It's official. I made a HUGE mistake by moving dad to an ALF near me. It's a very nice place with nice people, but they just can't accommodate Dad's needs, and I'm sick of the nickel-and-diming. They currently charge $975 per month on top of the monthly fee for "specialized care" because Dad is on oxygen... A room portable contentrator that stays on all the time that Dad can put in his nose on his own and a smaller shoulder unit that simply needs to be plugged in. They hardly ever do those two things.
I've also learned that Dad needs assistance with bathing now, so twice a week I am going to the ALF to bathe him (or I would have to pay an additional $475 per month), and since I THANKFULLY only live 5 minutes away from the ALF, I swing by to plug in his small shoulder unit and put the cannula to his room unit in his nose. Dad isn't purposely taking it out. He just can't comprehend that the unit being on isn't providing oxygen.
Despite talking to the DON, director of the facility, and other staff members, the only thing that has been done is placing a sign-off sheet in his room for each shift to initial that they have plugged in the oxygen. It's been empty for two days.
This just isn't worth the money I'm paying. So, in my frustration, I found this article.
marketwatch.com/story/10-things-assistedliving-homes-wont-tell-you-1344980948534
It's sobering and makes me angry. I fell for the banana in the tailpipe. My lease is up in August, and I think I'm going to move Dad in with me and send him to Adult Day Care (a different, smaller facility) during the day and split caregiving with a trusted, paid professional (a church member who knows Dad well is looking for about 30 hours a week). Since I'm doing mostly everything anyway and I have no life as is, this would be a much cheaper level of stress.
I know a NH would be a good option, but I haven't found any within my budget that I would feel comfortable placing Dad in. I just don't trust anyone else to handle his care properly (codependent I know).
I don't even want to THINK of how much I've spent, but moving Dad is going to be MUCH cheaper... and I'm going to try to get as much free VA resources for the home as I can.
They have a Home Health Aide and Skilled Nursing Program that I'm working on now. The amount of paperwork, red tape and outright BS bureaucracy is ridiculous, but after enduring the POINTLESS investigation and having to fill out their forms FIVE TIMES (apparently they can't agree on which one is the proper form), THEY OWE DADDY!!!!!!
It's time consuming as all get out, but when I am going to cut costs, I'm going to cut them!! I'm counting down the days until I can put in my two week notice at the second job. I can see myself getting the pedicure I've missed while the VA Home Health Aid spends time with Dad. FINALLY I CAN AFFORD IT!!!!!!
Rough Estimate... 20 hours per week at $11 per hour (all second job income goes to Dad) is roughly $9,680 for three years ...seriously $29,000?!?!?! Humbling....
1) I'm pretty sure you can sacrifice the VA Aid-and-Attendance for Medicaid; you can probably work thru a social worker at your local VA or VA hospital. The social worker assigned to Dad from our local VA hospital was a life-saver for me for 3 years.
2) Are you willing to move Dad to another area? I know that the VA foster home situation is fluid, so you may be able to place him in another city. I checked into one in my area for Dad (also a Korean vet), and I liked almost everything about it. (Dad would have had to go to adult day care too often, and actually Dad declined so rapidly that I doubt he could have stayed there long.) Best wishes to you and your dad -- I've always felt like the Korean Conflict (I don't think war was every actually declared) vets were truly forgotten by most of our society.
Neither is it self-inflicted pain when you just care about what happens to your father.
There is, of course, a but.
You have been trying to drive his situation for years. You have exhausted yourself and spent - have you added up? - how many tens of thousands of dollars on supplementary services which, let's be frank, were either not or only half-heartedly delivered.
Aren't you angry?
I am. For both of you.
I want you to find some allies. Who are you in touch with? Who can you stamp and shout in front of?
I have reviewed every financial avenue for VA monetary aid, and Dad is MAXED out. On top of disability (he was discharged from the military because of his injury), he already gets Aid and Attendance.
Though this is a sizable monthly amount, his monthly rent plus all the fees at the ALF exceed his income, so I work a second job to make up the rest (to the tune of about $800 per month).
I already researched the "giving up the pension" thing and Dad doesn't GET a pension. It's a disability check which can't be stopped for Dad to qualify for Medicaid.
I've been on the waiting list for a VA Medical foster home for two years... there are still none available. The VA approved nursing homes (as I said) are DISGUSTING and there's one about 45 minutes away from me and another on the same campus as the VA hospital which is 1.5 hours away from me.
I looked into other nursing homes. Private pay only costs more than the ALF ($9,000 a month for memory care) and the ones that accept Medicaid still just aren't "up-to-par" for my snobby standards.
I feel guilty enough about my "level" of care. Putting him in a dump would take me over the edge. Dad refuses to do the activities as is and I spend so much time going after the ALF staff to complete stuff, I'm at the "why not" stage.
I haven't had a life since I started caring for Dad. I stopped dating two years ago. I never really had many friends before this, and the few I did have already disappeared. You know how it is. You keep declining invitations due to caregiving until the invitations run out.
I've resolved that I don't have a life anymore and don't have the energy to try. I know this is self inflicted due to my unwillingness to put Dad in a NH, but I just... CAN'T do that until he's so out of it he doesn't know where the hell he is. If he keeps going the way he is, that will sadly be sooner than later.
This makes me really fearful to age. I DON'T want to be in this state EVER. Weird that I think about such things at the tender age of 40.
And look into VA contracted homes. One recent poster here, Karsten, found a wonderful VA contracted place for his dad.
I just googled this. On a site called "Paying for Senior Care" was this nugget of wisdom:"VA pension, A and A and Homebound pension are more suited to home care and AL care. Medicaid is more suited when NH care is needed".
You are paying for dad's care out of, I believe, a misplaced sense of obligation.
The duty to support and educate a child is the duty of a parent.
There is no reciprocal relationship in this financial obligation, from child to parent, at least not in this country.
I believe were obligated to help our parents obtain care that is within their means.
Dad has a VA pension, correct? It means he can qualify for Medicaid. Can he give up his pension and apply for Medicaid and thus go to a Medicaid NH? Can he go to a VA contracted home?
The basic problem is that he needs nursing home level care. I understand your reluctance to accept the choices you've seen so far. Where do you live that the nursing homes are so few and far apart?
My mother was in an NH that accepted Medicaid. It was not in a new fancy building but it was clean and kept up. She had excellent care. She was content there the last couple of years of her life. In fact she blossomed! We were amazed that she participated in almost all activities. I'm not disputing what you have seen, but I also know that there are places that accept Medicaid that have higher standards than you have seen.
It is VERY hard to care for a person who needs NH level care in a private home. Your plan for day care sounds good. Have you visited the ones near you? Do they meet your standards? Will they accept your dad and do they have openings? I'd check that out thoroughly before I counted on that solution. My husband was in 3 different day care programs. One was good. One was poor. And the one he went to for 3 years was absolutely excellent. But he did get to a point where he needed more attention than they could provide and they told me he couldn't continue there.
It sounds like your Dad will be unable to continue with Ativan and Morphine. Be sure he has medical supervision as he withdraws from Ativan. I hear that can be tough! I'd try to negotiate with Hospice to keep him in their program until he can be weaned off. Cold turkey is not recommended. Maybe he can get this kind of help on palliative care. I don't know.
Can you envision taking care of your father without Ativan and Morphine? In your apartment? Wow. You think putting him in an ALF was a mistake. I think you are headed for an even bigger mistake!
My 93 year old father applied for Aid and Attendance and it only took about 2 months. I know you said used a company but did they let the VA know he was over 90 as the VA tries to get to these fast. Hope you hear soon.
Oh and by the way, my dad is on hospice too and has not yet care leveled out of the ALF yet. Also, hospice comes 3 times a week to bathe him. All hospice functions are paid by Medicare.
Not sure if that's great news or not because the VA won't give him the meds that keep him calm (Ativan and Morphine), and I just can't take any more work time to research VA Hospice resources or find a doctor that will give him those meds.
Yikes... what a mess.
I wish I could afford to let the staff take care of the ADL's, but we can't afford that. I've GOT to quit this second job, and adding that on would force me to have to keep it. It is what it is at this point.
... and the fact that $975 can't get the folks to take two seconds to plug in a machine just doesn't compute in my head. I don't even mention it to the AL staff because I know that they have other stuff to do. Dad's "too sick" to be there. I get it. They're very nice people, but can't seem to get it together.
Before Dad moved to this place, he plugged in the machine on his own, but since moving, he's like a different person. He declined overnight. Yesterday, he had the portable shoulder unit on and the cannula in his nose, but the battery had gone dead because the staff didn't plug it in. By the time he got back to his room, he was wheezing and gasping for air.
When I'm frustrated, I often think "How long is Dad going to go on this way?", but I would never do anything to speed up the process.
In fact, I think his cognitive issues may be worse here because he's constantly without oxygen!!!
I just made a mistake in moving him. Now I'll just deal with the consequences. I should have never tried to make it easier on myself by moving him closer and saving a few bucks. He was fine where he was. Oh well...
Well, the VA nursing home (over 1.5 hours away) was just on the local news about neglect, and I don't want to be that far from Dad.
The closer facility (about 45 minutes away) is a DUMP!!!!! It smelled like SH**! There was a lady walking around asking everyone if they were her mother. I saw a man walking around aimlessly in a dress shirt with no underwear, and I heard a woman raising her voice at a poor, confused woman. The huge roach I saw scurry up the wall sealed it for me. It was dingy and dirty. I just can't do it.
Maybe I'm a snob, but it's been my observation that the homes that accept Medicaid and government programs, though more diverse, seem to be in bad shape which is sad. Lower income shouldn't mean lower care, but that always happens. With school systems or anything sponsored by the government. Yep... that's a HUGE soap box for me.
Anywho, the AL wants to remove him now because I haven't been able to get the ACH form for automatic draft set up properly. The VA and the Bank are fighting because the government wants the form completed a certain way and the bank says they can't do it. As a result, I'm having to get a paper check, put it in the bank, then get a bank check and bring it to the AL. Despite getting payment ON TIME, that's not good enough.
I acknowledged that Dad needs a NH, but none of them meet my standards. My Dad struggled to put me in the best schools and made sure I made nothing less than a B+ (with HUGE ramifications) my entire life because he didn't want me to be another African American statistic. I'm paying THAT one forward.
I realize the ramifications of this, but since I won't put him in a dump (snob or not), I'll just have to deal with it.
Yes, extras do cost a lot because the facility has to schedule an employee to do that work. I decided to let the employees take care of my Dad, even if he had to take an added option, thus this still gave him a feeling of independence. If I ran over there all the time, he would feel like he was helpless and embarrassed.
So, tell me why you don't think the VA homes you've seen would be such a good fit? Do you know what you're looking for/at?
Your dad is on Hospice and on oxygen . He's blind. He has medical as well as adl needs.
He needs a nursing home.
I should tell you that my demented millionaire, captain of industry uncle got the best care of his life in the dumpy VA nursing home he was admitted to when the fancy AL evicted him due to his violent behaviors.
I think you need to give the VA NH a chance