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.

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.

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.

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

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.

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.

Book Review: The Best Friends--Part Three

See Parts One and Two Below

The authors of this book offer suggestions to the caregiver: 

• Maintain a sense of humor. This is why I put the last post on humor in.
• Seek out someone to confide in. I want to scream sometimes. I wanted to cry yesterday. A woman at church whose mother went through Alzheimer's is now my confidant. I will talk to her today if she is at church. The fact that she is covenanted to be there for me makes me feel my church is working for me now.
• Set realistic expectations. "How much money can I spend on caring for my loved one without jeopardizing my family's financial well-being?" (p. 198) Our finances are pretty precarious. I balance entertaining my husband which costs money but keeps a normal life going vs. paying off credit cards so I can stay home and take care of him when there is no other option. I know that day is approaching and may be here sooner than I think.
• Develop strategies for handling unhelpful advice. This hurts so much. People just mean well, but sometimes they just don't know my tears and fear. The authors suggest saying things like Thanks for your concern. I think of Christ's attitude: Father forgive them, and pour my heart out in prayer. In fact, I wish many people were praying for us. People are busy. I realize I need to pray for them and have started doing that. My little world is not all that breaks my Savior's heart.
• Keep up contact with the outside world. Caregivers "should try to make at least one call each week to a friend that they have been too busy to see or talk to. Also, many caregivers find new friends through support groups." (p. 198) This blog is contact with the outside world, and I do not know who reads it. I have family and friends who say they don't read blogs, yet do they realize that calling on the phone in the middle of the night just won't work? That so many of us caregivers just have to blog. Do they understand?
• Modify or change the living environment. Our home works for us, but the authors ask if it is hard to maintain. Yes it is. 
• Listen to one's body. I am dieting now and have been to the gym. So far my slow weight loss has resulted in more energy.  
• Be good to oneself. They say give yourself presents. I spent under $50 this month on clothes on sale, and it did lift my spirits.
• Plan ahead. I do not have a workable plan should I predecease my husband. However, Sally and I think we might be able to provide respite time for each other while both of us are alive.
• Forgive others and oneself. The authors write, "Alzheimer's disease finds people at their best and at their worst." Among the caregiving community I read about selfish relatives, and why doesn's so and so call or help, etc. Yesterday we went to Sally's birthday party. I admire her for living every day to its fullest. I admire that not only was her own son and family there, but also three stepchildren (children of her Alzheimer's husband by a previous wife) were at her party. I wish I had that kind of local family support. I try to not go there in my thoughts, because I can only control myself. This is why I rush to the LORD in prayer for others and their needs:   LORD forgive me for allowing self-pity at times and for expecting family and friends to behave so and so.  Thanks for the times they do come through for my husband and myself. Thanks for cousins Linda and Ron who from the other end of the country actually read my blog.
• Keep a diary or notes of caregiving experiences. So much happened yesterday. I did not slept well last night.DH was angry with me, and then forgot he was angry with me. Repeatedly his short-term memory crept in. I kept a lid on it all and wanted to scream and cry by the end of the day. One should award me an academy award for being so pleasant yesterday. I wrote more here, but somehow the posting of my difficult day got erased. I do indeed need to take heed to being "my own best friend" along with my husband's. And there is a FRIEND who sticks closer than a brother.

In the movie "War Horse" which we saw last night, a main character walks toward the injured horse on the battle field while quoting Psalm 23: Ye, though I walk through the valley of the shadow of death. . . . Today is the Sabbath. I so need a day of rest and worship.

Humor

This "Summary of Life" was passed on to me by e-mail by my my MN friend Barb.

GREAT TRUTHS THAT LITTLE CHILDREN HAVE LEARNED

1) No matter how hard you try, you can't baptize cats..
2) When your Mom is mad at your Dad, don't let her brush your hair.
3) If your sister hits you, don't hit her back. They always catch the second person.
4) Never ask your 3-year old brother to hold a tomato.
5) You can't trust dogs to watch your food..
6) Don't sneeze when someone is cutting your hair..
7) Never hold a Dust-Buster and a cat at the same time.
8) You can't hide a piece of broccoli in a glass of milk.
9) Don't wear polka-dot underwear under white shorts.
10) The best place to be when you're sad is Grandma's lap.

GREAT TRUTHS THAT ADULTS HAVE LEARNED

1) Raising teenagers is like nailing jelly to a tree.
2) Wrinkles don't hurt.
3) Families are like fudge...mostly sweet, with a few nuts.
4) Today's mighty oak is just yesterday's nut that held its ground.
5) Laughing is good exercise. It's like jogging on the inside.
6) Middle age is when you choose your cereal for the fiber, not the toy.

GREAT TRUTHS ABOUT GROWING OLD

1) Growing old is mandatory; growing up is optional...
2) Forget the health food. I need all the preservatives I can get.
3) When you fall down, you wonder what else you can do while you're down there.
4) You're getting old when you get the same sensation from a rocking chair that you once got from a roller coaster.
5) It's frustrating when you know all the answers but nobody bothers to ask you the questions...
6) Time may be a great healer, but it's a lousy beautician
7) Wisdom comes with age, but sometimes age comes alone.

THE FOUR STAGES OF LIFE

1) You believe in Santa Claus.

2) You don't believe in Santa Claus.
3) You are Santa Claus..
4) You look like Santa Claus.

SUCCESS

At age 4 success is . . . . Not piddling in your pants.
At age 12 success is . . . Having friends.
At age 17 success is . .   Having a driver's license.
At age 35 success is . . . Having money.
At age 50 success is . . . Having money.
At age 70 success is . . . Having a drivers license.
At age 75 success is . . . Having friends.
At age 80 success is . . . Not piddling in your pants.

Finally, Joe put this video song on his blog. http://www.tomrush.com./video_remember.html Joe who has mixed dementia thought it was hysterical--it is. The song doesn't end because Tom Rush couldn't remember how it ends.

Our humor. My husband forgot his false teeth when we took our car in for repairs yesterday morning. We had breakfast at a nearby place--he had yogurt and gummed a muffin. He said, "Carol, don't put this [fact] on Facebook." Oh my! He has no idea about this blog.

Book Review: The Best Friends--Part Two "The Knack"

Bob DeMarco from the Alzheimer's Reading Room writes:  "Television is a good baby sitting tool, 

it is not a good Alzheimer's caregiving tool.  In fact, too much TV will bring on the "dull"  faster than a speeding  bullet."  

I just never know how to involve my husband in "meaningful" activities.  "Wouldn't it be just great if he could do puzzles!" people suggest.  "Can you keep him busy?" you ask.  He watches old movies most of the time. This is what he wants to do. I am concerned, but yet trying to work to pay off bills for when I have to stay home to take care of him. He loves being retired and with our dog.

All I do know is that he is contented and I realize as a caregiver I must be doing somethings correctly--that I have a "knack". He loves it when I call him while I am away, but doesn not seem depressed at all.

It's like adopting a special needs child but not letting them know they are deficient but showering them with love. Perhaps there is no need to educate my husband on what is coming down the pike for him, that he should be doing puzzles. Ten years ago I knew very little about dementia and so did he. When he was diagnosed with dementia in December of 2008, he just said he felt fine. We do compensate for his short-term memory with a daily clipboard and regularly talking about what is happening for that day. He has changed, but is not able to do any more than what he is doing. Next week we are trying to incorporate exercise at the gym, however.

The Knack, according to the authors, is a whole set of caregiving behaviors.

Caregivers who successfully learn the Best Friends model of care will develop knack, or the ability to do something easily, and will learn many tricks along the way. Knack for families is all about resilience, about surviving the disease, about providing good care, and about enjoying moments with the person. It is about the quality of life, for the person and his or her loved ones. It is about working through the pain. One door is closing and another is opening. pp. 101-102

They say elements of knack include: being well-informed, having empathy, respecting the basic rights of the person, maintaining caregiving integrity, employing finesse, knowing it is easier to get forgiveness than to get permission, using common sense, communicating skillfully, maintaining optimism, setting realistic expectations, using humor, employing spontaneity, maintaining patience, developing flexibility, staying focused, being nonjudgmental, valuing the moment, maintaining self-confidence, using cueing tied to the life story, taking care of oneself, and planning ahead.

Take the area of communicating skillfully. This means one idea at a time. No pronouns to referred to something or someone in the previous sentence.

                                                               

Take valuing the moment. I have been working all week and have things to do today, Saturday. He doesn't want to come today, and is content to stay home. So we went to dinner last night. He loved it. At dinner he told me he loves me, loves the restaurant and loves his dinner which he slowly ate. I told him that I loved being with him. I didn't have a smart phone to play with, I don't text, I was there for him. I praised the LORD in my heart for this great date knowing what may come down the road with Alzheimer's. I valued the moment.

I think it comes down to having "the knack" as we are in Scripture and growing in the fruit of the spirit mentioned in Galatians 5:

love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

Self-control is really needed in Alzheimer's care. We can't always control the anger or moods of our loved one, but with God's help we can grow in self-control. Speaking of self-control, I am soon off to my 7 am Weight Watcher's meeting and then on to a Toastmaster training event.

Book Review: The Best Friends Approach to Alzheimer's Care--Part One

“What a grand thing, to be loved! What a grander thing still, to love!” ― Victor Hugo

Here is a book with so much wisdom for the caregiver that it needs three posts in my opinion. Sally put me on to The Best Friends Approach to Alzheimer's Care by Virginia Bewll and David Troxel. Sally has started using these principles with Jake. Today's post will deal with emotions that AD patients have. I will apply it to DH for the most part. Two more posts will follow from this book.

Chapter one insightfully lists common emotions and feelings of persons with AD.

1. Loss. It took some time for my husband to decide to give up driving. I was glad that he decided, even though he had passed the Alzheimer's driving test for two years in a role. When the driving privilege was abuptly taken from Jake, he experienced a huge loss. Our husbands want meaningful roles. I still look to my husband as a protector of the family. He checks the doors are locked at home and likes to accompany me whenever he can. The other night the dog barked at the smoke detectors making noises. My husband took great pride in handling this noise, taking down the batteries and planning to replace them.
2. Isolation and loneliness. It means so much to our husbands to be together. Sally and I both substituted one day in the public schools and Jake came to our house and spent the day with my husband. Next week DH will go to Jake's house while Sally and I are out and about. Jake helped DH with the yard and my hubby will help Jake with painting a fence next week and Sally at Jake's home. I am also concentrating on being WITH my husband as I wrote earlier on this blog on 9/29/11.
3. Sadness. Both DH and Jake are not knowledgeable about Alzheimer's, so their sadness is not amplified by what is coming in the future. However, Sally and I are often sad about the situation.
4. Confusion. I get asked every morning at least four times where I am going. Sometimes I say, Check the clipboard, where I have printed the schedule for the day. My husband has started to get confused about what word to use, a further deterioration.
5. Worry, Axiety and Frustration. We have one large TV in the family room where DH watches movies for most of the day. He has a large collection of cassettes and DVDs and also finds interesting material on cable. This large TV has the only box (of our three TV sets) where we can arrange to tape programs in the future. Last night I wanted to see the program where Dr. Mary Newport was interviewed; DH was very frustrated when I didn't seem to get him back to the right channel. In fact, in his anger and frustration he decided to go to bed angry. He wouldn't take his pills. He wouldn't pray. He was livid that I messed up his TV viewing. This was not intentional on my part because I saw that he was on the news and returned to the news; by this time he thought I had lost some other program he dearly wanted to see. 
6. Fear and Paranoia. People with Alzheimer's disease often look for an explanation about what is happening to them. (p. 16) One time DH asked me if I were having an affair and of course I assured him that I wasn't and would not have one. He was lonely and this was before I started being WITH him intentionally. (Early on in the disease I started withdrawing emotionally from him, thinking that I would again become a widow as I had in the past.)
7. Embarrassment. The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer. (p. 17) It is best to not ask them any questions. Asking their opinion might help at times, but they can't even decide what to eat on the menu in a restaurant.

The approach written about in this book lets us caregivers know that these feelings are normal. Our loving understanding can minimize these normal feelings of a person with dementia/AD. The best way I can love husband now is letting his steady personality change and understanding that these feelings are normal and being WITH him through better and worse.