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! 

Moving Reflections: Finding a Church

Thirty years ago I was a member of a Huntsville church for part of the 15 months I lived here. I have a wonderful church family in Florida, but needed a church to worship with locally here while maintaining my Florida church ties. My plan had been to visit different churches in the Huntsville area and to take my time finding a church here while maintaining contact with my Florida church through social media including listening to my pastor's podcasts of his sermons. After all I am working on a counseling dissertation on dementia caregiving at the seminary connected with my Florida church.

The first time I lived in Huntsville I got married at age 40 and it wasn't long before in 1985 we moved to North Miami, Florida, where we were very active in a church. My first husband's funeral some eight years later was in that North Miami church and his daughter would buy our home in 2000 when I moved to the Plant City area to marry a certain Mr. Johnson whom I also had the sad task of burying last summer as I recorded on this blog.

My dad and I in
a certain church corridor
I would return to. 

Some thirty years have now gone by and I started my church search with that church I had been a member of with my first husband. My first Sunday there was Father's Day, June 21, 2015. After the senior Sunday School class,  I came to a corridor where I had been with my late father, ready for him to walk me down the aisle. I got teary-eyed. He had been 70 and I was 40. He was such an OLD 70--refusing at first to get on the plane to come to Alabama from California to see his only daughter finally get married. That Sunday I was still 70! I do not feel as old as my father seemed at 70 in 1985. I learned a lesson from his being a widower--get on with your life and do not get stuck in grief as Dad had.

I enjoy corporate worship and instruction through preaching and again felt at home with this church. Worship could not include visiting every church in Huntsville, I reasoned--scrap that plan.  Sunday, June 21, 2015, I knew that this would again be my Huntsville church family. The second Sunday, June 28th, I went with the seniors to a play in Guntersville on the church van in the afternoon. In July I volunteered for Vacation Bible School and met many younger women, youth and children.  In October I am starting a book study during the week at this church. 

When you move to a new state you have to get new automobile plates, new driver's license (took three days in three cities), new car insurance (half of what it was in Florida), new doctor, new bank, and the list goes on. But at least I have a church family locally. 

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.

Saga Twenty-One

We spend Christmas Eve at Sally and Jake's church (since we don't have a Christmas eve service) and then went out to Dennys' with Sally and Jake for some Red Velvet Puppies/pie and decaf. My husband didn't remember trying on the great shirt I got him several months ago, and so it was a surprise gift.

Christmas morning we went to our church's regular worship. Many of the church family had their lunch at church and stayed there all day.  We went to my husband's daughter's home at 2 PM. There was another family member with dementia there and I spent time with him as if he didn't have dementia. So important.

Emotional eating when your husband has Alzheimer's. Dolores has lost weight and I am now dieting and losing. You can get to all kinds of programs for weight loss on the Internet. I chose Weight Watchers where I am a Life-Time member, not having to pay or attend all meetings. Weight Watchers has a great new program for 2012 called Point Plus 2012 and has on online program, excellent for caregivers who can't get out to a meeting. My meeting is 7 AM Saturday mornings--a better time for my husband to have me gone than an evening. Now this has meant for me what when my husband wants ice cream, as he often does, I don't have any. I think of my doctor's words to me,

"Carol, if you don't lose some weight and exercise,

you won't be able to be your husband's caregiver.
Forget the ice cream."

All the motivation I needed.  Plus people always ask us caregivers, "What are you doing for yourselves?" I am attending a Weight Watcher's meeting, and UGH, taking classes on counseling.

When people ask us what they can do for us caregivers, increasingly we need to say,  "Can you help me by scheduling time with my husband?" so that I can do something for myself. However, this is not needed yet as I can leave him at home with our devoted dog and he can call me on his cell. There will come a time when this won't work.

Sally really needs this time away from Jake, however. Recently he kept criticizing her driving and she told him it wasn't necessary and please stop. Well, Jake said I am getting out of the car then. He did and she saw where he went. She parked the car and then caught up with him and told him we need to go into Best Buy. That worked. I gave her this idea, to keep talking while she drives with him in the car and don't let him get a word in. Say things like, I see that car and I am preparing to stop. So far she  this tactic is helping his obsession about her driving and his not being able to drive. You just gotta deal with the husband's obsessions, one and a time.

When I have the time, I read a lot of Christian blogs and take especial note of counseling blogs since I am working on a seminary degree in counseling. These blogs aren't talking to caregivers, who one day may not even be able to attend a worship service. I am starting to be more vocal when I comment on those blogs that our churches need to minister to caregivers and those who have dementia. When that happens for me, fortunately, my church has Skype and I can listen from home. The blog that comes the closest to ministering to caregivers is Practical Shepherding.  This blog has categories for ministry to widows for example. I mentioned this need on another blog and got this response:

Carol, That is a huge area of counseling caregivers for those who are aging and experiencing physical and mental difficulties. Plus, counseling the aging...retirement, adjustment, loneliness, purpose, etc. Bob

Please, bloggers, pray for Sally and Jake. Also for Dolores who is facing putting her husband in a facility--heart wretching for this lovely lady, who is usually so positive. And have a Happy New Year. We are again spending an early New Year's Eve with Sally and Jake at our house, playing games, if it will work, with our husbands. I am serving a salad with chicken, but others can also have bread and ice cream. For the Southern New Years Eve with coconut oil go to this earlier site at the right.