Follow
Share

She is on comfort care only. She tells one person she has to go to the hospital for pain but tells another that she does not. Her comfort care means no hospital or invasive procedures, DNR, and meds for pain (sometimes she screams in pain but no reason for the pain can be found). I cannot deal with this roller coaster she is creating...she shuts down sometimes and will not answer the nurses or docs or me. Is there an answer? I do not even want to visit because she plays these manipulative games.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
A patch is a great idea.
Just have to be sure it's put on and taken off by a responsible individual. Have heard stories of those who forget to take off one prior to applying a second, which can be deadly. So the patch should be labeled and dated. That's how nurses do it in the hospital as well as documenting it. Also love the idea of putting oral liquid meds in Gatorade. Another great new supplement that has protein, yet tastes like fruit punch is clear Ensure. There are other off brands as well, but this one is my Mom's favorite. I think someone who would develop one with sugar instead of corn syrup would make a fortune. The elderly have taste buds that crave sweets.
Helpful Answer (2)
Report

Glad to hear the fentynal and roxanol have been started. Don't be shy about asking for an increase in the fentynal if her symptoms return.. It is interesting that the facility bans the use of recording devices. I wonder what they are afraid of? Your Aunt is clearly not been properly cared for and I would suggest a call to your State health board, the standard of care is clearly substandard. I see absolutely no reason for withholding water and ice what is their rational for that. Try and examine as much of her body as possible. If you can look as her buttocks check for reddened areas or frank bedsores. If you can't do that check her heels and elbows. If you feel comfortable. bearing in mind the confidentiality agreement you signed photograph any abnormalities. The State will be very interested in any evidence you provide. Consider if possible a move to a different facility. As a nurse albeit an old one these reports make me really mad.
if you find anything suspicious try and get someone to come with to see it so it is not just your word against theirs.
Helpful Answer (1)
Report

Thank you everyone. To IsntEasy, hospice is not involved; they say since she does not have a "terminal" illness, refuses to be weighed in the Hoyer lift, etc. she does not meet the 'federal' criteria to be admitted. To Veronica91, they do use the syringe but some days she is literally hysterical, says everyone is poisoning her and spits the meds out. The other day, she was so loud other residents families closed their doors. Doc finally agreed that since Mom was "irrational" he could listen to me as power or atty/healthcare advocate and administer the pain meds even though she refused. I have to fight for that every other day. (She has 1 good day and 1 bad day alternately; we cannot determine why that is the pattern). And even though it is not "fun" to visit her, she has no one else; the staff say she is usually more cooperative when I am there unless they let her get to the pain breakthrough stage where they screaming and hysteria begin.) When I arrive after not being there for a day, she is usually not washed, her poor mouth and dentures coated with "yuk", no nectar within her reach, etc. I have to stay on the case just to keep her clean and comfortable. (Some aides do more than others in caring for her basic needs; but she verbally and sometimes physically mistreat all the staff). To pstiegman, yes they are treating her for anxiety also; have been for years. To CarolLynn, yes the pain issue is sometimes "hidden" from the staff and other times it is loudly broadcast so all can hear. Her pain level is always 9-15 even if she is calm and quiet; they checked for a broken hip because she sometimes screams when turned side to side. (she already has a fractured kneecap from osteoporosis). She had hidden things in the past but has not been out of bed for around 6 weeks now; her PT did not progress and the Hoyer caused too much pain so she is bedbound. I have taken her favorite religious necklace home because it was found lying in her bed (the medal is missing and we have not told her, I just said it would be safer to keep it at home. Also done the same with her watch so she does not lose it also). I just told my hubby I really want to get one of those nanny cams and discreetly place it (to preserve some of her dignity and privacy) but I believe this is illegal in our state and it is in the patient agreement in the nursing that no recording/video device will be used. I guess I should consult an attorney if I can find one I can afford. (Already had the "free" consult when she was scalded from hot water they gave her because she "demanded" it.) To vstefans yes, I believe it is difficult for her to work through the pain and I do believe it is "unbearable" at times when she is moved to be washed, use the bedpan, etc. She accepts the swallowing with pudding but the problems come when she "refuses" yet cries in pain. As I said above, they will only "allow" me to demand the pain meds when she is in the hysterical, irrational, screaming, spitting, hitting mode. Believe me, I do not want her to be like a "zombie", just receive some relief. They seem to be on a better track now, (at least as of yesterday) using the fentynal patch, small does of Roxinol (morphine) if needed, even a scented diffuser to "calm" her. Still refusing most food except for two sips of cream of wheat in the morning, and ice cream several times a day. She tries to "con" everyone who sets foot in her room to ice and cold water (they say nectar only, but at this stage in her life, I give her the occasional ice chip a few times a day when I am there; I was told I could do this for her but the staff could not). Again, thank you everyone; I don't know how I could do this some days without your advice and understanding. I will suggest the flavored meds also, but so far the cranberry nectar after the liquid Roxinol seems to be acceptable. Hugs to everyone going through caregiving, whether at home, or in a facility.
Helpful Answer (1)
Report

BTW, the idea posted above about putting liquid flavored pain medication in juice is absolutely the best. I never had to do that with my mom because she never got to the stage for she forgot how to swallow like my dad did, but my aunt would spit out her pills and that didn't help him feel better. We gave her flavored liquid tylenol in her Gatorade and she slurpped it down without question. I know it made a world of difference.
Helpful Answer (0)
Report

Most likely she hurts but fears or has a difficult time swallowing pills. I heard one story about someone who had a bad side effect and was afraid they would have it again and just needed to be shown and reassured they were not being given the same medicine that caused the problem before. Patch or liquid could work. I would guess she is not playing games deliberately but can't reason her way through to solve the problem so ends up staying in pain.
Helpful Answer (0)
Report

Oy, I see where this is going to be another long answer. When my aunt was first diagnosed with alcohol dementia, the first thing they had to do was get her over the DT's from alcohol withdrawal. They gave her librium for the DT's and she told them she was always constipated so they gave her laxatives. She was in a neuropsychiatric residential Evaluation Program and I went every day for 2 months from just before lunch until bedtime. I could tell you things I witnessed but it's not in the scope of this answer. She complained to me of diarrhea but the nurses said she complained of constipation so they were keeping her on the laxatives because l had no proof she had diarrhea. It took me 4 days of lurking, which I imagine the staff doesn't provide time for, to find her poopy pants that she had carefully folded up inside toilet paper and stuff in a pair of bobby socks in her drawer. By the time I found an, there were several pairs thus, AND it seemed her underwear was disappearing. When I found them ALL, I showed them to my aunt and said what were you doing. SHE said she was going to watch them later because she didn't want anyone else watching her "good" undies (hers at home were a wreck - these were Kmart specials I had recently purchased for her). When I took her stash to the nurses station, I asked for a meeting with the head psychiatric nurse practitioner. I showed her the boocoo diarrhea panties, demanded my aunts removal from the laxative and informed her I expected to be believed next time, to which she agreed. She said by that time, nearly a week into the program, she gave me high marks for fortitude and observatiin, since most family members only came during visiting hours if at all. As thus was my first close at the experience with multiple patients, I asked her how they could not remember what they had for breakfast and indeed if they even ate, but could turn around and hide dirty underwear. She said they could be crazy like a fox!

Fast forward 6-1/2 years, and is in hospice after three strokes. She is in pain, I can tell she's in pain, she tells me she's in pain, I tell the RN she's in pain, RN ask her, she says she's fine. RN counsels me as if I'm a pill pusher. Auntie tells me again she's in pain, I've told the nurse and he thinks I'm her sister, it not her niece. RN goes back to Auntie, gets very close in her face and sweetly says your niece says you're hurting, how are you feeling? in a loud voice as if my aunt was deaf (she wasn't). My ant got a vicious and venomous on her face and snarled at the nurse, "That's none of your business; that's between me and my sister!" At my suggestion, about 10 minutes later the RN stood out of eyesight while I engaged my aunt in a conversation about pain. When the nurse finally heard my aunt say she was in pain, her medication was increased.

The moral of the story is sometimes they will only tell YOU, and sometimes they won't even do that. Symptoms are what a person can describe, "signs" as they are called in animal work, are what can be observed. Although you can talk to an impaired person, and they can sometimes talk to you, they are often fairly nonspecific with their complaints. For example, they might tell you it hurts, sometimes the general vicinity, no not always, and they won't be able to identify an exact spot or what they think it feels like. If you try to get them to tell you on a scale of 1 to 10, they have no clue what you're talking about.

As I just suggested on another post today, get a nanny cam and record their complaints and you're questioning of them over the complaints. This way, if anyone asks how they feel and they can't say, you can play a video where they at least talk to you when you're alone.

I just told the other person today that I saw a nanny cam in a mini digital clock for only $65. An SD card had to also be purchased, whatever that is, but it had all the features you would want, 2 hour recording time, "on" mod or motion activated, functions like a webcam and downloads video or photos to your computer. If my aunt and mom we're alive right now, I'd be recording.
Helpful Answer (2)
Report

Standard pain meds like morphine and other opiates can disorient them. We got Mom Tramadol which helps pain AND the anxiety, and Xanax as needed. Use whatever they will allow for emotional comfort as well as pain.
Helpful Answer (0)
Report

At this stage you have to watch for non verbal signs of pain such as grimacing moaning, holding certain areas or tightening muscles and use your judgement when she needs medication, she also sounds as though she is somewhat agitated and maybe could use some relief for that. Another option, if she does have a condition that could be giving her severe pain. Most pain meds in tablet form can be given rectally and there are Tylenol suppositories. There is also the fentynal patch which has to be changed every 72 hours and takes about 24 hours to be effective when first started. Another option is liquid morphine which is given in the mouth using a 1cc syringe without a needle. Even if the patient won't open her mouth the syringe can be slipped between the cheek. What is your role in all this? Do you just hate visiting because it is not fun. if so keep your visits brief and let the caregivers handle the pain issues. Make sure she is being properly cared for. Kept clean and dry and does not have diaper rash or bedsores. We need more information to really help you.
Helpful Answer (2)
Report

hello
my mom is lactose tolerance. MIlk and food with milk products such as icecream, including sherbert lasagna, cheese sandwich,pudding also chocolate. OMG there are foods to eat so that she will be in the Bathroom. Over and over and over. When she chooses to eat any of these foods she gets her belly ach then she's asking for medicine for her stomach ach.e I keep telling her if you eat those foods and get a belly ach and go to the bathroom you don't get medicingpe for your stomach. Sometime I think indirectly she want to try it out and see if it
" bothers" her. it does hit her right away, only when she's not expect it. She sti
Ladies not get it. My mom is aware of the foods that bother her.
Hope that helps.
Helpful Answer (0)
Report

My Mom constantly complains about the pains from her arthritis. Yet when we go to the doctor, and he offers her pain medication, she refuses it! I tell her she should just be like me and deal with the pain, and stop complaining. :-) I think it's more for attention than anything else. I don't take pain medication either, but I also don't complain to everyone.
Helpful Answer (1)
Report

Mom has arthritis and pain is worse some days than others. The doctor switched her from aspirin to Tylenol. She refuses now to swallow pills, no matter how small, so I give her three teaspoons of Children's liquid Tylenol (Cherry Blast) in acai juice with each meal. That way I know the pain is dulled and if she complains about something hurting, a heating pad and/or a cup of tea soothes her.
Helpful Answer (5)
Report

My Mom is doing the same, but for her, my sister says it is fear we will "put her in a nursing home" if she complains.
So one minute she's miserable, and the next she's fine. However if she moves, she's in a world of hurt. So dementia is playing a role in it as well as denial and a psychological component as well. Good luck these are hard times for all involved.
Helpful Answer (2)
Report

My dad, whose dementia is not very advanced, is increasingly a 'big baby' about even small discomforts. I saw a nurse pull off a bandaid on his arm (which is relatively hairless) and you might have thought she slapped him!

Plus, your mom might be in the restless phase of her decline and this pain/no pain could be part of that. Are there hospice nurses involved? They've seen it all and can probably sort out what's physical discomfort and what's mental discomfort.
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.
Subscribe to
Our Newsletter