My Dad's health has been declining with a recurrence of lung cancer.
After a biopsy procedure last week, he hasn't been able to gain strength and has had a number of complications. He came home from the hospital and although we recommended he return, he refused to go back. We have been unable to get him proper care at home and it has been taking too long to get home care set up - altogether very stressful for me and my mom.
He went back to the ER today after a week of physical decline at home - on advice of his PCP. My Mom stayed with him in the ER as long as she could (with her own exhaustion and health issues) but decided to leave before he was admitted.
I am feeling extremely guilty that I didn't step up to go over tonight, however, I am somewhat overwhelmed and anxious about his health. It is very hard to sit and stare at a loved one in the hospital without feeling hopeless.
I was right there last week and helped 100% with his health care and with support - but I would say I'm having a combination of compassion fatigue, shock that this is happening, fear, and many many other feelings. I was also sick myself last week.
I have been uncertain about how to take FMLA or a leave of absence from work. Things are changing every day and I am unsure what to do and because things are moving in so many directions there isn't much time for me to bounce this off of my Mom. Any advice on how to make this decision?
Any advice on how to navigate balancing self care with being their for your most loved people - especially when they need medical advocates in our health care system.
Lastly, how can we find good medical care at home - with the hope that he can recover enough to come home. I know he would rather be cared for at home - he has expressed that wish - but in the past week we were unable to make it happen.
Thank you for any advice and support. This has been an incredibly difficult time for my family.
Did dad's doctor order home health care?
Did you call home health care agencies in your area? What were you told?
I realize it may be mom who was trying to set this up; what has she told you?
If your mom is as old as your dad (86) and you are his PoA then I would accept that you are the main decision-maker and also your dad's Medical Representative (a HIPAA form that you should request at the clinic and hospital that your dad fills out with your name). Your mom leaving the hospital before your dad was admitted is a fairly concerning decision and I'm wondering if she doesn't have some cognitive issues herself (and I realize you said she was exhausted, but still...).
Do you live local to your parents? What size company do you work for? If it's a very small employer you will need to have a discussion with the main decision-maker; if a larger business or corporation I would contact HR dept to ask questions about FMLA.
Pace yourself, and realize you are doing your best in a very difficult situation. Anyone would feel the same way as you do. Keep in mind that at 86 and with recurrence of lung cancer, even A+ 100% top-notch decisions and care your dad may not have a fast or full recovery. This would not be your fault. Perhaps have a conversation about hospice with his doctor. May you receive peace in your heart on this journey.
And don’t feel guilty about not being there overnight with your dad, no one can be with somebody 24 hours in that kind of a situation. You do have to eat sleep and take care of yourself. As well as your mother probably could not have stayed….
As well, I suggest asking the hospital if they have a case worker / social worker you can speak with. Someone who can assist you in ensuring your dad (and mom) are getting what they need AND help you put together a simple plan. Often, these persons have great experience in supporting family members understand all options so they're empowered to make the best decisions for their loved one(s). Also, they can help ensure the medical staff understands your (dad's) concerns and unique health nuances, like perhaps the need for more attentive care because he's quick to want to go home.
Such a person helped my Dad and me about 5 years ago when my mom had emergency surgery. After surgery, she struggled with breathing, thinking clearly due to the anesthesia staying in her system for a number of days and early dementia, was a fall risk before surgery, etc. The case worker was WONDERFUL at helping us put a plan together, communicating essentials to the medical staff, and helped us ensure Mom got what she needed. Small changes were made to improve her comfort and recovery :)
You let him sleep (as best he could). You let the staff to their job.
I don't personally need to stay overnight with LOs in hospital.
Not as a visitor - as I don't find watching people does any good (me or them). Not from staff's point of view, certainly never when I have been the patient!
Exceptions would be; end of life is imminent (& family wish to be present), major decisions need to be made (urgently & in person/signed for) or high delerium/confusion (& family being present helps alleviate & improves safety).
I suspect many hospital trips contributes to compassion fatigue in family members.
I'd bet lack of quality sleep & irregular meals increases physical stress on most people. I KNOW the effects on me are reduced resilience, increased moodiness, irritability - getting 'emotional'. I exhaust easily so need to control my up time / stress time / down time balance.
This is a big life event. Illness & dying are part of the life-cycle too. It's hard. Very hard. But you want to do it. Live it. Then come out the other side.
Time off work would be one less pull on your energy at this time. As you keep you & your Mother afloat. As you gently engage many others to help (staff, social workers, hospice?). While your Father changes into different waters.
If you don't want to call on hospice, for whatever reason, call a caregiving agency and hire someone to come into the home for X amount of hours each day to care for dad. That will give the family some respite time for self-care, which is very important. You can even ask for in-home care referrals on this website; on the right hand side of the page.
I believe in your situation, everyone loses b/c your father has an incurable disease. You will feel guilty no matter HOW much you do b/c you can't fix him, the situation, or even make his life significantly better, at this stage of the game. You want to help him, but how can you, really? Going to visit him in the hospital is a stressful ordeal; I know. I am at the Mayo Clinic with my DH who's had a liver transplant on April 29th. We are in a different state 1300 miles away and staying in a hotel. He's been in the hospital, admitted, 3x already. I feel guilty if I don't go see him every day he's there, and stay all day. Which, in reality, is too much for me! I'm 65 years old in July, stressed out to the max, and exhausted to the point where I can't sleep! Why should I go sit there in a hospital room where I have to wear a mask with a plastic strip across the nose area, meaning I can hardly breathe, from 8 am to 8 pm? Logically, it makes no sense, but my heart tells me if I don't, I'm a bad wife. See where I'm going with this? So I don't go all the time and I sure don't go for 12 hours at a pop! I make a deal with myself that I'll go for 4 hours (or whatever) and then LEAVE and come back and sit by the pool with the dog and sweat bullets in the AZ heat. But at least it's ME time. That's my suggestion to you: take ME time for YOU. You can't fix dad, unfortunately, but you can hurt yourself in the process of all this. Don't do that.
This is a journey both you and I are on: an incredibly difficult time of life. Meaning we can't give 100% of ourselves 100% of the time or we'll burn out and be useless in short order. How do we eat an elephant? One bite at a time. Remember that as you make a decision about what you will and won't do, how much time you will spend with dad, and what you will do for yourself as far as self-care goes along the way.
Wishing you the very best of luck with a difficult situation. Sending you a hug and prayer for peace, too.