Does Caregiver Mentality Ever Change?

"You've been a caregiver all your life and that has got to change!" This was the text message I received from the youngest daughter last week.

On the heels of a post made about taking care of myself first as it will be impossible to take care of anybody or anything if I cannot find a balance AND understanding now more than ever that when you have tended to the needy with great zeal the result may be that you've created the needy....

I spoke about worry and the desire to be free from it. Faith, and how to attain it. Perhaps a message to myself to appreciate the endowment of my new freedom or just a good old fashioned pep talk. After reading so many great articles on caretaker experiences over the years, it is abundantly clear to me that if the caregiver is not taken care of, the caregiver cannot perform the best care.

So how is that going for me?

Insomuch as it sounds like a great plan, the crux lies in what transpires when in the throws of giving the care. There is no time or opportunity to seek therapy, attend group therapy, have your hair and nails done. There is no offensive position on the field.  

My caregiving experiences did not begin with Bill's illness, rather it began some 44 years ago when my brother was born. With so much time in the seat, it makes me wonder how one sheds the thick second skin after so many years and how hard will I search for others to care for?

A recent article from Gary LeBlanc noted, "Once the human heart takes on the difficult but worthy task (and identity) of becoming a caregiver, it will remain a caregiver."

If the caregiving experience over my lifetime now remands me to this identity and life mission, I must be better prepared. Should this plight be embedded so deep in my psyche, there may be little else to do but find some way to manage it.

I will never forget Bill's cousin whispering in my ear after the graveside service, "You are going to experience the most unique emotions; grief and relief."

He was right. Grieving for years at each loss in the steps of digression and relief for the end of his suffering. But, I found fulfillment in my abilities to make his life better. Just as it fulfills me to satisfy the request for a special meal or to plan an event - it completes me.

Saying out loud everyday, "I shall not be a caregiver, I will not be a caregiver, I do not want to be a caregiver" doesn't seem to be working. Upon reflection, more specific prayers are needed. Perhaps it's
that I know that I cannot be a significant and adequate caregiver at this time. That my plans to take care of myself first and worry less for others is unrealistic, but for a spell is in order. Just a vacation from the routine, as it never occurred to me until Kate said it...."throwing the caregiver mantra and way of life out the window may be impossible for me to do."


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

The Caregiver - Worry and Prosperity

This world is crazy. Young people shooting babies, people shooting people in hospitals, low morals, drugs, theft - and this posting will surely be out of sequence, out of whack and bounce from thought to thought. I am flighty that way and my processes reflect it. It's the best that I can do today...

I'm a worry wart. Supposing I get that straight from my grandmother, she worried and worried and worried. She made her self sick worrying. My Uncle always said, "Some people just can't handle prosperity." WOW, I'm finally getting it.

It's my road and mine alone...

I've really found it hard to come back to this place. A place where I found refuge so many times before. Perhaps like a sedative, it kept me sane and thwarted the 'come aparts'. If I could just get here, get it written down to something I could see, the feelings of helplessness seemed manageable.

Was I wrong to think that the need to seek shelter here would end with WB's passing?

How can it be that it's only been two months when it seems a life time ago that I heard his voice. His last audible and most frequent words and phrases, "Honey, Katie, I love you, thank-you, I'm so sorry" while the same carton of Blue Bell ice cream still sits in the freezer. Not sure I will ever feel the same about ice cream.

I pass through his closet that adjoins the laundry room many times a day with not much change except the ever rotating section of XXL Guy Harvey t-shirts that I wear to sleep in each night.

"Keeping myself busy with things to do, does not keep me from thinking of you."

Knowing that if I cry, the others will. If I go to bed and put the covers over my head, the others will. If I shut myself in and appear sad and beaten, the others will. If you see me and I appear happy, please know that it's my duty. When you've been required to be strong for so long - you may be broken, but you don't know it.

Gracious and thankful to have so many invitations for dinner, a movie, an out of town jaunt. I am not comfortable with much of that. If you're around too many people too often, the subject comes up. How could it not? I was him and he was me.

But, I am getting on with this quiet space. It makes it easy to talk with him and ask him questions. Tell him about our day. Let him know we are going to be okay. And, only wave to him on the days I do not actually drive through the cemetery entrance (just up the road).

Where I find comfort here, our baby has not. I see him here in every chair, curled up in the bed, the rubs on the door casing where he scratched his back. Believing this will change, I resisted the opportunities to evacuate and opted to stay with what we knew. Does the bear go back to the same cave? I am trusting and praying she will begin to appreciate the opportunity with less anxiety and find home was a place that was built for her.

I knew that life would go on, but like so many other things - until you live this, it's hard to describe. I thought I knew what it was like for people to lose their job, until we shut the business down and I didn't have anywhere to go to work. I thought I knew how the constant care for an Alzheimer's patient would be, I knew the inevitable would come, but foolishly thought I knew how I would handle him not being here.

No matter how much you hear, you don't hear it. And, you'll never pick up a book to read on loss until you've lost it. We are all so uniquely different that my advise today is that you just jump on the train, girdle yourself up for a rough passage and be prepared to ride it out.

Thanks, Dorothy Sander, for the inspiration. http://www.huffingtonpost.com/dorothy-sander/the-caregivers-silent-bur_b_1570584.html


My name is Rhonda Brantley and my husband, Billy Ray Brantley suffered from Early Onset Alzheimer's Dementia. We lost him on Easter Sunday, 2012. This is the best shot we have at documenting daily living.

Navigating Turbulant Waters

My feelings may certainly change, but today I do not believe there are certain and absolute stages of grief (a list) or that you must go through all of those stages to cope, to heal, to move on. However, most telling is that the navigation of our own stages of grief will influence the decisions we make, the relationships we are able to nurture, the rest of our lives -  in general.

Is this the 'valley of the shadow of death'?

Instead, a friend describes it as waves in a turbulent ocean. With each wave, we are delivered a different emotion just as unique as the wave itself. I believe that too is an accurate assessment.

The relationships that we had with Bill (Dad) are each as individual as our own DNA due to birth order, gender, age and the stage he was in his life. Therefore, how could you subscribe to a notion that the stages of grief for each of us would follow any specific pattern?

Last week, I began searching for books to pass along to help us through this process. What surfaced was book upon book with recommendations and advise on navigating those 'perceived' stages. Much attention is given to "Fatherless Daughters" and "Fatherless Sons" and even more on "Grieving a Long-Term Illness" and "Grieving Sudden Death". You can check all the boxes as all apply.

Even though we can accept that our Mother was our first love and that bonds with our Fathers are unique, our loss will be even more unique that that. Bill was any and everything he needed to be. And not only a father to our own children, but a father-figure to many - and at times even to me, the wife.

Since my own father-figure was such a moving target, the manner in which Bill 'fathered' his children contributed to the unrelenting admiration and love I have for him. Obviously then, my own early loss dictated and influenced my future.

Then someone recently asked, "What will Rhonda do now?"

Obviously, Bill made such an impact in life, that his survivors were/are in some ways defined by that (to others). That without him, we must now find our own identity. Then, after a conversation with Little Miss at 3:00 am this morning, I find myself in overdrive today to separate our purpose in his life (involvement in the businesses, life, care giving) and the influence and imprint he left.

For most of this immediate brood of 8, he was the center of our universe. Some how, and without recognizing it, he uniquely and lovingly demanded it. But, I also know without doubt, Bill Brantley would never want the things that happened to him or the decisions he made to ultimately influence our lives to a degree that it defines us.

This is what I do not wish for our youngest...

"Hi, I am (NAME). I am a (OCCUPATION). I live in (CITY, STATE). I am (MARRIED/DIVORCED). I have (NUMBER OF CHILDREN). And, I lost my father when I was 19."

"But, I really lost him at 14 years of age when he was diagnosed and I began the grieving process. Then, we lost most everything to care for him. My life changed on a dime. Everything I knew was gone and something else kept leaving every day. I experienced loss everyday for many years. Now I feel lost."

This cannot define her.

Even though I recognize that each of us had a unique relationship with him and will obviously have very special feelings and memories, I separate Little Miss from the pact only because of her circumstances (age, timing, life experience, an older Dad, more end of life time with him).

That he may never see Little Miss graduate from college, or walk her down the isle does not mean that he did not influence it. That he will not be physically present for the birth of more grandchildren or great-grandchildren or personal accomplishments is a great loss for us, as the joy he possessed and showered us with was a gift; the affirmation of his love, his encouragement, an unbridled acceptance of our misgivings, the total package.

Personally, I believe that instead of dwelling on the notion that 'he will miss it', I will encourage us to preserve the memories by sharing the feelings we had with him during those milestones. I cannot even pretend to know what this looks like or at this point in time how foolish this may sound in a week/month/year.

But, if you're wondering what "Rhonda will do?" Now that reality is setting in, I'll most likely:

1) Think it and dissect it to a fault, then
2) Embrace it and navigate all the advise and commentary.

It's what comes next that's full of uncertainty. That I may be able to understand and cope better this week, that the oldest siblings may be able to get through this with better skill-sets, that levels of guilt or remorse may influence us differently or that this sudden absence will affect us for the rest of our lives are questions we cannot answer today.

So, how do we navigate these turbulent waters after walking through the valley of the shadow of death?

Perhaps we will stumble upon the right tools (therapy, books and manuals, mediation, church family). However, it is my belief that as long as we are willing to stand on the edge of the surf with Bill's influence in our hearts, the life raft we throw each other will be what defines us.

It will most definitely define me.

God gives us memories, that we may have roses in December...

It's been two weeks, today. Two weeks of the broadest wave of emotions. So vast, so unusual, so raw I cannot find the words to describe them.

I begin posting for solace after Bill's diagnosis in 2007. On the worst days, just writing it down and putting the angst into words was therapeutic.

Then, I found myself with nothing to say. The realities of what loomed ahead were just too ugly to confirm. To write it all down was just too REAL. Written documentation always is. To have to explain where we were and his level of impairment began to invade the respect and dignity we fought so hard to protect.

Alzheimer's doesn't really get you. It's what happens because of it. We knew early on that Bill's dementia was probably mixed and that an inherited vascular condition was likely the culprit. In the end, they're all treated the same. You just have to pick your battles and I am the most guilty for never fussing about the pleasures he derived from eating well. At the end of the day, if that's what makes you happy - it just made sense to me to load him up with a second helping. There are no good ways to explain to an AD patient how many calories they're allowed.

It was Easter Sunday. Kate was home from school and took off her regular Sunday shift to stay at home with us. I cooked all day and cooked more than I normally would, as Bill moved from the kitchen to the sofas - back and forth all day. He was happy, happy, happy. Mama was in the kitchen and Katie Doll was at home. He talked all day about how good it smelled, when it would be ready, the dates of our next road trip. Bill and Kate shared the batter from the mixer and bowl before the cake went into the oven. He took the trash out several times and promised to try and shower before bedtime. My regret is not documenting this with pictures and the camera was out as it always is.

Sundays are my days to study and work as the phone rarely rings. So dedicated to that day, I'm not sure I ever turned the computer on. Breezy and warm, the sun was bright and high in the sky all day.

The rest is still a blur, and surely God's way of doling it out in increments we can handle. Is that even possible? It's been shared that we will have bad days and better ones.

Just as we shared here to get us through the hardest of times before, I am hoping to rely on this platform to preserve our precious memories and share with caregivers the rest of the story. Things change so fast, but some things will remain the same. Our family is closer and our friends are dearer to us than ever before. In his last days, Bill was the most grateful, the most humbled and the most loved. We were the loves of his life and he was ours.

We laid my precious husband to rest on Friday, April 13, 2012. Below is an excerpt from our children...

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

It's a shame, really. And, a pity...

...that I have not visited my own diatribe in months. So many reasons really, now that I think about it:

• Sometimes saying (writing) it makes it more real.
• It was created as a suggestion for therapy, but sometimes it just gets too depressing.
• For a long spell we were in another lull while holding.
• I am spending my words on other blogs.
• Time has become such a commodity.

Many things to be thankful for this season. Kate is pushing through her college education as if it were a race, moving into new digs, and working a part time job since June. She still comes home on Fridays, but works most of the weekend leaving out on Monday morning for a noon class. Kate knows that if too many days go by without her daddy laying eyes on her creates issues and manages her class schedule accordingly. She's adding a minor to her schedule and a few soft courses as everything on the horizon for her revolves around her major. Finishing up the first semester of her second year and already 61% complete amazes me. Smart, focused, driven. Just like I like it.

We recently had a scare with our daughter-in-law, but seem to have thankfully dodged a bullet. After a six weeks of testing, nothing significant was found to explain 3 spots on her brain. Joni is a trooper and has a Trojan will. When she started nursing school, she announced that she would be concentrating on geriatric care (and that she could one day help me with Bill). Joni gives large and gives privately and is like nobody else I have ever been around. In her heart and in her body, she knows something is just not quiet right. Knowing that she had anything going on in her brain sent me into a tailspin. Having become very aware of what any kind of brain deficiency does to not only the patient, but everyone within striking distance seems to invoke slight panic....around here, anyway.

I prayed diligently for nothing short of a complete healing for Joni. God is good, that way. We have an understanding. He is fully aware that my pail is full. No doubt about it. Blessings come in all kinds of ways, I just have to remind myself to recognize them.

A busy summer ended with several days at the beach with our good friends, the McKays. This has become a yearly ritual to spend time with them on the most beautiful stretch of beach in the world. We left earlier for home than originally planned, as Bill began having issues finding the right bedroom. The longer we stayed, the worse it got. I would probably rather be at the beach than any other place in the world and only hope that before my time expires, there's a window of opportunity for me to soak up vitamin D without a schedule.

We had Andrew, Preston and Taylor Paige from Texas and Will and Meghan from Boston. House was full from June 1st until Labor Day. It is a joy for me to know that they want to come. We still don't do a lot, but I suppose we manage to find things they enjoy.

Susie comes from Boston every chance she gets and I cannot describe in words how wonderful that has been. To have someone to talk to until the wee hours of the night, someone who loves WB as much as I, who doesn't witness the daily grind, that sacrifices work schedules and leaves her kids, to just acknowledge and support us girls and then the bonus, she brings with her Maddie, Dalt, Meg and Will - it's been a wonderful thing. To know that she knows WB has nothing to offer, nothing to share, nothing at all and yet still makes the trek. I admire her. Any difference of opinion we have ever had is long forgotten as we focus on WB's needs. Another blessing.

Several days a week, Michelle wrangles WB for me, either taking him on rides or running errands. By the time he rises in the morning, I been studying for hours and she's taken over his first cup, the pop tarts and his morning medicine routine. It is a pretty tough job, but she can keep him entertained until at least after lunch. Michelle absolutely handles the heavy lifting.

Since May, I've been able to make one weekend trip to the beach with Sheri, a weekend trip to Memphis with the girls and one ballgame with Kate. Other than that, its pretty much all hands on deck. Sometimes you just have to get to a place where you know its going to be easier on everybody and resist at all costs "not upsetting the apple cart". It won't be easy with the sitters finally start coming, as WB just does better staying at home with the people he knows.

Moving on to the white elephant in the room, the reason the Blog exists at all, the main attraction...

It's just not good. You can dress it up, splash a little cologne on it, prop it up in a window - you just can't make a purse out of a sow's ear, which was once one of WB's all time favorite sayings. Not too much more to say about it except:

•  Can no longer organize the materials for a sandwich.
•  Can no longer cut his meat, butter his bread, ties his shoes.
•  Train of thought is down to seconds.
•  I could once finish his sentences, now I have no idea most of the time what he's trying to say.
• We pretty much communicate for him.
• Lots of crying and frustration.

I absolutely know without doubt the Alzheimer's medications are having little to no effect. However, he still never misses a dose as I refuse to chance it and daylight savings time is for the birds when there's an AD patient in the house. Just this afternoon at dark, he emerged from the bedroom fully dressed, pockets packed and dragging his shoe laces ready to head out the door. I'm not sure where we were going and it took a good 30 minutes to convince WB that we were not going to see "that other boy". He never could tell me who that other boy was, but it took a bowl of tomato soup and three grilled cheese sandwiches to get the cow back in the barn.

Just another one of those textbook symptoms, having slept in the den chair for three years keeps me pretty tuned in to the sun-downing and night wandering. Supposing now the meds it would take to keep him down all night would kill him outright, we just roll with the punches. At 2:00 am this morning and after hearing the biggest racket ever, I found he had moved the comforter and quilt off the bed and was having a Baptist pallet in the master closet floor. You may say leaving him there to sleep it off a great option, except for those damned consequences...

This is daily living, folks. Much like having a toddler in the house, its hell on wheels.And the stupid questions still keep coming, "How's Bill, is he getting any better?"

You're kidding, right? Just Google Alzheimer's. Please. Do it for me. Do it for yourself. Just do it.

His doctors, our neighbors, friends and people who you would never suspect have started opening the door to counsel. Kind words or just a look to let you know that they see the toll its taking and that it is okay to feel helpless. Never encouraged to take another route, just an acceptance that we're still in the weeds without a whacker. Ironically, I now see relief coming from those who recognize caregiver needs. As if to say, "we're shoring you up so that you can keep the vigil."

Since being blunt is one of my hallmarks or (faults), I see no reason to hold back now. You just have to get here to know what its like to see who's still standing with you. Then, you better have the guts to accept who is not.

Interestingly, this came out of my mouth tonight, "To know him now, is to love him most precious. A man who once feared nothing or nobody. A man who dedicated his life to his family and his children. Helpless and vulnerable. And of his antics he says, "I'm sorry, Honey." To which I now reply, "Not as sorry as I am."

The shame is that I see a shift in the focus. The pity is that I am in favor of accepting it. For most who are closest to us, who care and spend the time to really know what's going on, the question has become, "How are y'all holding up?" Upon reflection, perhaps they're starting to see a crack in the rock.

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.

Gail Sheehy must be living in the walls of the caregiver's home.....

Gail Sheehy: Managing Midlife Stress

by Gail Sheehy on July 26, 2011 ·

What midlife women can do to inoculate themselves against depression, obesity, and other chronic illnesses that come with raising children while caring for aging parents


Today’s midlife women should be much healthier and happier than their mothers were in the same life stage, right? Mom was probably less well-educated, didn’t jog or pump iron, and was clueless about how to handle menopause and avoid osteoporosis. Why, then, according to startling findings of a longitudinal study by Gallup-Healthways, do middle-aged American women now have the lowest well-being of any other age group?

One key reason is the physical and emotional stress of family caregiving.

The average profile is a 49-year-old woman who still has at least one child at home and works outside the home while juggling another 20-hour work week caring for an aging family member.

“I already had three jobs before my mother and father-in-law got sick,” says Bonnie Heath. Between dropping off and picking up her two children at different schools, she put in six hours as a substitute teacher, then rushed to her mother-in-law’s home to lift her from wheelchair to an SUV and drive her to physical therapy every day, then back to pick up her father-in-law for an appointment with one of his six doctors.

“I was never home in time to make dinner for my family,” Heath continues. She and her husband David had to give up the long walks they used to take after dinner, their only time to be close. Nine months after they abandoned their walks, Bonnie had gained 50 pounds. Her kids were acting out. Her marriage was shaky. She never saw friends. She staggered through her days in a fog of undiagnosed depression and slept fitfully under a burden of undone guilt.

This commonplace caregiver’s lifestyle is one reason that obesity, smoking, and chronic diseases — including depression — are steadily increasing in midlife women. They are less healthy than their mothers were at the same age. Between 40 and 70 percent of caregivers suffer from clinically significant symptoms of depression, according to the latest data from AARP. Chronic depression contributes to heart disease and degrades the immune system, which protects against all illness.

“If these lifestyles and the decline in well-being continue for women, we will see the first generation of women to begin losing the longevity dividend — five to seven years — they’ve traditionally enjoyed over men,” says Joseph Coughlin, director of the Age Lab at MIT.

What can a midlife woman do in everyday life to inoculate herself against depression, obesity and illness? Reverse the typically negative thought pattern of family caregivers I have interviewed:

• Why am I so alone? In fact, 61 million Americans are performing this most compassionate of roles. The value of their unpaid contribution to the economy has increased in only two years from 385 billion in  2007 to 450 billion in 2009. So, you are not alone. You are the backbone of our broken long-term care system.

• My family member refuses to let anyone but me care for her/him. Call a family meeting, but be sure to have a neutral mediator run it – a geriatrician, social worker, psychoanalyst, or care manager. Make sure your loved one is present. Everyone will hear the same medical facts and be asked what they can bring to the table to assist the primary caregiver so she doesn’t get sick. When Bonnie Heath did this, her husband’s siblings each took a day and the Heaths resumed their nightly walks.

• Why can’t I do anything right? To interrupt the drift into depression, before going to sleep write down three things that went well today and what you did to make sure they went well. This technique has survived placebo-controlled tests and proven to be extremely effective as a guard against depression if it’s done regularly for six months.

• I’m exhausted all the time but I can’t sleep. You need a happy hour, at least one hour, every day, to break the cycle of hypervigilance that keeps stress hormones circulating through your system. Go off and do something pleasurable for yourself. Take a brisk walk or bike ride or a   Zumba class. Have coffee with another caregiver, your best source of support. Watch episodes of your favorite comedy show and laugh out loud.

Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence.


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.

2011 Alzheimer's Disease Facts and Figures

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.

Raising the Bar

 

Crept outside this morning to get a picture of what Alabamians consider a "medium-sized" snow event. Thinking perhaps 3" and wondering what our peeps in the northeast think of this since they have been under siege and literally digging out for months. Then, I wonder about our peeps to the west and how they so longed for just a dusting. And much farther south, I ponder how my friends down under are enjoying warm and sunny days by the pool.

But mostly, I am enjoying the quiet. Everything is still and it was not until I loaded the pictures did I notice just how motionless life feels today. We are in a time warp, just waiting for what comes next. You cannot make a plan, set a goal or chart life's path.

This is not a self-pity day. It is a day when you can rise at daylight and appreciate the miracles in front of you. There is no other way to interpret it when you slip outside in pajamas and Uggs to document it. There is no second-guessing when the assistance of something larger than myself enables me to shrug off any resentments or missed opportunities, thorns and thistles, exhaustion and pride. Once again, I rise with a refreshed attitude wondering how many times this will happen. 

I stopped myself short last night of saying things that I have never felt, only to see how it would feel to say them. To say things others might say in the same situation, to try and feel how others do when feeling trapped in a time warp; selfish, self-absorbed and self-righteous. Unfortunately, I cannot pull it off, that other person is not me. Although I know a lot of people who put their own needs first and are in awe of their abilities, I cannot subscribe. Instead, I felt horrible stepping off into the "self" pond. Bite your tongue, Rhonda Brantley ~

But, to spend more time on myself, with myself, for myself is something I have decided to do more of. Before, those proposed actions have rendered psychotic breaks, pouting and resentment. Having never put myself first, I am going to at least try and raise the bar to a level playing field. I am thinking of re-scheduling the schedule. This routine has got to change.

First thing on the list is a warm and sunny getaway this Spring (solo). I will pack lighter than ever and suspect the camera kit to be the heaviest item I carry. In the past, vacations were all about where we would go when we got there, what would we do, where we should shop. I shall not be thinking about who took their medicine, who needs to eat, who needs sunscreen. This time, my most pressing concern when rising each morning will be asking, "what are we going to drink today?"

 

 
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.

Author Andrea Gillies on Her Mother-in-Law's Alzheimer's Descent

Rhonda:  This is exactly what I've been trying to say and some days cannot find the words. Excellent. Sent to me from a good friend knowing that I needed to read it and share with others I know who are experiencing the same.

Chris Watts

By Michelle Burford
 

Five years ago Scottish writer Andrea Gillies took in her mother-in-law, Nancy, who was then in the midst of Alzheimer's disease. Andrea thought she could simply nurture Nancy through her difficult passageway, but just weeks after Andrea moved into a Victorian mansion with her husband, Chris; their three young children; Nancy; and Nancy's ailing husband, Morris, the journalist encountered a much more cruel reality: Alzheimer's involves far more than memory loss or a little dementia. It's an illness that can rob you of your very identity.

In her new memoir, "Keeper: One House, Three Generations and a Journey Through Alzheimer's," Andrea tells the story of the crisis her family confronted -- complete with Nancy's dark moods, Nancy's unexpected rages and the gradual undoing of Nancy's grasp on reality. As her brain was pared away by the debilitating disease, Nancy, a former secretary and loving grandmother, no longer knew who she was or why she was with her family. The entire ordeal left Andrea with two questions: What exactly is the self, and does identity even exist without memory?

10 Tips for Caregivers

 Presented to me by the Home Health agency yesterday. I considered including only the issues affecting us at this time, then reconsidered. Readership is growing and perhaps due to so many who are dealing with some type of dementia in the home or family. There are many levels of deterioration, so to not include all of the tips seemed extremely selfish. Most of this we knew or have discovered, but still good tips overall.

TIP ONE:  Approaching The Patient

Approach the patient slowly and calmly.
Use Friendly tone of voice and facial expressions.
Make eye contact with the patient.
Face the patient when you speak to him/her.
Do not touch the patient from behind.
Speak slowly, clearly and distinctly.

Demented persons do not understand complex speech. Speaking slowly and facing the patient will increase the chance that the patient will hear sand understand you. Remember, even though patients may not understand, written or verbal communication, they do respond to the emotions of your voice and face. Do not ask the demented patient, "Do you remember me." Tell the patient your name first!

(The girls and I went through a safety session immediately following WB's first "run-away".  We continue to constantly modify our tone and expressions ~ this is part of our lives today)

TIP TWO:  Instructing The Patient

Use One-Step commands.

Use gestures to supplement words.

Patients with dementia cannot comprehend complex instructions. Example: Don't say, "Its time to eat, Mrs. Jones. Lets get up and go to the dining room. Where is your walker?" This conversation is too lengthy. The demented patient cannot understand all of this. It will be frustrating to him/her. You might say instead, "Mrs. Jones, stand up." After she stands, "Mrs. Jones, here is your walker" then, "Mrs. Hones, it's time to eat." Then begin leading her down the hall. These are one-step commands. This patient is told one thing at a time. 

(WB does not use a walker and can find his way around the house, but can never remember where the bowls, spoons, etc. are. We just say, "Are you hungry?" and he comes.

TIP THREE:  Dressing The Patient

Use One-Step commands.

Give the patent a limited choice of clothing to wear if the patient can still choose.

Limit the choices to two items. Too many choices confuse and frustrate the patient.

Use a consistent method of dressing the patient every day.

Use gestures and encouragement. Show the patient what to do.

For example:  Dress the patient's upper body first, and then go to the lower body. If the patient can still dress himself, hand him the articles of clothing in the same order - only one at a time.

(WB wears the same thing everyday. Makes it easy. If we're going somewhere that requires a different outfit, I will lay it out and generally have to help him get it all together and on his body. I believe he actually limits his choices himself to make it easier on all concerned)

TIP FOUR:  Bathing The Patient

Try and bathe the patient at the same time each day.

Use One-Step commands and go slowly.

Talk to the patient reassuringly during the bath. 

Explain what you are going to do in short, simple terms.

If the patient is afraid of the shower, try the tub. If the patient is afraid of the tub, try the shower.

Remember to provide privacy.

(We are not here yet. WB baths and showers himself, shaves and keeps his teeth and bridge sparkling. Nearly an obsession, he is quite tidy, neat and smells great all the time)

TIP FIVE:  Feeding The Patient

Make sure the patient is in an upright, comfortable position and ready to eat.

For patients who are poor eaters, observe the patient.

Consider the past eating habits when you can.

Give the patient preferred foods when possible.

Observe the patient to see if she has difficulty swallowing. Advanced patients forget how to swallow.

If the patient appears to think the food may be poisoned, medicine may help.

(WB has a yearning for sweets. If not watched, this is all he will eat. I believe now his brain is triggering that desire. He's always had a sweet tooth and has tested borderline diabetic. I refuse to take away the things he enjoys the most. I let him choose his breakfast, I prepare lunch and dinner and then a light desert. He will sneak around to get his sweets! Some days, lunch is light, dinner heavier. Other days he has a heavier lunch and a lighter dinner. It really depends on what's on hand  timing and our new "receiving guests" program. Sometimes dinner or lunch is delivered!)

TIP SIX:  Dealing With The Wandering Patient

Allow the wanderer as much freedom as possible.

A large line or strip of take or belcro on the door/floor may stop patients from goin past that point.

Remember! The patient may be looking for something or someone.

Take the wanderer to the toilet at least every two hours. 

No medication will stop the patient from wandering.

Try and redirect the wandering patient by giving them something to do.

A large stop sign on the exit door may help. Needing the bathroom is a major cause of wandering. 

(This is a real concern for us. WB isn't wandering, he does get turned around in the house but can generally correct rather quickly. He just sort of pivots until he decides. In the grocery store or department store, you cannot let him out of your sight. I am a fast walker and have to remind myself when he's pushing the buggy behind me to slow down. If I round the corner to the left for another isle I may find that he rounded it to the right)

TIP SEVEN:  Dealing With The Hostile Patient

REMEMBER!  There is a reason for every behavior. Try to determine the cause. Ask yourself the following questions"

Is this a new behavior?

Is the patient medically ill?

Does the patient have anything new in his environment such as a new caregiver, new housekeeper, new room or roommate, or change in routine?

Is the patient on a new medication?

(This is a major sticking point for us. Any changes in environment create additional anxiety for WB.  Also, I encourage all who call him on the phone to NOT tell him about an old friend's passing, NOT to talk about bankers, NOT to discuss the failing health of his mother. Light and airy is the mantra. Perhaps because he's always been short-tempered and had a low resistance to BS? Perhaps this is just normal for AD patients. Not sure, but when too many things are hitting the fan at one time, he's a flight risk. We've had one hostile encounter, it was scary. Remember, that's what landed him in the hospital last month)

TIP EIGHT:  Dealing With The Rummaging Patient

Direct the patient away from getting into others' things by re-directing. Give the patient something else to do such as offering dolls, stuffed animals to hold, magazines or books with pictures to look through, simple puzzles to put together, paper cups to stack, towels or laundry to fold, or put pennies in a jar.

(Yes, he does this. He will rummage through the mail and has no idea what any of it is, what it means, not a clue. Most of our mail is still addressed to him so that creates greater paranoia for him. Even though he cannot grasp what the content are, he still asks...over and over again. So, we scan the mailbox before he goes as it is part of his daily routine)

TIP NINE: (I DON'T KNOW! THEY LEFT THIS PAGE OUT!) 

I will get this from them and edit this post as soon as possible.

TIP TEN:  Remember!

Demented patients have brains that are dying. Most of the time, they cannot help behaving the way they do!

Keywords: Early Onset Alzheimer's Dementia, Billy Ray Brantley, Caregiver
My name is Rhonda Brantley. My husband Billy Ray Brantley has Early Onset Alzheimer's Dementia.

189 Unique Hits in 10 Days......

 

Absolutely incredible.

I have been blogging on and off for the last several years and only recently became serious about it. Back in 2007 when WB was officially diagnosed, Dr. Lee suggested that I write for therapy. Then, appointment after appointment, I would visit the doctors with lists of questions and ideas from the searches I made online and elsewhere. In true Rhonda Brantley fashion, I studied this to a fault, needing to know why, how and when. With AD and specifically Early Onset, there just wasn't enough unique information to satisfy me.

One of my chief complaints to Dr. Lee on a particular visit was the depression and helplessness I felt when trying to explain to our vast group of friends and family the condition, symptoms, etc. and the mechanics of sharing it over and over and over again. "Write", he said. "Do it for you, do it for WB, do it for others."

You can look at my trusty visor, all crumpled up and distorted, to see that I hit a brick wall several weeks ago. Not ungrateful, but overwhelmed at the sheer number of calls from well-wishers with suggestions and ideas on what I should do. This is what I could do for WB, this is how I should handle it for myself, that is how we must do it for Kate, the kids, etc.  Overwhelming concern turned into a very large suggestion box. Since so few really know and understand the true fall-out for the affected and not knowing from me specifically and regularly what was going on had opened up the door for hundreds of drugstore antidotes.

Again, grateful and humbled for the support and concern, but the scope and breadth made it hard for me to get my arms around. I walked around for days just manhandling WB and the new medications like a ship wandering aimlessly in the night. Solace came late at night after finally getting him down and I began to type. 

SHUT UP! It was a cathartic moment. Rising from the computer, I left those bottled up emotions for my trusty Mac Desktop to process and I walked away.

Unfortunately, I am not a product of higher education and my writing skills are rough at best. But when I quit the search for proper sentence structure and word usage, I found my voice. Then, after searching for other blogs on the suffrage of ordinary people and their day-to-day struggles living with Alzheimer's Dementia for some kind of checks and balances, I came up empty. Stumbling upon this niche was purely accidental and now I feel a responsibility to myself and others to keep this blog active and updated.

Yes, we can find article upon article about the stages of AD; the symptoms, the signs, the treatment. Ultimately, I and others in this situation just need to know if these unique experiences are really unique, common, textbook, etc. Remember, each and every AD patient is different. Sometimes I could just appreciate someone telling me, "Hey you, this is how its going to happen". 

Some may say getting into a support group is the answer. HUMMMMM, not so much....yet (for me). Perhaps soon, perhaps when the psyche comes, perhaps when things slow down a bit. I needed instant relief and found it on the keyboard. 

I found people (or people found me) who are in the same place. I wake early with dread, but am now able to release several levels of personal anxiety while sharing with others. A mix of our life, our struggles, specific articles found on the subject matter, pictures, music, joyful moments  ~ 

After I started WB's blog about Alzheimer's, I quit writing on my personal blog and directed all traffic here. When my own life pursuits were put on indefinite hold, so did that portal.  Someday soon, I hope to export those articles here in archives. But for now, its AD and after AD.

As an active advocate for many causes, this specific shoe fits very well today. I must find those who are tired and exhausted, overwhelmed and anxious, fearful and apprehensive, angry and resentful. Help me find others going through the caregiver experience or who suspect the genetics of dementia. From just a few random comments and emails there is no doubt a need for confirmation on the trials and tribulations of daily living and coping mechanisms.

Even though chosen topics are peppered with personal flair, readers have already provided great subject matter for me to ponder. Taking lessons from others on Search Engine Optimization,  Social Media, Blogging, HTML manipulation, etc. justifies my excitement. Unique hits are just that. People came to visit at least once. I push through facebook and have over 700 friends, but that alone cannot justify the recent number of hits on the gory details of Alzheimer's Dementia. 

Somebody is spreading this word. Thanks friends. Please keep sharing.

~ RB