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!!!
Many caregivers hesitate to start anti-psychotic meds. My mom has been taking seroquel for two years. It is prescribed off label for many people with dementia. If the drug helps them be more comfortable. It also helps the caregiver because behavior become more manageable. Mom started with only 12.5 mg a day, late afternoon, for sundowning. Now she is up to 75mg a day. The doctor told us that dementia patients are taking up to 400 mg a day. Evening's are much easier sin starting it. Doctor thinks it might help, I agree, if it doesn't work try another one.
I don't think for a minute that you have failed. You are dealing with a very difficult situation, (((((((((((((hugs))))))))))) Let us know what happens.
There is no prize for getting through this extremely challenging journey without using drugs or without using certain kinds of drugs. There is no penalty for not getting the loved one to do everything she is "supposed" to do.
Make your decisions in love, with your mother's best interest at heart, and you have done as much as you can. No one can do caregiving perfectly -- we can't even define what that would be!
On the specific issue of the inhaler. I wonder if there is anything else she might not object to that might have at least partial benefits. What if you asked her to help you blow up some balloons? Ask the doctor or nurse to suggest some other breathing exercises that might seem more pleasant to her.
Good luck to you, HC. This is an extremely stressful situation, and you are doing your best.
She was hospitalized in Sept 2013 for gall bladder surgery and they tried many meds on her for sundowning and she was hallucinating all over the place, climbing out of her bed over the rails, chewing off the restraints, it was horrendous! I was up for 36 hours straight with her and zero sleep. I finally told a nurse I had seizures and had to go home to sleep and take my medications. She said fine I will put on restraints and sit by her door to keep an eye on her. The next morning I had my butt chewed out by a male nurse who told me THAT I COULD NEVER LEAVE HER ALONE AGAIN, IF I HAD TO GO HOME THEN I WOULD HAVE TO HIRE SOMEONE TO COME AND SIT WITH HER!
She had a bruise on her arm and no one would tell me what happened. I even wrote a letter to the hospital and they sent it to risk management and told me they would look into the matter and get back to me. Ha Ha the letter was a laugh, no explanation, they would handle whatever happened in house and I would be told nothing!
I just do not know where to go from here. I cannot handle her when she is like this and I am a pretty stand up person who can take a whole lot!
If her doctor thinks some other drug is worth trying, I think I would go with that, but I can see why you are not optimistic.
Otherwise I think you have a couple of options. One is to place her in a care center. Visit her often. Love her. Advocate for her. Just don't carry the entire responsibility for her care alone.
The other option is to keep her with you. Continue to do the best you can. Accept that you won't always be able to do what you are theoretically "supposed" to do for her. She is not a theoretical patient ... she is your mother and she has significant impairments in her brain.
Either option, take comfort in doing your best.
I know you say I am not failing but it sure feels like it! I was warned that this would happen by one of her doctors, but I thought he was wrong. He didn't want me to bring her back home from the hospital, but put her into a home....I didn't listen. I am just so sad.
I don't know how it is elsewhere in the world, but in the US I think we have great confidence in our ability to fix whatever problems come up. And we think we should. So when we encounter a problem that truly cannot be fixed with the knowledge, technology, and resources available to us today, we do tend to think we've failed. That there must be SOMETHING we could/should be doing to make the problem go away. There isn't. And it is not our fault.
You have your own health issues and you must look after you. ((((((((((((hugs))))))))
Goodness this is a difficult one. Faced with the inhaler situation, I think I'd call my local district nurse and ask for advice. Partly for the advice itself; partly to cover my own backside, I admit, because then at least the problem would be on record as being reported; maybe slightly in the hope that 'someone' would come and do it for me..?
Would I ever resort to brute force, though… Hm. If I could do it without hurting or injuring her..? And if it was really necessary? (I'm not sure about the inhaler. If she refused the antibiotics it'd be different; but the inhaler was to relieve symptoms, not to treat the infection. If she'd rather feel like crap..?) And an acute situation, not something that would go on indefinitely? Quite possibly I would, yes, if I could do it quickly and deftly; but probably not without discussing it with a health or medical professional. It is, technically, assault after all.
For less critical things: well, I've stopped asking my mother if she wants a bath - I just run it and tell her it's ready. If I ask, there's always some reason she doesn't want to "just now" - so it's either ask or get her bathed, can't have both. If she starts refusing to get in… um. I'll cross that bridge when I come to it.
These are fine lines we have to tread. What's normal for most people may not be normal for your parent. What's normal for your parent may not be how he or she wants things today. You have to stop and think what you're trying to do, how much it matters, and then act on your best judgement at that particular moment. What more can anyone ask of us?
Today we had to go back to the primary care doctor for a follow up as she is out of medication and I still hear "crackles" when she breathes. Instead of giving more medication they gave her a shot of Rocephin antibiotic 1 gram. I never heard of it but it was thick and hurt Mom said. As far as the inhaler went, the female doctor said to her, "Could you at least try to use it once or twice a day?" Mom replied "Sure no problem" when we walked out Mom said "I am NOT using that inhaler and I do not care what they say!" I knew when she promised the doctor that she would use it, that she was lying to her. At dinner time when she was trying to eat she was smothering...short of breath. I said to her, well if you had used the inhaler it would have helped with that. Again she confirmed that she was NOT USING THE INHALER EVEN IF SHE DIED! I shrugged my shoulders and just went on eating. I really cannot force her to use this thing, if anyone saw me try to force it on her they could have me up for abuse and I have become so very, very tired of trying to make her do things and her fighting me every inch of the way.
Her Gerontologist called and was very short and rude to me tonight. About 4 years ago we tried Mom on Namenda. I left on vacation and my sister had her taken off of it because she said it made Mom worse or more agitated. In September mom was hospitalized for gall bladder surgery and had sundowning so they began to try medications of her xanax, ativan, Haladol, Seroquel and nothing worked. When we got home I found this Gerontologist and we took Mom due to her behavioral problems. He wanted to use Seroquel or Namenda until he found out they had not worked. He next chose Remeron and Celexa.... it was a miracle and worked until the headaches set in. He removed her from the Celexa and by accident she dropped her Remeron on the floor last night and did not take it.....today NO HEADACHE. I sent him an email telling him.
Tonight he is rude telling me that he is running out of medications to try on her. I said you have tried 2? There are not any more? He said because she cannot take Seroquel or Namenda that rules out certain classes of medication. Now he wants to give her Depakote sprinkles and said the down side is she will be tired. I took Depakote and Depacane for seizures and I hated them. They do not allow you to go down into a deep restful sleep. Every single night I had the same dream...I was in a camp, like a military camp with tents and every night I was going from place to place looking for someone or something, but it was horrible and every single night!! THIS IS THE ONLY CHOICE HE IS GIVING US.
He made me feel like he was ticked off that the medication had not worked on Mom longer and we were going to be a hard case and he just did not want to mess with us. I have to call him back tomorrow with my answer. All I can think of, is I wish I knew another doctor! My stress level is climbing.
gladimhere: yes I so wish I had help from my sister. She is ticked off that I have POA so she does nothing in protest. Plus because I took POA it cut her off from spending Moms money for her personal gain. Honestly there have always been problems between us, she has never gotten over the fact that I was born...true!
I have a history of severe panic and anxiety attacks and it has taken me about 20 years to get over them but right now with everything I am faced with, I feel like I am going to have one at any second. I just cannot deal with Mom and me have panic attacks, I can't!!!!!!!! I am trying to hold it together and I just don't know what to do anymore.
God Bless,
L
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.
With the Remeron, was the headache intractable? No way round it?
You use Namenda for behavior? I have never heard of that. Interesting.
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
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!!!
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.
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 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.