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!!!
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.
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?
You have your own health issues and you must look after you. ((((((((((((hugs))))))))
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.
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.
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.
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!
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.
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.
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.