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.

Traveling With a Dementia Loved One

Sunday dinner after church
with brother, hubby
and Kenny pictured at
Grandmother's House
Restaurant in
Owens Crossing, AL

Kenny, hubby and myself went to northern Alabama to visit my brother and his family. We started out on a Saturday, March 7th, with Kenny sharing the driving and the load of caregiving for my husband and came back on Thursday, yesterday. This year we drove straight through both days. In March of 2013 my husband and I made it a two-day trip each way. See HERE. We didn't know Kenny then, and hubby had not gone downhill as much as this March.

We woke in our own bed this morning. I started unpacking suitcases. What are those suitcases for? hubby wanted to know. He had forgotten about our trip.

Freshly groomed dog

We just got back from being at my brother's house in Alabama, was my reply. Hubby got a quizzical look on his face. Later today we picked up our dog from the kennel.

Wear and Tear on Hubby. While this trip was wonderful for me, it was hard on hubby. He had a calendar with the daily events on it, but let me know I didn't make sense. At times he was angry with me, but I have learned to stay calm. Bathroom issues came up--where was it and would he get there in time. This was not his home, the place he is used to. However, my brother and sister-in-law's home does have a convenient elevator that was so useful for my husband. He did fall Sunday morning, but was okay when Kenny and my brother got him up from the garden.

Family. I had a couple of goals for my time away. First and foremost I wanted to enjoy my family, and that did happen. Who knows when I will be able to see them again? Several nights my niece and nephew came over to my brother's home along with their families.  Kenny interacted seamlessly with my family who really came to appreciate him.

Activities. At times Kenny stayed with my husband while I did things with my family. Kenny stayed with hubby while I heard a special violin concert by a four-year-old, daughter of my niece and her husband. Another highlight was hearing my nephew teach an adult class Wednesday night at his church while Kenny was with my husband.  One day  Kenny went off sight-seeing with our car, and hubby missed Kenny. I was able to get a lot of sewing done that day. I wanted to be able to sew on a quilt of my husband's grandchild's and I was able to finish the patched front side with my sister-in-law's sewing machine. My time at home is so limited and getting to sew on an important project was such a delight. When this quilt is done, I will post in here.

YouTube Raps. This is the niece and nephew that made me MC AC The Rap Lady on YouTube. My nephew recorded three more of my raps while I was there, and my niece showed me how to use iMovie to post raps on You Tube. Together we posted "Cell Phones". Now the ball is in my court to put up more raps. It will be hard work, but my niece and nephew really do not have time to do this. I have the computer now that has iMovie. Can an old lady such as myself learn iMovie?! Hope so!

Honor. Early in the time away on my iPhone email I realized that my book, Getting Off the Niceness Treadmill, had been reviewed by a favorite author, Aimee Byrd, HERE. What an honor! I posted posts of her book on my theological blog earlier.

New Fellowship. A special highlight of the trip was the fellowship I had in a ladies Sunday School class at my brother's church. The teacher had read my book and the ladies wanted to hear me rap as I had last March! I did that and essentially the leader let me teach the class. I did have Scriptures ready. I shared prayer requests for my husband, my dissertation on caregiving and the rapping channel. Then they shared prayer requests with me. We will keep up with one another. Tuesday morning while Kenny was with hubby, my sister-in-law and I had breakfast with most of those ladies (there are seven in all whose prayer requests I have added to my prayers). Then my sister-in-law and I went to an estate sale where I found a bird house for Jake's collection.

Prayer. Pray for Kenny as he has medical issues coming up. Pray for my other sister-in-law in California who had surgery today. Prayer is such a special privilege and I am excited to have seven ladies in Alabama who now pray for my requests in their southern accepts and MC AC prays for them as well.

Interview: Saying Goodbye to Papa

Leaves a rich spiritual heritage for his children

I needed my fingerprints made for my DUI instruction just after Labor Day. It was then that Susan Haynes and I met when she did my fingerprints. It was at the time that my husband had two handicaps—he couldn’t walk and he has dementia. Susan and I immediately connected and started talking about her father who had the same two handicaps. We exchanged information and became instant Facebook friends. I told her that I wanted to interview her. Little did I realize then that her Papa Joe would pass away before we had the interview.

Carol: Your dad had difficulty walking since an accident. Tell me about that accident.

Susan: Yes, he was working and he fell off a house and the house fell down and pinned him down. He was taken to the hospital where the medics worked with him, but they knew it had paralyzed him.

Carol: How did the family get Papa Joe to stop driving and stop taking “joy rides”? My oldest brother came over and told him that he was 80 years and that 80 year olds do not need to be driving around. He took his driver’s license to the DMV and Papa let that brother turn it in. How did he accept your mom driving?

Susan: Papa didn’t like mom’s driving, so I would take him to the doctor appointments.

Carol: Your dad would take your daughter to the school at your neighborhood church in his scooter and then pick her up.  Were you all nervous about this trip?

Susan: No, I didn’t think about it at all, because I knew my daughter would keep him straight if she thought he was driving wrong. She told him that she loved him and that he needed to be out at the school at 2:45 pm. I will be looking for you.

Carol: Near the end of you Papa Joe’s life your family started noticing signs of dementia in your dad, right?

Susan: He had been a private man and short-term memory didn’t seem to be the problem, until signs of dementia had set in.  One day my daughter said Papa is getting old. For the last year and a half we started noticing things, but his doctor didn’t notice anything and he wasn’t put on medicine. Seven months ago he started acting like everything in the past as if it was the future.  

Carol: I noticed on Facebook when Papa went to the hospital early in October. Tell me about that.

Susan: The first time my mom asked me to ask him how he was and he told me he was fine and that he was not going to the hospital because he was not sick. When I got ready to leave he began to talk to me about his upset stomach. He said he guessed I should take him to the hospital. His ulcer was bothering him.

The second time he went to the hospital he said that something was wrong in his heart and they needed to fix it. His heart was racing fast and they kept him four days and then he came back home.

The last week of October 2013 my dad spoke softly, didn’t say much and said he was ready to go home to see the people that were not there anymore.  He was very weak, but he tried to be strong and his eyes were so grey.

I got a call from mom at 2 am to come help dad at his house. He was acting strange and when I got there at 2:15 am the ambulance was there and they were putting him on a stretcher and putting him in the ambulance. He was looking one way and would not respond to my calling his name. He had spoken to my mom and brother before I got there, wanting them to help him out of bed to go to the bathroom. But he would not get up, my mom said, and he couldn’t be helped up. That’s when the ambulance was called.        

About this time Sudan wrote on Facebook:  STANDING IN NEED OF PRAYER THIS MORNING FOR MY 88 YEAR OLD DAD WHO WAS ADMITTED IN HOSPITAL AROUND 10 PM LAST NIGHT WITH STOMACH PAIN AND DOC STATED THAT HE NEEDED SURGERY AND THAT HE HAD A SURGERY DOCTOR COMIN IN AROUND 12:OO THE DOCTOR STATED THAT THEY THE DOCTOR WAS IN AND LOOKING AT THE 3 CAT SCANS AND AFTER THAT HE WOULD REPORT TO US AND 1:30 WE WERE TOLD THAT HE WAS NOT DOIN’ IT AND HE WOULD WAIT UNTIL MORNING TO SEE WHAT HE COULD DO FOR MY PAPA.  LORD I AM IN NEED OF PRAYER NOT JUST FOR HIM BUT MY MOTHER AS WELL. SHE IS NOT THE BEST AT HER AGE BUT SHE JUST QUESTIONS THE DOCTOR AND WANTS ANSWERS LIKE WE ALL DO.

Carol: What did the doctor tell your mother?

Susan: That his heart was very weak now and they couldn’t really tell her, but he may live one to four months.

Carol: A week later you wrote that you were with your dad again and all seemed well. He was eating and drinking his Pepsi and watching TV, you wrote.  

Susan: Yes, I took pictures. I couldn’t believe it. He looked good too.

Carol: He as able to go home from the hospital then, but at the end of October he took a turn for the worse. Then you wrote on Facebook.

Susan on Facebook: Well my father fought a good fight but he won his case and left this earth at 1:35 pm with a smile on his face.  Thank you Lord for sparing him 88 years of which 52 I shared with him.

Carol: Was he alone when he died?

Susan: No. He was surrounded by his loving wife, his sons, daughters, nieces, nephews, and members of his church body.

Carol:  How had your older brother, preacher Willie Joe, summoned the nine siblings?

Susan: He sent us a text early the morning of his death that said: Good morning family. Hope life is serving you well. I give God thanks for a new day. If each one of daddy’s children will release him, he will rest. He needs to hear you say it is all right. That man is tired. He’s at the point he can’t do nothing for himself. Let him go. Daddy is tired. We can’t worry who doesn’t show up. We that do must assure him everything will be all right so he can rest. I don’t want to see my day suffer.

Carol: Did all nine children show up at the hospital? What was it like?

Susan: We were all there and it was very sad to see my father, the man that controlled us all, laying there and he patiently prayed and asked for healing for us and what we would be facing.

Carol: Then you posted on November 9, 2013, the day of his funeral.

Susan on Facebook: Dad, this is your day. What can I say? You left me here and you said you were tired and you have finished the race what God had for you. You told me I would be all right. You prepared me four months ago that you would be leaving on that 747 jet. I left work at 12:30 pm to see you again and talk to you one more time. At 1:30 pm you slipped. You passed with a smile and never looked back. You made peace and you loved the Lord who now has you.

Carol: What was that funeral like?

Susan: It was super, a slow home going celebration. It was unique in celebrating how he stood for the LORD. The church was full. My brother started to speak, but couldn’t finished because he was choked up. The grandsons were pallbearers.

Carol: I think you then posted this prayer on Facebook.

Susan on Facebook: I am missing my dad. LORD, please help my family to understand that it was time for him to depart from us, but most of all he left with a smile on his face. Thank you for the 88 years my dad lived and thank you for giving us him. Amen.

Carol:  I was praying for you all then and I am sure I posted on Facebook also. Facebook makes our world so small. How are your mom and the family doing now after his death?

Susan: Mom tries so hard to find things to keep her busy and we, as a family, are closer to her because of Papa Joe’s death. We want to be with each other more. 

Carol: What can other families learn from your story?

Susan: Stay with Jesus. He is the only One that can give you what you and your family needs when it’s time. Be strong and in control. Jesus is the answer.

Carol: Amen, sister! Thanks. It has been a pleasure to meet you and then interview you and follow your story.