It has taken me almost 10 years to figure out that I actually have a reset button and that I’m allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our almost 10 year old, I’ve hit my limit often.
However, every time I did, I pulled myself back from the brink only a little thinking it was all I needed and all I could allow myself at that time. I mean, how do you, as a caregiver, allow yourself respite time when your husband cannot take care of himself AT ALL and when your young child needs you desperately? So really, I didn’t allow myself time and mentally wasn’t in a place where I could allow it to happen. Everyone told me to take time and everyone told me I needed it and deserved it but until I believed it, it wouldn’t happen.
So hitting the reset button didn’t actually happen until I understood and accepted that I needed to do it and needed to allow myself to do it. Sure, my husband told me to take the time but again, until I (me, myself and I) allowed it to happen, it wasn’t going to happen. So now, when I know when I get close to the breaking point (I get short and angry and mean with my family), I need to totally step away from the situation.
Sometimes, the reset is a nap. Sometimes it’s a car ride around the block. Sometimes it’s a walk down the driveway. Sometimes it’s a night away if all works out as planned! But most times, it’s 15 minutes alone in my room doing deep breathing and stretching. I’d say yoga but it’s really just stretching… I sit cross legged on my dog’s bed and lean as far forward as possible and stretch my back out and breathe… I used the Headspace App to meditate for a few weeks and now, when I need the time, I can sit in my room, stretch and breathe and do a 5 minute faux-meditation.
That’s usually how I reset since while I’d love respite care, I know that I will never, ever be okay with doing that knowing my husband and my daughter need me. So if the time I have to take for myself is only a few minutes, that’s okay since I know I can calm myself down and relax and then get back in the game.
I want to do this.
I don’t want to do this.
I love doing this.
I hate doing this.
I can do this.
I can’t do this anymore.
Or no choice.
You will be frightened.
You will be alone.
You will have doubt
And you will want out.
But only you will ever know.
And only you will ever know the moments that make it all worthwhile.
I am my 85-year old father’s 64-year old caregiver. He is bedridden now and rarely speaks. His eyes do his talking for him. His eyes speak of how tired he is. He holds my hand and teaches me to be quiet and just be there. Do I talk too much Daddy? Barely a smile while nodding his head, “yes”. I laugh and try to be quiet. Our time together is growing shorter and there’s so much I want to say.
But we just hold hands.
One time he said, almost shyly, “You’re a good girl”. I stood there, suddenly 5 years old again, grinning like an idiot through my tears.
What will I remember of this last leg of his journey? All the pain and morphine? His silence? The way he reaches for my hand? I will remember all of it and treasure every moment.
For now, we just hold hands.
Nearly all of the people I’ve cared for, in the last part of their lives it turns out, the care was mine, but the giving was theirs.
It was not my gift to them, but their gift to me. It was pure grace.
Grace, that Don allowed me to read to him, even though he didn’t need, or maybe even want me to. He knew how much it meant to me to do it.
My mother watched in quiet acceptance and love as I tried everything in my power to give her comfort and attempted to lessen her pain.
My father knew as his strength ebbed, mine had to grow.
Each of them gave far more to me than I ever gave to them.
My husband was diagnosed with early stage dementia in June 2015. My heart was broken. A month later our son, Steven, died. How can a heart break twice?
My husband and I cared for each other but we were arguing more and more.
I wanted out.
But I could not dessert him. I could not put the responsibility for his care on our daughter. These circumstances have brought us closer. Our shared memories have brought us closer. We have found love again.
We live one day at a time, not thinking about the future because we have no idea if there will even be a future. Today we hugged and made a list of things that need doing so he would not forget. Then we hugged again.
It felt good.
In the autumn of 2006, my beloved husband was diagnosed with Primary Progressive Aphasia, a form of dementia. I’d noticed that this witty, funny, intelligent (two Masters degrees) man was beginning to struggle with, of all things, language. I had no idea then that nine years later he would not be able to communicate via language at all.
But the language of love and touch never left him.
On the evening before he died, a baby goat was given to him to hold – one that had had her forelegs injured during birth. He stroked and comforted her as he would have any living being. That is the moment I carry with me.
The language of love and touch never left him.
Or no choice.
You will be frightened.
You will be alone.
You will have doubt
And you will want out.
But only you will ever know
And only you will ever know the moments that make every moment worthwhile.
If you are a caregiver with a moment to share, send it to email@example.com. I will happily share it in Part 2 of this blog.
By: William McDonald, author, Old Friends (Endless Love)
Available at: amazon.com
I know I’m not supposed to feel guilty, but I do.
When we were told that the baby I’m carrying would have severe disabilities, we knew abortion was an option but didn’t seriously consider it. This was our baby, no matter what.
But that choice won’t just affect my husband and I. It will also affect our daughter.
Our decision to keep this baby, to support in every way we possibly can, and love it forever means that our first daughter will never have the childhood we envisioned for her.
I feel like we’re stealing her childhood from her.
The internet is full of beautiful stories of the siblings of people with disabilities. I’ve been reading them when I can’t sleep, which is a lot lately. I find solace in them.
But I know our daughter, my husband, and I will have to make sacrifices. My husband and I made that choice together. Our daughter will have to live with our decision.
I hope one day she’ll be happy to take on that responsibility when we’re no longer able to.
I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.
I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food, I looked around and started criticizing myself for my obvious incompetence in running a household. What kind of wife and mother lets her home look like this? How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.
I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.
I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.
Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something. I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.
These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?
Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.
Read more on Renee’s blog.
The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.
Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.
My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.
Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.
To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.
We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.
Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”. My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.
And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.
With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.
I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.
No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.
Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.
Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.
Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.
Frustration, too, to eke out some time for just myself.
Frustration is and, probably be a big part of my life for the next while. – Mimi
Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, Bob, Giselle, Harriet, Judith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.
What’s your biggest caregiving frustration?
My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie
I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet
In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa
Not having any help and everyone second guessing everything you do. – Dennis
Lack of sleep
My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina
Navigating the system
The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul
It’s okay to get frustrated
I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa
Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?
If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.
Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.
Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.
Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.
Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.
You might also find Iris’ tips for dealing with anger or Michelle’s experience learning to forgive herself helpful.
Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!
Caring for the older generation
Qi Jianguang feeds his father Qi Wenjiang at the farmhouse he rented near the construction site where he works.Du Huaju / Xinhua Son honored for looking after his partially paralyzed father For many young Chinese living in the country’s rural areas, the only way to find a well-paid job is to leave their hometown and move… (more…)
Up. Up and away… not in a balloon, though that would be fun, but in a chair lift scaling a precipitous mountain in the French Alps. Lake Benit lay hidden in a crater out of reach to David and me. We’d called ahead to find out if the chair lift would take somebody so handicapped. “Mais oui. We stop the lift, help him on, stop it again to help him off…et voila.”
I pictured the frenchness of his shrug. Imagined the incredulous are-you-mad-you-didn’t exclamations of our friends back in litigation-fearing States; the disclaimer forms we’d be forced to sign should the lift operators even agree to allow him on. This happened just two summers back when David’s balance often tipped him to the ground and he could no longer hold his body upright. Legs dangling swinging above the pines, clutching the safety bar across holding us in the chair we made it to the summit, our children and grandchildren encouraging. The only person fussing — me. Oooo. I shiver — the clang and judder of the chairlift bumping along the wire.
The scary ride was worth it — the picnic and view — a dream. Leaving David propped happy in a folding chair among the crocus and blue gentian, we scattered to explore. Shame I didn’t have my camera ready when I returned, captured the scene, David hunkered in his chair encircled by curious cows. It seems David attracts them. Once in Costa Rica returning from his walk, I met David, sheepish, behind him a string of maybe eleven cows plodding in his footsteps along the black sand beach.
Memories such as these are what support me when I sink depressed. Uplift me and remind me, Parkinsons or no, we can and still do have fun.
What I am saying, Caregivers, is don’t hold back. Be bold. Defy the damnable disease. I’m surprised how much David is still keen to do with gentle prodding.
If I have anything to offer, caregivers, I’d say jump at every chance to take a flying leap at all the wild things you’ve dreamed of doing while you can. Ride that air balloon, paraglide the air currents beside the ravens riding tandem… Learn a new language? Why ever not. Walk the treadmill? Don’t listen to fuddy-duddies who insist it’s too dangerous, just make sure somebody is with him. Compete in the Senior Olympics? Hell yes. DO IT.
David and I took up ping-pong just a couple of months ago. Fearless, at first David staggered backwards after every ball and sometimes fell, but now? He’s become a tiger. Zip, zip, his improved balance, hand/eye/mind coordination the ball skims the net.
“I’d like to sign up for the Chi Center’s Qigong Course,” David surprised me last week. So we did. Lasted the full eight hours.
“I’d like to try medical marijuana,” he declared a year ago. Helped a little but not enough to renew his card.
Fly? Why not? “If he can sit in a chair watching TV for hours, then why not in a plane?”
We ordered wheelchair assistance at the airports, found people to rent our house and took off.
Up, Up and away we went…a bamboo palapa in the trees above the beach in Mexico; snakes and rain in Belize; the ruins of Tikal in the Guatemalan jungle; hot springs and volcanoes in Chile; summers in Spain, Italy, Scotland, France…ten days in a rubber dingy riding through the Grand Canyon rapids… We crammed our lives.
“Sri Lanka was the best of all,” David said one day thumbing through an album and laughing at the image of himself wielding a machete attempting to hack open a coconut and remembering how his sarong slipped.
Turning a page, topless, I walk again the black sands on the isolated beach beyond the ginger plants and lemon grasses around our shack. Call songs of love to the waves.
Could fourteen years have passed since Kerala?
“Damn weird place to honeymoon,” my son remarked when I told him we were off to an Ayurveda Nursing Home in India for a month’s treatment.”
Our quarters were a sand-floored hut, our bathroom open to the air with a resident scorpion in the basin, and bed with a coconut-coir filled mattress. We were in heaven. David checked in with a fading voice, and head constantly moving. Twenty-eight days later checked out with a strong voice and head no longer jiggling. Exhausted, oiled, pummeled, clear-skinned and healthy, “It took six weeks on a beach recovering,” we jest.
This winter we’re off to Puerto Vallarta for two weeks. Vacation and dental work combined same as every year for the past seven. Cheaper dentist, the savings make our holiday free — well ALMOST. This year I’m nervous managing David on my own so a good friend will share our space. Boost my confidence. Help me.
“Hey, hurry, hurry, David, look, a double rainbow. Let’s sit on the porch and watch,” I cry shuffling him through the door.
It is too easy for the two of us to slump feet up, stare at nothing, and slide into the ether. You too, I suspect caregivers, if you’re tired as I am.
Parkinson’s disease weighs so heavy sometimes. Squashes me flat. David’s shell sits keeled to one side unresponsive. No cajoling hauled him to the present. Would he EVER return? I pretend he isn’t there. Re-focus on Lilies, a British film I’m half watching. Fight back tears, forgetting we were once a regular couple that met and fell in love at our village rodeo 35 years ago…our courtship of eighteen years.
“Remember when…” I coax myself. Drop my caregiver mantle. Revived by memories. HAPPY ones…his joke as we signed the Marriage License, “I don’t know what the hurry is.”
My husband, my David, my best friend floats into a world beyond my reach, I turn my head and see not the wrecked human he now is but the sensitive, gentle being who first introduced me to a moonrise — the heavy yellow orb releasing slowly from the mesa flooding the Galisteo basin so brightly we can see each rock and juniper tree. I’d noticed no such beauty in suburban England. Barely witnessed a sunset through her grey pall.
It came to me then: proportionally speaking these down years are but a small toll to pay for the thirty years of good. I have enough memories tucked into my brain to see me through.
Change the prescription of your glasses, I once heard an Indian Spiritual Master teach. I bought a pair of rose-tinted glasses. Keep them on my puja, altar, as a reminder to see the world in a different way. After all isn’t there a silver lining in everything? Difficult to think WHAT sometimes. Well…his Parkinsons, my caregiver role has brought us closer, that’s certain. Worked my character over too—most likely for the better. Parkinsons? Yes, the disease has taught me to see the less abled in a kinder light, discover what matters in our lives. Educated us in subjects we’d never heard of before P.D.
Without David I’d be rattling alone in an empty nest wanting him back…
“Give us a year together, God,” I prayed before we got married. “Please don’t let Parkinson’s Disease take him from me just yet.”
Now we’ve had fourteen years.
If your parent is undergoing surgery or is experiencing a prolonged illness, you may find yourself in the role of temporary caregiver. Understanding what to expect during the caregiving period will help you prepare for this role.
Adult children are often pulled among responsibilities to their parents, their own spouses and children, and their jobs. While temporary caregiving can be an opportunity to show your love and concern, it can also be stressful and absorb a lot of your energy. You can minimize the stress with careful planning.
First, set aside some time to make a plan. Does your home need to be rearranged or altered to give care? Does your parent need psychological or physical preparation for their procedure? Do you need preparation?
Organize Your Home
Think first about the type of procedure being done and what the recovery period physically requires. Consult with your parent’s physician if necessary.
A number of surgeries, such as hip and knee replacements, require patients to use walkers as they heal. Does your home allow for walker access? Does your parent need to be accommodated on a specific level of the house to avoid stairs?
Many procedures require special equipment, such as a bathroom bar, a recliner or a lifting apparatus. Be sure to check on all these requirements, giving yourself plenty of time to order and receive special equipment, and, if necessary, to rearrange your home.
Second, make your home safe for your recovering and possibly weaker-than-usual parent. Stabilize or remove any area rugs that might cause them to slip and fall. Make plans for a resting and sleeping area close to a bathroom. Make sure that light is adequate for an older individual to see and easy for them to adjust.
Prepare the Patient
Prepare to help your parent manage anxiety. It is normal to feel some anxiety about any procedure, especially surgery. Acknowledge this as part of your preparation. It can be very helpful to research the procedure together.
If your parent is having knee surgery, for example, it can greatly reduce anxiety to know that over 600,000 people in the United States have knee surgery each year, and fewer than 2 percent have serious complications. To complement the numbers, understanding what happens before and during knee surgery — like if radiofrequency ablation (RFA) will help or what type of metal components will be used — could ease the concerns you and your loved one have about the overall process.
You should also prepare by establishing a good relationship with your local pharmacy. Decide where you will go for needed medications before the surgery, so there will be no delay in filling prescriptions after the procedure. Make sure you have a list of your parent’s existing medications so you can discuss possible drug interactions with the doctor and pharmacist.
Will your parent be able to drive after the procedure? If not, you or someone else will have to drive them to their follow-up appointments.
Also, discuss insurance and finances with your parent. You need to know if they have any concerns about medical bills and charges, as this can impact both stress and recovery.
This is also a good time to bring up living wills and powers of attorney. While the majority of operations are successful, every adult should have their wishes on file in a will.
Understand What to Expect
Many patients spring back from surgery as soon as they start to physically heal, but it’s wise to expect some issues to pop up.
Medical interventions can be complicated. Your mom or dad may just not feel well. The procedure may have made them very aware of their aging body. Stitches might be irritating. They may have difficulty sleeping. Being in unfamiliar surroundings may be stressful. If the procedure requires dietary restrictions, they may feel frustrated — especially if they aren’t allowed to have their favorite foods.
Deal with issues as they come up. Be compassionate to your parent and show you care about them.
- Acknowledge their feelings and frustrations.
- Use humor if appropriate.
- Emphasize incremental recovery.
- Discuss the future optimistically.
- Prepare the best meals you can within the indicated dietary requirements and eat the meal with your parent.
If they are having trouble sleeping, could a television, radio or computer provide entertainment late at night? Could the two of you play cards or another favorite game? If the unfamiliar environment is an irritant, could their space be enlivened with favorite pillows or decorations?
One good method to reduce stress for both you and your parent is to set up an online social network. Many older people adapt very well to social media once they see its benefits. Many social media sites like Facebook have groups for people who have particular conditions, such as joint replacements or diabetes. It can be helpful to read those stories.
There are social media sites for temporary caregivers as well. Set yourself up on one of these sites to obtain advice and support.
Temporarily providing care for your mom, dad or another relative can be a time to bond and show your love. But it can also be a challenging time. Prepare your home, your parent and yourself for the caregiving period and know what to expect, both physically and psychologically.
Image by Unsplash
As someone suffering with chronic pain for nearly 8 years, I can tell you it’s never an easy day. Every day and sometimes every hour can be different, I have no control over my body and how it feels from one moment to the next. Most of the time my mind wants to do things, but my body doesn’t allow it. I know that many caregivers and loved ones have asked or thought how can I push/encourage my loved one with chronic pain in a “good” way? I don’t want to push too hard, but I also don’t want my loved one to miss out.
Let me be the first to say we really do not like the fact we can not make plans anymore. We really do want to be an active participant in our friends and families lives. We do have the best intentions when we say we will be there and when we can not it really does bother us.
I decided to ask the chronic pain community how a caregiver or loved one can encourage someone with chronic pain. Here are our top answers:
“Help out around the house or with dinner so the person isn’t too exhausted to do other things. If it’s an event type thing the person wants to go to, make the person feel like they can be honest about how they are feeling. Let them know they will not let you down if they have to leave early.”
“I’ve been blessed with some amazing people in my life that help. Support is the key. I always think of the spoon theory. I only have a certain amount of spoons, and if I want to get out to do something fun, I need the energy, which is very sparse during a high pain day. I get the most help with people offering to take my kids for the night, bringing meals over, helping with housework. I have a hard time asking for help, but this is what I’d ask for. “
“My husband and young adult kids would buy me little things to encourage me. For example, Superwoman PJ’s, because I was doing therapy at home as well as at a place, and they saw how difficult the smallest task was. They didn’t treat me as disabled, but they were always there to make my life easier in trying to regain movement.”
“Pay attention first. Be a steady shoulder second. Understand that everyone is different and it’s about the individual’s ability to push past the pain. If you can do that then you will know how to push/encourage them in a positive way. After all, it may appear we need a push or encouragement, but really what we need is support. Be supportive and that will eventually give us the encouragement you are looking to give.”
“Read as much as you can about what they are coping with. Knowledge is the answer.”
“Communication is very important. A phone call or simple text asking how you are doing is everything. Keep communicating and supporting even if the person in pain keeps declining your offers to get out of the house to do something. Support is key.”
“For an event: Listen to why they are hesitant about attending, is it an issue that could be problem solved or is it an emotional issue/fear of showing their pain to judgmental eyes? Do they know they can count on you if they become overwhelmed/exhausted or if they are faced by a person offering up free advice without understanding what it took for them to even leave the house? Are you willing to be their companion and their guard dog? Do they know this, deep in their heart do they trust this about you? This is how you push/encourage them in a good way. You let them know that you’ve got their back.”
In closing, the best way to encourage us and push us in a good way is to be supportive and keep communication open. Come up with a plan, but keep things flexible. Please remember we are already hard on ourselves and we truly do not like missing out, making us feel guilty about it is never the answer.
About the Elizabeth pain
Elizabeth Pain has suffered with Complex Regional Pain Syndrome for nearly 8 years along with other pain conditions. She has been married to her best friend for 14 years and a mother of 3 amazing children. She became active within the chronic pain community nearly 7 years ago when she started an online support group for those suffering with CRPS and their family members. She finds comfort in helping others and has found writing helps distract her from her pain. Nearly 2 years ago she branched out and started a website for all chronic pain conditions called The Unbroken Smile.
The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”
I’m sure all of you can guess what the answer was: a resounding yes.
After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.
It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.
Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:
- Managing the financial toll of caregiving
- Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
- Making sure family has adequate support system
There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.
The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.
Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.
More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.
Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.
I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.
I think about my mother a lot. A flood of memories comes over me as Mother’s Day grows closer. My mom was a beautiful, strong willed, loving parent. Our house was the place all our friends hung out. My mom would hold court at the kitchen table and they would seek her counsel on dating and share their secrets with her. She died 32 years ago.
An initial diagnosis of breast cancer happened while I was still in college. She wasn’t going to tell me about her upcoming surgery because I was away at school. I sensed something in her voice on my weekly phone call and forced my parents to tell me what was going on. I rushed home to be there for what turned out to be a radical mastectomy. I acted as an advocate for my folks and came home regularly. My mom did great for 5 years. Unfortunately the cancer metastasized to her bone and eventually moved to her brain.
Mom wanted my father to be her primary caregiver and made it clear she would remain at home. During the remaining 2 years of her life the cancer ravaged her body and her mind. She would not allow us to get any outside professional help. She was weak and needed help with moving around, bathing, and dressing. She would let her kids help her minimally with some reluctance.
For both my father and me the most difficult challenge was the massive personality change that occurred when the cancer entered her brain. She became an angry, verbally abusive, aggressive woman. My dad had a difficult time dealing with it. So did I. She threw me out of my childhood home at one point with our provocation which felt so hurtful. I wondered how my dad could tolerate the ongoing abuse?
Incredibly for us on her final day on this Earth my old mother returned. I had told her my brother and sister were on their way from California and New York to be with her. The doctors had told me she could die at any moment. My sister, father, and I held a vigil at her bed and then it happened. She came back to us. There were smiles and words of love exchanged. To the amazement of the doctors she waited until all my siblings arrived that night and said her loving good byes to them. Then she peacefully slipped away.
I am much older and fortunately wiser now. I have the benefit of 40 years as a medical social worker and life experience. I have thought about what I would say to my father and my younger self with the benefit of that knowledge:
- I would remind us that the mean person she became was not her. It was caused by the cancer, a disease whose symptoms she was helpless to fight or control. It is important to separate the medical condition from the person. I know that is hard at difficult moments. I remind myself of that when I recall that awful day she threw me out. I have come to understand and believe this is true. I choose to remember the loving mother I had.
- My mom was young when she got sick. She was only 50 years old. She and my dad never had a discussion about what she would want to happen if she became ill. No advanced directives were in place outlining her wishes about medical care, life support, or anything. It would have been so helpful to know her wishes and a source of comfort to us knowing we were carrying them out.
- Finally I watched the physical and emotional toll that being the primary caregiver took on my father. He was almost 70 years old when he was fulfilling most of the caregiver needs for my mom. He told me multiple times that he wanted to stop or at least take a break but he didn’t. He was burned out, angry, and stressed out. Dad did not let us help too much because he wanted to honor my mom’s wishes. The problem was she was not thinking clearly due to her illness and the demands she was making were virtually impossible to fulfill. I would have advised him to take more respite time and get additional professional help on top of what we were able to offer my parents.
It is always easy to look back with the passage of time and think about how we might have managed the care of both my parents differently. The lessons learned from this experience helped my father and I as he aged and needed a caregiver. The directives were there as was many conversations between us that created a level of trust and understanding. We altered the level and intensity of care he needed as his medical condition altered with him and it was a collaborative effort among my siblings and my father. We helped him to die with dignity at age 96 feeling his wishes had been honored. That gave us all a measure of comfort that will stay with me forever.
Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.
We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.
She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.
Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.
As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”
Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.
Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.
We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.
I could list many experiences we have tried, but I’d be writing a book. We have had many supportive people in our lives, but it doesn’t help as we face our aging future.
Desperate and tired parent caregivers!
Anita & Gary
Over a fourteen year period, I had five different family members who needed help quickly and unexpectedly. Did I live near any of them? NO! Was it worth it? Yes it was! Would I do it again? Yes, but admittedly with some trepidation. Was any of it planned? Absolutely not!
Would I be better prepared? Yes! Did I learn more than I ever could have imagined? Yes…and then some.
All five experiences began with a phone call. Each call was from or for someone in crisis. Each call meant I needed to respond quickly. And, all calls meant flying or driving long distances to meet the needs of the crisis at hand. With this came still more phone calls, juggling schedules, buttoning up things in my life, packing quickly, finding flights and organizing my world as best as possible before leaving.
With long distance care came a sense of panic. I got better at it over time, but honestly, I never did get used to it.
I’m no expert in long distance caregiving, but have survived five experiences with family members, where one phone call put me on high-alert and launched me into action. How I helped varied with each person—their life situations, ages, state of health and how close we were. Each time, I learned new skill sets and better ways to cope.
My background as a clinical and school social worker gave me a leg up on knowledge about the system, finding resources and helping people in need, yet I wasn’t fully prepared for the emotional aspects of the “job” of caring for a family member from afar.
If I knew then what I know now, I might have had many of the same feelings and challenges, but not been as frightened or felt so alone. Sure, I had people around me who cared and offered me support, but the difference was the newness and suddenness and way things seemed to pile up on me. I was left feeling alone, and like I was drowning in a sea of stress. Everyone’s story is different, yet a common thread exists in all of our experiences.
Living far away from our loved ones doesn’t mean we aren’t connected. Certainly, some people aren’t connected; some people wish they were and some don’t.
When the need arises to help a family member in need we have a choice, drop everything and try and do it ourselves and/or share the responsibility with others, be it friends, family, or paid assistance. This is not meant to judge, but to clarify and identify some of our choices.
It all sounds so simple on paper— like a logical set of options. Unfortunately, the emotional aspect of the many layers of caregiving make a difference in how we cope with the hand we’re dealt. How we can be the most effective advocate for our family, in part, depends on the personality we bring to the role and our relationship with the person in need. And then there’s the practical knowledge we possess regarding everything from where they do their banking, to whether or not they have a POLST or Living Will.
I was quick to learn that as someone who was trying to help a family member from afar, establishing myself as a strong and effective advocate was essential—and sometimes even life saving for those I cared for.
The dynamics of taking care of a sibling differs greatly from taking care of a parent, aunt or uncle. Family baggage can color this care, and it takes understanding, strength and the ability to ask for help when we need it ourselves.
My own feelings of guilt from being away when I was needed or wanted to be at home was one of my biggest challenges. On the flip side, it was excruciatingly difficult to leave family members in a hospital, nursing home or hospice when I had to leave.
This was probably the most difficult part of my long distance caregiving experiences. I tried my best to make what felt like a lose/lose situation into a win/win. But I couldn’t. I forever felt I had one foot in and one foot out when it came to being at home or being with my loved one. Social gatherings suddenly felt awkward and foreign to me. I couldn’t fit in, harboring feelings of guilt for having fun. I felt this most while caring for my brother.
Like so many of us, I tried to be the hero at first. I took my role as caregiver very seriously and wanted to master the twists and turns. I learned the hard way this wasn’t realistic. I felt I was “bothering” people when I needed support or simply raged about my frustrations. I found I couldn’t do it alone though I started off wanting to.
While caring for my brother, who’d been diagnosed with cancer, I sought professional assistance from a Life Coach when I accepted I could not do this alone. We’d speak by phone, eliminating the need to be physically present for our sessions. At the time, I still felt I had no time for this, though now I honestly wish I’d found this coach during my first caregiving experience. It was a Godsend!
What helped most was accepting and understanding that my feelings were normal. I learned taking breaks was necessary, warranted and okay. Even when I couldn’t be there, I checked in daily with family members and/or the staff caring for them. My calls let those caring for my family know that I was concerned and vested in their well-being. And, I found most facilities welcomed family support, though I can’t say that all of them did.
I was fortunate to be someone not afraid to ask questions. I was very invested in making sure that my family received the best possible care and attention, even when I was not physically there to advocate for them. Daily involvement, even by phone, is time consuming, but well worth the effort.
My Short List of Lessons Learned
- When we get the call we have a choice to help or not help. If we do choose to help, then we must arm ourselves with support, information, resources, backup, and ways to take care of our own needs. Knowledge is power!
- Find someone to talk to, be it professionally or via friends and family. Be prepared that some friends do not want to know the drama and the details. Try not to take it personally.
- I learned that I could not control everything. Yes, we all know this intellectually, but in my caregiving role, I felt like a failure when I could not help ease someone’s pain, or change the course of events, or make a nurse or doctor behave more empathetically or with compassion.
- Find who to talk to in the system of care, be it a hospital, nursing home, assisted living facility, hospice center or wherever your family member lives or is receiving care. Try to find an ally within the system; sometimes it may be a receptionist in a nursing home.
- I learned that how we speak to those who care for our loved ones, be it a nurse, aide, social worker, physical therapist PA, etc., our tone, that is, how we ask for help and who we ask make all the difference in getting the help needed.
- I learned it’s of the utmost importance to educate oneself about our loved one’s illness, their treatment recommendations, the care protocol and what systems are in place to provide that care.
Of the countless lessons learned over my fourteen years of long distance caregiving, one key lesson was how important it is to “plan for the worst and hope for the best,” be it regarding finances, medical care or end of life planning.
I know that I am not alone. Like everyone, I can only speak to my own experiences. They were personal, unique and filled with hurdles—but also blessings. I am sure that if you are fortunate enough to be able to drop everything and help those you love, though it may mean some personal sacrifice, as you look back, you will feel and know it was the right thing to do. Caregiving is a very fulfilling experience; albeit a very difficult and life changing one.
Once upon a time I thought that tragedy only happened to people on TV. I think many of us millennials were taught to think that nothing bad could happen to us. We were normal, we all won awards, we were protected from the world. It was all butterflies and rainbows. I don’t fault our parents for treating us that way. Like every parent, they do the best they can.
Before Huntington’s Disease entered my life, my view of people dealing with tragedy was that they were all angelic. They didn’t swear or have bad days. They didn’t have moments of darkness when they just couldn’t stop crying. In the news, these people rose up from shitty situations and became beacons of light in their community. Or maybe they found religion and found their own peace in that.
And so, when my mother was diagnosed with HD, I thought maybe that could be me, too. I thought that maybe I was one of those inspirational people. I read books about religion and finding peace. I even ran a half marathon just to prove that I could. I was stuck in a spiral of how I was supposed to grieve.
Tragedy changes aspects of you. It doesn’t change your core. I’m still snarky and sarcastic. And while I believe I’m a more patient, compassionate person since HD has entered my life, I still get frustrated at slow drivers on the 101 and still love watching trashy reality TV.
It’s okay to be normal. It’s normal for things to be shitty.
I know quoting the movie “Now and Then” does not make me seem intellectual. But truly, the most meaningful quote in my life right now. In an age where we are constantly surrounded by inspirational stories, impossibly perfect Instagram shots and the endless parade people fighting against all odds, I think it’s important to remind ourselves that it’s okay to sometimes wallow in the shittiness of it all.
Nearly two-thirds of the more than 5 million Americans with Alzheimer’s are women. NEW YORK, May 8, 2017 /PRNewswire-USNewswire/ — Women are at the epicenter of the Alzheimer’s crisis, and the burden on women is never more apparent than on Mother’s Day, when families come together to celebrate their mothers and grandmothers. The disease places an… (more…)
For more than thirty years, I’ve been a caregiver for my wife through a medical nightmare that continues to bring new challenges—often daily. With a surgery count that has mushroomed past six dozen, and treatment by now nearly 100 different doctors, this journey shows no signs of slowing down. Along the way, I’ve had ample time to make virtually every mistake one can make as a caregiver. Sometimes, I feel like the “crash test dummy of caregivers.”
Through this journey and through all the mistakes, I’ve also gained hard-won wisdom, and experienced teachable lessons on the challenges, predicaments, and heartache of the caregiver.
One of those teachable moments came following a snowmobile excursion in the forests of Montana with our youngest son, Grayson.
Ten miles from the paved road in a tiny town in Montana, my wife’s family’s home backs up to the national forest. No stranger to snowmobiles, Grayson, and I took off into the mountains and traveled deep into the vast Montana wilderness one afternoon. Trails are marked by reflectors posted periodically on trees, and if you are not paying attention, it can be easy to miss one of those markers. Although logging in many hours on those trails, this particular day was a windy one, and the fresh snow covered any tracks from previous riders made along the trail, and I missed a marker. Grayson and I found ourselves on a slope, in a deep snow drift, and my machine sank into the drift—and quickly became stuck.
Getting a sled out of deep snow is not too bad if you have two people, but the problem was, I didn’t know where I was. We’d have to work to get the machine freed and somehow make it back up the hill (in the soft snow) and find the marker. So if we spent all our energy digging the machine out of the snow, we still ran the risk of getting stuck even worse unless we knew where the trail lay, and could get our bearings there.
As the sun lowered over the peaks, the temp dropped. The wind howled and snow whipped around us, and I have to admit I felt more than a little unsettled. I wasn’t thinking about the house; I wasn’t even thinking about five miles down the mountain. I simply wanted to find that next marker, navigate to a place of safety, and get my bearings.
After a systematic search using Grayson’s machine, which he had kept back away from the soft drifts, we found the marker. Then, we worked together to free my sled from the deep snow. With my heart racing, I gunned the machine, felt it take hold, and made a beeline for the marker and the trail—where I knew the packed snow would make it easier to navigate, and give me a moment to catch my breath.
Arriving on the trail, Grayson and I then safely headed down the mountain.
Now, why was this a teachable moment for me as a caregiver?
We caregivers often find ourselves stuck in precarious circumstances—with deteriorating situations. Even if we spent the resources (money, energy, time) to get “unstuck,” we don’t often know where the path to safety is, and we risk getting in an even a worse spot—with fewer resources.
We need to know where the marker is. Stuck in that snow drift, I wasn’t thinking ten miles down the trail; I wasn’t thinking five miles down the trail. I just wanted to find the next marker and regain my bearings.
As caregivers, we often can’t think years, months, or even weeks down the road. We simply have to take the next right step and stay on a path to safety—and follow the markers to stay on a trail that is often hard to see.
In that snow-covered field, I couldn’t simply walk around. The snow was so soft that I sank up to my waist at times and had to be careful where I stepped. Each time I floundered in the snow, I risked getting hurt, wasting precious energy, stepping into a covered hole, and even compromising the ability of my son to help me.
This is our daily life as caregivers, but we often push ourselves to deplete what meager resources we have (physically, emotionally, and financially), and many of us get hurt in the process.
The markers are there, if we look for them. They’re a lot easier to find if someone who knows the trails helps point to them.
The first and easiest marker to find when we are freaking out and don’t know what to do is to “Do the next right thing.” Sometimes we work ourselves into a froth living way out in the wreckage of our future, and we’re paralyzed with fear in the present. The next right thing may be to just take a nap, have a bowl of soup, make an appointment with a physician or a counselor for ourselves, or call a friend. We don’t have to figure it all out in one afternoon. As caregivers, we simply encourage one another to do the next right thing, and before long, we will see a pattern of healthy choices.
That’s good to know, because “Healthy Caregivers Make Better Caregivers,” and today’s a great day to start being a healthy caregiver.™
Resilience. Tenacity. Strength. Toughness.
Whatever you want to call it, caregivers need it. It’s that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what.
Inner strength is a decision.
There’s no trick to it. There’s no pill to take. You just decide that you’re going to do this, come hell or high water. And then you do it, no matter how hard it is.
Put one foot in front of the other.
We all take it one day at a time, one moment at a time. Fear, despair, anger — emotions are irrelevant when you’re busy. Acknowledge your emotions, see what’s behind them, and then move past them.
Know why you’re here.
Everything I do as a caregiver has a reason for it. I’m here because I choose to be. Are you doing this to show your love and devotion? Are you doing it because you’re living your values? Are you doing this because you love helping people? Know your reasons and remember them when things are tough.
It will always be hard.
Caregiving gets easier, but it’s never easy. The harder I push myself, the more I can do. I’m stronger than I can possibly imagine and I know that. We all have a source of strength — cultivate it.
Create a bubble.
I don’t care what other people are doing, I care about what matters to me. By surrounding myself with a community of people who put community first I save myself from the opportunity to feel jealous about other people’s lives. I’m committed to my life as a caregiver and I don’t want to waste time on a life I’m not living.
No matter how strong you are, we all have our breaking point. Respect it. You can’t go 110% all the time. It’s okay to give 50% if that’s what you need to do to keep moving forward. You can’t sprint forever.
You need highs and lows.
Being on high alert all the time will kill you. Our bodies aren’t designed to be hyper vigilant at every moment, it wears us out. There are boring moments, even in the ER and the ICU. A lot of them. Cherish them. Allow yourself to be bored.
So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.
We know that’s not quite how it works.
Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.
Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.
Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.
It’s worth it to keep asking and keep searching.
I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.
That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.
In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.
But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.
Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.
I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.
We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.
Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.
I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.
The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.
My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.
He is mostly a happy young man with a great smile and a laugh that brightens up the room.
When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.
So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.
My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.
After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.
The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.
I asked for help and didn’t get any more times than I can get into.
People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.
My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.
Joy Meason Intriago
I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.
Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.
Some responses have been edited for grammar and clarity.
Are children who have a physical disability as content and satisfied with their lives as children who don’t? Yes! In this enlightening talk, Lisa Thornton, a physician who specializes in the medical care of children with disabilities, will share insights she has learned from the parents of her patients who raise happy, well-adjusted children.
Lisa Thornton, M.D. is a mom and a Pediatrician who specializes in the care of children with disabilities. She is passionate about providing reliable health information for families and believes that childhood is the best time to develop lifelong healthy habits for the body and mind.
She is Medical Director of Pediatric and Adolescent Rehabilitation at LaRabida Children’s Hospital and Schwab Rehabilitation Hospital. She is an assistant professor in the departments of Pediatrics and Orthopedic Surgery & Rehabilitation at the University of Chicago Pritzker School of Medicine.
Dr. Lisa has provided health commentary for numerous TV shows and other media outlets. She has lectured to corporations and academic institutions and has led audiences to a greater understanding of a variety of topics including childhood obesity, childhood disability, and overall health and wellness. She is married with 3 children and has a brother with cerebral palsy.
It’s lonely here outside your world. I trace your profile with my gaze, the familiar silhouette on the pillow beside me for more than thirty years.
One room, two chairs we sit together of an evening in the rumble of television’s tunnel journeying ever closer to a mysterious world beyond our own. I would prefer music, scrabble, conversation. Head back, jaw slack I notice his eyes are tight shut.
“Open your eyes darling,” I encourage. “How can you possibly know what in God’s name is going on? ”
I don’t understand why him watching television through closed eyelids should that bother me, but it does.
“Beam in Scotty,” I joke, desperate to bring David back.
On good days the cracked vessel in which David resides releases the smart adolescent and child psychiatrist, the man he was, the man I married, my lover-husband and best friend, and we swap chit-chit before he sank turtle-like beneath the waves.
Has he even heard me, the stories I tell him, my questions?
“David, David, I’m talking to you.” Words roam, no sign of landing in his mind.
Is David—anybody—there? And if there is, is he who he was, or the he who he is now? The question tumbles many times a day. Each time, my answer shifts. All I know is I am lonely and miss him.
“Be thankful you still have him. You will miss him more when he is gone,” I tell myself, the breath of his human form, the endless chores of tending, the opportunity of purpose. I see myself padding the vacuum of this empty house oppressed by unnatural silence. His chair vacant, I eat alone.
I watch the effort of his emerging the crumpled human slumped voiceless on his dining room chair each breakfast, the snail energy it takes to pop back from inside his shell. By increments his head realigns with his neck. He snap-traps the drool sliding from the left corner of his slackened lips, retracts his left arm, always his left, through the armrest and creeps his blood-swollen fingers on the tablemat searching for his fork. His eyes are still shut, you see. He relies on feel.
No warning, without reason, all of a sudden, the David I married is back.
“Coffee please…,” Breakfast carries on as if he never WENT. “I’d like the marmalade, please. Do we have any plans for today?”
“He’s like a sea turtle,” I describe him to friends, “sinking then surfacing to life.”
Anybody home, I wonder of my David, the times he switches off. It could be minutes, half an hour or more, I find him, a statue frozen in mid-action sitting on his bed or chair, a sock dangling from his hand. Sometimes I catch him standing immobile, his face pushed against the wall. Can he hear or see me? There is no way I can get him to respond. Take today, Tuesday.
Breakfast over, well the eating part of breakfast, David flopped over with his face on the plate. I have given up trying to bully him to sit up. It’s best to leave him till he re-surfaces. When he’s that switched off there is nothing I can do. I cleared the table as best I could. Reaching awkwardly into a low cupboard, I lost my balance sending the butcher’s cart flying and me crashing to the floor. I hurt mostly from shock of landing on my back. Did David stir, raise his head? Not a muscle.
What if I really hurt myself, fell unconscious, I worry. How long would the two of us be alone inside our walls? This morning’s minor mishap is a wake-up call, one I’ve not yet thought through.
“Ah, he refuses to wear one of those press-button gizmos round his neck,” I second-guess the unspoken solution you’re offering me.
“If not him, then YOU wear one,” a voice whispers.
It’s a consideration I don’t much like the thought of, but I get the point.
I shudder when I recall Christmas two years ago. Speed-walking to catch the propane truck, I tripped and did a Stephen Hawkin flat face smack into the paving stones. Wham. Blood. Twisted limbs. Agony. Knocked momentarily to another world, my screams blended with the truck’s roar and gas hiss, and I lay there unheard. When the delivery men finally heard my “Help. Help” and carried me inside, David never raised his head.
I push that example away…too painful to face. Could I bleed and DIE, the house go up in flames and still he wouldn’t notice?
That puts me in mind of our holiday in Mexico three year’s ago. David stretched out on the sofa inside, me on the balcony tapping away engrossed in what I was writing. Seeking the perfect word I raised my head. Black clouds of smoke billowed from the French doors obscuring the room beyond.
Inside three-foot flames licked the extraction hood above the stove eight feet from David.
“David. David. Get out the room’s on fire.” And rushing in I yelled, “Get up. Get help. Quickly. Quickly.”
Struggling from the couch he made for the door, while I slammed a saucepan lid over part of the blaze—my bag of teas, spices, punched the phone to summon help.
“Reception. How may I help you?” The hotel operator drawled. “Now? Would you like someone to come up?”
“Yes. Yes. Immediately.” Was the woman nuts? Nobody appeared.
Then the greatest luck, two cleaners and a maintenance man happening by, rushed in and took control. Within half an hour the flames were doused, the smoke stains scrubbed and cinders thrown away along with the blackened toaster, extractor hood and frying pan. Oh the shame. It was me. My fault. I had switched on the burner beneath a bagged stash of precious teas, spices and special treats brought from home.
tomorrow when I lie alone
when I have no shirts of his to wash
when I clear one plate from the table
when the back porch swings empty
I will wish…
I will weep
stare into the laundry basket
seek his pair of shorts to add
search in vain for his missing sock
I’ll not complain
today I swear
promise only kindness
grumbling no more at
his snoring snuffling sleep
happy to still have him
What’s keeping me up at night?
Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It’s a hard struggle.
Worrying about my dad. When he gets the hiccups at night. His really really bad teeth. The fact that he runs out of breath while he talks. How much longer is God going to let me keep him? How to keep from reacting when he pushes my buttons.
What am I really proud of right now?
My son. How much joy and unconditional love I get from him. How he makes life fun. Learning more about Autism Spectrum Disorder so that I can help others understand my son more.
What keeps you going when you feel like giving up?
My son. The joy and love that I get from him keeps me going through all of it. The bad, the ugly, the wonder, the joy, the huge love that I feel for him, all keep me getting up every day.
Carol Spence had been an accomplished artist all her life, first working in graphics, and then as a maker of handcrafted, miniature dolls, which she sold at craft shows and galleries. Three years ago, without notice or explanation, she took exclusively to the canvas, creating work that little resembled her past work. Two-dimensional… (more…)
Rebecca Doig’s Alzheimer’s reached the point of needing constant care when she was only 31.
Amy Norton was diagnosed at only 43.
At the age of just 39, Laura Borrell is one of the youngest people to be diagnosed with frontotemporal dementia, a condition that usually affects older people.
Early onset Alzheimer’s turns children into caregivers for their young parents.
The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.
The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.
Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”
Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.
The next day, I saw the same advice in a comment here:
If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski
When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.
It seems obvious, but it’s so easy to forget to do in the moment.
Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.
This isn’t going to be a popular opinion. I’m not here to get you angry. If you don’t want to read about carees who are emotionally abusive, skip this post.
Why is it somehow acceptable for people who need caregivers to be emotionally abusive?
Some care recipients have had strokes, dementia, or TBIs alter their behavior. Inappropriate behavior with a medical cause is not what I’m talking about.
Some people are just assholes.
My mother wasn’t the best parent, but she took care of me. Not like some other parents. I had a good childhood.
We were never close when I was young and we weren’t close once I was an adult. It was clear she favored my brother, but so many parents do. We did the obligatory parent/child things. Spent the holidays together.
I avoiding spending much time with her, because I found her to be a toxic person in my life. I didn’t need her criticisms of my weight, my choice of life partners, how I raise my own children. I have a happy marriage and children who are doing well and love me, but she was never happy with us. She made her disapproval known, not only to me, but to anyone within ear shot.
If she wasn’t pointing out my faults and failures, she was boasting about my brother. It always struck me as curious, since he’s usually in-between jobs, struggling with his drinking, and breaking up with his latest girlfriend. But this was just something I needed to accept and I did my best.
My brother calls me when he needs money. Or every year or two for bail money. But mostly he and I are both fine to live our very different lives. I wonder what our relationship would be like if she hadn’t coddled him while belittling me, but I do my best not to waste time thinking about it. It’s just a way to understand and accept why my brother and I were never close. He grew up being told I was a failure, how could he feel any differently?
My husband and friends all seemed to understand that while I didn’t want to cut my mother out of my life, I needed to keep my distance. Rather than being a source of support and wisdom, like some mom in a Hallmark card, she was a source of stress and self-loathing.
Few of us have Hallmark card families. I’m certainly not the only one with a strained relationship with a parent. It made me sad sometimes, but it was just one thing in a very full, complex life. I’d learned to accept it, as much as I felt I ever could.
And then my mom got cancer.
I’d worried about what would happen when she got old. I kind of knew it’d fall on me, but I’d planned for this by saving for both of our retirements. I anticipated writing cheques and managing paperwork when the time came. I had a good decade — or three — before I’d need to hire home health aides and companions and whoever else. Plenty of time to save. Plus, she has savings of her own.
Getting cancer at 50 was not part of this plan.
I guess it’s just as well, since she refuses to accept help from anyone but me. Why? Because she says it’s my responsibility.
She tells her friends, her pastor, anyone who asks that she’s just fine. She doesn’t need any help. She tells my brother not to worry about her.
She demands I move in with her. I agreed to stay with her while we was recovering from surgery and going through chemo. I wouldn’t have wanted to go through that alone.
Oh, if only I’d thought about what I was getting into! She turned into an evil princess. She demanded I wait on her hand and food, around the clock.
I knew I would need to do all the paperwork, run all the errands, do all the cleaning, and cook all the meals. I’d signed on for that. I didn’t expect to do them while she screeched bloody murder in the background. She wants these things done, demands that they’re done, but then resents any moment I’m not at her feet, waiting for her next command.
Her doctors said it would be good for her to get out of bed, get some exercise, get back to doing things on her own. She’s not supposed to be bedridden. But the bed is her throne. She’ll only get up on her own if I take that goddamned bell away from her.
It’d be one thing if she were simply demanding. But she’s also mean.
The names she calls me! She’s spent my whole life making it clear that she thinks I’m not pretty enough, not smart enough, not thin enough. They used to come as snide comments and backhanded compliments. Now she just yells at me for being a fat big, an ugly stupid lazy bitch, a useless good for nothing unappreciative child who ruined her life. Because her tea is too hot or not hot enough. Because she wanted the vanilla ice cream with the flecks of vanilla in it. Because I was busy folding her laundry and didn’t rush to her immediately when she wanted me to change the channel.
She gets up out of bed to wake me up to tell me to get her something that was on her nightstand.
All the yelling must take so much energy.
It took me energy to not just walk away. And then I saw her at the cancer center, walking around, laughing, getting up to get things for herself.
Why was I forcing myself to stay and take care of this horrid woman when she’s perfectly capable of taking care of herself?
Yes, as someone going through chemo, she could use some support. But will she die if I’m not there? No. She’ll simply save herself some yelling.
And so I left. Two months of her constant yelling, not letting me sleep, and telling me how worthless I am was enough for me.
My whole life, people have heard stories of my mother — or been lucky enough to meet her — and have reassured me that I was right to keep my distance. She is the classic toxic person all those women’s magazines warn you about.
But now that she has cancer, these same people are giving me a hard time about not staying to take her abuse.
Having cancer doesn’t make it okay to be an asshole. You can get frustrated, be upset, snap at someone in exhausted frustration and fear. But you can’t be mean to people for the rest of your life.
I read somewhere that in Cinderella it was originally the mother who was evil, but they changed it to an evil stepmother later on when the idea of motherhood became sacred. It was no longer acceptable to believe that a mother could treat a child that way.
I’ve spent my life not being good enough for her. I guess this is just one more thing to add to the list: abandoning her to die of cancer.
What’s your life really like?
Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.
Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.
Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.
What’s keeping you up at night?
Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.
I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.
What are you really proud of right now?
Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.
What keeps you going when you feel like giving up?
Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.
Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.
Reading about people who contributed greatly to society against all odds.
Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly
“My civil rights are being invaded.” His words.
His custodian, duty demands I, his wife and caregiver, keep him off society’s scrap heap. Fight on his behalf. Protect. Defend.
I learned how at age six in the land of my birth, India. My loving Ayah disappeared. My mother and half-sister too. No explanation. There one day, gone the next. The British Courts dragged me and my baby brother away and into the care of strangers. Months later my father appeared. With my arms wrapped around my brother, we were shipped to England, and dumped abandoned in a children’s home until I was almost eleven. Walnut hard mantling a vulnerable interior nobody, but nobody saw inside my shell. I made sure of that. I am that tough-nut person once again. Have to be.
“En guard, messieurs,” I prepare for battle, brandish my foil.
I pinched my arm. Proved I was ready to fend the missiles aimed at David, me, our space. When I played Lacrosse at boarding school in Goalie position, just the same. Thwack. In terror of injury, I lobbed back the hail of balls before they ever struck my face and padded body-armor. Now, as David’s advocate, the same. Thwack. Thwack.
For two agonized days after a fall, David allowed no EMT near.
Be prepared caregivers, its our loved ones right to refuse resuscitation and may seize the opportunity to exit earth.
“What if your hip is broken, I find you unconscious, have pneumonia, a heart attack… what shall I tell the EMTs? Make you comfortable and leave, or take you to hospital?” I pressed. No answer.
Pain, the clincher, forced his choice.
“Call 911. I need to go to the ER,” David pleaded. Saved his life as it turned out.
Apart from a fractured vertebrae, tests revealed bi-lateral pulmonary embolisms caused from hours of sitting on our recent Trans Atlantic flight—another task for us caregivers: nag your loved one to pump those legs and stamp those feet every hour you’re in the air.
I could work just as well on my laptop in his hospital room as well as anywhere, I convinced myself. And for the next week hunkered down beside his bed for six, seven hours. Just as well. One morning arriving at ten, I found him defeated, slumped forgotten, unwashed, un-unfed in a grubby, un-made bed. New temporary nurses shrugged when I complained.
“He’s supposed to be dressed and sitting in a chair. Doctor’s orders,” I admonished.
“It’s good to have an advocate,” the on-call neurologist approved when I complained. Yeah. But what if I hadn’t been there? The light was already out in David’s eyes.
There’s a battle yet to come.
David’s discharge looming, three-weeks in-patient rehab was arranged—not to the hospital’s in-house unit as I requested, but to a facility for the desperate.
“David failed to meet the necessary requirements,”
The physio therapist squirmed. Tall and blonde, he forced a smile. “He’ll be transferred to a residential home. Yesterday your husband only walked ten paces, and to qualify he must show improvement every day. That’s the protocol.”
“Protocol be damned…. And do you know why he only took ten steps?” I sneered. “Maintenance taped his door to keep him in his room because the hallway was being waxed. I insist he be re-assessed.” One look at me, and they agreed.
With four hours of therapy daily, I watched him claim back his functions over the next week until…
…one afternoon visit ten days into his stay, David’s eyes swiveled upwards, to the window sill, and from wall to wall, “Look — white cats. See them? There’s another and another. What am I doing here in a cattery?”
I froze, frantic. One back-slip and he’d be expelled from the program.
I dashed home, and with a psyc-nurse friend checked his patient portal. Yesterday’s urine tests: abnormal, abnormal—every one. An infection — oh Praise the Lord. He wasn’t bonkers. I exploded in tears.
“You’re mistaken. His tests were normal,” Dr. White-Coat in charge contradicted. “No sign of infection.”
Wrong. Wrong. Did I have to fight every inch to prove it? “See — it’s written—yesterday.” I jabbed my finger at the date.
White-coat disappeared. Returned with his head hung low having double-checked the lab’s report. I’ll give him that.
“I owe you a big apology.”
Granted a reprieve, David stayed. But what about computer-illiterates, those without computers wrongly diagnosed with no-one to speak for them, those unfortunates carted off to end-of-life homes where they should never be?
So toughen up, sharpen your swords caregivers, it’s up to us to fight.
The 20 days in rehab allowed by Medicare was up.
“We want him admitted into a residential home for four weeks. He is not ready to go home.” Not a question, a pronouncement.
“Further therapy…” they said.
“Further therapy?” I snorted, for I knew therapy in the facility they suggested happened maybe ten minutes a couple of times a week if that. And worse as a “fall risk,” tied down to his bed attached to an alarm forbidden to visit even the toilet un-escorted, he’d lose his strength to walk.
“He’ll turn up his toes and die in there. I’m taking him home. Medicare covers twenty home visits — a nurse, physio, O.T., and speech therapy. He’ll get all the help he needs.”
Buttoning my ears, I hinted at the patient’s right to self discharge. Reluctently Big-Chief-White-Coat agreed I could take him home. “On condition you have round the clock help for him, and the caregiver completes an hour’s safety training with the unit’s Physiotherapist.”
Problem. Excepting me — no caregiver. I wracked my brains, remembered a friend. He’d looked after an elderly man for years till relatives hauled the poor chap off to end his days in residential care. No way would I let that happen to David.
“Can you help me?” I begged my friend. “Pretend you are David’s caregiver.”
A perfect actor, he donned a white coat and trained with the physio. Freed from the ward’s clutches stiffling our giggles, we whisked David up, up, up and away. I slipped a couple of tens into my friend’s pocket at the curbside, hugged, and fled.
Home-alone, now what to do? I stared at the box of shots given me by the hospital. “Twice a day for ten days…nothing to it,” they waved me away.
Miraculous fluke: my GP brother-in-law and sister from Oaklahoma happened by unexpectedly en-route to California. Demonstating how to pinch David’s belly flesh and stab, I winced and plunged the needle.
Having him back home was a gift. David had no need to say it, gladness, relief, happiness sparkled in his eyes. I crawled into bed beside him burrowing beneath the duvet. How lucky we were.
“Night, night darling. Sleep well.” We both did.
I look forward to your comments.
Evelyn Corsini and her family allowed photographer Francine Orr to document the final months of her life, to observe caregiving. Orr’s interest was journalistic but also personal: As the caregiver for her father, she had been living the story herself for more than a decade.
Video by Francine Orr/ Video Editing by Bethany Mollenkof
How many times i risked leaving mom alone …she was still capable of walking and her dementia was still not that bad… To get an hour away at the local coffee house located in Silicon Valley’s Mountain View.
I remember being in coffee houses trying to strike up a conversation and when i answered to “what do you do?” with “I am sole caregiver for my mother who has dementia” was brushed off and abandoned like a tsunami warning had sounded.
Yeah…they would not be able to do it…cowards. This was like at my 6 month mark. She was in such bad shape when I got there my sisters thought she would live only 3-6 months. Well that was. THEIR level of abandonment caregiving. I cared for her a dozen years…got her healthy enough for life again. And I did bucket list of concerts and museums and experiences.
I do want to add though that there IS a vein of decent humanity…who will stick by you… I developed a community of care out there at 4 cafes, our hair salon, the supermarket…and eventually the nursing home. The staff at the senior day care center. We were “a thing” once the barrier was broken with staff rushing to welcome us. I made that happen for us.
We were lucky to have as next door neighbors a family raising a disabled boy…and they frequently had playdates at their home with families from their special ed class. Again…these families were rock solid and we fit in.
If you can persist through the shallows brushoff folks…you might strike gold…someone who gets it and who gets the real depth of your character. They are out there!
And in my case I attracted some folks who were top of their field.. Some “world class”…bestselling author…an important VC scout (arranged funding for the two Google guys)… an international world economist… An opera diva. All heavily involved in caring for parent or spouse… a Forbes magazine columnist who happened to be THE federal budget analyst in DC.
However the crushing burden… destroyed me in so many ways.
There will not be a “me” for my old age…nor a million dollar home to liquidate as was done for her nursing home years. (I still had to care for her 4 hours night for 3.5 years).
This GOP heartlessness regime will probably doom any meaningful relief for us… And will throw even more seniors into family care… Or family care-abuse, unfortunately.
Yeah..when does the “glad”start? I racked some upbeat memories… But i am scraping by in reality…renting room with boxes stacked around me. It seems karma does not kick in…until the next lifetime.