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

Teepa Snow Workship, Part Two

Rarely have I attended a workshop on any subject where so much that was presented applies. It was SO practical. Rarely have I attended a presentation that captivated me all day long. 

Teepa Snow is the owner of "Positive Approach"  is a Dementia Education and Skills Training Specialist. For the last four days since attending the workshop her words keep popping up in my day-to-day existence with my husband who has mixed dementia. 

Teepa was careful to explain what is going on in the brain of a person with dementia as they are going into brain failure. She said that at least two parts of the brain are dying with dementia. The brain includes both grey matter (the filing cabinet) and white matter that is the wiring within the brain.  She told about deterioration in the left and right frontal lobe of the care receiver. Formal speech, articulation and executive functioning are leaving sooner, while automatic speech, rhythm and expletives remain longer. When our loved one is unfamiliar with a situation or setting, they become angry and those expletives come to the fore--their filters are gone. Each day I notice that hubby's vocabulary, especially, nouns, leave him searching for words and his executive functioning (steps to do certain things) is disappearing. I have to say put this pill in your mouth and here is the water for taking that pill. 

Teepa Snow in the day's presentation gave 34 examples of challenges that we caregivers face. I will cover 13 of them with this post--observations of my husband and what I observe with our friend Jake.

• Losing important things. Early on we faced loss of the cell phone and keys. Hubby no longer cares to have a cell phone. Jake has misplaced his cell and his electric razor recently.
• Getting lost in time, place or situation. Hubby asks about how we came to live in our home. His memory of the day planned is so short and he does need that daily agenda. Some times he forgets to look at that agenda. 
• Unsafe task management. Jake has manhandled his lawn mower and is not allowed to mow their lawn any more. He set fire to it. My hubby is not that ambitious and Pharis now mows our lawn.
• Repeated calls and contacts. Jake must have used his cell phone to leave messages on Sally's cell phone a dozen times during Teepa's workshop.
• Making up stories, what Teepa called confabulation. I noticed this Sunday when we went to dinner with a new church visitor. To keep the conversation going hubby had his own version of events to tell.
• Swearing. Saturday we went shopping for Christmas gifts. Hubby has already forgotten what he is getting! Determined to take advantage of sales at Talbots for my gift from him we drove to a distant mall. Hubby was very angry at the traffic and at me for planning such a trip and swore like a drunken sailor in the car while I drove, wanting me to turn around and go home. Rather than play the martyr and give up, I persisted with the mission to acquire quality at a bargain. It was hard to find a parking spot, and when we finally did park, he was happy to stay in the car while I went inside to get that 50% markdown with the purchase of three items.  When I returned to the car, all was well and he forgot about his upset. 
• Sleep problems--too much or too little. We go to bed early and it is not unusual for hubby to sleep 10 hours. He is asleep now while I write this post. 
• No initiation--can't get started. 
• Paranoid or delusional thinking. Hubby has talked about how our money system is changing and can't site where he learned this "fact". He also has a story about an alligator in our back yard. Jake and hubby talk about plane trips and canoe trips they took together.
• Wandering. So glad this doesn't happen. Hubby is content to be at home watching TV with our dog Ziggy, and since he hobbles now I can't see his wandering off. Because of our volunteer caregiver, Kenny, who checks in with hubby,  I can still work. However, Sally needs to be with Jake because he has this tenancy to wander and she has decided to no longer substitute teach.
• Striking out at others. Jake and DH had their argument that I wrote about last month, illustrating two behaviors that care receivers exhibit--Jake repeating himself asking where Sally was and hubby getting angry and swearing that Jake was doing this. 
• Dehydration and malnourishment. Hubby needs to drink more liquid to avoid a UTI. I am very concerned about hubby's small food intake.
• Immobility. Teepa imitated the walk. Hubby has that walk now. I thought it was just a physical issue! I recently read a description of vascular dementia, however, that included mobility problems.  Teepa gave examples of the correct way to move a care receiver with their walker. Hubby at times still uses his walker, although goes to the chiropractor only every two weeks now.

One of the sponsors of the free workshop, Senior Helpers of Lakeland, gave us a Teepa Snow DVD that covers more material including how to relate to care receivers at various stages. I listened to it while hubby slept early one morning and will use that tape and this workshop content to help guide me in my journey. 

Teepa Snow Workshop, Part One

At the workshop that Sally and I attended Thursday, Teepa Snow could explain communication with our dementia loved ones "like no body's business" and kept her audience fascinated the whole day. She visualized, she demonstrated, she imitated, she engaged the audience. The ultimate dementia coach--that she is. 

My day started with the challenge of getting hubby shaved and showered since Kenny has been ill and not able to do this. Kenny has pleurisy now and hubby hadn't had a shower or shave for eight days, hate to say. (Kenny's mother has graciously helped with pills and lunch while I work and Kenny was recovering, but I wasn't comfortable with her shaving and showering my husband.)  I hated his beard at church on Sunday, but now it was really bad. 

Hubby was in the bathroom when I woke up--the place where he needs to be for his shave and shower. I moved in ready to shave a man for the first time in my 69 years. 

I am going to be Kenny today for you, Sweetheart, I announced. 

The trimmer and the electric shaver I had bought this last year for hubby doesn't work on him--razors are in his long-term memory. Kenny had instructed me to use the cheapest razors: Lather up and shave down on the face. Shave up on the chin area. Fill up the sink with water to rinse in between strokes. 

Meanwhile I started the shower to warm the water and then turned it off. When the shaving was done, it was not hard to get hubby in the shower with the grab bars. Then I turned on the shower water and was even able to use shampoo on hubby's hair. Actually I got into the shower with him. 

At a break I told Teepa about my success that mirrored what she was instructing us about working with the brain of someone with dementia. I know more about their stubbornness, the whys, and how to deal with it because of our day in her workshop. 

So much came together for me in this workshop. Thanks so much to our local Alzheimer's Association and local sponsors for putting this event together. Thanks to Grace Manor in Lakeland for keeping my husband and Jake during this event. More on what I learned and how I am applying it in the next post.