Mom was hospitalized in Sept 2013 for gall bladder surgery but kept there for 8 days due to erratic heart beat that had to be brought under control.
We knew that Mom was losing her memory 8 years ago and it has progressively become worse. Just prior to this hospitalization her behaviors had become erratic and she was not sleeping at night, flipping on our bedroom lights, trying to feed the sleeping dog and she had just become too difficult to handle.
In the hospital she was experiencing "sundowning" and the agitation was getting to her, so we had to ask for some type of medication to calm her down, which led to a frightening 6 days of hallucinations and just craziness and no sleep. Medications that worked for others, did not work for her. They tried Xanax, Seroquel, Haldol and many others that only made her worse.
I was told by her heart doctor that i needed to put her in a nursing home as he had his mother, where she could be cared for. He told me I could not handle her alone, that she would get worse, I would fail, be sick and hate myself.
I brought her home, took her to a Gerontologist who prescribed Remeron and Celexa which worked fine for 2 months then she developed headaches. He took her off and now wants to go to Depakote sprinkles or some other anti-psychotic drug.
While Mom has been off meds she still has her angry outbursts from time to time and asking the same question 50 times a day, and being up before 5 am, but she has A LOT of good moments as well. Now I feel guilty putting her back on any medication as I know it will dope her up, they all do. I feel so guilty that I am robbing her of her "normal/good" moments to dope her up and keep the bad moments under control so I can cope with taking care of her.
I know Mom will only get worse as time goes on and medication will be absolutely necessary but I am just feeling so guilty that for me to be able to cope with caring for her, SHE HAS TO GO ON MEDICATION. Now that I am feeling so guilt ridden, I am sitting here thinking, maybe I AM THE ONE WHO NEEDS THE MEDICATION! JUST TO COPE WITH THE CARE GIVING.
I have no help and I have two sisters who both work. I am on disability for panic attacks and gran mal seizures. One sister lives with us but stays gone about 4 hours past quitting time so she does not have to be around the situation. I also have a 22 year old daughter who is finishing college that I have to rely on a lot but she needs to get an internship so I will lose her help as well.
I feel like such a failure at this point but my panic and anxiety has kicked up as I am utterly stretched to the last degree with trying to do everything on my own. Requests for help are falling on deaf ears.
Has anyone else felt guilt over having to medicate their loved one and felt like you were stealing their last moments of clear thought? Did you ever wish you had not done it? How do I justify this so I can live with it?
We are only human and not trained in dealing with these problems. We have limitations. Examine your alternatives? Do you want to keep her at your home? Then one, or the other, or both of you need drugs. Otherwise she has to go to a facility, and will likely be given the meds there. It is a simple as that. I know that making some of these decisions may not be easy, but be assured you are NOT a failure any more than the many people who come on this site, struggling to do their best against very difficult odds are failures. I had a few moment of questioning myself when I agreed for the facility to conceal mothers meds, I think all responsible caring people do over some of these issues, but then make a decision and move on. You cannot stop the progression of your mother's illness. All you can do is cooperate in her treatment and provide as good an environment as possible. Good luck to you ((((((((hugs))))))))))
Work with her doctor to find the best solution for both of you. Have you explored all the community resources for you to get breaks? The situation with your sister living at home and refusing to help is pretty draining. If possible it would be better to not rely on her at all - just leave her out of the equation.
I'm then supposed to tell you not to feel guilty but I know that telling you that doesn't make the guilt go away.
The bottom line is that the best you can do for yourself, besides remind yourself that you're doing your best, might be to come in here and vent. Just get it off your chest as often as you need to and I hope that helps you get a little peace.
I've heard success stories about Depakote, but if it doesn't work for Mom, there are other things to try.
The first drug was to lessen nighttime agitation. Without it I simply could not have kept him at home with me. Was being on a drug worse than being in a nursing home? Not in my mind, and not in his either. And he was SO much better off with a good night's sleep. That was one drug hospice took him off and then put him right back on. Without it his agitation returned, and being agitated is NOT comfortable. The drug helped him for more than nine years, right up to the day he died. Why would I feel guilty?
Many drugs have side effects. Monitor closely. Keep in touch with the doctor (ours encouraged frequent email reporting of results.) Make adjustments or changes as needed. If the first drug makes Mom "too drugged" insist on changing doses or trying a new drug.
Realize that even if you place Mom in a care center, she is very likely to be prescribed drugs for her agitation.
Mom has good moments now. Your goal is for her to continue to have good moments while she is taking a drug to lessen her agitation. It is not to rob her of all good moments to keep her quiet.
Personally, I would have felt guilty if I did not try everything possible to enhance my husband's quality of life and to make it possible for him to remain at home with me.
last week I had my mom at the doc and we discussed her Seroquel because of the black box warning for those with dementia. Doc told me about a new drug that is relatively safe called Neudexta. You might want to check into that with your mom's doc.
We are not changing my mom Seroquel, because it works wonderfully for her sundowning most of the time. If it is not broke don't fix it. And no do not feel guilty giving mom these different meds! They make her more comfortable if they work. It makes your job much easier with the meds, so in a sense you are taking them as well. It makes your tasks much more manageable.
The morning of the chemo Dad drove us to the doctor's office to do the chemo.2 hours later I had to carry him to the car.He never got better after that.He died months later from long cancer.He was a great friend to me & a father - law.He was a true down south bluegrass fan from Alabama twang and all.I truely mess him.