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becoming a primary caregiver
I'm in my late 20s and in the middle of grad school. My dad's heart failure has worsened a lot in the last month, and I have become his primary caregiver. To do this, I have taken some unpaid family leave from school (graduate student contracts are not great). He was just discharged from the CCU and I want to help him as best I can. I am hoping to get your suggestions and comments about what has helped you in your journey as a primary caregiver for an elderly cardiac patient.
Thanks in advance.
AHAASAKatie, August 26, 2019 9:18am EST
Good morning, I am so sorry that you both are having to experience this. Being a caregiver is hard work and I am glad you are here for us to support you. I can share the information we have on caregiving with you. And, I look forward to hearing what our members have to share as well. Best Katie
JamesPL, August 26, 2019 11:06am EST
Being a caregiver can be challenging and I commend you for putting school aside to help your father. Being there and supporting him is one of the best things you can do for him but I would also consult with his cardiologist to see what he’s allowed to do. Specifically, see if can enroll in a cardiac rehab program. It will help him recover much of his strength. I found it very helpful toward regaining much of my energy.
You could also work toward getting him on a heart friendly diet. You may want to consult with a dietitian for that.
Also encourage him as much as possible. He could be feeling the struggle and any motivation is helpful. Exercise also helps with that.
I wish you both all the best!
JeffB, August 26, 2019 1:40pm EST
Hi and welcome to our group here. I agree with James that what you are doing is one of the hardest things a person can do for a loved one or friend. That said, I would encourage you to take the time you need to make sure you don’t burn yourself out in the process. Find support for yourself as well. Try not to go into thinking you will be able to anticipate everything your father needs or will be able to take care of everything on your own.
Also, depending on what his Dr says, his current condition and response to his recovery be sure and find things that you can delegate to him so that he feels productive, responsible and helpful. Those kinds of things will only help his mood hopefully. When we have a sense of purpose and contribution things seem a little lighter in my experience. It will also help you in that those are things that you will not have to handroll.
Look for opportunities where he might be able to get out in to the community in either local support groups (HF or not), community events that are in line with what he can handle, and possibly some hobbies that ether he did or would be newly interested in to keep him active.
I know these are not magic bullet items, but I hope they help. Katie’s resource is a great one and a fantastic starting point.
Good luck to you both,
AmbassadorC, August 27, 2019 8:02am EST
Good morning and welcome to the support network. Both Jeff and James have given you some great insights that I agree with on all points. What I remember from my journey is that sometimes as patients we are so caught up in our recovery that we often times forget about the feelings of our caregivers. In the beginning your feelings of not being able to accomplish what you used to often times manifests itself in being negative and often times a feeling of being defeated. I share this with you not to alarm you, but to give you some insight if your father falls into that “rut” it is likely not directed at you, but instead something that as patients we tend to go through. As my previous heart warriors mentioned, encouragement and motivation are key. You may also want to talk to the nurses in cardiac rehab for references to any local support groups like Mended Hearts that can assist with being around like minded patients.
Please also encourage him to utilize the patient support network as well as there is a robust community of heart warriors who can assist with any questions or concerns.
Lastly, one thing I learned throughout my journey is that patience is truly a virtue. It was perhaps my biggest struggle while recovering. Every “body” presents differently. I did not understand this going into recovery as I wanted to be healed and move on. Unfortunately, it took longer then expected but eventually I crossed the finish line. Remember to celebrate the small victories.
Keep on fighting one heart beat at a time.
AmbassadorC, August 27, 2019 8:16am EST
In addition to what Katie shared re caregiver resources, I would also like to turn your attention to an app re self management of HF if you have not seen this already. Depending on how tech savvy your father is, this may also be a great reference tool. ❤️
AmbassadorC, August 27, 2019 8:20am EST
Lastly, here are some additional downloads that may be helpful when coordinating Dr visits. I also found that when meeting with drs for follow up care, it’s imporant to know that the more information they are given re symptoms and associated activity, the more productive the appointment can be.
vspttz, August 29, 2019 11:41pm EST
Thanks for the suggestions and resources you've shared everyone!
My dad has been doing better since he left the CCU. His systolic function is still very poor, so it is very likely we'll end up there in the weeks to come. At the moment, I'm making small changes to my apartment to make it more comfortable for him. He now requires oxygen most of the day, and he continues to accumulate fluid in his lungs despite the diuretics given to him. At least now he's able to walk short distances by himself with a cane. I've been keeping a record of his vitals to take to the next doctor visit and to identify what environmental factors affect his heart rate and blood pressure. He's also trying some short guided meditations to relax.
I know that finding proper management for HF and that adapting to my dad's new needs is not going to be easy, but I'm glad to be there for him and I'm sure we will figure things out.