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! 

Aha Moments in My Caregiving

Not to sound like a braggadocio, but my hubby was great and knew he had a problem. I had to change and learned to take those changes in stride. 

Caregiving.com asked for seven caregiving moments. I actually took the time to read through a lot of this blog. 

One 

Meeting another couple I call “Sally and Jake” (their names on my blog about my husband’s Mixed Dementia) and our doing things together so the Alzheimer’s husbands bonded. Meanwhile Sally and I had support from each other when we did things together. Our husbands went to a senior center together and this would not have happened if they had not first bonded. Jake is not able to go to the senior center without my husband because they used to do this together. 

Two

Using coconut oil that seemed to calm my husband, although it didn’t cure the disease as he passed away June 23 of this year. 

Three

The realization that I was in training since I couldn’t control his disease. I had to change and I often didn’t feel at home in our home because I had to make so many adjustments.

Four

 Handling difficult issues such as driving. I worried and worried. In the end after passing two Alzheimer’s driving tests funded here in Florida, my husband decided on his own that he wished to be a passenger.

Five

 Dealing with Urinary Tract Infections (UTIs) and incontinence.

Six

The medical community not understanding my husband’s not being able to walk. At first they thought it was a torn ligament. Then arthritis. A chiropractor helped until several months before he died. Really, not walking is part of a later stage of the disease.

Seven

The incredible help of Hospice so he could die at home and the amazing help of volunteers such as Kenny and Pharis that enabled me to keep working until several months before he died.

~ ~ ~ ~ ~ ~ ~ 

I am so glad that I decided to keep blogging after my husband was diagnosed. I look back on so much life that we participated in even after that diagnosis. I am so grateful to our LORD for taking me through, even as I grieve now for my husband. 

Hospice

OH THIS IS SO HARD!  

I AM GRIEVING.

Hospice doesn't just have to be for the last days, but maybe for days like I am having near your loved one's end. Hubby can't walk. Can't get him showered. Incontinence. I solved one very small bed sore with Vaseline, but what if they return?

Every day lately there has been decline.  Yesterday when 2:30 rolled around and hubby was soaked with his own pee and I couldn't get him out of bed, I called Hospice. Matthew from Hospice was here at from 4 pm to 6:30 pm yesterday to interview me and see my husband. He even talked with Kenny on the phone. He qualified and we are enrolled.

Yesterday before Matthew from Hospice came,  I went briefly to town. I stopped at the Plant City Senior Center to sign two forms they had called me about. I cancelled my husband's coming there again today and said for the foreseeable future I couldn't see his coming there. I went to his doctor's office to deliver pee I had saved in the refrigerator in a plastic bag from before he took the antibiotics for the UTI. They wouldn't take it--wrong container. I threw it in the trash.

I texted my pastor and family members and several family have called. My pastor texted me last night that I had done the right thing. Brenda from TN and Sherry from my church emailed me this morning.  Ruby from Australia wrote on the last post. Thanks!

It turns out hubby has a new doctor now--a Hospice physician named Dr. Adria Stephens. Hospice will cover some meds but not all--no more Exelon Patch and Namenda. These preventative medicines weren't effective anyway at his stage. Hubby won't even remember about Hospice coming to the house yesterday afternoon.

Hospice evaluated him at stage 7c. There will be a team of people that come to the house. I look forward to meeting what they call Team Aqua. They will even send a chaplain. A nurse will come every four days. A Hospice aide will bathe him. They will provide him with a hospital bed when I say so and I will buy a single bed so I can sleep by him.

This morning I had to gently let my husband down to the floor in our bathroom because I couldn't get him a few more steps to the wheel chair outside the bathroom. I placed a pillow under his head.  One phone call this morning and I had the fire department that Hospice called help me get hubby to his wheel chair and ready for the day.

I reminisce below about the last times I have had with hubby as I have carefully kept this blog and evaluated my Facebook postings.  

• In December of 2008 when I started this blog my husband was diagnosed with dementia, the umbrella term for many conditions. He was officially diagnosed with Mixed Dementia in October of 2010 and the neurologist was surprised he still dressed himself and the Byrd Institute was surprised I was giving him coconut oil (now they have a study about it). 
• It has only been within the last year that I have been selecting his clothes and doing more of the dressing. Since Thursday when I cancelled substitute teaching, he has been wearing loose jogging pants and T-shirts which he can also wear to bed as PJ's. They have to be changed when he pees through them. 
• Camping has not happened since Memorial Day of 2012. My family provided a respite cruise for me in while hubby went to Virginia to stay with his son also in 2012. We also went to Virginia for Christmas of that year. 
• The last special dates were last month as recorded HERE—April 22 a concert and April 26 a b. d. party for two sibling dogs. 
• The last movie we saw together was "God Is Not Dead" on April 3rd in Lakeland. The last anniversary we celebrated was our 14th when we went to  Carrabba’s Italian Grill Restaurant in Plant City. 
• The last time we went the chiropractor and the last time we went to a restaurant was May 7th--last Wednesday. After the chiropractor, he hobbled into the restaurant and I couldn't see that going to the chiropractor who had been helping him was effective. A lady at the next table at Sony's BBQ told me that there are straps I could get to help me get hubby up from the table--check a medical supply place, she said. Hubby was just starting an antibiotic for a DUI, but walking was not to be. Every day since the walking has declined. He has finished the antibiotic as of this morning. 

She does him good and not evil all the days of her life. 

Proverbs 31:12 

I need Hospice to accomplish that verse. I hope to "do my hubby good", concentrating on what I can do and what he can do, enjoying his smile, humor and our love for each other with more time together than if he were in a nursing home wishing to come home. Already this morning we have told each other we love each other several times. With Hospice I can probably keep hubby home until [gasp] he dies and his soul is immediately with the LORD waiting the resurrection of the body when Christ returns. Hospice is a reminder of grief, but as a Christian I do not grieve without hope. But I am going to cry. 

Beginning of Stage Six

Even in laughter the 

heart may sorrow,

And the end of mirth 

may be grief.

Proverbs 14:13

I started noticing changes lately. Those outings we had in April, may be the last ones we have and that thought was in the back of my mind when we went to a show and to a party. Some of our usual routines are not working. I am showing signs of being stressed out by change (not sleeping as well) and hubby is definitely changing. It may not just be a UTI--my idea earlier in the week.  Rather hubby may be headed into stage 6 of dementia. Oh my goodness! I did not want this to happen. I am trying to have a normal week. 

Enroe from my church helped me on Tuesday, his day off and my day off from substituting. After I dropped off the GMC to have the air bag replaced for free because it was recalled, Enroe  drove me around all morning in his vehicle. We went to Social Security so I could order a replacement SS Card. We went to my husband's doctor's office to get a prescription for his suspected UTI, and we went to one bank. Then Enroe drove me to a Christian Women's Club lunch where I sat with my friend Sally. Ordinarily both of our husbands would be at the Senior Center, but my husband was in no shape to go. Jake has been at the Senior Center enough with my husband so Sally can leave him without a problem. Then Sally drove me to a bank and then to get my car. I went on to Lakeland Toyota to find out about a gap refund since I have refinanced the GMC. Ordinarily Kenny would drive me on such errands, but he is out of town. Tuesday I had to do it all and Tuesday night it was so hard to deal with hubby! 

With Kenny gone, I have been fixing hubby a peanut butter and jelly sandwich on a croissant for lunch when I work. He loves it. My plan has been to not substitute on Tuesdays this May. I told myself it's just a UTI and he will get better. 

What do they say about the best laid plans!!!

Wednesday morning I woke up ready to give hubby his pills, get him dressed and wheel him in his wheel chair out by the TV. No way did this work as it usually does and I had to call the school to say I would be late. I just could not hurry hubby up. He had only had his second antibiotic pill for the UTI. To top off everything, the sheets and mattress pad were wet!  I decided to not substitute for a few days, maybe until Kenny is back in town. Yes, we need the money, but the LORD has always provided and He can do it again. 

What is happening? 

1. I have to stop my busyness because we may be going into stage 6 of Alzheimer's which is described HERE. I cannot keep up my pace. 
2. We are using a wheel chair and a walker. Last year hubby would have objected. Recently this is the way he is getting around and he is accepting it. The chiropractor can only do so much to restore his ability to walk now. He hobbles. This is stage six, folks. 
3. Urinary incontinence is here. At first hubby did not like these briefs. I wanted to mail back the adult diapers to Rite-Aid and waited for directions for that mailing that never came. Now I can use them at night and will try them tonight. This is stage six, folks. 
4. I AM BLIND! I can no longer be THAT blind to blame his behavior ALL on a UTI. 

Before I confirm stage six, which is highly suspect, I will see someone at the Alzheimer's Association tomorrow morning. We will see a neurologist in June, if not before so we can see if the Exelon Patch and Namenda will still need to be taken. What other meds does he need? I wonder.  

Sad update:  Kenny's mom, Margaret, has stage four cancer. She is in Orlando recovering from surgery that may not have gotten all the cancer. She will have chemo. Kenny told me she asked about me. She has been such a wonderful friend and fine Christian believer. I would choose her as a sister any day if I could. Her recovery is not guaranteed, but we have talked about our guaranteed future in heaven with our LORD. 

I am just not ready for all of this! 

Carol

What's Been Working Here, Folks

Next month we will have been married for 14 years. Dementia has been around since 2008. This cartoon from Pinterest board is us, although I don't have a cane and I color my hair to look younger and give it more body. Hubby doesn't get shaved every day also and he used to be a little taller than I am. He is frail now and I guess you would describe me as a spunkly old lady. So how is it working for us?

1. Help from others. We are so blessed that volunteer caregiver Kenny lives nearby and comes over at least once a day.  Pharis is our volunteer for yard and maintenance. Kenny will text me when there is a problem. He will change the TV channel for hubby, because at his stage of dementia, he doesn't use those remote controls. See HERE. Because I have Kenny, I can keep working to pay the bills which include a car payment now. March 24-29 I have 4 1/2 days of substitute teaching and Saturday for teaching a class for DUI offenders.

2. Routines. Kenny established routines for shaving and showering and continues to make valuable suggestions. When Kenny will be gone for three weeks, I will be the one to use these routines and I have taken careful note. I do seem to carry with me the wife nag factor, so it will be more difficult for me. Taking morning pills in the bedroom works for me because Kenny established that routine which I mainly carry out now. At this point I put a pill in hubby's mouth and instruct him to swallow it with water. If I don't get the morning pills for hubby accomplished and have to leave the house, I text or call Kenny who sees that hubby gets his morning pills.

3. Help from a chiropractor whom hubby sees every two weeks. Now hubby can walk fairly well, although he has that old person's hobble. Alzheimer's expert Teepa Snow even imitated how my husband walks.

4. Simple, affirmative dialogue. Have learned to get in front of hubby.  I often tell him I love him, and I do mean it. It seems that love takes enriching turns as the disease progresses. I know hubby would be there for me if the situation were reversed.

5. Simplifying life wherever and whenever possible. Perfectionism is absolutely gone in life as I approach my 70th year in June. Shaving my husband's whole head means we don't have to visit the barber now. Planning errands for the week rather than for the crisis moment. Have a car appointment on Monday--so won't teach that day.

6. Friends Sally and Jake. It is so pleasant to go to dinner with them as we did recently at Olive Garden, using a coupon. The husbands sit across from us and Sally and I can chat to the side. The guys turn up their humor when together. Jake is so wonderful helping hubby walk as he walks alongside of him just as Kenny does.

7. Soliciting prayer from others.

8. Realizing that this is exactly what the LORD in His providence has in mind for us and He will see us through. My husband is going downhill, and I thank God for every good day knowing that it is and will be getting worse.

Carol

It Depends: If You Care to Read This

Spoiler alert. 




If I would be a nice person, I would not write about this subject. Incontinence is not a nice subject. However I am a kind wife who has to address an issue bravely and this blog is all about one wife's brave journey (and all her distractions such as eyebrows and quilts) as a caregiver who has had lots of surprises along the way.

Because he walks so slowly now, my husband was not making it to the bathroom--it was bound to happen. So far my hubby has not wrecked a mattress, a couch or a car seat by peeing. I am trying to be proactive here, folks.

When we were on vacation, Kenny suggested I buy a product I had not bought before. Buy Depends, he said. Well, the closest drug store where we were, Rite Aid,  didn't have the night time Depends--only the daytime pad to put in boxer briefs. However, I came to see that the Rite Aid nighttime product works great day and night. It's called Rite Aid Adult Protection Briefs for Men & Women.  On line it costs $9.99 for a pack of 14 bought on line. At times we use Depends for Men Guard with his underwear, but that doesn't always work and the Rite Aid Protection full underwear is the working great so far.

We do not have Rite Aid Drug stores in Plant City, so I have ordered some on line. They will be about 85 cents a piece because I ordered several packages and the shipping is free with a promotion for products over $50.

In the middle of the night recently I noticed that hubby was in the master bathroom.  He had a big pile of loose poop in his Rite Aid product. I remarked that these underpants do a good job--nothing was on the floor. 

Hubby said to be quiet—someone might hear me. 

Who? I wanted to know. We are home alone and no one else is in our house. 

So you see my husband really has deteriorated both physically and mentally. No one was staying at our home and maybe he thought he was still at my brother's house. 

Today when I told his doctor about the incontinence, the doctor said that hubby could go on a low dose of OXYBUTYNIN. He is starting on 1/2  of a 5 MG tablet twice a day. The side effects are dry mouth. Bingo! This side effect will get hubby drinking more water, green tea and cranberry juice to prevent UTIs!!!! 

We have a wonderful small pharmacy in Plant City. When I went there to fill the Oxybutynin, they gave me a free pack of LEADER Protective Underwear and they look just as good and they even have a blue line in the back.  If I like them or the Rite Aid brand or any other band, they will stock them for us! Will try the LEADER out and comment both on the medicine and the LEADER brand vs. the RITE AID brand on a comment on this post. Why they even cut the tablets in half for me! 

Should you use Depends? It depends. For now I'm sticking with Rite Aid Adult Protection (or LEADER) for day and night. My husband is happy with this.

Giving Thanks For Fifteen Again

1. Hubby is walking again around the house. He willing uses a walker when we go out. When we seniors fall, it can mean broken bones and I am grateful he accepts that walker. 
2. Chiropractors that helped hubby walk.
3. Kenny who has come into our lives last spring. Kenny is a remarkable volunteer caregiver who enables me to continue to work. At the beginning of November, despite his own surgery, Kenny has continued to be there for us, and has even brought his mom into the picture. We are so grateful for these neighbors.
4. Wayne and now Pharis who have taken up the challenge of our 7/10 of an acre. Hubby doesn't think a wife should mow the lawn, and the front and back yards were the place where in my blogging through the book The House That Cleans Itself  I have been hung up. 
5. Professionals such as Carole Larkin and Dr. Mary Newport. 
6. Support from The Alzheimer's Association.
7. Our friends Sally and Jake (not their real names).
8. The Plant City Senior Center where Jake and hubby go one day a week. 
9. Bloggers who regularly comment on this blog and who provide fun and inspiration for me when I read their blogs. I would name you all, but I might forget someone. 
10. Students I substitute for who provide such hope for the future and who have encouraging my becoming MC AC The Rap Lady. 
11. My niece and nephew who started my YouTube rapping channel.
12. Progress on my seminary counseling dissertation on caregiving even as I battle caregiving issues myself and people who provide feedback for that dissertation. 
13. Having out-of-town guests for Thanksgiving.
14. Having a great dog, Ziggy, that is a wonderful companion for my husband and me.
15. My faith that sustains. For example, I am so grateful for the LORD's sustaining us through hospital trips for me in 2012 and for hubby in 2013.

Last year I posted 15 I am thankful for HERE  and I continue to be grateful for items on that list.

Also last year I posted 15 things a caregiver can do 

to be joyful HERE 

and it has received over 750 views. 

That's a lot on JOY this lowly blog 

has spread around!

Kudos for Outstanding Help

Kenny and nurse

Thursday night hubby and I 

visited Kenny in the hospital. 

DH used his walker and then 

inside the hospital the staff 

provided a wheel chair to 

Kenny's room and then back 

to our car. 

Incredibly when Kenny got out of the hospital Friday morning, Kenny came over to fix hubby's lunch. Today, Saturday, Kenny remembered that the First Baptist volunteer group, "Second Saturday", were coming this morning to install five grab bars for our two bathrooms. You may remember earlier HERE that Lowes and Home Depot would not send anyone out and we were trying Safe-er Grip, Balance Assist and, frankly, that wasn't working since hubby kept having problems walking and grips with suction cups would come off the tile. 

Where was I this morning? I was teaching a class for first-time drivers and I could not get out of teaching it. So dependable Kenny, in pain after his gall bladder surgery, came over this morning to help the volunteers know where to install the Moen Home Care Grab Bars. 

The previous seat HERE hubby rejected--he wasn't used to the Moen Home Care Locking Elevated Toilet Seat With Support Handles. Now there are two small grab bars in one bathroom above and three in the bath where hubby showers and shaves.

A grab bar at the right ushers DH into the bathroom. A slanted one helps him get up from the toilet and into the shower. A grab bar on the wall in the shower has his wash cloths. 

Could I get him to shower today? No. He is exhibiting strange behavior now. Perhaps Kenny will be well enough to help him shower and shave tomorrow before church. Kenny you may recall has him sit on the toilet seat while he is shaved and then skillfully moves him into the shower.

Meanwhile I am writing a post on hallucinations, delusions and delirium and watching hubby go downhill, sadly. I am also working on my dissertation on being dementia caregiver.