My mom was diagnosed with pulmonary fibrosis last week, has been put on oxygen. We are awaiting results from an echocardiogram to see about possible pulmonary hypertension. She has been my dad's primary caregiver and we do have in home health everyday from 9am-10pm. Mom is very "vigilant" and "instructive" with the caregivers and very particular, often micromanaging. I can understand how hard this all is for her, but she won't take a break. She insists on keeping my dad at home and I am trying to comply with what she decides on for their lives together. I, along with her friends have a meal train going while she adjusts to her "newest reality". I have been taking care of the bills, appointments, etc. for a long while now, but just wonder if she really can sustain this lifestyle. I am wondering also, what the prognosis is for her diagnosis and what quality of life can she expect for the coming years. Anyone have experience with pulmonary fibrosis? She is currently on oxygen level 3 when moving around, 2 while seated or sleeping.
You and friends are providing meals, and you have been paying bills, making appointments, and I'm sure much more. The question is How long can YOU sustain this lifestyle? You're parents are very lucky to have your help. When their needs become more than you can provide for, it's ok for you to say, "I can't do it anymore". Mom likes to manage. Let her make a plan for their care that doesn't include you. Make that your Plan B when you become overwhelmed.
Ensure that they have legal paperwork ready to go in case she has a crisis and gets hospitalized. If he is hospitalized, speak to the social worker if discharge is unsafe.
On your own, visit AL with MC so that you know costs and if they can live together or separate in a facility.
This is a good article. From what I read, its going to be hard for Mom to care for Dad. Because this desease makes it hard for oxygen to get thru the body, I would say there may be some cognitive problems later on if not already. Both may need to be placed.
When the meal train ends, don't jump in to start providing meals for them. Sign them up for Meals on Wheels, and set up a grocery delivery account. Do the research on local facilities with both Assisted Living and Memory Care. Hopefully if the ability to stay in their home becomes too much, you can gently guide your mother toward this path in a way that makes it seem like it was her idea.
One dementia patient is difficult to keep at home, especially if mom insists on micromanaging. As her health continues to worsen, she will not be as capable as she is now. Then you've got two major health declines to manage all at the same time. Neither of them is likely to understand what their insistence on staying home means for you and the supportive friends, who are likely to fall out of the formation as more is required of them.
You're already taking care of bills, etc. etc. It eats into the life that you once had. When there's more etc. etc., your quality of life flies out the window and all you will be able to think about is their care, because it's all up to you to manage. No social life, no trips, nothing but mom dad mom dad mom dad mom. Where is the respite for you?
I was hands-on caregiver (with hired help after a while) for both parents. I kept their business going and saw to appointments, home maintenance, blah blah blah. Everything! It was their wish to stay at home as they quit this life. They had the money to pay for it. But their final illnesses stretched on and on for a total of 5+ years for both. At first I thought it would be okay to do as they wanted, but as time wore on, I realized that I should have realized more; for instance, I never dreamed that their dying would take so long and dominate 5+ years of my life. As a senior citizen myself, I had health and family issues of my own to deal with. It was miserable.
If you are headed down the same path, I wish you luck.
Best of luck to you.
🙏❤️🍀