Assisted Living and DNR (Do Not Resuscitate)

Such good points @victorkach. While one can't possibly foresee all the "what ifs," talking about preferences and what you and you wife value and what quality of life means for you, will help future decision making. It helps ease burdens and possible difficult choices in the future. Do your adult children find these discussions difficult to have?

@colleenyoung My husband passed away Jan 3rd. FTD APHASIA/ALZHEIMER'S 4 yrs along. Had covid early Dec.. No ventilator. No lung issues. Severely dehydrated malnourished in nursing home. Not eating or drinking. Not able visit since Mar. 2020.as directed by Mich. Governor.Trans to hosp. Dec 18..then Dec 24 to Hospice facility. We did not know how he had digressed with dementia. Window visits were only connection since Mar. 2020.. He was very receptive and seemed to know us. Laughing, etc. But of course not vocal except a few yes, no oh!! Apparently he "was kept comfortable" because of DNR in file. It should have been changed we did not know we could. He was not given IV fluids during his covid since DNR in place at nursing facility. Released from hospital with vitals back to normal. But his aphasia was advanced. So he passed. Might have been better outcome if DNR was Changed. Even tho he got over covid it was listed on death certificate as cause of death. I'm disappointed in myself as POA, etc. Angry at nursing home to say nothing of my shock of his passing..he was eating pureed food and thickened liquids after released from hospital. I am missing him terribly. Bottom line!!! DNR and end of life wishes need to be reviewed on occasion. I wish I knew that. Sorry for my rant. Thankyou.

@dianajane First, my sincere condolences on the loss of your husband. And now to say "thank you" for the very real example of how we need to review our decision making paperwork every so often, to confirm it aligns with our desires and wishes.Please do not continue to beat yourself up. What happened, happened. By sharing your experience with us, you have helped countless others.
Ginger

Well, hello, fiesty 76. It's wonderful reading you message. I've been out of the loop, off-line, out of kilter, elsewhere, fighting alligators as we say and do in sunny Florida.....the last several days. I found my son on the kitchen floor several afternoons ago after finishing appts at Mayo. He was unconscious, couldn't rouse him so called 911, took to Mayo Hospital. He was there in ED for a day, in hospital couple days. Home on Thursday. He had an episode in the car with me getting his meds, so I just drove him to Mayo hospital ED.
I brought him home last night. He's not ok, but with God's help will be soon.

He'll have home health care soon....nurse, PT, OT, and I'm hiring a housekeeper for a couple days weekly at first to help. He's willing to have the medical help now, will be seeing the movement disorder specialist neurologist this week which will begin the help he desperately needs....address the whole person finally! He'll have people in his life for the first time in 19 years!

Dystonia is a horrid illness. It's taken away his life...19 years fully disabled, unable to sit at or type on a computer, everything hurts....serious muscle pain with every muscle contracting all the time!!! Never relaxes...and a ne in nerve firing 24/7 in his shoulder/neck, constant nerve pain and loss of use of his arm w/o screaming pain. He's reached his limit every way, physically and emotionally. He's completely exhausted. But, now he gets some help!!!!

He was an immigration lawyer, good and caring, and hit with this mess as his life was going well, thriving. His life has been taken away.
Now, finally, we have a doc who knows what is happening and hopefully knows what to do. There are now treatments, even to brain surgery, and knowledge which is fairly new about dystonia. He simply needs, has to have now, proper care and treatment.

I'm tired. This has been a long journey down this road of life. I am a mama grizzly bear and I've been fighting fir my cub! I haven't been able to help him like I wanted, just support him and love him and be there. Now, there are people who can help.

To catch up re my health, it's been on hold obviously. I begin this Friday with pelvic dysfunctionality testing....GOODIE! Then digestive and esophogeal tests to get me back to that warm pool and some walks. I did walk in the hospital for my good but also as a relief from the drama and emotions. I

'm working now on focusing on my emotional health, some music, some meditation, some peace. Although, I'm on the way now to Rob's condo, across the street, just to chat. He wants to talk about what the docs said and have lined up. I want to rest! BUT, friends, when do mother's rest? He's 53 year old....a kind, lovely person who is totally alone but for me, his mother. That's pitiful...poor fellow.

My wonderful new bed will be delivered, installed and the old mattress and 2 box springs removed....white glove service as Macy's calls it.....please be the comfy bed I think it is!!!!!!! Also hope I made the right decision to get box springs rather than the metal adjustable frame. May have to rethink that in the next 24 hours!

Going to see my boy. Blessings to all of you and your personal journeys. Btw; one thing we're chatting about today....DNR, decisions, living will, health care power of atty....all things we've discussed but never completed. You and this discussion have pushed me on.
Thank you for that and so much more. elizabeth

@colleenyoung My husband passed away Jan 3rd. FTD APHASIA/ALZHEIMER'S 4 yrs along. Had covid early Dec.. No ventilator. No lung issues. Severely dehydrated malnourished in nursing home. Not eating or drinking. Not able visit since Mar. 2020.as directed by Mich. Governor.Trans to hosp. Dec 18..then Dec 24 to Hospice facility. We did not know how he had digressed with dementia. Window visits were only connection since Mar. 2020.. He was very receptive and seemed to know us. Laughing, etc. But of course not vocal except a few yes, no oh!! Apparently he "was kept comfortable" because of DNR in file. It should have been changed we did not know we could. He was not given IV fluids during his covid since DNR in place at nursing facility. Released from hospital with vitals back to normal. But his aphasia was advanced. So he passed. Might have been better outcome if DNR was Changed. Even tho he got over covid it was listed on death certificate as cause of death. I'm disappointed in myself as POA, etc. Angry at nursing home to say nothing of my shock of his passing..he was eating pureed food and thickened liquids after released from hospital. I am missing him terribly. Bottom line!!! DNR and end of life wishes need to be reviewed on occasion. I wish I knew that. Sorry for my rant. Thankyou.

@dianajane, You make such a good point of the need to periodically review end-of-life decisions. My deepest condolences on the recent loss of your beloved husband. What a difficult journey you've been on. Please be kind to yourself as you grieve.

It seems to be human nature that following the death of a loved one, we tend to berate ourselves with a lot of "if onlys, and what ifs". It has taken me months to get beyond the anger I felt about what "should have but didn't" take place following my best friend's long illness and recent death.

Your post didn't strike me as a rant at all and served to impressed the importance of periodically reviewing our end-of-life decisions. My hope is that with more time, your thoughts will dwell more on the lovely times you shared. I don't think the "missing" ever stops but time can bring us to a place of more peace and thanksgiving for that very special person's place in our lives. Thank you for your post. Thinking of you, Diana, and wishing you comfort.

@ess77, I cannot imagine a more valiant warrior fighting the many alligators you and your son have faced, Elizabeth. It is both heartwrenching that you both have struggled so long without receiving the treatments that would enhance your son's life and heartwarming that you finally have hope from Mayo Clinic!

You have to be exhausted from your efforts, the grief for your son from his loss of career and chronic pain. The physical and emotional toll for you both deeply touches all of us who have served as primary caregivers. I am celebrating that he will begin receiving in-home help that is so needed and will give you some relief as well. "Just being there" for him is sometimes the best gift one can give another. I'd say he was a very lucky fella indeed to have you at his side!

Please keep us posted on how treatments go for both of you. May hope, peace and less stress in each day find you giving yourself more time for restorative healing as well. It will take you time to relax from the hypervigilence required over such a long period of time so be very good to yourself and liberal with self-care now that more assistance is on the way.

Eager to hear how the new bed works for you!

Hello, fiesty76. You are such a joy. Your thoughts and prayers have buoyed me and given me comfort in the knowledge that I'm really not alone. We're really not alone. I cannot explain to you what a remarkable difference you and the others from Connect have made in my life. This last 6 months or so have been troubling, frightening, challenging. I was running out of hope for Rob's future. I am indeed exhausted from these years, it's taken it's toll, but as I've found Mayo and Mayo has brought so much healing within my body and spirit, I've found new strength from within. I have hope. We are seeing the beginning of a breakthrough in his hell.....

He saw the Mayo dystonia specialist, a leader in this field.....and is now officially his patient. He is scheduling Rob with other departments and specialties for diagnoses, treatment plan. He will take over his botox injections, the one treatment that gives him some relief. Now he will get the treatment from the best!

How wonderful is this!

I was watching my son withdraw into himself and fearful I was losing him. I've spent several days with him helping him understand the doctors with whom he'll be working are special, care and tops in the fields. They can be trusted. Today, I began to actually believe this is happening. Hope has arrived.

Thank you for giving your gifts to me. The support I felt from you and the others has given me strength to stay strong and calm. I can almost breath. Almost hope.
Blessings to you, from me.
And, thank you.
elizabeth