Hello everyone,

A month or so ago I posted about my mom and the situation she is in. Needless to say things haven't changed much until today and now I need some help.

To bring you up to speed, my mom was diagnosed 4 years ago with AD and has progressed pretty rapidly from being independent, alert and oriented just 19 months ago to being totally incontinent, incoherent, doesn't know or recognize family members most of the time and has become physically aggressive when anyone tries to redirect her or provide personal care to her. Up until June of this year she lived in an ALF then moved to a SNF. She was at the NH about 1 1/2 monthes then was sent out to a mental health unit for a psychiatric eval because of "behaviors" slapping at staff and residents.

Presently mom is in a mental health unit in hospital and has been there since July 28th. On Aug. 14th I was notified by the social worker that she was ready for discharge and would be transfered back to the NH. Later that day I was called again and informed the NH refused to take her back stating there was no change in her behaviors. When I called the nursing home I was told they couldn't safely accommodate her with her tendency to have aggressive behaviors and because she had exit seeking behaviors. What did I miss here, these were the reasons she was supposedly sent out for and treated for to the point the doctor felt like she was ready for release.

And so began the roller coaster ride we have been on since Aug. 14th looking for placement for mom. Believe me when I say it has been exhausting, I have spoke with the Alzheimer's association for this area several times for assistance and guidance, they are a wealth of information. But sadly no luck in placement. First the problem is "behaviors" and second it is the fact that she has now had to apply for medicaid.

Mom has been at St Elizabeths Hospital now in the mental health unit for over 60 days. And in all this time she has been ok to be transfered out as soon as we could find a place that would take her with her medicaid. But today all of a sudden I'm told that a petition is being filed in the courts on Monday for a 60-day Mental Health Evaluation and she will be transfered to a state mental health hospital. I ask the reason for this and was told that "the doctor has done all he can for her and doesn't feel like he help her". Hello! what am I missing? He took her off all her meds at admission and reintroduced Abilify a new drug to her, Depakote also a new drug to her and put her back on Exelon patches which she had been on in the past. He's adjusted the strength of these over the last 60 days but made no other changes. I am a nurse so believe me I have asked REPEATEDLY are there any changes in her meds any adjustments.

What can I do? I don't feel a state mental hospital is approriate or is it? Right now I am angry, confused, I feel lost and not sure what to do. I only want to best for her and I feel like everything is out of my hands and like I am letting her down. I'm sorry for rambling on, any advice is greatly appreciated

Thank you all so much for being here and caring.

Bobbie

Marjk had a situation kinda similar to yours, her Mom was in a hospital for medication adjustment for a long time, but no mention of a state mental hospital. Since nothing really works for her Mom, they're considering the possibility that she may have another mental disorder in addition to AD.
Could you have her discharged to your care and then you could take her to a different hospital? I don't think I'd feel comfortable with a state mental hospital, personally.
I don't know if my advice is possible or good, just throwing an idea out there.

I hope things work out well for you both.

Will there really be much difference between the care she receives at a state mental hospital and a nursing home? Can anyone here compare the two? What happens after the initial 60 days if she's not any better?

If you have no money to pay for the first few months of a NH...I'm not sure how much choice you are going to have regarding where she goes. Other posts here tell how difficult it is to move someone to some of the better nursing homes if they don't have any funds. It will be easy for the homes to declare that they can't care for her due to her behaviours..limiting any choice you may have.

Apologies, I just reread your post and realize you are trying this route. The one new thing that may be useful-- there are usually some NH's that are mostly medicaid-- they're required to take folks placed by the state. They're usually not elegant but may have good staff--

Here's where I just repeat what you know:
If the issue is exit seeking behaviors, she could go to a dementia unit in a NH-- all of which are secure/locked.

Being released from a hospital is the best way to get a bed for your mother in a NH (dementia unit) ...often two or three homes will make you offers. Medicare will pick up the cost for 100 days and many NH's will be satisfied with having these moneys as they wait for Medicaid to kick in.

Can you get access to her medical records? The sudden change in recommendation doesn't make any sense; maybe (especially as a nurse) you can figure out what's going on from studying the day to day records at the mental health unit.

Many thanks for the responses. This has been a very hard weekend for me, worrying about my mom, having such feelings of guilt for not being able to do more, it been almost more than I ever thought I could bear. I've been working this evening gathering up what papers I think I may need for the hearing in the morning.

I went to see mom yesterday morning and spent some time with her. As has been normal the last several times I've been to visit her she was sleeping. I did finally get her to wake up and I fed her lunch, she just stared off away from me and of course didn't talk. She mumbled a few words when she opened her eyes but nothing understandable. I did see a tear roll down her cheek, but again I couldn't get her to say anything. I just don't understand.

Has anyone had a loved one involuntarily placed in a state mental hospital? What was your experience like? I admit I am afraid and I guess my biggest fear is her being hurt or abused in some way and she not being able to tell anyone if anything happens to her. Mom is still very young (67 years old) and although I haven't seen her ambulate in a while, I am told by the hospital staff that she still wonders. I suppose fear of the unknown and being torn with quilt for not being able to care for her myself and angry at the fact that other family members haven't stepped in to carry a little of the load has just gotten the best of me.

Reading everyones post helps and I know I'm not alone. Thanks everyone for letting me vent, crying on your shoulder and search for answers. Wish us luck tomorrow.

Bobbie

Bobbie, I am thinking of you today. Please update us after the hearing.

UPDATE: Today was absolutely horrible. I went to the involuntary hospitalization hearing on my mom which was actually her just being dumped by the one hospital because they couldn't find placement for her.

The hearing itself was joke. My mom was brought in by a sheriffs deputy, God she look so lost, she had no idea why she was there. The social worker from the hospital was allowed to speak but I was not allowed to ask any questions or say anything. In less then 10 minutes it was over and it was ordered that she be taken from the court house to be committed to a state mental hospital.

So then the sheriff's deputy then has to take her to the new hospital and of course I follow to see that she is admitted and see what I need to do. Ok first it is an hour and half drive from where she was and almost 2 hours away from our home town. Second, it's a state mental hospital all my legal papers (POA, Living Will, and Health Care Surrogate) mean absolutely nothing and now I need to petition the court for Guardianship. Third, this hospital is the second oldest mental institution in the state of KY and it is the place that nightmares or horror movies are made of. It was dirty, it smelled, the beds OMG were from the dark ages. I was gave a quick tour and told my time was up I needed to leave.

I am so angry, hurt, scared for her, God it feels like my heart has just been riped out.

Oh, Bobbie, what a nightmare! I'm so sorry this has happened! It seems like the worst thing that we all fear.

There must be a social worker there, or someone in charge of her case. These hospitals don't WANT patients to be there forever, so I'm sure you'll find some staff members who will work with you to find a better placement for her.

I know it's horrible meanwhile, for you and for her. Please take strength from our caring and take it one step at a time. I'm sure you'll get the Guardianship. Keep visualizing a really good placement for her; it WILL happen!

quote:

Originally posted by Cathy J. M.:
Oh, Bobbie, what a nightmare! I'm so sorry this has happened! It seems like the worst thing that we all fear.

There must be a social worker there, or someone in charge of her case. These hospitals don't WANT patients to be there forever, so I'm sure you'll find some staff members who will work with you to find a better placement for her.

I know it's horrible meanwhile, for you and for her. Please take strength from our caring and take it one step at a time. I'm sure you'll get the Guardianship. Keep visualizing a really good placement for her; it WILL happen!

Thank you so much for your kind words of encouragement.

Bobbie
I'm going to say a prayer that you get guardianship asap and also that your Mom feels safe and as comfortable as possible while she's in the hospital.

Hi Bobbie_T,
I am really beyond words that your mom in all intents and purposes has been removed from your care because she was placed in a state hospital.
I thought the state gave us the power to take care of our loved ones through the POA and the medical POA. Why are they no longer valid. I also live in KY and am able to keep my Grandmother in my home with my husband and myself. The last time she was admitted in the hospital the dr on call told her primary dr that she would not be able to go to a NH. This was due to behaviors in the hospital.
My heart hurts for you and your family. I hope you will be able to regain 'control' of your mom again very soon.
May God Bless You and Keep You

OMG, Bobbie, my prayers will be added to others with the hope that you are able to help your mother during this awful situation you and she find yourself in.
I can't even find the words as this truly does sound like a nightmare and I just want to cry with you! Please keep us posted and I know that others on the site will have good links of helpful information. This placement just boggles my mind.
As this day comes to an end may you have a peaceful night so that you are fresh to continue your battle. May God grant protections to your poor, confused and scared Mother.
Sheryl

feeling for you....

Bobbie, I am stunned and sick at what has happened to your mother. And to you. Not permitted to say a word about what happens to your own mother? It sounded worse than a criminal hearing.

I wonder if you talked with the Alz Assoc after the ruling. It strikes me as a huge deal if we now have to fear that our LOs will be tossed into mental institutions with the general population of the mentally ill. I can't begin to imagine the terrifying ordeal this is for your mother and for you.

Yesterday I was looking into inpatient treatment for my mother but stopped dead in my tracks after reading what happened to your mother.

I too am praying for your mother's protection and for you to have the strength to get through this.

Hello everyone and my most heart felt thanks go out to all of you that responded to my plea for help. I have to say that yesterday was one of the hardest and most emotional days I have ever experienced.

I was scared out of my mind for mom, mad as all get out that a good woman who had always lead a good life and was always kind and good to others had fallen throught the proverbial cracks in the system due to no fault of her own and I was just in total shock and disbelief at the sequence of events.

Although I am still heartbroken over what has happen and where my mom is at, I believe that God has been hearing our prayers. Yesterday, while I was absolutely horrified at the facility itself I have to admit the people in the admission department there were very good to me and had much compassion for me. The staff on the floor that she was assign to may have been abrupt in my leaving but maybe it was for my own good that I was encouraged to go or not stay any longer. It had already been a very long day and as you already know by this time I was an emotional mess.

And, today after some much needed sleep and some fresh air to clear the mind, I'm much calmer and can talk without dissolving into a pool of tears. I have also talked with the doctor who will be taking care of mom. He called me today and talked for about a half hour and was very in depth about his assessment of her, I was very impressed. He explained alot of things to me about her meds and also indicated the he thought she had Lewy Body Dementia which could have been causing a lot of the behaviors we were seeing in the past. He told me what his intial plan with her was going to be and that we would talk again soon and update her plan of care. This is so much more information than I ever received at the last hospital.

So yes I do believe God is hearing our prayers and I thank each and everyone of you for your prayers for my mom and I ask that you continue to keep her on your prayer list as I will keep you all on mine.

My love and thoughts to all.

quote:

Originally posted by Bobbie_T:
Hello everyone and my most heart felt thanks go out to all of you that responded to my plea for help. I have to say that yesterday was one of the hardest and most emotional days I have ever experienced.

I was scared out of my mind for mom, mad as all get out that a good woman who had always lead a good life and was always kind and good to others had fallen throught the proverbial cracks in the system due to no fault of her own and I was just in total shock and disbelief at the sequence of events.

Although I am still heartbroken over what has happen and where my mom is at, I believe that God has been hearing our prayers. Yesterday, while I was absolutely horrified at the facility itself I have to admit the people in the admission department there were very good to me and had much compassion for me. The staff on the floor that she was assign to may have been abrupt in my leaving but maybe it was for my own good that I was encouraged to go or not stay any longer. It had already been a very long day and as you already know by this time I was an emotional mess.

And, today after some much needed sleep and some fresh air to clear the mind, I'm much calmer and can talk without dissolving into a pool of tears. I have also talked with the doctor who will be taking care of mom. He called me today and talked for about a half hour and was very in depth about his assessment of her, I was very impressed. He explained alot of things to me about her meds and also indicated the he thought she had Lewy Body Dementia which could have been causing a lot of the behaviors we were seeing in the past. He told me what his intial plan with her was going to be and that we would talk again soon and update her plan of care. This is so much more information than I ever received at the last hospital.

So yes I do believe God is hearing our prayers and I thank each and everyone of you for your prayers for my mom and I ask that you continue to keep her on your prayer list as I will keep you all on mine.

My love and thoughts to all.

Bobbie,
I'm so glad to hear some positive news. Her doctor sounds great. I'll definitely continue to pray for you both.

I do love answered Prayers. Glad that this seems to be a major break through for your mother. When a doctor calls us and leaves us feeling that he is really listening and reacting to patient in postive manner has to do your heart good.
We are so happy to hear this. My night sitter was so upset about this that she ask me first thing if there was anything new. She will feel better. Please let us know so that we can continue to lift you up in praise or need.
Sheryl

Bobbie, thanks for letting us know. It does sound as if the doctor knows what he's doing and is caring.

Sheryl please tell your night sitter thank you for me.

I just talked with mom's nurse and she is having a good day so far, she said mom was a "little fisty" at first this morning but has been outside for a bit, taken a whirlpool and let them do her hair and has been smiling from ear to ear. This has truely been good news to me and it feels like I can breath a little easier. I'm looking forward to the weekend when I can visit.

Hi, Bobbie.
Thinking about your mom and you and the weekend visit. It had to be very hard, but I hope she's receiving the right care and treatment.

I'm not far behind, sitting here bitten and bloodied and trying to avoid the inevitable, but my mother is much older.

I hope you are able to do something good for yourself and put the worries aside every now and then.

May God Bless You Bobbie.You are a Nurse,have you ever worked in a nursing home?I work in a nursing home.In an Alzheimer's Ward.I hate it when they send someone out to the psych ward.They usually come back 2 weeks later in a wheelchair drooling without the behaviour they were sent out for. Sometimes they get much better and back to walking again and sometimes they don't.I try my best to correct or overlook such behaviours that will send them out. But sometimes you can not for the safty and well being of the other residents.I wish there was a better way.One old resident shared her story with me. She was a nurse in the 50s at a state mental Ward.Until she could no longer take it. She said they would use electrical shock treatments on people with brain disorders for their bad behaviours.I asked "Did it work?" She said"Well...they didn't have anymore bad behaviours cause they didn't have any behaviour They just sat there until they started moving again and they would give them another treatment.It was awful."I said,Now a days we have medications.She replied "Yes,Now a days they use medications to do what electical shock did back then."It takes a mental hospital and a whole lot of staff and sometimes many medications trial and errors but we have came along way in conditioning the patient for life in an Alzheimer's Ward.May they find the right medication for your Mom.You say whirl pool?These guys are trying pretty hard and are on the right track. This is a blessing for you.Wow wish we had one of those in the alz ward.
HUGS! Marcus

Hi Bobbie,

I hope that things are going better with your Mom. It is a scary thing to have a LO placed in a state mental hospital.

I have had a somewhat similar experience with my eldest son, who has bipolar disorder. After he went off his meds and jumped 180 feet into a river from a bridge, I told the social worker that he could not come home because my husband and I couldn't watch him 24/7 to make sure he took his meds. He ended up in the state hospital for 3 months because he was involuntarily hospitalized. It was the best thing that ever happened to him. He finally understood how important it was to stay on his meds and stopped using drugs to self-medicate. He lives on his own and had only one relapse, when his meds interacted with each other through no fault of his own. After trying to get help for him for over 3 years, he was suddenly eligible for a lot of programs because of his stay in the state hospital.

I write this because you asked in an earlier post if anyone had experience with a LO being involuntarily hospitalized. It was scary to visit my son in the hospital because it also was the place of where horror movies could have been made. In order to get to where my son was it was necessary to drive past the facility for the criminally insane. However, this was what my son needed to experience in order to take charge of his health and well-being.

My Dad ended up in the geri-psych ward last November because of aggressive and exit-seeking behaviors. I finally had to transfer him and my Mom to a different facility with a locked dementia ward. The facility they are in is more attuned to behavior issues than their original facility.

It sounds like the doctor and staff have a good handle on what your Mom needs. Sometimes it's necessary to go through a dark period before we see the light. I will keep you and your Mom in my prayers. May God bless both of you and give you the strength to continue to care and advocate for your Mom.

UPDATE: I went to see mom on Saturday and spent a couple hours with her. WOW what a difference a week has made. Mom was smiling, awake, putting 3-4 word sentences together and she was even able to write her first name for me. There are still some behavior issues but the staff says its all about the approach how much of an issue they are and I totally agree.

I have to admit a week ago I was scared to death of this place she is in and worrying myself sick about her, but the staff there truely care and they are people who want to be there to take care of people like my mom. I have gotten more information from the staff, everyone from the doctor, nurses, social worker and aides than I ever got when she was in the hospital. This has so far been a blessing.

I know I still have a long curvy road ahead and it will have it's peaks and valleys but I know where to come when it seems like it's too much to bear. I don't know how I would have made it through the last couple weeks without the wonderful support of everyone who has replied to my post for help. I just hope as time goes on I can offer someone the same comfort and support as I have received.

Marcus: Thanks for your post about your resident who was a nurse. My mom went through some of those EST's in the early 70's and from what I have heard they were horrible.

Footballmom: We have a lot more in common than you will ever realize thank you so much for your post.

Love to all and your in my prayers
Bobbie

Bobbie_T,
I just wanted to let you know my thoughts and prayers are with you! You are doing a great job! I have had some similar issues with my mom as you have and it's important to realize that you are doing the best you can for her! I am the only child and my mom and I were very close. She is only 66 years old and this disease has been very heart breaking. After several tries due to my moms behavior she is in a ALF dementia unit after being in the hospital for a couple weeks. I hope your mom continues to receive good care as it sounds like she is now! Take care of yourself also!! Take Care! Monique