Prepare Early

From experience, I would say prepare yourself early. For safety reasons. You see, my Dad was a proud man. Very independent. Going to the doctor, was a struggle. A real struggle. But after December 2010, he went monthly. And it was regular. Nothing we'd have to argue with him about.

Going to the hospital, was a different story. Completely different. And when we left the hospital, after the holidays that year, we'd be sent home with a walker. A traditional walker. My Dad would not have anything to do with it. And it would sit in our washroom, for nearly 2 1/2 years. Unused.

We didn't really need it. Not at the time. My Dad, was doing OK. And I mean, OK. He wasn't doing great. There were real life struggles. Every single day. He struggled to walk, some days. His knee, bothered him a lot. He lost his balance, from time to time. But he was doing OK.

In May 2013, everything changed. As soon as the school year would end, my Dad's health would quickly fade. And it was my Mom and I, taking care of my Dad. Alone. Honestly, we thought he'd had a stroke. He just wasn't himself. And he could barely get around. Sitting up, at times, was a real struggle.

This would have been the time, I would have thanked Jesus, for some of that safety equipment. My cousin would bring us a transfer belt. But my Dad would cry, anytime he saw us bring it out. It didn't hurt him. He just didn't want us to use it. I think he saw it, as a sign of bad things...

So my Mom and I would struggle. And struggle we did. From the time my Dad would wake up in the morning. It would take the two of us, to get him out of bed. And our trusty old walker...finally got some use. One of us, would stand in front of it. Holding it steady. And the other, behind my Dad. And we'd "shuffle" our way around the house. To the bathroom, to the living room, sometimes outside.

The one thing I was grateful for, was my auntie had given us, some of my uncle's equipment. It had sat, unused in our home, for about 4 months. My uncle had past away, months before. And we had a wheelchair. It was a more compact version. They used it for traveling. And well, in our old home...the doorways are narrow. This worked perfectly! I could put my Dad, in the wheelchair, and get him...where he wanted to go.

On those tough days, we'd put my Dad in the wheelchair. Then use the transfer belt, to secure him. Because he couldn't even sit up. Some days were so tough. Honestly, it was a lot of carrying him around. Picking him up. Helping him, into the wheelchair. Then having to maneuver the wheelchair, over the steps in our home.

We also had one of those chairs, that goes over the toilet. But my Dad refused to use it. We did convince him, to use a shower chair. I'd help get my Dad into the shower. And my Mom would bathe him. Then I'd help them get out. And we'd get my Dad dressed.

My Dad would make an improvement, over that summer. When he had some blood transfusions, had been hospitalized, and was being watched over...by better doctors. But it was still tough. There were still days, when he'd fall. Fall from a sitting position. Or couldn't get out of bed. He'd fall on the ground. In the middle of the night. And it was pure strength and will, on my Mom and I's part. Sometimes, it would take an hour. To get him from a laying position, to sitting, eventually up to his wheelchair. And then another hour, to get him into bed.

Looking back, it wasn't a good idea. We were literally killing ourselves. I'm still struggling, with back issues now. For over 2 years, I would pick up my Dad. Lots of times, by myself. I really wish, I had had tools, in those early days...to make it easier.

After my Dad was hospitalized in March 2014, we got HomeCare. And PT came with that. They'd teach my Dad, how to help me. Especially, when he would fall onto the ground. They'd try, to help me, as much as possible.

At this point, my Dad was using his walker. Regularly. And we'd been trying, to get a four wheeled walker. I would purchase a better shower chair. We'd have a bar, in the bathroom. And PT, would evaluate our home. They'd let us know, what we needed.

My Dad was never OK, with having the "traditional bars," placed in our home. There was no permanent bars in the shower, or by the toilet. We could have used those. We also could have used, a removable shower head. Something that would have made bathing him, a lot easier.

It would take us, over 6 months, to be approved for that four wheeled walker. We'd NEVER be approved for a wheelchair. And it would take my Dad, falling out of bed...just weeks before his death, to get a hospital bed.

Was it tough? Yes! Did it take a long time? Yes! Was it mostly do to insurance approvals? YES! In fact, when we got the four wheeled walker...it was our doctors, "strong arming" the insurance company. They'd tell them, we'd remain in the hospital, until we got one. So the bill could be hundreds of dollars...or thousands. It was up to them. The next day, a brand new walker, was delivered to our hospital room.

The hospital bed...was a long story. It was recommended since January 2015. We did not receive it, until the second week of March 2015. After my Dad had a seizure, and rolled out of bed. Knocked unconscious. And sent back to the hospital. Again, our doctors would fight with our insurance company. Which ironically, was with the hospital. They'd keep my Dad, until the bed was delivered. Literally, one night they came to our home at 9PM. Set up the bed, gave me a phone number, in case we had problems. And left. I'd never hear from them again. But we'd bring my Dad home, at 10PM. That same night.

It's not that our insurance company was horrible. But there are a lot of claims out there. Our first walker was delivered quickly, because my Mom and I, called a federal health agency. We felt like my Dad, wasn't receiving the care he should. If you ever feel that way, do the same. In about a five year period, we'd call them three times. And they'd immediately help us. While we were in the hospital, or at home. In December 2010 I think our poor care, was partly because my Dad was hospitalized days before Christmas, to just after New Year's.

But once we reported them, things moved quickly. Tests were done. All the supplies we'd need, became available. We were able to meet with specialists. It was like, we had been sprinkled with magic dust. The wheels on the operation moved efficiently, after that report.

Later that month, we'd sign up for health insurance, with our hospital. And things would improve. Drastically. We'd get a better doctor. We were able to see specialists. In fact, my Dad would have 3 surgeries between December 2010 and March 2014. His healthcare, was improving.

But insurance companies, are still insurance companies. They still don't want to have to approve everything. We had AMAZING doctors, that ALWAYS fought for us. They'd personally get on the phone, and fight it out. With insurance companies, equipment companies, whoever they needed to. Our HomeCare nurse and physical therapist, would do the same.

Without these people, it would never have been done. But I know, we could have started the process sooner, than we did. Even if my Dad didn't want it. It would have made us more prepared. Because one day, he could be perfectly fine. Then next, he couldn't do anything for himself.

Our stress levels, would have also been better. We could have had one less thing, to worry about. And probably avoided, hurting ourselves, in the process. If you are in the same boat, don't wait. As soon as you notice your loved one struggling, tell your doctor.

Let your medical team help you. That's what they're there for. Describe to the doctor or nurse, how your loved one is struggling. Or maybe you are worried about their safety. All of those things, will help your case. Especially, if your loved one is receiving PT.

I just say, to start early. Prepare yourself, for everything and anything. We could have used safety equipment, months before we got it. We could have used a hospital bed, at least a year, before we got it. The "training" we got, from our medical team, could have happened earlier. It helped my Mom, learn how to pick up my Dad. It taught my Dad, how to help us.

Lessons Learned. That's how I'd describe this. But it's definitely an experience, that I'd like to save you from. Get the equipment as early as possible. Find a room or closet, to house it. Until you need it. It's better to have it, on hand. Then to be in the middle of some storm, without the items you need. Waiting for insurance companies to approve your doctor's referral. And supply companies, struggling to find what you need. ❤❤❤

Why Support Groups Matter

I have a few friends, who either have walked this journey not long ago, or who are in the middle of the journey. I get a lot of the same questions. Almost daily. How do you manage? Does it get easier? Really, what were your first days like?

 

My answer is always the same. I managed, because of support groups. This has been the toughest journey, I've ever walked. And most days, feel overwhelming. But the support groups, they help so much!

 

From the beginning of our journey, our medical team, recommended joining a support group. We were lucky, in that the hospital where my Dad got treatment, had an amazing Support Group. They'd welcome us, with open arms.

The day that we got a definite Stage 4 diagnosis, we were embraced. They called in, so many people to talk with us. To comfort us. And to lend a shoulder, to cry on. The man, that was in charge of the group at the time, came to speak with us. Two days later, we were sitting in the Support Group.

Once a week, for 6 weeks, they'd have a group meeting. Lunch was always included. No one ever felt, like they had to hold back. We had various speakers, come talk to us. Doctors, nurses, religious leaders, former patients, family...anyone associated with cancer. Then they'd open up the floor, for the patients, family, and caregivers to speak.

The people who attended our support group, were amazing! At your weakest point, they were there to support you. Embrace you in hugs. Give you words of encouragement. Give you advice. It truly, saved my Mom and I. Especially, in those early days.

My Dad wasn't too happy, about going to our support group. The day of the meetings, he was usually a little grumpy. I think we only got him there, because there was a free lunch involved. But after the first session, my Dad saw how important it was, for my Mom and I. And although he wasn't over the moon about going, he didn't give us a hard time, about attending.

There were some days, that were definitely tougher than others. Whenever morality would come up, my Dad would check out. He didn't want to hear about death. It wasn't something, he wanted to talk about. And when that would happen, I'd go sit with my Dad, outside the meeting.

Looking back now, I realize it had more to do with my Dad, processing what was happening. How his life, was nearing the end. And he wasn't ready to process that...not yet. But it was a helpful group. Many of the people that attended, had been through cancer before. They were entering, their second or third battle, with this disease.

We met some truly amazing people, in that group. One woman, still comes to mind. I think about her, at least once a week. And I wonder, how her journey ended. And if she ever found peace.

You see, this woman was just a few years older than me. In her mid-thirties. She was diagnosed with an incurable breast cancer. And only had months to live. She also had 2 very small boys. When we first met her, she was so angry. Angry at God, her doctors, life in general.

We'd go to group. And without a doubt, she'd sit next to me. Every week. Commenting on little things. Like she liked my nail polish. Or thought my hair looked nice in braids. Or did I catch the latest episode, of her favorite show. And after the first meeting, I tried to have little things for her. A bottle of nail polish, a candy bar, maybe a book I'd enjoyed.

By the end of our support group session, we had developed a friendship, of sorts. She'd tell me about her fears. Of having to leave her sons. And not having any family. What would happen to her babies? Why did the cancer happen to her? What was her life going to come to? She had lived a tough life. And this, just darkened it.

She would tell me, to share her story. One day, she wouldn't be here. And no one would know, what she'd been through. I at least, knew some of her story. The parts, that she was strong enough, to talk about. The things, that weighed the most, on her heart. It was really, a heartbreaking story. Of a young mother, scared for her babies.

Our sessions ended, in the summer. But we'd still manage to see people from our support group. Everyone attended doctors' appointments, chemo, and radiation in the same buildings. And from time to time, we'd see that same lady.

Like my Dad, she'd opted to try chemo. To extend her life. Even if, it was just by a few weeks. They both knew, there was no cure. But they wanted to live, as long as possible. My Dad was at his 4th or 5th session. My Mom had stepped out, to go grab us a snack. And there she sat. The woman, that wasn't much older than I. She sat crying. Crawled up, into a ball. In the chair next to my Dad.

He'd reach out to her. Grab her hand. And tell her, "You're not in this alone. If I can do it, so can you. It's not easy. We're not lucky. But we can do this. We can do this together! We're here for you." She would continue to cry. But she'd sit up. And look at my Dad. Stare into his eyes. "Do you think so?" It was a timid voice. Something you'd imagine from a frightened child.

My Dad would struggle to get out of his char. So many tubes, coming out of everywhere. He'd give her a hug. And would promise, to be there for her. And bravely, she'd call over to the nurse, so she could begin her treatment.

We'd see her, a few more times. In the chemo room. That would be, the only time, we'd sit next to each other. But from then on, she'd wave from across the room. Put on a smile. And write a little note, to my Dad. We'd usually get it, on our way out.

It's crazy, how even in chemo, my Dad was able to inspire, comfort, and encourage someone else. By the Fall, my Dad would be struggling. We'd be in and out of the hospital. Taking time off, from chemo. Trying radiation. And we wouldn't see her, anymore.

I always wonder, what happened to our friend. One night, in the hospital, my Dad thought he'd heard her. And we'd go visit his hospital neighbor. It was someone else. But even they'd strike up a friendship. And he'd provide this twenty something, with some inspiration.

I think about those people a lot. I'd wonder, how we would have dealt, with my Dad's illness, without that group. After my Dad's death, I'd be asked back. To talk about what I'd gone through. As a caregiver. How I was dealing, with losing my Dad. And just, how I got through the days.

Lots of people, thought I was crazy. Going back. To that group. To talk. To be supportive. I'd just lost my Dad. Had I healed enough? I don't know what the right answer was. But for me, it was the right time. It helped me, in my own healing.

Those people had been there for me. And my Mom. And my Dad...when he'd let them in. It was my time, to be there for them. And it truly helped me, to heal. To pick up the pieces, and start moving forward. These people knew my story, our journey, and what we'd been though. They were walking a similar road. And I didn't have to pretend, to be OK. I could cry. I could be real. I could just be...

 

Since my Dad's death, I've attended a couple of support groups. And coming from a caregiver, I would recommend a Survivor's Group. Or a group, just for Caregivers. I've seen the need for it. Personally. And from others, who have reached out to me.

If there was anything I could tell the people at Presbyterian, it would be to start a Caregiver or Survivor Support Group. It's needed. And would be a valuable asset, to so many. It's that "after care," that is necessary. For so many people.

Support Groups, are for people, walking similar journeys. It's a place, where you don't have to worry about explaining yourself. If you've walked a similar journey, you'll understand what I mean. How many times have you been frustrated by family and friends? That just don't get it. You explain, you give details, you provide updates...and no one seems to care.

Many times, the caregiver is expected to be the strong  one. Never crying. Or letting things get to you. Then one day, you feel yourself cracking....

That is what support groups are about. Finally dealing with all those things. The things no one wants to talk about. Or deal with. Or make real...

I found, that we got so much hope, from attending our support group. Not hope, in terms of a cure. But hope, that we would all be OK. That we could take care of my Dad. My Dad, got that hope too. That after he was gone, we'd have people, that understood our situation. That would comfort us. And help us, on our journey.

And at the end of the day, our support group provided so much of that. For all of us. They made us feel, like we mattered. Our journey mattered. Our struggles, were real. I want to be that, for someone else. That is why, I go back. Every single time, that they ask. I go back.

In fact, I'd be willing to start a Support Group for Survivors and Caregivers. It's so important. And with some help, I think it would be a success. It's something that would benefit so many! And I think it's something, that no one thinks about. Until they need it.

After my Dad's passing, I didn't find a Support Group right away. I heard something on the radio one day, and I turned to a group. That was based out of a church. And it, became my saving grace. A place, where I could deal with my grief. I didn't have to be strong. Or tough. Or the leader. I could just be.

It was roughly 6 months, after my Dad's passing. My Mom was back to work. And I could go alone. And just deal. Some days, were full of tears. Some days, were about talking. Some were about listening. All were about dealing. And working through the tough stuff.

It was finally a place, were I could just be. I could deal with the anger, the heartbreak, the loneliness, the uncertainty, and the loss. It was a place, were I could just be. I could fall apart. And no one judged me. I found my strength there. In that room. With strangers. I found myself again.

With family and friends, you always hold back. Just a little. You don't want people to know, that you are broken. Inside and out. And you put up walls. You stop being, true to yourself. But in the Support Groups I was in, I could just be. I could be broken, hopeless, and afraid. And I could put myself back together, again. No one ever judged. Ever!

Do be afraid of Support Groups. You will learn how to deal, with all your emotions. You meet similar people. Who will be supportive, of your situation. You will learn, that there are people, who will support you, no matter what you've been through.

It's a place, were you can be real. And get real. With yourself. You are able to put the pieces back together again. You learn tools, that help you to deal with your days. And your emotions. And you  realize, you will be OK.

 

The fact that I was able, to be a part of a support group, helped to prepare me. For the next part of my journey. You don't always know what is coming. But this was a way, to prepare me, for the hard days, that were ahead of me.

I'm so grateful, to the staff at Presbyterian,. That started us, on this journey. They held our hands. Helped put our hearts, back into place. And allowed us, the time and space, to grieve. They helped us grow. And eventually, they helped us, put the pieces back together again.

That's why support groups are so important. It's those things, that allow us to move forward. That help us, to put the feelings, emotions, and grief...in a better place. You learn who you are. And how to deal. It helps you, to get through the day. And the week. Then the month. And before you know it, you will make it to a year. ❤❤❤

Our Gentle Doctor

My Dad received all of his care, from one hospital. Different locations. Many doctors. More nurses, than I can sit and talk about. But one hospital. It was the best decision, we could have ever made.

Not only did it make it easier for us. It kept all of my Dad's doctors, on the same page. Everyone had access, to everything, all the time. If we were in the hospital, our doctors were very easy, to get in touch with. All our care, came from the same place. Including, our Homecare.

Along the way, you meet different people. In the Presbyterian organization, they work so well, as a team. Working together, for the patient. Mapping out, how your care will look. Taking every person's opinion, into consideration. And it works really well.

In the Fall of 2014, my Dad was scheduled to potentially have his stoma reversed. Chemo, was making him a little too weak, for the doctors liking. So there was a break, that was taken, halfway through his scheduled 16 treatments.

During this time, he'd receive radiation. And we heard all sorts of horror stories. But my Dad was optimistic. As always. He was ready, to attack this beast, growing inside him. We had an appointment, with the radiation team. And that is where we'd meet Dr. Garg.

An amazingly kind soul. His staff was truly, some of the kindest, that I've ever met! They made us feel so comfortable. And if you've ever had to have radiation, you know the initial appointment, can be rather lengthy.

We went in. The nurses were so kind, and helpful. Explaining everything in great detail. Allowing me, to help as much as possible. They knew, my Dad was most comfortable, when I was with him. After I'd help them, to get him settled in, another nurse, would walk me back to a conference room. Where I could wait. In comfort. With something to drink, and snack on.

I'd meet Dr. Garg first. While my Dad was being "marked" for his treatments. He'd explain to me, what was going to happen. What our schedule would look like. What I could expect. What I should look for, in terms of side effects. And assured me, he'd be right by our sides, the entire time.

Then he'd meet with my Dad and I. And explain everything, in great detail. Making sure, my Dad understood, everything he was saying. Talking to him, and reassuring him. He sat right in front of my Dad, held his hands, and assured him it was going to be OK.

Radiation, was very beneficial to my Dad. He didn't have any side effects. Nothing that they'd warned us about. Or anything we'd heard, from other patients. Dr. Garg, kept his word. And would be by our sides, the entire time. I don't think, there was ever a treatment, where he didn't come and talk to me. To let me know, how things were going.

My Dad was rather weak. By Fall 2014, he'd been through so much. And to go to his doctors' appointments, we'd take his wheelchair. I'd help him, to undress, and put on his hospital gown, before every treatment. The nurses would bring my Dad coffee. And once they'd taken him back, for his treatment, they'd come make sure I was OK.

It really made the entire experience, a positive one. But Dr. Garg, would be the one, that would bring us comfort. He'd talk us through, our entire treatment schedule. He'd answer all of our questions. He'd give me updates. Without me, having to track him down. He would bring me, the information, I'd need to know.

At my Dad's last appointment, he'd have a seizure. The staff was amazing! Dr. Garg, was right there, by our sides. Assuring me, that my Dad was OK. Which I knew. He'd had seizures, all my life. But Dr. Garg, wouldn't leave our side. He'd want to call an ambulance. So we could transport my Dad, from the Radiation Center, to the main hospital. I'd assure him, it would be best, if I'd take my Dad. He would be very disoriented, from the seizure. And would need me, by his side, when he started to "wake up" from the fog.

Dr. Garg, and 2 of his nurses, helped me get my Dad into our van. They'd secure him. And they'd get my cell phone number. Sure enough, they'd call ahead to the hospital for me. And they'd check in, with me, multiple times that afternoon. I'd receive a call from Dr. Garg, that evening, making sure we were OK. He knew, what he was reading from the charts. But he wanted to make sure we were OK. That we were receiving the care, that we should.

It was amazing! Months later, in February 2015, Dr. Garg would be the oncologist working at the hospital. On the weekend of my Dad's birthday. He would do everything he could, to make sure my Dad was comfortable. That we had everything we needed. And after talking to him, about a Surprise Birthday party, I had planned...he assured me, my Dad would be able to attend.

Dr. Garg, was just one of those doctors, that made you feel comfortable. He explained every single detail, to you. And always asked, if we had questions. When he could, he'd make things easier for us. Trying to provide our family, with everything we needed. At the very moment, we needed it.

And the amount of care, respect, and tenderness...that he showed my Dad. It is the thing, I will never forget. We were very blessed, with our medical team. And it's doctors, like Dr. Garg, that made the experience a little easier. We knew, we had a team behind us. And that no matter what, they were fighting for my Dad. To extend his life. To provide comfort. And to make sure, we were all OK.

I'm very grateful to Dr. Garg. And the care he provided. Not just the medical care. But the personal care, he gave my Dad. Even on my Dad's roughest days, he was an amazing doctor. Knowing, that it was the pain, and not my Dad...that was taking over. Thank You Dr. Garg! From the bottom of my heart. My family, appreciates everything you did for my Dad! ❤❤❤

She Encouraged Our Journey

When I think about physical therapy, and my Dad, I almost want to laugh. He wanted nothing to do, with physical therapy. But in the Spring of 2014, we were put on PT at home. And he'd continue it, until February 2015.

It would be one of those things, that would really bother my Dad. Physical Therapy. But honestly, it was so necessary for him. It was something he needed, much more than he thought, he did. The night before, our first at home session, my Dad would devise a plan. He thought, he could outsmart the physical therapist.

That is, until he met Lucy. She was this petite lady. That had the warmest spirit. The sweetest voice. And the most gentle way, of doing things. During that first session, my Dad would try hard. To prove to her, that he didn't need any help. But it quickly became apparent, to all of us, he need the help.

 

I'll ALWAYS regret, not getting a picture of the two of them.  After that first session, there would be a definite bond. A sense of friendship. And for my Dad, lots of trust. You see, Lucy became more than a physical therapist. She was my Dad's cheerleader. And encourager.

 

When my Dad didn't feel like doing his exercises, I'd remind him of Lucy's next visit. We usually had two a week. But we were supposed to do his exercises, every single day. My Dad would give me this look, every single time, he saw me coming with Lucy's notes. But quickly, he realized, those exercises were helping. He was getting a little stronger. With each visit. And we would begin, doing his exercises, two and three times a day.

 



 

 Lucy was never pushy. She was never rude. Or in a rush. She only had kind words. Encouragement. And my Dad's well being, on her mind. She encouraged me, to do the exercises with my Dad. She taught me things, that would benefit both my Dad and I. How to help him, to get around. How to strengthen his muscles. And keep his spirit up.

You see, Lucy always knew about our battle. She knew about the cancer. I know, she understood the situation. And my Dad's pride. She understood, that life was difficult for us. But she encouraged us. All of us. And helped us, to see the best in life.

It was not always easy. There were many set backs. In my Dad's recovery. In his strength. In the things he was dealing with. But Lucy was a cheerleader. She helped us all, to see the good, that was in our life.

And when we'd need help, getting safety equipment, it was Lucy who would help out. She'd make calls to people. She would write referrals. And she'd also give us options. For places, we might look, for supplies. Lucy became someone, I could trust.

My Dad would stay true to Lucy. You see, every time we would go to the hospital and return home, we'd get a different physical therapist. The first time it happened, he got in a fight with our new PT person. Then he'd tell me, to call and get Lucy. The second time it happened, he told them to leave his property. And again, we'd call Lucy. The third time it happened, he told the HomeCare people, he didn't need PT. Then they sent Lucy.

It wasn't that my Dad, didn't want help. It was the trust, that Lucy and he, had developed. It was a bit of history. And lots of understanding. He knew, she didn't judge him. And that she had his best interest, in mind. All of the time!

It was that encouragement, that kept my Dad going. I'll forever be grateful, to Lucy. The lady that walked us through bed exercises. Then sitting exercises. And eventually, standing exercises. She was the lady, that made sure my Dad was safe at home. And who would take walks with us, through our neighborhood.

And honestly, it was the patience she had. The understanding. And the trust, that we all developed. Lucy shared our religious beliefs. And would often times, pray for us. I can't tell you, how much that meant. But she also understood our values. And our sense of community. Lucy shared many things with us. And it meant, that our bond was incredibly strong.

I will forever be grateful, to Lucy. For her professionalism, her kindness, her care, her compassion,  and all of her encouragement. It really did help, my Dad. In so many ways. To extend, the "good days," that he had. It added to his overall health. And allowed us, more time together. In the end, my Dad looked forward to PT. And his visits from Lucy. He really enjoyed the challenges, that she would present him with. ❤❤❤