Profile picture for user Kim Biondo
Kim B. Caregiver

Coping with Reality

How do others do it? My husband had a heart attack end of January 2022 and received an LVAD on Valentines Day. He is home and going through cardiac rehab but because there was a head injury, injury to femoral artery and now he has neuropathy in his feet bad, he can't work again. This was supposed to be MY year to retire but I keep going, paying the mortgage, all the bills and today trying to find a better insurance plan to cover his OUT OF NETWORK hospital and LVAD clinic visits. I am tired of fighting to get his visits, medicine, therapy, etc covered as the only hospital that can see him with the LVAD is out of network. The only other option we have is four hours away and we can't move.

I have to work...... we are just shy of being eligible for medicare due to our age, and I don't make very much money.. I make sure he is fed the right food for his INR readings to stay consistent, but I go days without eating lunch or breakfast at work. We don't have car payments and our vehicles are OLD. We live day to day. He feels like he is burdening me, and when I help him with his dressing changes, he has tremors. Last night i mentioned getting a kitten as his rehab will be over soon and it would give him something to do, he said he doesn't have long to live. This bothers me to the core, and I cried all night. This is my love of 40 years. We have been through hell this year, but he is alive. 

I just don't know how to cope with all of this. I am the strongest person I know but I am weakening daily.

 

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Phillip M.

The first thing you should know is that you're not alone. You're part of a community of thousands who are dealing with the same problems you're dealing with right now. Some have gotten past similar problems and some just haven't gotten to those problems yet, but we're all facing the same problems. Life is tough for everyone. Even the luckiest people in this world face more problems than they should. Ideally, we would all be on a beach or in our happy place without any worries. That's not reality. 

More than just the community of LVAD patients and their supporters, you have the same community around you that you had before your husband had a heart attack. If you ask for help from friends and family you'll be surprised at both who and how many people will step up to help. I have a close group of family and friends whom I have talked with about my challenges. Every day someone from that group does something, without even realizing it, that picks me up and helps me to make it another day. Sometimes it's as simple as sending me a joke or just saying hey. I did have to work on being able to accept that type of help. Early on I was upset when friends and family didn't want to talk about my heart. I would feel sick and since they failed to directly address my illness I felt they didn't care. That's just not true. For the most part, people don't know how to deal with those who are sick. Should they talk about problems or should they help distract? Embrace what you're getting from friends and family. They are worried. They do care. They do want to help. But they have to do that in their own way and you have to be accepting of what they offer even if it doesn't fully make sense to you at the time. 

Find small places for motivation. I love corny motivational videos on YouTube. Sometimes we just have to feed off of others' energy. Jocko Willink has a popular podcast. He's a former Navy SEAL. One of his mantras is the Good Policy. His response to every problem or obstacle is to say "good." If you have a flat tire... good. You get to practice changing a tire. If a package you need is delayed... good. You then get to find a replacement for that need. He explains it a lot better than I do. You can search YouTube for 'Jocko good' and it will come up. I played football when I was younger so those jockish-type locker room speeches always resonate with me, but I'm sure you can find a brand of motivation that helps you. 

Sam Harris has a guided meditation app - Waking Up - for the phone. It does cost $120/year; however, he offers scholarships if you apply and say that you can't pay. I did and within a week had full access to the app. Meditation has helped me a lot. 

As far as money... both hospitals that I have visited have social workers who can help find funding and will know local opportunities for help. There are foundations around the country that can help - for example, the Heart Brothers in Boston provides support to patients around Boston. I wouldn't have gotten through my recent hospital stay without the help of a social worker and her knowledge of local programs that could help out.

Take things one day at a time. Don't worry about obstacles down the road. Focus on today and then deal with tomorrow. You're already doing something positive by reaching out here. Keep pushing forward and you will find that one of the great miracles of life is that there is always hope.

I wish you and your husband the best. 

Phil

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In reply to by Phillip M.

Kim B.

Thank you Phil for your words of comfort and advice. I have reached out to the social worker at the hospital and she is trying to at least help us get our health POA's done. That was another nightmare while my husband was on life support. We never discussed POA's and the what if's. We were just living life carefree and thought we would last forever.

I know there is support out there, that is why i joined this forum, more for my sanity than his. But his mother is 90, mine has alzheimer's and is in a home. My father is 86 and has dementia. not much support there anymore. We have our adult children, that is it. But they have their own lives too. No one prepares us for this stage of life, when we have to still take care of our parents, be there for the kids, and struggle to take care of ourselves. I wish our house was paid off, then at least I could retire and spend what time we have left together. He has never seen parts of the US, I have. I would like to take him places my parents took me as we traveled a lot. But i dream a lot too.

As i changed another dressing for him last night he yelled at me. He never does that. This is frustrating him. I just keep my mouth shut and carry on. It hurts to see him like this. He is a good man with a strong sense of manhood and always prides himself on providing for me and the kids. Now he can't do that and it is so hard to convince him he deserves a rest, and that God does have a plan for him. 

I keep plugging along working. 

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Douglas R.

Your story was breaking my heart.  I had my LVAD and severe heart so close to Valentines Day, both years apart.  I have had my LVAD. almost four years.

My only hope comes from faith.  I was not brought up in the church but found the Lord and researched his claims.  Jesus can help you with comfort through prayer.  He truly was the Son of God.  I wish yo peace and comfort during your difficult times.  

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In reply to by Douglas R.

Kim B.

Thank you Douglas for your words of encouragement. We do pray. I do a lot. Trying to convince a stubborn Sicilian that God has a plan for him is another journey I am on.

I keep plugging along. I wish you well, and I will pray for you. 

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Richard G.

I've read what all of you are saying and I feel for you. I was in the best physical shape of my life despite heart failure (EF of 22%) only 7 months before my LVAD which plummeted due to getting Covid. It attacked my weakened heart and almost killed me in February (2022). I can't really blame my doctor for painting a rosy picture of life with an LVAD because if I'd known how long the recovery would take and what I'd have to go through it would have been a harder decision. 9 months post LVAD I'm still improving but I'm only 2/3 back to where I was last year. I'm talking about strength, fitness, a myriad of post LVAD issues that are not life threatening but extremely annoying like numb feet, vericose veins all over my legs and feet, a general lack of energy and need for excessive sleep. Anyone who has other than a dog (he's pretty awesome as they go) to care for them has it easier than someone who's spouse (is an RN) divorced them because they didn't want to deal with anything slowing them down. And though I don't have any caregivers, it has to be more challenging to care deeply for someone and be out of control to make them better despite trying everything possible. Everyone on this board has had more than their share of health and life challenges. What's helped me through it is a combination of stubbornness and faith. Not many of us lived through the Great Depression but it was an awful time that was temporary fortunately. Yes, we are being challenged to our core. I must have hope and faith that in a year I'll wonder how I made it through the challenges and really glad I did! I hope I'm not making light of anyone's circumstance. Today I'm doing well. A couple weeks ago I was depressed, felt alone and isolated and wondered if all this was worth it. Thank goodness for my relentless stubbornness and, of course, my awesome Yorkie companion! We will all get through this. See it in your mind. The best thing a caregiver can do IMHO is to continue thinking positively as much as possible, don't forget to take care of yourself in the process of giving, giving, giving and keep reminding your (spouse, patient, relative, etc.) that the future is bright next year when they are recovered - don't get stuck in the challenges of today. SO many people on mylvad.com have made it through similar challenges you and yours are experiencing and now live far better lives than those who chose against medical intervention. I would not be writing today if I had not chosen the LVAD. I'm not deeply religious, but once I realized that I wasn't in control and adopted "God has a plan" I think it has helped me internalize that I have to let go of things I can't control. 

I wish you all the very best. Often times it is your words on this post that help me when I'm feeling down. I thank you... 

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In reply to by Richard G.

Kim B.

There should be an easy answer. Reach out to anyone! Even a stranger will listen. I am sad that you are alone, but you are not. I am glad you have a Yorkie buddy. We lost our cats last year, and he had said then we will try to get another one, but then all this happened with his heart attack. The focus is on him. I struggle every day to change his dressing ( I am NOT a nurse, cannot stand the sight of blood or needles) and believe me its a struggle. But I put my mindset for his care. That is the only way i can get through it. When he first came home with the Piccline and I had to give him three 'injections' every day I thought I would get sick each time. But I kept telling myself he is alive and depends on me. 

He yelled at me last night while i changed his dressing. Didn't mean to. But he is frustrated now. He can't provide and help financially and this bothers him deeply. He is a good man and has always provided. We both did. We only have our adult children for support, but they have their careers and families too. His mom is 90 and frail and my parents have alzheimers and dimentia with my mom not even knowing who i am. There were times when i wanted to call her from the ICU and say hey where are you mom, I need u. 

When i get to my lowest point, I put all of my thoughts into God's hands and ask him to please lighten my load, help me keep the bills paid so we don't lose our home, and keep me healthy enough to take care of him. Then I close my eyes, cry a bit and thank HIM for allowing me to have more time with my husband. We don't even have grandchildren yet.

Richard, i don't know where you live, or if you still drive??? but my husband started going to the local Senior Center for lunch everyday and loves going for the friends he is making. He can't wait to go every day and laughs a lot. This is his best medicine right now as he gets stronger. If you can't get to a place like that are there resources by you, maybe a church or even a meals on wheels where someone can visit you every day??? Just to talk? 

I am praying for you sir. I hope you reach out. Don't be alone. Please. I DON"T KNOW YOU AND I CARE.