Home again? I don't have the strength to do this anymore.
I have wanted to post for a long time. I will try to make my story as short as possible. Background: Dad has MS, and mother has Progressive Supranuclear Palsy (PSP). Mother's wheelchair bound. Over last 6 years, they decided to stay in their home almost 2 hours from me. Mom has had a few rehab stays, to return home after. she also has breast cancer, tamoxifen keeping it from growing. They have a “friend” they pay to come in a few days, because home health did not work out. Over last 3 weeks, Dad had flu, heart attack, ICU, rehab. Mom went to hospital 2 days after, flu and breathing issues. I traveled every day, as had before, still working when I could. They are now in same rehab. It has been advised they have 24 hour care. I have been scurrying around trying to look at assisted livings, paperwork, etc. They are of sound mind. They informed me last night that they decided they would go back home, that Mom was leaving when Dad was and that they were going to rely on the help of the friend. “ Assisted livings are too expensive “. I am exhausted. I have to work part time, but cannot work full time because of my own health- had aggressive breast cancer and I am NED right now, but having hard time taking care of myself. I am an only child- no other family. I helped to care for my grandmother when she was in hospice and end stage pancreatic cancer. Most family, even her other children and grandchildren scattered. I am glad I could be there, but I am so weary. I just don’t have the strength to do this anymore. Part of me wants to say, if you choose this way again, rely on your neighbors and this “friend”. I love you. I know so many of you are right there in the trenches, every day 24 hours, and May feel I am complaining.... I am sorry if I sound weak. I have found myself wondering if the only way I have an “out” is if my cancer metasticises. That is the only “break” I had.
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You tell the discharge office that you know that they don't want to make an unsafe discharge; you wonder if discharge can send someone in to make it clear to your parents that going home without full time care isn't an option.
This doesn't sound like the plan of someone with a sound mind at all, obtw.
And you DON'T sound weak!!
You can tell them, with as much patience and love as you can muster, that your own health and financial stability are suffering due to the repeated emergencies happening two hours away, and that you can no longer rush over there every time there is a crisis and still take care of yourself as you need. Tell them you will be willing to revisit the topic of assisted living with them whenever they wish - meanwhile, you can be available on a much more limited basis. If doctors or other caregivers try to bully you into showing up, tell them that you are a breast cancer survivor and it's all you can do to take care of yourself as you need. You have the right and obligation to take care of yourself first.
I hope you have seen the end of your own health crisis, and that you don't need a repeat of it to untangle yourself from your parents' emergencies. Wishing you good health, good luck, and fortitude for the struggle with your parents.
You MUST take care of yourself - first because you are important and you deserve your own health and happiness. Secondly, if your folks kill you, where will they be? You can't make them behave sensibly. You can only stand back and wait for a big enough emergency where they will have to change their living arrangements. See them once a week or once every two weeks. Let them figure things out on their own. Don't rush to their side when they make a poor decision and expect you to pick up the pieces. It's tough love, but it's life and death to you. Please continue to keep us up on what's happening. We get it and we care. {{{Hugs}}}
It sounds as if AL is best for your folks. You need to establish firm boundaries and hold to them. Tell folks that you will not compromise your health for their care. Show them the cost to have a caregiver come in daily to do what you do. My guess is they will not like that either. Neighbors will only become resentful if they are relied on for daily needs and will become unreliable..
Who would care for parents if something happens to you? They are being unrealistic but, unfortunately as long as they are competent they make their own decisions on where they live and get to make their own decisions regardless of how bad they are. That is where boundaries, yours and yours alone, come in. Be strong.
Earlier posts gave you great advice. I hope you take it. Set boundaries and don't stand in the way of your parents' decision. Take a deep breath and pat yourself on the back for a well-deserved "I matter."
If they really want to return to their home, okay. But that mustn't stop you telling them that you cannot keep up the punishing schedule they've come to expect; and if they insist on doing this they must make safe practical care arrangements first - ideally have this conversation three-way with the discharge planner, as BB suggests.
And then you visit --- how often could you realistically manage? Once a week? Two or three times a month?
Even if you didn't have health and work considerations, just remember - you suggested a sensible arrangement, they picked this one instead. So if they do have to rely more on the kindness of friends and neighbours it wasn't your idea and it isn't your fault.
Hmm. Re-reading - did they say when they thought the discharge was going to happen? How much more rehab has your father got to go? Don't panic about a plan that might never be more than a theory.
Have you ever expressed how hard it is on you to do what you're doing? Maybe they just don't see how weary you are. Tell them your health is suffering by driving there every day and that you can't do it anymore. I'm sure they would want to impose on you.
It's hard being the only child. I'm right with you. It's all up to us but, when they are of sound mind and won't cooperate, you don't deserve to run your health into the ground for them.