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Dr. Bob is Robert Hsiung, MD,
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Posted by 64bowtie on November 12, 2004, at 22:31:32
In reply to Re: Looking for advice - Gross warning » Dinah, posted by Larry Hoover on November 12, 2004, at 21:10:08
Posted by Daisym on November 12, 2004, at 22:44:49
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Dinah,
I agree that you must do something, however hard it is. Have your Dad's MD make a report, it will make your case stronger.
I'm sorry you are going through all of this. It is hard to have to be so many things to so many people.
Don't forget to take care of yourself.
Posted by tryingtobewise on November 12, 2004, at 22:56:47
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Hi Dinah,
I just want to say good luck to you. I too think your plan of talking plainly to the doctor, and then to a pastor & the caregivers sounds good. If between those 3 sources, nothing instigates change, then proceed via the legal route.
You are being a great daughter to persist in making sure your father & mother get (& provide) the best care possible.
My own 58 year old father has alzheimers (middle stage) and my diabetic mother not only cares for him, but is the legal adopted parent for my 6 year old neice & 5 year old nephew and something is going to have to give in that situation soon. I can empathize with what you are going through.
Good Luck,
Kim
Posted by boomarang on November 12, 2004, at 23:38:47
In reply to Re: Looking for advice - Gross warning, posted by tryingtobewise on November 12, 2004, at 22:56:47
your plan of attack sounds well thought out and very appropriate on every level. It will be natural to wonder if you are doing the right thing as you go along this path but when you hear in stereo, as you have from all of us, that you are doing the right things...well, you need to believe in yourself.
sara
Posted by gardenergirl on November 13, 2004, at 12:05:12
In reply to Re: Looking for advice - Gross warning, posted by boomarang on November 12, 2004, at 23:38:47
Dinah,
Wow, what an awful position you are in. I've seen similar family situations in the past when I used to do sub-acute rehab in the past. When it came time for discharge, there was often a huge gap between what the patient could do, what they think they can do, how much help was needed, and who would be providing that help. It was often VERY helpful for the doctor to make the hard recommendations. For some reason, patients respond better to that than if it comes from family or some other (perceived lower position) health care worker.
So, consulting their doctor or a geriatrictian if you have access to one, even Adult Protection Services is not really "ratting them out", even though I can certainly understand how it feels so. It's helping them get the care the need. You would do whatever you had to to get care for your son if you couldn't provide it yourself. It's similar, although not exactly the same, with aging parents.
And not to be the voice of doom and gloom, but yes, the situation you describe is neglect on the part of your mother and your father. They both are responsible for your dad's care, and what she is deciding is not adequate. Your fear of skin breakdown and infection is valid. And from what you described in the past, and I certainly mean no offense towards your own abilities, but I think that you are really not the best caregiver for the personal care your father needs. He needs someone trained and skilled enough to deal with unexpected situtations. And believe me, from working in occuapational therapy and doing numerous bathing sessions with all kinds of different clients, bathing and self care is not always straightforward or predictable. The caregiver needs to be able to get him up off the floor if necessary.
Dinah, I think any professional you consult with would agree with you that they need more help. The only ones who don't are your parents, and they are not making good decisions right now, for all kinds of reasons. I think Lar's idea of conservatorship or guardianship might not be a bad idea. It's not a pretty process, and it likely will generate all kinds of angry words from your folks, but it sets a very clear boundary and expectation for who gets to make the decisions in order to ensure they get adequate care. There are court appointed guardians available, but in my state there is a waiting list, so it's much more expedient for it to be a family member. Perhaps your husband might take on the role, in order to give you more emotional distance? He could be the CFO of your parents' care, and you or someone else could be the manager?
I'm emailing you some internet resources based on the state I think you are in. You may already have some of these or not. Councils on Aging are VERY helpful. So is United Way, usually.
Take care,
gg
Posted by Larry Hoover on November 13, 2004, at 16:44:27
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Dinah, if you can tip the doctor off to your concerns, and get your dad alone with the doctor for a good examination, I think that would be a really good idea. I'm sure if your mom accompanies your dad into the exam room, things won't get said that need saying.
I think this doctor's visit is really critical to turning things around in a timely fashion. The legal angle was a push towards an objective view (you're too close to them both to get a clear view).
You'll be in my prayers, with an extra one on Tuesday.
Lar
Posted by Poet on November 14, 2004, at 15:49:27
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Dinah,
I don't know if Eldercare has an office in your area, but even if they don't they can refer you to local sources for getting free or low cost in home care. They also will be able to refer you to who locally to report elder abuse to.
Maybe your mother will be more willing to let someone come more often to care for your father if it doesn't cost much or anything?
I'm sorry that your mother has forced you into the position you are in. I hope the doctor helps on Tuesday. Try calling eldercare, too. My sister volunteers for them in Pennsylvania and so I know they do care about things like elder abuse.
I couldn't get an internet link to work, but this is their website address.
eldercare.gov
Resource locater hotline
1-800-667-1116
Monday-Friday, 9 a.m. to 8 p.m. easternPoet
Posted by jujube on November 14, 2004, at 17:25:32
In reply to Re: The doctor visit on Tuesday » Dinah, posted by Larry Hoover on November 13, 2004, at 16:44:27
Dinah,
I agree with Larry. You might even want to call the doctor and have a discussion with him before the visit on Tuesday. That way the doctor would be aware of your concerns and what to look for, questions to ask, etc. and it may help you avoid the emotional strain of having to deal with your mother and her unwillingness to share or accept that there is a need for help at the visit.
Tamara
> Dinah, if you can tip the doctor off to your concerns, and get your dad alone with the doctor for a good examination, I think that would be a really good idea. I'm sure if your mom accompanies your dad into the exam room, things won't get said that need saying.
>
> I think this doctor's visit is really critical to turning things around in a timely fashion. The legal angle was a push towards an objective view (you're too close to them both to get a clear view).
>
> You'll be in my prayers, with an extra one on Tuesday.
>
> Lar
Posted by Dinah on November 14, 2004, at 23:35:49
In reply to Re: The doctor visit on Tuesday » Larry Hoover, posted by jujube on November 14, 2004, at 17:25:32
It's hard for me to get over this big imaginary plexiglass wall between me and the rest of the world to respond (see my post on Psychology if that doesn't make sense), but I have read all everyone has said, and I can't tell you how much I appreciate the support. I really can't even begin to express it.
Lar, as usual you're brilliant. I think I'll call and see if I can talk to the doctor before Tuesday. There's no real way to separate my parents (although how they're going to fit two wheelchairs in one cramped exam room is beyond me), since they've both got appointments. He generally sees them together. I really hope he's more help this time than last time.
GG, you are as wonderful as always too. You really have a good understanding of the situation, and of course I'm not offended. I'm not great at caretaking humans in general, and I'd be abysmal with my parents. I can barely stand being around them without touching them. Thank you so much for the resource list (and you too, Poet).
I think that my mother may possibly be thinking of what she believes she can do. She's seen how much weaker my father is now than last week before he went into the hospital. He's already been unable to get out of his wheelchair into bed once and they had to call 911. So she's decided to put the boxspring directly on the floor. How well that works remains to be seen, but at least it means she's thinking about it. It isn't enough, but maybe she'll be less stubborn about what he needs. (and pigs will fly)
I greatly fear he's going to have to move to a residential facility soon, and that not even a sitter will be enough unless it's a big burly sitter. It's astonishing to me how fast this is happening.
Thanks again everyone. I'll let you know if the doctor helps me any. He has been steadfastly more laid back about everything than the nurses who've cared for my father have been, and I have no idea how much of it is humoring my father and how much is actually believing my father. My hopes aren't enormously high, but you never know.
Posted by gardenergirl on November 15, 2004, at 7:07:48
In reply to Re: Thanks to everyone, posted by Dinah on November 14, 2004, at 23:35:49
I hope Tuesday's appointment is helpful.
gg
Posted by littleone on November 15, 2004, at 20:48:08
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Dinah, sorry I'm late to this thread. Please know that I'm thinking of you. I'm glad you got some good advice off the others here.
There was only one other thing I wanted to add, but you'll have to forgive me for doing it so badly. I know that your Father had surgery or whatever it was recently and I'm guessing that was done by different doctors than the GP you're seeing. If your GP doesn't help, would it be possible to enlist the help of the doctors who did the surgery? I would like to think that they would want to help considering all their hard work is threatened by the risk of infection involved here.
If this is silly and useless, please ignore it. I'm not from America, so maybe things work differently for you guys over there.
Just a thought. Hoping things improve for you.
Posted by All Done on November 16, 2004, at 8:08:41
In reply to Re: Thanks to everyone, posted by Dinah on November 14, 2004, at 23:35:49
(((Dinah))),
I know what a struggle it can be when you have to parent your parents. It's just plain overwhelming sometimes.
I'll be thinking of you today and hoping that your parents get (and take) the assistance they desperately need.
Take care,
LaurieP.S. Congrats on the puppies! How sweet :).
Posted by Dinah on November 16, 2004, at 17:26:33
In reply to Re: Thanks to everyone » Dinah, posted by All Done on November 16, 2004, at 8:08:41
At the moment, the good seems to far outweigh the bad, although it might hit me a bit later.
The doctor gave an order for hospice home care for my father. I've contaced the hospice center, and since I have power of attorney for my dad, I'm going to handle everything with them. That way if my mom gets mad at them it doesn't really matter. So it's no longer me alone against my parents arguing for my dad's care. I feel vastly relieved. I'm sure they're used to dealing with obdurate families.
The bad news of course is that the order for hospice care means the doctor doesn't expect my dad to live all that long, although he didn't say so directly. He said that if my father takes an unexpected upward turn, we can stop the hospice care.
My father seems to be ignoring the implications of what hospice care means, although I'm trying (and have been trying) to gently nudge him to take care of his affairs while he can. Heck, I've done that already and odds wise, I'm not expected to die soon.
But to be fair to my mother, she only had one screaming fit today - when my father refused to continue to try to get out of bed to go to the doctor's appointment. (He couldn't make it out of bed, and we had to cancel appt. I spoke to the doctor by phone.) She did her best to clean him this morning. She is starting to understand how weak he is and how so very quickly he's getting weaker. And it only took moderate pressure from me (and actually taking the phone and doing it myself) to get them to hire the three day a week person for five days a week. I was still arguing with them about weekends, but I'm hoping that will all be sorted out now.
So I've got a hideous migraine after all the excitement, and feel sick from it. I'm positive I haven't processed emotionally what hospice means. But I feel like a huge huge weight has been lifted from my shoulders. I don't mind doing what I need to do. It was feeling helpless to do what I knew needed doing that was so discouraging.
In the past, these breakthroughs with my parents have quickly reversed themselves. (They never did agree to get the flooring installed in my father's room - it's still half concrete and half moldy carpet.) But that's why I quickly called hospice. I'm hoping when outsiders are involved, the short term changes will be more lasting.
(It really didn't help that I watched last week's ER episode last night and watched someone die of what my father is likely to die from. It looks like an awful death. Maybe I shouldn't be happy my mother was with him when he had that sugar low and went to the hospital.)
Thanks for the support everyone. It's been a real help to me, even if I haven't been around much.
Posted by octopusprime on November 16, 2004, at 20:42:36
In reply to Re: Good news (and bad news) update, posted by Dinah on November 16, 2004, at 17:26:33
i'm glad you got some desperately needed help
let that weight fly off your shoulders
can you give yourself a few days
to breathe and let it all sink ini'm sorry this is happening to you and your dad
you are being incredibly strongi hope the added care gives you the time to yourself and peace of mind you so desperately need
Posted by sunny10 on November 17, 2004, at 8:55:58
In reply to (((dinah))), posted by octopusprime on November 16, 2004, at 20:42:36
please don't even THINK about not being around here much. You drop in when you can; we'll try to re-enrgize you with our prayers and good wishes.
I am so happy to hear that the doctor ordered the hospice. That way your mother can't "fire" them if she throws a fit. As for what it means- deal with that slowly. First, let yourself feel the lessened strain of the full burden as the hospice is set up and starts working efficiently. Let yourself have a little break. Give yourself permission to think about that part of it on a set date two weeks from now, okay? You'll have gained back enough strength to deal emotionally for the next part by then.
Little steps. We're here to listen as long as you let us.
-sunny10
Posted by AuntieMel on November 17, 2004, at 16:29:11
In reply to Re: Good news (and bad news) update, posted by Dinah on November 16, 2004, at 17:26:33
You have really stepped up to the plate on this one. I know it was hard for you, which makes me doubly proud.
Posted by fallsfall on November 18, 2004, at 7:59:09
In reply to Re: Good news (and bad news) update, posted by Dinah on November 16, 2004, at 17:26:33
As hard as all this is, it is what needs to happen. You have done wonderfully well - making the call to Hospice must have been SO hard, but was SO important.
I'm glad that you ARE in control. Clearly, you are more able to make rational decisions than either of your parents. This way, you can take care of them.
Try to find a little time for some small way to get some quality time with your dad. (with my mother, it would be playing rummy...)
Let me know if I can help.
(((((Dinah)))))
Falls.
Posted by Dinah on November 18, 2004, at 8:10:49
In reply to Re: Good news (and bad news) update » Dinah, posted by fallsfall on November 18, 2004, at 7:59:09
So far everything has gone worse than if I hadn't gotten them involved.
And I don't think I like them. They lied to my mother and father, and I helped them, although I concentrated more on telling a version of the truth. How can I trust them not to lie to me too?
I have a meeting with the social worker, my father is in inpatient care where he does NOT belong, because all these people are in the very last stages of dying. They weren't even going to give him his meds or test his blood sugar.
All I wanted was some help in getting cooperation from my parents for a reasonable (not even ideal) quality of care at home. I didn't want what is happening. I was up sobbing at four am. I feel worse than I did before.
With my dogs, I'm not opposed to euthanasia. But I don't do it as soon as they start to die. I don't do it until they have only a few days left and won't have any quality of life. My father *can* have quality of life for a while. I can see not doing surgery or extreme measures that will only make him feel worse with not much hope of fixing anything. But their position seems more extreme.
And sticking him in a home against his will will be life shortening in itself. My father *hates* being around other people. He once said when he visited a home and heard and saw what was there that he could never live that way. The stress hormones in his body will shoot off the wall.
Plus, I've always been morally opposed to things like that. I just want them to get help. I don't want to force him into a living situation he doesn't want.
I can't do this, and now I'll be fighting them as well as my mom and dad. Even if I fire them, it might be too late.
It was a horrible mistake.
Posted by Larry Hoover on November 18, 2004, at 8:19:58
In reply to I think it was a horrible mistake, posted by Dinah on November 18, 2004, at 8:10:49
> So far everything has gone worse than if I hadn't gotten them involved.
>
> And I don't think I like them. They lied to my mother and father, and I helped them, although I concentrated more on telling a version of the truth. How can I trust them not to lie to me too?
>
> I have a meeting with the social worker, my father is in inpatient care where he does NOT belong, because all these people are in the very last stages of dying. They weren't even going to give him his meds or test his blood sugar.
>
> All I wanted was some help in getting cooperation from my parents for a reasonable (not even ideal) quality of care at home. I didn't want what is happening. I was up sobbing at four am. I feel worse than I did before.
>
> With my dogs, I'm not opposed to euthanasia. But I don't do it as soon as they start to die. I don't do it until they have only a few days left and won't have any quality of life. My father *can* have quality of life for a while. I can see not doing surgery or extreme measures that will only make him feel worse with not much hope of fixing anything. But their position seems more extreme.
>
> And sticking him in a home against his will will be life shortening in itself. My father *hates* being around other people. He once said when he visited a home and heard and saw what was there that he could never live that way. The stress hormones in his body will shoot off the wall.
>
> Plus, I've always been morally opposed to things like that. I just want them to get help. I don't want to force him into a living situation he doesn't want.
>
> I can't do this, and now I'll be fighting them as well as my mom and dad. Even if I fire them, it might be too late.
>
> It was a horrible mistake.Oh, Di. How could you possibly have known? At a point where you'd be wanting to breathe a sigh of relief, you get a new challenge like this.
Obviously, this is not what you wanted for your father. I'm afraid you'll have to find another alternative kind of care. You said you have power of attorney for your dad. Even if it's just financial, but especially if it is medical too, you go ahead and make other arrangments. Deal with the details later.
Act soon, dear.
Lar
Posted by AuntieMel on November 18, 2004, at 11:42:44
In reply to I think it was a horrible mistake, posted by Dinah on November 18, 2004, at 8:10:49
How can they put someone in a home without their permission? Is that legal?
What, prey tell, *was* the excuse they used? I think it needs to be pretty good to justify putting someone in a place against their will.
The only possible justification I can even remotefully think of for this is that they may think it is dangerous for him to stay at home because of the lack of open space (mom's hoarding.)
But - my outrage isn't doing you any good. Hang in there a little longer. Somehow this will get straightened out.
We're all behind you here.
Posted by littleone on November 18, 2004, at 15:16:35
In reply to I think it was a horrible mistake, posted by Dinah on November 18, 2004, at 8:10:49
Dinah,
Please don't berate yourself. You are doing your very best in a terrible situation. It was not a mistake to get outside help. It was not a mistake to do what you did. They were exactly the right things to do.
You may not have got the result you were after, but you may be able to use this to your advantage.
I am hopelessly naive about your health system and the services available and home care for sick people, but it certainly sounds like your dad should not be where he is now. However, it also sounds like your dad should not be at home. It doesn't sound like a very healthy environment - for him or any health care workers who may come to care for him.
No matter how much he hates being around other people, perhaps it really is in his best interest to be in some sort of hospital or care centre or something where it is hygenic and he can get proper full time care.
I guess I kind of think that it is similar to if your folks were really really really old, they had dementia and alzhiemers (sp?) and disabilities and it got to the point where it was truly more dangerous for them to be living at home where they could burn their house down because they forget to turn off the stove or whatever. There comes a point where no matter how much they hate it, they really need to be moved into a safer environment.
You may find it hard to see because you are in it and living it every day, but it sounds like your dad is approaching or has reached that point.
Even though you don't like where he is now, it's possible that it has scared him enough so that if you can move him into a better place, it won't seem like a bad move. It will feel like a good move for him. I'm sure he'll still b*tch and moan that it's not home, but perhaps inside his heart he'll know that you're doing your best for him and really do have his best interests at heart.
I'm so sorry you have to work through this. Also, I hope you are getting your husband to help fight the authorities. Even if he just goes along for moral support. You shouldn't have to fight this on your own.
Sending kind thoughts your way.
Posted by Dinah on November 18, 2004, at 15:28:39
In reply to Make it an opportunity » Dinah, posted by littleone on November 18, 2004, at 15:16:35
I'm reserving judgement. The social worker *seemed* a whole lot more reasonable than the nurses. She says not to fight with my mother any more, that she'll do the work to get my father what he needs at home. And that she didn't think he needed twentyfour hour care. Daily yes, twentyfour hour no.
But since she also told me how it's her job to manipulate families (when talking about my Mom) I can't help wondering if what she's telling me is true. I guess time will tell.
She'll talk to my mother sometime soon. I'm holding my breath to see if I can hear the explosion from here.
Or maybe my mom will be reasonable in front of strangers (although that is certainly not her history).
Boy did it start off badly though. The social worker started out saying that it was my parent's choice in what conditions they lived as long as they were competent. I burst into tears and was getting ready to take him home.
I still don't know how this is going to turn out. And no, they didn't take his blood sugars today.
Posted by JenStar on November 18, 2004, at 15:41:42
In reply to Re: It may not be as bad as I think., posted by Dinah on November 18, 2004, at 15:28:39
hi Dinah,
I think it's normal to have huge, dramatic ups and downs while you're starting this process. It's new, it's weird, it's stressful for all. If you still feel -- after a few weeks or months -- that your dad's care isn't adequate, by all means make other arrangements.But if they're taking good care of his basic needs, give it a chance and see how it works out. After the turmoil and hysteria of change wear off, maybe things will be better than expected!
About the social worker...what would be her vested interest in lying to YOU? Her job will go on whether or not your father is in her care. I'm sure that she's trying to find the right words to approach you, but hopefully she chose her job at least partly because she cares about families & helping people cope. If your gut tells you she's "bad" then you should fire her. But if it's just different, new, and weird to ahve someone other than you call the shots...give it a chance.
I'm rooting for you! I know it's going to get better soon.
JenStar
Posted by fallsfall on November 18, 2004, at 18:28:13
In reply to Re: It may not be as bad as I think., posted by Dinah on November 18, 2004, at 15:28:39
>I'm holding my breath to see if I can hear the explosion from here.
Um, Dinah, please breathe. Breathing is good for you. Breathe in, Breath out, Breathe in, Breathe out...
>She says not to fight with my mother any more, that she'll do the work to get my father what he needs at home. And that she didn't think he needed twentyfour hour care. Daily yes, twentyfour hour no.
This sounds fairly promising. Try to pin her down as to what she thinks they need - make sure that her vision and yours are compatible.
Hopefully you will both be working towards the same thing, it may take a couple of days to get things set up - you might have to be patient for a little while.
And do keep in mind that if she's not accomplishing what you need, that you can find a different social worker (can't you?) - maybe your therapist could recommend someone if things start to go south...
It does sounds like one of those situations where things will get better and worse and better and worse, so try not to make rash decisions. Give things a chance to settle out a little if you can.
And Breathe...
(((Dinah)))
Posted by AuntieMel on November 19, 2004, at 11:10:07
In reply to Re: It may not be as bad as I think., posted by Dinah on November 18, 2004, at 15:28:39
Do you *really* think the social worker would tell you her job is to manipulate families if it were *you* she was trying to manipulate? I wouldn't think so.
Now - a lesson taught me by my mom - a nurse:
Nurses these days are very overworked, and I would imagine in this case they aren't paid much either. The best way to handle them would be to smile and ask when they will be taking the blood sugars because you want to see the results. Ask for a schedule... Then if they miss the schedule you can smilingly, while acknowledging their business, ask when they will get to the next one.
She has another trick, too. She always takes a box of chocolates to each shift. Small, but they will remember you kindly and go a bit extra.
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