I am reading about Hospice, and it brings up the question When is pain real? How is mental anxiety different than other types of pain? I guess I am asking this because they way Hospice treats pain, in cancer patients is morphine. DW has episodes of panic attacks, to her it is very real and will breath hard, sweat and will have a fight or flight type of response. She is taking Seriquil for the panic attacks and xanex for anxiety. yesterday the hospice pharmacy delivered morphine, something I was not expecting, and it says for shortness of breath. I called the nurse and she said it was a mistake and that the pharmacy will pick it back up. That did not happen today. I am wondering if anyone else has dealt with this issue in late stage.
its my opinion to treat any signals of pain as just that. since my DH cant verbalize pain but only thru bodily responses, ie grimacing or looking in distress -i am treating it. now its tylenol or low doses of otc analgesics but i wouldnt hesitate to use something more potent if it continued. we have used lorazepam (ativan) at times as well. and i use a lidocaine suppository for rectal/bowel discomfort as needed. we got a packet from hospice in the beginning that says not to open unless directed by a nurse or dr as it does contain more potent meds. morphine is by rx only and is used to give relief for shortness of breath usually during the dying process from what i know. since my DH cant take morphine we have already discussed other options of medications as needed. fentanyl patches are also good as vicodin and some others. i would not feel good allowing my spouse to suffer pain of any kind in these last stages. we just never know what they are going thru.and for me mental pain is the same thing and i would definately treat. divvi
We had Hospice for abouty 3 months, and they did some rearranging of DH's meds. The results of that have been maintained by his PCP. For pain one Vicodin 5/500, 4 x a day (I can give more as needed; maximum 10) I've only had to add 1 or 2 a couple times, as relates to a new injury (fall). He's on Lorazepam 1 mg , total of 5 a day(3 during day and 2 to head for bed.) again an extra if needed at night to settle. Anxiety. When we were going through the med changes right after Dx, he was complaining of pain off and on all the time. OTCs weren't cutting it. Dr. said much was residue of old med. side effects. The Tramadol he was on worked for awhile, but then we started getting break through pain which then had to be dealt with. Since we went with the Vicodin and the Lorazpam, the only time he compains of hurting is when he has actual incurred a new injury. The meds aren't causing undue sleepiness either. In the med box from Hospice was some morphine, and we did use some for shortness of breath, but only on nurse's direction. There were other meds in there we never touched. That box is a "just in Case" source, to hav e available if things get critical.
I did not get a box for just in case. Did anyone tell you what and when to use what is in the box? I do not want my DW in pain, but I am not sure how they classify anxiety. She is in good health, otherwise.
i am not crazy about keeping her medicated to keep her from anxiety, In the morning she is clear headed , but soon will start getting worked up and crying.
my hospice told me what was in it and what each was for. i opened mine (instructed by nurse) a while ago as they had the adult tylenol suppositories in it and i used them for fever. i would ask your hospice dr if you have concerns - getting worked up and crying wouldnt be something that would make me easy either. sounds like maybe your wife has sundowning issues as the day wears on. there isnt much to do but medicate to keep the moods stablilized. but if you are not happy with the meds maybe the dr can offer another type to see if it works better.
Lately DH has started biting on bottom lip and grinding teeth until they bleed. He cannot tell where or if he is in pain. I just look for signs that he is extremely uncomfortable. Blood on teeth is a new one. I administer pain pills and liquid ativan as needed.
Similar to carosi, H, though not end stage uses lorazepam @1mg tid. Unlike your wife, moorsb, his worst times for agitation, delusions and anxiety are in the am. So one lorazepam starts the day along with generic keppra which I have been told has a calming effect (rx for his seizures, which preceeded dementia related dx by several years).
I think morphine is similar to generic demerol (meperidine, sp?). I know it is an old drug; don't know about its half life, but I think it is a bit less strong and less adddicting ( I'm not saying that is a concern for you, I'm just throwing it out there.) Years ago generic demerol was used quite frequently in hospice but has generally not been a go-to for quite some time.
For anxiety but not for any pain relief, you might want to consider (generic) buspirone. It is not at all narcotic. The question is, does it do anything? I think the reviews are mixed on that. It has though, been used for the kind of anxiety related to irritability and physical presentations such as dizziness and heart pounding.
I have seen anxiety turn into a very frightening ordeal for my loved one. DH has always been an anxious person but yesterday was something else. DH always gets out of bed in the morning around 5:30. Because I stay up later than he does, I stay in bed until 7:30. At 6:30 I woke up to his fingers running all around my face and asking me if I was okay. I said yes so he left the room. When I got up, I could see he was agitated, telling me that when he went into the kitchen, NOTHING WAS THERE! It took me a minute to figure out that he meant my place at the counter was blank, placemat was gone! I had thrown it in the laundry night before. The poor soul saw my place had nothing so he right away thought I had left or died. That was why he was checking my face. I explained why there was no placemat but I couldn't console him. If nothing else, that incident proved to me that he realizes how dependent he is on me. He talked about this for hours and I could see it had a real profound effect on him. On one hand, it felt good to be regarded so importantly but on the other I realize my strong husband is my little toddler. So, what do I do? I cry buckets.
That is axactly what is going on with Kathryn right now. Late stage and severe anxiety and panic attacks. Last night was the worse yet. She was really upset and whispered in my hear and told me someone was going to rob me tonight. I told her it was the TV and that normally works but not last night. She was so sure it was real that she couldn't stop being upset about it. A little later she thought someone was after her.
Most times I can calm her down but not with these. They are evidently so real to her that once she starts worrrying about it she can't let it go, She becomes very worried and starts crying and there isn't anything that seems to help right now.
MOorsb*, did you ever figure out how to calm your LW down?
this type of paranoia and hallucinating is when medications are needed unfortunately. when their lives become fearful anxious and saddened by the evidents that tend to be so real to them. i try to put myself in that position and the thoughts are terrifying to be in that world where the mind is their worst enemy. if it were me, i'd be trying to find yet another combo of meds to help relieve the symptoms. i know meds are hard to manage but so is this for our loved ones. as we well know, some meds can be tolerated better than others. divvi
I am learning very quickly that tv doesn't really help unless it is the Saturday cartoons. DH just starts fixating on those detective shows and imagines other stuff going on. I find distraction the best. The minute he starts telling me his "tales" about the neighbors and people coming in here and taking stuff, I take out kiddie picture books and start talking about the animals. I don't think he can even follow those childish stories. Until now, I have not used any of the meds but I know the day is coming when I will have no choice.
A Hospice nurse and social worker came over today. After talking about my concerns and doing blood preasure and a few other things they called a Doctor and tolk him what they were thinking and he wrote a perscripyion for Seroquel 25 MG to take one at 6:00pm each night ( a pill). and for a Topical cream with a mix of Lorazepan 1mg, Diphenhydramine 12.5 mg & Haloperidol 2 mg to be used as needed. It was delivered to my door with in two hours. You wear rubber gloves and rub one ML of this on her shoulder. It is very fast acting.
I gave Kathryn the Seroquel 25 MG and she mellowed out and got tired both. But it is the first evening she has not had an anxiety attack. She had a good evening and was very calm.
I am so glad you have the meds needed. Thank goodness they are helping. I am writing down the names and when the time comes I will suggest same to dh's pcp. It is so difficult to see our LO's tortured by these disturbances of the mind.
I was going to reiterate what Divvi said, but I see you have already received some medicine to help your dear wife. Seroquel was a good friend to Lynn, and it allowed me to keep him home longer. None of us want to medicate our LO but, neither do we want them to suffer needlessly. Breaks my heart to think about what must frighten them, and it makes me very grateful there are medicines available to help bring them comfort and peace of mind. Very glad to hear she had a good evening! I know this means your evening was better as well.
JImB--Seroquel was a lifesaver for us as well. It's interesting that the topical mix contains Diphenhydramine--I've heard over and over at conferences that it shouldn't be given to dementia patients--that it disorients them and makes them more confused. Perhaps combined with the other ingredients you listed, it is beneficial in calming anxiety. Diphenhydramine is the active ingredient in Benedryl and many OTC sleep aids and allergy meds, and is supposedly a no no for dementia patients.
My hb was on Seroquel for 4 years and the only discernible side effect was weight gain. After 4 years the benefits wore off and he was switched to Zyprexa.
jim this is the same topical med i was given by hospice dr. its called ABH gel, ativan, benedryl, and haldol combos in varying degrees of dosage. it did work quite effectively and fast, as you remember i posted i didnt use a glove and got a dose of it myself. :) this drug was effectively used in chemo patients mainly but its economic and can be rx'd in different doses very low to higher and seems to be convenient to use in ansy anxious AD dementia patients. yes marilyn i also have always known they say benedryl and overthe counter allergy type meds shouldnt be used, but i have used it successfully with DH over the years for sleep aides and stuffiness as its otc and seems to produce LESS side effects than the more potent meds for relestness at least in our case. there seems to always be negatives to any of them used so its like pick and choose which side effect you want. :) this ABH was working really well and i can use as needed but not continuously as it tends to build in DH system as does most meds for him due to renal issues. DH slept all night using this gel mix. jim i hope you have good results with the seroquel and this one. divvi
haha i told the hospice dr what happened to me, and she smiled and said let me know if you need another batch. :) hehe. maybe we caregivers should be getting the ansy restless meds as well.:)
the first thing they told me was to make sure about waering the gloves so I wouldn't get medicated too. I read up on the neds and it did say that the Diphenhydramine was not to use for treating dementia itself but could be used for other problems as needed. I guess also they probably feel that it isn't going to do any harm at this point and that they benifits probably outweigh the problems that could arise. So far it has only been two days and I haven't needed it and I may never need it. Last night was not a good night for kathryn but had nothing to do with anxiety. She was unresponsive and not able to fuction in any way to assist herself or me me in helping her. Once I was able to get her into bed she when right to sleep and when she woke up she was fine.
jim you may want to wait and rub the gel on her after you get her into bed. again, i am no doctor, but if she gets too non responsive you may need to only use the gel every other night or as needed and not every day=but ask your dr. i found using it every other day gave enough time to allow the meds to do their work and then have time to be eliminated some before the next round to avoid buildup in the system too badly. i think with any med each of our spouses has an individual tolerance.