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How Do I Recover From The Psychological Trauma Of Loss And The Emotional Blows Of Each New Decline?
My husband was diagnosed in 2018, then had a steep decline with the onset of seizures in 2020. He is now non-verbal, fully incontinent, non-ambulatory, and sleeps 18/24 hours. Still, he eats enthusiastically, and laughs out loud almost every day. He is sweet, silly, and sneaky. And now he is in hospice, because he is forgetting to swallow more and more frequently, threatening to choke and aspirate. Yesterday's topic of discussion was to sign or not to sign a DNR...Sometimes I feel capable… read more
@A myALZteam Member. You sound like you could use a laugh amongst all the craziness you are going through. My husband was in a NH the last 5 weeks before he died. This is about picking up on non verbal cues. I went every day to feed him. He was very alert one day, ate a good lunch, and we continued to sit in the lounge where I fed him. After awhile he got restless in his chair. I asked if his back was hurting, was he cold, did he want a drink and all the usual questions you ask. All were no. I finally asked if he wanted to go to bed. He looked up at me, smiled big and winked! I put my head next to him gave him a kiss and whispered “we can’t. There are too many people around here!” He had a good laugh. I smile whenever I think of that memory. I treasure those good moments when they came.
Cheryl, the courage and the vulnerability of people on this website have been of immeasurable help to me. This journey is a roller coaster with so many ups and downs. Each caregiver here is a warrior, but we are also human. Signing the DNR is not giving up, is accepting the reality of what is. You’re in my prayers. 🙏
@A myALZteam Member As a nurse I can assure you the a resuscitation is to get the heart beating again, but it will not work if they are dying from a terminal disease such as cancer or dementia. However, I know your emotional jerking back and forth. My husband had both AD and cardiomyopathy. When he was in the earlier stages I didn’t know if I could stop myself from doing CPR but yet knew that he didn’t want CPR, and what kind of life would I bring him back to. It would have been easier on him if he wouldn’t have had to endure the full scope of AD. It is perfectly normal to want to keep the love of your life going every second you can, and signing that paper is very hard emotionally. Sending you a big HUG..
CER, I am sorry for your loss and grateful for your peace and confidence in your decision. I’m so sorry about the trauma you endured before signing the DNR, but your sharing helps me realize it is time for me to do this as well. Your generosity of spirit in sharing is a blessing.
@A myALZteam Member after a 20 hour stay in the hospital because of a severe headache (very short-lived) and the sudden onset of Afib, I knew I could never subject my husband or myself to that kind of trauma again. When we followed up with our primary care doctor a few days later, I told him it was time for hospice, and he agreed. I was sobbing as I signed the DNR there in his office, but I knew my husband would not get better. Then the hospice social brought another DNR form, required by hospice, I think. Bill died on 6/12/22, two days before our 53rd anniversary. I was blessed to be able to keep him at home. I have no regrets and believe that everything possible was done to take care of him, to the last moment of his life. ❤️
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