As the snow is falling, I was looking at pictures just taken last week of our service dog, July. Canine Companions, and absolutely amazing organization, is who trained him, and then Terry had to go to Long Island, NY for two weeks to train with him. We had never had a dog, and quite frankly we didn’t care for them. This dog has saved our lives in so many ways, and I can tell you that I’ll never not have a dog again.
It took almost three years to go through the whole process with Canine Companions; but, it was well worth it. The company owns the dog, so they are always there if we need help of any kind. They also have the ability to check on the dog and make sure he’s being treated well. When it’s time for July to retire (which we hope the day never comes), we can then adopt him. Some people are only allowed one dog where they live, so sometimes they have to “return” the dog to Canine Companions, and then train with and receive another service dog.
July is an old soul as nothing really can rattle his cage. He does love to see and play with other dogs; but, otherwise he’s just a mellow boy. He has become an amazing companion to Terry; but, he also helps pick things up, pull things open, go get help, retrieve things, and so many more. He was taught 50 commands, and from there we practice those and then mold or change them to fit tasks that assist Terry. Terry actually taught him how to bark quietly.
Terry actually taught him how to bark quietly. July never barks on his own, and it’s even hard to get him to “speak” when we have a treat. He has that deep bark that let’s you know “I’m a BIG dog.” Well, Terry will hold his finger to his lips and go “Shhhhhhh, Speak” and he does this cute, quiet bark.
I recently ran into a situation where a friend asked me what I could tell her co-worker whose husband was in the hospital after a severe stroke. He was in an induced coma, and his wife was dealing with that plus four kids at home. I know my friend was looking for the words of wisdom of a veteran caregiver, and hopefully something positive that she can share with a woman whose whole life changed in a moment when her husband suffered that stroke.
So, I’m faced with a question that I sincerely don’t know how to answer. Or, is it that I don’t want to answer because I don’t have the words she wants to hear? What was going through my head as I thought about this woman’s life as a caregiver?
- She is now going to be raising four children, and a husband that will probably need more care than the kids.
- A whole army of people helping with rides, meals, household chores that eventually dwindles down to little help, and a lot of suggestions from those who have no idea what her life is like.
- She has essentially lost her husband. There will be no more dates, going to events as husband and wife, a loss of intimacy and no adult at home to talk to and share feelings.
- The loss of friends that can’t relate or understand.
- The constant grief as the disease, or in this case brain injury, progress.
- No longer receiving presents or cards from the spouse because they can’t get out to buy them.
- The loss of an income, and possibly the loss of her job because of her new responsibilities. There is a whole new list of hardships of making ends meet.
- Sleepless nights as there are many reasons she’ll be awakened to tend to her husband’s needs.
- More often than not she will be the receiver of verbal abuse, because he is angry at the situation. We tend to take out our anger and frustration on the ones we love the most.
- The loss of “growing old together,” or experiencing “The Golden Years.” She possibly will be facing the knowledge that she not only won’t get those things; but, that she’ll be a widow when her future was supposed to be the two of them.
- She will be doing all she can to keep the peace between the children and their dad, as they will most likely become resentful, and so will she.
I can’t count the number of times I have thought, why? Why am I staying here to endure all of this? Eighty to Ninety percent of couples in this situation end up divorced. The caregiver ends up with several stress induced ailments, if not an autoimmune disease where they too become disabled. Many lose every dime they ever saved, and often their homes in the name of healthcare. I have to add that Obamacare has proven to be a complete disaster for my peer caregivers.
So what do I say to soften the blow for this woman who is about to face some of the hardest days, and maybe years, of her life? There will be days she may be cleaning up after “accidents,” lifting, nursing and doing tasks she will never share with her closest friends. She may not sleep for several nights in a row, she’ll feel alone, and rejected by friends and family. She will be judged, and not kindly.
This is what I say, “It’s going to be tough; but, there are people to lean on and support groups to join.” I will tell her that her children are counting on her, and their roles will all change – possibly not always for the better; but, they are a family and together they will find a “new normal.” I will then let the chips fall as they may, because who am I to say if she’ll be able to do it, or not.
I will pray for her for strength, hope and peace. I know that God has a plan, and we have to lean on him when times get tough; but, she has to travel her own journey.
I have been lucky enough to be able to appreciate every day I wake up, and enjoy the simple things in life. My spouse and I had a solid foundation from the start of our relationship, and that has given us the ability to weather A LOT! Maybe more than we should; but, we have done what has been needed to be done, in order to survive.
1. A Call for Help
Needing emergency help is a scary situation; it’s even worse when you don’t know where you are or your loved ones can’t find you. A new smartphone app offers a solution for those situations. React Mobile allows you to quickly activate an SOS system with a touch of your phone to send an alert to friends, family members or the authorities. The “Follow Me” feature allows your GPS location to be sent to your emergency contacts.
We know this gift isn’t cheap, but we also know many PN readers like shooting, and this device makes it possible for quadriplegics to enjoy the sport as well.
The Powershooter is designed for individuals with no arm or hand movement to fire a rifle or a shotgun completely by mouth and chin. It comes standard with a power trigger operated by very slight suction on a tube. Windage and elevation are controlled by a chin-operated joystick.
3. Crash Course
We’ve all been there – watching your iPhone crash into the unforgiving ground is a moment full of anxiousness, nervousness and pure disappointment. With the iKeep Secure, you never have to be in that position again. Clip it onto your chair or belt loop. The retractable cord plugs into the phones charging port keeping it always in arm’s reach.
This gadget comes in a variety of different colors to match your attitude – or your outfit! The perfect stocking stuffer is available with free shipping to veterans using the promo code “Veteran” until the New Year, and 10% of the profits will be donated to the Paralyzed Veterans of America.
Trying to shut off an alarm clock can become frustrating. Well, forget about reaching over to hit that snooze bar. With the Moshi Voice Control Alarm Clock you can set the alarm and turn it off with only your voice. It can share the time, temperature and date as activated by your voice. It recognizes 12 commands, has three alarms, ultra-large numbers and a backlit screen and a backlit screen, which makes it easy on the eyes. Even better, you would have to set multiple alarms –just one.
Just three days after returning home from Iraq, former Marine Corps Cpl. Noah Currier was in a vehicle accident that paralyzed him from the neck down. In an effort to raise funds for physical therapy, Currier designed and sold T-shirts that stated, “He who sheds blood with me shall forever be my brother.”
Today, that one shirt design has morphed into a full clothing line called Oscar Mike. Each item in the Oscar Mike line is made in the U.S. and has a military theme. Buy one for your favorite service member or veteran this season and 10% of the proceeds will help a disabled veteran meet his or her rehab goals.
6. Game On
The kids, grandkids or even some friends want to play a fun game of Wii Sports bowling, but pushing little buttons and holding a controller isn’t always easy for people with spinal cord injuries. The Nintendo Wii Remote Switch Enabled Accessibility Kit makes it easy.
The kit requires no grasp or finger dexterity. A specially adapted Wii controller attaches to your forearm or hat to play most games with arm or head movement. Operate A and B buttons using adaptive switches with the opposite hand or sip and puff.
Works with most Wii Sports games, including bowling, boxing, tennis, golf, baseball and Wii Play’s Shooting Range.
7. Winter Mobility
Wheelblades are small, high-end skis that fit into the smaller front wheels of a wheelchair or stroller. Swiss inventor Patrick Mayer, a wheelchair user for more than a decade, says the skis help improve mobility during snowy and icy conditions. The wide Wheelblade surface distributes the wheelchair user’s pressure evenly onto the ground and prevents the small front wheels from sinking into the snow. The adjustable clamp lock covers all wheel widths from 1.8 to 6 cm.
$652 a pair, U.S. orders call 763-553-9464 or visit wheel blades.ch/en for more information.
8. Wheel Clean
Instead of slippers for your feet, get slippers for your wheels. Give them some comfort and say goodbye to dirt and streaks on your floor in the process.
RehaDesign Wheelchair Slippers and Wheelchair Covers slide right on in less than 10 seconds cover standard wheelchair tires and have a soft artificial suede finish with a special fabric on the inside to grip the tire and prevent slippage.
They come in four colors – beige, black, blue and purple/burgundy – are machine washable and can even cover the handgrips so your hands can stay clean.
9 Easier Reading
It has a base clamp, which mounts to a wheelchair frame, a flexible gooseneck arm and a multi-axis rotating head for touch screen use. If you need to enter or exit the wheelchair, The Tab Grabber easily swings out of the way. It also has retractable clips that fit any size tablet and can be attached to either corner of the device’s edges.
10. Bag It!
When on the go, it’s nice to have a place to store all the things you’ll need throughout the day – Chapstick, water, a pen, wallet, cell phone, etc. The Stay Put Pouch from Sew Creative by Heidi is the perfect solution.
The weighted top grips onto any surface. Just hang the straps over a side of your wheelchair and you have a handy place to keep all your things. Plus the bag is available in a wide variety of fabrics, including military themes – Army, Marine Corps and Air Force.
11. Mind & Body
A gift that truly keeps on giving, Beyond Disability is an instructional yoga DVD designed to teach people with disabilities the practice of seated yoga. After a devastating car accident that paralyzed instructor Matthew Sanford from the chest down, he realized how important his body is.
Sanford has created a full-length adapted yoga plan perfect for those living with a disability. The program helps connect the mind and body as a health strategy and movement of consciousness.
I have a lot to be thankful for this year, and I’m not breaking out in hives thinking of everything I have to do to get ready. Instead I’m writing some real masterpieces that you will soon see published on my Blog (www.mylifeasaprincess.com) . I use to lean on the “over the top” side of holiday spirit. It’s time to make things a little, okay a lot, simpler.
Have you heard of the drug that’s known as bath-salts, and it makes those who partake crazy? Well, I use to be the equivalent of a Martha Stewart, on bath-salts, during the holidays. Terry will concur because he had to put up with it. I was “that girl” that skipped from store to store, loved the ‘all Christmas music’ radio stations, visited with the mall Santa’s, decorated what had already been decorated. Basically, I farted sparkles in November and December.
Well, since giving up the bath-salts, I still go a little overboard; but, NOTHING like I use to. So how does a type A, LOVES the holidays,…farts sparkles, scale down? Since Thanksgiving is next week, let’s take this a holiday at a time, and I’ll share some of my Thanksgiving simplification tricks.
First, I don’t care how much you love to cook, you march your fanny to the grocery store and order Thanksgiving dinner. For the love of Pete, the menu has been the same since the pilgrims got here…you aren’t going make a new side dish that changes the face of Thanksgiving. ..order the dinner!!
If you’re going to Aunt Edna’s house, suggest she orders the dinner as tell her the benefits. Otherwise you’re still participating in chores like doing dishes, clearing the table, dodging small children on sugar highs running frantically through the kitchen; all while the men are in the living room spread out on the couches and chairs, with their pants unbuttoned, watching football.
Second, if you have a few things you just HAVE to make, let it be those dishes that can be made ahead and frozen, or refrigerated for a couple days. Remember, we’re trying to avoid the exhausting Thanksgiving schedule that you have survived year after year. You don’t need a three mile “to do” list on a day you are thankful for so many things, and want to appreciate those gifts including friends and family.
Third, if I haven’t hit a benefit that has grabbed you in making the day a little easier, think about the taste of your first sip of wine, this time in the afternoon when you’re normally sweating in the kitchen. Traditionally, by the time I get to enjoy a glass of wine, I’m too tired to.
Fourth, and I have learned this from experience…when you do order the dinner, verify if the turkey needs to be cooked, just heated, or if it will be hot when you pick it up. Yes, I was so excited about barely having to lift a finger to prepare Thanksgiving dinner that I left the turkey in the box, in the garage. I took it out with enough time to heat it up so it would be hot at the same time as the side dishes.
The turkey was practically still clucking, the giblets (which I have no idea what they are) wrapped safely in in a paperish baggie in his belly, as raw as the rest of the turkey. In the words of Homer Simpson, “Doh!” When you’ve been a caregiver, and a blonde as long as I have, I’ve learned to expect the unexpected.
Fifth, if this happens to you, eh – take a second to kick yourself and then get over it. Be proud that you made Thanksgiving memorable for your family and friends. Pour yourself another glass of wine, light the candles on the table, fill the water glasses, put all of the side dishes out and yell “DINNER!”
When I use to hear men or women say they left their marriage because “I’m just not happy,” or “This isn’t what I signed up for,” would make me cringe. I never did ask what they expected, or ask to read the contract they signed, but I probably should have. Then there are the couples that would divorce because “He doesn’t do anything around here!” or “I haven’t had sex with her in six months.” I had to bite my tongue because I wanted to point out that the garage was clean; the cars were all maintained; the lawn was mowed; and the household income is $80,000 more than they’d have if he was doing nothing.
I suppose if I was not dealt the cards that I have, I may be able to relate. Honestly, I hope not; but, I do know that being a caregiver to a spouse that is chronically ill takes stress, hardships, mental strength, problem solving, and the necessity to be creative to a whole new level. Many caregivers develop serious health issues, and often die before their ill spouse.
Caregivers have to watch their loved one decline daily, experience guilt when they enjoy themselves, have to quit or are fired from their job(s), suffer terrible depression and feelings of isolation, experience rejection and judgment from their family and friends, and have to accept they won’t have their golden years together. With all of that said, studies have shown that caregivers experience PTSD.
Yes, I said PTSD, Post Traumatic Stress Disorder. Yes, that is what you hear about in the news about our men and women returning from the Middle East. Shell shock, psychosis, and mental illness are terms used before “PTSD”. Studies about those constantly under the stress that caregivers endure are showing they too suffer from PTSD.
Barry Jacobs, a clinical psychologist and author of The Emotional Survival Guide for Caregivers (The Guilford Press, 2006), often sees caregivers who struggle with intrusive thoughts and memories months and even years after a loved one has died. “Many people find themselves unable to stop thinking about the suffering they witnessed, which is so powerfully seared into their brains that they cannot push it away,” Dr. Jacobs said.
Flashbacks are a symptom of post-traumatic stress disorder, along with feelings of numbness, anxiety, guilt, dread, depression, irritability, apathy, tension and more. Though one symptom or several do not prove that such a condition exists — that’s up to an expert to determine — these issues are a “very common problem for caregivers,” Dr. Jacobs said.
Research is being done because scans are showing that changes in the brain of a caregiver are the same as our military troops returning from combat. I don’t even begin to pretend I know what hell our soldiers go through, but I am sure I suffer from the syndrome.
In the words of a Ranger from Victoria, Texas….”Caregiving can most definitely be as trauma producing as a military deployment to a combat zone. I don’t state this lightly, but as a veteran of the US Army Special Forces and Rangers. Now my battle is one you know too well, the daily trying and often failing to do the best I can for my mother, after a decade long struggle with cancer and increasing chronic illness and frailty. This is a deployment that has no completion date.
On behalf of all caregivers who struggle without any of the recognition afforded our military warriors, I honor your extraordinary sacrifice, and your effort here to ease the burden of others. I would award you the highest medal available for valorous caregiver conduct, if only such a medal existed.”
As I paint a picture of how difficult it is to be a caregiver, our unselfish population is growing rapidly. Home health care is one of the fastest growing industries in the United States right now. Why stay when suffering the same disorders as men and women returning from war? If something is so difficult, and brings so much pain, why do spouses stay with their partner who is chronically ill or disabled?
In the words of C. Camille Lau, of Eagle River, AK, “After caring for five relatives in their last years – regrets? Yes. Wish I had known then what I know now? Yes. Could I have done so much better? Yes. But my advice to any struggling, devoted, weary caregiver and my advice to myself: Remember the seriously good differences you made, again and again, for the benefit, again and again, of your loved one.”
“I tell myself I did not design, I did not create this life and its cruel realities. I did what I could, I wish it was more, I wish it was better, it was my best.”
I cannot tell you how much my family and I appreciate you and your help. I don’t believe you’re paid enough, and I understand the challenges you face when entering so many different homes, and dealing with so many types of people and problems. With all of that said, it goes both ways because after almost ten years of having aides come into our home, the lack of respect and carelessness, we have endured, is exhausting, frustrating, and making an already difficult situation much worse.
* Don’t park right smack dab in the middle of the driveway; if your boyfriend is with you, waiting in the car, tell him not to play the music quite so loud and maybe lower the base; don’t ignore our request of where we’d like you to park.
* I don’t think it’s too much to ask to treat things as if they’re your own or according to the instructions; if you don’t know how to use something, just ask versus doing something like putting laundry detergent into the dryer; If you break something, just tell us or leave it on the counter, versus hiding it in the back of a cupboard; if you take something out, put it back when you are done; if you finish or empty something leave it on the counter or tell someone; and, when loading the dishwasher please put knives in with the sharp side down.
* If there is a tray of brownies on the counter, please don’t help yourself without asking. The seven you took were off of a tray that were for the teachers at our son’s school; eating a whole jar of pepperoncini and then asking me to buy more is not cool – in fact it makes you a pig; I’m flattered you like my cooking, but don’t tell me what meals you’d like me to make that week.
* We use to try to treat aides like family, but we had to stop when you took advantage of us. For example, when you stayed after your shift to have a glass of wine with us, proceeded to get drunk and then say “I’ll just sleep on your couch if I can’t drive home”; if my girlfriend and I are at the pool having a glass of wine, you are not welcome to take the bottle (while we’re sitting there), put it into Terry’s wheelchair bag, and then head into the house without saying a word. I believe you felt it was funny, it was not.
* Lessons – if a glade plug in is replaced upside down, the oil will run out and take the paint off of the wall; and, if the humidifier reservoir is not closed properly the five gallons of water will run out on the floor.
* Our lives have enough challenges, and we trust you in our home, so please don’t steal. My son’s wallet (just after Christmas) that had several hundred dollars and gift cards in it, and all of my camera equipment ($2,000+ worth) and memory cards (with priceless family pictures) have been major losses, and diminishes our trust in aides.
* You may not be working in a hospital, but HIPPA laws still apply to you. Sharing health, and or private information to your friends, boyfriend or whomever, is illegal. If you haven’t heard the expression “What you say will come back to bite you in the ass,” I’m here to let you know, it has.
* Technology is great, but deliberately connecting your phone to my nine year old son’s iPod so you can text with him, takes wrong to a whole new level; when you are in our home it is to help Terry, not visit or hang out with the other family members.
* I understand there is downtime, but that does not give you the okay to sit in bed (with Terry) to watch TV, or anything. Get a chair; hitting on Terry’s friends is out of line (especially when you’re engaged) and he has a girlfriend; when the patient is married, their spouse does not come second to you; if you lie to me (especially straight to my face) I will report your antics to the police, and hire an attorney to be sure I can prosecute when necessary.
* Most of the aides that have come here just love July, our service dog, and we appreciate the care he is given when Terry is not feeling well; but, to declare to our family (including my 10 year old) you get to have another patients lab “when ‘Sammy’ dies” (who also has MS) demonstrates a lack of compassion and common sense. It also shows your motive is more about what’s in it for you versus the person you’re there to care for.
At the same time we have had aides that are worth their weight in gold, and some that have been here that we miss terribly. When you’re in the home of someone that is sick, the family is dealing with a lot of pain and anxiety of their own. Terry is the one with the disability in our home, and he is my husband and my son’s dad. We are already dealing with major amounts of loss as we watch his multiple sclerosis progress. As an aide, helping us just get through the day and make life a little easier for us all is why we value your help especially when you care.
Ok, everybody. I’m excited. I am ready to begin my research related to caregivers of partners with Spinal Cord Injury. As many of you know, I am in grad school and my research is about family communication with disabled family members. (Wonder where I got that idea? LOL) I NEED at least 100 people to complete this anonymous 10 minute survey. SHARE WITH ANYONE AND EVERYONE who is in a romantic relationship with a paralyzed person. For those of you did not tell me yet, I am married to a C-5/C6 quad Thanks for your help:) I will share my overall findings with the group once I have analyzed them. My goal is to help all of us:) Ready….go!
Here’s the link:
Despite all of the tough stuff Terry and I have been through, there have been a lot of fun times too. When Terry was much more mobile we would be out and about town, or traveling the country, visiting friends, or off at a sporting event somewhere. With all of this fun came Terry’s sense of humor that put me in stitches many, many times. This particular story happened in the parking lot of Bill Gray’s, a favorite burger joint in Rochester, NY.
At the time we were driving a Ford Escort, four door sedan, with a clamshell on the roof. The term “clamshell” was coined by Terry as it looks like a hard case luggage carrier on the roof of the car. The difference is this one opens like a clam, and then brings the wheelchair down and sets it next to the driver’s seat so the driver can transfer from the car to the wheelchair. It’s really pretty cool to see, and wonderful for his independence.
Getting in and out of cars has never been a very graceful or stealth move for us, and on this cool evening we were getting our acts together to go into the restaurant. I was waiting for him and when he was finally rolling around to my side of the car he saw a bunch of people walking to their car(s). He then starts saying (loud enough for the others to hear) “Why don’t you ever help me? I just need a little help, and you won’t even give me that?”
At first I was stunned…then I saw the group of people almost stop dead in their tracks and just stared our direction for a minute. I could see they didn’t know if they should come over and help, or what. He knew he had their attention so again I hear, “Why don’t you ever help me?”
What was I to do but start to giggle? Until I heard “I don’t need a lot of help, and you still won’t help me!” My giggle then went to the laugh that happens in church that you try to stifle, but it’s next to impossible to hold it in. As I saw the people not knowing what to do, taking “should I? shouldn’t I?” steps toward Terry, I had to head for the building because I was going to burst out loud laughing any second. I knew by the looks that they were giving me that I didn’t dare start the “tears pouring out of my eyes” laugh, right there in front of them.
Needless to say, I think they’re still talking about that mean ole blonde that wouldn’t help the guy in the wheelchair at Bill Grays. “She just stood there and laughed!!”