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Of course, mom is experiencing many Parkinson’s symptoms, including some rigidity and pain which is common in Parkinson’s disease.


This is awkward and painful for me to speak about. It dredges up painful memories going back to my early childhood. I will try to explain this situation to all of you.


Most people here know that my oldest brother (deceased) had a serious drug addiction to opioids.


Mom is suffering but is afraid of addiction because of what she lived through with my brother.


I respect my mom’s fear but she’s 95 and obviously suffering.


My brother is with her now. I am going to see her shortly.


Anyway, he said that she stiffened up, is in pain but couldn’t talk to him. Not sure why?


She has had problems with being able to express herself.


The only thing my brother was thinking to make her comfortable was to increase her pain meds.


The hospice nurse and aides are wonderful at reading her body language when she is in pain and can’t speak.


So, she’s on a regular schedule of pain meds, pills, not the liquid morphine because mom was refusing the morphine but the pills don’t seem to be helping her all the time.


They are offering her the morphine.


My brother and I want her to be free of pain which is the entire purpose of hospice.


What should we tell mom to calm her fears about receiving the morphine?


Please advise me as to what you feel is best regarding this matter.


I know that she isn’t delusional about getting well or anything like that.


She doesn’t seem to be afraid of dying either. In fact, she has long been ready to leave this world to join my father in the afterlife.


I’m concerned and upset that she is worried about becoming addicted.

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Thanks in advance for your responses. I really appreciate all of you on this forum.

It really does help to hear what others have experienced.

Please share if you have gone through a similar situation with a loved one in hospice. How did you resolve this issue of fear of addiction?
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Need help, I would explain this to Hospice the exact way you did with us, and ask them. They are the ones administering the medication. The truth is that pain meds given when there is REAL pain seldom does addict people or even appreciably alter their mentation in ways it does an addict. But in large amount it may.
This isn't a case in which you can really shout "Look! you are DYING anyway, what does it matter". But there are gentle ways of explaining it is very unlikely to become addicted, and if so, the medication would not be withdrawn during life.
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I had morphine once in the hospital, and I completely understand why people get addicted to it. I asked the nurse administering it if it would get rid of the pain, and she said, "No, but you won't care anymore." That was EXACTLY how it made me feel, and it was fantastic. It took all my concerns away, and I was so truly comfortable, which was the goal. I've had other painkillers at other times, but none ever made me not care about the pain any longer. They took care of the pain, but my state of mind wasn't any different like it was with morphine.
That feeling would be my goal when I'm dying -- just not worrying about it -- and I'm sure that's one reason why hospice gives it to patients.

The most common thing we all do with our loved ones is the little white lie. Does she need to know she's getting morphine, or is she competent enough to refuse it?
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NeedHelpWithMom Apr 2021
Yes, they have told her what it was. She’s pretty ‘with it’ and is aware of everything.

So, should they not tell her? That’s a thought. I will discuss this with my brother.

Thanks.
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Thanks, Alva.

I am going to see mom in a short while.

My husband had a quick errand to run. Leaving for hospice as soon as he gets home.

I am going to tell her what you said, that it is okay for her to take meds when in pain.

It is difficult to see her suffering like this when meds are available.
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So sorry you’re going through this, I know it’s a tough road to walk. My thought would be not to discuss her specific meds with her if at all possible. Morphine was a godsend in my dad’s final week, made him comfortable and calm. He wasn’t always out of it. The hospice nurses were great about instructing me in its use. They were also great at explaining things to my dad, your mom's nurses may be better able to calm her fears. I only referred to my dad’s Ativan, morphine, and other meds as “medicine” and he accepted the answer. I pray your mom will also, and wish peace for you all
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NeedHelpWithMom Apr 2021
I agree. I am only thinking of her being comfortable as time goes on in this situation.
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Thanks, Notgoodenough

I will take all the prayers that I can get.

Mom has a sore from being in bed. The nurse came while we were there.

When the nurse went to change the dressing, and turn her to a new position, mom said in a low voice, “Stop.” She hurts when they move her.

Mom seems so weak now that she can’t speak in full sentences.

The nurse explained that she had to move her. Mom seemed to understand and didn’t say anything else.

When I told mom that I loved her, she struggled to say ‘I love you’ back to me. I told her that she didn’t have to speak to me, that I understood that she is very tired.

I hate watching her suffer. She did accept the morphine tonight.

I suppose that she is wearing down from the pain and fighting this dreadful disease for so long.

I tell you, I find myself asking God what my mom has been asking him, “Why can’t He take her home so the suffering will be over?”
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Daughterof1930 Apr 2021
So very sorry, my heart hurts for you both. My dad asked me repeatedly “how much longer?” and I heard him asking God for it to end. It’s just heartbreaking. Prayers continue for rest and peace
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Ah, glad to hear your mom is accepting the morphine now, thank God. Watching and witnessing this level of pain and suffering, and the degree the human spirit hangs onto life, is both horrible and amazing, both at the same time.

Have you let mom know it's okay to go to be with your dad now, that you'll be fine? Sometimes they hang onto life for US, thinking we need them to stay here. Hospice always recommends we let them know it's okay to let go. I hope your dear mom does transition soon so she can be at peace and done with all this pain and suffering. It's so hard for you, too, and I'm sending you a hug and a prayer that God ends this struggle soon. I remember watching my dad struggle for the last 19 days of his life, and it was truly the toughest period I've ever been through myself.

Prayers for courage and strength in these hard times, my friend.
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NeedHelpWithMom Apr 2021
Thanks so much for understanding how I feel. It helps me to not feel so alone in this.

My younger brother is steering away. He did the same thing when daddy died and when my oldest brother died in hospice. I guess that he can’t handle it.

My older brother has to leave before our visit because only two people can visit at the time during Covid. At least we speak to each other on the phone. Our younger brother has sort of disappeared.

I guess that I should say those words, but the last few days I am kind of numb.

I lost it when the nurse and aide told me that she has been clutching her rosary. Is that the pain or fear?
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Came back late this evening to check on you. Glad to see the morphine is happening, it will ease things. One other note, I hope you won’t get distracted by mom being alone or not. The final time is very much a solo journey, I’ve seen it in different ways with both parents, and the thing so many focus on of “not dying alone” doesn’t matter. She knows your love and support, the rest of this she travels on her own carrying that love. Peace to all...
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cweissp Apr 2021
I agree, some wait for their LOs to leave the room/area to die alone. My husband's family was together in MIL's room when she took her last breath. I was glad we were together with her.

Dad wasn't alone, and I'm sorry I wasn't with him. He was sitting in his recliner in the common area with other residents in the area. Mom had just visited him and left. They say he died shortly after she left, but I don't know if they knew for sure when he actually died. I got the idea he was asleep in his chair. While we knew he would die, the hospice RN had called on Monday saying he was still pretty feisty and trying to climb out of his wheelchair - on Wednesday he was dead, I was surprised and relieved all at the same time. His long journey was ended.
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Oh Needhelpwithmom, I am crying for you right now. On Thursday before my mother passed, the last thing she said out loud to the nurse that was standing over her was “5 pills, 5 pills!” My mother knew and remembered that she took 5 pills every day when she was home. The nurse gently told her no she wasn’t getting 5 pills but they were giving her (something else). The something else was morphine which we did not tell her. The next day she was in a coma and gave her morphine every 4 hours and then at the end after 2 hours.

Morphine is the end. My father knew it so at the end we never told him. We never told my mother either. Listen to the hospice nurse. They will guide you. They know. They will play soft music for your mom. You don’t want your mom to suffer. Morphine will take away the suffering. Tears for you right now. It is so incredibly hard. Prayers going out to you for peace for you and peace for your mom.
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Needhelpwithmom, let me also say that you do not have to be with your mom at the very end. It’s a personal choice. I wasn’t with my dad when he took his last breath and neither was my mother. My mother had gone to bed upstairs and I had gone home that night.

I didn’t plan on staying with my mother till the very end either. My brother and I were going to get up and leave at 9pm when he decided to ask the nurse for a ginger ale. She came back with this GIANT pitcher of ginger ale. We weren’t going anywhere anytime soon. So when she took her last breath it caught us off guard. The whole room went quiet and my brother ran out to get the nurse. I said my last goodbye to her but I know I probably wouldn’t have stayed till the end if my brother wasn’t there.

Its a personal choice. You don’t have to stay. Sometimes our loved ones pass after everyone has left the room. Prayers and hugs to you. Peace for you and peace for your mom.
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NHWM, glad mom is taking the morphine. There with you in spirit. (((((Hugs)))))
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How do you tell her that getting addicted doesn't matter since she is on hospice.

Things have changed but years ago I read an article where a man was in the hospital and the man next to him was dying of stomach Cancer. The man asked why the patient couldn't be given Heroin and was told because it was addictive and illegal. The man was terminal what did it matter if it was addictive he was dying in extreme pain. TG things have changed.

Mom needs to know that the morphine is there to help her. That she can control what she gets and doesn't get. If nothing else, it could take the edge off. Wouldn't it be nice to spend you last days on this earth as pain free as possible. Then she can leave this world peacefully.

My GF was a juvenile diabetic. She passed at 63 from kidney failure. She was a woman of faith and I think that got her thru. When I saw her at the viewing she looked so peaceful with a slight smile. When I commented on the smile to her husband he said it was there after she passed. Yes, she was on hospice the last 2 wks of her life.
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NeedHelpWithMom Apr 2021
I couldn’t agree more, JoAnn. I don’t want mom to be suffering.

It’s so sad that she feels badly about taking morphine.

The nurse is wonderful with her and that helps a lot.

Mom does have faith and I know that is a great comfort to her.

That is so wonderful that your friend died with a smile. I would feel like she was at peace when it was her time if I saw that too. Hearing that gives me hope for my mom.
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NHWM,
This part: "Anyway, he said that she stiffened up, is in pain but couldn’t talk to him. Not sure why?"
"She has had problems with being able to express herself."

That is part of the neurological symptoms of Parkinson's, and are a bit different in each patient, and the symptoms can come and go. When our neighbor 'froze up', he also could not speak at those times.

So sorry this is such a bereft time NHWM. Trust the hospice nurses to say the right things to your Mom, such as "We would never give you enough Morphine to cause you to get addicted." Remember those instructions on little 'white lies?'

At this time, if Mom can tolerate it well, a very soft massage (legs/feet) may help the pain and your Mom to relax. Ask if the nurses are providing that.

Visit as you are able, with no guilt. I remember she had been happy to see you visit, and that is probably still true. There is also advice to not stay too long
for the patient's benefit. Your choice.

As you say a gentle goodbye to your Mom, remember there are so many caregivers here behind the scenes, having your back, thinking of you, and praying to the God who cares for you and your Mom. (Brothers too.)

Like Barb said, "there with you in Spirit".
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NeedHelpWithMom Apr 2021
Thank you Send,

I wonder if mom would like a soft massage. I am going to ask the nurse about it.

I know that Parkinson’s disease effects everyone differently.

It’s so interesting to me how some diseases have improved so much throughout the years.

It takes so much money for research. I hope one day they will find a cure for it.
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Dear NeedHelpWithMom, you mentioned that your mom’s nurse and aide observed she’s been clutching her rosary: I assume that is a form of self-comfort. It might also prove spiritually comforting to your mom if someone would read her some simple prayers such as the following:
https://www.kofc.org/en/resources/cis/devotionals/basicprayers.pdf

Best wishes to your mom and your entire family in helping her find physical and spiritual comfort.
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NeedHelpWithMom Apr 2021
Maybe it is more self comforting than fear. I hope that is what it is.

Thank you for your comforting words.
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I think it would be best to talk to her doctor. He/She can prescribe medications in many different forms - pills, liquids, injections, patches, creams - and with varying strengths and varying duration. The doctor needs to know that her current medication regimen is not meeting her need to pain management. Also let the doctor know about your mother's hesitancy to take liquid pain medication.

As a nurse, I have been able to disguise medications in applesauce, other pureed fruits, pudding... because I have had clients that either could not swallow well or would routinely spit out oral medication. These methods may be worth a try.
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My dad was 90 when his malignant melanoma cancer was causing him extreme discomfort. He had AZ, RA, neuropathy and a host of other ailments. Tramadol became ineffective and morphine was prescribed. He was adamant about not taking it. I told him the doctor was prescribing “a child’s dose” and assured him that when it’s used appropriately for pain it’s exceptionally effective and not a problem. He opted to go without pain relief for 3 days and was miserable. I told him I’d respect his decision, but reminded him there are no trophies for handling pain that’s easily remedied. I asked why he wouldn’t try a child’s dose and see how he’d feel. Dad had syringes we’d squirt in the side of his mouth/ no pills to struggle swallowing. Reluctantly he tried it and was amazed how much better he felt! I told him how proud I was of him stepping out of his comfort zone to be proactive & stay ahead of the pain! It worked for us. People hear morphine & associate it with dying, but it’s much more than that & works quickly and effectively! Good luck!
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It makes complete sense that your mother wishes to avoid a drug she considers evil. You can see why she would hate it. Look what it did.

But she is confusing two things: the drug, and addiction.

She is being offered the drug at a therapeutic dose for palliative purposes under medical supervision. The drug will relieve her pain. It will not trigger addiction.. What happened to her child is that, using the drug for recreational and self-medication purposes, he suffered addiction and was unable to escape it.

She may be unable to overcome her very understandable and long-established aversion. You can get her the best advice from the best communicator available and that might still be true. I really hope not, but in the end it's her pain and her choice. See if anyone can get an anaesthetist, pain specialist, or older age psychiatrist to spend five minutes with her focused on explaining the blunt facts - it's got to be worth a try. Or is there anyone else whose opinion she would really value? - a religious minister perhaps?
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NHWM,

Soo much good stuff on this thread. You really are helping those who come after you.

I’m praying these days go as peacefully as possible for you all.

Gentle hugs to you and your mom.
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You can also relieve your mom's fears by telling her than an extremely small percentage of people taking pain medications get 'addicted'. Those with chronic pain that regularly use such medications are dependent on them so they can function with daily living, depending on their genes. They've actually found those who become addicts usually have certain defective genes. Combined that with depression, personal issues, etc. - often leads to addiction. Also, the body converts most pain medications to morphine once metabolized anyway. If they are injecting liquid morphine it is more effective and quicker acting. Pray that she passes peacefully.
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I am a former alcoholic! I stopped drinking in 1988 and I have not touched a drink since the day I promised God that I was done!

Some would say that I have an addictive gene, personality, or any other term people use for people with addictions.

In 1996, I injured my back doing my own yard work. After 2 failed back surgeries , one in 96 and the second in 97, I opted for pain management instead more invasive back surgeries.

I have been prescribed narcotic pain meds since then. I have never run out of my meds early, never taken more than prescribed, and never lied to try to get more meds. The few times I have been to the ER, I have told them up front that I am on narcotics, so they will know that I am NOT seeking drugs.

Yes, since I have been on narcotics over 25 years( except for about 6 weeks after the first surgery and 5 months after the second) my body is "dependent" on narcotics, my mind is not. Someone who is addicted to anything needs more and more to get the feeling they are looking for.

To me, there are 2 kinds of pain med dependency, one is an addiction and the other is dependency. A true addict has a physical need for the narcotic AND an emotional need for the drug.

I hope this helps you as you look for ways to help your mom.

GD
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Grandma1954 Apr 2021
very well stated.
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Yes it is possible to become addicted to pain killers as well as other medications.
Taken responsibly and when there is a need is different than taking them because you want to.
I know the Hospice I volunteer for (with/at?) has patients sign an "opioid agreement" that they can not get opioids from any other source other than the Hospice. The control is pretty tight. Also All doctors are facing a lot of scrutiny when prescribing pain killers. So they, at least the honest ones, are more reluctant to over prescribe.
I will tell you what the CNA from Hospice told a friend that was VERY resistant to give her husband Morphine....
The body that NEEDS it will utilize it in a different way than a body that does not need it. (this poor woman's husband was so constricted he could barely breathe, I told her that the small amount of morphine would allow his muscles to relax so that he could breathe. It would not be so much that he would be "out of it". I don't think I or the CNA, or the Hospice Nurse ever got through to her)

See if she would try the morphine if it is administered by a nurse, and let the Nurse observe her reaction to it and discuss how she is feeling after having her first dose. If she feels uncomfortable about it after that it can be discussed.
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Hospice is about ensuring quality of life over quantity of life. Part of that quality of life is accepting that chronic health issues can not be cured. Another part of quality of life is making sure that discomfort does not interfere with moment-to-moment quality of life. Medication can play a part but so does
1 - Repositioning every 2 hours
2 - Propping sore limbs on pillows or underneath bony parts in contact with the bed
3 - Warm pads (usually for stiff joints and achy muscles) or cool pads (for injured areas)
4 - Gentle massage and stretching limbs - called range of motion exercises
5 - Music the client enjoys
6 - Reading or being read to things the client enjoys
7 - Spiritual practices - prayer, communion, visits for faith leaders... all of client's preference.
8 - Warm lotion gently massaged into dry skin
9 - Gentle cleansing of skin and oral membranes (mouth can get super dry if client doesn't drink enough water)
10 - Quiet, calm tones when addressing those who appear drowsy - nobody likes to be startled awake
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NeedHelpWithMom: Imho, while your mother has a very valid concern about taking pain medications due to what she witnessed with your late brother, she is reliving no doubt the h**l that she went through in trying to assist him because it is ingrained in her memory. However, similar to a contraindication, the benefit that she will garner in taking these needed medications has no bearing on her recollection.
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Could the hospice nurses hide the liquid morphine in some juice?
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This only showed up in my "queue" today, so too little too late! At the least I can send some big virtual hugs.

I see several comments saying she's taking the meds now, but didn't see one from you NeedHelpWithMom... Hopefully she is taking it and it is helping with her pain. The only thing we can assure them is that they are getting measured doses, dispensed by nurses, to manage pain, not taking it to get high or drown our sorrows or pass out. Those addicted will do anything to get the next dose, to maintain absence from physical or emotional pains.

Hope your husband's doing well too!

Anyway, I hope she's a bit more relaxed and pain free or reduced pain for now. Reducing or eliminating the pain can help her relax, and not be so tensed up.

It can be difficult to be there when they do take that last breath, but sometimes it is closure for you, knowing they are no longing in pain or suffering. It is up to each of us to choose whether we can handle it or not.

The pastor hospice sent wanted to say a prayer before he had to leave. The SW was there too. I gave him leave to do his thing, as I'm not really religious, but didn't object if he felt it was the right thing to do. Just as he was finishing, I suddenly realized mom wasn't breathing anymore. She just slipped away quietly while he said his prayer, so I told him he must have given her leave to go! I was right next to her, holding her hand and really didn't notice, it was such a peaceful passing.
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NeedHelpWithMom Apr 2021
Mom was conscious when the priest came.

I know that she felt comforted by his prayers. She was able to receive communion too.

I am glad that your mom had a peaceful death. That is what I wish most for my mom.
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The hospice staff is amazing. I am grateful. I don’t know how people do this at their home.

Mom is getting scheduled does of morphine now. She’s non responsive.

I appreciate all of you. I can’t stop crying. I thought that I was prepared but I start shaking and thinking about memories. Is that normal?

I just want mom to be at peace and with my dad.
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againx100 Apr 2021
However you respond is normal. It is different for everyone, no right or wrong. It sounds like she will be with your dad soon and her suffering will be over. Which will be good for both of you. Take care of yourself.
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NHWM,

Sounds normal to react that way, at least to me! I also imagine grief will be peaks and valleys for quite awhile.

Thanks for checking in.

Praying for you!
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Thanks, cxmoody.

I never turn down prayers. I appreciate it very much.
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Need: I just saw your update now that your mother is taking morphine. In heavy prayer for you now. 💖💖
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