When can caregiving become overzealous and or abuse?
When we are caring for a parent that refuses to bathe, wash their hair, take medications, eat, drink, etc. How far can you go in providing their care or trying to make them do "what they are suppose to" before you just have to call it quits and let it go or it could turn into what might be construed as abuse?
My mother was diagnosed with pneumonia 6 days ago. She has antibiotics and yesterday was given an inhaler when we had to take her back to the hospital for fear that it was getting worse. She is to use it 4 times a day. She is refusing to use it, says I am a liar and she does not have pneumonia, she was never diagnosed with it, never went to the doctor or had an x ray or went to the hospital yesterday (even though I have provided the paperwork).
This morning and this evening were pure hell in getting her to use the inhaler. She will scream at you that she is NOT USING IT! Tonight when I was telling her to blow out all the air in her lungs, she basically spit in my face. I put the inhaler in her mouth and told her to breathe in as I shot a burst into her mouth. She slapped me.
In an instance such as this and many others that we deal with on a daily basis, when do you OR DO YOU.....just give up and walk away and say in your mind, okay if you die, you die, I cannot do this any longer.
I realized tonight that I cannot make her use the inhaler if she is going to fight me on it. This situation could have turned into a situation where anyone on the outside could have looked at what was going on and construed it to be abuse.
I became her caregiver to take care of her and protect her and because no one else would or could do it. I have two siblings that work and one lives with us. She cannot handle the situation, she has zero patience and as it is stays at work 4 hours past quitting time so she does not have to come home and be around to help. The other works 12 hour days and has two children and her husband is deceased.
I do not want to put her into a NH or a living facility but I cannot handle her constantly fighting me over everything. We put her on Remeron and Celexa and they worked so great to handle her. She developed headaches and was slowly removed from the Celexa and now I am living in HELL!!!
Her Gerontologist has said he does not want to put her back on any SSRI's like Celexa because she will probably have the same headaches or other problems. Instead he wants to put her on Anti-Psychotics that have what he calls a black box....as they can lead to stroke and heart attacks. I want him to try another SSRI and save the Anti-Psychotics for later if needed.
What do you all do when the person you are caring for REFUSES TO DO WHAT THEY ARE SUPPOSE TO or at least YOU are unable to get them to listen and acquiesce? I am just beside myself at this moment as it feels like I have failed or I am in the process of failing at this. I never want to be accused of abuse but i cannot get her to do what she is suppose to do either.
What do you do? Where do you draw the line? When do you give up? HELP!!!! I NEED WORDS OF WISDOM!!!
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HC why does your sister live with you and your mom? Sounds like you'd be better off if she wasn't there. Does she contribute to the household expenses?
Veronica - nice plan in some ways but it would only work once, if that. The idea appeals...
jw: Brought up the fact that we need to take care of ourselves if we are to be any good to anyone else. I have a therapist that comes to my home to talk with me every Monday morning and see how the week has gone. She continually tells me that I MUST leave the house on the weekend at least or I will go crazy. I was trying to go out for a while each weekend and then it went down to every other weekend and now live in sister who cares only about herself has had a meltdown that I EVER LEAVE THE HOUSE! Her real problem is that I leave the house with my daughter and my younger sister and her daughter. The 4 of us enjoy each others company so we may go out to eat or a movie or a swap meet. Older sister does not like this and has now informed me that I CAN NO LONGER LEAVE THE HOUSE ON THE WEEKENDS WITHOUT HER PERMISSION BECAUSE SHE MAY HAVE THINGS SHE NEEDS TO DO. Now I am 61, use your imagination as to what words I told her off with! What she has now resorted to doing is watching me to see if I am getting ready to go somewhere. She gets up in the morning and dresses, hair and makeup as well then basically waits to see if I am going to get ready to leave, then she dashes out the door first. Or if I am leaving she wants to know when I will be home because she has numerous places to go. To that I have just told her that she has 5 days a week where she refuses to come and help, therefore in that extra 4 hours each day she better make sure she has completed all of her tasks because come the weekend, she will be the care giver while I do what has to be done for myself! She yells and screams and throws a fit and pushed me out of her bedroom the other day and slammed the door in my face.....she is 66.
She is very rude to my mother as well. I believe she does this so I will not leave her in charge of our mother. You know how some men with fake incompetence so their wives will not ask them for help, well I think she does the same thing where most everything is concerned any more. The other night the sprinklers came on outside and it was suppose to rain the following day, so she comes to my door and says "the sprinklers are on." I was speaking with my daughter so I looked at her and said, "Would you like to go turn them off?" She replied, "No." and walked to the bathroom.....I let them run.
This particular sister does the things she does because she has had a problem with me since my birth, that she failed to ever get over. She further makes my life miserable with Mom because it is my punishment for taking Mom's MDPOA and financial. She will make me suffer no matter what because I put a stop to her taking Moms money to pay her bills.
Countrymouse: She tells me that she is having a brain scan done as a baseline for her doctors to go by. I am sure she believes she has the beginning of dementia or Alzheimer's as it does run in our family. My mother's mother had 3 sisters and I believe 4 brothers although I never knew the brothers. All of these siblings had children that have had Alzheimer's. My mother is the only one in her siblings to have dementia.
I know my sister has a mental problem and has had it her entire life...it is called being a B--ch! She has alienated both of her children who are in their 40's and either do not claim her as their mother or will only speak to her, "when hell freezes over." By the way this lovely woman is an elementary school teacher!
Countrymouse: Do not worry I have braced myself for saying NO to giving her any care. I have enlisted the help of my younger sister and her children as well as my daughter to knock me in the head and drag me off if it even looks like I may fall prey to caring for her. Since she has filed a FALSE report against me to APS I would be a fool to touch her with a 10 foot pole....actually I can't touch her, APS told me that "I cannot ever lay a finger on her!" I hope she does not need me to save her life some day!
I am sorry that I sound so horrible but you can only take abuse for so long until you stand up and have to fight back. When my mother is gone, I honestly hope I never see this sister again. She offers nothing but pain and misery to my life.
jw: just a fast answer about the Tylenol, Mom is currently using the strongest or highest potency of Tylenol that they make and it does nothing to stop the headaches. Advil, Tramadol, nothing she can take with stop the headaches when they hit. She is on blood thinner so there is no asprin she can take and we have not found anything to stop the headache yet. A slight headache would be manageable but hers became all day long every single day to the point she had to lay on the bed with ice or heat and nothing worked. Celexa can upset the sodium in your blood and cause headaches but even off the meds she is continuing to have them. She did not have them prior to beginning the meds.
I so want to respond to all of you who have made such valid points and I greatly appreciate you all!
What sounds horrible - in fact you've just introduced a notion that will have me waking in cold sweats all night long - is the very idea that you MIGHT feel obliged to care for your demented sister (hypothetically, I mean - spit spit, God forbid that she ever gets the disease at all).
Mind you I think if there is one person in the world who would be more aghast at that idea than me… it'd be my sister, at the thought of my looking after her.
So please! Caring for our sisters next? That idea ends RIGHT here.
i would definitely agree to the antipsychotics. in my view having a calm demeanor far out weights any black box warning. it means she is at increased risk not that she will have a stroke. priorites are the way to go and if a nursing home is going to be the only way she gets proper care that's the way to go and do it without guilt you have done your best and that is always good enough
And you sure as heck will not find me caring for sisters if the ever develop this wretched disease! No help from them, only additional stress and also a false report on me to APS. They will have to wing it .
The doctor had already removed Mom from the Celexa and he decided to remove her from the Remeron as well to see if the headaches she had been experiencing ceased. I would be lying to say that did not frighten me as without medication she was not sleeping at night, upset, angry and flipping on our lights during the night, keeping us all awake until we were losing our minds.
Today Mom was fine, we had no problems at all. I realized everything has to be kept quiet, low key, played her favorite music, let her sit in the garden. The problem began between dinner and bedtime with last minute details, locking up, everyone being home, take dog for a walk etc. These she must do over and over anyway but without meds it was a bit worse.
The doctor now feels that if the headaches are not related to the Remeron and Celexa, he may put her back on them rather than the Anti-psychotics. I hope we can stay on lesser drugs for the time being. Today made me wonder how much she actually needs them at all but I know her condition is like a roller coaster and as soon as we think she is fine, she will get worse. I just know that I cannot take care of her if she is obstinate and angry, screaming and yelling. Mentally and physically I just cannot handle this all alone when she is in a bad condition.
My sister who is of no help in caring for Mom and actually stays at work 4 hours after quitting time so she does not have to be around the "situation" left to go to her doctor to have a CT scan done of her brain. I think she believes she is developing dementia or Alzheimer's as well. I refuse to take care of her, she has made my life miserable and continues to do so. She also filed a FALSE report with APS against me, saying I beat her and caused bruises and scratches on her arms. She did this to herself in an attempt to have me jailed and removed as Mom's POA. My 16 year old niece was here and saw everything and was my witness which is all that saved me. I have felt that I was losing my mind caring for my mother with zero compensation for the last 8 years, I will not care for my sister. I know that sounds horrible, but I just cannot.
SNRI's affect both serotonin and norepinephrine (the panic hormone) so they tend to level out behavior. I would try an SNRI for six weeks before jumping to the antipsychotics. Talk it over with the MD, but in the long run, trust his judgment and inform him you cannot take care of her, nor can she return home alone in her current state. She will need a longer course of treatment or referral to a secure facility. You have done all you could, God keep you safe.
If you talk this one into trying buspirone - it's been a good choice for us in an acute rehab practice for anxiety and agitation, relatively few people too sedated on it and very rare to have antipsychotic-like motor effects, OR if you decide to try the Depakote after all - see if you can get a small supply to try first and see how it goes. Wish it was easier. Maybe someday they will have better pharmacogenetic testing that covers more common side effects of more common drugs, right now its more out there for stuff that can kill you rather than stuff that will make you miserable...
I wish I could better address the concerns about the pharmaceuticals, I can only commiserate: I've been frustrated with my dad for about 20 years now regarding his refusals to even try some medicines. If he had started taking med for enlarged prostate decades ago he would not be chronically cathetered now. He loves to say that he "can't tolerate" this or that. Basically, with my dad, if a med has a side effect, he'll get it. And if it doesn't really have a side effect, he'll get it. With your mom's headaches and the SSRI...could she "tolerate" a Tylenol?? I don't know. I don't hold an MD or a degree in Pharmacy. Do you have medical power of attorney? This probably won't allow you to force pills down her throat, but will give you some more agency when speaking with medical professionals on her behalf.
Finally, nursing home:
MY dear HC, it sounds like she needs it. And I would hazard a guess that it might bring you some peace as well. If it is financially possible, I think it could be good for both of you...trained staff can often get our parents to cooperate better than we can (much like when we were better behaved for teachers or babysitters than we were for our parents). You can visit...and those visits will be of nicer quality when the conversation doesn't always become a pitched battle.
First, the doctors work for YOU and your mother. If you have an arrogant physician who talks down to you, get another. I have no problem "firing" any physician who is not proactive and professional. I don't want any doctor who simply "writes my mother off" or doesn't like to answer my questions.
Since I took over as my mother's MPOA, we've been through three primary care physicians (her current one is amazing!); two neurologists (her current one is top in the field for this area), and we've switched home health agencies once. You don't have time for nonsense from the people who need to be supporting you.
If you feel intimidated by any of them, speak up. If they can't handle it, there are plenty of other health care professionals to choose from.
I feel your pain. I'm in the same position. My mother has Lewy Body dementia with Parkinsonism, and a whole host of other health issues, including COPD, CHF, pulmonary hypertension, etc., so I know about the battles with inhalers and nebulizers.
From a practical standpoint, you might begin with her doctor. You mentioned a gerontologist, but you didn't mention a neurologist. Whoever she sees, remind that doctor that they don't live with your mother 24/7 and they aren't on the receiving end of her abusive behavior. There are medications that can help regulate her moods, and there are many, many SSRIs on the market that can be tried. What she should be given depends upon the type of dementia she has. For instance, Lewy Body dementia patients should not be given certain medications, but there are others that will help. You need a knowledgeable neurologist who can help you understand what's happening to your mother's brain.
Having said that, remember that what she is experiencing is brain failure. Yes, just like heart failure, but it's her brain that is broken. It cannot be fixed, and it is progressive. Try to learn as much as you can about your mother's diagnosis, whatever that may be. The more you learn about the clinical aspect of your mother's condition, the easier it will be to understand her erratic behavior. That will take the pressure off of you, emotionally.
It's much easier to step back from the behavior when you begin to understand that your mother is no longer a parent, but a patient. This doesn't mean you don't love her. It doesn't mean you won't continue to do the best you can for her. It just means that things have changed. She has a disease. Brain failure.
Now, about you... I've been where you are, and beyond. Trust me when I tell you that beyond is not a nice place to go. You must take care of yourself. I'm sure you've heard it a million times. Put the oxygen mask on yourself first, and then you can help others around you. It's true. If you do not get respite, and take a little time for yourself each day, and tend to your own health (physical and mental), there will be repercussions. It's just a fact. There are statistics that you don't want to hear regarding the percentage of caregivers of dementia patients who die before the person they're caring for does. So don't go down that road.
You need help. Whether that's from your family, home health professionals, a facility... some other network of assistance, whatever. I've explained it to my family this way: When mother was in the rehab facility after a bout of pneumonia, she had at least two CNAs at her beck and call, a nurse to administer her medications, kitchen staff to prepare and serve her meals, housekeeping staff to clean her room, physical therapists, occupational therapists and speech therapists to work with her daily, and more CNAs to help her get up and toilet 5 or 6 times throughout the night. And there were three shifts of them, at that! That's a lot of people. So one person cannot provide the constant, day-in, day-out, round-the-clock care for someone with brain failure. Let yourself off the hook. Burnout, as I said before, is not a good place to be. It leads to depression, despair and possibly worse. Not to mention the stress on your own brain, your own heart, and your own immune system. Get help now. Please.
You need support. Look online for videos by Teepa Snow, an amazing dementia expert who helps caregivers understand what is happening to the brain of the dementia patient. One video, and I promise you'll come away with a great feeling of relief, knowing that finally, somebody understands what it's like to be "on the inside" of the situation you are in.
I'll be praying for you. Without faith in God, and the advice of others who have walked this road before me, I'm certain I wouldn't be here right now.
There is great hope for you, too. And light at the end of this tunnel. Love your mother. Do the best you can. But understand this: You can't do everything by yourself. You were never meant to.
What really ticks me off is that he was so upsetting to me that I did have a panic attack and woke up this morning in another one. I spent the day "rum dum" from the Xanax and walking up and down the street to calm myself down. My daughter was here today so she kept an eye on Mom for me.
vstefans: Thank you for your input....I do/did not think it was fair for the hospital to jump on me for leaving Mom to go home get medication and sleep either after being up with her for 36 hours STRAIGHT!! After I was jumped by the male nurse, I thought..."wait a minute they go home and sleep, they are more rested than I am and yet this guy has the nerve to jump me and basically threaten me?"
It was not like I just jumped up and left either, I went and talked to her nurse and asked her if Mom would be okay, she is the one who said it was fine and she would sit by the door and keep an eye on Mom for me as well as putting on the restraints and bed alarm.
The bruise Mom had was NOT from a blood draw. It was on her forearm between the wrist and elbow and was about the size of a hand, like she had been grabbed very firmly!
I really don't want the Depakene as I have experienced it already, but I did not really want the anti-psychotic drugs as well, even though we did ask him to please try the Seroquel again.
Mom had no problems at all with the Remeron and Celexa until the headaches began. Last night she took the Remeron again and today she had a headache again. The Celexa did not seem to cause any problems with her. I do not understand why he cannot leave her on the Celexa during the day and try another medication for the evening rather than Remeron. He has just stomped his foot down and said if she can't take these then she will not be able to handle ANY SSRI......I have to ask, why not at least try?
This morning he had his secretary call me and tell me that he had written out an RX for Depakene and she could send it in for me and if we did not want that then he wants us in his office on Monday at 3:30!!! It makes you feel like you are in trouble and being fired!!! I do not need any more panic and anxiety attacks and if necessary I will find another doctor. On Monday should I ask him about trying the Buspar or Buspirone? Would that be used alone or in place of the Remeron at night and continue the Celexa in the day? You evidently work or have worked with these meds because I would have no idea at all about what could or could not be used.
pamzimmrrt: Thank you for telling me about the inhaler and asking for the nebulizer. The hospital did do a breathing treatment on her and my father use to have to use a nebulizer due to emphysema, so I am familiar with them. I will ask.
You all have been so wonderful to give me so much help..Thank You from the bottom of my heart!!!
etc. But we are lucky our FP knows his stuff, and I am in the medical field .you can't cure AL, just manage it at this point in Dad journey
You use Namenda for behavior? I have never heard of that. Interesting.
With the Remeron, was the headache intractable? No way round it?
Second thought on the meds - if SSRIs are not tolerated, and by the way if one isn't another might be, and maybe a Tylenol would relieve the headache, an alternative to consider before a regular antipsychotic would be Buspar or buspirone. Some docs turn their noses up at it and like every other drug YMMV, but we often have good results as far as a calming effect without much sedation, and the bad motor side effects you get with antipsychotics are quite rare. However, I do see that some people tolerate the antipsychotics with less problems and it is not out of the question to try that first; it can be a matter of quality of life, both yours and hers at this stage.
God Bless,
L