Please share your caregiving experiences and perspectives in the comments section below! Please think about the following to help you along! Most importantly, stay mindful that it’s impossible to do it wrong! If sharing isn’t feeling helpful to yourself, chances are significant that you’re helping someone else to just keep going! You might help them remember who they are. You might help them save their own life or that of their loved one.
Are or were you a caregiver, a patient, a “caregivee,” a healthcare professional, an employer of a caregiver, or a friend or family member witnessing someone’s caregiving journey? Caregiving is not limited to these things! Do or did you have a high maintenance pet, caring for whom is/was socially unacceptable, embarrassing, interrupting your momentum? Maybe you’re “just” a single parent. Maybe you found yourself reentering the workforce when your partner was forced to exit the workforce unexpectedly, causing an instant switch in parental responsibilities.
How about all of us who work(ed) with or parent(ed) children and adults with physical disabilities, terminal illness, developmental delays and/or autism? Talk about dismissed and forgotten. You especially rock! How will you support your nonbinary child when you fear most that they’ll be a target, always in harm’s way? What if it’s possible that they’re going to be just fine?! What? Your grandkid’s now a they? And so is their circle of friends? What? Oh my gosh, are they trying to take over? Believe it or not, every generation is smarter than the last. Remember those Veterans? A wealth of wisdom and new intelligence! Our most precious treasures.
For the first time in human history, there are 5, yes FIVE, generations living together on our planet! What if collaboration is all we need to save our species? What if we’re just in a phase of evolution that’s in turbo mode? Things ARE happening fast! We CAN adapt! How will denying that increase our precision?
Which generation do you represent? How do you think your generation can make a difference? What new brain-based information are you learning about collaborating with the other 4 generations? Do you think caregiving only touches a select few generations? You’ll be surprised. Just read some of the other posts. What can we learn from each other? How can we apply that learning to our work lives, our families, our friendships, our communities? What do you think?
Caregiving really is a thing. More than the white elephant of alcoholism and other addiction in the room, nobody wants to acknowledge caregiving. Yet it’s going to touch us all if it hasn’t already. Let’s just talk about it. And let it be OK. The more we discuss it, the more likely we’re going to feel positive when the subject comes up. It’s there, it’s big, it’s getting bigger and it’s not going away. Shuddering and protecting ourselves by avoiding it isn’t going to make it go away. Is that really preparing us to experience it? And is that really facilitating healing or growing from our experience? Is that healing our communities? Is it helping our species shift to thriving?
The thing is, social pain hits our brains the same way as physical pain. Our brain doesn’t know the difference, even if our mind wants to. How are we going to preserve our dignity and that of our loved ones by continuing to allow ourselves to be dismissed and suck up our fears just to keep the peace? How dare we make a wave, right? That’s very real too. It can cost our loved ones their lives. It can cost us our own lives. It’s happening everywhere, every second of every single day.
We’re competing with the expert brain. Until the experts really get how their expert brains can undermine their expertise, we’re all pretty stuck. And guess what? We’re all experts. We all have expert brains. And we’re all leaders. Yes. We are all leaders. Outthinking our brains is the challenge. As we build the site, we’ll share resources to help us all do just that. Together, we got this!
Please share your caregiving experiences! Please share anything else that you would like carefume.com visitors to consider and/or discuss. Also, please share any suggestions to improve or easify the carefume.com visitor experience. Our goal is to provide transparency, trust and meaningful conversations about the realities of caregiving. It IS possible for it to be good. It’s our responsibility to make it good. Good resources, good companies and good products will also be acknowledged and shared as we find them.
Perhaps you found an awesome company or product along your way. Please share that and we’ll see if we can connect with them through carefume.com. Maybe you know of an amazing resource that will help others! Internet searches for resources, companies, products can be overwhelming when we’re over our eyeballs in the exhaustion and emotion that caregiving can create. And feeling defeated can happen fast when we find dead ends, like the service is discontinued, the company has been out of business for over a decade, the shelter is full, the program no longer exists, grant approval is immediate but the waiting list is 3 years.
In hindsight, what would you say helped you get through? How did you find yourself coping? What tips, tricks, hacks, advice can you share to help others in their caregiving journey? The GOOD can push the bad and the ugly out of the way. It’s time. Let’s do this.
Thank you for visiting! Thank you for sharing your caregiving stories and perspectives!
I’ve been a nurse for 26 years. I started as a LPN then became a RN. I’ve worked in the long term care setting (4 years) and hospital setting (20 years). Two years ago my mom who was 88 years old and lived alone, started to decline in health. Since I lived and worked in another state from her, made the decision to move my family (husband & granddaughter) in with her to care for her. One month after we moved she was diagnosed with multiple cancers. She was adamant that she was not going to leave her home to live in a nursing facility even though I felt she’d receive more extensive care and therapy. She was NOT going! We went through radiation, various cancer treatments, and medications, which all took their toll on her. But I was letting her make all the decisions on her plan of care. After three months, she decided she didn’t want to follow that route anymore and Hosparus was called in to help with her care at home. Four months later, the Monday after Mother’s Day, she passed away peacefully at home like she wanted. I felt blessed and honored that I was able to grant her wishes to stay at home. Of all the nursing jobs I’ve had over the years, caring for my mom has been the most rewarding. I am currently back to work in a long term care facility for adults with IDD.
There is a lot of guilt associated with caregiving. The caregiver many times will feel guilty for not doing enough or for not interacting well with the person they are caring for.
My caregiver experience includes caring for my mother in her end stage and my partner’s 53-year-old sister with Downs (who lives with my partner and me). I also was senior vice president of a non-profit senior community owner with three properties and multiple levels of care. Through all of my exposure to the business side, the patient side and the regulatory side, I believe the entire system needs an overhaul. Older adults and their families do not need to be financially stressed in order to pay for the care they need in order to live healthy lives as long as possible. In home services should be included in Medicare, Medicaid and personal insurance coverage without robbing families of their financial resources. And organizations who provide senior care services should not be owned and operated by hedge funds or other for-profit entities who are only interested in making money from Medicare, Medcaid and insurance payments. Businesses are good at business, not caring for people with often complex medical, physical and mental challenges. And these businesses aren’t willing to pay, train and reward staff who do the work of actually providing service. Regulations are designed to be scorecards that are easy for inspectors to check the boxes but do not improve the quality of care for customers and their families. It’s time to throw out the 1960s business and service models that are senior services in the 21st century.
Services for the mentally disabled, like my partner’s 53-year-old sister with Downs Syndrome, are particularly sparse for adults, who essentially are old people with the intellect of a kindergartener. Families are stuck caring the their loved one with Downs from cradle to grave, dawn to dusk. There are precious few options for residential care and programs that fill a few hours a week for the adult with Downs. Once again, a mid-20th century approach in the 21st century where advances in health care keep people alive longer but do little to improve the quality of life.
Change is possible and can occur with input from actual people who use or need these services, as well as their families. Enough of lawmakers listening only to owners of care-providing businesses, their lobbyists and the lazy regulators who are still using the 1965 rulebook. This is one of the grossest misuses of public tax dollars in the United States, for services that are inadequate and costly.
My Parents planned well ahead for their old age. They are/were very financially secure due to good planning and luck. My mother developed Parkinson’s, which manifested in balance and visual hallucinations. Her pride was the biggest source of her pain. She would not use a walker or cane because she did not want to appear “old” so she hung onto my father. (which made her look old) She would get upset when she realized that something she had done or said was due to one of her hallucinations, such as trying to pick up a fork that was not there.
This is to say, the bathroom downstairs, the handrails, the insurance purchased years before to cover long term care, were all blessings. They still were not ready for the mental and emotional toll of aging. I doubt few are, especially when they have had strong health all their lives. There is a myth that the mind exists – that it will be undisturbed by changes to the physical body. When she had a UTI – we had no idea what was happening. That a bacterial infection could create paranoia was a shock to us. Luckily Baptist East physicians figured that out – they were used to it.
Where to start…
I have been in the caregiving industry for 27 years, as a nurse. I think we all know what that entails. Long hours, sometimes being physically harmed by clients who are delirious, or have dementia, sometimes feeling like nothing you do helps. I’m blessed to have a job now with compassionate colleagues, who all care enough to ask how the others are doing. This has been vital, as the other issue is burnout. I’ve learned the importance of choosing the jobs that are best for my soul. Most of us will have to work the majority of our lives, so please be careful to choose something that can FEED your soul, not take years off your life. It’s also ok to know what illnesses/diagnoses you don’t feel comfortable or competent treating, and referring those clients to someone else, in order for them to get the best care, and for you not to feel overwhelmed. I’ve learned not to judge a book by it’s cover, as far as my clients go.
There have been so many positive experiences. There were times in my life when the patients in my care actually ended up lending me a supportive ear, providing me with sound, therapeutic advice!
I’ve felt the profound grief of losing a parent, and many dogs (yes, two different experiences). I know that without the support of my friends I would have been lost in a deep, dark hole. Please reach out to those around you when you are in pain. We are not meant to go it alone. Peace to all.
I became a caregivee unexpectedly in 2020 when I broke my leg in 4 places and my wrist in a bicycle accident. I ended up living with friends, a married couple, on their invitation for 2 months. They had a spare bedroom and bathroom on the main floor of their home, and a flat entrance to the outdoors. My own home, where I lived alone, had 6 steps at either entrance and no bedroom on the main floor. Since I’d broken my wrist, I couldn’t use crutches, so I used a wheelchair to get around. I remember feeling rather helpless at first, with a good deal of pain and lack of energy due to my body being in shock. I realized quickly that my work for the foreseeable future was to commit myself to the physical therapy exercises I needed to do to regain my strength and help myself heal. My friends cared for me in all the ways I could not care for myself. They shopped for food, prepared my food, cleaned my dishes, carried my plate, my cup, my flatware, my computer, my book – whatever I needed to take with me to the table. They moved their furniture so that the wheelchair could pass. They pushed me in the wheelchair on the occasions that I needed help. Thankfully, I was able to take care of my own hygiene. I always wanted to be able to do more than I could. The feeling of being a burden didn’t go away even when my friends told me I was not. As my wrist healed, I was able to do more with my hands and took on preparing some of our meals. I quickly found that a conventional kitchen is not wheelchair accessible. Using the sink was almost impossible. Using the stove and oven was also very dicey. Appreciation and gratitude for my friends during those first 2 months after the accident flowed and still flow in my heart. I do believe it brought us closer, though I would not want to go through it again – at least on my end. I would be privileged to care for either of them in a similar emergency.
Being a caregiver and someone’s life is one of the most rewarding things that will ever happen to you. Whether by necessity or by volunteering, your efforts greatly influence and assist the people or persons you are helping. I am not saying it is easy to do, full of sunny days and wonderful experiences, on the contrary, the help you give would be considered by others as work. My experiences range from caring for a parent in the later stages of cancer to the Joy and fulfillment of being a grandparent. These experiences have given me prospective as to the greatest gift one can give another is your time. Currently I am taking care of my two and a half year old grandson 3 days a week. He is an active sweet little child always on the go and exploring new things. He has had some medical challenges and difficulties early in his childhood, but has been surrounded by loving parents and grandparents to help him over some of these issues. We are all thankful that he is being able to function as a happy child at this point. No child or grandchild comes with a book of instructions, thankfully having been a parent I have some sense of direction as to learning and especially having fun. So let me describe the feeling of grandparenting from my perspective. Most every morning I throw back the covers as if I were on vacation, excited to do new things with my grandson that day. We spend our time learning, reading, exploring and having a lot of fun. It is a lot of activity, so I set up a schedule to provide both of us structure. At this stage of my life, time spent with my grandson provides both of us memories for us to carry forward in our lifetime. The day just seems to fly by when we are together and after he has returned home to Mom and Dad, I am pretty much spent, haha. I mean that in a good way, yes it is work, but the rewards are so wonderful. Just think of it for a minute, you now have the time and a greater degree of patience to help enrich the life of someone close to you, really what better way to end the day.
On Sept. 22, 2010 I was hit with taking care of a 14 month old. What was s’pose to be a month or two turned into this present day in 2022. He is mine and my parents son. We love and care for him as if we had him ourselves. He has a lot of health issues such as. RAD/ADHD/ODD/ASD depression and anxiety. We get kinship care of $300.00 a moth. Nothing more. We have been out together just her and I maybe twice in 12 years. My therapist tells me that self care is important. SMH , I wonder how we do that when we can’t leave our son by himself do to his issues. Recently while my partner’s Father was dying we had to bring him into our home in a hospital bed. He couldn’t walk due to cancer in his bones. Caring for him was a never ending day. He had to wear diapers and couldn’t do anything but on the hospital bed in our living room. Hospice really didn’t do anything but visit us. Meanwhile I was helping my parents out with things as they needed. Until you have to be a caregiver you will never understand. It is more than a full time job. It is your new life. You are 24/7 either mentally or physically helping that individual. Weather your home trying to relax or out shopping they are on your mind and in your heart. All Caregivers should have some kind of payment for their services.
I was a caregiver for my wife’s grandfather a few years ago. He was in his late 80s and suffering from dementia, possibly Alzheimer’s. He told me so many stories from his childhood and early adulthood which I thoroughly enjoyed. The experience was very rewarding, but at times, very stressful. I felt so inadequate on the days that he was confused or paranoid.
Working with at risk youth.
I always had a passion for working with those who were in need, always enjoyed being a positive influence or a encouraging friend who would be there for you. So when a friend brought up working with at risk teens I was more than thrilled to begin that journey, watching them grow along with their progress and seeing them succeed in their own ways. However, I was not prepared to work with the incompetent majority. No l’m not referring to the kids, whom everyone assumes will only fail or end up in worst situations, I’m talking about the multiple employees who are only there for a check and decent benefits. (Breaks my heart but I continue so at least these kids have someone who they can trust) these kids, especially the teen boys I worked with, mostly were looked at as delinquents and on a daily occurrence most were looked over or ignored for only wanting human interaction. Not all employees were like this but it killed me to see a vast majority of them who had no special interest in seeing these kids accomplish any of their goals. Also I hated that the employees who were cold and withdrawn emotionally from these kids were the ones constantly being appraised or given better positions because they fit the mold of what was considered a responsible care giver. Meanwhile, if I found a better route for a childs care or progress in their treatment but showed any care or attention to these specific residents, I was constantly under the scope for questionable interactions. As someone who cares for people, being told youre under investigation for something like pulling a child to the side and talking to them in a safe room makes you feel like a monster. (a little Intel, the child is suicidal, having PTSD flashbacks, so instead of hoping he didn’t find a way to harm himself I decided to try to talk him down) per the 2-4 weeks of training I went thru prior to actually working with said residents, I was instructed to de-escalate the situation and keep the client in safe hands. Apparently, as a 3rd shift worker, what I should’ve done was told the resident to go to sleep and continue to watch them and hope for the best while taking notes. That to me shows the kids that I don’t care about them, only keeping them alive for my shift and my shift alone. Instead, talking with the resident gave him hope and made him feel better about it, after our 30 minute conversation he was able to find sleep a little easier and was thankful the next morning when he woke up with a smile and better mindset. If you show any sort of care for the clients you are immediately under a scope and investigated. I understand the precautions, however, during my investigation, I was placed in a residential setting I wasn’t use to with little to no help from the current staff members and the stress of everything underlying why I was there caused me to have stress induced anxiety. The little to no training I was given did not add up to the experience someone should have while working under these certain stipulations. Sadly, I had to take medical leave and my boys felt I had abandoned them. Their behavior with new staff who were taking my shift at the time was declining and some of the residents who had begun to trust and enjoy my presence began to revert in their treatment. Most kids who are abandoned will lash out or became emotionally frustrated when they feel let down. Keep in mind some of these kids are simply there because their guardians failed them and their response was to act out to receive any reaction from their parents. And then, I received the call while on medical leave, that one of my residents had been ran over by the bus transporting them. If I wasn’t stressed before, that pushed me to my limit. Why are people with only a high school diploma allowed to work with these clients? Don’t get me wrong, I had the best intentions, but I was no where near prepared for what that job consisted of. Those kids need someone with experience. The “training” they offered was not enough. It was basic training at best. But I’ve also learned that America isn’t about making the clients better or getting them towards their treatment goal. It’s about what revenue they can get from filling those beds. The residents were cash cows and treated as such, a number on a sheet. The more I spoke out and began to call out employees for not doing their job, the more I was targeted. It then began to affect my job. When I needed help, calls were ignored and I was told to figure it out. A resident was put in a hold on the shift before me and hours later I find out that this kids elbow is messed up. No one thought to take him to the hospital as a precaution? I was furious, frantically calling my manager on shift to transport him. Unanswered. I continue to keep the client calm and finally a few hours go by and finally my manager is able to take my call. (half asleep) she tells me what I need to do and at that point I day no. You need to come transport him or I’m reporting you. Her retaliation was to get me fired. I was already shunned so at that point trying to fight it would’ve been pointless. My point is that you can care and love the person you’re taking care of but the “professionals” tell you you’re wrong that they know more and Later you find out you were right and not only your time but money was wasted in the process. You’re a cash cow. How much money can we squeeze out of this interaction? You have an educated opinion? You’re wrong. If we are expected to take on such roles we need more training. More guidance. Someone who will actually listen to us when we speak out. Don’t look at a chart and tell me what you think you know. Just listen. Just help.
I’ll have to admit that my experience with caregiving is not extensive and I’m not that great at it. Other than teaching, which is more about empowering people, I have fostered many animals and had to draw the line when it came to fostering kittens who needed bottles because I just can’t do the feeding every two-four hours. I have a son with neurodivergence and I have really dropped the ball with him over the course of his life. Part of the reason I got a divorce was because my enormous husband broke his leg and I just couldn’t imagine going through that with him in his old age. I think the deal is it takes a lot of work for me to take care of MYSELF, and I don’t have energy or patience for other people or animals whose lives might depend on me. It’s a huge responsibility that scares me. I take my mom to the grocery and doctor sometimes. I have cared for my Dad when he’s been sick and it is really stressful.
I grew up with an abusive stepfather, two alcoholics, and a codependent mom. I think I did enough caretaking during my childhood. I’m just selfish, I guess. Or smarter. You can decide.
I’m a caregiver for my dear friend with Multiple Sclerosis. We have become “experts” in the caregiving experience over the last 22 years. It’s been pretty scary. Meanwhile, I’ve found that I’m expected to perform the duties of certified, paid professionals. These good people pay money to be certified, licensed, to be paid professionals. But unpaid, “informal” caregivers are expected to perform these duties with no training, minimal support, and no concern for our own vocational choices or skills. My friend has lucked into an awesome nurse and nursing assistant for the last many years. How often are they allowed to visit? Not enough. What are they “allowed” to do?
Not enough.
Nah. We don’t have to do this. It’s pretty inconvenient. “Just let someone else deal with it.” They’ll gladly institutionalize our loved ones and process them through with zero regard for their health and safety, dignity, need for purpose, need for belonging, need for love. It’s not “their” fault. It’s just the “American” way right now. The rest of the world can’t seem to decide whether to fear us, laugh at us, or just quit dealing with us as they watch how we have so outsmarted ourselves right into flat out stupid. And we’re apparently too stupid to be embarrassed because we’re so busy lavishing in our greed, ignoring the reality that we’ll all be touched by caregiving and have this reality kick us in the teeth when we’re down for the count. No, I have no right to say such things. I’m just a caregiver, right? How much is this costing our economy? You’ll be amazed when you start looking it up.
We also have senior dogs, cats, and a younger German Shepherd dog requiring behavior vets, behavior meds, and a behavior trainer. Fortunately, the original trainer immediately identified that the pup had a behavior issue, not a training issue. They were able to connect us with behavior vets, and the pup was ready for behavior training after she started the behavior meds. The behavior meds manage her anxiety so that she can learn. How dare we have the audacity to care for these pets when our caregiving experience alone can be so overwhelming at times, right? This is why many pets end up in shelters, or euthanized immediately because they hurt someone. Does it matter that pets help people cope? Nah, we gotta get this messy being outta the way. Clear the path so we can get this caregiving mess over with and get on with our oh so important lives.
Some other countries and cultures appear to honor and cherish their loved ones, and they appear to be much happier, healthier and live longer. Longevity. Hmmm. What do you think about that? It looks pretty inconvenient, eh? Kinda messy at times too. What? I didn’t sign up to chase bodily waste! I don’t have time for this. I need to do my own dishes, mowing, laundry. I draw the line at cleaning bodies. Ok. What did we sign up for? We want to live with blinders on and “let somebody else deal with it.” I’ve been fortunate more than many and most when it comes down to it. But I and my families are some of the lucky ones. We’re not special. We’re not better. We’ve just been really lucky. Meanwhile, I’ve designed my life and career paths around unpaid caregiving.
My mom, aunts, and cousins have helped my 100 year old WWII Veteran grandpa care for himself so well that he is still like an OX! I also watched my grandfather care for my grandmother with congestive heart failure and diabetes. The whole family helped as needed and was there for them as caregiving demands increased. It’s truly amazing and even more inspiring to see how acceptance of the caregiving experience can keep our loved ones healthy, happy and thriving! Meanwhile, I’ve watched them all design their lives around unpaid caregiving.
I watched my stepmother care for my dying dad, performing nursing duties unpaid, not certified or licensed, while caring for her own elderly mother and my 2 younger brothers. I watched my aunt care for her husband/my uncle, and another aunt and her husband care for her brother/my uncle. My cousin is caring for her mother right now. I watched my grandfather care for my grandmother with Alzheimer’s, then my aunts step up to help as they could. It’s another case of us being lucky. Yet the bottom can fall out any second because it’s not about what the patients and caregivers need when it comes down to it. It’s about what fits into our “system,” isn’t it?
We like to think this is all “normal,” yet our system is not “normal.” The top’s gonna blow. Anytime. Oh wait. It blows every day. Another life lost, unnecessarily. Someone was in a hurry. They were tired. They were overworked. they are not “allowed” to collaborate with our loved ones’ regular health care professionals. They made the decision for the greater convenience, not for the greater good. It’s not their fault. It’s their brains.
This is all the same song it’s been for too many years. Our medical professionals’ practices are dictated by insurance companies. What’s important is money, not life or livelihood. So, why aren’t the insurance agents required to go to medical school? Why are our doctors required to answer to them? I work as a pretend patient for students of health professions. Our good doctors teach them how to do the right thing for the greater good. But they also have to teach them how to navigate through the insurance game. It reduces us all back to just survival.
The answer isn’t as political as we want to think. It’s our brains. Our brains are in survival mode and only the “strong” survive in that mode. The game can shift. We can shift to thriving when we know it’s really ok to thrive. Right now the game looks and feels dirty because it is. Yet a clean game can be so much more powerful all the way around. We’re not going to survive if winning means weakening the “strong” so that we can win. That’s the dirty game we’re requiring ourselves to play. Because we refuse to learn about ourselves. The people playing the clean game are shamed, targeted, “weakened” more than not. Or they have to compromise their integrity to protect themselves. That’s also weakening. “Beat them at their own game?” Yeah, that works for a minute. What’s it doing to us though? It’s killing us.
All we need to do is collaborate. We’re capable of learning about ourselves and now, we have more information on how our brains work. It’s how the failing entities are turning themselves around quickly, even surprising themselves! We have so much to offer each other, our families, our communities, our species. Our elders have wisdom. But we move them out of the way and cut them off from everything that keeps them going. Our youth have intelligence beyond belief. But how dare they disrespect us with their new fangled bs ideas? Hmmm. Let’s collaborate. We’re tired. We can shift to energized when we quit throwing stones. Taking ourselves so seriously is wasteful and exhausting. We’re not special. We’re human. We’re animals. Animals are cool. We kinda need them. We’re acting like savages. It’s become normal and business as usual.
I worked with adults who have developmental delays and/or autism for many years, from many angles, most related to caregiving. My introduction to that work was in a day program/”sheltered workshop setting” where I worked with 130-150 really neat people. I learned about how disregarded they are by society. And I witnessed how quickly caregivers can be ignored when acknowledging and listening could have saved their loved ones lives, preserved their dignity, maintained a quality of life that was judged and ridiculed because people can really just be jerks. I also learned quickly how easily disabled people can be exploited, and just how common that really is.
I am Gen X. Yep. Bet you would have never guessed that if you don’t know me! I decided to study more Business Psychology at this young age. If I’d have completed these studies 30 years ago/after college, I would still find that most of what I’ve learned in this program is new. They have learned so much about the brain in the last 20-30 years, it’s unreal. And it’s really cool. Mostly, it’s really exciting. We humans are so powerful. We have no earthly idea. Yes, we can make magic and we can create our own special miracles. We just have to do it together or it’s going to keep going sideways.
This site is for collaborating. This comment/post is simply the perspective of a Gen X’er who has been touched by caregiving. I’m not blaming anyone for anything. I’m saying we need to outthink our brains. And I think we can. I’m not the only one who thinks this. The idea isn’t mine. It’s not an idea at all. It’s what we humans can do now that we know how the brain really works and now that we’re learning more about that really fast. Let’s just start collaborating. Let’s learn from each other and contribute to our greater good. Let’s shift to thriving.
My husband was diagnosed with Stage 4 Marginal Zone Non Hodgkin Lymphoma l, in his bones, a year and 1/2 ago. The drs recommended watch & wait before treatment would begin. This consisted of monitoring his bloodwork, scans, and symptoms for progression. That did not last long as his cancer progressed rapidly. We had to become experts in deciphering bloodwork results. Once his blood counts tanked they began his chemo treatment/infusions. With each treatment he became weaker and required more help with daily activities. We are both retired so I was able to assist him around the clock. Generally about 10 days following treatment he lacked any energy or ability to do much. He had very little appetite or desire to do anything. As his completed his chemo it has taken many months to get back to feeling any normalcy.
Through it all, I’ve relied on my faith for strength to God is in control and to support him through his treatments. He has come to a point of remission, as there is no cure for his type of cancer we pray this waiting period will be very long.