No help for you, but my heart goes out to you and your family. (((Hugs)))

So sorry to hear you have this big load on your shoulders. Did you look up side effects online? Could help you to see what others have experienced. Let us know what you find out. By the way, salty foods will often make me feel antsy.

I read this article the other day from Hospice and it is talks exactly of what we are experiencing. http://www.hospicepatients.org/terminal-agitation.html

She can't go into Hospice residency yet because she is actively seeking treatment for cancer. She has been taking an oral chemo drug for the last week. She has an appointment at the Cancer Clinic next week and depending on the results of tests that things may change. Her chemo pills are more than $2000. for 30 pills and if the oncologist didn't think they would help her the government would not have funded them so we shall she. My cousin who had stage 4 lung cancer lived 7 years after her diagnosis. My sister wants to live and will do anything that may help her survive. My sister isn't in a lot of pain or distress right now except for the anxiety and not being able to take care of herself which is why she ended up with me.

Oh, I hope you will insist the doctor change her med. If she didn't have this problem before starting the pills, then I would say it's not agreeing with her system. This is the last thing you need!

Having a PSW worker come in to relieve you would do wonders, especially to help at nite.

You're doing so much for your sister, God bless you!

Atiivan is supposed to EASE anxiety, not cause more. Perhaps it's not as effective because of the other meds, but for whatever reason, PLEASE bring it up with the NP!

Ask them if there is anything you can do to get more assistance. You shouldn't have to be bearing this burden alone. Ditto Anglophilla. Please take care of YOU!

Anti anxiety meds can react differently in individuals. What is supposed to calm anxiety sometimes actually causes it. There are many other medications which may work better for her. I agree with others that you need to get some help. I know the weather isn't the best right now but if you can manage 15 or 20 minutes outside each day you may feel a little better. So sorry you are having to go through this and can't imagine how your poor sister must be feeling. My thoughts are with both of you..

Here is some info on the drug that may help you.

http://www.webmd.com/drugs/2/drug-6685/ativan-oral/details

There is a section on side effect in someone older.

Anxiety is one of the listed side effects for Ativan (see Adverse reactions on pp8-9). If you ever have questions about a drug, pharmacists are a great source of information.

https://www.pfizer.ca/sites/g/files/g10017036/f/201505/PM_Ativan_Clean_E_Level_3_10-Oct-2014.pdf

I don't want to sound like a horrible person, but I have taken care of someone in the latter stages of their life, and he was also very difficult. He became incontinent and refused to wear diapers, and often I was met by a horrible mess each time I came over there, which was daily, at least one time or up to four times and sometimes I was there all the time except for going home to feed my animals. He refused to lay down on the bed...sat on the edge, head in his hands until he almost wore holes in his knees from his elbows on them. I begged, pleaded with him, to no avail to lay back on the bed because I was afraid he would fall asleep and topple over onto the floor....which he did a couple of times. He was no relation to me, so I had no say in putting him in a home to be cared for. I had promised to take care of him, and I did....for years. I think I prolonged his life, even as he was shortening mine. Sometimes you have to realize that as much as you love a person, you have to take care of yourself. You might consider putting her in a care home. You can visit her and still have a little time for yourself. If you have to do that, don't feel guilty. Sometimes it is for their own good. I know you can absolutely wear yourself out and run yourself ragged trying to do the right thing and take care of a person in their final stages of life.

Cherry, if I'd seen this earlier, I would have asked do you have the number for the hospice doctor, can you call him and tell him her anxiety has increased? Additional anxiety isn't a common side effect of Ativan, but it can happen. Her falling could be attributed to it too, interfering with her balance - it could even contribute to her becoming demanding and unreasonable, all the things its supposed to make better. Not everybody has the same good results from a drug.

If you can manage one more night, be sure to tell the nurse practitioner tomorrow about the falls, anxiety. I'm sure you will hesitate to mention the toll this is taking on you in front of your sister, but please be honest - it really is time for family honesty.

You're having trouble keeping up with the demands and needs, you can't help her at all if you get sick too. Let us know what the nurse practitioner has to say tomorrow. All this care 24 hours a day just cannot come from one person, you need some reliable scheduled help. ((((hugs))))

Thanks everyone. I have just decided she is more than I can handle, she needs more care. I thought taking care of my Mom for all those years was hard but it was a breeze compared to what I am dealing with right now. Health care system wants to keep patients at home for as long as necessary to keep them out of the hospital and will pay for the care at home but she needs 24 hour assistance. They say she is not ready for a nursing home but could put her in a rehab/ continuing care facility but if she went off her chemo pill she can go right into Hospice residency which would be ideal for her and there is no time limit. She could be there for a good while despite not being treated for the cancer. I talked to my sister in law and we are going to try to get her cancer clinic consult moved next week instead of waiting until Dec 12 and then if her prognosis isn't the best we can get her off that chemo pill and move her into Hospice. I keep nothing back from her nurses or Nurse Practitioner despite my sister not liking me voicing my concerns. She is getting good care from everyone except I am the one failing her so that I have to rectify by getting her out of here I can't get her to settle, she lies down, she sits up, this has been going on for hours. I don't think I can go to bed tonight for fear she will try to get up and go to the bathroom like she has been doing on her own. I can't risk her falling again.

Was she uncontrollable before taking the ativan?

My heart goes out to you for this struggle. I have no advice except to take care of yourself and do what you know in your heart is right, even if that means that she needs to go into some sort of care facility. Lack of rest is going to make you sick.

(((((Cherryfizz)))))

You are not failing her! Please don't be hard on yourself, it sounds like you are doing your best and nothing more than that can be asked of you. ....it's going to be OK, you're tired and she doesn't feel good but there will be some answers for you. See if you can't get a little rest tonight.

I sure wouldn't give her the pill tonight, but I guess it's too late for that. I'm so sorry for this extreme stress!

Mdln, she had some anxiety but not like she is having now. I have never seen her so unsettled before. She doesn't know why she is feeling this way. I am sure it is caused by the change in her meds. She was put on Ativan, the Hospice Pain Management Doctor changed her pain pills from oxycontin to something else, 1 mg 4 times a day which she was prescribed because it helps with her breathing not so much for pain relief. She was taking the oxy for hip and shoulder pain. I am thinking she is having withdrawal symptoms as well. The day they changed her pills she was so anxious that night I had to call an ambulance even though I figured it was just anxiety. She couldn't breath. She just wanted her pills. The last few days she has been so anxious she has been yelling at me to give her pills. I think before she took them as often as she thought she needed them. She thinks I am keeping her pills from her. We had the pharmacy put her pills into blister packs and she is only given enough of her prescriptions to last 7 days. I document what time I give her meds to her every day and what times I give them so I don't miss a dose. Her pain pills are as needed so she doesn't always need to take one. She was also taking 2 sleeping pills at night along with Gravol but she was like a Zombie so I asked if she could take one sleeping pill instead and so far it has worked. I have never taken a sleeping pill in my life and the only other pills I take are Advil or Aspirin so never have experienced withdrawal from medications. I took Torodol when I broke me knee years ago but as soon as I was better returned them back to the pharmacy. I am not feeling so good after having made this decision and feeling a bit emotional while she lay sleeping finally without a care in the world.

((((cherryfizz)))), I hope you can get care for your sister and then take care of yourself as well.

Good observation, sounds like it could be withdrawal symptoms from the opoid oxycontin, as well as possibly a paradoxical reaction to the ativan.

Encourage you to contact the NP or doc about her meds - first thing tomorrow AM. You might want to let them know how long she was on the oxycontin, and how much she may have been taking.

Palliative care is to help manage symptoms and relieve suffering. If someone is addicted to opoids, cutting them off "cold turkey" is likely to cause significant symptoms.

Take care of the caregiver Cherryfizz.........someone in your sisters condition is similar to the 36 hour day Alzheimers patient.You are not being selfish whatsoever,and you are certainly NOT failing her....take care of yourself,so that you can take care of her.......sending you long distance hugs from 6 hours away.

Here's alist of side effects of ativan. Please note:

Call your doctor at once if you have any of these serious side effects:

• confusion, depressed mood, thoughts of suicide or hurting yourself;
• hyperactivity, agitation, hostility;
• hallucinations; or
• feeling light-headed, fainting.

So the hyperactivity and agitation could very well be from the drug. But talk to a doctor as you don't want to take her off a drug like this cold turkey either.

Since she seems hell-bent on taking certain meds, is there any way you could get a placebo to give her so that she thinks she's getting whatever it is she wants?

share, that's not good advice :/ I agree with Annie, you can't just take someone off their meds or insert a fake.

No, I didn't mean to take her off anything, just add in a placebo when she is demanding meds that are already accounted for... if that makes sense!

Whew.

Oh golly, it certainly sounds like she's having withdrawal. I can't believe they just took her off of a narcotic, cold turkey! That is quite a cruel thing to do--no wonder she was going nuts and poor you, for having to deal with it all. I would request a different doctor because the one that changed the drugs was very irresponsible.

YOU are not failing her! If anything you've been her savior. Please don't be so hard on yourself.

Please let us know how it goes!

"They say she is not ready for a nursing home"

I wouldn't just take what 'they' say, especially if it is a situation where their decision saves them $. Most of the time there is an appeal process. Use it.

cherryfizz, my cousin, (who lives in your same city) was given medical marijuana during her battle with colon cancer, to ease her anxiety and help with pain as well. I realize that with breathing problems due to lung cancer, inhaled marijuana wouldn't be appropriate. But perhaps you could find out if her doctors would consider some other form (tablet???) of marjuana to deal with her extreme anxiety. Your'e in my thoughts and I wish the best possible outcome for your sister, and for you, in whatever choices are made.

Marjorie had a good sleep last night and I was able to get to bed by 3 am but I didn't turn my fan on in my bedroom like I usually do so I could hear her if she got up and that she did at 4:30 am to go to the bathroom. She was almost to the bathroom door when I heard her so I got right up, helped her and then got her back to bed. I woke up before she did this morning which is unusual but I am sure she was exhausted from the anxiety she was feeling. She was really good when she got up, really no agitation, ate most of her breakfast and had her coffee by the time the Nurse Practitioner arrived. I told her everything that was going on, we discussed the medications and I asked about withdrawal and she explained the new pain pill Marjorie was given was in the same family as the Oxy and stronger (not fentanyl) so there should not have been physical withdrawal symptoms. I mentioned to her about the Ativan and most of her anxiety didn't show up until she started taking that. We decided to to take her off of it, she hasn't been taking it long and to see if that helps with the anxiety. She is taking 2 other pills in the morning that deal with anxiety and depression and her sleeping pill tamazapam is made of the same ingredients as the Ativan which is why the Hospice Doctor did not want to up her dosage. My sister is taking heavy duty antibiotics intravenously until today so that may have contributed to the anxiety as well. I told her about the newest fall and told the NP I think it is time my sister received better care than I can offer. She said she was surprised I was able to handle it as long as I did and said usually with my sister's condition they need a team of health care workers. I was lucky though and my sister had nurse visits and psw's to bath her. My sister also has severe acid reflux with a lot of stomach pain and since she has been on the chemo drug she has had to stop the medication that helps with that because the chemo drug works along with stomach acid, my sister's enemy. So she has been miserable with stomach and the acid forcing herself to throw up after eating because the acid is so bad. That was not good. So we discussed that the chemo pill was not going to cure her and if she went off of it she could resume taking her stomach meds and maybe start to feel better. She agreed to that. Now that she isn't on the chemo drug she can go into Hospice Residency which had already been set up so possibly tomorrow or Monday she will go. The facility is just a few blocks from my house and I have friends who volunteer there and I can even bring the dog to visit her. So she agreed to go into Hospice. Better than a nursing home or a continuing care facility. My sister still has all her marbles, the NP asked my sister a lot of questions to test her cognitive abilities and she answered every question correctly except for the year and she said 1916 but said right away that was wrong. She had 2 naps today and even napped through a nurse visit to remove her iv pick. She will now be getting oral antibiotics. She was doing quite well today ex cept she started feeling anxious a few hours ago but I have been able to get her to focus on doing her word search book. An evening Personal Support Worker will be coming in the evening to help. She will be here from 11 pm to 7 am in case Marjorie has to get up to go to the bathroom or whatever else she needs if she wakes. We also had a bedside commode delivered tonight so she won't have to risk walking to the bathroom. I hurt my chest today trying to get my sister to walk 2 steps back to the edge of her bed and haven't felt well since. I am also at the beginning of a vertigo episode which I hopes does not manifest until she leaves because the meds I take for that when it happens knocks me right out. This is the best decision for my sister. She will have a better quality of life than what she is having now.

Share, last week when my sister was demanding pills I had some vintage candy someone gave me called Candy Buttons. They look just like tablets but really don't have any taste. When she demanded her pills I gave her one of the candies and she settled right down. I told the Nurse Practitioner that I did that and my sister just glared at me haha. When I went to give my sister her pain pill tonight after she asked for it she said it better not be the candy. We laughed. I will miss my sister when she leaves and so will my animals. I do feel badly though that I am just not able to keep her here and give her the care she needs. Thank you for all the advice and tips and support. Everyone here at the KT helped me tremendously all those years ago when I took care of my Mom and it was very much appreciated. My sister believes the power of prayer so if you have any good thoughts and prayers you can offer she would appreciate it. She said all you have to do is say her name Marjorie.

Thank you fir the update. It sounds as if things are working out for the best.

Hooray, thank you so much for the update. You've been on my mind all day, wondering how your night and day had gone. This sounds like the best resolution for both your safety and comfort and of course hers. I know you feel a responsibility for her and I'm sure you'll miss her, but rested, you can see her often if she isn't far away. And you'll enjoy her more if you are feeling better, there will be more quality to your time together. I'll say a prayer for her, and I hope you have a better night tonight.

cherryfizz, you are so brave and kind to look after your sister. We don't get to know what is in store for each of us but I would hope my sister would look after me like you have for yours, if needed. I will pray for both you and your sister; its a beautiful name, Marjorie. Take care.

You're doing the right thing.......Prayers going up for you,((((Cherryfizz)))) and Marjorie!!!

Cherryfizz you are a wonderful person (sister) and I am in awe of what you are doing. Please do not lose sight of the fact that this is an extremely difficult and trying situation and you are truly doing the best you can- which is way more than most would be able to do. I am so sorry for the struggles and hope things improve and get more manageable. Wishing you lots of strength (and please be good to yourself and trust yourself). With admiration-

Wow! You are to be congratulated for all the hard work and effort you've put in to take care of Majorie, and are continuing to do to see that she's in the best position possible for the changes yet to come. I'm so glad for both of you that this is working out the way it is. Thanks for the update. I've been thinking about the both of you.

I remember my Mom viewed caring for her Mom as a chore as that's all she had time and capability of doing...she was there to feed her, do dishes, clean her up, do laundry, take care of the house, etc. Once her Mom went into the nursing home, then her visits became a pleasure as she was able to chat and take her to bingo, read books together, etc. It wasn't that it was less time, but that that time was so much more meaningful for both of them.

This is the decision I'd long hoped you would both reach. You gave Marjorie the gift of time she needed to come to this freely. Let us know how the transition goes. Many of us will be assisting a loved one going into hospice -- or making the decision for ourselves.

I know you will be trying to catch up on your own health, and you will be missing Marjorie -- and there are all those darn house repairs! The KT is here for you.

Good luck with the transition - for both of you. I know that you're doing the right thing and not just for you but for Marjorie as well.

Oh this is good news. You're doing the right thing, obviously and I'm glad she sees it that way as well. You will miss her for sure, but it will be nice to have your own home and routine back.

Ann, so glad you are getting help for you and Marjorie. You both are in my prayers.

It is wonderful for your sister that you are devoted to her care and looking out for her well-being. It's great that she's able to go to hospice and give you some relief from the obviously complex care that she requires. Kudos to you for doing this.

Oh Cherryfizz, I'm so glad you were able to take this step!! You have gone waaaaay above and beyond for your sister, more than most anyone could have handled. The lack of sleep alone must have been horrendous. I'm really happy for you both that you can now settle into an easier situation so that when you visit Marjory, you can both enjoy the visit. I will say a prayer for Marjory and for you too. Sleep well!

(((hugs))) This is the best decision you could make.

I will add your sister to my prayers. (and you too!)