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Old 06-10-2010, 03:27 PM   #1
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I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED !

My aunt is in a Dementia / Alzheimer's side of a facility that has an Assisted Living on the other side of their facility. She is an hour and a half from where I live and had lived an hour from me my whole life before she started having health problems that started with cancer that almost immediately afterward started with dementia. Anyway, suddenly I received a letter from her facility that her bill was going up $200 for her care. It was for her "incontinence" issues that had changed and THEY had never bothered to CALL me or Email me - which the administrator of this unit, whose OFFICE is outside my aunt's DOOR - has exchanged Email with me in the past and vice versa about issues on either side with my aunt. WHY this time she did not bother to let me know THIS TIME, as : It apprears that my aunt is putting NEWSPAPER ON HER BED AND DEFECATING ON IT ! No PHONE CALL about it. NO email about it, as we've used to communicate in the past..... Instead a letter not being clear about the issue and indicating that he bill would then be going up $200 / month !! I called down to the place and I was told just WHAT my aunt was doing. I was APPAULED. I have NO other members of the family with this illness and so I wasn't prepared I guess, but had I received a phone call to talk about it - but no, let's just add onto the bill and let her continue to do this.

The person then suggested taking the ROOM KEY from her. I thought, "HECK YES !" She said but how my aunt likes spending time in her room... I thought well, the heck with THAT. I told her "I don't want the NEXT thing to be her spread it on their WALLS". So she said they would try it. Later, I tried calling the person who runs the unit to find out why I wasn't notified before increasing her bill? She was out and so I asked for another administrator for the WHOLE facility there. I brought up about taking my aunt's key : to which she stated that by STATE LAW ( I'm in PA ), they CAN NOT take the key from her as long as she can understand WHERE her room is. Can you believe that ? I told her, "Yeah, she knows where her room is and she KNOWS to POOP on her BED". Then I told her how the other person I spoke to earlier - she is in charge of the Clinical Care of my aunt's unit, said they would TAKE the key from my aunt, well, this ADMINISTRATOR suddenly goes, "Oh, OKAY"..... Someone tell me. This is an Alzheimer's/Dementia unit with RULES as far as letting them have KEYS? You can't get OUT of the unit without a CODE ??. I already woke up with a migraine before getting this letter this morning. Anyone out there want to CHEER me up ? I am so mad right now ....

 
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Old 06-10-2010, 04:24 PM   #2
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

Excuse me, but do you have compassion for your aunt pooping in her bed? It's not coming through here. What is your real issue?

Last edited by moderator2; 06-10-2010 at 05:08 PM. Reason: please do not quote when you are the first to reply

 
Old 06-10-2010, 05:15 PM   #3
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

My ISSUE here is the FACILITY. It seems they only care about $$$. I have been SO proactive in my aunt's care for SIX YEARS now (even though before she got the dementia, for the first 50 years of my life she was truly NASTY to me a lot of the time and surely had some undiagnosed personality disorder) and upset with this facility and previous ones when they were not - I could write a laundry list. And it is very hard with living as far away as I do. If they can email me about other things, surely they can alert me to my aunt doing this, no ? For them to not contact me in my eyes is ridiculous. They said to me, 2 different people said this today to me - it must be because we see this all the time... Well, the FAMILY not LIVING with this person does NOT ! That is, unless they are TOLD. My aunt's disease is progressing and I would like to know that it has taken a drastic turn. I would not like to suddenly visit her and be surprised by something ELSE someday they aren't telling me when she opens the door... Even though my aunt made me cry with her "cruelty" the Thanksgiving 3 months before her cancer diagnosis, I STILL stood by her through all her illness(es) while another woman PREYED upon her to get close to my aunt. The SAME one my aunt threw in my face that Thanksgiving about how wonderful she was... I'm not looking for a halo here. I just want a little help from these place you have to put your family members in. To CONTINUE to let my aunt do this kind of behavior, when taking the ROOM KEY would have been the most likely suggestion - it's demeaning to her as a human being and NOT contacting her family member to talk about the situation, who is the person signing the CHECK each month ???

Priceless.

 
Old 06-10-2010, 05:45 PM   #4
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

Sounds to me like you have a lot of unfinished business with your aunt, and I am not saying it's not deserved. Maybe being POA isn't the best idea if it causes you so much grief. Is there an attorney that can step in and make life easier for all?

 
Old 06-10-2010, 08:35 PM   #5
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

Unfortunately, Mollie, what your aunt is doing is expected with this disease. She doesn't understand what she is doing is wrong. My mom lately has been depositing her used toilet paper around her apartment...into anything that is a receptacle of any sort... Be it her waste can or her sock basket. She also flushed the toilet BEFORE she goes. I doubt it will be very long before I get the same news you received.

I'm sorry you have to deal with this...none of this is easy, for any of us. As to the facility not notifying you, well, what can be said other than they didn't do it. They dropped the ball. But that still leaves you with the problem. I guess I want to tell you to not let this drive you mad. What's done is done. This is a long drawn out process in dealing with our loved ones. So, let them know that you are upset with the lack of communication and that you expect it to get better in the future.

My mom's facility is so used to the children of their patients not being involved that they sometimes forget to inform me of things even though I am there 3 to 4 times a week. It has taken persistance and a little grumbling from my husband to have things handled in a different manner.

Keep the lines of communication open with them the best you can.

Again, don't let this consume you. You will need your strength for the next crisis headed your way. And believe me, there are always crisis raising their ugly heads...I know!

Your aunt is lucky to have you.

Good luck,
Meg

Last edited by meg1230; 06-11-2010 at 05:06 AM.

 
Old 06-10-2010, 11:15 PM   #6
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

Mollie... take a deep breath and calm down a little Having worked on both sides... in a facility and with parents in a facility I know that sometimes what should be done just slips though the cracks. I have done it and it has happened to me. What IS important is that your Aunt is getting quality care.

As for the pooping on the bed, that is not abnormal at all and they probably see it more than you want to imagine. Mom went through that. On the bed, in the chair, in the trash can, in the laundry hamper, on the shower chair. The sit and poop remained but not the appropriate place to go. Just like you there was a billing increase for incontinence. I just happened to ASK, when I found out Mom was having incontinent accidents, if there would be a fee increase. It was on the Director's list of things to do but considering Dad fell and ended up in the ER and another resident was initiating Hospice care, and there was a new resident crying constantly and wanting to go home, and on an on, it didn't rise to the top of the list. I went by the idea that residents come first and try to remember that when something slips through the cracks like a billing increase notification. You yourself said they had been good about keeping you informed before.

Perhaps you could ask for a monthly update. I receive a monthly update noting all vitals and any changes in care or health. It's a computer form they fill out and mail me a copy. They have to update the care plan periodically and you can also ask for a copy of that. But remember, symptoms change rapidly at times and sometimes there is either not time to inform or times when the behavior is sporadic and they want to be sure it is a true change or just a few incident.

Now about the key. Yes, at least here in NC, there are patient rights. They are entitled to certain considerations. That does have to be balanced with their safety and well being. Within the locked unit they should have some freedom to be and do what makes them happy. They should be able to stay up all night if they want to. The rest of us sleep at night but that should not mean that my Mom can't wander all night if that what makes her happy. Yet you don't want a knife at my Dad's plate if he gets angry at somebody. Yes, I did have a debate with the staff on that one. I did arrange to have Mom's room door locked most of the day. She would not come out of the room and socialize otherwise. So when she left for breakfast the door was locked until after lunch. Eventually she began to like it better out of the room. But you have to give the facility valid reasons for the change and the restriction placed on the patient. With Dad I requested they leave him in bed all day if that is what he wanted because of his spin degeneration. We came to a compromise and basically Dad got up when they could encourage him to do so.

Most times it just take calm logical conversation to figure out what is going on and how to fix it. I will tell you that the unit director will be much more informed than the facility administrator. I'm not surprised at the difference in the opinions you received and the turn around of the Administrator. She is probably responsible for all units in the facility and the Key issue answer she gave was more appropriate for the assisted living than the ALZ unit patient. The other thing I try to remember is that they have many residents to take care of who are on many different levels. You have one Aunt and I have one Mom in a facility. We are funnel focused on them while the facility is trying to take care of everybody. So yes, everything you mentioned has happened to me but I will still say without hesitation that the facility Mom is in takes excellent care of her. If I really want to know how Mom is... I go ask the caregivers!! The first person I ask to talk to is the caregiver that is taking care of Mom, then the lead care manager. only then would I talk to the director or the Administrator because they are the least informed about Mom's specific care

So what about once a week e-mailing the director and asking if there are any changes in your Aunt. Ask for a monthly update. Be proactive rather than waiting for them.

Love, deb

 
Old 06-10-2010, 11:42 PM   #7
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

I just hope that the administrator I talked to and the one running the unit that comes back in tomorrow don't have their usual morning meeting and both decide that this is not what the state will "allow" -and give my aunt her KEY back.. I mean, that my aunt knows where her room is what is based on that THEN she is allowed to have her ROOM KEY ??? This is also a HEALTH concern as well. I know my aunt, and I have a feeling that she is not washing her hands after this, in fact, in her bathroom, there is only HAND SANITIZER. Like THAT is going to kill human waste. So if she's getting poop on her hands doing "it" on newspapers on her bed, like is she even THINKING of going in the bathroom then and using HAND SANITIZER ?? afterwards, if she's confused already?? How unhealthy for this facility is that ? And I KNOW my aunt is going to be ONE unhappy camper at them taking the key away. See, when she left her previous assisted living facility, the nurse their LIED to her and said there was nothing wrong with my aunt, when I KNEW she had problems, her doctor had her on Aricept, but because she passed that stupid mini-mental test they wouldn't believe me that my aunt had problems. She cut her hair down to her scalp - still ignored me and but said they would take the scissors from her then didn't then LIED saying they never offered in the first place. A year later, when she cut the head and arms off a doll, they couldn't WAIT to have her leave. Then they believed me. Inbetween they hung up the phone on me and said I was holding my aunt back when she got lost on an outing in Kmart and felt with her walker out of exhaustion of trying to find the front of the store?? (she only was out of the hospital a week). And her dr. was of no help. Getting lost in the store, cutting her hair like that, but as long as she passed that stupid test - to which my aunt scored 28 out of 30 ! being on Aricept don't forget. Everyone was my enemy - the dr. was no help, suddenly she started throwing her CLOTHES out and other things and the assisted living place started to see maybe I wasn't so "stupid" after all. But that "nurse" buddied up to my aunt and when I was going to try to get her into a place, didn't she sabotage it and TELL my aunt that she was being TESTED FOR DEMENTIA BECAUSE OF HER NIECE - ME. Well, talk about going behind my back. I was told that my aunt didn't meet the criteria. I wonder why......Gee, 6 mo. later it was the DIRECTOR of the place making calls HERSELF to get my aunt out Yesterday, if you catch my drift, after the "doll" incident... I could write a book. So, my aunt got MOVED to her current facility believing her doctor sent her there but with no reason. She wouldn't believe ME. The nurse lied to her what was wrong with her and also stabbed ME in the back. She STILL won't believe me now and YET she knows she can't leave the place and is locked in. ?? Bureaucrats !

 
Old 06-11-2010, 02:57 AM   #8
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

My sister in law's Mom, while still living with them at home, went to the garage and defected on the garage floor.

My Mom lost control of her feces while still living with me, and I came home to find mounds of poop on the bathroom floor, and tracks of it all over the aprtment as she had walked in it.

What I am saying is that this is not unusual for an Azheimer victim, and the facility is allowed to charge more for the cleaning up they have to do.

Eventually they will put her in diapers and the problem will be solved.

Meanwhile it is right and kind for them to treat her as a human being and not lock her out of her own room, which is probably the place - the only place in the world now- where she feels at home.

Ths is not being done to annoy or shock anybody, it is not a sign of some other mental aberration, but just a part of Alzheimer care. That is probably why they did not call you - they are used to this symptom. By the way, nothing can be done to stop it. Once she gets used to wearing diapers, she will probably stop using newspaper. Think of it this way: not knowing where the toilet was or how to get on it, and not wanting to soil her bed, she did spread newspapers on it - so she has not lost all sense of cleanliness.

Think of the workers in those homes, or the loved ones who take care of such a patient at home. My sister in law, patiently cleaning up the garage floor over and over again. Myself cleaning the whole house, tearing up and discarding the bathroom rug, all the time NOT getting angry at Mom, just trying to find a better solution (a few months later the Nursing Home took over).

I hope this thought is not an insult to anybody- but think of all the dog lovers who daily walk their beloved pet and pick up his fecal matter to put it in a baggie and dispose of it. It's part of loving their pet. Or the billions of Moms and Dads and Gran dmas who lovingly change the diapers of the babies in the family. Think of the old aunt as a baby. That is the stage she is back in. It isn't her fault; it isn't the facility's fault.

You are stuck with being her POA and taking care of her affairs - but be glad you are not the one who has to clean up after her!

This is hard, and every one of us here has had or now has the same problems to deal with. You are not alone. I sympathize with you and with your Aunt.

Love,
Martha

 
Old 06-11-2010, 08:32 AM   #9
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Re: I'm POA from my AUNT with Dementia who is in a Facility and DEFECATING ON HER BED

I get it Molly.... been there done that got the T-shirt and I truly didn't want it. Mom had a doctor that glossed over the problem because she scored a 28/30 on the mini mental. He told me that Mom could drive if she would just focus a little more. I slapped my forehead on that one to see if I was in the real world or Mom's world. That was after I had taken Mom to a Memory Assessment Research Service that does NOTHING but test for dementia and had given me a diagnosis of moderate to sever dementia consistent with ALZ. Mom was not in the beginning stages.... she was well into her disease and her doctor was telling her to focus more. Sometimes you do feel like you are fighting an uphill battle and everybody is working against you. Yes, sometimes even the professionals are blinded to the reality of a situation. You are your Aunt's advocate... that is your job. Sometimes you have to fight for what she needs. You have one patient and the rest of them have many

We have to distinguish between intentional lies and misgivings, wishes, and inability to accept reality. Some are truly blinded from the truth. They are in intentionally lying but rather telling you what they believe even if it is not what you are seeing. My Mom could fool the best of them. until she became incontinent and lost her ability to communicate, she could fool people into thinking she was ok. It took a lot out of her and somebody paid the price later, usually Dad, but she could put on a good front. I get the feeling you are reality based and not prone to wishful thinking. Many function on wishful thinking.

As for your Aunt, she is going to believe whatever is stuck in her mind. In her mind she is fine and the rest of the world has gone crazy. Mom used to tell me that. She didn't know what was wrong with the REST of those people. She was fine and they were making her life miserable. If your Aunt is ready for a locked unit she is probably in that mindset. So it really doesn't matter who tells her what. She doesn't remember anything except what she deals with every day. She is in the moment. There is not a resident in a locked unit that wants to be there. They each blame somebody for their plight. It is usually the one that cares for them the most that gets the most static. That is because you are there and somewhere in their confusion they know they can lash out at you and you won't abandon them. I "lie" to my Mom every time I see her. But I don't consider it lying. I consider it giving her what connects to her reality in a way that she can be happy. She doesn't remember it after it is said but in the moment it satisfies. I would never consider explaining to her why she is there. I would never tell her that she has ALZ and will never go home. She can't comprehend it. Beyond that she will not remember it because it doesn't fit in her known reality. She won't remember it but is left with a bad feeling that will linger. For a while (because there was a jacuzzi tub) I convinced her it was her long desired vacation! Then she was there because Dad needed the extra care. Finally it has become her familiar place to be and she's ok with it most days. So just know that what your Aunt was told doesn't stick. What you see is her only way of dealing with the reality that SHE sees.

Yes, patients do have rights. With mom we did give her a key to her locked unit apartment and she promptly lost it. At that point we just told her we were getting another one made.... for weeks. She eventually forgot about it. But then there was Dad and the van keys. We did let him have those but the van was 100 miles away. I finally solved the room key problem by giving her a key that didn't work. She would NEVER say that she couldn't unlock the door So she would go back to the room, work with that key for a while, and then wander away. Eventually she stopped trying. Yes, you do need to balance safety and health with patient rights. But ask I said before come up with a rational logical argument based on safety and health to approach the administration with. A little secret I have learned... professionals are trained to deal with over the top emotions. They can send you packing with your tail between your legs even though you know you are right. But calm rational logic throws them. Be firm in what you want, back it up with logic, facts, and indisputable outcomes, and stick to the facts. It will take you far!

Yes, it is frustrating to a limit that nothing else can reach. You have found the right place to vent your frustrations. Just don't let them get the best of you I wish I knew the number of times I have rolled my eyes and just approached the problem from a different angle. You will never FIX this problem Molly... all you can do is manage it the best you can.

Love, deb

 
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