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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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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 19, 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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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 21, 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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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 17, 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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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 17, 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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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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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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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 21, 2021
very well stated.
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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 22, 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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NHWM, glad mom is taking the morphine. There with you in spirit. (((((Hugs)))))
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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 22, 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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