Father w/Multiple Myeloma, Dementia, and Peripheral Neuropathy

dads_advocate

I have a difficult time asking for help, even as I write this I probably have deleted and retyped 100 times. I'm not even sure where to begin, I know this cancer is incurable, my Dad's future is inevitable. However, to look at it negatively is silly, because we all have the same future and none of us know when not even my father. I have to tell myself this, I have to remain positive because he wants to fight this. My dad has always been the type, mind over matter, fight through the pain, keep going type of man. He has never accepted or understood give up, he is as stubborn as the come. He has said for as long as I can remember he would live to be 100. So when he received the news he had cancer he was devasted, he cried. Why do i compare my dad's future to any of ours without cancer? I have experienced just this. My aunt, who was more than that, more like a mother figure was diagnosed with 4th stage uterine cancer and was given only months to live. She was in her early 50's, talk about hard to accept. her death was a very hard time for me, but it made me who i am today. After she was diagnosed, months later my aunt died of a heart attack, no warning, healthy, active, came as a shock to the entire family. So with a cancer diagnoses and we thought she was the one we were losing, we ended up losing someone else unexpected first, and later my aunt battling cancer. The cancer your loved one may be facing is incurable or in the last stages, but never let them see you have given up hope. bring them humor when they have none, when they are feeling helpless bring in some humor for a laugh. make fun of yourself. I do this all the time with my dad, and the times he loses hope i never ever show him i have lost hope. because truthfully i havent. My hope just lies somewhere else, I have a strong faith in god. I have been there with many friends and family during their passing and witnessed things that cant be explained. I want my dad to be happy, I want him to experience joy, peace, and a life with no pain. I don't believe he has ever had a life where there has been a moment without none of these present. I believe no longer seeking treatment isnt giving up but going home, I say that because im tired of watching him hurt so bad, everyday.

I'm very close with my dad, so are my kids. He has taught me to fight for what you believe in, what you care for. Not to give up just because others are judging you, I definetly have my dad's passion to fight for what i believe in, and I have but now im starting to lose my grip.

My parents have been married for over 38 years, i have 3 sisters and together we make up many grandchildren and great grandchildren. Not to mention aunts, uncles, my dad's brother's, sister, etc. you understand. Among all this family guess who has been involved or helped since his diagnoses consistently? ME. My children are very young, they can't even be with my dad alone due to his short temper. He can't handle sudden movements, noise.

Two of my sisters live extrememly close by, they don't come by at all. My oldest sister lives over an hour away. She calls him regularly, and visits about twice a month. He has one brother who visits sporadicly, my mother she leaves the house early in the morning everyday before he wakes up and don't come back till late afternoon. they are more like roommates. I hadn't returned to work because I wanted to stay with him as much as possible. I can't understand why anyone hasn't taken advantage of this time. We have lost so many people in our family back to back, why aren't they spending time with him? Some are blaming it on his mood, behavior, remarks. I told them to do research on all his diagnoses the side affects and educate themselves. My dad has cried to me, told me he doesn't mean to lash out he just hurts so bad, and then the empty promises people make to him hurts, he only has me. Family making this about them, it pisses me off! So he can be hard to be around, get over it! You aren't the one having to face the fact that you have an incurable cancer, that if you did in fact have remission it will only be short lived. That you will never be able to stop treatments, that the constant pain is everyday, of everynight, a new sympton, but goodness lets make this about u!

My family removing themselves causes even more issues for my dad, causes my dad's mental health to decline. Do they even realize the affect it has on his overall health? Every appt I have been to where they check his mental health, his score is extremely low. My dad is disgusted with himself, he feels defeated, unhappy with who he is now, and accepting the body now compared to the body before is an everyday fight for him. Now, my dad is 73 years old. But the man was as active as most 20 something year olds. He looked like he was in his 50's, and yes he did have the neuropathy pain before but he pushed through it was treated and monitored and has always taken several vitamins a day. My dad was an avid ball player and bowling player until his late 40's and even after that he still continued to maintain an active lifestyle. So today's life is extremely hard to accept, especially because he has had a few scares along the way. But looking back all those scares we were told was nothing were all actual symptons of signs of Multiple Myeloma. Such as, fatty liver and high enzymes many years ago, their answer they didn't know why. Few years ago they also found spots on his lung, they told him this was nothing to worry himself over. Was not cancer but they would continue to check it. There were other signs but again was never picked up as having this cancer.

I apologize for the rant, i guess its because not only do i feel like my father is being pushed to the side by family but by medical staff too. My dad is a Vietnam Veteran, who gets all his medical care through the VA. We have went through so much red tape, its unreal. As of now, my dad is swollen from arms clear to his toes and they cannot provide an answer as to why. Also, we have not been given an actual stage of cancer. If it wasn't for a local hospital we would have never known my dad had a tumor in his shoulder. Its been a very long road, being tossed around to several several different doctors, before making it to the actual cancer doctor. A whole lot of money could have been saved right there, one doctor even asked my dad why he was sent to him and not an oncologist. I was so aggravated as to why time was being wasted. A pet scan had already been performed!

Now after chemo, infusions, and other meds, through a cancer specialist the VA had sent him to because they could not provide the care he now requires a stem cell transplant. There is a huge problem. ANOTHER RED TAPE. The VA who sent him to this specialist, who also was aware of the care required to treat this cancer will not cover this transplant here at his local doctor unless my dad goes on a plane and fly him out of state and another relative where he will receive treatment at that facility where it will be covered for a 3 week once a day up to 4 hours a day transfusion all inpatient. They provide stay for relative as well. I guess that is cheaper than covering the transplant local for my father with the doctor the transferred him to to begin with his care?  The stem cell transplant requires a extensive check up prior to transplant. no infections, you can't be around anyone who has or is sick, and they want him to board a plane? he also requires a full time caregiver which is not covered by the VA Caregiver Act which was placed to help families care for veterans at home only covers veterans after 911. Any veterans who served in war prior to 911 such as my father are not covered by this bill. Which is a very high amount especially with vietnam and WWII vets aging falling ill, passing, several Vietnam Vets are also fading from after affects of agent orange like my father.

 after learning his transplant wouldnt be covered by the doctor he had been seeing, My dad was in panic mode, he was frantic trying to find ways to cover the cost of the transplant. now, a week later, he reminds me of the marshmellow man from ghostbusters. I feel like I'm fighting for my dad alone, i feel like i'm the only one with common sense, who hasn't made this about me. I feel like he feels alone in this except for the time he is with me and now i have to leave him and work and i worry for him.

Because there has been so much loss in such a short amount of time, I have had to look at life differently. Reevaluate how I look at myself and life each day. Because of this, I don't feel sad for my dad because he will one day be gone, I feel sad because while he is here its as if he is already treated he no longer lives. Not only this, but his Quality of Care means so much to me because Quality of Care can make a difference in your all around health. He gets pissed cause he hurts, and sometimes I feel like every avenue crossed is another brick wall in my face. This is why so many people just ride out in life and say screw it. I'm starting to think maybe that is the way to be.

I have no one to talk too, no one to vent too. My aunt and my dad was my go too. Cancer already took my aunt, and now cancer is taking my dad. Once he is gone It will be me and my kids. I feel like i'm drowning at times and I can't find anyway to get oxygen. There is no one in my family that is supportive at all, but if they are going through difficult times they expect me to be there right away for them. Even though i don't receive the same support during difficult times im still there for them, listen, because i know what its like to not have that. but now, ive grown tired of carrying the load, of being there for everyone. its weighing down and i cant maintain everyone my kids my father and myself.

i read on a cancer site, where a patient battling cancer had wrote that most of her friends and family had left her after her diagnosis.

then i found this site.

so, maybe eventually i will get some answers, and not feel so alone n this.

 

 

 

Catholic

Let me start with the last

Let me start with the last paragraph first.  You wrote

"i read on a cancer site, where a patient battling cancer had wrote that most of her friends and family had left her after her diagnosis."

and I kinda of take exception to that comment.  If anything (or at least in my opinion), its the patient battling cancer who withdraws and leaves friends and family.  And trying to get that person to be happy and get them off the couch and on their feet is the job of the caregiver and its a tough job because the person battling cancer is angry and stubborn. 

And then you say

"Even though i don't receive the same support during difficult times im still there for them, listen, because i know what its like to not have that. but now, ive grown tired of carrying the load, of being there for everyone. its weighing down and i cant maintain everyone my kids my father and myself."

And I agree 100%.  You sound burned out being the caregiver.  You have to take a break.  Taking care of someone is no fun and lots of work and for me at least, it hasnt been rewarding at all.  You have to find ways to take breaks in your day and start taking care of yourself.

Vent on this forum anytime.