I was speaking to my brother today about mom’s situation. Oh boy, it is hard facing the inevitable. Having concerns about a few things.
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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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?
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But there are gentle ways of explaining it is very unlikely to become addicted, and if so, the medication would not be withdrawn during life.
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?
So, should they not tell her? That’s a thought. I will discuss this with my brother.
Thanks.
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.
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?”
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.
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?
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.
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.
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.
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.
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.
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".
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.
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.
Thank you for your comforting words.
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.
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?
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.
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
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.
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
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.
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.
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.
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!
I never turn down prayers. I appreciate it very much.