Last updated:
05-May-2009
Dementia Alert: The Scary Complication Nobody Tells You About
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Yes, I was not prepared for the many months of delirium my mother had during a hospital and rehab stay for a broken hip. I was getting used to her dementia and forgetfulness (answering the same question every 30 seconds... sound familiar?) but her violence, delusions, hallucinations, screaming, accusations, paranoia, etc. really threw me. She claimed to have talked to deceased relatives, claimed people had visited her (they hadn't), asked how her mother was doing (who had died 12 years ago at age 98!), thought she was in a hotel one day, the next day she thought she was at her beauty salon because a nurse resembled her hair stylist, screamed at me for not letting her leave, cried, threw tantrums, or wouldn't speak to me at all, crawled under the bed looking for her purse, tried to stab medical personnel with eating utensils, and on and on. It was a nerve shattering experience and I felt so helpless because I couldn't do anything to make it better or settle her down. Even the nursing staff said it was the worst they'd ever dealt with and seemed ill-equipped to deal with her mental issues. Now that she's somewhat recovered (10 months later) she fortunately has no memory of any of that, but it is ingrained in my head and I worry about the next hospital stay she'll have! It is so incredibly difficult and they do have the advantage of forgetting all the bad stuff. But the caregiver has to whether the storm and deal with the memory of it. I think there's going to be an epidemic of caregiver fallout health-wise both mentally and physically. Add to that stress the current economical mess. Very trying times.
After my husband had six major surgeries, a few trips to the emergency room, C-Diff infection, in-patient therapy and finally, cardiac arrest in 2008 followed by another month-long in-patient therapy, I feel qualified to add a few things. My husband was in two hospitals. The doctors didn't seem to be talking to each other. Nursing staff at one hospital were constantly in his room because of vomiting and diarrhea. I requested he be moved to Intermediate Care. My husband would not look at me, talk to me, spit on me, etc. He became combative and had to be restrained. I kept telling them to look at his sodium level. What do I know? One nurse told me that he had seniority--I corrected him by saying that we had been married 45 years, and I had 45 years seniority! My husband was having gall bladder attacks that were not recognized, until I insisted he be examined. On and On. We made it home, only to have infection settle in his right knee replacement (June). Back to the hospital on emergency basis. Different doctors, different hospital. Better care. Still C-Diff. Knee surgery (6th for year). Released December 1. Follow-up for infection control. Cardiac arrest at home December 5. ICU. Lowered body temperature. Induced coma. I agree that if you are not with your patient almost 24 hours a day, things can get out of hand. You have to insist that you know what you're talking about. Even argue with a doctor if necessary. He/she may be part of a group and is "doing rounds" for your main doctor. Specialties disagree on meds. Your mother is blessed to have you to look after her. BUT--if she is hospitalized again, make sure they check her sodium level! Best to all of you. Oh, by the way, my husband came home with little brain damage and is doing fine now. Thanks to an excellent EMS team who were only 4 minutes away.
Donna I just went through this with my mom when she had hip surgery. She, too, went completely "out of her head"; I was totally unprepared for it; nobody had every said anything to me about something like this possibly happening. The only possible inkling would be that her nurse practitioner had told me she seemed forgetful at her first office visit which is why she asked her to have me call them and let them know when I could come before they would schedule her surgery. (she lives out-of-state) but forgetful is one thing, physical is another which is what she was in the hospital. She has always been somewhat verbal toward me (and I'm an only child) but much less so toward my adult son so I actually called him in with the idea she would be calmer with him. That did possibly help somewhat but he was there in the daytime while I was there at night when she was more confused. I did manage to leave while he was there during the day and talked to a neighbor who was a nurse who told me about "sundowner's" being somewhat common after hip surgery - again no one had ever mentioned this. My father-in-law had this with his COPD but I never related that to this. It means what is says; she was more confused as the sun went down; she would think she was at a dear friend's house. I never thought to try to have anything in her room, but I did call this friend and told her; she then played along with her. Mom was upset about being at this friend's house and imposing on her, taking her bed; she kept trying to get up out of the hospital bed to leave to go home; this friend first tried to help her understand where she was but that only upset her more but when she took the tact that it was okay for her to be at her house even telling her what room she was in, that it wasn't her own; that seemed to calm her, at least for the moment but it didn't last. At bedtime the nurse put an alarm on her that at first I thought was hooked up to the nurses system such that it would alert them so I could get some rest. I found out otherwise when it went off and woke me up finding her out of the bed trying to go the bathroom (the actual room in her room).She at this point did not have a bedside chair because she wasn't supposed to be using one yet; she wasn't supposed to even be getting out of her bed without a nurse. I still at this point thought a nurse had been alerted and would be coming to help. She was trying to hurt me for not letting her go by herself,which is what a passing nurse heard (she probably would have seen the whole situation had the door been left open but a previous nurse had closed it for quiet at bedtime)and reported me for being abusive for. She wasn't supposed to be restrained. She probably should have been given some more medication but she didn't have any ordered. My understanding is the doctor's office was more concerned about medicine reactions and long-term effects than her actions. (I suppose in her case this was a valid concern since she had trouble even coming out of the anesthetic from surgery in times past without giving her any more medicine to depress her system) Maybe I shouldn't get this specific but she was trying to pull out her catheter which wasn't supposed to come until the next day; finally a nurse realized it would be better to go ahead and take it out rather than let her hurt herself; she was trying to go herself which is why it was agitating her so and was able to do so when she took it out. The nurses, however, just shrugged it off , not as dementia or anything like that because she didn't have that documented on her chart but just her medicine. However, at the time I was very frightened, stressed and confused. She was being given her own medicine so that didn't make sense to me but one of those meds was an anti-depressant she was on that I suppose in one sense should have helped; except that I suppose in this situation she was actually the opposite of depressed plus she didn't normally take it the way it was prescribed so in actuality she was being given more of it than she normally took so I felt in some ways that may have actually contributed to the problem. She also had a "nerve pill" med in her room that she wasn't being given. She was, instead, being given that out of hospital supply that wasn't the exact same thing as hers. It may have been supposed to have been but hers was generic and the hospital is required to give brand name; she was taking Lorazepam and they were giving her Atavan. It may have been supposed to help calm her down but she seemed to have a reaction to it that made her worse. She at least was agitated over it not looking like her own meds. I have since learned that at least in these situations you can ask the doctor to permit the patient to take all their own meds which are not directly related to their reason for hospitalization. I now believe the doctor was correct; I learned from the home health care nurse after mom came home that the medicine they were talking about at the hospital was what they used for her spinal they gave her for her hip surgery, which she said normally is morphine; then I understood. I do agree now, however, with the doctor. Even though the nurse said the morphine typically takes longer to pass through an older person's system (just because their system is slower just like all the rest) it still was only a matter of weeks not months before she was back to "normal" and herself. She said that is why hydration is so important as well as elimination. She also said that is a real problem with the nurses at the hospital.
A light came on when I read the info on delirium versus dementia. My mom had been experiencing a slight bit on confusion, and I had concerns she had a UTI. She was successfully living alone and acutely became more confused. She ended up in the hospital for 4 days (with a UTI and most like a touch of sepsis), and then to a nursing home for skilled therapy. She is still there, and her dementia is much worse. I am now convinced it is delirium, as she fits many of the symptoms. Is there any medication that may help with this issue? I plan to take this info with me next week to her care plan & medicare meetings to try to get her skilled benefits extended.
Dealing with delerium has become something the patient care person MUST be concerned about. In working with my wife (Stage IV colon cancer) only the strongest meds relieve her pain, so when Xanax was added to the mix of Methadone and Dialaudid during Chemo days, I knew to expect something. As it turns out, because I was there, she was comfortable admitting she was having halucinations and I helped her relax through them. As good as the nursing is, I know no nurse has the time to hold a patients hand and reassure them for four to five hours. Needless to say, we are not using the Xanax now except in extreme situations, and then only if someone is with her. Kudos to all you loving caregivers out there. You really make a difference!
I have discovered various causes for mother's periods of delerium over the past few years. Perhaps this list will be helpful to others: extreme pain meds such as oxycontin and morphine, the Exelon memory patch (!), urinary tract infections (the first major symptom for her is the beginning of delerium - agitation, negativity), dehydration and other variations of electrolyte imbalance (especially low potassium), even severe constipation. We were suspicious of several other meds (the statins and xanax, for example) because of the medical literature indicating problems and took her off those prophylactically. It is difficult to get MD's to take the delerium seriously as a medical conition, but since the delerium goes away when the medical problem is solved or the drug is stopped, I now always look for something physical that causes these periods of delerium. Mother consistentlt returns to her normal level of dementia and personality as soon as the physical problem is resolved.
Yes, we found out about this delirium thing the hard way. My mother went completely out of her head in the hospital and rehab. facility after breaking her hip. Her dementia had accelerated to the point she was physically violent, verbally abusive, confused and demanding to talk to relatives who had passed on years ago. The Drs. and nurses just shrugged it off as her alzheimer's and gave her Valium on top of her Xanax to keep her from hurting herself as well as the staff. It was a frightening, stressful, and confusing time for all of us. 8 months later she seems back to her "normal" stage of dementia and has calmed down somewhat. This is a serious problem that will only get worse as baby boomers age. More research, information and education is needed for medical personnel and caregivers to deal with this mentally, physically and financially draining situation of dementia and delirium.
i know sunnysouth nurses act like your bothering them when you ask questions or become concerned about your loved ones overall care or medical conditons this is in regards to nursing home care.
I think that you have to be really careful if the older person has hearing or vision loss because being in a new setting with these problems could throw anyone for a loop. My problem has been nurses that act irritated when a family member has to 'interpret' for them to the patient. I feel like telling them that they should count their lucky stars that there is a family member involved to make their job a little easier!