Getting Through the Dark Days of Caregiving--Book Now Out

I always liked this picture. I chose this picture for the cover of the book. It was taken in 2012 about two years before my late husband, Herb, died. We took classes in the afternoon at our Lakeland Church, and Herb chose a comfortable chair to sit through this counseling class and I love his smile. 

The publisher blocked out all the rest of the picture, not showing the "faith" on the bookshelf or my purse on the floor! I love the book cover with its dark grey. You are a caregiver, a hard situation, for your loved one and at times they shine through. That cover says it all for me. 

You might recall that this project started out as a seminary counseling dissertation for an EdD degree, with the seminary in Florida, and my having moved to Alabama. I went back to Florida twice for that dissertation, but then decided that I really didn't need a counseling degree in my 70s--nor a dissertation. So the project morphed into a book. I want friends and churches to help with the caregiving and the book helps them help. 

The book is from a Christian perspective, but I didn't feel I had time to hunt up a Christian publisher. Yes, I had written for Gospel Light Publications, D. C. Cook, and a Dallas publisher, but that was YEARS AGO and that was all about Sunday School curriculum. After all I am getting up there in age! I wanted people to know with the LORD's help you can be a caregiver for your loved one. I chose a self-publisher, Xlibris. I didn't have time to find that publisher.  

I invested money for Xlibris to do this. Then they wanted more money for marketing, but I have VERY limited funds because of my caregiving and didn't go for it. Suddenly what I thought was finished, isn't! I now have to promote the book! 

Footnotes were a big problem. I learned what needs permission and what doesn't need permission. I learned that Chicken Soup for the Soul needed money to quote them and, sure enough, when the book came out, they cashed my check. Someone else has a check also. Have to research who that is. All of the permissions were sent to Xlibris via email, with the exception of less than 10% of book quotes and public domain quotes which didn't need permissions. I quoted myself from this blog. 

With my going through eye surgery now, there are a few printing mistakes that I didn't catch and the publisher didn't catch, but basically I was my own editor as a former English teacher in public schools. Xlibris made the pages and put the pictures near where I suggested. I had to sign off on different parts of this publication process including the ebook now advertised for $3.99 on Amazon. Two lovely reviews are now on Amazon and those reviewers got their ebook from Amazon. 

You can order Getting Through the Dark Days of Caregiving from Xlibris, Amazon or Barnes & Noble. Have NO idea how I will get paid for this book, folks! I can buy them myself from Xlibris and then charge the regular price for them. I mailed priority rate books to four people for about $8 per book!

My free book copies came last Tuesday night when I got home from Toastmasters--two hard back copies and eleven paperback copies. I am keeping one hard back copy and gave the other one to Huntsville Health and Rehab that has one picture and input in the book. You may recall that I lived there for three weeks, and visit there regularly, including seeing my friend Virginia who turned 100 February 21, 2019. 

I had two experts read and endorse the book: Dr. Eyrich and Rev. Mahn. I personally brought Dr. Eyrich's book to him last Thursday in Birmingham. That day I also gave one copy to the Alabama Alzheimer's Association located in Birmingham. Rev. Mahn will get his book Tuesday night at a Huntsville grief group dinner that I am going to. Mahn helped me with my own grief and that tenth chapter on grief. There are others who helped edit the book and their names are in the acknowledgments.

Friday I substituted at a middle school where I have many fans because they like my raps. I showed off the hard copy and they clapped. I wanted them to know that I am not just a silly substitute who raps and has a YouTube, but wrote a serious book. 

Caregiving is serious 

and so is my book! 

Y'all buy it! 

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.

Saga Twenty

“.

"Don't think about the future.
Just be here now.

Don’t think about the past.
Just be here now.”


― Ram Dass

Life is so fleeting. My dear friend who prayed for my husband's Alzheimer's has now gone on to be with our LORD. She prayed every day from her wheel chair for us while going downhill from Muscular Dystrophy. I am challenged to increase my prayer because of her. My friend was not her disease, neither is my husband his Vascular Dementia and Alzhiemer’s.

I want my husband to feel in control as long as possible. Richard Taylor in Alzheimer’s from the Inside Out writes:

" I vaguely recall a time when lots of people were coming to me

and asking for information and my opinion concerning things

other than myself or my disease." (p. 203) 

So it was that I asked DH if we could attend a memorial service Tuesday night , November 29th, for this dear friend of over thirty years. He said yes. His opinion counts and I didn’t know that he would have said yes—but he did. I canceled four days of substituting which along with trip expenses would put our budget back, but well worth it. We dropped our dog off at the kennel.

Monday we drove over 500 miles to Daphne, Alabama, just west of Mobile. I had not slept well during the night and got up to write a six page eulogy for my friend and so hubby did a lot of the driving that first day.

My friend had also been my bridesmaid. Although we only lived near each other for two years, we wrote and called after that and visited when we could. We would have fun cleaning each other's homes. The years rolled on by. When MD came into her life we e-mailed maybe once a month. She would write “I pray for you every day” at the end of her e-mails. Her only complaint about the MD was that she didn't have the muscles to smile any more.

She was to get one of my unusual gifts for her 66th birthday—a binder of my favorite Scripture. I enlarged the font size to 18 for her binder so she could read easily and she e-mailed Oct. 12th, our last communication, “I don't think I need 18 point font. Maybe something halfway between. Looking forward to my b. d. gift.”  She had her husband contact me to thank me for the gift. She was admitted to Our Lady of the Lake Hospital because her cough was not responding to antibiotics.

I called her hospital room and her husband put the phone up to her ear. “It’s gonna work out,” I said to her. “Either you will be with Jesus or He will help you go through this.” She did give me a faint reply so I knew we were communicating and agreeing. She died the day before turning 66, with MD taking over the muscles in her lungs.

During the trip my husband asked many times where we were going. Then Tuesday morning we arrived in Louisiana, having driven over 200 miles to Baton Rouge, Louisiana, our destination on the second day. We checked into our second Microtel and I checked my e-mail for word on my eulogy from my friend’s pastor. It turns out that my departed friend had scripted her own memorial service and my eulogy was too long. The pastor’s editor was cutting it down!

The memorial service was wonderful. My friend lived well and died well. She and her husband even traveled abroad with the wheel chair. She was always e-mailing about her four young granddaughters whom I met at the memorial service. With fourteen pages of hand written notes on her own memorial service, the program proceeded. First there were slides of her life before and after MD while the Prelude included “When the Roll Is Called Up Yonder”, “When We All Get to Heaven” and “How Great Thou Art”. The pastor read words from my friend, including jokes about heaven and Scripture. She had selected favorite hymns for us all to sing and a sermon he had preached in the past that she had him cut down to eight minutes by his staff editor who had edited me as well. I gave my eulogy as did others. The pastor read her “closing words” and then her “final closing words”. Unscripted: the pastor had us clap for her service which we did at the end.

Wednesday morning, the day after the memorial, in the spirit of my friend (live your life), my husband drove us from Baton Rouge to New Orleans. There was lots of traffic and it was stressful driving for DH. On the bucket list of my husband was the casino. The valet took our car and we decided we could have two hours in the place. He put $20 into a slot machine which he quickly lost. But an item on his “bucket list” had been checked off. We walked around and settled into a buffet for a brunch. Security guards with cages of money went by. We retrieved our car and I drove through the French Quarter letting my husband see the sights.

He had lots of questions on what state we were in and lots of comments that I didn’t make sense to him. What did make sense was to stay in our third Microtel in Marianna, FL. All the rooms are basically the same for an Alzheimer’s patient, and each hotel has a continental breakfast. Thursday morning frost was on the window of our car. We put the header on and waited until the windows cleared. Whenever it is cold in Florida, DH often quips “I think we should move to Florida!” It was best that I didn’t talk too much but just listen to him while I drove or he drove. Here is what he did say:

I will be so glad when I don’t drive anymore. I desire to be a passenger.

We picked up our dog and headed home. The next day I called State Farm Insurance and said we would just be one driver now.

I will miss my friend and will try to keep up

with the family and pray daily for them.