I had no idea...

Being a caregiver is hard. Being a caregiver of an intellectually disabled adult is even harder still. But being a caregiver of someone who cannot be civil or have any concept of showing appreciation is exasperating. Even though I accepted this appointment as guardian knowing he had limitations, challenges, and behavior problems, I really had no idea how taxing this would be emotionally and spiritually. Over 20 years ago, when our father asked me if I would take care of David when he was no longer able to, I agreed wholeheartedly to be his guardian and caregiver, and asked Dad what I needed to know to take care of my brother.  His answer? "Barb, you have no idea." That was it. I thought, "Well that is a strange answer! That's it? 'You have no idea'? Really?"

Fast forward to the present, I still have no idea what to tell people who ask that same question, so I too say, "You have no idea." Period. Nothing else. Just that.  I have tried to define the person that is my brother, to describe his personality and quirks and issues and care needs. But all people really see is whatever persona David presents upon that first meeting. I had no idea how exhausting and overwhelming this journey would be. To provide total care to a 73-year-old child trapped in a man's body. Who upon meeting anyone new, says, "Hi, I'm David." What does that mean? Who is David?

David is the oldest of five siblings, my sweet brother, and I love him dearly, with all his issues and idiosyncrasies. He was born with his disability, and our mother, who was mentally imbalanced and cruel, abused us all, but most of all, David. When she and our dad divorced, she was awarded custody of us, but after a year she put 13-year-old David, a pillow, and a suitcase out on the porch, locked the front door, and called my dad to come get hi "$%*! son!" as I watched from the living room.  My dad and stepmom took care of him for the next 53 years, putting David's needs above their own, even moving three times to ensure he had the best special needs programs. When Dad's 94-year-old body began to fail on New Year's Day, 2018, David moved in with us; since that time I have been his caregiver, guardian, trustee, and surrogate parent.

By the end of 2018, I knew exactly what my dad meant. Or thought I did.

I had no idea... how sweet David could be. He always remembers birthdays, anniversaries and holidays, and hugs everyone (and anyone) he meets. He loves music, old TV shows, food, bowling, and looking at photo albums. He saves everything anyone gives him, whether a picture, card, memento, or ratty t-shirt; I know because I have had to purge his closet and dresser numerous times. He has photos in his wallet folded so many times the images are barely recognizable. 

I had no idea...about the depth and breadth of his love for music. He owns over 200 record albums (yes, vinyl record albums), both 33s and 45s, and well over 200 music CDs; his most prized possession? His record player. The music genres span not only decades but centuries: classical, jazz, big band sounds, Motown, disco, movie soundtracks, patriotic tunes, crooners, ballads, R&B, soft rock, and some country. Herb Alpert and the Tijuana Brass, Elton John,  George Gershwin,  Louis Armstrong, the Carpenters, Beach Boys, John Denver, KC and the Sunshine Band, Frank Sinatra, Smoky Robinson, Dean Martin, Michael Jackson, and ABBA are in his repertoire, and he loves to sing along with each, as loudly as possible. Mention karaoke or a concert and he is all in!

I had no idea...how many memories he is capable of recalling in perfect detail: the name of his elementary school, his bowling scores,  Special Olympics achievements, who gave him what for Christmas, and special moments with Dad. One day he recounted a trip to hear the Cincinnati Pops Orchestra in the late 1970s, recalling details about the conductor (Erich Kunzel), the music played (Rhapsody in Blue and some Duke Ellington jazz), and the surprise appearance of Arthur Fiedler of the Boston Pops at that concert. Intrigued, I looked up all the names, and was shocked at the accuracy of his memory recall. 

I had no idea...about the challenges he faces on a daily basis, both physical and mental, and how frustrated he gets because he cannot understand why he has these difficulties. As he has aged, he is experiencing what all of us will experience one day--problems with hearing, vision, and coordination, all of which create a lot of angst. Hell, I don't even understand it because, like David, I too feel my body has betrayed me somehow. Routine and structure are his best friends; any change, no matter how slight, throws him for a loop. He once spent over an hour trying to get his alarm clock to reflect the exact same time as his wristwatch (it was two minutes fast), cutting his hand in the process, ignoring the blood dripping on the dresser and floor, until I took the damn thing away from him, so you can imagine how crazy he can get because his body won't cooperate with normal functions.

I had no idea...how much I would learn from this "intellectually developmentally delayed" brother of mine, the joy and laughter he would bring to our lives, yes, amidst tears and frustration. The three of us--Alex, David, and I--enjoyed life together, a life of moments ordinary but made special because we shared them. I learned more about myself and my faults through my relationship with my brother than I learned from any other person; some of the things I saw in myself were not so pretty...but to David, I was always his "amazing, beautiful, best sister ever." Seeing him with new eyes--actually the eyes of my much younger self, when he was simply my big brother--I realized how special David is, that he too was created in God's image.

I had no idea...how much I will miss him when he is gone. 

IDD and caregivers

While the majority of FaceBook posts lately seem to focus on political rants and memes and a general sense of "that's not fair", let me just take a little time to talk about what over one million households in the US deal with every single day, 24 hours a day. That is the number of households with an adult with IDD, and caregivers are normally aging parents or siblings.

(Quick definition: IDD stands for Intellectual and Developmental Disability; an intellectual disability is when limitations in mental abilities affect intelligence, learning and everyday life skills. The effects of this can vary widely. Some people may experience minor effects but still live independent lives. Others may have severe effects and need lifelong assistance and support.)

Our house is one of the households--when our parents died in 2018/2019, I became my IDD brother's guardian. Since January 2018, I have banged my head against a wall (several walls actually) trying to get support, help, assistance, respite, education...you name it. And despite all the pretty websites, links, brochures, and the multitude of agencies funded and commmissioned to do just that, I am, more often than not, on my own. There is no one-stop shop, no single point of contact, no real expert in obtaining even the simplest of services for my brother. Something as seemingly simple and basic as Depends required a multitude of forms, assessments, and phone calls for weeks--I gave up and just get them from Amazon's Subscribe and Save. The really important needs like housing, healthcare, respite for exhausted caregivers are so hard to obtain and have so many roadblocks that most of us just give up and lean on other equally overburdened caregivers.

The lives of me, my husband, and my brother were turned upside down and inside out seven years ago. At the age of 66, my brother had to leave everything familiar and move in with us. Suddenly we had to rearrange our schedules to ensure someone is with him all the time. We managed (barely) until COVID shut everything down and made everyone withdraw into their own little cocoons. It became too much for us, and with nowhere else to turn we tried assisted living facilities; I won't even tell you what a nightmare that was. By divine providence we were pointed towards a wonderful program in Henderson County and blessed with a family who took David in as part of theirs in 2021 for nearly four years.

But like everyone else, my brother got older, and with age came the familiar age-related issues: UTIs; skin tears; nutritional challenges; poor vision, hearing, balance, and flexibility; weakened immune system; and cognitive decline, and we knew it was time to move him back in with us, albeit temporarily. Two months ago I began (again) the search for options for my brother to have the quality of life he deserves, and for us to be able to have our own life and fulfill our God-designed purposes. Those same brick walls and seas of red tape are still there, but I will not give up, no matter how hopeless it may seem. I cry, I scream, and I stay awake most nights, praying for a solution, and the wisdom and discernment to see and implement it. Maybe that will happen soon. Perhaps it won't.

No I am not complaining or whining--I am raising my voice to advocate for families caring for IDD adults everywhere. We are fortunate. David is highly functional. He is verbal (sometimes too much so). He can dress himself (sort of), take care of his hygiene (to a point), and feed himself (even if he is messy). He is grumpy and funny and irritating and lovable. And most importantly, he is a child of God, fearfiully and wonderfully made. He deserves more. And I aim to get it for him.

Please, if you know a family struggling with caring for an IDD adult (even if it looks like they are not struggling, they are), gift them with 30 minutes or an hour of respite. Send them some Bojangles chicken for dinner. Pray for them. Listen to them talk about their day. Hug them. Fold their laundry. Anything that shows you care.

Here is a photo of David and me in Middletown, Ohio, in 1956/7.

Frustrated

Me and David, 1959

Being the guardian of my brother is hands down the most frustrating, exasperating job I have ever had; although I know more now than I knew three years ago when he moved in with us, I feel completely inadequate to handle life as we now know it. I cannot even really explain what our life is like 24/7, because no one would believe it. I thought I had seen it all, that the trials and surprises and difficulties were over, that we (Alex and I) could finally get on with our retirement, and enjoy our lives and each other. If you follow this blog, you know the story; if you don't know, well, here's the Readers' Digest Version: Crazy mother, depression, estranged siblings, false charges, lawsuit, caregiving of and then deaths of all parents, culminating in caregiving of mentally handicapped older brother. In four years. And we figured we could handle the last one. We cannot. It is a Herculean effort that has me on my knees and in my Bible on good days, and in tears and not sleeping the rest of the days. I have felt my psyche and my soul slipping away as I try in vain to tackle this insurmountable task of caring for my brother in our home, while still trying to retain some sense of normalcy as a wife, a mom, a nana, and a sister. Instead, all those other roles are subjugated to the role of caregiver. A caregiver who does not have any hope of conforming her brother to her ideas of how to act in her home, or to understand the rules of proper adult social behavior. I was not trained for this, my husband was not trained for this, and we are at an impasse. Each day is a new horror, a new realization that no matter what we say or do or demonstrate, it is all lost on my brother. It is as if we are speaking a foreign language to someone who cannot hear, or trying to adapt a wild thing from another culture to live in our home and comply with social mores that he will never comprehend.  Like some crazy, mutated version of Jungle Book.

And it is not merely the diminished mental capacity or behavioral issues we must face--he is also scarred (and still scared!) by the abuse he suffered at the hands of his (and my) biological mother. I, at least, can work it out through prayer and counseling and reason, but he is imprisoned in a world of torture and abuse that to him, never ended. So the behaviors, the coping mechanisms he learned as a toddler--lying, hiding things, obsessive compulsiveness, inability to cry, anxiety, cussing and yelling at inanimate objects, insomnia--these behaviors continue, and grow more embedded in his personality year after year, until they are habitual and automatic. And unchangeable. We see it in full display when we ask simple questions and he shifts his eyes and makes up a story, and will stick with that story regardless of reality staring him in the face. We have tried, God we have TRIED, to help him see we are not my mother, we are not going to punish him; we have tried millions of times to teach him the value of truth, and the safety there is in knowing and sharing truth. And, most of all, we have  spent countless, exhausting, emotional hours upon hours impressing upon him how much we love him and care for him and have his best interest at heart. All to no avail. I am so lost, so defeated, so darn, yes, frustrated in my inability to reach him. My failure to prove I love him, to have him see and feel and experience our love. And yes, of course, the selfish human desire (no, need) to be appreciated for what we are doing, that is always there, lurking in the background, demanding attention for our efforts. Mostly, though, I am frustrated in the loneliness I feel, the sheer overwhelming frustration in not being able to explain why I feel this way to outsiders, and I am angry  at my dead parents for not having prepared us better for this task. We are not psychologists or social workers or therapists or mental health professionals; we have no degrees or training or even an online course in special education and special needs challenges. We are merely a married couple with grown kids and a desire to help and to love and to take care of our family. It is not enough. Yes, through Christ I can do all things, but the method I use to accomplish those things may not be the method I thought we would use. 

And you know what makes it so infuriatingly harder? Two things--folks telling us what great people we are for caring for our brother despite his challenges, and folks who only have to interface with David for short periods of time telling us what a joy he is, how blessed we are to take care of him, and how lucky he is to have us as his family. Yeah, both those viewpoints only serve to make us feel even more trapped and more inadequate than before, and when we try to explain, to provide anecdotes and vignettes of what our days are like now, we get one of two looks: the "deer in the headlight" or the "shocked yet benevolent" look. Alex and I could relate a zillion examples and reasons why our situation is so untenable, yet when we tell folks the stories, they either sound inane and silly (even funny), or so outlandish as to not even closely resemble the truth. So how do we communicate the exhaustion, the stress, the utter monotony of living with an adult who ignores common rules and social values, has no personal space, or sense of right or wrong? An adult who cannot really clean himself or take care of brushing his teeth or wipe his butt or remember to wash his hands? A 68-year old man who talks to himself and feeds himself and dresses himself but who becomes catatonic when asked a simple question or has to go through the TSA checkpoint at an airport? A man who merely says what he thinks you want to hear because he just repeats phrases and responses he has learned from his parents for the past 50 plus years? An adult living with us in our home who truly lives in his own world where his rules and his beliefs are paramount, who moves things around or throws things out or sneaks down in the middle of the night to binge on whatever food he can find? An adult who will perseverate on a hangnail or an imaginary injury for days, but who cannot or will not or just plain doesn't understand the need to let us know he has been peeing blood for two weeks and probably has a severe infection? The daily litanies we repeat are obeyed (sort of)--brush your teeth, wash your hands, here are your pills, chew your food, tell us what is hurting--but they will never be learned. Then there are the safety issues--picking up snakes (thank God it was not venomous), eating food from the trash, walking across the street without looking, carrying too many things down steps, picking up broken glass, walking backwards up stone steps. We are always on our toes, trying to prevent the next emergency. Most of all--David is 24/7, no breaks, no quick trips to the store without him, no date nights, no 30 minute walks while I leave him at home. Every minute, every day, 365 days a year. 

Yes, we love him. Yes, we will take care of him always. Yes, we know he is made in the image of God and that God has a purpose for him as well. He is my brother. We promised we would care for him. We know God has a plan for us. We just want to know where it all fits together. So, we asked. We prayed. We waited. And asked and prayed some more. For God to close doors and open others. Friends prayed. Family prayed. 

God answered prayers, as He always does. In His time. And I am trying my hardest to trust His answer, and to not become frustrated.

ILL EQUIPPED

If I have learned anything over the past five years, it is that I may like the IDEA of being a caregiver, but I am not equipped for it. And it drives me crazy, because I am accustomed to being given a task or assigned a role, adapting to it, and then excelling in record time. School, military, new jobs, knitting and crocheting, learning languages--piece of cake. Raised two beautiful, independent, conscientious women, and was a foster mom to several teenage girls. Handled all that life could throw at me, and thought I was pretty well equipped to handle anything else. Until now.

Going into year three as a caregiver for my mentally handicapped brother, I am painfully aware how ill-equipped. I'm a full-time caregiver, housekeeper, guardian, nurse, accountant, counselor, therapist, cheerleader, disciplinarian, and social services caseworker. And now with truly essential services (like school, doctors, respite care) shut down, it is a 24/7 responsibility that I share with my husband (who at times seems to be better equipped for this duty than me). We have taken on something we thought we understood, but we really had no earthly idea how complex this would be. No, we assumed it would be like raising our kids, like taking care of a small child. Or perhaps similar to  supervising an adult who was maybe a little confused. It is NOT anything like either of those scenarios. Not one bit. 

First of all, we were 40 years younger when we were parents, and though it was a learning process, we muddled through at first, gradually getting more adept at parenting, and finally, hopefully, we graduated to being parents of grown children. That was the goal, the objective, the target, the entire time our children were with us, through all the stages. We knew it was going to end, and that we would be successful. Not the case with someone who is intellectually and/or developmentally delayed. Growth and learning and moving on to the next stage just don't happen in this world. Sure, we have and see small incremental changes, but every day is the same. Every. Single. Day. 

Second, caring for elderly parents, while difficult emotionally as well as physically at times, presents different challenges. Challenges that are well-documented and expected and planned for, with lots of support out there. Everyone has parents, and everyone has people in their lives who grow old, more feeble, and need assistance. Eldercare is not anything new anymore. There are countless options and alternatives available to family members caring for aging relatives, and more importantly, a HUGE support network, whether through formal channels like healthcare and social services or church, or via informal venues such as friends and social media. Caring for a relative with "special needs" has very little of that support network. Information and resources are few and far between, and navigating whatever system exists to help families cope with challenges requires the sleuth capabilities of a seasoned private investigator. Terminology is ambiguous, and so frustratingly stigmatized. Despite all our advances with technology, travel, healthcare, mental health support, and social programs, our world continues to trivialize, mis-label, marginalize and be embarrassed by this population of individuals who, through no fault or doing of their own, were born into a world they will never understand. Along with their family members. 

Sure, some communities have programs that help, and there is an army of dedicated, selfless direct support staff who deal with folks like my brother every day, and truly excel at it, and love what they do. Believe me, I am in constant awe of these folks. They are heroes and angels and have amazing super powers. But they need funding. State-run benefits do exist but they don't come anywhere NEAR to meeting the actual need, and there is no federal program at all, not that I have found or seen. My parents took care of my brother for 65 years, moving from state to state to chase funded, barely adequate state programs. Affordable respite care, group homes, and in-home care are practically nonexistent, difficult to find, and clients are on lists for decades before a spot opens up, and to qualify, you have to prove eligibility. In our case, I had to find something that "proved" my brother's "condition" existed before his 21st birthday. Really? My parents were dead, and I had to find something that proved he wasn't faking or I wasn't lying. Like I would really make this up to get on a list for care he wouldn't receive in at least 10 years. (I did find a single page of a school psychiatrist report from 1962--luckily, they accepted that). The only other option is private pay, but again, there are not enough suitable facilities where he can reside with folks like him, so many families resort to placing their relatives in assisted living facilities or nursing homes. If they have money, they pay for a nice one. If they don't, they hope for the best and apply for Medicaid assistance.

I've lived long enough to watch our world go from institutionalizing people like my brother in state facilities, to trying to educate them separately, to attempting to normalize them into society. None of these have worked--they were merely smoke and mirrors to try to hide him away, and at the same time, not admit that something has to be done to help families, and these individuals, deal with the very unique challenges and issues that face them every single minute of every single day.  So again, I repeat, I am ill-equipped to deal with the cards we've been dealt.

But I will do the best I can, soldier on, and just get used to the fact this is something I will never excel at, never adapt to and never understand. Except with God's grace, that is.

As a nation, no, as a world, we have got to do better. We are all God's children, we are ALL created in His image, and we ALL deserve the same chance to achieve our purpose in life.

Now may the God of peace who brought again from the dead our Lord Jesus, the great shepherd of the sheep, by the blood of the eternal covenant, equip you with everything good that you may do his will, working in us[a] that which is pleasing in his sight, through Jesus Christ, to whom be glory forever and ever. Amen. (Hebrews 13:20-21)

Operation Burnout

This has definitely been a rough week--emotionally, spiritually, mentally.  I have cried more this week, for apparently little to no reason, more than I have in the past year, and a lot of the tears have been angry, selfish tears. Tears shed in self-pity, in the "why me?" mindset.  I am so overwhelmed with the duties and responsibilities and the realities of being caregiver, guardian, trustee, representative payee, and sister of a mentally disabled adult sibling.  And, at the same time, I feel guilty for feeling overwhelmed, for feeling resentful.  And I just sit and cry, and get angry at the dumbest things, and cry some more, and feel sad.  My sleep is sporadic and not restful, I have given up exercising, and nothing I read or listen to gives me comfort, or answers to my questions.  And yeah, I read my Bible, I pray, I listen to music, try to take time for myself, count my blessings, all that stuff.  But, at the end of the day, I am still lost, overwhelmed.  I am in a black hole, with no end in sight. And I feel like I have lost who I used to be.  

Since over two years ago, right before my parents died, my life has been completely devoted to the care of my brother.  We oversee his hygiene, his choice of clothing, and how much he eats.  We shop for him, cook for him, clean up after him, and drive him everywhere.  I conducted hours of exhaustive research to locate resources for his special needs, to get him qualified for benefits in his new home state, find him a doctor, and ensure his Social Security benefits are channeled into the correct account. We supervise daily meds, and  repeat incessantly the mantras of wash your hands, brush your teeth, wipe your face, clean your razor, take a shower, chew your food, look out where you are walking, wash your hands, buckle your seat belt, look out for the car door so many times I feel like I say nothing else. When he is acting out, or throwing things around upstairs, cussing out some inanimate object, I stop and (try to) calmly intervene and figure out how to distract him and refocus him on something less frustrating.  I have to literally be a mind reader and a behavioral psychologist to ascertain if he is sick, because he is incapable of either discerning if he is sick or communicating true discomfort.  Conversely, we have had to learn that when he complains about being cold, tired, sad, or has a stomachache, that really he is upset about some microcosmic, miniscule change in his routine.  We have had to clean up overflowing toilets (and the messes he made when he tried to "help"), plastic spatulas burnt to the dishwasher coils, projectile vomit that happens without any warning (in a moving vehicle), and countless other disgusting and unsanitary incidents.  My husband cleans his ears three times a week to prevent earwax impaction--because, if he doesn't, the alternative is a one hour appointment with the doctor to flush out more wax than I thought was possible to form in a human ear in the space of six months.  Monthly pedicures and manicures are paramount, as is prophylaxis for fungal infections.  And those are merely the physical needs; behavioral, social, and spiritual needs are far more comprehensive.

Don't misunderstand...I love my brother; we volunteered to take on this thankless job, knowing it would be hard, knowing that resources are scarce, fully aware it would be a very steep learning curve.  Steep learning curve for me, that is...my brother will never learn more, or progress to the next stage in life...and that, my friend, is the rub.  Day in, day out, nothing really changes, nothing ever will.  Psychological evaluations from the past 60 years are eerily similar, talking about the same challenges, pointing out identical behaviors and challenges, regardless of whether he was 10 or 25 or 55.  Folks who don't deal with developmentally delayed adults tell me, "oh, it's like a perpetual toddler, or like my 8 year old." No. It is not. First, he is not my son...he is my brother.  Second, it is not that simple. In some ways, he is highly functioning and capable, like a 10 year old, but in others, he is almost infantile.  And in still other areas, there is no explanation. He is, was, and always will be, forever a kind of child.  A man-child. A very special person. Who will never grow up. Or be on his own. He will never drive, or get married, or have a regular job.  But when I look at him, I still sometimes see an adult.  He can do some basic things...with supervision. He can read, he loves music, and he is an awesome bowler.   But the fact that he is physically an adult lures me at times into the trap of false expectations, and, when he does not meet these expectations, as he will always, inevitably, not meet them, I am temporarily stunned, shocked, disappointed, and irritated.  Immediately followed by an overwhelming sense of remorse and guilt.  And I get angry and cry and then cry because I am crying and get angry because I am crying. And when folks who interact with him occasionally say how sweet he is, how fun he is, what a joy he is, I wonder if perhaps I am wrong. 

Yes, there are people who have it harder, who have challenges that make ours look like a cake walk.  But I am not in their shoes.  I am in mine.  And I have been completely and utterly human this week, and have succumbed to my human weaknesses.  This week, it has, for me at least, been too hard, too beyond my capability to manage, to understand, to fix, to deal with.  I am too tired to even apologize for feeling sorry for myself.  Judge me if you will.  Rant over.  

Did I do enough?

Rosalyn Carter once said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."  Seems I have been a caregiver for quite a long season, most recently for my stepmom.  Losing her has been, and continues to be, extremely difficult and painful and raw.

Two moments I cannot seem to erase from my memory:  Sheila sobbing and exclaiming "I don't want to die!" in her hospital room June 12th, and the very vivid way she died in hospice three days later.  

She'd been sick for 15 months before she finally went to the doctor, and I don't mean "sick" in the sense of "not feeling well."  She had lost over 30 pounds in less than 5 months, could not control her bladder function, was in severe pain, and routinely had large amounts of blood in her urine--and I mean LARGE amounts.  By the time I convinced her to go to the doctor, the outlook was grim--three to six months, he said, if she did nothing.  I saw his eyes...he really meant to say, "three to six months, regardless of what you do."  We still made the effort though; she went to a specialist in Nashville, got pep talks from various medical staff, survived some scary hospital stays, and finally agreed to move in with us and go to the hospital in Asheville.  I knew the cancer had spread, and so did she, if truth be told, but we were betting on a few more years, hell, even one more year, with a halfway decent quality of life, even if it meant chemo and radiation and surgeries.  She would be with us, her family. So, the day after my birthday, on June 3, Alex drove to Knoxville and brought her here.  Her level of pain was so severe she could barely walk, so we gave her our room.  After two days, we went to the ER, and from there, she was admitted to the hospital.  Tests, tests, and more tests--the staff was incredulous as to how she had been managing on Tylenol alone--and we discovered the cancer had spread--to her pelvic cavity, to her spleen, and to her lungs.  Surgical removal was no longer an option.  Even more challenging, her right kidney had not been working for over 6 months because of the tumor encroaching on it, but the urologist and oncologist were hopeful they could get it going again, at least enough for her to survive some very toxic chemotherapy.  Six hours after that procedure, our hopes were crushed...again.  Her kidney function was not improving, so the only option left was for her to endure five grueling weeks of targeted radiation--and then the radiation oncologist added, "palliative care radiation" to the treatment plan, stressing that it was in no way to be perceived as curative.  None of the treatments were.  

That was a dark night, and one of the night shift nurses sat with me in the family waiting room, holding my hand, offering me coffee, and watching me struggle with my thoughts, with the reality of it all, with the decision I would have to help Sheila make in a few short hours.  That morning, at 7 am, I crawled into bed with this woman who was more of a mom to me than my biological mom, and told her we needed to talk.  I explained what the doctors and said, reviewing and summarizing the whirlwind events of the past 7 days.  I held her hand, and tried not to cry, and told her what the options were--6 weeks of hell she may not even survive, or palliative hospice for whatever remaining hours she had left.  She cried harder than I have ever seen her cry before, and my heart just broke into a zillion pieces, and then, when the orderly came in with a gurney to take her to her treatment, she abruptly said, "Get out.  No more damn treatments."  Then she turned to me, and told me to start dialing the numbers of every member of our immediate family, and she would tell each one, in turn, how sorry she was...that the news was not good.  Family came and family went, and I was just going through the day like a robot, no emotion, no feelings, just completely shell-shocked.  She moved to hospice on Friday, more family came to visit her there, and by Monday evening, she was "actively dying," as the staff told me.  Don't misunderstand: the staff was wonderful, personable, empathetic, compassionate, and just stellar.  They explained what we would see, what she would experience, each step along the way, and never kept us waiting longer than 30 seconds when we pressed her call button.  I have watched people die before, in all manner of sorts, but I have never actively participated in the death of someone I love.  

Her last few hours with us, she was pretty much out of it--not just from the morphine; her body was truly shutting down.  She held my daughter's hand about 9 pm, told her she loved her, and that was the last thing she said.  The next 90 minutes we watched hopelessly as her body pretty much just sank and shriveled up; her breathing became more irregular, her skin grew mottled, her cheeks became sunken in, and she had this horrible rattle in her throat.  The nurse explained it was her lungs giving out and gave her something to loosen the secretions--secretions that were filling her throat and her mouth, and I grabbed an oral swab and kept clearing her mouth, talking to her, telling her to go, to be with dad, to go to Jesus.  I was only dimly aware of anyone else being in the room, but could hear my sister Nancy talking and my daughter Becky crying.  Then, suddenly, it was over, and she was gone.  Dead.  No longer there.

Since that day, not an hour goes by that I do not relive those last 12 days, that morning on her hospital bed, and the final hour of her life, and I second-guess everything, every single act, every decision, every delay, every "oh well, she will be okay" and every moment I spent with her (and also the ones I was not with her).  I beat myself up for not forcing her to take care of herself last year, for not being a better, more demanding patient advocate, for not grabbing her by the arm and making her go to the oncologist as soon as we got that dreadful diagnosis.  I want someone to explain it to me, to tell me why no one told us until the last few days that our hope was futile, why no one could be honest with us and just tell us to prepare for death.  I regret making her cry one day when I was tired and frustrated and I yelled at her for not going to the doctor sooner--before we knew how really bad it would get.  I want to shake the stuffing out of her friend for not making her go to the emergency room before she lost so much blood, for not calling me or any of my sisters and telling us how sick Sheila truly was.  I am mad at myself for letting my daughter witness her grandmother's last few moments on earth, because it is not at all like TV or the movies; she will have that horrible moment forever engraved on her mind, as well.  Mostly, I am angry and pissed at myself for not being able to save her, or at least to have brought her home to die here, instead of in a strange place (even though the hospice house was absolutely wonderful to us).  Did I do enough?  Could I have done more?  Why didn't I just move in with her after my dad died in December?  Or move her in with us?  

Did I do enough?   

Yes, my faith is intact, and yes, I am well aware (and grateful) that God controls all things, and works all things for our good for those who love Him.  I am at peace with that, and with her time, manner, and place of death.  I know this guilt, this constant merry-go-round of shouldas and couldas and wouldas will not change the outcome.  I do not have that kind of power, to change the future, to change God's plan.  So, intellectually, yes I know I did what I could, and I loved her, and the guilt that I feel is a normal part of loss, especially for a caregiver.  But the human part of me, the emotional side, the critical, nagging, "I will never be good enough" part of me just keeps asking the same question, over and over again.  

Did I do enough?  Did I do enough?  Did I do enough?

There's a song by Warren Zevon, "Keep me in your heart for a while," the song the hospice music therapist recorded Sheila's heartbeat over.   Perfect, simple, and beautiful song.  

Shadows are falling and I'm running out of breath

Keep me in your heart for a while

If I leave you it doesn't mean I love you any less

Keep me in your heart for a while

When you get up in the morning and you see that crazy sun

Keep me in your heart for a while

There's a train leaving nightly called, "When all is said and done"

Keep me in your heart for a while

Sometimes when you're doing simple things around the house

Maybe you'll think of me and smile

You know I'm tied to you like the buttons on your blouse

Keep me in your heart for a while

Hold me in your thoughts, take me to your dreams

Touch me as I fall into view

And when the winter comes, keep the fires lit

And I will be right next you

Engine drivers headed north to Pleasant Street

Keep me in your heart for a while

These wheels keep turning but they're running out of steam

Keep me in your heart for a while

On being a caregiver...again

Sometimes I feel all alone, like there is no one in the world who truly understands me, or really comprehends what I am experiencing.  I mean, I know I am not alone, i know I have friends, and family, and of course, most importantly I have God, my faith, my beliefs and the knowledge that no matter what happens, no matter what I am going through, there are folks pulling for me, pushing me along, and at the end God’s waiting with open arms.  But still…like I said, I feel alone, confused, inadequate, especially when it comes to managing what life throws at me.  And I am not looking for pity, or sympathy, or even recognition—just awareness.  Everything in my life that I thought would be hard—exams, dating, finding a good husband, childbirth, cancer, family strife, deaths—it all seems so easy now, and I look back and wonder why I ever worried.  This?  I don’t know…maybe it gets easier.  Maybe I will get better at it.  Maybe I won’t.  

Ten years ago, my parents had a serious talk with me and Alex:  they wanted to know if, when they died, would we be willing to take care of my brother.  Ten years ago, we thought about it for a few days, talked it over with each other, and then willingly and eagerly said, “Of course!”. Heck, he was my older brother, after all, and I grew up knowing what all that entailed, right?  Every year or so, after a particularly exasperating week with David, my dad would ask “are you sure you still want to take care of him?,” we would ask what happened, they’d answer “you have no idea,” and we would roll our eyes and reaffirm our willingness to take over David’s care when it became necessary.  Ten years ago, we figured we would be prepared for that reality, and observed how my parents took care of him, how they spoke to him or about him, how they dressed him, entertained him, and fed him, and thought to ourselves, “we got this…hands down!”  Ten years ago we were still working, albeit retired from the military, and were enjoying our empty nest life—the girls were all married, there weren’t any grandkids yet, and the thought of our parents dying was a dim and distant occurrence.   Sure, we knew our parents were getting older, and sure, we knew it was inevitable that they would eventually die, but the reality of them dying and leaving us with that responsibility of caring for my brother was a long, long way off.  Ten years ago, I was confident I understood the intricacies of dealing with an adult who is handicapped, intellectually and developmentally delayed, with “special needs.”   I did not.  Neither of us did.  And we’re still learning.  After almost two years of being 100% responsible for him, we still do not understand the enormity of it all.  And for me that is the scariest part…not understanding.  Because I pride myself on how quickly I can become an expert on just about anything that I put my mind to, that if I can read about it, be exposed to it, talk to folks, and of course pray about it, I will conquer the problem.  

But now, more often than not, the sheer enormity and indefinite duration of this caregiving responsibility is simultaneously rewarding yet intimidating, comforting yet mind-boggling.  It is like nothing we have ever experienced, or imagined, or thought we would experience.  When our kids were growing up, we faced pretty much the same challenges as any parent, so we had this pool of common knowledge and similar experiences to tap into, and if that was insufficient, we had tons of books and other resources.  Potty training, learning to tie shoes, homework, dating, driving, leaving home—we would meet each hurdle and eventually clear it, then the next, and then the next.  Until our children became adolescents, and finally adults, and needed us less and less.  Then, our parents grew older, and less able to manage everything on their own, so we visited more frequently, called more often, explained the nuances of 21st century technology, and eventually, watched them become more and more dependent, and held their hands as they went to be with those who died before them.  Inevitable stages of life and growth and maturity and death.  And again, we were surrounded by friends and acquaintances traveling the same road, so again, we had access to a seemingly bottomless well of shared knowledge and experiences.  And if any of that failed to shore us up, the internet held an inexhaustible treasury of resources.  

Taking on full time care of an IDD adult, though, at an age when most of our friends are going on cruises and RV trips and taking on hobbies like pickle ball and tennis and hiking, is so hard to navigate, especially when no one we know is in that same predicament.  Sure, my friends may have a friend who has a kid with special needs, or they may have a cousin with Down’s syndrome, or perhaps one of their own kids is IDD, but we do not have ANY friends who have taken on the care of a sibling who will never be able to care for himself.   And trying to find programs, resources, benefits, caregiving tips, respite care, or just a support system is daunting, because there does not seem to be (at least not to us) any one agency or department or organization with all, or even most, of the answers.  Guardianship, social security representative payee, trusts, medical power of attorney, living wills, medication, healthcare coverage, psychological testing and treatment and coverage, public programs, financial assistance…the list is endless.   Online resources range  from frustrating and incomplete to nonexistent and conflicting, and there is not any overarching federal government agency, that I know of, that provides guidelines.  Most of the programs vary by state, and then, by the county within each state.  Availability and eligibility for state programs are hard to navigate, and in most cases, the waiting list for community-based services is 8-10 years.  We were lucky that our local vocational services had an opening for my brother for five days a week from 8-2, and most of my knowledge I have gleaned from random conversations with people in the system, but most of the time I only get a small piece of the puzzle, another phone number to call or website to visit , and still, I end up confused.  In the 50s, kids like my brother were “mentally retarded,” then in the 70s they were labeled as “mentally challenged” or simply, “handicapped.”  But political correctness marched on, and that was watered down to be “special needs,” and after discovering that was too vague, people like David are called “intellectually/developmentally delayed,” or IDD for short.  Whatever it is called, whatever the label, the availability of funding, training, and support services has not improved with the times—it has only become more complex, a huge labyrinth with lots of dark corners and dead ends, and more and more impersonal.  

We provide his shelter, his meals, his transportation, and companionship.  We make sure he doesn’t eat too much, that he takes his medicines right, that he washes his hands and brushes his teeth and shaves his face.  We help him pick out appropriate clothing for the weather, and make sure he doesn’t walk in front of a car, or stop him from picking up broken glass or making unsafe choices.  We show him every third day how to use a phone or shave his face or clean his razor or set a table.  This is so hard to comprehend, because no matter how hard we try, my brother will never change.  He will never learn things most people take for granted, or understand basic social nuances, or be able to be completely on his own.  We have to guess what he is thinking, or determine if he is in pain or sad or hungry.  It is exhausting.  Sure, it is rewarding. But it certainly is not easy.  I know, I know…nothing in life is easy.  But it seems to me that with our vast technologically advancements and innovations and global, instantaneous communication at our fingertips, we could offer families who provide the day-in, day-out care of IDD adults a more comprehensive support network.  Kudos, though, to the direct support personnel at TVS, the liaisons at Vaya Health, and our very understanding and compassionate community.  And to the families who deal with this reality every day, to the ever growing population of aging parents of IDD “children,” I am forever in awe of what you achieve. Every day, 365 days a year, without recognition or appreciation. Hats off to all of you!  

And to those folks out there who, like me, have a brother or sister or cousin who will always need someone to look after them, start researching your options now.  Because the more you know, well, the more you know.  

The Difficulty of Dependence

Two months ago, my "intellectually disabled" older brother moved in with us--permanently. "Intellectually disabled" is the new vernacular for mentally handicapped/special needs/mentally retarded--none of those terms really capture the challenge, though. And yes, it has been quite an adjustment for all of us, including him. Not just new routines and new schedules, or the obvious transition for David to move to a new home, in a different state, after 66 years of living with parents. No, it's an entirely different dynamic, for all three of us (or all 8 of us if you count the dogs and the cats). We have different sleep schedules, eating habits, likes and dislikes.  David has made the whole move quite easily, mostly because we love him and accept him for who he is, and we celebrate his differences.   Let's be real, though; having a mentally handicapped adult move in with us during our retirement years is not something you plan for, and it sure as heck ain't easy.  We are not always patient and understanding with each other, let alone with David. Sometimes we get stressed out, and there have been a couple moments of feeling a twinge of resentment for not having the "freedom" we had before the move. Mostly, though, having my brother move in with us has had the very unexpected effect of highlighting my faults, and the weaknesses of my faith. Especially in the area of putting my dependence in ALL things on God.  

The manner in which God orchestrated this change in our lives is, of course, mind-blowing.  For the past 10-15 years, it has been a given that David would move in with us, eventually.  That my parents would no longer be able to care for him at some point. That, obviously, my parents would not live forever.  I thought I would be prepared for the inevitable, because of the very nature of it being, well, inevitable. But, when it happened, it was so sudden, so surprising, neither of us even had time to think about it. The "sometime in the future" event arrived without any warning when my dad had to be rushed to the emergency room, and nearly died. David moved here, I stayed with my parents while my dad slowly convalesced, and finally, I was able to come back home. Miraculously, and I truly mean, MIRACULOUSLY, the county vocational services found short-term funding so David could attend adult day care at no cost to us. He was able to go to a big gala funded by the Tim Tebow Foundation, A Night To Shine, even though we hadn't had the presence of mind to register him.  The local bowling alley in our small town offered to have David "work" there one day a week, and they pay him by allowing him to bowl for free. He goes on field trips, is given free tickets to concerts in our area, and is just, well, generally happy.  

One night Alex and I were discussing something involving David, and David, as usual, kept interjecting so as to be part of our conversation.  He kept asking what we were talking about, would he be okay, what did it all mean, and how did it affect him. He was genuinely worried, and needed reassurance, so we did just that, telling him we have it, not to worry, that anything and everything he needs in life is taken care of.  He kept saying, "Really?  You mean it?," and then, just like that, he quit worrying about that specific issue.  (Of course, five minutes later he was worried about how he was going to dry his clothes with the dryer broken. We solved that too).  

How did we facilitate what should have been such a difficult change?  We simply told my brother not to worry. Here is a man who has been dependent on others for his entire life. He trusts those who are responsible for him, without reservation, implicitly.  He doesn't worry about whether there will be food in the refrigerator, or if the electric bill gets paid, or if someone can fix the dryer.  He is TOTALLY dependent on us for everything.  Every.  Single.  Thing.  That is when it hit me.  God wants the same thing out of me. Total, utter dependence. On Him. Not on my resources.  Not on my intelligence, or my insight. Because, at the end (and the beginning) of the day, I know no more about what or why or how things happen, than my brother does.  

God, give me the simple, trusting heart of a child. Or that of a man-child.  

I'm really not that much smarter, am I?  

Cultivating a Servant's Heart

This week I have been struggling with the reality of learning to have a servant's heart, of being a servant. I keep trying to skip the homework lesson, but the Lord does not want to let me slide on it.  Silly me, here I figured just because I volunteer 40 hours a week at a local non-profit store, I could get a free pass.  And wait, what about those Meals on Wheels I deliver one day a week? That should count as extra credit!  And, as if that isn't enough, here we are, in the final stages of organizing a fundraiser for childhood cancer research--quite a successful fundraiser, if I must say so myself! While I am taking care of my mentally handicapped elderly brother.  And trying to muddle through a messy legal battle. What more could I be doing? Heck, I am awesome!  

Gulp...That was a big chunk of humble pie I just choked on.

Serving with a servant's heart doesn't meant serving for the purpose of being noticed, or for the purpose of self-love, or praises of others.  A servant's heart serves others by seeking to meet the real needs of another.  Without seeking praise. Or recognition. Or appreciation. Or even a thank you. The humility of it all smacked me in the forehead yesterday morning, when I stayed in bed an extra ten minutes.  My husband had made my brother a quick breakfast of cereal and juice, but had to leave for an appointment before he could make coffee. He rushed off, I threw on a robe, and came out in the living room, said good morning to my brother, and started to head to the kitchen for a drink of water. Before I went five steps, my brother bluntly asked if I was ever going to make him some coffee. I stopped.  I bit my tongue. And that is when it hit me. What if that had been my four-year old granddaughter asking me, "Nana, when are you going to get me some juice?"

Being a servant, having a servant's heart, is looking at everyone, every person you serve, as if he is Christ.  Even when the person you serve is grouchy, or isn't a cute, sweet little baby.  Or won't ever stop needing you. Or will ever return the favor, or ever appreciate you. Yes, even if the person is that customer who has Aspergers' and is rude to you every single time she comes in the store, the one who glares at you or calls you names.  

Because having a servant's heart is NOT about being a servant just to someone else...it is about being in submission to God first, THEN being in submission to one another. Submitting to their real needs, willingly, and therefore subjugating my own needs, with zero desire for praise or payback. Every relationship I have, I must have a servant's heart. Sister, friend, daughter, mother, volunteer, wife, child of God.  A servant's heart.

Lord give me a servant's heart.

Encouraging words

If the past year taught me anything, it taught me what a caregiver needs most is to be believed and encouraged. Because most of the time you just feel so alone, plodding through your day of caregiving. Because caregiving is not glamorous--making meals, doing laundry, driving to appointments, cleaning--at times it is downright, mind-numbingly boring. Because no one but the caregiver knows how draining, straining, and exhausting all of this can be.  

My stepmom, Sheila, married my dad nearly 50 years ago, and within a year was thrust headlong into being a full-time parent--when my mom abandoned my then 14-year old handicapped brother. Since then she has been David's caregiver, dealing with the daily grind and challenges of having a mentally challenged son.  She almost never asks for help, and rarely complains.  And when she would vent about behavior problems or issues, I am embarrassed to admit I thought she was exaggerating.  

Well, a week ago Sheila called and asked for help. My dad, who is almost never sick, was having trouble breathing and was getting very weak, so she needed someone to watch David for a few days. Of course I said yes; I drove to Knoxville and brought David here until things "settled down" at their house. I figured, how hard can it be? I've known David my whole life, so I knew what he was like.  Piece of cake, we thought. 

Fast forward seven days. I am convinced Sheila is a saint. Although David is 65 years old, and can handle basic things like eating, sleeping, some hygiene, and minor chores, he requires adult supervision. He has the mind of a child, and a recalcitrant child at that.H e only hears what he wants to hear, he is easily bored (bored=trouble), and he has his own way of doing things--his way.  Think Dustin Hoffman in Rain Man. And while Alex and I managed to get through the week, I have so much more respect and admiration for this woman. And to think she does this every day!  

My dad was in and out of the hospital twice, and is now slowly recuperating at home. Sheila is getting some rest as well, and told us to bring David back this coming weekend. Time to get back into the routine, she says. Can't thank you enough, she says. You have no idea how much this helped us, she says. She's right. All I had was a very brief glimpse into her world.   

I am humbled by our experience over the past week. I thought I knew what she goes through.  I do not.  I thought I understood what it means to take care of my brother. I do not. And I thought I was encouraging her enough, and building her up.  I was not. From now on, I am her biggest fan, her most exuberant cheerleader, and her loyal encourager.  

"Let us hold fast the confession of our hope without wavering, for he who promised is faithful.  And let us consider how to stir up one another on to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near."

That was the reading from my Everyday Prayers last Friday, along with the author's thoughts on importance of being intentional and regular in bringing encouragement to friends, family, and those God puts in our path. This morning, as I reflected on the past week, I went back to August 19th and read it again. I never cease to be amazed and awed at how God speaks to me, and corrects me, in so many different ways. It happens so often I am no longer surprised by His divine "coincidences."  

Coming to grips

come to grips - to deal with (a problem or a subject); to handle, manage, care, deal - be in charge of, act on, or dispose of

A week ago the doctors at the Oaks put in a referral for my mom to get some inpatient treatment at Park Ridge Geropsychiatric Unit.  Today she was transferred there.  While I know it is necessary, and that they are probably the only ones who can help her adjust to living out the rest of her days in a nursing home, I have ambivalent feelings all jumbled up in my head.   Guilt.  Validation.  Betrayal. Sadness. Relief. Uncertainty.  Anticipation.  Fear.  

I am coming to grips with having a mom who has mental health challenges AND dementia AND physical problems. Coming to grips with not apologizing for admitting these facts to myself and others; with being the one who has to make unpopular and unsavory decisions; with not being able to discuss mom's care with my sisters; with having to put on a front when I talk to or visit mom.  

Yes, I handle, manage, care, deal, am in charge of, act on, and dispose of.  And strangely, I enjoy doing it.  I delight in this duty of honoring my parent.  I have no delusions that she will be cured, or fixed, or pain free, or even happy. She will be angry with me, and my sisters will accuse me of exaggerating, controlling, fabricating, and manipulating. I do know, though, that she will be safe and cared for and this new phase will help the caregiving team understand her needs, and deal with her behavior. It is not easy. Or fun. But I enjoy this duty. I actually delight in this duty. I can, as James, brother of Jesus, said:  "Count it pure joy, my brothers and sisters, when you meet trials of various kinds." (James 1:2). And the more I love, the more I pursue the JOY of fulfilling God's purpose in my life.  

This has become even clearer to me as I read John Piper's The Dangerous Duty of Delight.  (I started out reading Piper's Desiring God, but my son-in-law wisely suggested I read the smaller book first...good advice!)  "Funny" how reading these books just "happened" to coincide with caregiving decisions for my mom, with my internal emotional struggle with those decisions.  

Such a journey I am on.  Such an opportunity to grow and glorify God and pursue him in joy.  For, as Piper puts it, "Love is the overflow and expansion of joy in God, which gladly meets the need of others."