When my boyfriend came out to his family, his father attacked him. That was nearly 20 years ago now.
For a long time he’d make attempts to get in contact with his siblings or his mother every couple years. They never went well. They were only willing to welcome him back into the family if he renounced his life and married a woman. He would end up having to block their phone numbers after their disappointment turned into threats and condemnation.
A few years ago, he decided he wasn’t going to contact them any more. We’d gotten married, bought a house, adopted a dog, and surrounded ourselves with a great group of friends. We had our chosen family and that was enough.
Last year he started having vague symptoms that something wasn’t right. He went to the doctor a few times before things were taken seriously. We knew something was really wrong, but weren’t surprised that his generic complaints weren’t getting him access to the tests we thought he needed.
Finally we got a diagnosis. It wasn’t a “good” one.
We thought we’d put the family issue behind us. But now we’re back to mulling it over.
Do we owe them a last chance to make amends? Does he owe himself one last opportunity to have his family’s support? Or is it just inviting trouble into our lives?
While we’re legally married, we’ve heard enough horror stories of long-estranged family members suing spouses for assets or fighting to take back POA. The potential for danger seems high.
But I know he’s always held out hope that one day down the line they would learn to accept him. There is no “one day.” It’s now or never.
Caregiving is a rewarding activity, but it can also be very emotionally and physically draining. Compassion fatigue among caregivers is common, which can lead to burnout, depression, and exhaustion. Not only are these symptoms draining on the caregiver, but over time, they can lead to a decrease in quality of care.
Luckily, today we have boundless technology to assist in both trivial and specialized tasks. Below are some ways that technology can help ease the burden on caregivers and improve quality of care for seniors.
Technology and Senior Care
Technology is mostly associated with and marketed toward young people, mostly because they are the ones who will spend the most money on new technologies throughout their lives. But technological advances can improve livelihoods of people of all ages, especially people with dementia or limited mobility. Caregivers can utilize technologies built specifically for elder care, like remote monitoring systems and wearables that monitor blood pressure and allow seniors to call for help in case of a fall. These devices not only offer concrete benefits, but they also provide a sense of security, so the caregiver knows that there are proper safety measures in place and that they’ll be alerted immediately in the case of an emergency.
Inside the home
Accidents inside the home are not uncommon for seniors. For many, home is where they spend most of their time. When we are in our homes, we tend to be relaxed, and not as careful as we might need to be. This can lead to carelessness and injury. This is why caregivers should look into home improvements like home automation that makes sure devices are off and the house is locked when no one is there. Safety devices like hearing impaired smoke alarms and other home monitoring systems are also recommended. These technologies can help prevent major incidents, while falls can be prevented with the installation of handrails and other supportive structures throughout the home.
Many caregivers find that they cannot take care of their charge alone while still caring for themselves. This may lead to looking for assisted living situations or hiring medical assistance. Unfortunately, because social services are perpetually underfunded, the people in these positions are often at the same risk of burnout as family caregivers. This leads to many seniors being emotionally harmed by neglect or abuse.
But luckily, the Internet provides caregivers the opportunity to do extensive research on service providers. It also provides methods to report abuse and neglect, preventing others from experiencing the same. Phones and computers make it easy to record infractions and hold people accountable. There are also vast online communities giving caregivers ideas and resources for providing quality care, both with and without assistance.
It’s common for caregiving to wear people out. Technology can help you implement safety measures and automate certain tasks. How have you used technology in caregiving? Share your experience in the comments!
Jeriann Watkins Ireland
Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!
When an elderly parent becomes unwell or unable to maintain full independence, the child is often the one to step in to provide his/her parent with the loving care they need. Caregiving for a parent is always difficult, but when there are several siblings involved, everything becomes that much more complicated.
There are many different ways that adult children react to their parent becoming dependant on the help of others, and when there is more than one child, these individualized reactions can cause strife and bitter feelings, unless dealt with correctly.
The following are some common ways that this situation can (and does) play out:
1. Siblings Who Refuse to Help
When the child of an aging parent has other siblings around, he/she may be tempted to take the easy way out and allow the burden to fall on someone else’s shoulders. This can obviously cause a lot of resentment among the siblings who end up with all or most of the responsibilities.
One such example is Gloria P.*, who shoulders the entire burden of caring for her aging father.
As Gloria shared, “The responsibilities of caring for my dad, who has dementia, are daunting – and my brothers never visit or help in any way. I took in his dog, I pay his bills, I drive him places – but they do nothing, and honestly, I resent that.”
Carol Bradley Bursack1 recommends several ways to deal with siblings who refuse to take on their fair share of responsibilities:
- Ask for help. Be direct and tell them exactly what you need or what they might do to ease your burden.
- Have a care plan. A care plan can help you organize tasks and responsibilities to make it easier for them to get involved. Also consider keeping an online medical & health record so that you’re always on the same page.
- Let go of expectations. By learning to let go of your expectations and hurt and allowing yourself the liberty to find help elsewhere without feelings of resentment, you are ensuring your own peace of mind.
2. Siblings Who Forcefully Take Control
Alternatively, there may be several children who would like to help – but another sibling refuses their help, choosing to control the situation and have the last word in their parents’ care.
“The opposite problem also exists, when one sibling takes on the entire burden, believing he/she must do everything and shutting out the other siblings. In my family, our oldest sister took Mom on as her personal project. We’re not allowed to have an opinion. Yes, she’s good with financial stuff and Medicare – but that doesn’t mean we don’t want to be involved in our mother’s care! She just won’t let us do anything for our mother, despite our protests,” says Diane S.
3. Multiple Siblings with Conflicting Interests
Even when all or most of the children pitch in and/or get involved in their parents’ care, there can be a lot of conflict caused by different opinions, or, according to Alexis Abramson, gerontologist and author of “The Caregiver’s Survival Handbook,” even by pre-existing tension between siblings:
“When siblings squabble over who will care for Mom or Dad or refuse to help one another with caregiving tasks, the problem often isn’t about caregiving itself, but conflicts and power struggles that may have existed since childhood.” – Alexis Abramson
Many caregivers and senior care managers recommend circumventing such issues by having a neutral third party involved as a mediator.
If the main issue is the differences of opinions, one great recommendation is given by Heidi T., an experienced family caregiver:
“Your first consideration should always be to fill the wishes of the parent wherever possible. If not, try to make the kinds of decisions the parent would have made in the past. This way, instead of getting your personal feelings involved and doing what’s best for yourself, you know you are doing the best you can for your parent.”
Ellie L. from New Jersey is one of seven siblings and she often struggles with keeping the peace between her siblings. The following is her take on sharing the caregiving burden, as well as the mindset that helps her ensure that her mother gets the best care possible without any hard feelings among her siblings.
“One of the hardest things about having an elderly mother,” Ellie begins, “is juggling the many opinions and keeping peace. It’s really true what they say – one mother can take care of seven children, but seven children can’t take care of one mother.
“The first thing I try to remember,” she continues, “is that if other family members give opinions or try to be ‘helpful’ they are doing it from love.
“Everyone makes mistakes; no one does a perfect job taking care of others. If you don’t like the way your sibling is handling it – realize that she’s doing the best she can.
“In my own family situation, I have no reason to suspect abuse. Of course, if one does suspect some kind of abuse, one has to take action!! If not, you have to trust the caregiver to make the best decisions he/she can. (It doesn’t help to mix in for everything… too many cooks spoil the broth!)
“Sometimes, my siblings make decisions that don’t make sense or that were wrong – but once it happened, it’s over and there’s nothing I can do about it. Instead of causing family discord because of the past, I choose to accept it and move on.
“If I feel strongly that something needs to be done a certain way, while my sister feels the opposite, I need to remember that two people can have opposite opinions and neither one is wrong. For example, I feel that our Mom needs evaluation for depression, and my sister thinks I’m just imagining things. In this case (and in many other cases like this one), there is no danger to giving in and waiting some time before re-evaluating her condition. It gets tricky if you think that there is danger, but I find that it’s pretty rare that it gets to that. After all, unless you’re dealing with unreasonable people, your siblings all want what’s best for their mom.
“Years ago, when my sister’s mother-in-law was unwell, she had one sister who was mostly involved in the caregiving. She once complained, ‘They live out of town and they like to have opinions. I’m here, taking care of everything, and my siblings in another town have an opinion on how I do it! You know, if you really want to have opinions, move here and do it yourself.’
“When I heard that,” Ellie concludes, “I made up my mind that if my sisters are going to do things I’m not able to take on myself, I have no right to have an opinion.”
Jessica C., who helps care for both of her parents, agrees with this: “My parents live with my sister. We have three other siblings who live around the country. When I spent a few months at my sister’s home (which is in another state), I gained a new appreciation for what she does for my parents, as well as how difficult caring for them can be. My other siblings, who didn’t share this appreciation, tended to bark out orders. Because of my experience, I have learned to allow my sister to make the decisions, and I encourage my other siblings to do the same. The most important thing is the care and wellbeing of our parents.”
Top 5 Tips for Shared Caregiving
When sharing the caregiving burden with your siblings, Ellie recommends keeping the following pointers in mind:
- People make mistakes – and sometimes what you believe is a mistake may actually not be a mistake at all.
- Two opposite opinions can both be right.
- Appreciate what they’re doing instead of thinking about how you could do it better.
- You all share love for your parent and the fact that you have different opinions is okay.
- Always support each other and respect each other’s opinions. This is especially important because, similar to parents who undermine each other and thus undermine their child’s growth, siblings who don’t support each other in their parent’s end-of-life journey end up undermining their care – and this is true even when you’re in the right.
*Some names have been changed to protect the privacy of the individuals involved.
1 See Top 3 Excuses from Siblings Who Don’t Help with Caregiving
Featured image: Joseph Sohm / Shutterstock.com
About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.
My parents are too young to be facing old age.
They’ve reached that point of enjoying an empty nest. My brother and I are standing on our own feet, settled into lives of our own. Rather than have to parent (active verb) they can just be parents.
My mom and I go shopping and chat several times a day. She comes out with my girlfriends and I. My dad and I go for hikes together. He’s been helping me with the fixing up part of owning my fixer-upper.
I guess it did feel a little too much like being in a TV family. Or some Instagram lifestyle account. But I just thought we were all living our lives, doing our best, and enjoying a bit of smooth sailing after lots of hard work.
Then my mom was diagnosed with MS. Only a few months later my dad was told he has Parkinson’s.
Suddenly the retirement they were expecting evaporated. They’ll probably still be well enough to finish up their last few working years…and then who knows what will happen to them.
They can’t stay in their own former fixer-upper, the one they spent their whole adult lives tailoring to their tastes. The one that echoes with our memories. They’ll have to find a new place that’s handicap accessible — how much will that cost? Sure, they’ll probably make a nice return when they sell their beloved house. But the real estate boom that will get them a good sale price will also push up the purchase price of a new home.
None of the houses — even new construction — are accessible. Their only choice would be to build custom, make huge changes, or move into a retirement home. All of those are big bucks.
The life I was imagining has vanished, too. I was looking forward to having my parents around to help me when I finally have kids of my own. Now I’ll be raising my own kids just as my parents need more and more of my help. Can I do both? Should I have a baby sooner so they can enjoy having a grandchild before they get too sick? Should I not have kids at all?
I’m scared about how this will change my relationship with my brother. We’ve always been close, but he’s not really someone I’d rely on. Certainly not for practical matters like this. I’m so excited he’s finally living on his own and not mooching off of our parents. I’m worried about how he’ll handle all of this. Will it all fall on me? Will it pit us against each other? I don’t want his relaxed, doofy personality to be something I end up resenting.
My parents have always been so proud and self-sufficient. They don’t feel stubborn to me, maybe just because I’m so similar to them. I know they don’t want to be taken care of. But someone will have to do it. What happens when they need help with personal care, like bathing or using the toilet? I can’t imagine either of them allowing it.
None of my friends can imagine my concerns. They’re worried about getting promoted at work and finding a serious boyfriend. Most of them have grandparents who are still with us and they’re worried about them, not their parents.
I know I’m not the only one facing these sorts of problems, but sometimes it feels like it.
Judith S. Lane
I’ve always felt like an outsider.
Growing up in the suburbs I always stuck out. I didn’t fit in. I didn’t belong there. My parents always described me as the black sheep. When I was little, they tried to get me to play nice, wear dresses, do the things little girls are supposed to do. To their credit, they gave up pretty early on. They’ve always been as accepting as they’re capable of being. In high school when my friends were fighting with their parents, I was always close with mine.
There was no surprise when I announced I was moving to Brooklyn. I didn’t spend a lot of time talking about leaving the suburban conformity for the city, but I think we all assumed it was going to happen. It felt inevitable.
They insisted in helping me move up. They took me shopping for all the stuff I’d need for my first (room in an) apartment. When they come up to visit they don’t bat an eye at how weird my friends are. I’d finally found my place and they didn’t understand it, but they saw how happy I was.
When my dad was diagnosed with cancer, I didn’t really know what that meant. People talk about “cancer” as if it’s one thing. It’s really not. There are hundreds of types of cancers and it seems like some of them have nothing in common.
His type of Lymphoma isn’t necessarily terminal, but it’s serious.
I want to be there for him while he’s going through treatment, but that means going home to the suburban life I hated. Leaving my weird job, my weird friends, and my life behind.
I feel like I have to choose between my family or myself.
Featured image: Christian Mueller / Shutterstock.com
When we said “in sickness and in health” we envisioned supporting each other through old age.
Even 64 seems pretty young these days. The world has changed since the Beatles were at the top of the charts. When did we expect to start feeling old? At 70-something? But then there’s that 96-year-old yoga instructor.
I didn’t imagine the “in sickness” would happen in our 20s.
We felt so responsible. We were checking off all the boxes for becoming adults. We unpacked all the housewares we got for our wedding into our new house and started cooking healthy meals, going out running together on the weekends, and opened up retirement accounts. We didn’t want our careers to be first, but we also wanted to climb the ladder. We talked about who would take how much leave once we had a baby, how we’d manage childcare and housework. We were planners, planning our life together.
And then one day he isn’t feeling well. Really not feeling well. So I took him to the ER, his head in my lap in the waiting room, figuring they’d send us home with some antibiotics. Instead, he was in a coma by the end of the day.
Too much was happening at once for me to even worry about anything. I was in shock.
He came out of the coma, thankfully, but not really. I guess no one comes out of a coma as if nothing had happened; they’re never the same.
He’s never going to be able to go back to the job he had, although it seems hopeful he’ll be able to go back to work eventually. It’s hard to understand that he has brain damage, since there was no accident, nothing happened. He seems like his old self, except when he doesn’t. It seems like he can manage something on his own, except then he can’t.
I don’t want to baby him and keep him from progressing and recovering. But it feels cruel to watch him struggle, flounder on his own.
It feels cruel that this has happened to us.
At night I ask myself how long I will have to do this. How long I can do this. The doctors say he’ll probably be fine on his own, be able to get some sort of job, but there’s no guarantee. Right now he is well enough to stay home alone while I’m back to work part time, except I never quite know what I’ll come home to. So far it’s just been…confusing…to see what trouble he’s gotten into. But I worry all day that he’ll hurt himself or burn the house down.
What if he’s like this forever? How will I take care of us both?
I try so hard to not be angry, to not lose patience with him. Because I’m never mad at him. He didn’t do this. I’m just angry. Angry that this is our life now, that this happened to us. But I know being angry won’t make things any easier.
Mental health issues can strike at anytime, without warning and with little regard for your responsibilities. I knew my husband suffered from panic disorder when I married him. However, it wasn’t until a particularly stressful period at work that it became apparent that I was yet to see the worst of his condition.
By this point, we had a son, and it was clear he couldn’t understand what was happening to his daddy. Fortunately, children are smarter than we give them credit and can quickly adapt to take charge of situations, as long as they feel comfortable.
I was hesitant about explaining mental health to my son, but, since we had the conversation, he’s my biggest helper and an incredible support to his father.
If you’re struggling to broach this difficult topic, here are a few pointers:
Don’t Baby Them
Children see a lot more than we realize. Attempting to keep your kids in the dark if they have a mentally ill family member is a terrible tactic. Not only will they still see the difficulties, but they also won’t understand them, and this will quickly turn to fear.
Being as honest as you can with your child prevents them from feeling isolated. Particularly if the sufferer is a primary care figure; it’s actually easier to cause long-term trauma by shutting them out of the situation than by exposing them to it. It’s easy to feel like they’re too young to experience these sorts of things. However, knowledge is power – even when you’re little – and understanding strange behavior will allow them to still feel safe and in control.
However, there is a slight caveat to point one. Mental illness is complex, and most children’s brains aren’t developed enough to understand the intricacies of brain function. These means it’s important to find a relatable metaphor and description.
A personal favorite in our family is the ‘Hulk’ metaphor. As panic can quickly turn into rage and mental illness sufferers can lose their cool quickly, having a way to explain this to our son without him feeling at fault quickly became essential. The Incredible Hulk is a superhero who turns into a raging monster when he’s angry. This comparison is not only relatable and understandable, but it also comes from the child’s world. Using metaphors based on cartoons and comics can be an incredibly useful tool to help them see what having a mental illness means.
If you’re in this situation, it’s common to worry about information from other sources. While you can control how you address things with you child, there are many out here offering less-than-helpful information. However, here is another area where you child might surprise you.
Especially if they’re older, allowing their own research will let them feel like they can take control and will significantly increase confidence. Just to be sure to engage in discussions about their findings and encourage open dialogue. If you’re worried about internet safety, you can also install parental controls or a proxy service to protect them from online criminals.
Ask Their Feelings
The most powerful dialogue about mental health goes two ways. It doesn’t matter how well you word your explanation, if you aren’t receptive to your child’s thoughts and feelings, they can quickly end up feeling confused or isolated.
There are a few important check-in points for children:
- When you first offer an explanation, ask how they feel about what you’ve said.
- After particularly bad and potentially frightening attacks, talk about their emotions and quell their feels
- If possible, get the sufferer to speak with them so that they can understand you can still be a ‘normal’ person and have mental illness.
- The media can offer negative views of mental health patients. If you child is exposed to this, sit him or her down and discuss how they relate it to the situation at home.
While these points are a great place to start, in reality, it will always help to talk to your child about their feelings towards mental health. Having this open conversation means you can keep tabs on their responses. Plus, they will feel more comfortable to raise their worries and fears in the future.
Give Them Responsibility
Anyone who cares for a mental illness sufferer will know how quickly you can feel powerless. If you sincerely love someone, it’s difficult to see him or her in emotional distress. This lack of control can be one of the hardest elements to being a caregiver.
Although often overlooked, this fact is still true for the children and young relations of the mentally ill. They want to do what they can to help with the situation, so allowing them a small level of responsibility is key. Show them the medication schedule, and ask them to help remind you, or identify a small job they can do if there’s a particularly severe episode. This could be as simple as getting some pillows or a blanket or making a cup of water. Not only will it help their confidence with the situation, but it will also stop them from panicking if things get tricky.
Many put off addressing mental health issues with their children because they feel it will be too difficult. However, this is often not the case. Young people are incredibly resilient and will continually surprise you in their empathy to mental health patients. If you’ve been delaying this talk, follow these tips and ensure your child has a clear picture of their role in the situation.
Caroline Black is a writer and blogger who has become a primary caregiver for her sister. She writes about health, as well as sharing her experiences and insight with mental health and how it affects those around them.
Moms of special needs kids come in all shapes, sizes and types. What kind of (super) mom are you?
Rabbi Rebecca Einstein Schorr blogs at This Messy Life.
This former career-driven mother of three became a reluctant stay-at-home-mom when her autistic son and his two adorable sidekicks needed more from her. Formerly known for her popular blog, Frume Sarah’s World, Rebecca Einstein Schorr has embraced the challenge of stepping off the rabbinic pulpit and into the kitchen – some say for the very first time. The transformation from a religious community leader to what her kids call a “house-mother” has been nothing short of life-altering.
Caring for seniors requires knowledge, skills, and stress resistance. Leaving our loved ones in the hand of others requires trust. It is my honor to talk to Jacqueline Thomas, a professional caring staff who uses her old phones to build a team with the families of the people she cares for.
Her stories have testified that creating and sharing a video connection is an open door that fosters trust between caregivers, patients, and their family members. Let’s take out our old phones lying in the drawers, bring them back to work, and make caregiving a bit easier.
I have been working as a caregiver in nursing homes for years. This job is rewarding because I can care and provide comfort for people who can’t be taken care of at home anymore. However, it comes with many different challenges.
Some of my patients (termed as “consumers” in our service) are non-verbal. They have problems expressing their wishes as well as problems. Even though I am supposed to be available at all times during my shift, I do sometimes have to go to the kitchen to prepare for food, for example. I have learnt that anything can happen in a second in my job, so I need all the help I can get. Alfred is my recent discovery. It is an app that turns spare phones or tablets into cameras.
Just sign in with Gmail, and I can watch the patient/consumer or receive Motion Detection notifications even when I am somewhere else in the house.
I set a Camera Phone up in front of a Teddy bear by a non-verbal patient’s head so that I can always keep an eye on him. Lucky for us I did. When I was heating food up in the the kitchen the other day, I saw on my phone screen that he had a seizure. I quickly rushed back to his side and handled the situation. It was a close call!
It isn’t necessarily easier to take care of patients/consumers who are able to speak. Some of them refuse to communicate, so I have to observe them closely. Patients/consumers with dementia could forget where they put things and whether they ate. If they complain to their family, who in turn complain to the nursing home, it could easily cost me my job or even license.
While I installed Alfred to ensure my job security, what I have found is that it fosters trust between me and the patient’s family. Rather than waiting for them to take the initiative to surveil me, I have added them to Alfred’s Trust Circle so that they can check on the patient/consumer as well as my interactions with the patient/consumer. It makes us a team.
My patients/consumers might not get better, but I am proud to provide them with dignity and comfort. It’s great to do this with a little help from Alfred
is the founder of Alfred
, an app that allows anyone with an old cell phone to use it as a motion detected home care camera.
Caring for a loved one who has special needs or has become ill or infirm is a big job. Not only is it physically demanding, it takes a toll emotionally, as well. It can be difficult to watch someone you love suffer through painful issues; yet for many caregivers, knowing that they can provide some measure of relief by helping them with daily activities often makes the job easier.
If you’ve cared for a loved one and had to take time off from the workforce to do so, you might be thinking about finding employment again. Now that you have experience with caring for someone with special needs or an illness, there are many paths you can take that involve helping someone.
There are some steps you’ll need to take first, however. Here are the best tips on how to get started.
Figure out your goals
It takes a special kind of person to take care of someone who cannot take care of themselves. It’s a very demanding job, and it can be difficult to perform physically if you don’t have help. Ask yourself what your goals are and think about how your daily duties might affect you. Patience, kindness, and emotional strength are all required attributes for a caregiver to have.
Do some research
Before making any decisions, do some research on the field you want to enter. Find out what it takes to become a licensed caregiver in your state and decide what area you want to focus on. If you want to provide medical care for someone, you might need a nursing degree. If you’re thinking about taking on a younger patient, you may want to consider taking some child psychology classes. If you want to provide general home care, like cooking, housekeeping and errand-running for someone who still has some independence, it’s important to know what to charge so you’ll be competitive in the market but not sell yourself short.
Talk to someone with experience
You may have experience taking care of a loved one, but providing care to someone you don’t know is a very different job. Learning their likes and dislikes, their habits and needs… it can all be a little overwhelming at first, especially if you are hired by a family who has specific guidelines for their loved one’s care. Talk to someone who has experience in the professional caregiving field and get some feedback. Don’t be afraid to ask questions and find out what they like and don’t like about their job. Again, you have options in how you can help care for someone, so finding out what this kind of job really involves firsthand may help you choose the right fit for you.
Make some contacts
Once you’re fully licensed to become a caregiver, it’s important to start making contacts in the healthcare world. Consult your local department of health services to find out if there is a registry system you can be added to that would allow clients to find you. You can also contact health insurance companies and ask about being added to their list of care providers.
One good thing about pursuing a career in care is that you have plenty of experience under your belt now, even if not formal experience. Surely this will help you as you pursue caregiving in a formal manner. It will certainly help you in any job interview scenarios.
By Jim Vogel
Jim and his wife, Caroline, built ElderAction.org after becoming caregivers for their aging parents. He enjoys sharing valuable information with seniors and their caregivers.
Photo via Pixabay by Maxlkt
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 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.
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…)
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.
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
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…)
Some of us care for a mom who isn’t able to participate in a big celebration, but other seniors are able to get out and active with some accommodations and planning. Family caregivers looking after their moms can make Mother’s Day extra special. After all, these women only deserve the best in life, considering that most of them experience both financial and health issues during the twilight years. Here are a few suggestions:
To be able to wander and experience the many joys of life is a treat that’ll delight both caregivers and their mothers. Travel is a wonderful dream to achieve, especially during the retirement years. Of course, prioritizing a senior’s safety during a trip should always be practiced.
2) Learning Something New
The golden years offer a lot of opportunities for mother’s to experience. Caregivers can celebrate Mother’s Day in a productive and enjoyable manner by introducing something different from the usual. From crafts workshops to learning a new skill (such as being able to manage a blog, driving, or enrolling in a short course), the opportunity to continue learning during the twilight years will both be a fun pursuit of new knowledge and a way to help stimulate a senior’s mental health.
3) Earn Money
Another way to observe Mother’s Day is for a caregiver to help his or her mother earn some income. This can be done by checking local listings for senior employment opportunities and presenting the options to the mother. Another is through various ways to earn online, such as ads on a blog, online writing, or being a virtual assistant. Introducing the idea of how to make money even during retirement for mothers can be a great way to uplift them.
4) Spending Time with Each Other
More than anything else, seeing Mother’s Day as an event to truly spend and make the most out of the time with mom is a great mindset and focus for a caregiver to have. Perhaps this is what matters the most: considering the blessing of being able to care for a mother over the many challenges a caregiving role has.
Do you have other suggestions to include? Let us know below!
By Leandro Mueller
As the Online Content Director of FreeMedSuppQuotes.com, Leandro Mueller aims to push for awareness and promotion of the many benefits of Medigap insurance plans in the market. He hopes that his work will help boomers and retirement industry experts alike in their lives.
The emotional and monetary consequences of elder financial abuse take a toll on caregivers as well as seniors directly victimized, Allianz Life said Monday in releasing findings of a new study. A vast majority of both active and prospective caregivers reported that they had incurred costs when their elder was financially abused, an average of $36,000,… (more…)
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.
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.
No matter how great your physician is, there is one question he or she is unlikely to answer: “How much will that cost?” It is not really doctors’ fault. Medical schools and residency training programs have traditionally shied away from teaching costs. For the most part, costs remain hidden even from many practicing physicians. Some would… (more…)
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
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.
What keeps me going, and it is the hardest task I have ever had, is knowing that true love is rare. Deb and I met in 1984 when she was 28 and I was 33. We married a few months later. We had both had prior marriages and were blending families of 2 kids each. We knew it would be rough but we made a wonderful life for our kids and each other. She was diagnosed in 2004, in a wheelchair since 2010, and is now approaching what would be considered end stage MS. Her disease has never had relapses. She has what is clinically called “primary progressive” MS. My own physical ability to care for her is getting strained and I worry if I can finish. However, the emotional strain is by far more difficult. The key to going forward is not looking too far in the future. That is overwhelming.
I am proud that I have been a good and faithful husband and am honoring that vow “in sickness and in health”. I have had friends and family who have been supportive and encouraging. When I was young I knew a woman with MS whose husband had left her. She was a wonderful woman and I felt like that guy was such a creep. Looking back now what I feel about him is that he may have missed the best years of their marriage. Sure the sex would have gone but he would have had moments of love and intimacy that I can now say are some of the most beautiful moments in my life.
Staying active fortunately doesn’t have to mean hitting the gym every day. Activities for seniors, from volunteering to swimming, moderate hiking, even simply getting out of the house to grab lunch with a friend can have immediate health benefits. Caregivers looking to optimize their loved one’s overall physical and mental health will be thrilled by these tangible benefits of routine activity:
Physical Wellness: In addition to promoting a strong immune and digestive system, regular exercise in old age can help fight illnesses like heart disease, obesity, high blood pressure, dementia, Alzheimer’s, and colon cancer to name a few. Is the person your care for experiencing minor back or knee pain? Staying active with low-impact physical fitness helps stretch your spine, reduce muscle inflammation and improve circulation, which in turn, can alleviate aches and pains. The benefits of physical activity far outweigh the risks for older people, but if you are concerned about injury, consult your doctor and encourage your loved one to start with gentler physical activities like daily walks, yoga, tai chi, or water aerobics.
Positive Attitude: Both exercise and socializing with friends triggers an endorphin release in the brain, promoting self-confidence and overall happiness as well as reducing feelings of sadness and anxiety. Volunteering in the community is a great way for seniors to stay active and is also proven to help people feel more socially connected, combatting feelings of loneliness and isolation that can often accompany old age. If the person you care for is feeling depressed, angry or generally grumpy, striking up a routine of some type of activity daily, like a 20-minute walk, or a stretching session to a playlist of their favorite songs, both gives them something to look forward to as well as promotes endorphin production.
Mental Clarity: For seniors, “staying active” doesn’t just refer to the body, but the brain too. Routine activities should include those which stimulate positive brain function, thus enhancing critical thinking and preventing cognitive decline. Solving puzzles or playing thinking games regularly, like Sudoku, Chess or Scrabble, encourages your loved one to multi-task, and use creativity, problem-solving skills and memory. Stave off dementia, memory loss, and Alzheimer’s with physical exercise too, which boosts blood flow to the brain and has been shown to promote cell growth.
Better Sleep: Getting out, exercising regularly, and staying active can help your loved one fall asleep faster, get a better night’s sleep, and wake up more rested and alert. Better sleep then cyclically feeds into a desire to be more active as well as promotes better brain function. As a caregiver, are you concerned about your loved one falling? Exercise and healthy amounts of sleep can boost your loved one’s mobility, coordination, and balance which means reducing their risk of falling. A win-win!
Sense of Security: When it comes to routine activity and providing a sense of structure and security for your loved one, “routine” is the key word. For caregivers and those they care for, following a daily set schedule that involves some type of physical activity is paramount. Taking meds at the same time each day, exercising and eating meals around the same time each day, and waking up and going to bed around the same time each day help people, especially the elderly, feel less stressed and sleep better.
For caregivers, the resources to help your elderly parent, grandparent or friend whom you care for aren’t always in abundance. Daily activities might require transportation you can’t provide, or time you simply don’t have because of a job or other obligations. Prioritizing regular exercise and activity that so greatly benefits senior citizens is easier with the help of other family members or friends who are willing to pitch in.
Consider organizing a care calendar where your loved one’s support network can sign up to transport them to the local senior center for tai chi class, to take them out for a walk, or to bring lunch over and do puzzles together. Online coordination tools like CaringBridge and SignUp.com provide free online signups and calendars for you to organize help. And local agencies and caregiver networks may offer free transportation or daytime activities for your elderly loved one as well. Do your research and don’t forget, keeping your favorite senior active will effectively make life better for them and you!
NEW PROVIDENCE — As Geri Payawal Shepard walked with her son to Mount Sinai’s cancer clinic in Manhattan, families with young kids buzzed around her. She stared at them for a minute, trying to figure out why so many people were outside. Then, it dawned on her: For most families — those whose lives hadn’t been… (more…)
What’s your life really like? So many caregivers are out there feeling like no one understands what they’re going through…but we suspect quite a few of you are going through similar things.
February 3rd marked a year since my husband passed away.
Life has been very different – I don’t have the daily battle on my hands with so many things, tube feeding via peg tube, bathroom messes, driving him to his appointments (he could no longer drive), arguments, dressing, giving pills, being bashed behind my back. Being with him in the hospital, doctor’s appts. (where I could not tell the truth because I had to go home and be with him). Therapists were under the impression that he was doing better than he was – he could bullshit with the best of them. His walk and his talk was fairly good – but his perception of things, his abilities to do things was never the same (stroke in 2013 at 64 yrs old).
What’s keeping you up at night?
While caregiving I had to be a light sleeper just in case he needed to use the bathroom instead of the urinal.
He would sleep walk quite often – he would rearrange things in whatever room he ended up in. Almost burned up the house heating up his barley bags in the microwave – had them heating up for too long – he could not use a heating pad because he would burn himself and had previously.
Or in case anything else came up overnight.
What are you really proud of right now?
How much I learned about nursing a patient, being a caregiver. Even showed nurses in the hospital how to handle hooking him up to the feeding tube.
I learned to read his body – knew when he was coming down with pneumonia or that his energy level was down – I perceived a lot about him from being with him every day.
I was mostly responsible for keeping him alive for the several years of his life.
Hanging in there until the end – I even considered divorce because of how mean and nasty he was to me – at least while receiving acute care at two different care facilities (due to silent aspiration pneumonia numerous times), he treated staff, his daughter, and best buddy the way he was treating me – amazingly, they asked why he was doing that, never considering that was the treatment I always got at home with him, he was now sharing his meanness with everyone else!
Knowing I could not change him – he began drinking whiskey (he was a former alcoholic) to calm him from the ‘familiar’ voices he was hearing.
I discovered that I could work from home – no matter what interruptions I experienced, I could stay focused and get my work done via remote connection to the office.
What keeps you going when you feel like giving up?
When considering a divorce I had a discussion with my Pastor – he understood what I was going through on the caregiving – he had cared for his Mother during her decline. I don’t know if it was as one on one as mine was, but he understood the mean and nasty aspects of the one being cared for.
My Pastor asked me if I still loved him – and I had to admit that I did. That’s why I continued to hang in there.
And I am a person who has Hope – a lot of hope. Which also involves Trust in God, Jesus, and the Holy Spirit.
Also, being able to talk to friends who understood what I was going through. Being able to share, being understood. Caregiver websites have helped through the years also.
Catherine L. Ford-Barbiero
My son was born two years ago. Nothing pains me more than knowing he will never know my mom for the person she was my entire life. That someday she may not know who he is at all, when one of her biggest dreams was for a grandchild, is a terrifying and unsettling thought. Yet it also brings me joy to know how much his presence on this earth has helped her. She always says that having him in her life makes what she is going through so much easier, and that she hopes everyone suffering like she is has a baby in their life to love.
Lost, anxious, depressed, afraid, angry, confused, and overwhelmed. These are just a few feelings that I am sure my mother faces on a daily basis. It saddens and enrages me that this is happening to her at the young age of 65. Accompanying the huge range of emotions she is dealing with are the emotions of her loved ones hoping to provide her with the best care possible through this process. It is hard on us all.
At this point, you are probably wondering what exactly it is that she is going through. Unfortunately, our family is wondering the same thing. For the past few years we have been slowly watching my mother’s decline. It has been scary, painful, and frustrating to say the least. It has already been a long journey for my mother, father, brother, and I, and we are still looking for answers and an accurate diagnosis. We don’t yet know if it is psychological or neurological, but there is no doubt that something in her brain is not functioning the way it is supposed to. Words like “dementia” and “Alzheimer’s” have certainly been thrown around.
It started out with some garbled speech. She couldn’t find the words she was looking for and stumbled over words that she did know. We then brought her to our primary care physician to rule out a stroke. After some testing, they could find no reason for her symptoms. This brought on a slew of appointments with neurologists, psychologists, and psychiatrists over the last few years. Tons of tests were done including CAT scans, PET scans, a spinal tap, and more. We are currently awaiting results of some more specific frontal lobe testing. She has also tried many different medications to no avail, and we are still scrambling to find the right fit.
During this time she has had periods of stagnancy, where she would go without any decline whatsoever. This gave us hope, because we were able to get acclimated to her – and therefore our – “new normal.” There have also been periods of rapid decline, where she is suddenly unable to do multiple things that she had just been doing daily.
Currently she has trouble with her memory, reading and writing, and performing daily tasks that the average person can do without much conscious thought involved at all. What’s troubling is that she is either aware that she is forgetting or having trouble, which makes her sad and frustrated, or she believes she can do something without help, which can end up with her feeling embarrassed or even getting angry with us.
My mom was always the woman who took care of all the children in the neighborhood. Other parents would come to her for advice, and whenever a child needed help in school, got hurt playing outside, or just needed someone to talk to, she was the first person they came to. Throughout her lifetime she also helped many adults by offering them a place to stay or giving up her time and resources to make sure they were taken care of. She lived a selfless life. It isn’t fair what she is going through.
Still without a sure diagnosis, we don’t know whether there will be treatment or a cure for what she is dealing with, or if she will continue to decline until the time she is no longer with us. As difficult as it may be to lack the answers we so desperately crave, the uncertainty leaves room for hope. It can be easy for me to get caught up in the stress or self pity that accompanies caring for a sick parent. I feel that we should have had much more time before anything like this happened. I mainly hope that I can be half the woman she raised me by example to be, and that I can support and love her no matter where this journey takes us next.
By: Rachael Mariani
My name is Rachael Mariani. I am a 24 year old stay at home mom and the author/owner of Uninvincible Mom, a motherhood and family lifestyle blog that is set to launch soon! My goal is to empower others in their imperfections, and to promote quality family time with an emphasis on the children.