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...
Only. Could you please be a wee bit more loving to yourself, too???
"All shall be well, and all shall be well and all manner of thing shall be well." At least take a little time out to breathe.
Taken from Healthline.com;
Several serious side effects are associated with battered woman syndrome (or domestic abuse).
Short-term side effects that may be seen immediately include:
depression, lowered self-esteem, damaged relationships with friends and family, severe anxiety, feeling worthless or hopeless, feeling like they have no control.
Research has shown that battered woman syndrome and domestic abuse can result in long-term health consequences that can last for decades. Long-term effects can include:
PTSD-like symptoms, including flashbacks, dissociative states, and violent outbursts against the abuser, health issues caused by stress, such as high blood pressure and associated cardiac problems, health issues from the physical abuse, such as damaged joints or arthritis, chronic back pain or headaches, increased risk of developing diabetes, asthma, depression, and immune dysfunction due to long-term stress.
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Does it sound like a good idea for you to bring your dad home with you?
I suggest you find the time and funds (or contact your health insurance) to go to therapy NOW. Don't wait until he passes. Who really knows how long that will be.
This sick "relationship" you had/have with your dad can't be fixed by any of our suggestions, although they will help.
It will take the professional expertise of a licensed therapist to help you "untangle" your life and realize where you need to put your priorities. I say this because I've gone to therapy (a few years) over my alcoholic father. I wound up severing the relationship with him for a few years so I could heal. I was his only child but I became mentally sicker than he was.
Sometimes, things just have to be the way they are. We can't force things (like him keeping his O2 on). You will need to move him to a facility where he can be observed more frequently. If it's not the Royal Palace, then you'll have to accept it. As long as he's getting the CARE he needs, that's all that matters. Don't sweat the small stuff (body wash, etc.). You need to look at the BIGGER picture. You need to take many steps back to work on your own health and mental wellbeing.
Your life may depend on it.
The second thing is to get therapy. I will have the funds and the time to do it again. In the meantime, I'm stuck with free resources like Al-Anon or CODA (no local chapter) and crying on everyone's cyber shoulders.
Thanks for listening everybody. I know I can be a bit of a wet blanket (a hardheaded one at that) sometimes, but without this forum, I probably would have followed in my brother's footsteps. Lord knows I've thought about it, but knew that wasn't the answer.
...and my job is an integral piece of why I wouldn't consider moving away. Though my performance doesn't seem to show it much, I actually love what I do, and I love the atmosphere. My full time job is sometimes the only solace I have.
One step at a time...
I REALLY appreciate everyone's help. You all are complete godsends.
One of the advantages of being of low o2 is that your senses are somewhat dulled to pain, reflexes, and speed of thought. Wait, those are disadvantages you say. I want you to look at this with the perspective of a dying man. If you were dying, would you want to be in your right mind and know what's happening (knowing you, yes you would!). But for a man whose lived a life he can't be proud of, wouldn't just slipping away be easiest? That's what low O2 does. He slips away, easy, gently. Mthr's doc said that if she'd been left alone, she would have eventually just gone to sleep watching tv and just not woken up. Slipping away.
He's never going to give you the love you want. Let him slip away into oblivion. The longer he goes without O2, the less he will notice when you move him to a Medicaid or VA home. He will never acknowledge you doing so much for him.
Letting him ruin your life that you built YOURSELF despite his every effort to keep you from succeeding - that is just undoing everything you have worked so hard for. That is letting him continue the abuse you thought you escaped. I don't know if you believe in a higher power, but your higher power believes in you and made you for a better purpose than to undo what you were allowed and enabled to become.
So, your dad dies because you weren't there to put on his O2?
So, what?
Your dad is dying. He's on Hospice.
I don't mean to be cruel honey, but he's an old man with more than one life limiting illness. You are simply NOT powerful enough to keep him alive forever.He's going to die one way or the other.
Does anyone ELSE care?There are a bunch of us on here who care deeply about you, Tiny, about your health and well-being. Else, we would have stopped posting on your messages a long time ago. You're smart and to the point and you have so much to give the world.Please don't squander your life.
As Jeanne says, therapy could be helpful. Look up DBT. Not bare your soul, rather , work in the here and now.
If it were easy and intuitive you have have done it years ago. All of your siblings seem to have found a way to be in a different place (some very sadly so). And you haven't so far.
I don't think ANYONE on these threads is blaming you or criticizing you. I know I am certainly not. Your father did a super good job of programming you. We are all encouraging you to get deprogrammed, anyway you can! If Al-Anon helps, great, go to meetings! If frequent posting here helps, wonderful -- keep posting and we'll keep encouraging. If talking to the ALF social worker or the DON or your own spiritual leader or your hairdresser help, fine, do it!
Personally, I think you are going to need one-on-one sessions with a trained therapist to break the unhealthy bonds of childhood. All the rest can help, but the obvious (to me) foundation is professional help.
Why aren't you in therapy? Why haven't you been for at least the past 3 years?
I don't know why I feel so obligated to him. He just PROGRAMMED me so well. I want to take some time away, but I'm afraid.
What if he dies while I'm away...because no one was there to put on his oxygen? I don't know how to get over the guilt of... everything, but each visit leaves me shaking. This can't be healthy.
I think the only way I'll be free of this is for Dad to ... go. Then I'll have the time, energy and money to take care of me. It's awful to wish someone would "go", and I don't mean it in a malicious way. It's like I can't seem to break free. I get in my own way.
It's codependency. I KNOW that. Ugh. I'm going to Al-Anon meetings with hopes that I can rediscover what backbone I had a few years ago (BarbBrooklyn... I remember that awful day).
I WANT to listen. Everything everyone is saying makes so much sense, but it's like I'm STUCK. I don't know HOW else to do because I've been doing the same thing for so long. I'm not in a good place... (sigh)
You have Lupus. I am sure you have educated yourself on your condition. Simple illnesses can be life threatening to you.
My cousin had Lupus. She was otherwise young, healthy and strong. She got pneumonia, her Lupus flared. She died.
I have a friend late 40s. She has Lupus. Not really a problem for her. Twice her Lupus has flared involving her heart. Both times she was in ICU then in Hospital for 7-10 days.
If you move Dad in with you what happens if your Lupus REALLY flares and you end up in the hospital?
How do you think you can survive with your Dad under your roof?
I am assuming your thoughts are to hire in Home help if you move your Dad into your home. How long will the aides last? What happens when they are late? What happens when they don’t show up?
Again, how do you think you can survive with your Dad under your roof?
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.
It’s very, very common for absentee fathers to “suddenly” open their doors and their hearts after their offspring becomes a legal adult.
Not trying to diminish your relationship with your pop. It’s great that you reconnected. Just suggesting a possibility for the radio silence while you were a minor.
Walk away, you can do it. Visit once a week and as soon as he starts the abuse, tell him to stop it or you are leaving and do it. If he calls don't answer. If he leaves a message contact the AL staff and find out what is going on.
My Dad left when I was ten and told me not to contact him till I was 18. I don't know why.
When I did make contact he welcomed me into his home and said there was always a home there for me. He had never abused me and the contact with him and his family continued till he died and beyond.
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.
I am going to make a cup of coffee and calm down now.
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. Well....you 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.
Please.
"I'm admitting that I went into this caregiving thing with a HUGE grudge because my Narcissistic father wasn't the best to deal with BEFORE he "got sick". Maybe I'm cynical, but I sometimes question if he's really sick or if he's just looking for a reason to continuously make my life a living hell.
Today was the last straw... he YELLED at me in a bank full of people. He accused me (again) of taking his money. He then screamed that my BF (whom he hates... I have no idea why) put me up to asking him for money and how we're not going to live off him. He called me all kinds of names that I dare not repeat... let's just say that he views me as a "lady of the evening"
It was AWFUL... so bad that I literally walked off and left him screaming in the middle of the lobby. This is a culmination of abuse over YEARS. He's been married SEVEN times... I've personally witnessed him physically abuse at least half of them.
My baby brother committed suicide. Daddy abandoned most of his 11 other living children...my sister and I have tried to be there for him, but she keeps her distance (recently returned to his life once her daughter went to college...how convenient).
I got stuck with him somehow. My sister (with the college child) ran away from home and my drug addicted mother left me with him. For as long as I can remember I had to care for him. I resented it. I grew up. I went to college. I moved away. I started living my life. He gets sick and BAM!!! "Lil bit" must save the day.
I TRIED. I can't take the abuse anymore. I tried to honor his wishes of not being put in a home, but I CAN'T DO THIS!!!!!! We tried independent living, but he can't even do that.
I was diagnosed with Pneumonia yesterday but I still got up to make his breakfast....his response: scream more... accuse me of faking my illness.
Something snapped in me today. I really could care less if he rots away in that facility. Maybe it's emotion, but I CAN'T do this anymore. My health is suffering... my relationship is on the verge of being over. I cry EVERY day. I don't even fix myself up anymore. I don't work out. I hardly eat. I'm always tired. My work performance has declined. He's GONNA KILL ME!!!!
so what's the deal with the money? I have full POA. IF i WANTED to take his money, I could easily CLEAN HIM OUT!!! I've NEVER done that. Guaranteed his other children would in a heartbeat.
Daddy has always been OBSESSED with his money. I think that's all he has. I HATE discussing it with him because he 1) gets confused or 2) doesn't remember the conversation then I get accused of stealing from him.
I'm ranting but I clearly pity this man who is going to die alone because he's so evil. Dimentia or not.... I should NOT be disrespected.
I'm revoking the POA. Let him figure out how to pay his own bills... I'm making him someone else's problem. I'm DONE!!!!"
"How much longer is this going to last? Don't get me wrong. I must love my Dad on some level (although growing up with his Narcissistic ways wasn't a bed of roses and my definition of "love" has never been accurate), but sometimes I just want to REST.
Of my dad's multiple children (that didn't die from drugs, alcohol or suicide) from multiple wives, I am the ONLY one who really has anything to do with him. Being the youngest girl I got stuck with caring for him (legally blind) and the women he has beaten since I was six years old.
I tried my hardest to "escape" by going to college and moving away, but our nauseating codependent relationship has continued on WAY past the expiration date. Thankfully, I have found a 12 step codependent program that has been a tremendous help, but sometimes..."
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.
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.
Secondly, the VA in my city offers a foster home. I checked it out too, and part of the down-side was that Dad couldn't have a private room with his own furniture. It was very affordable, and it was run by a sort of "house mother." There were something like 3-4 men living in each house -- just a 3-bedroom ranch house with bathroom and other modifications for mobility issues. The other problem --(tho not a problem for everyone, I guess) was that all residents were required to go to adult day care for something like 4-6 hours a day (included in the cost), and I knew Dad wouldn't like that. I'd taken him to that particular adult day care before, and it was more like a community center, and I knew Dad would want to be in a "home-like" setting (with couches and TVs). Anyway, if this doesn't work out for your dad, you might check with the VA in your area for a foster home. I would def have used the foster home if we couldn't afford MC and I couldn't keep him here. I thought it was pretty nice, and Dad actually did too. Best wishes -- I know this is hard for you.
I've told him he doesn't have to wear the oxygen, but the ALF wants to enforce "orders". Ironically, they don't have the time to monitor what he's doing.
I tried to convince myself that Dad didn't need MC, especially since there's no way I can afford it. I feel so stuck. It's either the VA dump or me figuring out how to bring Dad home with me.
No disrespect to the staff, but I think Dad is out of their league. As everyone here tried to tell me, he's not fit for a ALF. He needs more. Sadly, I may have to take those reigns. Wow.
Tonight, he told me he washed his own clothes. I didn't bother to clarify, but sure enough, I walked into a room with soaking wet sweatshirts thrown haphazardly around the room. It's obvious that he can't even be left alone in the room. The staff can't watch him 24/7, so what should I do?
...and I'm not sure he's unplugging the unit. I think the staff is because Dad gets all worked up about the plugs. He just doesn't have the mental capacity to manage any of this anymore.
I thought this move was going to make things better. I just opened up a demented can of worms... How much longer will this last?
This new hospice team has cut Dad's visits down to once a week because he's not "that" sick. Then he refuses help... so Dad is not properly showering. No one is with him, so we don't know if he's using the special sensitive skin body wash I left everywhere.
Dad turned into a different person overnight that needs a higher level of care than I can afford. He's going to win. I'm going to be forced to move him in with me.
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?
I agree that you should talk about this issue with hospice. But, if your dad has low o2, he'll be tired and sleepy. He won't be angry and combative. There's a silver lining in almost every cloud.
Does your stopping by daily make any difference? How do you know he still has the oxygen on an hour after you leave? My mother's roommate frequently wasn't getting oxygen when I visited. I always reported that. An aide came in, fixed the problem, and left. Or an aide would come to help my mom, notice the roommate's problem, and fix it when she was done with Mom. But by the time I left the roommate was without oxygen again. She'd taken out the cannula, or somehow twisted a hose when when moving in her wheelchair. Short of watching her 24 hours, I don't know the solution.
The purpose of hospice is comfort. Which way is your dad more comfortable?
In any case, this is an issue for hospice to look into.
Stopping by daily does not solve the problem.
Your role should be working with staff, starting with hospice.