Any and all constructive advice, suggestions, etc ate welcome.
Trying to understand what I'm seeing from my father and what to do. I've explained below some of the situation and then posed questions.
At times he's childlike, irritable, demanding, quick to agitation, is mean to my mom, lacks understanding (or appears to) of what he's doing.
Then he does odd things - can't get out of his chair because he can't work the electric buttons on the recliner, will tell me to put the brakes on his walker but then he unlocks it (it's like he had to do it in order to use it), tries to use his walker backwards or he might use it to get somewhere but will walk right past it on the way back (not steady at all)
His speech is becoming more challenging, not remembering words or using 1 or 2 word demands and I have to 'put the puzzle' together.
He's on lactulose to manage his ammonia level, but these symptoms are still present and were bad today with no apparent reason. Does this mean that his illness is progressing?
What do I need to look for to determine if this is 'just a bad day' or a type of final decline? When do I decide of he should go into hospice? (He gets immunotherapy right now so he doesn't qualify, but ImmunoT is not a cure, it's about control. Dad associates it with 'the end' ... if he can't go to treatment anymore then 'that's it' (so to speak). At what stage or how would I decide to take that away from him? Esp because he's aware - even though he's confused- he's aware enough to know that he 'doesn't want to be treated like a child' or locks us out of the bathroom (ugh...) or gets frustrated with himself (he called himself stupid tonight)
So to summarize:
+How do I deal with someone who can't fully do for themselves or needs redirection but is agitated and aware he's being told what to do by his daughter?
+How do I determine what I'm seeing day to day in relation to his progression of his illness?
+How do I know if it's all his illness or if he's doing something on purpose?
+How do I decide when to switch to hospice, because he denies he needs the extra help in the home (he does) but is aware he would be stopping treatment which would make him lose any type of hope or motivation
+If he wants to stay up until 3am watching TV but I need sleep because I have to work and he's a falls risk (so I need him in bed), do you make a dying man go to bed or do you stay up with him until 3Am?
:-/
I think you have taken on a daunting task--managing two very ill parents alone? I don't think that is sustainable, whether from a financial, practical or physical/mental health stance.
1. What kind of support/direction are you getting from dad's medical team? IMO, it is they, not you, who give the signal that it's time for hospice.
2. Your parents need help coming in. What are their resources? It is ENTIRELY unreasonable to expect an adult child to give up their livelihood to caregive.
3. Your father's cognition is failing. I highly doubt that he's faking anything.
4. The problem inherent in adult child caregiving is that your parents will ALWAYS see you as a child, not as a competent adult who is in charge.
5. You need sleep. Nighttime caregivers are needed if dad is going to stay up.
Caregiving is a two-way street. We have a wise poster, Beatty, who says "caregiving only works if it works for BOTH parties".
This is not working for YOU. Your parents don't get to call the shots if it means you lose your health or financial security.
Have you consulted the local Area Agency on Aging? Considered facility care?
She will still tell people "everything's fine" ... including providers I try to get into the home. I don't know how to deal with that -- I can't get services set up for her to just push them out?!
She got hurt bc she tried to catch Dad during a fall, which is why I'm here. Dad wants to die at home and I'm trying to honor that.
Fast forward, Bridge to Hospice is currently in home with minimal services. They will pull out 12/15 if he is still in ImmunoT treatment. He is connected with the VA but is not at a % to get a ton of services (we are getting him re-evaluated right now). He is a V-Vet, exposed to A Orange so he qualifies for services, its just been put off in getting stuff done. I wasn't able to work full-time, do their stuff and my stuff. I truly don't know how people do it- props to them!
I feel obligated to be here. I feel like I will be shunned if I leave and go back to where I want to live (out of state, down south) and am happier. I get alot of guilt from the family, some is lightly perceived and some is truly guilt pressure.
I mean, we know he's dying. We know it will likely be less than a year, but realistically less than 6mo. I put a time limit on living here at 6mo with the goal to get services in the home and help declutter. But seriously, how do I move when someone is dying? And then how do I move and leave my mom when she's grieving? I feel so torn bc I feel like I'm wasting my life (again, sounds horrible) And I feel like I need to be here. :-/
Services: we don't have any personal care aids... his needs are So up and down (thus far) he might need alot of help today and not tomorrow. How do I justify aid services when they come in and he is 'fine' (per their report)? It's like he puts on a show for them (like he knows he needs to try to be put together... it's the weirdest thing). I used to see it when I did psych evals -- individuals with SMI could 'hold it together' for 10-15 mins and then they would unravel (start to show signs of psychosis, etc). But the doctors and even the in-home nurse... they don't see what we see and it's so annoying! It's like everyone thinks we are crazy or money hungry or just don't want to deal with him... which is the furthest from the truth :-/
Sorry went off on a rant
Hepatic encephalopathy generally occurs in people with chronic liver disease, such as cirrhosis or hepatitis. Triggers include infection and dehydration."
I think you need to talk to his doctor. Maybe the lactulose is no longer able to control his ammonia levels. Maybe its time to call in Hospice?
When it comes to help tell your parents its for you. That caring for both of them has taken a toll on you. Hospice can be told not to mention they are Hospice. With "in home", you only get an aide maybe 3x a week to bath him. The time alotted depends on the agency. A nurse to check in every few days who should be available 24/7 with any questions. Supplies and medications are provided with no cost to you.
He never got actively sick, partly b/c he is a BIG man and his liver was huge--so as it was shutting down, he still had sufficient 'healthy' tissue to function.
However, from dx to liver transplantation was a solid 9 months of fear. He got 2 'no go' calls--we'd haul up to the hospital and wait and they'd send him home. That was awful. I really knew that he was meant to live longer, so I think I may have been in a better state of mind, mentally & spiritually. He was ALL medicine based and #s--he'd track his MELD score constantly, b/c I think it gave him a sense of control in a situation he could NOT control.
He did not suffer from encephalopathy, but he did get really cranky and mean POST transplant and really never recovered his fairly easy going personality.
All that said--I knew there may have been a point at which we would have him on palliative care--then possibly Hospice. At some point, we WILL be there.
You are a wonderful daughter to step in and help. Yes, it feels ghoulish to start the 'cleaning' of your dad's stuff, but at least while he's alive he can guide you as to where and whom he wants things to go. We did this for my grandma as she was in hospice. It was hard, but we KNEW she was getting things her own way.
Having caregivers in, even when he's having a 'good day'--you can make use of them as you clean and pack things up. If they are amenable. I did this for my Eldercare client.
Only you can decide how long you want to remain with mom & dad. Mom probably understands that this is temporary and you can't stay indefinitely.
Once he begins to show bile in the blood (he'll turn orang-ish) then death is usually not far behind. Keep in touch with his docs. They can't really DO anything, sadly, for end stage liver failure, except for transplantation and likely dad is not considered a good patient for that.
Keep a journal for a few days of what the "real deal" looks like that you can share with agencies and medical providers.
It sounds like you are being subjected to F.O.G--Fear, Obligation and Guilt. It's hiw some families control their young folks.
IMO, it is stuff and nonsense to think that you "owe" a parent for your upbringing. People choose to have chikdren and have a legal obligatiin to care for them until adulthood. It is not a necessarily reciprocal relationship--your parents, as adults, need to respect the fact that you need to earn a living and can't stay indefinitely...which is what it's going to turn into. Dad is ill and then "well, mom is grieving" and then "mom needs help" and before you know it, you are retirement age with no savings.
You need to be uofront with your parents that YOU need more help coming in. And you shouldn't take "no" for an answer.