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Knowing when to place in facility????


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Old 08-04-2013, 07:14 AM   #1
SherryAnne
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Knowing when to place in facility????

Hi all,
I recently had to step in a help my aunt (never married...no children...lives with brother) who is 85 years old. She has progressively gone down hill in the memory department and started having hallucinations. It became unbearable for her brother (84 years old) to take care of her.

The problem here is she is still aware of a lot of things but yet she definately has severe memory loss according to the doctors. I don't live with her so I didn't realize I guess how bad the dementia had gotten lately. According to the doctors and psychiatrists, I was told it was not safe for her to live without someone giving constant care. Her brother feels he can no longer handle the situation.

She is in a dementia personal care home but I am feeling terrible about it because she keeps asking to go home. She has put all the blame on my uncle and me and is very angry with us. I can't even have a nice visit with her and she just starts the same conversation every time......"Why did you do this to me? I want to go home. There is nothing wrong with me."

I just don't know how to handle this anymore and would like advice from anyone out there who has been through this.

 
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Old 08-04-2013, 08:42 AM   #2
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Re: Knowing when to place in facility????

SherryAnne... first thing you need to know is that you have made the right decision for your Aunt. She is not capable of living on her own and her brother is not capable of giving her the care she needs. Kudos to him for recognizing that fact and to you for taking the steps necessary to get your Aunt the care that the doctor recommend. No, it's not easy. It is not what anybody wants. But it is absolutely necessary for all involved. Yes, we do second guess ourselves, especially when the "demented behavior" berates us and tells us how horrible we are for doing this. Notice I didn't say your Aunt... but the "Demented behavior"!

What your Aunt is doing now is absolutely typical demented behavior. She can not understand why she is not at home with her brother. The damage to her brain has taken away her ability to reason, use good judgement, and make rational decision. All it is saying to her is "I don't want to be here so I am going to make life miserable for those horrible people that put me here!" I am not sure whether it is a good thing or a bad thing but the dementia actually prevents her from understanding the extend of her disability. In her mind, what she knows is real. It is as real as what you know. In her mind she is ok and you are the one that has gone totally bonkers! You know this is not true but that is not HER reality. She walks around the corner, looks around, has no clue where she is or why, and expresses her distress in the only way she knows how. She lashes out. Her ability to discuss and rationalize are gone. She just lashes out at what is not to her liking. As I said before, I never knew a dementia patient that said... "I'm confused so please put me in a care facility!" It just doesn't happen Just know that you have done exactly what your Aunt NEEDS. It may not be what she wants but it is what she needs.

My Mom was the very same except she packed her belonging every day, threw items over the court yard fence, constantly tried to get out, and was combative/aggressive with the staff! She disowned me, threatened to throw me out of the will, and berated me for months. She gave new meaning to "If Mom is not happy, nobody is happy!" She even wrote notes in all her Christmas cards telling her friends she was being held prisoner and if they loved her they would come rescue her and help her escape. And the day she called 911 telling them she had been kidnapped and her van stolen! She wanted Three Men and a Truck to come get her and her stuff.

What I can tell you is that it is all based in anxiety. The anxiety of not understand which is a product of the disease itself. It only clarifies that she is exactly where she needs to be. Yes, she does have emotional distress but taking her "home" is not going to fix that. I actually took Mom "home" several times to visit. She had no clue it was "home". At "home" she ask to go "home". I learned something important. "Home" is not a place. It is not back in the house with her brother. The "home" she is looking for is in the past when she was not confused. You can't take her there!! It is no more.

My suggestion is to talk to her psychiatrist and explain to him what is going on. She is in emotional distress. He can prescribe medication for her anxiety that will take the edge off. You do not want to "drug" her but you do want to give her some relief from her emotional distress. Mom's was bad enough that she spent 10 days in a Geriatric Behavioral Med Unit that specializes in dementia behavior. It was the difference between night and day. On the right medication Mom found her smile again. All you want is for your Aunt to be content in the right place to give her the care she needs. She is in the right place to get the care she needs. Now you just want her content. The doctors can help there.

Also know it is a phase that most go through and it does not last forever. Though at times it does seem like forever But it is better to relieve the anxiety if you can. So please call her psychiatrist and let him/her know what is going on.

My heart goes out to you because I know how you feel. Just know you have made the right decision!!!

Love, deb

 
Old 08-04-2013, 10:58 AM   #3
SherryAnne
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Re: Knowing when to place in facility????

Hi Deb, thank you so much for the quick reply. First, I am so very sorry to hear that you have to deal with this as well and I am sure it is much harder when it is your own mother.

I took care of my mom (lung cancer) in my home until she passed away just five years ago. It was extremely traumatic for me and I actually I am still re-adjusting to be part of life again.

My aunt was getting out of control at home and that is why I was asked to intervene. She was having hallucinations and was very obsessed with them and was angry and agitated most of the time. It made her a totally different person. That's when my aunt also ended up in a Geriactric Behavorial Unit of a hospital for a couple of weeks. They put her on medications for dementia and hallucinations. It took a while for the meds to start working so that is why she was placed in a facility just a week ago (seems like forever though). So now that she is much more lucid, it appears as though she should not be in there. She says she will take her medicine but I don't believe her. When she gets mad at her brother she refuses to take any medication at all. I am afraid that if she would go back to her home to live with her brother, it would just start all over again because she would probably (not 100% sure) not take the medicine if she gets mad at him. Do you see the dilema here? Ugh.... I am just not convinced after seeing all the "residents" in the home that she is bad enough to be there.

Last edited by SherryAnne; 08-04-2013 at 11:00 AM.

 
Old 08-04-2013, 11:32 AM   #4
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Re: Knowing when to place in facility????

SherryAnne... please take my word that you have done what is right for her. Please do not bring her home and repeat what you have already done.... and that is exactly what will happen. The dementia is still there. The inabilities and the dementia behavior are still there. They are just controlled with medication which is administered by somebody other than your Aunt. She thinks she is fine. She gets home. Something annoys her. She becomes defensive and combative. She refuses to take her meds because in her mind that is getting back at her brother and/or you. That thought is totally irrational because it only makes her worse. And here you go again

Yes, she appears "better". Her level of anxiety has decreased because of the medication. Anxiety will enhance demented behavior and throw her completely off balance. Yes, she thinks she is fine but she is not. This is the evil in this disease. It is not like the cancer that you have experienced before. Mom could have conversation and know what was best for her. With Dementia, your Aunt only feeds off the moment and irrational judgement. But she BELIEVES!! That is what makes you doubt. She is so very convincing Her view of life centers only around herself (part of the disease) and she can make you feel guilty, doubt yourself, and dwell on what might be while you regret what you have done. It's a perfect storm to send you into an emotional tail spin when in fact you KNOW you have done what you NEED to do!!

Actually I had both parents with their own dementia. They overlapped for years. Dad (Vascular Dementia) was happy to be where he was. The problem with him was his hallucinations, delusions, and need to go act upon those. He would wander away. Mom (Alzheimer's) was NEVER happy... from day one she was in distress... until the right medication was found. It took several attempts to get her medication right. Just because your Aunt has been in a Geriatric Unit once, if she becomes distraught, ask for a med adjustment because of her current distress. Every dementia patient is different and their needs change with each level of the disease. Please listen to your fears that you expressed... she will be back!

Each patient in the dementia care facility is at a different level in their disease. Most start out, "not convinced my loved one is bad enough to be there!" You see the ones in the wheel chairs, those that can not talk, and those in the late stages of the disease, and determine that my loved one is "not that bad!" But that is exactly where your Aunt is headed. Mom entered the locked dementia unit walking, talking, a healthy little lady. She looked more like a visitor than a resident. But she fell into that category of people that needed to be there because of behavioral reasons. Fact, most people who go into a dementia care facility are there because of behavioral reasons. It all depends on when the behavior can not be controlled at home. So your Aunt may not look like but is like the rest. I will also say that once Mom went through behavioral med (after her admission to the dementia locked unit) she did become content. She no longer looked or acted like she belonged but she did... it was the medication that had created the contentment. If it was not given at 7 am and 7 pm every day she would go right back to her state of anxiety!

I do encourage you to talk to her doctor and psychiatrist. They can help with her anger and anxiety that she is experiencing now. You also have to develop a bit of a thick skin to her antics. You have to find moment of joy and humor in the day. Learn to distract her. Validate her anxiety. Tell her that you know she is not happy. Then give her some hope. Tell her you will talk to the doctor and see what can be done to help her. You and I know that is probably medication changes but at least it gives her some hope. At that point you might have a good moment with her. Then you can do it all again tomorrow. I told Mom she was on that extended vacation, where she didn't have to cook, that she wanted all her life. I told her that she was there because Dad had to be there for his health and I knew she didn't want to be separated from him. I told her she was at a spa and took her to the whirlpool tub. They all worked in the moment and that's what you have with your Aunt... the moment

Cute story (real)... Mom was in one of her "I have to go home" rants. Dad would get anxious when Mom was not happy and started asking why they could not go home. The little lady across the table put in her two cents worth saying she had to go home too. With in a minute there were probably a dozen residents standing around exclaiming that they all needed to go home. My comment to all that.... "So do I!" Let's call a bus! I took out my phone and faked a phone call to the bus company. Then we all sat down to wait for the bus. A care manager turned on the radio and I started dancing with Mom... several joined in dancing and singing. Supper showed up... and the bus was forgotten!!

Call her doctor... and know that what you are experiencing is typical and normal in the world of dementia

Love, deb

 
Old 08-04-2013, 05:16 PM   #5
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Re: Knowing when to place in facility????

i am going threw the same thing. my mom has been going threw this the last few years. she was not eating hearing sounds and music, and forgetful. but sometimes she seems just fine. i ended up putting her in a afc home, she did real well and seemed her old self. she hated being there, and said the other women were crazy and wouldn't talk to her, and she didn't no why she was there she was fine, she also seems to put the blame on me. she also has a excuse for everything. so i let her go home and she was fine for about 2 mo. and now she is getting back to where she was. forgetful. hearing sounds, unsteady walk. she will not stay at my house, won't have in home care and says she won't go back to the afc home. so i have to start all over. the guilt is terrible as she can still clean and even made a pie, so she thinks she is fine, she is my best friend, and i have to learn what is best for her. and not let her make me feel guilty

 
Old 08-04-2013, 06:34 PM   #6
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Re: Knowing when to place in facility????

Dianalynn..sorry to hear you are going through this as well. It seems to be a typical story. I can give some explanation to why they seem "fine" in the care facility. Basically it is because most of the responsibility they had at home is no longer on their shoulders. They do not have to know when medication should be taken. They do not have to figure out when and what to eat. They do not have to worry about food in the house and bills being paid or who that is on the phone or at the door. They are not alone and there is always somebody there to help them, remind them, and prompt them. If they don't want to do something it's ok. With such limited responsibilities, they are ok. If they go back home it all starts again. They become overwhelmed, confused,... and you know the rest... right back to where you were.

They do pile on the guilt and we want them to be happy. Yet we know in our heart that they are not safe at home. This became clear to me the day Mom put a rag on top of a lamp, left the lamp on, and the rag smoked up the house as it smoldered. Did she leave the house and call 911? That is what you would expect if you saw the house filling with smoke. Nope, she wandered around the house looking for the source of the smoke. Thankfully a neighbor noticed the smoke and got her out of the house!! She made all kinds of excuses and I bought into her desire to stay home and all her excuses. It was not but a month later that Dad plugged the vacuum cleaner into the battery back up for the computer. It shorted out and started a small fire. More smoke, power flickering on and off, and again they are both wandering around the house, flipping electrical breakers, and finally Dad just sat down in the den with the fire under the desk! Bless that same neighbor who got them out and called the fire department. If Mom doesn't know how to get out of the house when it is filled with smoke? It is not the every day routine that is the problem. It is the unusual. It is the situations they can created unknowingly and then not know how to deal with them that is the problem.

Mom seemed ok to most. Yet I walked in at supper time and they were eating cereal... with spoiled milk on it. I decided to check the pill boxes and figured out that Mom had actually taken Dad's meds, including his heart medication. Another time Dad took his morning meds three times. He didn't know what day it was or if he had taken them so he just kept taking them. When we cleaned out the house, burned pots in dresser drawers in the bedroom Mom broke her arms and we still don't know how she did it. They couldn't get in the house, so they broke the door glass, reached in, and unlocked the door. Not sure which one did it because they both had cuts.

Mom would not allow anything in the house. We had an angle which we told her was to help Dad. Mom decided she was spying, hit her twice, and ran her out of the house. Dad was not supposed to be driving. If Mom didn't want to drive she just let Dad do it. EEEKK When she was no longer allowed to drive she refused to leave the house unless she was driving. She would sneak out and off she would go. On one occasion she came back, and came in the house. We started looking for the keys and could not find them. Wait, the van was still running. She had gotten out and forgotten to turn off the van. Her comment..."It would run out of gas eventually!"

But for all appearances to most that were not there on a constant basis for days on end like I was... Mom was FINE! According to Mom... she was FINE! Now that it is all said and done.... my ONLY regret is that I did not place Mom and Dad in a care facility sooner They were actually better off emotionally and physically... even when they wanted to go home!

I also battled with the guilt. Was I doing the right thing. Mom did heap on the guilt. She hated me for I was doing to her. She had every reason and excuse in the book. She let me know how much better she would be at "home" and how horrible I was for leaving her in that horrible place. But again I will say, I am glad I stuck with my decision when I made it and my only regret is that I didn't do it sooner! That is my experience and hopefully something in that will help you both. Remember, this is not just a memory problem but a brain disease that causes brain damage that affect every part of the person's cognition from behavior, to judgement, to their ability to successfully assess a situation and react properly.

Love, deb

 
Old 08-05-2013, 03:46 PM   #7
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Re: Knowing when to place in facility????

Deb and dianalynn.....thank you both very much for giving me this insight. It sounds like the exact same conversations that happen with my aunt....and yes, she too has every excuse in the book because she says she can still clean the house! Her brother visited her on Friday and she had him convinced she should come home that there is nothing wrong with her. So just to satisfy him, my husband and I went to see her last evening. I told my husband she "hates" me as I am the blame for her being there and my uncle is the blame for her being "driven crazy". So during our visit she got so out of control with anger towards me and I had to leave. She said to "butt out of her business and she never wants to see me again". I know that is the disease talking but I won't go back for a very long time so that I won't upset her.

When I came home I called my uncle and told him if he should decide to bring her home that I would NOT take any part in that as I believe she needs to be there. And ladies....you are right....the same thing would just happen all over again. I also told my uncle I would NOT have part in taking her back to the facility when (not "if") she needed to return because she was out of control.

It is so good to know from others experiences in order to help subside my guilt and know that I have done the right thing for her to be safe.

The facility called me today and said she was extremely agitatated today (because of me) and they were going to call for a psych consult. I thought that was probably a real good idea.

This dementia is such an ugly monster and completely wreaks havok on everyone and everthing. At this point I just need to distance myself not only for her sake but my health as well. How sad.

Oh, and Deb, I absolutely LOVED the bus story. thank you for sharing that with us!

Last edited by SherryAnne; 08-05-2013 at 03:53 PM. Reason: add information

 
Old 08-06-2013, 05:52 AM   #8
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Re: Knowing when to place in facility????

Good job SherryAnne!! Your Aunt (as she showed by her reaction to you) is right where she needs to be. Yes, a psych consult is in order. Hopefully they can help her to a more contented time. Yes, this disease is a monster. But one that you can deal with.... given information and patience Your Aunt is in a care facility where she needs to be... now let them deal with it for a while and take that break you need.

Love, deb

 
Old 08-06-2013, 06:31 PM   #9
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Re: Knowing when to place in facility????

thank u for your story, it seems like a repeat of mine. after the last two days my mom has had two falls, plus she told me she thought she swallowed her hearing aid battery instead of her pill. so a trip for ex-ray dept. thankfully no battery was found.we had a talk and she agreed to go back to the home, so today she went back with no problem. hopefully i will still be strong when she wants to go home again. i think i was in denial, when she seemed better, will keep reading everyones stories. thanks for the site

 
Old 08-06-2013, 08:03 PM   #10
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Re: Knowing when to place in facility????

Dianalynn... so typical We all do seem to go through this. We want to listen to their excuses and reasons as if they are logic based and rational. Yet at some point we figure out it is the product of a confused brain that is convinced it is right. They can be so very convincing in their confusions. Glad Mom went back with no difficulties. You might check to see if your area has mobile x-ray. I used them several times. The facility also had in house lab work available. Saved a lot of trips out for simple things. Hope your Mom continues to adjust ..... and you stay strong!

Love, deb

 
Old 08-11-2013, 11:37 AM   #11
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Re: Knowing when to place in facility????

Hi ladies,
Was just wondering if either of you (or anyone else out there reading this post) can also give me insight on how to explain to my aunt WHY she is in the dementia facility. I always try to be as honest as possible but nothing really seems to be working to satisfy her questions of why she needs to be (what she thinks is the hospital) even though it is a facility. As always, she thinks there is absolutely NOTHING wrong with her or her mind! I am really exhausted by this question and no matter what answer I give, it's never good enough. This is sooooooo frustrating to me.

 
Old 08-11-2013, 01:49 PM   #12
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Re: Knowing when to place in facility????

Sherryanne I went through a stage when I questioned my own ability as mum was so convincing in what she said!! When I could not keep her safe was when she moved to a facility and I told her that it was for her to have a break and not have to worry about cooking/cleaning/worrying about others for a while. Your aunt will settle. In many things you have to forget what the truth is as it only causes upset. I hope all goes well.

 
Old 08-11-2013, 02:01 PM   #13
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Re: Knowing when to place in facility????

SherryAnne, think about it! You are trying to reason with someone with dementia. I found that this is one case when honesty is not always the best policy. Yes, we want to be honest and fully disclose all the particulars surrounding the situation but what you will get back is exactly what is happening with your Aunt. Remember that her abilities are compromised by her dementia. Not only her memory, but her reasoning, her logic, her ability to assess her situation, and her ability to use good judgement. Yes, she does believe that there is nothing wrong with her. In her mind, what is there is her reality. Anything that does not fit her reality is chaos and that is what you are trying to do. You are trying to introduce your reality into her thought process and it is not working. She knows she's fine and you are the nut case! She knows what she believes, and anything you say that is counter intuitive to her believes is going to be a point of contention. You have to go with what she gives you and go from there, using the dementia and the clues she gives you as your guide.

If she thinks she is in a hospital then just tell her that she needs to stay as long as the doctor says she must. If she argues, then tell her you understand her frustration and will check with the doctor. That validates her frustration and lets her know you are on her side. You and I now that she will not be going home, but that's ok. Tomorrow you can do it all over again because she is not going to remember.

For a while we told Mom that she was in AL because Dad needed the additional help. For a while we told her that she was finally getting that long wanted vacation where she didn't have to cook. I threw in the spa aspect and would take her to the whirlpool tub to validate the spa idea. When she had some physical ailment I would give her the doctor excuse. As soon as the doctor says it's ok. These excuses last only as long as her memory.

What you are after is contentment in the moment. If you try to explain why she is where she does not want to be you only create anxiety and anger. If you argue with her that she needs to be there when she doesn't think she should, you create anger and resentment. Validate her feelings of frustration. Acknowledge her distress. Then assure her that you are doing all that you can to help her. Just don't explain what that is if you don't have to. That much is honest and truthful. Then if she needs s bit more... just make her content in the moment

Love, deb

 
Old 08-12-2013, 05:42 PM   #14
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Re: Knowing when to place in facility????

thanks for the info ladies...I am now researching dementia so that I am better able to handle this. I appreciate all the first-hand insight as I find that to be of most value to me!

 
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