1. < Caregivers

When the strong one isn't so strong

Posted by incognito @sbsurfside, Apr 10, 2020

Good Morning Everyone: I see so many challenging journeys that go on, and I'm not sure if I should even step into this, but here goes as I imagine many others have also felt that way. My husband was diagnosed with Stage 4 colorectal cancer just shy of 2 years ago. It was unexpected in his otherwise healthy life, and we were told he likely had 6-12 months left. The experience of 4 missed diagnosis, travel from Florida to Houston for verification and initial treatment, referraly to Mayo's Jax office, relocating to be closer to treatment (still 3 hours away), maintaining and then modifying my work to be a remote contributor, losing my 14 year old dog, assisting my new college age son to relocate to Kansas City....... it's been a wild ride. He has reacted incredibly well from chemo that is now given orally every other week. I see the impact on him (dizzyness, less mental acuity, numbness, frequent urination, numbness in his feet, etc.) but he has an amazingly positive attitude and faith in God that has kept him going. I guess my faith isn't quite so intense and I find myself sometimes "fine" and sometimes with this increasing level of angst, frustration, anger that all this has happened. This is a second mariage for me after raising my son alone, and we were just starting to settle into a nice life. Clearly not everything is "fair" in life, but on some days I hae a hard time embracing that. His children are not with us and not terribly supportive anyway (one is a teen, so that's normal; the other should be an adult at 33 but really isnt). My son has been a positive support for me, but he's starting his own life as he should.

My husband is loving, kind, eager to please and until this pandemic did most of our food sohpping and cooking. How awesome is that when you work!! He'd even love to have sex (at age 73) with regularity, and yet between menopause issue (age 61), I have little to no interest. Plus, I have read that the chemo isn't good for the partner (not sure if that's true or not). We have so much to be thankful for - we are able to manage his treatments from home with just periodic scans since they say he cancer is greatly reduced; we have a comfortable home and lifestyle thanks to my job; our extended families are loving, although not near by. Yet somehow, I still feel like some days I can barely breath or lighten my heart. I know it's not his fault but I find myself resentful of how this has happened and feel terrible for it. Maybe I need a kick in the pants along with my morning walks, but it would be nice to hear how other caregivers move through these types of feelings. Thanks for letting me vent.....

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 10, 2020

Hi @sbsurfside I am sorry to read of your husband’s health situation and your journey as a caregiver. I don’t think anyone is ever ready for that moment in time when a doctor looks at us and says ‘you’re now a caregiver’! At least I wasn’t!

My name is Scott and I was my wife’s caregiver for her 14+ year war with brain cancer. She was diagnosed at 49 and cancer certainly upended the life we had been hoping for. It's amazing to me how a disease can just take over like cancer can! It changes a caregiver and certainly devastatingly changes our loved ones.

While every patient, their cancer, and one’s caregiving journey are unique I did feel many feelings similar to yours as a caregiver. Highest among them was how much of a roller coaster my emotions were on while caregiving. I had feelings I never imagined! I think it is important to know there are no right or wrong ways to feel, we just feel as we do at the moment. It took me awhile, but eventually I came to accept that whatever I was feeling at the time was no wrong or anything. They were all OK. I wish there was a way to banish all feelings of doubt and guilt for caregivers, but there just isn’t. They seem to always crop up at times. I like to say we need to remember superheros only exist in comic books. We caregivers cannot be Wonder Woman or Superman!

My entire personality changed as I transformed from a partner with my wife to the person who had to do everything. I came to have a totally different idea of what was essential to our lives and what all really wasn’t as the demands of caregiving dictated. As with most caregivers I was ill prepared for the ultimate set of routines I had to take on for the two of us and our entire family. Thankfully my wife and I immediately had all the most difficult of conversations over her last wishes, power of attorney, health care advance directives, estate plans, giving some gifts she wanted to, etc. and it paid huge dividends, especially after we had seen other family members not do so.

I'm glad you are here and please know this is a great community for caregivers to vent, get hints, tips, suggestions, ideas, and just to visit with folks who really know what the caregiving journey is like.

Another of my favorite caregiving quotes is this one: “Courage does not always roar. Sometimes courage is simply the quiet voice at the end of the day whispering ‘I will try again tomorrow’”

Glad you are here on Connect and know you can vent here anytime!

REPLY
2 replies
Melissa Repanshek | @melissarepanshek | Apr 17, 2020

Incognito-My husband suffered his first heart attack a week before his 39th birthday (we had been married 9 years, my son was 6 my daughter 1). He has had 5 others since that time, triple bypass followed by two of those grafts failing, has 25 cardiac stents implanted, along with a stroke, a pulmonary embolism, multiple TIAs, two bad knees that cannot be replaced due to his other comorbidities and various other events. My son, 30, has social anxiety yet still manages to teach high school education. My daughter, 25, also suffers from social anxiety and she is on lexapro to manage it. She too teaches high school science.

We just celebrated our 33rd anniversary. On the day we wed part of my traditional vows stated "in sickness and in health". I never knew at that time how weighted that part of my vow would be. Yet it became quite apparent to me as the years went on. Before my husband became disabled his was a financial advisor for Merrill Lynch and I had the pleasure of being a stay at home mother. Our life too was quite different before illness struck, and would have been dramatically different had he been able to remain employed.

To add to the "fun" in 2000 my father passed away and my mother moved in with us. She lived with us for 17 1/2 years. The first 12 were actually quite wonderful because when my husband was in and out of the hospital (at his worst he could be in the ER 2 times per week) she was able to take my children to and from school, she did the laundry and cooked so I could work full time to try to support our family. The last 5 1/2 years of her life though I watched my mother slowly become legally blind from macular degeneration, lose her hearing, and suffered from cirrhosis of the liver from years on methotrexate for her severe psoriasis. My father was blessed by dying in his sleep peacefully. Such was definitely not the case with my mother. I was an only child so I had no other siblings to step in and help me. Yet despite his health issues, my husband was amazing with my mother. He took her to her doctors appointments and to the grocery store, as did my children who were young adults by then. Grandma had taken care of them, and now it was their turn to return the favor to her.

I began to suffer full blown panic attacks one year after my son was born. They hit me from out of the blue. I had no idea they were preparing me for what was to come. When you have someone who is disabled in your home, the entire family becomes disabled. My children never wanted birthday parties because they were afraid we might have to call the ambulance for Dad while their friends were over. From 2000-2017 my husband and my children never had the opportunity to take a simple family vacation because we could never stray too far from a hospital. Families where everyone is basically healthy have no idea what a gift they truly have! The statement: If you have your health you have everything rings so true for me and my family.

Now here we are 33 years down the path... I am still working full time, yet may experience a furlough due to the CoVID-19 pandemic. I will know my fate next week. My husband was just in the hospital last weekend with chest pain. My daughter just had surgery in March for endometriosis and double hernias. So our health challenges continue.

So now with all of that being said--I wouldn't trade my husband for 100 healthy ones. He is and always will be my hero. Why? Because as tough as his illnesses were on me, it was HE who experienced them first hand and still tries to live as normal a life as he can. To look at him people would have no idea what is going on inside his body. One time when he was in the hospital at his sickest, there was another gentleman in a bed down the hall. He was quite young and had been diagnosed with pleuracy. He did not want to eat and thought he was on his way out. My husband's nurse, who knew him quite well obviously, asked him if he would go speak with him. He sat with the man and talked to him. Once he left the room the young man asked for a dinner tray. It was then that I decided I too would make it a point to always try to help others make their way through life's challenges.

In my years I have learned to simply take one day at a time, often times just get through one minute to the next. I am quite the expert in deep breathing. LOL In my home we learned to celebrate the little things most others take for granted. In doing so our family is extremely close, because we have been through so much together. On days when my husband is doing well, we do what we can. Right now it's tough because of the shelter in place, but we still take a lunch and go sit under the bridge by the intercoastal and watch the boats/fisherman/kayakers. We laugh and joke. Laughter truly is the BEST medicine. Finding joy and peace in the little things keeps me sane. Instead of feeling sorry for myself, I look back on all that I have been through and tell myself, "Melissa, you are an incredibly strong woman, and you should be extremely proud of yourself!" You have made it through many trials where others would have surely failed.

I wish you luck, Incognito. There have been plenty of times when I felt like giving up. But now at 57 (hubby is 62) I am happy with where we are in our lives. We look forward to the day when both children hopefully marry and we might be blessed with grandchildren. We choose to always look ahead, and to remain positive. Hang in there.

REPLY
1 reply
incognito | @sbsurfside | Apr 20, 2020
In reply to @IndianaScott "Hi @sbsurfside I am sorry to read of your husband’s health situation and your journey as..." + (show)
@IndianaScott

Hi @sbsurfside I am sorry to read of your husband’s health situation and your journey as a caregiver. I don’t think anyone is ever ready for that moment in time when a doctor looks at us and says ‘you’re now a caregiver’! At least I wasn’t!

My name is Scott and I was my wife’s caregiver for her 14+ year war with brain cancer. She was diagnosed at 49 and cancer certainly upended the life we had been hoping for. It's amazing to me how a disease can just take over like cancer can! It changes a caregiver and certainly devastatingly changes our loved ones.

While every patient, their cancer, and one’s caregiving journey are unique I did feel many feelings similar to yours as a caregiver. Highest among them was how much of a roller coaster my emotions were on while caregiving. I had feelings I never imagined! I think it is important to know there are no right or wrong ways to feel, we just feel as we do at the moment. It took me awhile, but eventually I came to accept that whatever I was feeling at the time was no wrong or anything. They were all OK. I wish there was a way to banish all feelings of doubt and guilt for caregivers, but there just isn’t. They seem to always crop up at times. I like to say we need to remember superheros only exist in comic books. We caregivers cannot be Wonder Woman or Superman!

My entire personality changed as I transformed from a partner with my wife to the person who had to do everything. I came to have a totally different idea of what was essential to our lives and what all really wasn’t as the demands of caregiving dictated. As with most caregivers I was ill prepared for the ultimate set of routines I had to take on for the two of us and our entire family. Thankfully my wife and I immediately had all the most difficult of conversations over her last wishes, power of attorney, health care advance directives, estate plans, giving some gifts she wanted to, etc. and it paid huge dividends, especially after we had seen other family members not do so.

I'm glad you are here and please know this is a great community for caregivers to vent, get hints, tips, suggestions, ideas, and just to visit with folks who really know what the caregiving journey is like.

Another of my favorite caregiving quotes is this one: “Courage does not always roar. Sometimes courage is simply the quiet voice at the end of the day whispering ‘I will try again tomorrow’”

Glad you are here on Connect and know you can vent here anytime!

Jump to this post

Thank you, Scott for your reply. It's helpful to hear how you (and others) have handled this journey and to know I'm not the only one..... as much as my practical side understands that, my emotions are not always as pragmatic. I like your quote..... I will continue to do my best even as it may change from day to day.

REPLY
incognito | @sbsurfside | Apr 20, 2020
In reply to @melissarepanshek "Incognito-My husband suffered his first heart attack a week before his 39th birthday (we had been..." + (show)
@melissarepanshek

Incognito-My husband suffered his first heart attack a week before his 39th birthday (we had been married 9 years, my son was 6 my daughter 1). He has had 5 others since that time, triple bypass followed by two of those grafts failing, has 25 cardiac stents implanted, along with a stroke, a pulmonary embolism, multiple TIAs, two bad knees that cannot be replaced due to his other comorbidities and various other events. My son, 30, has social anxiety yet still manages to teach high school education. My daughter, 25, also suffers from social anxiety and she is on lexapro to manage it. She too teaches high school science.

We just celebrated our 33rd anniversary. On the day we wed part of my traditional vows stated "in sickness and in health". I never knew at that time how weighted that part of my vow would be. Yet it became quite apparent to me as the years went on. Before my husband became disabled his was a financial advisor for Merrill Lynch and I had the pleasure of being a stay at home mother. Our life too was quite different before illness struck, and would have been dramatically different had he been able to remain employed.

To add to the "fun" in 2000 my father passed away and my mother moved in with us. She lived with us for 17 1/2 years. The first 12 were actually quite wonderful because when my husband was in and out of the hospital (at his worst he could be in the ER 2 times per week) she was able to take my children to and from school, she did the laundry and cooked so I could work full time to try to support our family. The last 5 1/2 years of her life though I watched my mother slowly become legally blind from macular degeneration, lose her hearing, and suffered from cirrhosis of the liver from years on methotrexate for her severe psoriasis. My father was blessed by dying in his sleep peacefully. Such was definitely not the case with my mother. I was an only child so I had no other siblings to step in and help me. Yet despite his health issues, my husband was amazing with my mother. He took her to her doctors appointments and to the grocery store, as did my children who were young adults by then. Grandma had taken care of them, and now it was their turn to return the favor to her.

I began to suffer full blown panic attacks one year after my son was born. They hit me from out of the blue. I had no idea they were preparing me for what was to come. When you have someone who is disabled in your home, the entire family becomes disabled. My children never wanted birthday parties because they were afraid we might have to call the ambulance for Dad while their friends were over. From 2000-2017 my husband and my children never had the opportunity to take a simple family vacation because we could never stray too far from a hospital. Families where everyone is basically healthy have no idea what a gift they truly have! The statement: If you have your health you have everything rings so true for me and my family.

Now here we are 33 years down the path... I am still working full time, yet may experience a furlough due to the CoVID-19 pandemic. I will know my fate next week. My husband was just in the hospital last weekend with chest pain. My daughter just had surgery in March for endometriosis and double hernias. So our health challenges continue.

So now with all of that being said--I wouldn't trade my husband for 100 healthy ones. He is and always will be my hero. Why? Because as tough as his illnesses were on me, it was HE who experienced them first hand and still tries to live as normal a life as he can. To look at him people would have no idea what is going on inside his body. One time when he was in the hospital at his sickest, there was another gentleman in a bed down the hall. He was quite young and had been diagnosed with pleuracy. He did not want to eat and thought he was on his way out. My husband's nurse, who knew him quite well obviously, asked him if he would go speak with him. He sat with the man and talked to him. Once he left the room the young man asked for a dinner tray. It was then that I decided I too would make it a point to always try to help others make their way through life's challenges.

In my years I have learned to simply take one day at a time, often times just get through one minute to the next. I am quite the expert in deep breathing. LOL In my home we learned to celebrate the little things most others take for granted. In doing so our family is extremely close, because we have been through so much together. On days when my husband is doing well, we do what we can. Right now it's tough because of the shelter in place, but we still take a lunch and go sit under the bridge by the intercoastal and watch the boats/fisherman/kayakers. We laugh and joke. Laughter truly is the BEST medicine. Finding joy and peace in the little things keeps me sane. Instead of feeling sorry for myself, I look back on all that I have been through and tell myself, "Melissa, you are an incredibly strong woman, and you should be extremely proud of yourself!" You have made it through many trials where others would have surely failed.

I wish you luck, Incognito. There have been plenty of times when I felt like giving up. But now at 57 (hubby is 62) I am happy with where we are in our lives. We look forward to the day when both children hopefully marry and we might be blessed with grandchildren. We choose to always look ahead, and to remain positive. Hang in there.

Jump to this post

Thank you Melissa. You've had quite the journey and I really like seeing your perspective and finding the "happy" i your life. I know that my husband and I enjoy so many blessings and to focus on them will help with the journey.

REPLY
tasher3433 | @tasher3433 | Aug 30, 2020
In reply to @IndianaScott "Hi @sbsurfside I am sorry to read of your husband’s health situation and your journey as..." + (show)
@IndianaScott

Hi @sbsurfside I am sorry to read of your husband’s health situation and your journey as a caregiver. I don’t think anyone is ever ready for that moment in time when a doctor looks at us and says ‘you’re now a caregiver’! At least I wasn’t!

My name is Scott and I was my wife’s caregiver for her 14+ year war with brain cancer. She was diagnosed at 49 and cancer certainly upended the life we had been hoping for. It's amazing to me how a disease can just take over like cancer can! It changes a caregiver and certainly devastatingly changes our loved ones.

While every patient, their cancer, and one’s caregiving journey are unique I did feel many feelings similar to yours as a caregiver. Highest among them was how much of a roller coaster my emotions were on while caregiving. I had feelings I never imagined! I think it is important to know there are no right or wrong ways to feel, we just feel as we do at the moment. It took me awhile, but eventually I came to accept that whatever I was feeling at the time was no wrong or anything. They were all OK. I wish there was a way to banish all feelings of doubt and guilt for caregivers, but there just isn’t. They seem to always crop up at times. I like to say we need to remember superheros only exist in comic books. We caregivers cannot be Wonder Woman or Superman!

My entire personality changed as I transformed from a partner with my wife to the person who had to do everything. I came to have a totally different idea of what was essential to our lives and what all really wasn’t as the demands of caregiving dictated. As with most caregivers I was ill prepared for the ultimate set of routines I had to take on for the two of us and our entire family. Thankfully my wife and I immediately had all the most difficult of conversations over her last wishes, power of attorney, health care advance directives, estate plans, giving some gifts she wanted to, etc. and it paid huge dividends, especially after we had seen other family members not do so.

I'm glad you are here and please know this is a great community for caregivers to vent, get hints, tips, suggestions, ideas, and just to visit with folks who really know what the caregiving journey is like.

Another of my favorite caregiving quotes is this one: “Courage does not always roar. Sometimes courage is simply the quiet voice at the end of the day whispering ‘I will try again tomorrow’”

Glad you are here on Connect and know you can vent here anytime!

Jump to this post

Thank you, Scott. Tears are rolling down my face.

REPLY
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