Book Review: Caresharing

Marty Richards dedicates this book to her Aunt Toni, who died at 102 1/2 as I [Richards] was writing this book. She indeed has been, and continues to be, my teacher and "the wind beneath my wings." This book came highly recommended to me by a social media friend who is in the field of caring for seniors.

Richards encourages us to share the caregiving journey with others and considers it a spiritual journey where whatever your faith you ponder questions about life's meaning and purpose (p. xiii).

As in another book I reviewed on this blog she uses the term "carer", but she adds "care receiver" and "care partner" to the mix. She says this journey is a dance where there are three moves:

1. Offer help
2. Ask for help
3. Receive help

She explores many emotions and growth areas that I ponder in my Christian faith: sadness, anger, guilt, fear,  failure of others, failure of self, forgiveness (a whole chapter on this one), coping, grief, and hope. She explores family expectations and roles and writes: all generations are affected when someone in the family needs care (p. 69).  She is reaching across different faiths, and so does not use Scripture as I would have done (and will do on my seminary counseling dissertation). It's as if all the issues I have addressed on this blog or may need to address are in her book.

Richards helps me want to know my husband more and not just the disease that has him. I woke up this morning and interacted with him before we even got out of bed; finally he said to turn over--he wanted a few more winks of sleep! I want all the interaction I can have with him at this stage and it is important. I am not working outside the home today and I am a lovegiver today, not just a home economist. I want to validate his feelings and learn his stories. Relating to him is just as important as all my other "to dos", some of which others can do for us. And, recently I have seen what others can do with our neighbor Kenny and Wayne who stepped up to the plate to mow our large lawns; also I now enjoy texting support from others in my church--they pray for us and I pray for them. They are caresharing.

Build on what your care partner can still do, advises Richards. Affirm their value. Ask yourself what is going on with difficult behaviors. Connect soul to soul. Even though I feel so busy much of the time, I read Scripture with my husband most mornings now, as a result of this book. I have had a habit in recent years of going through the whole Bible every year, but didn't think hubby would be able to comprehend this discipline. Instead we read from the Psalms and Proverbs and he often prays. Kenny prayed yesterday before I left to substitute teach.

On page 207 she has a hope inventory for areas of your life--the world around us, our work life, our home life, our relationships, our physical health and our sense of self-expression. She asks us to check off if we feel hopeful or hopeless in each category. WHERE DO WE NEED A NEW PERSPECTIVE on HOPE? Write an ethical will in the Orthodox Jewish tradition is one suggestion. Write a spiritual autobiography (I did that with Getting Off the Niceness Treadmill). She offers other strategies for our senior years as well.

You can get Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability, new or used, on Amazon HERE. It is well worth reading and very economic when purchased used. My used book was withdrawn from the New York Public Library and I wonder why this hardly used book was withdrawn, but am grateful for this book and its insights. I will read this book again in my journey with my husband's dementia, and practice the dance she encourages.

My Amazon review was just published HERE.

Book Review: The Peacemaker

It has been said that Alzheimer's brings out the best and the worst in people. Often I read on Alzheimer's blogs about conflict between family members about care for elderly parents. People in many caregiving situations read this blog and so this issue may come up in families who are seeing both the best and the worst in one another.

I am in my final classes for a seminary counseling degree and one of the required reading books, The Peacemaker: A Biblical Guide to Resolving Personal Conflict by Ken Sande, had a very insightful story. Now this scenario in the book I am quoting in no way parallels my situation, but is illustrative of both the best and worst in people and how Scripture and wise counsel can help the Christians who face such caregiving decisions. Ken Sande writes:

When a person earnestly pursues the conciliation responses to conflict, there is a greater likelihood that he or she will eventually see reconciliation. . . . The different responses to conflict and their association dynamics were dramatically revealed in the first family conflict I conciliated. I was asked to help seven adult brothers and sisters settle a guardianship dispute over whether they should keep their elderly mother in her home or place her in a retirement center. Five of the siblings were doing all they could to escape from the situation, either  by pretending that a conflict did not exist or by refusing to meet with the others to talk about it. The other two attacked each other intensely and frequently, slandering one another to family and friends and fighting in court to obtain control through legal guardianship.

The first step in resolving the dispute was to help the parties change the way they had been responding to the situation. The five siblings who had been trying to escape from the problem quickly saw the benefits of mediation and agreed to meet together. The other two sisters grudgingly consented to mediation, but they continued to attack each other during our meetings, accusing each other of improper motives and demanding opposing solutions. Our investment of time and energy was producing no results, and relationships were suffering further damage.

I finally asked to talk with the two sisters in private to help them discuss the personal offenses that were obviously fueling their quarrel. Putting the guardianship issue aside for a moment, I helped them to examine their attitudes and behavior toward each other. As we studied a few relevant Bible passages, the Lord began to work in their hearts. After about thirty minutes, the real cause of the conflict finally came to the surface.  Almost twenty years earlier, one of the women had said something that deeply hurt the other one. The offended sister had tried to pretend that she was not hurt, but she could not help brooding over the insult and their relationship was steadily poisoned. Consequently, they opposed each other in everything, even if it involved their mother’s care. 

As we continued to talk about their relationship, they began to deal honestly with their feelings and actions. They saw how they had been dishonoring God and hurting other people. As God opened their hearts, they confessed their sins and forgave each other. With tears in their eyes, they embraced each other for the first time in twenty years. They soon joined their brothers and sister and explained what had happened. Within five minutes, all seven children agreed that their mother would be happier in her own home, and in another fifteen minutes they negotiated a schedule for her care.  As you can imagine, when they told her the news that evening, the reconciliation of her children brought her even more joy than the  decision about her living arrangement (pp. 23, 24).

Now mediation with someone else might be needed with placement of an Alzheimer's loved one. We can grow in grace and in the knowledge of our faith in the process. The LORD doesn't waste any of our trials, and unless we choose to become bitter and discouraged, He will be there and turn our sorrows into joy and perhaps through mediation and of course through meditation on His Word.

I have loved the process of taking my seminary counseling classes since 2006 and can see the light at the end of the tunnel. One project was my book, Getting Off the Niceness Treadmill. Other papers have been on a topic related to Alzheimer's. I will be starting the dissertation some time in 2013, LORD willing. It has been suggested that I write my dissertation on being an Alzheimer's caregiver. 150 pages! Oh no! More stress on top of being a caregiver and on top of reorganizing the home for caregiving! However, with reading such wonderful resources as The Peacemaker there will be much to share in that dissertation.

Get the book, folks. Such help for all kinds of thorny issues.

"When the Parent Becomes the Child"



From Pinterest Group Alzheimer's Board

Greg Asimkaupoulos is a pastor who writes thoughtful and funny poems. He gave me permission to post this poem here on this blog and another thoughtful one follows.

When the Parent Becomes the Child

by Greg Asimakoupoulos
July 13, 2012

When I was but a boy of three,
my mother took good care of me.
She cooked my food and washed my clothes
and dressed me for the day.

She helped me tie my laces tight

and tucked me in my bed at night.

She put my needs ahead of hers

and never once complained.

When I fell down or lost my way,
my mom was never far away.
She recognized my helpless state
and made me feel secure.

But now my mom's "the child" in need

who struggles daily to succeed

at little tasks that tax a mind

that frequently forgets.

She needs my help to get around
or look for things until they?re found.
And when her eyes betray her fear,
I hold her trembling hand.

At times her needs can drain me dry,

but when I start complaining why?

I think back to my childhood

and how she cared for me.

Originally published at http://www.partialobserver.com/ . Used by permission.

Learn as You Go or Prepare Ahead?

“It is best to learn as we go, not as we have learned.”

― Anonymous

Some things I have learned as we take this Alzheimer's journey:

• My pastor and trusted friends can't really always advise me. They can pray.
• My husband's children don't know what to say. I think they admire our journey from a distance and certainly hope they remember us in prayer.
• My husband has a VERY poor sense of time, not just short-term memory. Because he knows this, he regularly checks with me.
• My husband enjoys his life. He lives one moment at a time. This includes seeing movies repeatedly. His favorites include "The Titanic", "Walk the Line", "Fireproof" and "Pearl Harbor". Old movies are best because the new ones have too much action and intrigue often to follow.
• My husband loves me. We tell each other this often. I am with him in his journey.
• I learned to accept sundowning episodes and the anger of my husband because of the missing neurons in his hippocampus. When he called me an A-Hole the other day, I was calm. Later I told him what he had said and he apologized.  We marry a man who doesn't swear, and then they get Alzheimer's and swear! This is God's lesson to me to rely on Him for MY patience.
• There is a wonderful blogger network out there. We encourage each other.
• Provide a lot of clues for hubby to manage on his own when I am gone.
• Get in a support group. Sally and I are in one that meets monthly. Hubby and I are in one that meets monthly.
• Scripture keeps speaking to me with my caregiver's stress.
• Have an Alzheimer's driving test. Hubby will have his second one Oct. 28th.

On the other hand, there are some things I have to prepare for:

• My own health. I got into emotional eating when I realized that he has Alzheimer's. I need to prepare for the Alzheimer's walk on Oct. 29th also and appreciate those who have contributed. You can do so on line. Great encouragement to me and "Ann", my Alzheimer's Association support group facilitator. Her team that I am no needs to raise more money. Click on the link at the top right. I have  thanked people who contribute in person or by e-mail. 
• Simplifying our life. Keep things in the same spot that my husband is used to. Use priorities as in Staci Eastin's book reviewed here.
• Get credit cards paid off while I can work extra jobs.
• What I can't prepare for is in the LORD's hands. Questions remain such as what if I can't take care of hubby in the future. Yet the Lord is my great Caregiver.

Worry weighs a person down;

an encouraging word cheers a person up.

Proverbs 12:25 NLT

Thanks to my Associate Pastor who e-mail me that he and his wife are praying. This was an encouraging word today and to his wife and others who contributed to the Walk or contribute by prayer.

Who Keeps Promises?

This issue has been on the news this week. I addressed this with Jan's Story review on this blog on July 1 below.

Pat Robertson Would Not Keep Promises

Robert McQuilken Keeps Promises

When I wrote about Jan's Story, a comment was made that led me to McQuilken's book shown above. He writes on p. 23:

I have been startled by the response to the announcement of my resignation. Husbands and wives renewing marriage vows, pastors telling the story to their people. It was a mystery to me, until a distinguished oncologist, who lives constantly with dying people, told me, "Almost all women stand by their men; very few men stand by their women." Perhaps people sensed this contemporary tragedy and somehow were helped by a simple choice I considered the only option.

LORD, that you for my husband. I want to show love to him all my days, no matter how difficult it becomes. Help men and women caregivers who come across this blog to also keep those promises. Help me live longer than he does, if that is your will. Amen.

Just a Word: Friends Encounter Alzheimer's by Rose Lamatt

Leaving two grown kids and an inattentive husband, author Rose walked out of  her marriage and her agoraphobia to a life with a new roommate, golfer Carol Beinbrink. Life is good for the two friends, until a WORD comes into their life. That word is Alzheimer's. Carol is diagnosed with Just a Word--Alzheimer's. 

I found out about this Florida author on The Alzheimer's Reading Room when Bob DeMarco highly reviewed her book . The true story reads like a well-crafted novel as Rose and Carol wrestle with the inevitable stages of Alzheimer's, the stages of grief and the death of Carol.   

I have now the privilege of being a Facebook friend of Rose and she messaged me that the book would be depressing for me. Yes and no. Yes, it was depressing because this is a path that I need to go down with my husband. But NO, not depressing, because it is so well-written and I am cheering for the progress of Rose in stepping out of panic attacks she had in her earlier life. I cheer the bold caregiver and Alzheimer's advocate she becomes by the end of the book. Not depressing because I realize that I can go through this process also. Rose did. With God's help, blogging friends, church family and the Alzheimer's support group I can go through this stress and challenge.

Here are some quotes from the book and my comments following the quote:

• We don't talk of it and keep an "up" feeling between us. p. 45 My husband and I are like that and to some degree we just continue to live each day as happy as we can.  (However, we have been able to be honest about this disease in the past months since attending Alzheimer's Association events together.)
• I see her embarrassment when she stops mid sentence in conversation, not able to find the right word. (p. 57) Here is some dialogue I had with DH recently, not as serious as Rose and Carol:

I forgot a document at home and DH says,

"Lady, you take the cake and I'm the one with the . . . What is it?"

Me:  "Short-term memory." We go back home to get the document.

DH: "I will give you one more chance. . . . [To our dog] What are

we going to do with mama's memory?"

• Next to a chair I place my hands on her shoulders and set her down, then sing, "Oh, we ain't got a barrel of money." (p. 105) I have mentioned before on this blog that this song, "Side by Side", is also our song--it's so upbeat and really anyone with a chronic illness needs a loved one to be by their side.
• I like how Rose quotes the saying, "It's much better to give than to receive." (p. 140)  More than a saying it is from Acts 20:35. 

Rose cared for her friend for fourteen years. In the process she really finds herself and she writes,

Being with someone who is dying of Alzheimer's, especially because the disease takes so long, watching the decline is a gift. We watch the person 'undo' their life at a slow rate. We may hate watching it, but in the end, I was happy to go through Carol's Alzheimer's Journey to death. It brought me closer to God than I'd ever been before. (pp. 176, 177) 

Rose, thank you for the realistic

and inspirational story that you weave.

Thanks that you continue to help Alzheimer's patients and their caregivers now as you volunteer and work in an assisted living facilities. Just A Word  is not depressing--it is hopeful as it ends.

Facts and Figures

Compairing deaths in 2000 with deaths in 2006 people died less from heart disease, breast cancer, prostate cancer, stroke than they did from Alzheimer's Disease by 2006.  Of all those causes of death, only deaths from AD were up by 46. 1 % according to the 2010 Alzheimer's Association's report. In those years heart disease deaths went down by 11.5 % ; breast cancer by 2.6 %; prostate cancer by 8.7%; and stroke by 18.2%. I am grateful for all the advances in these diseases, but Alzheimer's has not received a cure unfortunately and Alzheimer's is increasing.

This means more caregivers.

According to the recently released 2011 Alzheimer’s Disease Facts and Figures from the Alzheimer's Association, there are now nearly 15 million Alzheimer’s and dementia caregivers in the United States. This report shows that there are far more Alzheimer’s and dementia caregivers than previously believed. These individuals provided 17 billion hours of unpaid care valued at $202.6 billion. To put this in perspective, if Alzheimer’s and dementia caregivers were the only residents of a single state, it would be the fifth largest state in the country. From Caring News

Sally, Jake, DH and I have been taking a class called "Living a Healthy Life with Chronic Conditions". I think there have been real breakthoughs as the result of this class. My husband and Jake just love joking around . Sally and I are more serious; both of us are working on FlyLady principles to organize our homes for the days/years ahead when we are the caregivers. The facilitators of this class will also follow up on the four of us.

The road we caregivers are on is uncharted. As a spouse, I don't know where this will all end. One day at a time.  Today is good. My husband is mowing the front yard.

Charleston Heston, 1923-2008

Charlton's Last Interview With Wife Lydia 

ABC interviewed the couple (see U-Tube above). V ery special short interview. Charlton said in this interview,  “What can’t be cured must be endured.” Lydia Heston told how she was appalled upon hearing the news. Nancy Reagan called her and offered to talk anytime Lydia needed to talk. The interviewed said so appropriately to Heston, “The problem is not for you, but for those around you.”

At the time Charlton Heston was President of the National Rifle Association for the third term, on August 9, 2002 Heston announced he had the symptoms of Alzheimer’s Disease. A year later Heston stepped down from his NRA Presidency. See here.

Now Heston was famous for these quotes:

• "This doesn’t happen when they use guns." 
• "I’ll give you my gun when you take it from my cold, dead hand."

Charles Heston did live six more years to the age of 84, having been married to wife Lydia for 64 years. He did in fact have Alzheimer’s.

An article came out the day of his announcement in Slate (The New York Times Weekender on line) that asked “Will Charlton Heston Have to Give Up His Guns?” See here. It seems that several states, including California and Oregon, have this requirement for Alzheimer’s patients.



I am not sure how the Heston family handled the gun issue, but the following solutions can work to prevent the AD loved one use guns when deluded or angry.

1. Lock up the guns.

2. Put the ammunition elsewhere.

3. Disable the gun.

Charles Heston acted in the first two epic movies I ever saw, “The Ten Commandments” and “Ben Hur”. He was always handsome with his stature, chiseled face and distinctive voice and always well-regarded. They don’t make ‘em like him anymore and certainly several other California actors have disgraced themselves in recent years.

Arnold and Mel,

        Who will be there for you like Lydia was for Charles and Nancy was for Ronnie if you get dementia? Just wondering.

                                                       Carol

Caregivers

From John 19:25-27 in the New Living Translation:

Standing near the cross were Jesus’ mother and his mother’s sister, Mary (the wife of Clopas), and Mary Magdalene. When Jesus saw his mother standing there beside the disciple he loved, he said to her. “Dear woman, here is your son.” And he said to this disciple, “Here is your mother.” And from then on this disciple took her into his home.

This morning I read this from John. Jesus, on the cross, assigned the care of his mother to a beloved disciple. There you have it--caregiving in Scripture.  In my yearly journey through Scripture I may find more examples of caregiving.

Who has been assigned to us? My husband is assigned to me. One day I want to hear, "Carol, well-done, thou good and faithful servant." This means that without complaining, with thoughtful care and study, I have a charge from the LORD. It doesn't matter that there are kids and grandchildren. It doesn't matter that one day he may have to be put in the "home" if things are too hard for me at home. I am his caregiver for better for worse, until death us do part.

There is a dear lady in my acquaintance who took in a non-relative to care for her because she had no one else to be there for her and she faithfully was a caregiver until that woman passed away. Some years have gone by. Now that lady has beginning dementia. A family is there for her and I pray for her and her family.  She set the pace in this Christian family, didn't she!

Dear LORD,

Help us be the best caregivers we can be

for your glory.

Amen. 

Living In the Moment: Highlights from "Think About It" Conference

Reagan by
Artist

Today while we were looking at booths at the conference artist Toni Trotti painted someone upside down and when he finished it, he turned it so you could see who it was! I blogged about him here on February 6th.

Dr. Arny Bush, from USF, spoke on "So What Is Dementia Anyway". She covered many terms simply and visually. I learned that with Early-Onset dementia (before age 65) the decline can be fast, whereas the older patient can have a slower decline especially if they early receive medicine such as Exelon/Aricept and Namenda as my husband has. At some point these medicines might not matterl. Early Stage such as my husband and Jake have shows functional impairment:

• Difficulty organizing and expressing thoughts (DH or Jake do not seem to have this although we have difficulty expressing things to them simply.)
• Memory loss of recent events (However my husband does remember the crash and our camper. His photo albums on Facebook help him with recent events also.)
• Difficulty with problem solving (DH shows no interest now in carpentry and the last thing he made, a bird feeder, seemed complicated to him.) 
• Difficulty with complex tasks. (His long-term memory helps him still, but he no longer wishes to handle our finances which he turned over to me when I retired from full-time school teaching.)
• Getting lost or misplacing belongings. (Keys, cell phones, yes. Getting lost--no. He used a GPS when we had two cars up until two months ago.)
• Personality changes. (Some days he shows Sundowner's Syndrome and gets very upset. So far I am the only one that has witnessed this.) 

Dr. Bush concluded with what she observes 1) "unconditional love" of the caregivers and 2) "living in the moment" of the patients. I have been so concerned with being proactive, that at times I do not enjoy my husband's humor and each day. I need to focus more on each moment and live in the moment.

Dr. Megan Janke, also from USF,  spoke about "Leisure Activities as a Means of Connection and Stimulation". I feel so good about going camping now with my husband--wonderful for DH and myself and also to share this connection with Sally and Jake. Leisure benefits the caregiver as well. Dr. Janke also passed out 101 Things to Do With a Person With Alzheimer's and I also found in on line here when I came home.

Brad Beatty spoke on stress management. Accept the new normal he said. He wisely told us to bring meaning to the situation and do not ask why but to what ends.

Cudos to Stephanie Thompson of the Florida Gulf Coast Chapter of the Alzheimer's Association and her volunteers for putting on such an outstanding conference for us caregivers for free.

On My Way to Caregiving

My mammogram and sonogram caused great concern yesterday. The last time I was checked was in 2008 and I had to have a biopsy then. Yesterday I saw with my own eyes while I was laying down my right breast on the sonogram. There is a huge mass there. That breast is misshapen now and I just assumed it was from the December 19th crash with the DUI driver. But maybe a lump was there before the crash as my new doctor suspects.

Yes, this breast was a concern in 2008 when it was checked. But I didn't go back to have another check. What have I been doing since 2008? DH helped me write a book--I read it to him. Also since 2008 I have had a growing concern about my husband's dementia, and didn't book yearly mammograms.

According to this link we women over 55 have a greater chance of getting breast cancer. I did not know this before looking it up for this post.

Sue who has been invited to write on this blog, has had breast cancer recently and it was very difficult for her as her husband's Alzheimer's caregiver to take care of him and go through her own procedures. I believe she is over 55. Love you, Sue, and miss seeing you. You had to quit work to take care of DH and now he has cancer also and I heard you haven't told him about his cancer. You don't even have time to get on the computer now and you always told me your faithfully read this blog! Must visit you and have a front porch chat.

Next week that breast with the massive growth, that I just thought was sore and swollen due to seat belt injuries in the crash, will receive a biopsy. Gotta take care of this caregiver ME!

Feb. 2. No biopsy! It was hematoma caused by ruptured blood vessels at the time of the crash! It will get better after time! Thank you LORD!

Husband Is Not the Person I Knew

My name is Dolores, my husband, David has Alzheimer's; he was diagnosed in 2005.   David retired from his job, as a C.P.A.  in 2003.... we were seeing slight signs of Alzheimer's in 2003.....


Most days I do really well as a care taker, but each day/hour  with Alzheimer's is a new experience, and some days are harder than others.  I'm in this for the long haul, so I try to stay as upbeat and positive as possible....it's not always easy or possible.


I read articles from the Reading Room each day, and this article hit home for me.  

Alzheimer's Disease, This is Not the Person I Knew

By Bob DeMarco

Alzheimer's Reading Room

Alzheimer's disease is difficult to comprehend.

Alzheimer's caregivers find it difficult to accept and understand that the new, different, and often bizarre behaviors they experience from a person suffering from Alzheimer's disease are a product of the disease.

The person suffering from Alzheimer's did not choose to go into this new and bizarre world. They are not acting irrational by design or with intent.The Alzheimer’s sufferer is not engaging in these behaviors intentionally. They are engaging in these behaviors because their brain is sick. The result of this sickness is an inability to cope effectively with the world around them.

Once you come to the understanding that these new, hard to accept and deal with behaviors are being caused by Alzheimer's disease you'll lower your own level of stress and anxiety.

This simple understanding leads to more effective Alzheimer's care giving.

Sixth Book Report: Finding Your Way: A Spiritual GPS for Caregivers

Sally and I went to a book signing on October 23rd after our Altzheimer's Association workshop on "Spiritually and Memory Care".  Sandy Lovern is the author of the newly released Finding Your Way: A Spiritual GPS for Caregivers and here she is pictured with Evelyn. I met Sandy and Evelyn when I did a presentation on publishing my book at their writers' group.  I bought Sandy's GPS book and had her autograph it.  Sally bought Sandy's other book Engaged! A Devotional to help a Bride-to-Be Navigate Down the Aisle. Obviously Sandy is fresh on the "how to" book trail.

What does local author Sandy Lovern suggest for the caregiver?  First of all Sandy writes from experience, but generalizes "you" as a caregiver for "Mama" as the loved one being cared for. She does not explore the Alzheimer's patient, nor the Alzheimer's spouse as caregiver. What I received from her book is other insight and I know I will return to what I have underlined in the book.

Bitterness. She writes that "Bitterness will spoil every area of your life. Do what you can for your loved one and rest in that." The Lord has dealt with me on this topic before in other issues of my life.

Martyrdom. "Avoid the martyr syndome like the plague. . . . You can avoid the syndrome by remembering you are the one who has been entrusted by the Lord, to fulfill a promise He made to your loved one, or their partner." In my case, it is my wedding vows--for better, for worse, in sickness and in health.

The Past.  "As your life begins to unravel you will probably catch yourself constantly reaching back into our memories, trying to recapture what once was, and is no more. It's the 'what is no more' that can trip you up. If you don't learn to adapt and accept the new changes in your relationship with your loved one, you could find yourself constantly ensnared by feelings of anger and frustration."

Family. "Surround her with pictures of her loved ones, decorate the walls with drawings from her grandchildren and stimulate her with news of the family." Together we are putting photos on my husband's Facebook page so he can remember events. I noticed that his niece wished him a Happy Birthday on Facebook and wants to know when we will visit them again in Georgia. My husband wants a photo album made--one of my important items on my "to do" list.

Joy. "Do what you can to bring joy to their life, and then go on with yours." DH has a wonderful sense of humor and really he brings joy to my life. I can't close myself off from him. He would be lonely and so would I. Sandy writes, "Special moments are created, they don't just spontaneously occur." I guess that I am going on with my life by taking classes and working while I can. Joy comes when I improve parts of our home also.

Finances. "Your finances will recover over time, but your heart won't if you don't take some time to invest in what is really important." Finances are rough for us. I have been sick this week and have gone to substitute anyway. Whoops! Maybe I am acting like a martyr by working!

God's Word. Sandy writes, "Arm yourself with the Word of God, and wage war over the battlefield of your mind. . . . The Word of God is the only power you have that can override your negative thinking." At the end of her book are Bible verses for each of her chapters.

The Future. "You can sit on the sidelines and watch your loved one's passage into a new life, or you can walk side by side with them until they enter another dimension. The Lord will give you the strength you need to pass your loved one's life into His capable hands. "

This last quote reminds me of an old song, "Side by Side" written in 1925 by Harry Woods.  DH and I like to sing this together:

Oh, we ain't got a barrel of money,
Maybe we're ragged and funny
But we'll travel along
Singing a song
Side by side.

Don't know what's comin' tomorrow

Maybe it's trouble and sorrow

But we'll travel the road

Sharing our load

Side by side.

Through all kinds of weather

What if the sky should fall?

Just as long as we're together,

It doesn't matter at all.

When they've all had their quarrels and parted
We'll be the same as we started
Just a-traveling along
Singing a song
Side by side.

Fifth Book Report: My Mother Has Alzheimer's

I met Linda through the blogging world and her blog is listed at the right.

In her book Linda A. Born wants her mom to take care of her as in the past, but humbly accepts her new role as the caregiver for the mother who has Alzheimer’s. She writes at first of resentment and anger, and then discovers compassion and the Lord’s provision in her walk through her caregiver ministry. I just held on to every word as she has a parallel walk as I have. I would recommend her journey for anyone accepting the suffering as a caregiver as she gently and profoundly takes you through the process.

Her story is both similar and different from mine. I have also learned from Linda's book.

Similarities. Her mother and my husband are both able to feel and to love. I am putting his for her in this quote. “[His] Alzheimer’s had not robber [him] of the ability to love me, and [his] love was a blessing to me still; but [he] could no longer be a dependable counselor or confidante.” (p. 184) I remember when I wrote about that in an earlier blog--about how hard it is for my husband to not remember things about me.

Linda writes “It is actually a great comfort to recognize that our loved ones who suffer dementia are not aware of the pathos of their circumstances.” (p. 23) Yes, Linda, it is great they don’t realize. My husband does not read books or research the Internet now about Alzheimer's as I do. It would upset him, and it has upset me. He is just happy being retired at this point.

I began distancing myself from my husband like she did from her mother. My justification for the earlier distance was that DH didn't understand my logic and talk. However I learned that I should not do this; others in his life might distance themselves, but not me. He will be lonely if I do that.

I am in my marriage for better, for worse, for sickness and health and my husband is also. How I loved when he was still working and when public school teaching became unbearable.  DH said it was okay to retire from public school teaching. He has always been in it for me for better and for worse. That is his commitment to me and my commitment to him.

Linda mentions the photo albums that were important to her mother and my husband wants me to create photo albums for him. Hope to have his done for his Christmas present.

At first got mad with my husband over his laziness. I learned like Linda with her mother, to give that up. Linda writes about “possible scenarios of doom” (p. 210) and I have cried out to God also for these possible senarious.

Linda also mentions problems with over-eating. When I first was dealing with my husband’s dementia, I put on weight—not a smart thing to do and now at my age it is so much harder to lose weight.

Differences. Where Linda has become angry, I have become depressed. I do see other blogging caregivers upset. Both Linda and I ran to the Lord for help, however. She is philosophical when she writes, "Life is full of transitions, and most of us don’t like this fact.” (p. 27)

She is mad that her mom was leaving her through this slow death. I have lost both parents and my first husband—but not by the slow painful death. “I suffered all the negative emotions of anger, resentment, fear, and doubt; and about the only thing I did right was to continue to cry out to the Lord. . . .my anger was not reserved for my mother. No one I love was safe from my tirade of words.” (pp. 63-64) “I was afraid of being left alone in the world.” (p. 203) I had been alone as a widow in the past, and feel with friends I will be able to handle this. I am however afraid of finances and my husband's deterioration due to Alzheimer's. Heaven awaits him as well as me. This life is not all. I know Linda recognizes that too, but she doesn't dwell on it as much as the loss of her mother.

Insights from Linda

• Be the facilitator. "This ability to separate the disease process from the Mother I knew and loved was a crucial shift in my thinking. Once I gained an acceptance of the fact that her aberrant behaviors were disease related, I no longer viewed myself as the long-suffering caregiver who was putting up with her mother’s difficult behaviors. I was to be a facilitator, not a dictator. I became a fellow soldier with my mother in the battle against Alzheimer’s. I was on her side."(p. 100) Don’t be patronizing or treat my husband like a child I realized.

• Linda points out the wait time between diagnosis and death and calls for the patience of release, the patience of acceptance, the patience of faith, the patience of hope and the patience of love. (p. 106) I will go back to that page often.

• “I need to discover the difference between casting my cares on Jesus and casting blame on others. . . . I needed to ask God’s forgiveness for the harm I’d done to others while I was preoccupied with a struggle against my own burdens.” (p 121-2) Oh yes, Linda, I have been hurt by thinking others owed more attention to our situation. Instead I have to cast my cares on the Lord and flee to him.

• Linda’s mom used to have many friends, but now it was just Linda. However my husband still has friends and new friends such as Jim. We have to keep up these friendships while we can.

• “The Lord was the one who had placed the job title, 'Alzheimer’s Caregiver,' after my name," writes Linda on p. 201.

• “I must not lapse to self-pity, and I must not look at my own sacrifice. There is nothing I can surrender to the Lord that will not spring forth new life in Him.” ( p. 243) Wonderful insight.

• “If you find yourself bound with resentment from the feeling that you have been appointed to be the center of your loved one’s universe, let yourself off the hook. God is the Provider for your loved one, and He will provide for you too.” (p. 163). Linda, I am going to memorize these words.

Thanks so much, Linda, for providing this rich fellowship for me. I wrote a review on Amazon and another site and will continue to look for your posts.

Alzheimer's Reading Room Quotes Post One

Bob DeMarco writes the Alzheimer's Reading Room. See link at right.  Bob is taking care of his 94 year old mother.  Here are some of his quotes and that of others from his Reading Room.

• I am saddened when I hear these words --this is not the person I knew -- because those words objectify the person suffering from Alzheimer's. When you objectify a person you also dehumanize them. Once dehumanized the person becomes a villain.
• My mother is still the same person I have known all my life.  She suffers from Alzheimer's disease.  Her brain sends her the wrong signal quite often. Its up to me to let her use my brain.When necessary.....
• Dotty and I would start living our lives as we always had. It took me at least two years of Alzheimer's caregiving to figure out that we needed to start living our life the way we always had. I knew we had to do something or the end was going to come sooner rather then later. Either Dotty was going to drop off the edge of a cliff, or I was going to jump off the edge of a cliff.
• Carol Blackwell quotes someone else in a Reading Room article. “If you face a difficult situation, you have two choices. You can change the situation or, if you can’t do that, you must change yourself to meet the situation.”
• Tom and Karen Brenner are quoted: Pay attention; look at the faces of the people you love, listen to the music of your life, feel the wind on your face, taste the ice cream. These moments are like jewels, strung on the necklace of time. If we lose these small jewels of life, we lose ourselves.
• Barbara Pursley writes about taking care of her mom who has Alzheimer's:  The essence of my being is constantly changing from happy to sad, from mental order to disorder, from freedom to chaos, from physical energy to fatigue, from hope to hopelessness, from my life to her life to our life. I know people mean well when they say, “Don’t forget you have to have a life of your own, aside from your mom, but maybe what I’d prefer to hear is “I know how difficult it must be caring for your mom and meeting your own needs too, so if there is anything I can do to lessen your burden, please let me know.”

Dear Lord, We are letting You know. Please be with and bless these people who write on the Alzheimer's Reading Room and help them with their challenges.  Thank you that I am learning to bless my husband and enjoy the simple life we have together. Help me to not whine, but to trust You for the challenges ahead this month. Thank you that the expert plumbers are here. Amen. 

Third Book Report--Could It Be Dementia?

So far this is the only Christian book on dementia I have found, and it is fairly new--copyright 2008. It was published in the UK where caregivers are called "carers". The authors, Louis Morse and Roger Hitchings, both work for Pilgrim Homes in England and are used to dealing with dementia patients. They write from a Christian perspective and answered questions for me.

• Maybe we do need "Parish Nurses" to show how Christian do love each other(John 13:35). I am in the process of finding a support group or maybe starting one. "Looking after someone with dementia is not just time consuming--it is all-consuming. It drains your emotions, your energies and your finances." (p. 170)
• Loneliness is painful for people with dementia. Okay! That's why my husband loves for me to sit by his side while he watches old movies that bore me. Conversation doesn't always make sense to him, but he loves to be with me, go on errands with me. (He used to not like to go shopping with me before the dementia set in.)  
• I need to keep my husband as involved as is possible the authors suggest. I came home yesterday and he was preparing to mop the bathroom floors. I will let him finish that instead of doing it myself.
• My husband swears now when he is frustrated and while this bothers me, I read "The swearing is not because of a suppressed sinful desire--it is the disease. . . .Part of the impact of that terrible illness is this aberrant behaviour, and he has no control over it. It is not that he doesn't want to control it--it is beyond him." (p. 142) Fortunately he doesn't swear at me, just other drivers, or situations that frustrate him.
• "There needs to be less focus on their 'deficits', and more on their needs as human beings." (p.149) My husband is not a disease, but a wonderful human being with personality, likes and dislikes. The authors stress having photos and memorabilia around so that he is reminded of his likes and memories. He has photos of memories on his Facebook page and I am still trying to get him to respond to grandchildren who post on Facebook. I need to make his scrapbook soon!
• "Caregiver syndrome can lead to high blood pressure, diabetes and a compromised immune system." (p. 123) I need to take care of myself so I can take care of my husband. I guess I need a support system perhaps more than this blog.
• He asks me repeatedly "How was your day?" and I repeatedly tell him. I am afraid to ask him how his day was because he won't remember. "People with dementia still need to know that they are loved. They want the same kind of reassurance you would give a child--or anyone for that matter--a hug and a reminder that God loves them too." We often tell each other that we love each other and show it in other ways.
• "And sometimes, an individual who is not normally able to speak coherently will say the most beautiful Grace. One home manager said, 'Even when everything looks to the contrary, I am convinced that the Lord keeps His connection with us, through to the very end.'" (p. 118) Where once my husband initiated devotions and theological discussion, now I need to initiate Bible reading. Yep! He still prays wonderful prayers, as if he doesn't have dementia.

Caregivers

http://www.alz.org/

I found helpful insights from The Alzheimer's Association. Many insights apply to me now, many will later and many for care givers who read this blog. I am thinking of a wife and two daughters who read this blog and are dealing with Alzheimer's for their loved ones.

Symptoms of Caregiver Stress include denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and health problems.

• Anger. I have come to not get angry about being asked something again and again. Originally I was angry about my husband not picking up on tasks around the home. Yesterday my sweet husband on his day off cleaned the living room carpet. I didn't ask him to do this, but he knows to contribute and often tells me how he appreciates all I do for him and our dog Ziggy.
• Social Withdrawal. I need people and so this is not a symptom of my stress yet. However, I have noticed that my husband didn't want to go to the neighborhood Christmas party and doesn't want to take road trips out of town now. This can become a problem for me. Thank God for this blog. I do need you all to make comments and post.
• Health Problems. Once again I need exercise and a slow diet to lose weight so I don't get major health problems myself.

Ways to Reduce Caregiver Stress from Alzheimer's Association

• Know what resources are available in your community.
• Become educated about Alzheimer's disease and caregiving techniques.
• Get help from family, friends, and community resources.
• Manage your own level of stress. I say simplify, organize.
• Accept changes as they occur. Last night my husband and I saw "On Golden Pond". We discussed how actors Fonda and Hepburn were handling old age. How poignant it was when Fonda says he went a certain distance from their rustic home and then didn't know how to get into town. Hepburn sweetly accepted this. My husband has trouble with directions now. We have also seen and discussed the movie "The Notebook". Now, granted, sometimes my husband doesn't remember the movies, but I believe honestly discussing movies help us as a couple to deal with his dementia. It helps me accept.
• Engage in legal and financial planning.
• Be realistic about what you can do.
• Give yourself credit for what you have accomplished; don't feel guilty if you lose patience or can't do everything on your own.

Finally Alzheimer's Association writes to us caregivers: "You can live a meaningful and productive life by taking care of your physical and emotional health, by engaging in activities you enjoy and by spending time with family and friends."
Just a footnote from me: Dogs and husbands with memory issues live in the moment. They enjoy each moment and don't worry about the future or the past. Great lesson for us all. Thank you Lord for my daily blessings--for now--for this very moment!