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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 35. This is the beginning of the thread.
Posted by Dinah on November 12, 2004, at 17:53:07
And actually willing to consider actually doing something. :(
I have come to a major crossroads with my mother. She is so absolutely opposed to doing anything to make my father safer.
She claims that a hospital bed would clutter her house too much (this from a major hoarder who has most of the house clogged up) despite the fact that my father has been falling a lot and has cuts and scrapes all over himself.
She is adamantly opposed to hiring more help or placing him in a home. Yet he is now incontinent, and only marginally able to clean himself. She is perfectly ok with letting him lay in his filth until the person they hired three times a week next comes in. The nurse at the hospital adamantly agreed that they can't do this alone and need daily help. Moreover, my mother is completely unwilling to physically help him. I can't really blame her for that. As a diabetic, she does have to be careful, and she'd not in good health herself. But if she can't do it, she needs to ensure that it is done by someone. She screams that they can't afford it, and I thought spittle would start coming out of her mouth when I suggested selling some real estate they have if necessary.
Both of them are accusing me of being a shameful neglectful daughter. And I'm sorry, but I'm not emotionally able to wipe my father's behind. Plus I have a job, and I can't take off from it indefinitely to do it, even if I thought I could handle it.
My father sort of acknowledges that he needs the extra help, but is sort of afraid of my mother. (It's mutual. She's sort of afraid of him too.) I'm not sure he'll go against her to hire more help or insist on being placed in a facility.
I can't even believe her attitude, the way she jumps against anything that could help him. I'm beginning to think I *wasn't* overreacting when I call her evil.
I can see some things I can do. I'm accompanying them to the doctor next Tuesday. I'm planning on telling him all about it, sparing no time on niceties. But if he declines to be active about it (as he has in the past) I'm weighing a few alternatives.
I could talk to my mother's brothers and sisters. Her behavior is so clearly outrageous that perhaps they could exert some influence on her.
I could talk to her pastor for the same reason.
Or I could call in the authorities to report a case of elder neglect. They'd probably get her for her hoarding at the same time. We might even make the news. :( But I really hate to go that far, and my father is such a loudmouth that it might be hard to convince anyone he's a victim.
But he's got sores all over from falling and also from fluid retention causing his shoes to scrape him, and it seems to me that he's a prime candidate for sepsis should he get fecal matter in the cuts. I don't see that I have any alternative but to do something extreme. I *do* think it's neglect. And more, I think it's shocking selfishness even from a woman I knew was selfish to the core.
I'm not sure I ever ever ever want anything more to do with her when my father is gone.
I'm a bit afraid that the authorities won't do anything. My previous attempts at disclosing the family secrets haven't yielded a great deal in the way of results.
Posted by octopusprime on November 12, 2004, at 20:25:35
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
(((dinah)))
this must be so hard for you.
that said, i think your plan (of talking to the doctor, then mom's family and pastor) is a good one.
best to start within the family and then take the hard line route.
can you speak privately with the caregivers that currently attend to your father's needs and ask if they have referrals to other organizations that can help?
your mother's behaviour is certainly shocking and weird. i can kind of empathize with her in a way - her husband is getting sick and dying, she doesn't feel like she's in control of her life, she's losing her health. your mother is digging her heels in and exerting the only control she can over her life, which is over how she spends her money. as disconcerting and awful as her behaviour is, in a way i can rationally understand it.
so i hope persuasion works. maybe stage an intervention? it might be more effective if your dad agrees that he needs more care, and can "gang up" on your mom with other agreeable and trustworthy relatives and friends. it's your dad's money too, and spending it on his health and comfort is worthwhile.
ps - how are the puppies? hug them for me. i am having puppy envy
Posted by coral on November 12, 2004, at 21:00:59
In reply to Re: Looking for advice - Gross warning » Dinah, posted by octopusprime on November 12, 2004, at 20:25:35
Dear Dinah,
I'm sorry for what you're facing.
Have you considered talking to his relatives?
Coral
Posted by JenStar on November 12, 2004, at 21:09:15
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
Dinah,
it feels good to read that you're standing up for yourself and your limits, and you won't be pushed around. If your parents have means (real estate!) then by golly, then they should take advantage of selling it to live in better health & comfort.It must be scary for your parents to let go of certain things, like privacy and money. I know that's hard to do -- to admit that you're in bad shape, you need serious help, and your family just can't provide it.
But it's necessary. I'm so glad you're taking firm steps to make sure the right things happen.
You ARE a good daughter to care enough to push the issue to make sure your father's health issues are addressed.
Please keep us updated on what you decide & how it goes.
I'm rooting for you!
Y;aaaaaaahh, Dinah!JenStar
PS - it wasn't gross, really. Just realistic.
Posted by Larry Hoover on November 12, 2004, at 21:10:08
In reply to Looking for advice - Gross warning, posted by Dinah on November 12, 2004, at 17:53:07
I'm so sorry, Di. This is a horrible position you find yourself in. It is not your fault that your parents are neglected.
In law, neglect is "...adequate food, clothing, shelter, psychological care, physical care, medical care, or supervision is not secured for the at-risk adult or is not provided by a caretaker in a timely manner and with the degree of care that a reasonable person in the same situation would exercise...."
I think you may be at the point where legal intervention is required, a conservatorship. Under the direction of the court, you or a trustee could be put in the position of securing adequate care for your father (and your mom, too, as I'm not sure she is getting what she needs). It can be set up in very specific circumstances, so that no undue dissipation of their assets occurs. But really, what did they save all their lives for, if it wasn't to provide comfort in their declining years?
Your dad can't look after himself. Your mom won't. You can't. The caregivers don't come in every day. Something has to change.
I hope you talk to an attorney specializing in elder law. Each state has their own guidelines, so I can't really steer you explicitly. Somebody needs to take over decision-making.
Good luck, hon.
Lar
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.
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