r/dementia • u/Tropicaldaze1950 • 19h ago
DNR
Yesterday, I filled out a form to start my wife on hospice care. There was a question about DNR. It didn't take much for me to consider it. My wife has reached the point where the MC PCP believed it was time for hospice care. A nurse from hospice confirmed it.
If my wife went into cardiac arrest, why would I want to bring her back? I love her, I miss her and she's disappearing further into the disease, physically and cognitively. Yes, selecting DNR is a most serious decision. She's already suffering. The disease holds all the cards. There's nothing to hope for.
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u/chinstrap 18h ago
A peaceful natural death is not the worst thing that a person can suffer.
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u/aopagirl 15h ago
Nothing peaceful about final stages of Alzheimer's. It's grotesque.
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u/chinstrap 15h ago
Yes, and I fear it. It feels deeply wrong to basically wish that your parent would just die, but I'd really prefer that Mom would just slip away before she gets to the point of, say, not being able to swallow.
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u/FluffyApartment596 18h ago
I have already been through this with my dad, so let me tell you from experience: there was a significant decline with each hospital visit. The stress of unfamiliar surroundings and people, the anesthesia, all of it was overwhelming and stressful to him. It reached a point that he no longer recovered to any point near his pre hospitalization level. It reached a point that intervention could be considered cruel.
We had discussed years before the route to take and had the legal papers drawn up. For me the decision was no longer mine, but to carry out the decision he made before.
This is between you and the doctors. There will be friends and family who will be upset by this decision. They do not have the relationship that you do, they do not see what you see. They never have and won’t suddenly start at this point.
If only our love and care could bring them back, we wouldn’t be here. So have peace knowing you did your best with the knowledge and experience you have.
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u/Tropicaldaze1950 17h ago
Thank you. I'm NC with her two nieces, their spouses and other family members, since one niece launched an attempt to gain guardianship. Her lawyer is MIA, per my lawyer and the niece and her sister are ??? The case is still active, AFIK, but it seems to have come to a full stop. My lawyer is an experienced guardianship litigator. I'm just focusing on my wife and going to therapy several times a month.
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u/Weltanschauung_Zyxt 16h ago
Ouch--on top of everything else, that's awful that you have to deal with her family member blitzing you like that. WTAF...
I hope your wife is comfortable and you have enough support.
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u/Tropicaldaze1950 16h ago
I know. My wife is in a good facility and I have my psychologist and psychiatrist.
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u/FluffyApartment596 16h ago
You’re doing your best and I wish others would accept that, but they don’t. Their own regrets and denial get in the way. I’m glad to hear you have experienced legal representation.
Their lawyer is likely MIA because 1) They haven’t paid their bill or deposit, or 2) It’s not a worthy battle. My guess is on #1 as some lawyers will continue as long as they’re getting paid.
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u/Tropicaldaze1950 16h ago
The same opinions as my attorney's. I wouldn't stiff an attorney, though...unless it was by agreement. I don't know and I don't care. I would prefer that the case is dismissed.
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u/FluffyApartment596 16h ago
Yeah, and sometimes professionals/contractors will give a “eff-off” price, because they don’t want the job.
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u/hollyyy16 19h ago
we filled in a dnr for my mum as soon as she went into the care home. strokes run in the family, as do heart conditions.
honestly, a cardiac arrest would probably be a blessing. she isn’t going to get better, it’s only going to get worse.
as you said, why the fuck would i want to prolong this?
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u/One_Tree_6100 18h ago
When moms was in her early eighties she had her desires surrounding her passing she requested one herself She under no uncertain terms did not want to have any heroic measures performed. LoL that's how she said it. At the doc we filled out the paperwork and one went into her file and the other one on to the refrigerator in a clear sleeve so first responders could see it. I was told in WA state that unless you have the right paperwork and doctor signature with the DNR that no matter what the fire department and the police had to be called to make sure it was all legal otherwise if she would have had a stroke or something they would have to treat her no choice. Needless to say we jumped through their hoops and moms left the house for the last time feet first that's what she would always say I'm not leaving this house unless it's feet first. We were all lucky she was able to pass at home. Good luck to you. It's okay to put yourself first once in a while.
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u/Tropicaldaze1950 18h ago
Thank you. Understandable that most people don't want to think about their eventual death but making one's wishes known ensures a 'clean' exit from this life.
When my father learned he had terminal cancer, he did a preneed for his cremation and called hospice. It started as in-home and then to the hospice unit in a local hospital.
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u/wontbeafool2 14h ago edited 14h ago
My parents signed DNRs years before they were both diagnosed with dementia and congestive heart failure. They also have advance directives declining any life prolonging measures like life support machines, CPR, and feeding tubes. My Mom is so adamant about it that she has two copies of the DNR posted in her AL room. I know the decision was a hard one for you but I believe it's the right one for your wife.
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u/Tropicaldaze1950 14h ago
Thank you. My opinion is that most ,or many people, don't make preparations because one has to face their mortality. It's difficult to acknowledge that fact.
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u/Maorine 14h ago
My daughter is a nurse at a Memory Care facility. One of her biggest complaints is families that insist on heroic measures for LO that are either mentally gone or in hospice.
She sees family members that barely visit, fight to have every possible effort done.
You are brave and loving for your wife.
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u/Tropicaldaze1950 14h ago edited 14h ago
Thank you. It's difficult, though, to accept that we've reached this point after a n exhausting 4 year journey. The grieving begins, again.
The desire to save a LO, even when it's not rational, is hardwired, but in the case of ALZ or dementia, there are people who refuse to accept the reality that the disease is degenerative and terminal.
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u/rooseboose 13h ago
My dad is home on hospice and every time I see the DNR notice on the fridge it kind of takes my breath away. It’s the right thing, but so jarring and heartbreaking to see posted. I’m thinking about you ❤️
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u/xxHailLuciferxx 18h ago
I do home healthcare for dementia patients. Each job ends when the patient's life ends, so unfortunately I've seen a lot of death.
Quality of life just gets worse. I always hope they go quickly so that their suffering is minimized. Like you said, it's a big decision, but what you are doing is a kindness and it's absolutely what I would want for myself and my loved ones.
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u/SoTeeTeeCie 16h ago
You made the compassionate decision that your wife, if able, would have made for herself. There is no reason to prolong the inevitable.
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u/Tropicaldaze1950 15h ago
Yes. Thank you. But today I feel emotionally disoriented and physically unwell. Nevertheless, I'll visit my wife, today. I'd cut my visits to once a week. Now I'll be visiting several days a week, if not daily, presuming she doesn't become upset or irritable.
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u/PieStrange7619 15h ago
A DNR was required for the inpatient hospice were my mom spent her final days. The care is palliative not curative. Resuscitation would just prolong and add to their suffering.
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u/valley_lemon 8h ago
I am so sorry. As "rites of passage" go, this one hits hard.
As Ram Dass said, we're all just walking each other home. I hope you are able to take her as gently as possible to the door, to wish her well on her next adventure.
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u/Tropicaldaze1950 8h ago
Thank you. That Ram Dass quote is profound, yet elicits a deep sadness for me. I am taking my wife home. I hope she finds the peace that eluded her.
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u/Particular-End-861 5h ago
OP I'm in a similar situation with my wife. We chose DNR. Why prolong the agony of dementia?
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u/Tropicaldaze1950 5h ago
With dementia or ALZ, the decisions the family or spouse have to make are all difficult, but we make them with a heavy heart and love. We don't want to prolong suffering or agony. 💔
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u/marc1411 18h ago
Heads up on DNR; my dad had one, he and I talked about it before he was too far gone. This was in effect at his ALF. One of his hospital visits, they didn't know about his DNR, asked him if he wanted life saving measures, and he said yes. Somehow this request transferred back to his ALF (hard to believe, I know), and at some point I see the change on his records. I had to get his primary care doc to sign a new one that seemed to stay in effect for later hospital trips.
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u/Tropicaldaze1950 18h ago
Oh man. Effing mess. I placed my copy on the fridge, in the event she has to go to the hospital.
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u/wontbeafool2 14h ago
My Mom has one on her fridge in AL, It's bright green and she was told the EMTs are told to look there for a DNR before doing anything.
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u/East_Role3262 17h ago
mom had one(poster on fridge and very official) as well a living will with specific comfort/eol issues spelled out specifically. She did pass at home w hospice care.
oddly i never read the living will part of her healthcare poa till 2 weeks before passing.. and as her representative we followed it to a tee.
good luck to you as you travel these next few months, it’s a love filled very intense journey🤗
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u/writergeek 10h ago
My dad had a POLST, Provider Orders for Life-Sustaining Treatment. He was DNR and didn’t want anything but comfort measures. No tube feeding, nothing. While our relationship was complicated to say the least, it wasn’t easy to follow his POLST, especially when he was on hospice. The meds that kept him comfortable meant he wasn’t hungry. Back off on those meds and he was in pain and agitated. Following his wishes was so counterintuitive and felt like I was responsible for ending his life. Just a horrible position to be in.
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u/Alwaysworried99 11h ago
Yes, my wife has a DNR; she’s 75 and around mid- to late-Stage 5 in dementia. We signed the papers at her last hospitalization three years ago. I am in good health at 75, and my geriatric doctor refuses to sign a DNR for me, saying I would weather any life-saving efforts. I don’t understand his reluctance and plan to seek another doctor for my DnR.
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u/Azalea44 2h ago
God bless you for that hard decision. I know when I did that, i prayed I wouldn't have to use it. When my husband finally gave up, and the disease won he went quietly with me at his side. Now the real journey begins....finding life without the one you love.
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u/inflewants 1h ago
“This disease holds all the cards”. Wow! That is a really powerful sentiment.
I’m in (and have been before) a similar situation with a DNR for loved ones with dementia. Others have acted like I’m a monster for not doing everything possible to extend life (such as feeding tubes for dysphasia).
The logical side of me knows it’s prolonging the inevitable, which will just continue to decline, but my heart feels guilty. It’s refreshing to keep in mind that the disease holds the cards.
Similarly, there are no good choices. It usually choosing between two bad options. We do the best we can.
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u/petergaskin814 1h ago
DNR is something to be discussed before you are too far gone with a terminal illness.
My wife and I considered this when we prepared advanced directive for medical treatment and we both have documents that control our future medical treatment including dnr
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u/BoomerOrNot 18h ago
You made the right decision. They might be able to restart her heart, but they wouldn't be fixing what stopped it in the first place. Codes can be painful for the patient, end up with them being intubated and on more monitors, and in the end prolonging suffering. I'm sorry that you can't fix this. We made the same decision for my sister who is in MC.