I Wish I Had Read This First

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!

Dear Jellybean 18095
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.

Tiny, are there VA-contracted nursing homes near you that might be more suitable?

Put my 96 yr old dad in ALF. Rent $4200 a month plus $800 for his monthly care level. Fortunately dad has a long term care policy that pays $100 a day which defrays a portion of the cost. Sounds like your dad is a veteran. So you should apply for VA Aid and Attendance. The benefit can be anywhere from $500-$1800 a month. They are not fast though. We applied in Sept of 2017 and in March got a letter from the VA stating they’ll have a decision by August 2018. I don’t think this is the norm. I made the mistake of using an agency to help with this and they dropped the ball. We had to put ALL of dad’s assets in an irrevocable trust so he can qualify for VA benefits. It takes a lawyer and more money to set this up and he’ll need to appoint a trustee. It’s usually whomever is the POA. If you think caregiving for your dad is overwhelming while in AL don’t move him to your home. To say the job is 24/7 is an understatement. You will lose your sense of self and become angry when your friends and family no longer want to have time for you. Then you get to have a stranger in your home for additional caregiving. There are very few caregivers who actually care about your loved one. It is nothing more than a job for the vast majority. There are abusers and thieves in this line of work. I know you said it’s someone from church. But my eyes have been opened to the whole “church “ thing. Dad’s not there every Sunday to make is contribution and all of a sudden the church and it’s members no longer have time for him. I know I sound harsh. But I have experienced everything written here. The parent will complain, lie and manipulate until you put your foot down. When dealing with the ALF put EVERYTHING in writing. You’ll have their full attention then. Know yours and your dad’s rights. Their are state guidelines in place for each state regarding ALF. If you experience neglect, abuse or theft contact the Department of Aging and Disabilities. I wish nothing but the best for you, whatever you decide. Remember this, put yourself first st all times. Like on a plane you put your oxygen mask on first then your child’s. This is no different. No one will come to your aid when you are burned out... everyone tends to disappear. It’s not fair but it is what happens. Put yourself first always. Don’t lose your sense of self. This affects marriages and friendships. I cannot stress this enough. May you have God’s assistance during all of this.

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. 

... and the new Hospice team is looking to take Dad off and "elevate" him to Palliative care (which I think may be at an additional fee). They said Dad is doing well enough to not be on Hospice.

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.

Hi FreqFlyer!

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...

Hi Barb!

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.

Tinyblu, that was an interesting article by Marketwatch. Of the places that I toured for my Dad, they were upfront with the information. Like the article stated, this varies from State to State.

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.

Tiny, if you recall,several folks on this board opined that your dad needed nursing home care.

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

Are you paying for the ALF for your father? If so, why?