It's been two weeks since I moved Dad to the new ALF, and I thought I was pretty clear on what we needed when it comes to Dad's oxygen. He's on two tanks... the portable when he goes to meals (a feat in itself) and the stationary unit when he's in his room.

The staff should know that Dad needs to be on the oxygen at all times, but every time I visit, the battery in the portable is dead (they don't plug it in), and he does not have the cannula to the stationary machine in his nose.

I wrote out detailed instructions that they assured me was shared with all staff members and I have reminder notes taped up by the machines as well as instructions on the whiteboard in Dad's room, but this is still going on.

I emailed the nursing director yesterday and provided a copy of the document I supplied when we reviewed Dad's care plan at admission, and she assured me that it would be done, but everyday it's the same thing. As a result, I'm stopping by daily to do what I asked them to do.

So frustrating...

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It sounds to me like your dad needs a nursing home level of care. Possibly Memory Care if he is at risk for wandering, but really, he just needs way more attention than assisted living provides. He is in the wrong place for his current needs. You want 24-hour attention for him. You are not going to get that anywhere, but a nursing home will come much closer.

You don't know if he's using the special sensitive skin body wash you provided. I think this has come up in your post before. You are desperately trying to provide perfect care for a very imperfect man. A man who isn't able to cooperate with the quest for perfection. A man who ABUSED you as a child!! What is compelling you down this path? The fundamental solution here would be for you to heal from your childhood. You don't think you can do therapy because you are way too busy trying to make your father's life perfect, and you need to use your money for his care, not yours. What is wrong with this picture?

Why are you being so loyal to such a vile man? What about loyalty to your sister who had to run away from the abuse? Your brother who killed himself? Your own mother? The various stepmothers he abused? His other living children who have cut all ties? What do you hope to accomplish with this misplaced loyalty?

You want to forgive him? I could get behind that. You want to suppress your own needs, give up your own goals and be absolutely miserable trying to provide perfection for him? That I don't get at all. Oh, I get that it stems from your dysfunctional childhood and that on your own you can't help it. We are trying to help as much as we can with words. The right therapist could do much more than that. And you deserve more!

This is a man who ruined the lives of several wives and several children, and you are worried about whether he's using the special sensitive skin body wash you provide for him. Wow! I just can't wrap my mind around these priorities.
Helpful Answer (14)


I am going to make a cup of coffee and calm down now.
Helpful Answer (12)

Tiny, excuse my bluntness, but some time ago I read the posts cited by Barb, and drew the same conclusions as Jeanne. My thoughts were that you were committed to caring for someone who was basically selfish, with a lot of other undesirable traits. I decided I couldn't write anything to change the situation, or to change the direction which you were taking.

I'm not sure my post can contribute anything, but I see that you're much more stuck in the quicksand of caregiving now than before, when you were actually able to verbalize your feelings. Now you're trapped, really trapped, and the issue isn't whether or not you should care for him, but whether or not you should take him home and make even greater sacrifices (and unhealthy choices).

Please understand I'm not writing this to be cruel, but only to reflect that I saw an impossible situation sometime ago and knew there was nothing I could write to afffect it, any advice I could offer (that may seem arrogant to think that I could help), or to help you realize that you were being sucked into a literal tornado of care, not setting your own needs and being tossed about mentally by the vacuum into which you were trapped.

Now I see someone literally panicked and desperate, not for herself but for a father who as I recall was abusive, inconsiderate and a lot more to his family.

Ask yourself this: how has your health changed since you began taking care of him? Do you have any time for yourself? And how do you feel about Tiny? Do you respect her, envy her, pity her, wish she was someone else? Who else in the family agrees with you about the care you're providing? Who else agrees that you can provide more than a facility can provide?

The fact that you see taking him home with you as the only alternative suggests to me that you're still putting him first, although I think the tug of war in your mind is still trying to save you from what would surely be a monumental sacrifice, as well as a deterioration of your own health, self esteem, and your mind as well. And what would happen to him if one day you suffer a fatal event and die? Where would he go then? And what would you have accomplished?

I know it's not easy to re-establish your boundaries, to see yourself as someone who deserves and desperately needs to draw a line in the sand. But if you don't, you're going to sacrifice and lose so much that the remainder of your life may be affected.. You might have a stroke, heart attack, develop anti-immune diseases (I did after taking care of my sister, who was a sweetheart to care for).

The one thing I would recommend is to check your area and see if you can find non-profit facilities for your father. I was so impressed when I discovered them. They can't provide constant monitoring, but they're better than any profit facility I've experienced. And I can rely on and believe them. If they were to tell me that my father couldn't keep the cannula on, as you're stating, I would believe them.

That allows me to create some distance between direct and contracted caregiving, so I can begin to normalize my own life.

Start spending less time with your father so he doesn't see you as his 24/7 angel and maid. Some things are going to happen. Does it really hurt anything (except the furniture) if he hangs out his wet clothes on them?

And do look for a higher level of care; others who suggest that are wise to see he needs more than he can get, AND more than YOU can provide. But, and remember this - if this facility can't provide it, how in the world could you, one woman, possibly provide the care you feel he needs? And I ask again, why do you feel so indebted and obligated to care for a person who has been so unkind and cruel to your family? This is an issue that needs high priority attention, this question of WHY?

You must realize that you're the ONLY ONE who can change your approach; all the posts in the world from concerned others can't make you change. But if you continue on the path you're taking, you are sealing your own fate. Please give this some serious consideration.
Helpful Answer (12)

Tiny; here's the thing. Your dad is still technically competent.

If he doesn't want to wear oxygen (and you've told us before that he doesn't, makes him look uncool and he's clearly a cool guy) they can't MAKE him wear it.

If he unplugs the portable unit, they can't keep coming back to plug it in.

I'm not saying that's what is happening; but giving who your dad is, I think you might consider it a possibility.

It sure gets you to come every day, doesn't it?
Helpful Answer (8)

Tiny please follow the advice given above. 
What you should to is let the AL staff care for him. 
Your father has lived his life and made his choices; now it’s time for you to focus on yourself and your well being, not his.
Look what you are providing for him presently. You have done MORE than enough.
Really if he doesn’t get his oxygen, and he gets in distress then have him sent to the ER and placed in a NH.
Let it go! Daily visits again? Let it go! You are by no means abandoning him- he is in AL.
You can’t be his savior. You are providing good care and support already and have been for years.
He is on Hospice & they don’t think he is ill enough to come and tend to his needs. Take a cue from them.
Really, let it go. You need to get a therapist to help you work this out in your mind as you seem to think you are not doing enough. most certainly are and should feel confident about it.
You are going to have a complete meltdown if you can’t establish boundaries with him. Life is for the living, Tiny.
You are young and need to do your own thing. Your father made his choices already and left many other lives in vast disarray.
You are going above and beyond unnecessarily.
Saturdays are “greasy spoon” breakfast days. Why I don’t know. Decrease this to monthly or cease all together. The guy is never happy anyway.
Saturday’s should be Tiny’s R&R days after working a full work week. 
Let the AL staff take care of him.
Helpful Answer (8)

Tiny, you don't seriously think that you can provide care for your dad alone, now do you?

You are way too smart to think of that scenario as a solution.

I'd give dad more time to settle. Step back.hospice doesn't think he's that bad off. If he's wheezing, tell AL to contact hospice.
Helpful Answer (7)

Tiny, do you have a pulse ox? If so, bring it and get his SAT rate every time you go in; keep a log of the rates.

There are cheap ones available at drugs stores; my experience is that they're not all that accurate.

If you get a good one, such as from a pharmacy, keep track of the rates. If they're below 90, get a nurse in right away and show her the rate, asking her to confirm, and perhaps just tuck away the log you're keeping enough that she sees you're documenting.

Or just contact the DON and raise the issue; that's what I'd do, after getting the SAT rates.

I just don't understand when someone ignores protocols on something as critical as oxygen.
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Tiny, for your own well-being establish boundaries, stick by them, and allow assisted living to do their job. And if I understood correctly, you are paying dad's fees for AL? Stop, you have your own old age to save for.
Helpful Answer (6)

Lil Bit, In case you can't tell, we love and value you. We want you to have a semblance of a life. We want you not to get ill ( I know you already have lupus. The effect of the stress is not good for you).
Please, please, PLEASE, take a break from your dad. Two weeks minimum. Block his calls. Tell the AL that you are ill and to consult with hospice.

Either he will settle in or wash out. If he washes out, he needs a VA nursing home. But give him and the facility a chance to get used to each other.
Helpful Answer (6)

In your shoes, I would start by contacting his Hospice nurse and ask him/her to investigate why the orders aren't being followed. Have you signed a HIPAA release so that their doctor can review the orders and write them for the AL staff? Another poster had this issue.
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