4 gene and take care of your health so basically you don’t switch on or off an inherited disease. New interventions and treatments are coming down the pike and the government is putting more into research for this disease. Maybe you can get in on research for the National Cell Repository for Alzheimer’s Disease by volunteering your DNA. See www.cnrad.org or call 1-800-526-2839. Another tip for young people is be sure you get long-term nursing home insurance before you might be diagnosed with AD because once diagnosed you cannot get that insurance. I have that insurance because I was not diagnosed with AD, but we can't get it for my husband.

How can you manage with these uncertainties? Prayer and waiting on the LORD. This life if not all; God is absolutely there for the patient and the caregiver who fear the LORD.


But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love to deliver them from death and keep them alive in famine. We wait in hope for the LORD; he is our help and our shield. Psalm 33:18-20 NIV Translation

Wednesday, February 8, 2012

The Fear of a Caregiver

Those of us who are caregivers may have a whole lot to fear: our loved one may wander; hallucinations that result in violence; difficulties communicating; how it will all end; will our money run out; will our loved one continue to trust us or will they become suspicious; will they tell us if they have a pain; will they leave the stove on; will they leave the house naked; will I be asleep when something happens; end-of-life decisions when they can no longer swallow; will the loved one accept outside help so we can get a break; what if I can't take care of the loved one and how can I afford nursing home care; how can I maintain our home when it used to take two to do that. The worries are endless.

So the Obama administration has a new health care initiative for Alzheimer's that promises:
"In addition, the Fiscal Year 2013 budget to be released next week will include $80 million dollars in new research funding," US Department of Health and Human Services Secretary Kathleen Sebelius said today during a media briefing at the National Press Club. "Altogether, the Fiscal Years 2012 and 2013 investments total $130 million in new Alzheimer's research funding over 2 years, more than a 25% increase over the current annual Alzheimer's research investment," she said. The initiative also includes an additional $26 million in caregiver support, provider education, public awareness, and improvements in data infrastructure." See link.
How does the Alzheimer's and caregiver support get funneled down? How comforting is this?

What is comforting is the words that I read in my Bible yesterday from Psalm 31:1-7, NIV.

LORD, I have gone to you for safety;
Don't let me ever be put to shame.
Save me, because you do what is right.
Pay attention to me.
Come quickly to help me.
Be the rock I go to for safety.
Be the strong fort that saves me;
You are my rock and my fort.
Lead me and guide me for the honor of your name.
Free me from the trap that is set for me.
You are my place of safety.
Into your hands I commit my very life.
LORD, set me free. You are my faithful God.
I hate those who worship worthless statues of gods.
I trust in the LORD.
I will be glad and full of joy because you love me.
You saw that I was hurting.
You took note of my great pain.

Wednesday, February 1, 2012

Dr. Mary Newport's Coconut Oil Video

Click on Christian Broadcasting Network  to hear Steve and Mary Newport interviewed about the benefits of coconut oil. I do believe coconut oil has helped my husband and have written about how I use it previously.

Currently it is used as Coconut Fudge, half coconut oil and half chocolate chips, both melted together and frozen in ice cube trays and stored the the refrigerator; then my husband is given four cubes a day. He got tired of having coconut oil in oatmeal.