Follow
Share

I am the care giver of my 86 yr old mother. I work full time and her dementia was keeping me up at night. I was so pleased when the local psychologist told me we could her have her evaluated at a geriatric psychiatrirc inpatient unit (5-20 day stay) to get help with her sporadic sleep. Prior to this admission, she would get up in the morning, wash and dress herself, I would feed her breakfast then put her on her Senior Center bus. She would spend a few hours at the center having lunch and being with friends, ride the bus home where a relative would stay with her until I got off work. She was admitted and it is now six weeks later and she is still at the hospital psych unit. Since admission there has been a rapid decline in her physical and mental health. They keep her tied up to a recliner-like chair, she no longer walks, although she walked in the day of admission. Her period of lucid thoughts are very rare, she usually makes no sense when tyring to converse with her. She now keeps her eyes closed 95 % of the time, the doctor has no explanation for this. She keeps both hands in a clenched fist position and can no longer feed herself, She has lost a lot of weight. There has been liltle to no change in her sleep patterns, which was the inital reason for the admission. She has had to be sedatated on occassion for severe agitation. She crys a lot and calls out to deceased relatives often. I feel so guilty for putting her there, my intentions were good yet it has only turned out to be a nightmare. I am an emotional wreck feeling like I made choices that caused harm to the person I love the most, I miss her so much. I cannot believe how rapidly she declined, we are now looking into hopsice and nursing home care. Does any one have any insight?

This discussion has been closed for comment. Start a New Discussion.
Really true. I've had conversations with my 106 year old, about what's next .... she has often said she wants to go "home" but does not know where "home" is. I brought up the idea of an afterlife one time, as neither one of us are full believers, but I did say that what I do know, is that in this world everything is always growing, and we are in good hands, and if there is a heaven, we will be glad. I tried to stick with what she had always believed, and my own beliefs, and had the impression she was aware of the approaching end, and just waiting, sometimes afraid and holding on, but generally realizing, there's no earthly rescue coming. I find elders often try to be kind to those around them, and the panics are more related to confusion; they prefer to leave kindness behind.
(0)
Report

OctoberOhio5 - I see the same thing in my mother-in-law too. She doesn't like living the way she is but I believe she is afraid of dying too (even though she'll say she's ready). Her body is shutting down - but slowly and not as fast as she'd like it to (supposedly). And she has a bunch of medical problems to boot. So I agree with you there - sometimes they force themselves to remain alive through fear, etc.
(1)
Report

I'm just putting this out there, but as I deal with my Mom I'm learning to understand that her mental state is not my fault. As I watch her deteriorate I see she is simply holding on too tightly.

I sincerely feel she is forcing her body to remain alive through fear and pays for it through her mental pain.

Learn that it is not your pain, it is hers to bear. And she will, until it's time for her to go. That is true love.
(3)
Report

Does have a urinary tract infection? My mom had all those symptoms & I never would have known that was the problem. The hospice nurse figured it out, we treated her & she was better within one week. We also adjusted her medication.
(0)
Report

I do not have any direct experience with this situation. However I would recommend consulting an elder law person and transferring your mom to a care facility to monitor her withdrawal and recovery. That may be the most crucial part. You will want to know exactly what treatment and drugs were administered during her stay there.
Prayers to you both.
(0)
Report

Please get her out ASAP. I went through the same thing with my dad. He was dead in three months. They had him on so many psych drugs that his body could not metabolize and his organs began breaking down. It was heartbreaking. He was a zombie. Demand to see your mother's drug list and take an active role as her health care advocate. Do not let them intimidate you and follow your heart. Good luck.
(4)
Report

WOW, this is an interesting and eye opening discussion, that I'm glad I read. Momsyoungest, I think many of us would think that a recommended inpatient psych evaluation to see what may help w/ your Mom's interrupting your night's sleep would be a good idea. Especially when it was advised to you by a geriatric psychologist! But, this story (and Scared Clueless' story) is a lesson to others of what NOT to do. It has been my experience that any move whatsoever, as Castle was saying, even the smallest move WITH family and caregivers going as well, is extremely disorienting and can throw the dementia person into chaos. I experienced this when my Mom had to go to the hospital for an overnight stay w/ a pacemaker change. It was so unbelievably disturbing to her, and she became a person so confused and hard to manage, even though myself and my daughter took turns being there with her at all times. She kept wanting to leave, didn't know where or why she was there, kept pulling out tubes, kept trying to get out of the bed by herself, argued and became rather combative. (She was NEVER that way before) The hospital staff said they may have to put her in restraints. I was horrified. She was a totally different person. I wondered if she'd ever be herself again. When I got her home, she was strange and delusional for a day or two. She hallucinated, etc. But finally, after she was back in her surroundings, and things got back to her recognizable schedule again, she settled down, and gradually returned to the level she was at before the horrible hospital experience. So, Momsyoungest, what I'm saying here is don't give up and think that all is lost, until you give it a try to get her back home, off all the meds they may have pumped her full of, (some take awhile to get out of the system) and back on a schedule with people whe knows and people she knows care about her and love her. You called it a "psychiatric nightmare" and it was probably a nightmare to her. And of course you had only the best intentions and did it out of love. So many of us learn, by trial and error, that OOPS! That was not the way to go. But, how could you have ever known the results would be so disastrous. And thank you for your post, because through your telling us what happened, it has alerted others of what NOT to try. But I really do encourage you to make one last attempt, before giving in to complete loss, of bringing your Mom back to sanity and normalcy again. If you try, and it doesn't work, at least you'll know you tried, and it may help you not feel so bad and so guilty about the attempt you made to help her that went amuck. Whatever you decide, just know in your heart that you were only doing what you hoped to be a good thing with good results. My heart goes out to you that it went so badly. Please don't blame yourself. What a difficult journey we all must travel with this dementia nightmare. We make mistakes....but we are only human, and are doing the best we can. Hugs to you and your dear Mom.
(4)
Report

Oh, one other thing that's important - you may or may not want to suggest to your mom that she moves to a place near you - people who are struggling and have issues, are afraid of change, and so it works better to say, we want you near us, than it does to ask her, for most elders if asked if they want change, will say no, no matter what it is! Fact is, for them even walking from one room to another is a change, so any unfamiliar place is scary - you can offer her a chance to try it for a month - by then she would be more familiar, and it would work!
(1)
Report

Hi Scaredclueless :)

Is there any nursing home closer to where you live? I have found it much easier to get what I want, and to get something that works better for my brother, when I thought about what would not just work, but would be nice, and looked around, and had a place in mind with reasons for it. Now that I'm older, I find it too tiring to do all the travel - before I set him up so he could develop his life where he is, but now, it's hard for me to see him with a 5 hour trip. If it was a parent, I think I might look into something closer to me, for many of them are similar - and sometimes episodes happen with some staff - some staff don't back down, and sometimes they should. But if it takes all those meds to keep your mom calm, then can you at least bring her near you, so you can visit, and plan to sort out many of these issues over the next 2 years or so? That could let you sort things out, while still visiting your mom, maybe 2 days a week? An hour and a half at a time? Too often we try to be ALL to them, instead of making it easy for ourselves to stay in touch. I wish you luck, but I really do think that if you and your husband found an alternative, they might be glad to let you take her. And if you talk with any new home, you can say, she is usually calm, it just helps if people make a list of her needs, or maybe what upsets her, and pay attention - then she's a model patient. You can sell it!
(0)
Report

Castle,
Mom was screaming when she was at the other nursing home out of state that I moved her from. She was getting the antipsychotic, other anxiety and anti depressants when there. When the screaming started back up, they suggested the pysch hospital because they didn't know where to go next as far as the meds go. I have a feeling that making her take a shower and going to bed with wet hair may have caused it to get out of hand. I can remember her always telling me as a child, not to go to bed with wet hair. :) She didn't like the showers to begin with and wanted sponged baths instead. She really flipped when they made her take one and go to bed in the evening with wet hair. They said they had a towel on her pillow. I usually could calm her down and get her to tell me what it was she needed, like water, etc. The screaming became non stop and that's why they suggested the pysch hospital. Wrong move I made. As I said before, it may her worse and not eating on top of that. Before she drank plently of water and always ate very good.
(0)
Report

Xanax and Prozac are also pretty strong - even though routinely used. She was probably getting some kind of psych meds in the nursing home too, no? It has to be said, withdrawal from those is a major challenge, and needs to be done with supervision, of an MD who believes they can be removed. Did you otherwise feel confident in the nursing home? One thing about patients who have caused problems for others, some feel they are relieving others of problems by being locked up away from others. I wonder if you might benefit from taking a step back, and maybe visiting her with no agenda, for an hour or so a day. Just sit with her - when I visited my sister in the mental hospital, ,I knew she like doing informal art work, and I like messing around with it, so I brought in drawing paper, and non-sharp craypas (chalky type crayons), and I just enjoyed doodling, and eventually my sister helped me and I told her that I knew she was not a mean person, and I was not afraid of her, she had a lot to give. I left the art stuff with her, and she began to improve. I wonder if the nursing home screaming was medication related - how carefully did anyone try to listen to her, to learn the reason? Was it a new symptom? If so, can a look at any records or talking with direct care staff (do you know any there that you like, who seemed alert, or good with your mom?) If you might find an answer to the screaming it might give an idea what could be done - maybe explore other options than staying in the psych ward. Sigh. It's what's usually offered.
(0)
Report

momsyoungest,
I know how you feel as I am in the same boat! I have POA over my mother. I was advised by the nursing home that my mom's screaming was out of control and that she needed to be admitted to a pysch hospital for evaluation and see if they can find treatment to stop the yelling. She has gone down hill since! She has only been there almost 2 weeks and has already falling out of her wheelchair, another time had a busted upper right lip and today she has a busted lower left lip. The nurse today was already on the defense when I asked about it. And my husband stepped in. She didn't like that and said that we both had to leave! As we were arguing with her and should not be doing that in front of my mom. We were not arguing with her. I let the RN and another nurse know that I had the right to ask what happened and if it had been their mother they would've done the same. I told them I had no problem of moving her to another hospital. I still might just do that. When she had the fall out of the wheelchair, it could've killed her. She landed on her forehead and knees. It just seems she is kept drugged up and that is not what I wanted. My mom always ate real good in the past. But since she's been there her appetite is declining. They did take her off the antipsychotic medicine as I requested. I hope they were telling me the truth. They still have her on Xanax and Prozac and I'm beginning to wonder if she should be off of these as well.
(1)
Report

I had my mother in geriatric psych and it did wonders. Well, not exactly wonders but they got her off narcotic pain meds, she wasn't as depressed after she got, and sleeps better. This doesn't sound right, but I did see people that seemed to go downhill while they were in there, too. I am sorry, but please don't blame yourself for this decline. Promise?
(1)
Report

Oh my!! I am so sorry!! I am so sad for you.You were doing the thing you thought would help.It does happen fast sometimes.My dad passed away 2 weeks after he went into the hospital.He had severe dementia,hallucinations but with periods of lucidity.I now have my mother who is so much different with her dementia.I am sending you a big hug.Please be kind to you!
(2)
Report

(((((((Hugs)))))) This is so heart breaking. Great advice from everyone, Have you an update?
(0)
Report

Sad situation! And I know the dilemma - I placed my brother into nursing home at 56 years old because of his balance issues getting worse, but I knew that he would lose skills from being in an institutional setting. He did, but he gained companionship in some ways, because living alone was not good for him, without extra help. It is horrible that psychologists are seen as leaders in areas where social help and help with community engagements, would be SO much more helpful than medical interventions - one can avoid meds and retaining skills used often in the day to day environment, if we could get support to help us keep our loved ones IN that environment, making small improvements there! Even if you are not POA - as daughter you can just tell the hospital you want to take your mother home. Once they had my brother in a psych unit for evaluation, and I told them if they didn't let me take him out, I'd hire a lawyer, and they suddenly realized I would take responsibility for him, and they said, "Oh, we won't go against YOU, if that's what you want." And they released him toi my care. It took me a couple of weeks to help him walk every day, which gradually improved, and then I had a different day program lined up for him, and I got him started in it - and he regained his ability to live in the community. He was then about 45, so he was younger than your mom, but your mom had so many more social skills already, that my brother didn't, I think you would find it works. Just make sure you have a plan - it might mean taking a few days off work as she gets adjusted to being out of there - getting off psych meds often causes withdrawal symptoms, so it would be good to find an MD to help with that part. Try to set up a schedule for her days, such that she is helped ot get up (she will have regressed in the hospital!) and out every couple of days and gradually build that up again. Keep trying to find help that believe in you and your mother - make a list of the skills she had, and just keep telling people, this is what she could do before, and you believe she can do that again, but MOST people lose skills in institutional settings. They are designed for people seen to need rest from the world.
(2)
Report

I am so sorry that you are going thru this situation. Six weeks for sleep adjustment is a really long time. I also worked in a psychiatric hospital for the elderly. Medication adjustment would take about 7 to 10 days at the most. You did what you felt was best, I would have also wanted to believe the MD. You don't really have a way of knowing if her decline was going to happen at home so try not to beat yourself up. I would insist on a meeting with all of the team members at the hospital. You can arrange it thru the social worker. Get everyone together at the same time and try and get some answers. My heart goes out to you.
(2)
Report

If you have POA get her discharged. They can only hold her for 72 hours, then they need a court order. By law, restraints can only be used if they are in danger of themselves or others and only for short durations. She has been over medicated enough to put her into a somewhat catatonic state. If you have POA you have the right to refuse her being medicated. The mental health department in your state can help you and explain a patients rights. You need to get her out of that hell hole and evaluated by an a more responsible psychiastrist recommended by her primary care physician.
(1)
Report

There is another thing I considered. She may be in delirium from being in an institutional setting. I hope it clears quickly when she can get somewhere and become oriented again.
(0)
Report

There are good geropsych units and bad geropsych units. If this one is acting like, hey, its no big deal someone who was walking and talking when she came in a few weeks ago is now bed and chair bound and non-functional at all, ready for hospice, it is a BAD one.

Antipsychotic meds can cause drug-induced parkinsonism and other movement disorders. I don't necessarily think every drug on the Beers list is absolutely contraindicated for every elederly person in every situation, but side effects have to be considered. I'm hoping you have medical POA so you can get her out and get meds revised. If not, you could make reports to the local ombudsman and/or suggest subtly that you would consider taking legal action and that might encourage them to want her out.
(4)
Report

I totally agree with DonnaRae - get her out of there asap! I'm no doctor, but I believe she should never have been to a psych unit. Assisted Living or nursing home - but not a psych unit. She didn't have mental issues - just sleeping problems. I also agree that she is probably being given too much or the wrong medication. I would INSIST they take her off the meds immediately and unstrap her. She is not a prisoner and probably became agitated because of where she was - but that is no reason to restrain her or overmedicate her unless she was a danger to herself or others. And it's understandable that you were trying to do what is right for her by following the psychologist's orders, but there's something wrong with this picture. So talk to her primary care physician immediately and see if he agrees with this treatment plan or has any better ideas. Let us know what happens as we care. ((Hugs to you))
(4)
Report

It is against the law to restrain a patient unless they show harm to themselves or others. The patient has to be in the least restrictive setting. Talk to her doctor, get the name of every med she is on and ask why she is on that med. Psych hospitals are very dangerous places.I would call her today! Don't wait. If I sound alarmed it is because I am. Why that doctor would put her in a psych hospital for a sleep disorder is beyond me! She should have gone to a sleep center. Sleep disorders are very common among the elderly. For legal advice, call your local chapter Dept of Aging, they should have an atty that will give you free advice. Why are you looking into hospice? Has she gotten a diagnosis that states she has 6 months or less to live? What is her diagnosis?
(4)
Report

donnarae, that was my first thought, too. Did they give her something when she became agitated on the first day, could she have had a stroke, or did something in her mind snap. I was concerned that they have her strapped down. Isn't that illegal? I don't know. I've read it is illegal to strap a patient in bed without some legal order (criminal or something along that line). I don't know what is going on here, and I don't know what would be the best way to handle it. I would start out by talking to my mother's doctor (primary care physician on the outside).
(2)
Report

First of all I would find out what meds they have her on and why! I would question everything they do. My next thought is to get her out of there. Speak to her family doctor about getting her placed elsewhere. She does not belong in a psych unit! I worked in a psych unit and saw all kinds of things when patients went on meds. The elderly cannot metabolize meds as well as a younger person, they have different side effects. Many meds will cause confusion in the elderly. Unless she has been diagnosed with schizophrenia, bi-polar, major depression or some other psychiatrist diagnosis, she does not belong there! Contact your local Department of Aging and they will point you in the right direction. Once she is taken off the psych meds they have her on, you will see a big difference in her! Please do this ASAP before the situation becomes worse!
(9)
Report

My heart goes out to you! What a nightmare! The situations is sad beyond words. Please do not add to your distress with thoughts of "if only." You did what seemed like the best choice at the time. You could not possibly have foreseen the outcome. I have known/heard of many people who have had their meds adjusted in an inpatient unit and whose symptoms where then much more manageable. I would have gone with the doctor's suggestion, too.

People with dementia do decline. Sometimes the declines are abrupt and steep. Perhaps Mom would have had a drastic decline even if she had stayed home. I don't suppose you'll ever know. Know this, though: this is Not Your Fault.

Hugs to you and to your dear mother.
(9)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter