I am grateful already for this community. All of this really can be alienating with friends who are not living it. Background: Both parents in poor health. Dad: MS for 20+ years, falls, refusal to see health care providers, Feb 2018 heart attack. Flu, pneumonia, ICU, rehab, back home with caregivers and in home PT. Mom: Progressive Supranuclear Palsy, Bad fall 7 years ago, broke neck and back, flu resulted in hospital stay and 2 long rehab stays. Back home with same care givers and rehab. Both are wheelchair bound, transfer only. Talked to them for years about assisted living- they got angry and said it was “God’s will” they be in the house they are in. They are 2 hours away from me. Found an assisted living that will work, but only enough money to last about 2 years.....to help spend down to Medicaid- but when they move down here to be closer to me (when they didn’t do that before because they did not want to “burden me”) And it will all be up to me. Every whim, every rant, every appointment... I am currently no evidence of disease from aggressive breast cancer. All the running for them now, my monstrous debt- is overwhelming, and I have help from their friends. I can’t work full time because of what the hard chemos did to my body. And yes- it’s only me. No other family. I helped to take care of my mom’s mom before I got sick, and was glad I was able to. My mom was not in place to help her- her choice. They know my circumstances, and don’t care. They want to know what I am going to do for them. I have no other option but to do it. I know I sound resentful and ugly. I just want to run away. I don’t want to fix all their choices and messes.
To the poster whose Mom has PSP. If she is already in a wheelchair how long, realistically, could she remain in AL? Mom or Dad honestly? My Mom had PSP that’s why I ask.
Would moving them to a NH with Medicare beds, private paying (spend down), then transitioning to Medicaid beds solve a lot of the logistics, Dr Appts, ice cream, your running around using energy you don’t have?
There are facilities that have IL, AL, and NH, areas under one roof? Anything like that available in your area?
[mutters: be careful what you wish for...]
And MURPHY - !
Your parents' needs, your parents' carefully specified conditions and difficulties, but your... "cancer stuff"???
What, silly old you, can't just shrug off a bit of "cancer stuff"?
Oi. What you have been through IS a big deal. Who told you that if it's happening to you it can't be anything much to make a fuss about?
You have real needs too. Take them more seriously.
If you can't do that for your own sake, sigh, what about you do it because otherwise you won't be there for your parents on account of you will break? And then where will they be?
I feel as an only child I had to be a grown up earlier than most people. It was just expected. People think we are spoiled. Maybe in some ways yes but it's not always easy, for sure!
My parents have lived down the street from me during this whole bizarre decade. I moved here first and then they followed a few years later. How I wish they hadn't moved into my nice quite neighborhood and brought so much drama to my back door. I didn't know what a mess they had become until they moved so close. I've fanatasized many times about blowing out of town and never coming back!!
You sound like a great and caring daughter but please try to figure out what you want to do with the rest of YOUR life and take steps to make sure you don't sacrifice your own future. Is that what the younger version of your parents would have wanted?
Yes- only kids. 🙂
Sure wish I had siblings now.
Even just to talk to about all this.
You sound very healthy with the boundary setting; something I need continued work on.
I have been the family “go to”
“Run in” and “rescue person”
For most of my life.
I even remember dressing my grandfather’s leg wounds at age 7 when other adults could not do it.
I used to pride myself on being the dependable, lay self aside for all person.... since the cancer stuff, I don’t have it in me.
I have enough gumption to just get through my day.
Do a score chart. Seriously. Award items Importance Points (IP) and Feasibility Points (FP). Then any command or request has to score above your personal threshold.
Importance Points 1 - 10, with 1 indicating don't waste my time and 10 indicating absolutely vital.
Feasibility Points 1- 10, with 1 indicating a serious pain in the behind and 10 indicating no trouble, it'll be a pleasure.
So. E.g. make appointment to see neurologist. IP 8 x FP 2 (say you're at work at the time he asks) = Boundary Score (not abbreviating that! :)) of 16. Let's say the cut-off point is 25, for the sake of simplicity. So - no. Not doing that now. Come lunch time, revisit. IP 8 x FP 7, because quite honestly you'd rather sit in the park and feed the ducks but it isn't a problem to call the neurologist instead. Boundary Score rises to 56, important and doable and well over your threshold, so you do it.
Obviously it's always hypothetical. Obviously there will be days when you're feeling less in the mood to argue, or he's sounding especially pitiable, when you adjust or abandon your scoring system. But just working it all through a) is a great venting exercise and b) really might help identify:
• tasks you might rightly feel insult your intelligence (c.f. Dorker's doggy diaper errands),
• tasks you can delegate, and
• tasks that in fact, if only you pick the right time for them, are a pleasure.
I will try to look up an elder care attorney.
That may be of great help.
They have someone there on premises at least 12 hours day/night for fall hazard. These “sitters” do light help- get drinks, fold laundry, get crackers.
But are mostly there for fall precautions.
Home health nurse and PT are coming 2 times a week.
I so wish it was only one of them in great need, and not both.
But wishes are not mine to control. 🙂
Thank you for your kindness.
Grateful for you. Please live in my pocket for just a bit. 🙂
Or get me a secret service earpiece to be able to hear you.
(Still contemplating running away)
It's difficult to fathom how some seniors are bedbound, but, claim that they can manage alone in their home. They seem to have a warped sense of reality.( I realize your parents have help, but, having friends drop by is not the same as having around the clock care.) When it comes to that, it might be time for others to take charge. I'd seek legal advice from an Elder Law attorney in their jurisdiction, so you know the options and how having someone else appointed to make appropriate decisions on their behalf. And if it's premature, then, you still have the info and who to call when the time comes.
Often the parent becomes like the child and has to be protected, against their own poor judgment. I'd try to not allow them making poor decisions cause you harm. The only way to avoid that is for you to make a stand. It's entirely appropriate, imo.
But do think it through. At the moment, you are starting the thought process, like so...
Their needs are so great... handle it and fix it... there isn't anyone else....
... but then you screech to a halt and don't follow through.
They have needs. If you don't meet them, then... what? What will happen if you don't make the appointment? If you don't get them their magic tissues?
You have to follow it through, looking at what would happen if, for some reason, You Were Not There.
Their finances would get handled. The people who bill them would make sure of it, believe me!
They would be fed, clothed, housed, medicated and appropriately treated. There are professional people whose jobs these things are.
They will not use home health agencies, hmm? Well, that may be partly because they had one bad experience. But face it, please: it is *also* partly because you are offering them a free, agreeable alternative. You are making that choice possible.
Your father has to be calmed down. Sure, for his sake and that of those around him. But not necessarily by you. What happens if you're not there? You think he'll rant on and on until he melts? No, he won't. He'll stop when he gets bored, or when some other person intervenes. The point is:
IT DOESN'T HAVE TO BE YOU.
They do have people coming in and sitting with them- friends there in the neighborhood and one is a retired, able bodied nurse. I don’t think mom and dad realize how much everyone had to do to keep them in the status quo they have-
They have meals, people coming and going to the store, picking up prescriptions, dr appointments, etc.
When they move closer to me in the assisted living ( if they are accepted ) all those “runners and doers” will be gone.
My aunt asked them before my cancer diagnosis “how long do you think this is doable for Holli?” They got mad.
I am just grateful for all of you, and your wisdom.... even though I wish you all did not have first hand knowledge of all this stuff.
I have read many of your wise comments before on the board.
You bring up points for me to “chew”.
I really can’t run.
“It” is the load. The decisions. The Running. The care. The financial stuff for them, and “it”- giving up any sense of trying to take care of myself.
I am their only child, and only family member other than an aunt they see once a year.
I have had issues with boundaries with them; and their needs and perceived needs are so great. I am sure the loss of control is hard; but it was all coming and they denied it all.
Now, my father is like, “handle it and fix it fast to my liking”.
He used to be a kind, thoughtful person.
He has become disdainful, and “gaslights” out of nowhere, leaving me breathless.
You could say, “Buritos are nice and delicious!” And he will respond in anger how stupid Mexicans are, the border issues, etc. 😳 whatever he is ranting about has to be aborted so he will calm down.
Even in facilities- they both have demands and needs- special tissues, ice cream, seat cushions, eye drops, etc.
I am sorry to sound like I am complaining.
Frazzledmomma- it sounds like you are stretched thin. I feel badly even sharing and complaining with all of you doing the care in your homes.
I wish there were more options to outside care where they are, but there is not, and they have also burned bridges- they will not use home health agencies, bec they had a bad experience.
Just yesterday, my father “threw out” the occupational therapist that was working with them.
I want to scream.
You say they are wheelchair bound with transfer only. So, do they have around the clock people helping them transfer to bed and toilet? If not, how can that be safe? In case of fire, how would they escape the house? I might meet with a professional who can assess if they are safe living the way they insist on living. If not, then, I'd seek a consult from an Elder Law attorney about what your options are. At least, you will know where you stand and what you could do, if necessary. To me, being well informed, helps ease my mind.
Being all stressed out is not good for you. I'd gather my information and set my goals. Letting them just lead the way if they are not using proper judgment could be very stressful. And you don't need stress with your history. Stress is hard on the body. I had it short term, but, very intensely and I suffered a lot from it. I wouldn't let them making poor decisions ruin your health.
If a doctor thinks they are not safe in their current situation, he can report it to APS for an investigation. That's also an option. And you just let others step in and handle it. You can be there for support, but, not have all that stress in dealing with this.
Suppose you do run. What then?
If you don't run, what will be the consequences for a) you and b) your parents?
If you do run, what will be the consequences for a) you and b) your parents?
Write them all down. If x, then a...z. If y, then a... z.
The thing is. Set aside the What You Ought To Do. When you look closely at what difference any potential sacrifice will make to your parents' lives, will it really be good enough and significant enough to be worth it?
For example. You say, your parents want to know what you are going to do for them. You have no other option but to do "it."
What's the "it"? What are you going to do for them that cannot be done, and possibly better, and certainly at less personal emotional cost, by other people?