Follow
Share

I feel my Mom currently has no quality of life (see below for background).


Back before dementia started she wrote some explicit health directives. Under those directives we would not hospitalize her again. We would call in hospice. My brother tried to talk to her about this when she was in the hospital and she said she wanted to live. Shortly thereafter she told my sister that if she had to stay in her (great) adult family home, she would rather die.


I don't think Mom can really understand her options at this point. She can communicate and answer questions, but I don't think she can really put it all together. I think when she says she wants to live, she is thinking of living like she was able to live years ago, not how she lives now. I think if the Mom of 5 years ago could see where she is now she would say, "Hospice, definitely".


I'm sure some of you have dealt with this. What happens if the family says, "yes, hospice" and when the doctor asks Mom she says, "no, I want to live even if it means the hospital". We have all the paperwork , health directives, medical POA, etc. I believe I could live with myself if I chose hospice anyway. But would that be allowed, even with medical POA? My siblings and I are all on the same page, and that page is that we hope she dies peacefully in her sleep. But that hasn't happened yet so we are trying to prepare for the next crisis.


For background: My Mom recently suffered acute onset heart failure https://www.agingcare.com/questions/mom-has-developed-breathing-problems-and-edema-and-will-be-seeing-the-doctor-tomorrow-466525.htm?orderby=oldest


She was hospitalized and after a week they were able to balance her heart and kidney functions and she was discharged with no edema and no breathing problems. A week later bloodwork shows some problem with kidney function so the diuretic will have to be decreased. Plus her blood pressure medication may need to be adjusted because her blood pressure is on the edge of being too low.


We were fortunate enough to find a fantastic adult family home for Mom. In the short time she has been there they have been great. However the hospital stay, then another change to the AFH plus a UTI (caught by the AFH), have really increased her dementia. She is very confused and angry and sad.


Thanks for any thoughts.

A patient ALWAYS has the right to change their mind about end of life care. If your Mom is cognizant enough to say to an MD "No, I want to live EVEN IF it means going back to the hospital" it is likely that her current wishes will be followed. When it comes down to the end, many are afraid to die. It is up to the doctor and the POA to act in a way their believe they should. When your Mom can no longer express her wishes you are allowed to act for her, but in matters of life and death, not until then. A doctor also has a lot of power, given your paperwork, your explanations, and etc regarding at least artificial support such as ventilators, etc. But in end of life a person always has a right to change his or her mind about fighting to live. The best way for MDs to phrase things is "IF YOU DIE do you want us to attempt to bring you back". Often they don't say it this way. Almost anyone will give up ventilator and cpr. But few will give up hospitalization for distress in the end.
Helpful Answer (11)
Reply to AlvaDeer
Report
chdottir May 4, 2021
We will definitely say now to ventilators, resuscitation, and such. That is in her POLST form, which is already doctor signed and considered a medical order. And after talking to her doctors, and we have been very clear about this from the beginning, they are in agreement with us on that.

Whether to go to the hospital at all is the harder thing.
(3)
Report
See 1 more reply
Even tho a person has dementia, she sounds like she has told you her wishes.

She wants to live.

So, you should abide by her wishes.

It's her life, not yours.

Hospice should be called in When your mom is ready, not because you're ready.

People should have the option to say what they want.

My Dad is going to be 97 in a couple weeks. He has Dementia.

Wold I want to live like that? No

BUT, my Dad is living in his own home because that's what he wanted and he has 24 7 Caregivers and yes, all his savings is going to that and there won't be any left for an inheritance.

But, he is getting what he wanted.

He tells me he's going to live to be hundred and I tell him I'm sure he's going to make it. 😇

You might say who would want to live to 97?
Ask someone who is 96. 😇

Prayers
Helpful Answer (8)
Reply to bevthegreat
Report

Hello Ch,

I’m so sorry that you are going through all this :(

You most likely already know this, but, I’m going to tell you anyway, just to maybe give you some reassurance. The reason there has to be a notary present when someone signs the medical POA and directives is so there’s a witness to the fact that they are in their right mind. This legal paperwork can’t be changed by anyone other than the person who signed them. Since your Mom has dementia (so sorry... such a horrible disease), she is no longer legally able to change the forms... they are set in stone. Her wishes, before dementia set in, are what should be followed.

May God bless and keep you and yours.
Helpful Answer (7)
Reply to HereForDad
Report
chdottir May 4, 2021
Thank-you for your supportive comment. We are so glad we got all the paperwork done before this all started!!
(1)
Report
Chdottir, my mom was very clear that she didn't want to be kept alive if death was inevitable. She had DNR/DNI form on her from the moment my dad died (they were 74).

But after a vascular dementia dx at age 90, mom was still technically competent. So when a UTI went septic and she was taken to the ER, gasping for breath with worsening CHF and fluid buildup around her lungs, she was mouthing "do something". Quick thinking POA brother asked if there was something aside from intubation, and there was! A bipap. Mom recovered, diminished, but recovered.

Then her heart stopped working well and she needed a pacemaker. I was distraught at mom's physical and mental condition, but we asked mom what she wanted. She thought about it and said yes, she wanted the pacemaker.

I believe that was mom's last hospital stay. She went back to the NH so diminished and so frail, it looked like another ambulance ride would do her in. We opted for palliative care at that point, meaning that the NH would treat in-house and call us before any ER trip. She lasted another 2 years.

Mom declined slowly from there, fell, declined steeply. We got hospice in and she died 3 days later.

Advice? None. You have to do what you can live with. My mother would have been appalled at her condition, when she would say " shoot me if I get like that". But her older self wanted to live.
Helpful Answer (7)
Reply to BarbBrooklyn
Report

Hi,
I’m so sorry you’re going through this. My dad was diagnosed with lung cancer in the fall. He came home and told my mon he wasn’t going to do chemo or anything - he was just going to golf every day and enjoy what time he had left. He did that for a few months, but then was hospitalized for a seizure...it had metastasized to his brain. We chose for him to have brain surgery to remove it to stop the seizures.
He came out of it a little out of sorts and confused. Eventually diagnosed with dementia. Tells the doctors he wants to do chemo and radiation. He’s gone through hell with chemo and radiation, is under 100lbs and is 6’ tall, etc. This is exactly what he wanted to avoid in the fall when diagnosed, but he’s chosen to do it.
It’s so hard to see your loved one going through awful medical stuff, especially when the person you know them to be prior to the dementia specifically said they didn’t want that kind of life.
But it is thee choice. And it’s heartbreaking to watch. All we can do is try our best to support their choices now even though it’s not the choice of the person they were for so long.
I know I’m not adding much, but I just wanted to let you know you’re not alone.
Helpful Answer (6)
Reply to Melpomene1
Report
chdottir May 4, 2021
Thank-you for your thoughtful answer. Yes, we are in very similar situations.
(2)
Report
Take it one day at a time and one decision at a time. I don't see what else you can do.

For me, with hospital visits, the key question was "what am I expecting them to be able to do?" And if there isn't anything - anything that will improve her physical wellbeing in the moment, that is - don't go. If there is, go.

Speaking generally, not about your mother in particular or about dementia as a complicating factor, the trouble with advance directives is that we make these decisions without having actually experienced the situations in which they may come to apply. For example, we might think "no hospitals, I wouldn't want to live in that state after a stroke" but then - hemiplegic, incontinent, unable to speak - suddenly Not Dying overrides everything else.

My late aunt, who by the grace of God did finally pass in peace, was a doctor and knew very well the predicted course of Chronic Myeloid Leukaemia - that it eventually shifts to the acute stage and will carry you off. She wished to be carried off in private, alone in her apartment; and to that end withheld information from everyone except her GP. By chance her DIL was visiting at the time when things went technicolor and was able to take advice and persuade her to be admitted to hospital; here her distressing symptoms were relieved, and she was able to spend her last day or two calmly and to see her son before she died.

It is fundamental to respect people's wishes, but this has to be balanced with responding to their immediate needs which may include protecting them from fear and physical distress - they have to be allowed a change of heart. I hope you have a doctor you can lean on for help with the impossibly difficult decisions you're having to make?
Helpful Answer (5)
Reply to Countrymouse
Report

I was in a different situation with my mother who was dying of cancer, but I guess you can see the similarities. Her oncologist wanted her to go through months more treatment – chemo and radiotherapy – while her physician (who knew all her health issues) disagreed. I managed to get the doctors to explain to her in my presence just how much longer she could live if the cancer re-treatment worked. She had been hoping for the same type of remission that followed her treatment 10 years earlier. The new answer was just a couple of months longer, after a lot of painful treatment. She turned it down.

Perhaps it could help if you explained to your mother very clearly what it would mean to over-ride her previous end-of-life directions. Tell her about the heavy blows on the chest to restart the heart, the broken ribs and the pain from that. She is quite possibly thinking that she could go back to the way it was ‘before’. Tell her the true news about the future, don’t sugar coat it.

She may not be able to change her mind now – other posters are not all agreeing – but it will help you to feel better about the outcome, if she makes the same personal decision in what is almost certainly in her best interest.
Helpful Answer (4)
Reply to MargaretMcKen
Report
Countrymouse May 5, 2021
Very important point, to ensure that the medical advice is absolutely person-centred, and very good example.

We have a client who is dying of lung cancer which has invaded his trachea. He was offered radiotherapy to reduce the tumour and ease his breathing, 30 mile round trip and treatment five days running. He told me that his oncologist had said "after all, you've got nothing to lose." I haven't seen him since the treatment finished, he was doing well during it and breathing a little more easily; but I could have told the oncologist that this client finds intimate personal care deeply shaming so the oncologist had better be damned sure the client won't become incontinent. That particular client certainly does have something to lose - his personal dignity.
(6)
Report
I like Barb's idea of palliative care, focusing on quality of life without any heroic measures. I think there can be a very thin line between allowing natural death and hurrying it along - there are all sorts of very simple interventions that can hasten death if they aren't taken, everything from providing pureed food or supplementing calories to withholding CPR. One of the reasons I'm very resistant to the idea of people asking for medically assisted death if they should get dementia is that I have seen people who are living somewhat happily after their diagnosis. In my mind it is like imagining a life altering physical challenge like quadriplegia, how many hale and hearty people say they would rather die and yet fight to live after the fact? .
Helpful Answer (4)
Reply to cwillie
Report

I just finished signing the documents for hospice care for my dad who has dementia. He’s 90. I’m curious how old your mother is? It’s interesting to me that no one here has really talked about the damage that can be caused to an elderly body if resuscitation is used. When my dad was in the hospital with Covid they discussed this with us. Once we understood that bones can be broken, and that it’s very extreme and frightening for the patient, we agreed to DNR. Dad recovered, and we waited on hospice care to see if he would benefit from OT and PT, which hospice doesn’t allow. He was unable at the time to walk, due to the weakness caused by the Covid and resistance to exercise due to dementia. He was able to do some of the exercises but it wasn’t enough to really strengthen him to the point where he could walk or even transfer from one seat to another on his own, so after we received feedback from the OT that he really wasn’t improving, we decided to go with hospice. The nurse who did the assessment was very careful about not mentioning hospice, none of us in the family have mentioned hospice to dad either, because we know that he wouldn’t understand, he’d think it would mean we’re “letting him die,” which is a common confusion for many regarding the service. It’s actually a healthy progression if the patient has a DNR, and doesn’t respond to physical therapy. The focus is simply on comfort care for the individual.

If mom improves, she can come off hospice which is also a nice thing to know. The confusion that comes with hospice is that when you’re dealing with someone elderly, it’s not necessarily an immediate end-of-life situation, as it would be for someone younger who has a life threatening illness. Some patients can be on hospice for six months or longer. The nurse who chatted with me yesterday while I signed papers, explained that there are several assessments done throughout the months after hospice is started to assess the patient’s progress. The patient can even stay with hospice for longer than six months if they are not improving.
Helpful Answer (3)
Reply to Louise315
Report

It is easy to say "I don't want anything done" when death is not staring at you straight in the face. Keep that in mind. Things can radically change when imminent death draws closer.

Regardless how bad the Alzheimer's disease, they have their lucid moments. You cannot possibly measure quality of life based on your own level of function. They have their own level and as long as they are comfortable and not suffering they have quality of life.
Helpful Answer (3)
Reply to cetude
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter