I Wish I Had Read This First


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.


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).



Countrymouse... I do a good bit of stomping and shouting... and whining and pouting here (smile).

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....

Talkey... it's interesting you say that... There's SO many resources for Vietnam Vets and even a program to pay family members that are caregivers...for Dessert Storm vets. I was disappointed that the only resource for Korean War vets that I found is Aid and Attendance... seems a bit odd to me. World War II and Korean War Vets are the oldest living vets. Not to discredit any other vet's service, but I thought there would have been more.

Tiny, 2 things:
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.

Tiny, it is not snobbish to expect a decent standard of accommodation for a disabled Korean War veteran. That *any* vets are being subjected to substandard care is a disgrace.

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?

Well... Dad is 100% service connected because his injuries in the Korean War left him legally blind. He's not almost completely blind.

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.

Tiny, I completely understand your devotion to your dad and applaud all of your efforts. I doubt that any of your options are what will make you comfortable. I wish you had some help (besides us :) as you walk thru this with your dad.

Re: the VA pension. I meant to say that I think you've written because of this, dad CAN'T qualify for Medicaid. Find out how you get around this, i.e., he gives up the pension to qualify for Medicaid.

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".

Tiny, I’m sorry you’ve had such a rough path with your dad’s care. It’s frustrating to feel like you’ve found a good plan and then have it blow up on you. I would like to encourage you to rethink the new plan though. When a person gets to the place your dad is, of needing nursing home care it’s just overwhelming to do this in the home. I spent the four years follow8ng my mom’s biggest stroke trying to find another plan for her, anything besides the nursing home. Each time I honestly went through it though, I came back to knowing her care was way more than our family, even with hired help could do. It would bankrupt us, financially and emotionally, and probably physically. She could do nothing for herself and a nursing home was truly the only feasible option. If I’ve read your situation correctly you’re on your own, finances are tight, and support isn’t great. That’s a huge load on you already. No one knows full time 24 caregiving until they’ve done it. I’m afraid you’ll not be able to keep up with the load of this in anyway, that’s not an insult to you, it’s just more than anyone can do on their own. My mom was private pay with a long term care insurance policy that lasted a very short time in her nursing home, then it was quickly on to Medicaid. My parents weren’t ever wealthy or poor, but the care she needed quickly depleted their assets. After she changed to Medicaid we watched carefully to see if her care changed any, maybe the paying patients were treated better, but there was never any sign of that. She received compassionate care until her passing. Please don’t rule out all places that take Medicaid or not consider that some nicer places also have Medicaid beds as it’s called. I wish you the best in this and truly don’t want either you or your dad to suffer in his care.

Tiny, I think I've said this before, but let me try again.

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?

Tiny, whose money is being used for Dad's care? What do you mean by "within my budget" in finding a place for Dad?

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!