Follow
Share

So my life coach likes to spit out the word "hypersensitive" when she describes me (not sure how I feel about that one), but it seems like anytime I try to delegate responsibilities, I end up feeling caught in the middle. There appears to be a tug of war going on between Hospice and the Adult Day Center. I finally told the Social Worker at Hospice that I could no longer take being involved in the ongoing episodes of "Is Dad's Oxygen Working?" I gave the hospice person the ADC Director's phone number and ended up getting a rather curt phone call from said director.  He wanted to know why Hospice was calling him... why they won't physically visit the ADC (It is rather far away), etc. He then proceeded to tell me that Dad's oxygen is empty when he arrives at the ADC in the mornings (which means that there's a breakdown at the AL) and that Dad could be on hospice for years. He then states that hospice is a big old "money racquet".  So... once again. I'm BACK in the middle of this. It's a machine with an on switch and an off switch. Why a group of educated adults can't seem to get the damn thing to work among them is a mystery to me.  So, I'm going to call hospice and ask them to physically visit the ADC and work this out. Otherwise, I will just have to pull Dad out of the ADC. I know he likes it there, but that piece of the puzzle is becoming unmanageable for ME and I'm NOT going to be in the middle of whatever drama they have going.  SHEESH!!!!!! Six more days until Punta Cana. Counting the moments!

This discussion has been closed for comment. Start a New Discussion.
Dear Tiny,

I know its a fight. You are doing the best you can. Hang in there. I hope you have a good time in Punta Cana.
(2)
Report

Sometimes, doing what happens to be the easy thing for you, doesn't mean it's the wrong choice. It sounds as if not going would be best for everyone.
(3)
Report

Tiny, check with your VA & ALF about the showers. Some facilities allow you to bring in your own people (or the VA) and some don't, but the VA would have taken care of Dad's showers at his facility if needed. We just paid one monthly fee which included everything, but I know AL is different.
(2)
Report

Tinyblu, I PM'd you. In addition to what's said above, I'm wondering about the AL and Hospice companies. We found mthr's MC through asking people we know who volunteered for the local hospice company that is not part of a chain. We also talked to people we knew from church who had loved ones go through the hospice cycle to find the right hospice to talk to volunteers! These friends pointed us to a faith based, locally owned hospice, and the volunteers pointed us to what they considered the best run facility for AL or MC (not the fanciest). One of the volunteers we knew actually put her husband with ALS in our MC so she could sleep at night while he made his last decline. That's how we found our awesome MC and Hospice! Don't be afraid to look around and change providers if need be.

I completely agree with dropping ADC. There will be no need for dad to keep up with the day of the week if he's not going. What happens if you are on your cruise and his O2 is out, his driver won't take him back, and you answer the phone? Will your vacation be ruined? Probably. Go on and pull him out for now - "the flu season is in full swing and we can't take that risk. It's about to be epidemic. We have to think of your health."
(5)
Report

I think I've reached that conclusion...

I'm gonna struggle with "bad guy syndrome" over this, but stopping the ADC is practically inevitable. Yes, it's free with the VA program (which is why I kept it going for so long), but this is ridiculous.

It looks like I'm going to handle these issues in shifts. First, I'm going to get Dad back on the portable oxygen concentrator so he doesn't struggle so much with the cylinders. The ALF is well versed in how to operate the portable concentrator, and Dad will just have to get over the beeping when he's not breathing properly.

Once we get that covered, I'll start gradually weaning him off the ADC. The only thing I will miss is that they offered bathing three days a week (the only way we could get him to bathe), but I'm sure we can get the ALF to do that (hopefully without too much of an extra charge. At the ADC, they just have someone in the shower facility with him to make sure he doesn't fall).

Just had a thought... Dad has gotten increasingly anxious over the last couple of months because he can't remember what day it is. The only reason he really had to keep up with the days of the week was because he goes to ADC on Monday, Tuesday and Thursday. This is becoming more of a win-win.

... OK... I will need this backbone as we get closer to the transition.
(5)
Report

Tiny I think you've got an instinct that the ADC is *really* not helping?

It's costing you a packet. Its incessant territorial disputes with the ALF - the driver thing, the helping Dad get ready thing, now the "hospice is a rip off" and the oxygen thing - are driving you to drink. And I think you've been suspecting for a while that it drives a wedge between your Dad and the people he should be making friends with at the facility.

I'm not blaming the ADC for everything that's gone wrong - the ALF seems to have been pretty snotty and uncooperative about getting Dad to it, and they shouldn't have been, because he wanted to go and they should have respected his choice. But you honestly just don't have time for any more "they started it" "no, they started it" bollocks.

And now that you say your father managed fine over the holidays...

Me, I'd give dropping the ADC a trial. Say, until the weather's better (you don't want him out on the roads in January if he doesn't have to be, hem-hem). See how he does up to Easter, maybe. If he's wretched and genuinely missing his old friends, you can always change your mind - having first put stricter rules in place.
(4)
Report

I think the title "Life coach" is one of those new age terms that doesn't really mean anything. We are all life coaches for that matter when we see a friend or loved one is down we try to lift them up, give them constructive criticism etc. etc. Telling someone they are hypersensitive isn't constructive criticism in my humble opinion. It's good to be somewhat sensitive otherwise you end up being a harda** which is not good. Somewhere in there is a happy medium.

As for the oxygen levels etc., I know nothing about that but sounds like people who do gave you good advice on that.
(4)
Report

Your life coach should read a book on hypersensitivity before she slings terms at people. And I hope you get your O2 problem straightened out.

Oh by the way, not all personnel in the healthcare industry are educated. Far from it.
(3)
Report

I am a big proponent of adult day health centers. I recommend them often, on this forum and in my local support group. My husband got a lot of benefits that I could not provide him at home. He had other adults to talk to and interact with. He had other people to say, "I like the color of your new shirt." He had live entertainment occasionally. There were games and activities he could participate in (or not). It kept him safe, gave me respite, and expanded his horizons a little.

But those benefits should all be available in a care center. The Day programs are a very nice supplement to home care, but I don't see particular benefits to them for people in care centers.

The mere fact that your dad likes going to the Day program is enough reason to continue to send him, other things being equal. But other things are no longer equal. There are drawbacks to this arrangement, so it needs to be re-evaluated.

If you want to advocate for something your father likes, focus on the oxygen tank. If necessary, even consider using a different hospice organization, though I don't think it should come to that.

It is possible that attending ADC is making it less likely that Dad participates in activities right where he is. If dropping ADC and getting him the kind of oxygen thing that gives him confidence would encourage more activity right where he is, that would be a good outcome, don't you think?
(3)
Report

Tinyblu, the "thing" now is life coaches. Their job is to pump you up, and that did not happen. A licensed professional counselor who does talk therapy is**so** much better for teaching you how to set boundaries and see how you can grow. It's often covered by insurance too. It's money well spent. Since your dad is on hospice, you might qualify for free talk therapy for grieving family. Definitely something to ask about. But talk therapy is the way to go. Life coaches have no license.

Let day care go. What is not essential for your dad has swallowed up **your** essentials.
(5)
Report

A life coach should not be labeling you with negative titles like hypersensitive. We can't all be a life is perfect guru, say follow me, AND get paid for it! No, really, do you want to be just like your coach?
Next time your guru says don't be so negative (they all subscribe to this), remember that the opposite of hypersensitive may be hypercritical.
No offense meant to life coaches, but are you sure the life coach is not on a power trip?

Wow, where did that come from? Me bad.
(5)
Report

Dad was on a concentrator before, but Hospice switched him back to cylinders. They used a different provider.

And I never thought of having the ADC call the AL directly. Duh!!!

I think some of the "issue" is in Dad's head, too. He HATES the cylinders. He could feel the concentrator vibrating which I think gave him peace of mind. I asked the hospice folks to get Dad his concentrator back. This is ridiculous. Things were much better then.

...and I'm really close to cutting out the ADC. The VA covers it, but as I stated earlier, it seems to be the painful piece of the puzzle. Between the driver issues and the traveling with the oxygen (which is getting harder), it's just not worth the hassle.

Besides, Dad survived the week that the ADC was closed between Christmas and New Year. Maybe pulling him out will force him to get out more. He stays holed up in his room because he doesn't want to wear the tank.

...and I didn't mention that the ADC director told me flat out that he's just not been telling Dad that his oxygen is out, so we don't know how long he's going without it. THAT is reason enough to pull him out of there...
(5)
Report

By the way...you r not hypersensitive just overwhelmed. I was retired when my Mom came to live with me. I can't imagine working and handling everything that goes with caregiving. I did the caregiving thing 3x a week. Then Mom went to an AL so I dropped the daycare. Once reason is I would be paying twice for the same services and the cost.
(3)
Report

Sorry, I can't see why Hospice should be involved in the daycare. I think the problem is the AL. You need to sit down with the Nurse and administrator. Before Dad leaves the Nurse or CNA needs to check his oxygen. He is paying big bucks to be cared for. The Daycare needs to call the AL when there is a problem. The AL is his residence. The ADC should be calling them. Tell the ADC that unless it's an emergency, like Dad being taken to the hospital, then they need to call the AL. I have seen ur post before. I don't understand why Dad needs daycare when he should have socialization and activities at the AL. I understand he likes daycare but if it's going to cause this much problems then I would stop it.
(3)
Report

time for a 3-way meeting? take notes and assign responsibilities?
(0)
Report

Tiny,
Not necessary to borrow a backbone.
Get your dad's doctor to order an oxygen concentrator. There is no O2 tank. It's a machine that sucks in normal air and concentrates the oxygen, returning it to the patient. No one has to check anything (except that it's on!) I believe they will run on batteries for awhile also.

He should also have a pulse oxymeter that fits on his finger to check  his oxygen concentration. $20. on Amazon. It fits in a pocket. His doc will tell you what his reading should be. 

Hope that helps.
(9)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter