I Wish I Had Read This First

Started by

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).


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

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

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support