My friend has started the dying process. How do I comfort him so he will stop trying to stand up?
My friend is 76 years old and suffers from COPD and heart issues. We
hospice at home and he sleeps in a power recliner for comfort. He started visions/hallucinations and wants to get up out of his chair. Hospice nurse comes once a day on a schedule and today for the first time, I called for a nurse to come over in the middle of the night.
Sometimes he just says, "Up, Up, Up", or "Please, let's go". While saying these things, he scoots to the edge of his recliner and puts his good arm out (lost use of right hand when he had his first stroke in his 30's) and wants me to help him stand. I have helped him up a couple of times, but fear he will fall and pull his catheter out.
He has swelling in his legs and can briefly stand with my help. I don't know what else to say when he asks me to help him up. Sometimes it seems he is looking through me. I promised him I would be here for him and not let him die alone.
I fear that if I stop helping him stand up and agreeing to his wishes, he will feel betrayed and not trust me. His medications do help but as the days go by, they are increased and changed as his body fails. What should I and can I do?
You sound wonderful and caring. I can see how scary this is. Have you asked the hospice nurse how to cope with this? Sometimes we caregivers are torn between helping our love one do what he or she wants all the while knowing that it's risky.
I will say that this stage isn't likely to last long. It's possible the hospice nurse can talk with the doctor about the hallucinations, since that could be caused (or made better) by a change in medication.
You need to ask yourself if you will feel guilty if he falls and gets hurt. Again, I'd talk with the hospice nurse and/or doctor and ask directly what is the best way to handle this.
Take care of yourself, too,
Carol
After a very long and upsetting day, we finally had a breakthrough, thanks
to everyone here!
Don and I have not been able to communicate very well for a couple of days.
I try as hard as I can to "decipher" his sounds and hand motions and it
becomes VERY frustrating for him. He has had pain on the left side of his
body for the last 2 days. He has physically and verbally avoided taking
medication. He also refused my help in both ways. It came to a point he
starting to moan a try so hard to readjust in his chair but could not
find a position that he could stand. Yet, he refused medication.
After reading everyone's kind words and advice, I said to Don, "It's just
you,me and God....we have to find a way to communicate". I then asked him,"Does
something happen that you don't like when you take your medication?". He
responded with a weak but understandable, "Yes". WOW! Needless to say,I
was shocked! It all came down to not wanting to be "knocked out".
Since we had this moment of communication, I started to explain how I came to
find agingcare.com. I told him that numerous people on the site have had similar
experiences and valuable advice. I explained the Haldol information and some
reactions of patients. I asked if he would like to stop using it to see what happens.
He shook his head up and down! WOW!
Since he was still "with me", I offered a suggestion. I would read every bottle to
him before preparing his oral syringe, so that he knows it is for pain and shortness
of breath. Not "agitation" or to "relax" him to sleep. He breathed in deep and exhaled with a slow nod up and down of his head. I offered that if he needed something different and he wanted to take a nap, we could use Loraz if he chose. He has used Loraz for a while, with no bad outcomes. He agreed again. WOW!
I will move past some things, it is too painful and infuriating to speak of right now.
A brief step back, I called and lefta message at a local Catholic church yesterday requesting Sacraments for Don. A priest called and arrived at our home shortly after the call. There was some confusion, he thought I needed the Anointment. That was cleared up and he proceeded to ease the way home for Don.
It was very overwhelming for my friend. While accepting The Father, he tossed and turned in pain.There was some obvious comfort in his posture when the blessing was complete. Shortly after, Don decided to have some Hydromorphone, and regularly every hour for pain. Once the pain medicine was accepted regularly, I was able to find the source of his pain.
His hip area was hurt/injured when the hospice nurse gave him a phenobarbital suppository. I was not present at this time, I was sleeping. The respite caregiver was on duty and the nurse showed up to check Don and admin the phenobarb. I came to find that he was moved to the bed and laid down to apply. Don has a power recliner that will lay completely flat, I don't understand why he was moved. After making sure he was comfortable, I called the hospice team and made them aware of
the situation.
We had a loooong night. I will never forget the sight of him in so much pain and asking me not to help him. In so much pain, and pushing me back away from him. I respected him and sat in silence, holding back my frustration and trying to hold back my tears. I believed he may have thought I would see him in so much pain and not keep my promise of only giving him pain medications. I reassured him he could trust me and slowly....we began to lessen his pain.
The afternoon today came with a hospice nurse call to schedule his daily visit. I requested that the nurse that came yesterday, should not be put into rotation at our home. The visit brought a sight for sore eyes. A loving, compassionate, soft spoken and nurse with years of knowledge.We had a great visit and she helped to arrange pillows to maximize possible rest positions for Don. This visit brought a calm over Don and a recharge to my drive.
Now I sit typing out my thoughts and experiences while my respite caregiver sits with Don. Her name is Melody, she was here last night with her husband (Jeremy). Her husband watched over Don while I rested on the couch. Melody sat out in the living room with me, I did not want to overwhelm Don with too many people. Especially new faces. Melody is new as a caregiver but seems to be a natural human being and loving person.
I type to share with everyone and to NEVER forget these days of my life. A small trivial little chunk of my last that lifetimes of lessons have been taught to me and learned. I am only 36 years old.... but still learning. My elders were right, I will never stop learning and I will never "figure" it all out.
Thank each and every one of you for your kindness. I was flushed with comfort from each response I read. I will thank you each individually, soon. My eyes burn and my heart is heavy.
May God bless you and hold you close.
Shawn
Then I would make sure Melody (my respite caregiver), was ok and he to my chair in the living room. The whole time Don has been in hospice I have set up many things to monitor him. I had intercoms, but he could not use it with his failing vision and limited hand/arm use. I set up a wireless camera that would stream via the internet. I would carry my laptop around if I left the room. When my respite team showed up, I would take the laptop with me and set it on the table next to the couch. I really could not sleep without taking a look once in a while at the camera. I needed to make sure that if he was in pain, I would know about it.
It was 15 minutes until his next dose of pain medication as I sat back in the couch. I fell asleep.....just a minute to rest. I woke up with Melody calling for me. It was time. I ran into the room and sat on my foot stool. I placed his hand in mine and began to say goodbye to my best friend.
I said to him, "It's Shawn, I'm here. It's you and me. God is here to lift you up and take you home. I love you and will never forget you. Let the pain and suffering end. I'm here with you. You are not alone my friend." His last breath was long and slow, then nothing. I began to recite The Lords Prayer and he started to exhale again. It startled me. Time had stood still. I looked at the time on my watch and let the second hand go around twice as I continued to pray. His breath was gone. I checked for a pulse on his neck. It was over.
I pray, Hail Mary. I opened my arms up wide to my sides and thanked God. Thanked God for helping to lift Don up and carry him home. I thanked God for ending his
suffering on earth.
Don passed away at 8:05pm on April 8,2013. I waiting a little while in silence as a calm passed over my body and mind. I let my girlfriend know he was gone and then called his VA doctor. His VA doctor is an amazing man. He had nothing to do with the hospice program but still called everyday to see how I was doing and making sure I was taking care of myself. I left a message for him and notified another friend of ours.
I asked Melody if she was okay and she was fine. We spoke for and shared life experiences for a few moments. I then called hospice to let them know. They sent a nurse out and called the funeral home. The nurse showed up, removed the catheter
and destroyed the medications. The funeral home showed up a short time later and discussed the paperwork.
I asked them to wait until I made it down to my room before they carried my friend away. I then led them into the room and said my final goodbye. I kissed him on the
forehead and promised we would see each other again.
My girlfriend and I went downstairs to talk and remember our friend. After about an hour, I did not hear any more noise upstairs. I went up to his room and sat on his bed. I looked around the room and thanked God for his kindness and mercy. I will miss Don and keep him in my heart for all times. I will cherish the time we spent together and the memories made. He made me a better man.
To all of you kind people, I thank you, I thank you. Hugs and Love to all.
Shawn
I asked for the advice of the hospice nurse this morning. She agreed that
helping him out of his chair further could result in injury. You put it very well Carol,
causing him pain would tear me apart. The nurse was vary vague about how to handle the
wanting to stand. I have been trying a few things that have helped in the past couple of
hours.
What happend next caught me off guard. I was asked if I believed increasing
his haloperidol would be a good idea to help Don relax. Given that it did
help him relax and is in liquid form, I agreed. I was shocked that
I was included in the decision.
The nurse gave him 1.0 mil Haloperidol and it took him 1 1/2 hours to fall asleep. He woke
up a little over 2 hours later, restless and trying to get out of his chair. I feel so
bad right now. I had to give him methadone while he was up. I didn't want to wake him after
finally falling asleep. Then more Haloperidol about 15 minutes ago. He is still restless.
I wait...............
Thank you Christina,
I ask Our Father that Don may know peace from his suffering. I ask The Lord
to meet Don and guide him home to be free. I ask for the strength to help carry
him if he falls and help him home.
I thank you all for the advice and kind words.
Shawn
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