And Then We Had Tea

Bill and Tim Brantley

It snowed last year too: I made a snowman and my brother knocked it down and I knocked my brother down and then we had tea.  - Dylan Thomas

You can blame it on a social media platform once again for a reunion in our home. It surely intrigues me how you lurk into peoples lives, view their pictures, and read their news to learn that your lives not only entwine, but your needs do as well.

WB is the eldest son born to J.W. and Helen Brantley and Tim, is the youngest. These brothers have been estranged for many years, but whatever their issues, those problems were laid to rest at our kitchen table last evening.

With more in common than I ever suspected, their physical ailments are surely complications of their trade. Complaints from Tim of back, hip and shoulder pain and I felt like WB had a body double as we treat these ailments daily. Also nearly identically mirrored, were shared opinions and goals for themselves and for their children.

WB struggled to express his feelings last night and ironically, I found Tim to be sharper than I ever remember. His knowledge of all things health, government and the law astounded me. Perhaps we have always had something to talk about and never gave it a go. 

Tim's struggles with finding the right doctors, coping with the funds needed to purchase the prescribed medicines and navigating the grief of losing his mother were just a few of the issues I deal with daily for his brother. There were things I knew that could have helped him and there was information he shared that would have already made life with WB and the Alzheimer's less complicated.  Hopeful that this reunion will ultimately result in an increased quality of both their lives and the time they have left to live it.

I appreciate him traveling to see Bill and was relieved when they arrived, as WB had been pacing the floor all day. From the door, to the windows. Sitting on the front stoop for hours and unable to nap. Lifting the lid on the stock pot each time he passed through the kitchen to check on the roast I had been simmering.

Bill had reached out to Tim before Helen's passing when he learned of Tim's scheduled heart surgery nearly a year ago and received no response. Not sure where the wires got crossed, but I find my husband eager to reconnect to people he's lost touch with. Guessing it is the dementia, but perhaps it is his soul, wanting to see and share with the people from his past. 

One thing is for sure, I cannot be certain that WB has the capacity today to understand the plight of his brother's health condition(s). With AD, the patient too often has only the capacity to concentrate on their own selves. Two brothers with extreme needs with very similar opinions, closed off from nearly everyone but their immediate family.

Ailments aside, I found two brothers finally grieving (together) the loss of their mother and brother, Jimbo. It was precious for me to see Tim finishing WB's sentences while maintaining patience, respect and a high regard for his older brother. No bitterness or animosity, no rehashing or revisiting of problems, no mention of it.

Only a tight and heartfelt hug near dark and a promise of visits in the very near future.

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

What's up with the water?

Once again, we encounter new things to cope with. Random incidents and actions with Alzheimer patients that are not in any playbook I can find.

Lately, WB has been extremely calm and amiable and I contribute every ounce of that to the perfect dosage of medicines and our continuous, never ending adjustments in the home.

WB's oldest daughter, Susie, is in from Boston for the rest of the week and has her youngest daughter, Meghan, in tow. Meghan is on Winter Break and wanted to make the trip to Alabama this month. She didn't spend a lot of time with us growing up and I appreciate her wanting to be here now. The South is definitely pulling at Meg's heart.

We stayed up late last night to watch the television shows that she likes, eat the ice cream she hauled in and accommodate her ferocious reading habit. It is uncanny how much she is like Kate with the reading. I've always said, "love to read and you will never be bored", but these two take it to another level, altogether.

I check in on WB several times a night and lately have been finding the water running in his master bathroom sink. This morning early, I crept in to take a peek and found it on at full throttle. Must have been running since at least 3:00 am. Thankfully, the sink was open, but that is not always the case. 

How does one lock down the spigots?

Today, the skies are hazy and filled with smoke. I am not convinced it is the wild fires north of here as it smells like a house fire to me. That is a hard smell to forget.

Movies today and then more activities with Susie, etal. No real plans, nothing set in stone, just the promise of having family here for Willie Bill.

My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

A Fish Tank For The Fisherman

Had I known that he liked them, this would have been settled much sooner than now. It was not until our stay with Mike and Joni that the issue came to a head.

They had recently set up a nice fresh water aquarium in their den and it was alive and sparkling when we arrived. I thoroughly enjoyed watching the fish and it was truly relaxing, however WB was mesmerized! 

Just love that word.

Sometimes I find myself mesmerized by certain things, but not too often. Mostly I think I have just about seen it all. For WB, we need him to be mesmerized with something. So many idle hours, so many things he wants to do and cannot, so many times I can tell his anxiety is exacerbated with boredom.

He mentioned many times how he liked their aquarium. Then he said, "I want one of those". BINGO

When he says he wants to go hunting, wants to go fishing, wants to drive, wants to buy a boat ~ it all results in the big fat NO. Zip, zero, nothing, nada. How discouraging that must be for him.

But the aquarium, now that is something I felt we could do something about and rather soon. The plan was for the kids and I to go in together and make it happen for his birthday in February, but he would not let it rest. Moving furniture around to make space for him to either enjoy by sitting in his chair or lying in bed during a cleaning frenzy last week only made it worse.

Of course I must research it a tad only to find that an aquarium is recommended for Alzheimer's patients as it calms aggressive behavior, eliminates stress, holds their attention span and helps with eating patterns.

Once again, that is not in any books I've found on daily living, but I did find these:

http://www.articlesnatch.com/Article/Freshwater-Aquariums/1023722

http://www.sciencedaily.com/releases/1999/07/990716071547.htm

And excuse me, but where with this venture was there a manual that said you will most likely spend money you did not plan on when setting it up. Kit, tank, hood, light, filter, pump, hose, gravel, background, decorations, chemicals, salt, thermometer, heater, water test strips, food.....forget the fish, that is the least of it. Katie Bug and I have definitely exhausted our allowance this month.

Was it worth it? Heck yea. Would I do it again? Absolutely. We have hit the ball out of the park with this new treat.

It took Kate, Michelle, Hunter and I to get it together and thank goodness Hunter had some experience. Two great friends offered me their 55-gallon tanks, but am simply not that brave nor ready to take on that much responsibility.

Today, we have 6 new very small and very cheap Tetras currently enjoying their new home as I patiently wait on them to die. WB, on the other hand, is asking me when the bigger fish are  coming. I've done the math on the total gallons versus fish count for small community fish for beginners and assumed that is what our program would be.

That said, I assumed wrong. So I then start thinking perhaps 4-5 Angel Fish or Barb on the semi-aggressive side. Wrong again, WB's talking BASS.

JustBrantley

The party's over, literally.....

Home and settled back in, we are going to Tuscaloosa today to finish up moving Kate into her new dorm room with her new roommate. What a relief this is and a blessing that the new roommate is already a friend of hers. 

Sad but true, that if you are a smart, cute and sweet young lady ~ well, unfortunately that creates a problem for you. She will learn, however, not to judge a book by its cover and other great life lessons along the way. Most importantly, I believe this has taught her how take the issue to the woodshed. 

We were so proud when we received her first semester grades and WB has them printed and sitting by his bedside table. Could not be more pleased with Kate's study habits and the goals she has set for herself. However, we are not pleased when the drama department descends upon her living quarters thereby potentially impeding her progress. There was one specific thing we agreed upon when she left to live on campus ~ education first. 

When she confided in her older siblings, they too advised her to, "take no prisoners". Family trait, I suppose. We will do anything for anybody within our means. We take it, take it, and take it some more until the goozle is full. Then, when it does not improve, we cut it out completely. We do not solicit confrontation, so that obviously translates to some as "you can treat me  in any matter you like." Unfortunately, when we have had enough it is 'Katie bar the door' and sometimes downright scary.

So, improvements in that department for sure. A step in the right direction for Kate as this New Year brings a new class schedule, a positive environment, yoga, a "new do" and a whole plethora of new things.

The Alamo

Hunter and Kate at The Alamo in San Antonio

Typical Fredricksburg Landscape

Downtown Fredricksburg

Luckenbach, TX Waylon, Willie and The Boys (Hunter, Kate and Joni)

Riverwalk, San Antonio

I can tell that being on holiday for a month greatly energized her. She, like all of us, enjoys  traveling; by train, plane and/or automobile. Its something we have done all of her life and I remember her in diapers for her first cruise of the southern Caribbean. Even though our traveling roadshow this year took us through familiar territory, we managed to incorporate new things to make it interesting.

Thinking about The Alamo excursion makes me want to gather up the ingredients today for a Texas favorite, King Ranch Chicken ~

1 (4 1/2- to 5-lb. ) whole chicken 2 1/2 to 3 tsp. salt 2 tablespoons butter 1 medium onion, chopped 1 medium-size green bell pepper, chopped 1 garlic clove, pressed 1 can cream of mushroom soup

1 can cream of chicken soup
2 cans Rotel
1 teaspoon ground cumin
1 teaspoon chili powder
3 cups grated sharp Cheddar cheese (Monterrey Jack)
12 (6-inch) fajita-size corn tortillas, cut into 1/2-inch strips

1. If applicable, remove giblets from chicken, and reserve for another use. Rinse chicken.

2. Boil chicken until done. Remove and reserve 3/4 cup cooking liquid. Strain any remaining cooking liquid, and reserve for another use.

3. Preheat oven to 350°. Melt butter in a large skillet over medium-high heat. Add onion, and sauté 6 to 7 minutes or until tender. Add bell pepper and garlic, and sauté 3 to 4 minutes. Stir in reserved 3/4 cup cooking liquid, cream of mushroom soup, and next 5 ingredients. Cook, stirring occasionally, 8 minutes.

4. Skin and bone chicken; shred meat into bite-size pieces. Layer half of chicken in a lightly greased 13- x 9-inch baking dish. Top with half of soup mixture and 1 cup Cheddar cheese. Cover with half of corn tortilla strips. Repeat layers once. Top with remaining 1 cup cheese.

5. Bake at 350° for 55 minutes to 1 hour or until bubbly. Let stand 10 minutes before serving.

Enjoy!

The Child With The Best Toys Wins.....

It was roughly 14 years ago that WB, Kate and I packed Mikie up and moved him to Kerrville, Texas to attend Shriner University. Enrolled and settled in, I not only sobbed, but wailed the entire way home. Some 950 miles and about 16 hours of drama which probably traumatized my then 4-year old baby girl. Do kids that age really know what parents go through when sending one off to college, one who you know is not ready to leave the nest? 

Mike thought he was ready and WB was more than ready. I harbored a tremendous amount of resentment until I realized several years ago that Mike had forgiven his step-daddy.  I can now forgive Bill for never wanting anyone or anything to interfere with what he perceived as time for him. He was always selfish that way and still is. Some things will simply never change.

Mike and I were together and mostly alone until WB and I married. With our nuptials came a whole new program. Within just a short time span during Mike's adolescence, there was a house fire, a baby, a new family, a new house,  an adopted daughter from down the street, a drivers license, and a different level of  responsibility for his mother. My time for him once constant became partitioned off into tiny sections, here and there. From an only child with all the attention to one of 7. 

 Bill had 4 children (Susie, Amy, Wade and Brandon) and I had Mike. These were our natural children ages 13-28 when we married. Then add a baby and another teenager.

The dynamics of this blended family were stressful from the first day. I remember walking in the door from our Las Vegas honeymoon with a call from WB's ex-wife, "welcoming me into the family". How dare she! It was from that moment forward that I began trying to create a wall around our unit to try and separate the then from the now. It is very hard to create new traditions with kids already old enough to be married with children of their own. The new wicked stepmother took some heat, for years and years and years. 

I was a young, strong and independent single mother and not at all totally innocent. I owned my own home, was successful in my business and was substantially full of piss and vinegar. Early on we had struggles, as it seems everybody was jockeying for position. Not only did we have children's' feelings to consider, try throwing in a couple of ex-wives.

The constant innocent throughout was Katie Bug. I couldn't fix what had happened in the past and it was evident to me that WB and I would never agree on the parenting of the older kids.  She was something and somebody we could rally around. So we settled in on raising Kate, together. She absolutely flourished and is a constant reminder to all what that level of parenting produces. 

It is not necessary at this writing to produce a dossier of our dedication or her accomplishments, only necessary to mention this to get us further along in the story......

That she has experienced heartbreak over the last several years is an understatement, but WB and I unknowingly prepared her for most anything life decided to throw her way. She may have found it unsettling that I did not wail and sob when moving her into her dorm room a month ago today, but that day was a most joyful and exciting time for us. Bittersweet sure, but this was something two under-educated rednecks had made right, together.  

Well educated, well traveled, exposed, abundantly loved and over-nurtured. My motto, "the child with the best toys wins" does not mean Barbie dolls and electric ATV's. Instead, its definition to me was giving it everything we had and concentrating on what we could do something about. Still no wailing and sobbing here.

It is uncanny to see how this family is pulling together around WB's illness. One may wonder why it could not have happened sooner and then perhaps recognize that it may have been impossible. At first I am sure we struggled with denial, some shame and remorse, but now it is simple acceptance. This is what it is. We can make it better for each other, but we cannot make it go away.   

I have opened the door to 'receive' the gifts of love this family has for their Big Daddy.  Each of us carry special and sometimes separate memories of Bill's influence on our lives as his legacy is far reaching and his antics renowned.

Postings continue to change in scope as I feel the need to digress from time to time. Without traveling back, I cannot truly and accurately expose how we got to where we are. Additionally, if the blog is only about the illness, it will never provide the bread crumb trail for this or any other family to follow.

Just last night I received an email from a dear friend who said, "please call me, I am worried about Bill." WHOOP, I am sorry friend, but that's our job. If you are paying attention and spend any time trying to understand this, you will find that if you're doing any worrying, it needs to be going on for the caregiver(s). It is why each and every visit to the doctor ends with this question to me, "how are you doing?" It took me a while to get, but now its as plain as the nose on my face. If the caregiver throws in the towel or breaks, the whole thing comes tumbling down. The patient eventually knows nothing or comprehends the sacrifice. I do not wear this title on my chest as a badge for honor or glory. Once again, it just is what it is.

 
Six of our children know this and are taking on as much of the responsibility as they can. Some are scattered across the country with families of their own. Kate understands that this portal is part of mama's therapy and reminded me just the other day that I needed to update her daddy's blog. She knows that I abandoned my personal space to chart daily living with AD, therefore these diatribes will try and encompass it all. It is interesting to read back over posts from just a month ago to see the roller coaster of emotions we go through. Anger, fear, helplessness, resolve, understanding, acceptance. WB would say its like "Pete and Repeat". He's right, it will surely repeat itself again.

I cannot expect an elevated understanding by all and still try and accept today the things I can do something about. It is certainly with remorse and grief that we live with daily, but it reminds us constantly that fate does not discriminate.

That said, I expect the baby of this brood to eventually query the rest of her family, gather all of this fodder up and then someday package it into a tightly woven memoire. Actually, I expect no less.

A Bunch Of Brantley Girls And Foster....

Miranda, Eden, WB, Natalie

WB and Amy Sister

Yes, "receiving guests" is going great. Guest Book is all laid out and my nose is constantly itching. Its was a busy week last week and I suspect the same for this one.

Praise the Lord! The "Social Worker" has landed.

Because I was 45 when WB was diagnosed is my excuse for knowing so little about Medicare, The Donut Hole, Unemployment Compensation, etc. as I am convinced now that I would have been better prepared had we not been thrown into this quagmire overnight. 

It was our company accountant who finally said, "hey, have you filed for your unemployment?" She posed this question knowing that I had worked full-time without lapse since the age of 16, and had paid in to all the right agencies per the law. 

Because WB was 61 at the time, we filed for him Social Security Disability, instead of just early Social Security retirement benefits. This came in a record 51 days and I have since learned  that was probably a record and doesn't happen quite that fast unless you are blind or have Lou Gehrig's Disease.

Then, for the next two years, he was in the Medicare Gap since he was not of legal retirement age. That means, two years before Medicare picks up part of his medical coverage. That put him into what is commonly referred to as the Donut Hole. 

I envision folks studying this, as I believe I would have, to find the best Medicare supplements for Dr. visits and medicines, but I did nothing of the sort. Didn't know I needed to and that is not like me. Typically, I study everything to a fault. Lots of things would have been beneficial had I known and there is nobody out there to show you the ropes. So, I paid from our retirement hefty monthly health insurance premiums and large sums every month for the medicines not covered. By the way, Alzheimer's medicines are expensive. 

We were 14-months into this when I learned that there are pharmaceutical companies who will sponsor patients through State agencies to get you the medicines and then other opportunities for health insurance, not quite so expensive, for people in this situation (WB on SSDI with a wife as caregiver and a minor in the home).  

So, during WB's hospital stay last month, I was enlighten by his head nurse. She shared with me her own father's bout with Alzheimer's and what her mother and family went through. She literally began mapping it out.

She went on to say that I first needed a referral from his Dr. to get a Home Health Psych Nurse coming to visit. Then, I needed to request from her a Social Worker and an Occupational Therapist. I had always thought that Home Health Nurse meant Hospice care. No so! 

You would think that the medical profession and the government sponsored agencies like Medicare would want a patient at home for as long as possible to decrease the expense of long-term assisted living, skilled nursing or nursing home care. I am finding that this subject matter may create great debate. WB is not ready for skilled nursing or a nursing home. Or, I am not ready for this. Regardless, when the Psyche Nurse said last week, in the mixed company of the family and pets, "Let's start looking for some Adult Day Care" I thought WB was going to strangle her ~ I gasped for breath and the dogs went wild. (Which is why I posted the comment about the Psyche Nurse needing a Psyche Nurse)

Preface this by saying that unless you have exhausted all of your retirement, savings, property, etc. you may not need to read on. For those who were able to hold on, you may be looking at roughly $6500 per month in assisted living care per person. WHOA. Hopefully, you would have had some kind of long term care policy in the bag as well. If you don't, perhaps now would be a good time to look into that. Then, to qualify for State assisted Medicaid, the look-back period is 5 years. You just turn over your house, insurance, whatever you've got and they will give you what' is left after your loved one passes. 

Yesterday, when our Social Worker came to visit, the angels parted the heavens and I began to see the light. Of course, I cried most of the way through it. The thought of trying to find a way to explain to WB that he needed to start going to a place at least a couple of days a week frightens me. I now refer to it as "Socialization and Communications Group Therapy". That is completely made up. There is no such animal or place, but it sounds so much better to me than 'Adult Day Care'.

Our new Angel/Social Worker will be screening places around town that present the right environment for WB to visit during the day. I have promised to go and stay with him to make sure he likes it. The environment we are looking for would be retirees around his age, perhaps some suffering from the same symptoms. He desperately needs to interact with others in the same condition at about the same stage. A place where he can have coffee, participate in activities, make new friends, and socialize with others would be such a blessing. Finding this may be a challenge, but doing this on my own could take months and months. Our Angel is doing this as we speak. 

Remember, the dynamics for Early Onset care and the caregiver experience are different than late onset. Late onset normally does not include the abrupt end to a career, a younger spouse and children in the home. 

She really is WB's social worker. But she is definitely my person.

The "receiving guests" program is really going well. Today, WB's niece Natalie will be visiting with her new baby, Foster. I hope Miranda and Eden will also stop by. Natalie and Miranda are the daughters of Bill's younger brother, Jimbo, may he rest in peace. We lost Jimbo to cancer several years ago. It was a blow to everyone and WB has never gotten over it, speaks of him often and misses him desperately.

RIP Uncle Bo

Just learned last night that WB's mama (Nanny) has landed in rehab after a hospital stay. It seems she had either another stroke or a Parkinson's related seizure. I tempered my reporting of this as the family knows that Bill cannot accept information like this head on. Generally, I get the message and dole it out to him as I think he can take it. Yesterday was not the day. Today perhaps, we will see.

Katie Bug and Nanny at brother Wade's wedding

Readership is up to nearly 600 visits. I am honored to know the depth of understanding, grateful for our friends and family and their participation, increasingly aware of those out there using my fodder to spread the word. This is my therapy and I encourage anyone reading to comment back with ideas, resources, books, etc. as we continue to weed through the plaques and tangles.

Keywords: Social Worker + Alzheimer's Dementia,

My name is Rhonda Brantley. My husband, Billy Ray Brantley, has Early Onset Alzheimer's Dementia and I am his caregiver.