When an elderly parent refuses medical care...

[Spryte]

If an elderly parent refuses essential medical care... isn't there a term for this?  I vaguely remember something, but my google fu is lacking today.  So far I've come up with "silent suicide" and "Indirect self-destructive behavior" (as a form of suicide), but both of those terms seem to be older, from the late 80s/early 90s. I am fairly certain there is a newer, more specific term?

 

Either way, are there options to help an elderly parent who refuses care?  The issues:

 

1) Has a blocked artery and has been referred to a cardiologist but refuses to go.  Wants to just "wait and see."  

 

2) Has significant memory issues and has been referred to a specialist but refuses to go.

 

3) Is diabetic, and does take meds, but otherwise eats copious amounts of sugar.  I'd say this person is compliant as far as meds go, but not lifestyle changes.

 

A recent health care advocate has commented that the parent is just waiting to die, and we are aware of that, but only just learned that there are specialist appointments that are being ignored.  I suspect depression, and possibly major personality changes happening due to the memory issues.

 

Is there any recourse?  What can we do to get this person some help?

 

 

[SKL]

I think human dignity demands that elderly adults make their own decisions about their health.  We are all going to die anyway, let people have  a little control over some of the details.

[SKL]

My grandmother was a Christian Scientist and died peacefully in her sleep at age 87.  No harm no foul IMO.

[Spryte]

I think human dignity demands that elderly adults make their own decisions about their health.  We are all going to die anyway, let people have  a little control over some of the details.

 

That was my initial thought, but the issues that are not being addressed are impacting the quality of the other parent's life in a big way.  To the point that there has been talk of separating after 50+ years of marriage.

[SKL]

That was my initial thought, but the issues that are not being addressed are impacting the quality of the other parent's life in a big way.  To the point that there has been talk of separating after 50+ years of marriage.

 

Then frankly, I think the person to address is the individual who is thinking about separating from his/her dying spouse of 50+ years.

 

[prairiewindmomma]

We went through this scenario with elderly relatives, down to the talk of separation.

 

The root cause of the problem was the depression combined with dementia.  If you want to chat via pm as to how it all went down, I can share there...

 

If I could go back in time, I would've encouraged spouse into counseling much earlier.  I *thought* spouse understood how so much of this was depression and dementia (the refusal to change, some other behaviors that popped up), but when it all played out I understand now that spouse really didn't understand the depth of the mental issues. Spouse just thought it was stubborness and a desire to self-destruct regardless of spouses's wishes.  Spouse also should've gotten a home health aide to come in so spouse could have mental health breaks (lunch with friends, opportunities to go to events etc.) as patient started to want to remain homebound.

[Spryte]

Then frankly, I think the person to address is the individual who is thinking about separating from his/her dying spouse of 50+ years.

 

 

Sorry, I'm not being clear.  It's the spouse who is refusing medical care who is throwing out separating as an option.  The spouse that has been (relatively) well is doing his best just to respect the sick spouse's wishes re: no medical care.  

 

The problem is that when Spouse A cannot walk, or care for herself, and ends up falling down and unable to get up... then Spouse B, who is unsteady on his feet and uses a walker due to knee issues, tries to help her.  They have both ended up falling and becoming injured.  More than once.  And Spouse A's reaction to this is an uncharacteristic, "Leave me alone!"  Spouse B is trying to respect that. 

 

There is more, including a desired move to a different assisted living facility - but that facility refused them based on Spouse A's choices, stating that they don't allow new residents to come to their facility just to die.  I'm paraphrasing, but that's the gist, that they won't take the couple because Spouse A is refusing medical treatment. 

[prairiewindmomma]

My first step would be to call patient's primary care physician and have a frank conversation about the personality changes that are occurring and how you think that those are causing depression and an inability to want to get proper medical attention with specialists.  Blocked blood vessels can cause cognitive change as well.

[Spryte]

We went through this scenario with elderly relatives, down to the talk of separation.

 

The root cause of the problem was the depression combined with dementia.  If you want to chat via pm as to how it all went down, I can share there...

 

If I could go back in time, I would've encouraged spouse into counseling much earlier.  I *thought* spouse understood how so much of this was depression and dementia (the refusal to change, some other behaviors that popped up), but when it all played out I understand now that spouse really didn't understand the depth of the mental issues. Spouse just thought it was stubborness and a desire to self-destruct regardless of spouses's wishes.  Spouse also should've gotten a home health aide to come in so spouse could have mental health breaks (lunch with friends, opportunities to go to events etc.) as patient started to want to remain homebound.

 

Thank you for responding.  It helps to hear from someone who's been here.  Counseling is an excellent idea.  I will check into options for the healthier spouse, I'm fairly sure there are options within their church that he would explore.  I think he is struggling with feeling isolated, as the unwell spouse's world is really shrinking, and I think that getting him out more would help.  

 

I'd love to chat more, and get your take on how to help.  

[SKL]

Sorry, I'm not being clear.  It's the spouse who is refusing medical care who is throwing out separating as an option.  The spouse that has been (relatively) well is doing his best just to respect the sick spouse's wishes re: no medical care.  

 

The problem is that when Spouse A cannot walk, or care for herself, and ends up falling down and unable to get up... then Spouse B, who is unsteady on his feet and uses a walker due to knee issues, tries to help her.  They have both ended up falling and becoming injured.  More than once.  And Spouse A's reaction to this is an uncharacteristic, "Leave me alone!"  Spouse B is trying to respect that. 

 

There is more, including a desired move to a different assisted living facility - but that facility refused them based on Spouse A's choices, stating that they don't allow new residents to come to their facility just to die.  I'm paraphrasing, but that's the gist, that they won't take the couple because Spouse A is refusing medical treatment. 

 

OK, I think I understand better now.

 

I think a PP's suggestion to get someone in to help with mobility and other hard stuff would help here.

 

Dementia is hard, but honestly, if you were losing your mental faculties, how long would you want to live like that?  It's terribly scary.  And it's not like there's a magic pill that can make it go away.

[Spryte]

My first step would be to call patient's primary care physician and have a frank conversation about the personality changes that are occurring and how you think that those are causing depression and an inability to want to get proper medical attention with specialists.  Blocked blood vessels can cause cognitive change as well.

 

Ah, I didn't know that about blocked blood vessels, but it makes sense.  Light bulbs are going on here. Thank you.

 

Will a PCP talk to the (obviously adult) child of a patient without permission from the patient?  Just to hear the concerns, not give out info?  Or do we need to somehow get permission from the parent?

[prairiewindmomma]

Ideally you would get permission from the parent, but I've made direct phone calls where I've asked the nurse to have the doctor call me. I just state that I'm aware that patient is a patient of theirs and that I'm in a caregiving position. Here is what is going on, here are my concerns, patient needs help, spouse isn't in a position to manage the challenge, please intervene, etc. The doctor could not admit that patient was their patient, but then called spouse the next day and spouse was able to get needed help.  I later got onto all of the paperwork and started to manage it...but at the beginning, that's how it went down.

[Jean in Newcastle]

I'd talk to the doctor as someone also suggested.  Then I would coax that person into going to the doctor.  (Which is really hard but I've done it using my kids to help because the elderly person wanted to please the grandkids but no one else.)  Once the person was on anti-depressants so much changed.  Now they were able to really make decisions based on what they wanted and it wasn't just the depression talking.  We had to do a lot to help with medications.  Once the person is stable (hopefully) I would push/coax/pull that person into a facility that would be able to give them more care as the dementia increases.  

[Orthodox6]

Ah, I didn't know that about blocked blood vessels, but it makes sense. Light bulbs are going on here. Thank you.

 

Will a PCP talk to the (obviously adult) child of a patient without permission from the patient? Just to hear the concerns, not give out info? Or do we need to somehow get permission from the parent?

Two usual routes. One is to be listed with each doctor visited by a parent as a permissible person to receive information.

 

Other usual route is to have medical power of attorney. If dementia is in place already, you cannot change or establish a MPOA.

 

In any case, you can talk openly with the spouse. You also can provide information to the doctors. (just cannot receive information in return)

[prairiewindmomma]

I would also call the senior center in your area, and see what resources they have. We learned about a TON of options, and we were able to sit down and discuss that there were lots of avenues of help.... As an example, spouse right now doesn't want meals on wheels, and doesn't want me bringing food in, but is willing to pick up a $3 hot dinner from a local grocery store every day. Spouse had been eating take out for all meals, so this is going to be a more nutritious choice. 

[Spryte]

OK, I think I understand better now.

 

I think a PP's suggestion to get someone in to help with mobility and other hard stuff would help here.

 

Dementia is hard, but honestly, if you were losing your mental faculties, how long would you want to live like that?  It's terribly scary.  And it's not like there's a magic pill that can make it go away.

 

I know.  :(  I can't imagine.  It is heartbreaking to see it happening.  I can't imagine living it.  My initial thought is like your first post.  It's when I see how it's impacting her spouse - sometimes in scary, physical ways - that I want to step in and help.  

 

One thing that concerns me is that maybe there is a simple explanation - a UTI, or a vitamin deficiency, a drug interaction, or something I don't know about (I'm not a doc) -  that could be causing some of these issues.  Something that might be addressed fairly easily, and in doing so give her some relief. But she refuses any tests from even the PCP.

 

I grew up in a family that cared for elderly alzheimer's patients, we kept our family at home and brought in live-in nursing staff.  So as a child I saw a lot of alzheimer's patients.  (Am I spelling that wrong?)  ...This particular parent doesn't seem to act the same way, though maybe alzheimer's can present differently in different people.  But it's different enough that I feel like evaluating for other causes might be worthwhile. 

[prairiewindmomma]

Jean's notion about bringing the grandchildren along is an emotional ploy I've used too.....let's go to the doctor's office and then let's go for an icecream/drive in the hills to see the changing leaves/out to xyz event.

[prairiewindmomma]

The reality is that dementia does not kill you right away. Even diabetes and major heart issues took 25 years here to go from impacting life to death with one relative. (Longevity genes--yikes!) There is a whole lotta hell that patient's spouse can go through in that time period.

[Spryte]

Thanks so much for all the responses.  I am going to make some calls today.  

 

One small hitch, I'm not sure how to address: DH's father broke his spouse's confidence to tell DH what was going on.  His mother does not want anyone to know any of this, she wants to just die, basically.  So DH is now feeling powerless, as he doesn't want his father to feel that he can't share with DH, just to have some support.  But at the same time, DH feels that he must get some help/support for both of his parents - not just his mom (who is the ill spouse) but also support for his dad, who needs it.  DH fears that both parents will be angry if he addresses these issues.  And he also fears that his sisters will be upset if he (DH) doesn't share the info with them.  

 

The grandchild idea is excellent.  There is one grandchild in particular, in med school, whose opinion holds a lot of weight.  If DH could get her involved, I'm fairly sure the in-laws would listen.  

 

Thanks for letting me talk this out.  I know it's a sticky topic, and there aren't any right answers.  We just need to find the answers that this particular family can live with, and that DH can live with...

[Spryte]

The reality is that dementia does not kill you right away. Even diabetes and major heart issues took 25 years here to go from impacting life to death with one relative. (Longevity genes--yikes!) There is a whole lotta hell that patient's spouse can go through in that time period.

 

:(

 

So true.

[Wildiris]

In-home care could help a lot. Refusal of care might be forgetting if this person has dementia. In my state, this varies from state to state, I can get a medical power of attorney to make decisions on behalf of a parent. There is also a POLST-Physicians Order for Life Sustaining Treatment- form that a patient fills out with a Dr. which should be on hand at all times. I really sounds like someone needs to step in and help care for these elderly people not only on a daily basis, but overseeing their medical appointments--that means going into the doctor's office and being present at all consultations. 

 

An assisted living facility will most likely reject them because of dementia and would refer them to a memory care unit.

 

A responsible person needs to advocate for these older folks who can no longer advocate for themselves.

 

I've just slogged through six months of parenting a parent suffering from Lewy Body Dementia. If you want help, PM me. I'll be glad to help. 

[Orthodox6]

A side note, if useful. Silverado is a national chain of assisted living centers that accept only Alzheimer's (or other dementia variations, I imagine) and Parkinson's patients. They are NOT nursing homes. My mother with Alzheimer's spent one year at a Silverado before requiring a nursing home instead.

[scootiepie]

In my former career, I worked in a VA hospital and saw lots of this behavior.   I believe there are fear/denial/control issues when you see this, rather than wanting to die - unless there

is depression involved.    Options -

 

You can ask for a competency evaluation.    Someone who is declared incompetent can not make informed decisions.   

 

You can get a health-care power of attorney (what these are actually called may be different according to the state of residence) - so that if one does become incompetent,

a designee can make healthcare decisions.

 

You can get a consult with a primary care provider or social worker - someone neutral to draw up a very specific living will.     They need to hear pointed questions, such as:

Your blood pressure (whatever) is dangerously high.   You are going to have a stroke.   When you do, do you want: to be on life support, have a permanent feeding tube, etc.

 

I know it's hard when they refuse even to be seen by any healthcare provider.     I'm not sure how much of this you can do by phone, but do make the calls.

 

[Χά�ων]

You have options. 

 

1. Call her doctor and explain the situation. Understand that he/she may not be able to give you information but ask that they just listen. Request her to be declared incompetent and needing a guardian to make medical decisions on her behalf. This can be done privately and is not without hassle. 

 

2. Call your states division of elderly care, file a report. Submit all information. The state will open and investigation and if it finds she is incapable of taking care of herself, the state will take custody. Not the best solution, but it will keep you from being the bad guy. 

 

There are more but these two are the least problematic.

[celticmom]

Thanks so much for all the responses.  I am going to make some calls today.  

 

One small hitch, I'm not sure how to address: DH's father broke his spouse's confidence to tell DH what was going on.  His mother does not want anyone to know any of this, she wants to just die, basically.  So DH is now feeling powerless, as he doesn't want his father to feel that he can't share with DH, just to have some support.  But at the same time, DH feels that he must get some help/support for both of his parents - not just his mom (who is the ill spouse) but also support for his dad, who needs it.  DH fears that both parents will be angry if he addresses these issues.  And he also fears that his sisters will be upset if he (DH) doesn't share the info with them.  

 

The grandchild idea is excellent.  There is one grandchild in particular, in med school, whose opinion holds a lot of weight.  If DH could get her involved, I'm fairly sure the in-laws would listen.  

 

Thanks for letting me talk this out.  I know it's a sticky topic, and there aren't any right answers.  We just need to find the answers that this particular family can live with, and that DH can live with...

 

Maybe if the grandchild in med school is close enough geographically they could conveniently need a practice patient and then get the specialists involved.

[SKL]

Is she incompetent or just doesn't want what everyone else wants (a longer life for her)?  Just because she refused care and forgets some things, that doesn't mean she is incompetent.  I would not try to get her declared incompetent unless she really is.

[Danestress]

Obviously I know nothing about the dynamics in your extended family.  But if you have reasonable, normal siblings in law so that there is no really obvious reason why your MIL should keep major medical information from her children, I would suggest that your FIL simply tell her that he IS going to share the information with their children, that she may be the patient but that this is happening to him as well as her, and that he needs the support of his adult children.  There are some decisions that only she can make, presuming she is competent.  But just because she is the one who is sick does not mean ALL the decisions are hers to make.  He also is experiencing a lot of fear and anxiety.  I don't think it would be wrong for him to just tell her that he's telling his children.  She may be mad, but sometimes you just have to let people be mad.

 

I do think that generally people should not feel pressured to share news before they are ready.  When a person is diagnosed with a major condition, they may not want to tell anyone until they have had time to process the information, research treatment options, etc.  It's very individual and I think the desires of the affected party should be respected.  But at a certain point, the patient has to recognize that her spouse is also experiencing this.  If they both agree not to share with family and friends, great.  But if the spouse really feels that need to have a "team" I think that is important too.

[Spryte]

Obviously I know nothing about the dynamics in your extended family.  But if you have reasonable, normal siblings in law so that there is no really obvious reason why your MIL should keep major medical information from her children, I would suggest that your FIL simply tell her that he IS going to share the information with their children, that she may be the patient but that this is happening to him as well as her, and that he needs the support of his adult children.  There are some decisions that only she can make, presuming she is competent.  But just because she is the one who is sick does not mean ALL the decisions are hers to make.  He also is experiencing a lot of fear and anxiety.  I don't think it would be wrong for him to just tell her that he's telling his children.  She may be mad, but sometimes you just have to let people be mad.

 

I do think that generally people should not feel pressured to share news before they are ready.  When a person is diagnosed with a major condition, they may not want to tell anyone until they have had time to process the information, research treatment options, etc.  It's very individual and I think the desires of the affected party should be respected.  But at a certain point, the patient has to recognize that her spouse is also experiencing this.  If they both agree not to share with family and friends, great.  But if the spouse really feels that need to have a "team" I think that is important too.

 

Very well said.  Thank you.

 

I would be hesitant to say that she is incompetent.  I don't think we're to that point, that seems like a last resort.  I think she's very depressed, and forgetful, but I don't think she's incompetent.  I do think she's stubborn.  :)  I think we'll likely start with something like the above - letting her know that her spouse needs the support of family to care for her so he's sharing the info with her (reasonable and well-educated, caring, compassionate adult children), and then we'll explore further options from there.  I'm grateful to see there are ways to go about this in steps... Family support, support for the spouse, calling her doctor to discuss concerns, gentle nudges to get her to the specialists... those all seem like reasonable first steps.  We'll move on from there.  Just getting some support for her spouse will be a big help.

[Orthodox6]

If she is not incompetent, I hope you don't mind my urging you to have both spouses update and/or have drawn up both medical and business power-of-attorney documents. That makes for four separate legal documents. (Individual wills are needed, also.) Don't wait until major illness or dementia make it impossible to create or modify these very necessary documents.

 

My fireman son was telling me the other day that even if a person has signed a "do not resuscitate" document, unless that document is right there on the spot to be shown to the EMT and/or paramedic staff who arrive, by law the medical emergency personnel MUST attempt CPR. So if my mother, in the nursing home and with her signed DNR form in her binder, were to have another stroke or to have a heart attack, unless the staff have the presence of mind to yank that document from the binder and show it to the emergency responders, my mother would be subjected to the rib-crushing extremes of restarting her heart. I find this scary. CPR is not exclusively plain "mouth-to-mouth", my son made clear.

[Spryte]

If she is not incompetent, I hope you don't mind my urging you to have both spouses update and/or have drawn up both medical and business power-of-attorney documents. That makes for four separate legal documents. (Individual wills are needed, also.) Don't wait until major illness or dementia make it impossible to create or modify these very necessary documents.

 

My fireman son was telling me the other day that even if a person has signed a "do not resuscitate" document, unless that document is right there on the spot to be shown to the EMT and/or paramedic staff who arrive, by law the medical emergency personnel MUST attempt CPR. So if my mother, in the nursing home and with her signed DNR form in her binder, were to have another stroke or to have a heart attack, unless the staff have the presence of mind to yank that document from the binder and show it to the emergency responders, my mother would be subjected to the rib-crushing extremes of restarting her heart. I find this scary. CPR is not exclusively plain "mouth-to-mouth", my son made clear.

 

Thank you.  We just reviewed these documents last weekend.  They have it all together in a binder, and I believe it's all in order.  They signed everything a few years ago, and it's all ready to go, if needed.

 

The second part of your post is worrisome though - I hadn't ever thought of that, but yes, unless the binder is right there open the appropriate page, the EMTs would need to do their jobs.  Goodness.  

[Orthodox6]

Thank you. We just reviewed these documents last weekend. They have it all together in a binder, and I believe it's all in order. They signed everything a few years ago, and it's all ready to go, if needed.

 

The second part of your post is worrisome though - I hadn't ever thought of that, but yes, unless the binder is right there open the appropriate page, the EMTs would need to do their jobs. Goodness.

I am sorry to unsettle you. I can't get the concern out of my mind now that he has told us.

[StephanieZ]

If an elderly parent refuses essential medical care... isn't there a term for this?  I vaguely remember something, but my google fu is lacking today.  So far I've come up with "silent suicide" and "Indirect self-destructive behavior" (as a form of suicide), but both of those terms seem to be older, from the late 80s/early 90s. I am fairly certain there is a newer, more specific term?

 

Either way, are there options to help an elderly parent who refuses care?  The issues:

 

1) Has a blocked artery and has been referred to a cardiologist but refuses to go.  Wants to just "wait and see."  

 

2) Has significant memory issues and has been referred to a specialist but refuses to go.

 

3) Is diabetic, and does take meds, but otherwise eats copious amounts of sugar.  I'd say this person is compliant as far as meds go, but not lifestyle changes.

 

A recent health care advocate has commented that the parent is just waiting to die, and we are aware of that, but only just learned that there are specialist appointments that are being ignored.  I suspect depression, and possibly major personality changes happening due to the memory issues.

 

Is there any recourse?  What can we do to get this person some help?

 

 

If this is the same person with all 3 conditions, I'd leave him/her the hell alone. He/she likely has dementia, which is nearly always progressive and fatal. Additional medical procedures and treatment is generally not only a waste of time, but also can cause progression of dementia. If anything, I'd go along to the next general practitioner appointment to get a feel for the status of the dementia diagnosis. Ask if they have screened for treatable causes for the dementia (depression is one), and follow up to try to get any treatable causes treated. (Thyroid condition, vitamin deficiencies, depression . . . all diagnosed based on blood test and simple office screening.)

 

As the caregiver and POA for a parent with dementia . . . I'd just encourage you to make the most of the time you have left with your loved one, LOVE them, enjoy time together, encourage them to LIVE, and step off the crazy-train of medical interventions.

 

Personally, knowing what I know about the course of Alzheimer's, if I had it (or a similar progressive dementia), I'm immediately cease treating heart conditions and any other conditions that might kill me. Dying of Alzheimer's is NOT a good way to go, so a secondary ailment can be a blessing. 

 

I am sorry you are dealing with this. Educate yourself on dementia and try to cherish what LIFE you have left together, without being consumed by the medical aspects.

[StephanieZ]

ps. DNRs and/or POST forms are supposed to be 1) always with the person on their person and 2) posted on their refrigerator. Those are the places EMTs are supposed to look. 

[Orthodox6]

If this is the same person with all 3 conditions, I'd leave him/her the hell alone. He/she likely has dementia, which is nearly always progressive and fatal. Additional medical procedures and treatment is generally not only a waste of time, but also can cause progression of dementia. If anything, I'd go along to the next general practitioner appointment to get a feel for the status of the dementia diagnosis. Ask if they have screened for treatable causes for the dementia (depression is one), and follow up to try to get any treatable causes treated. (Thyroid condition, vitamin deficiencies, depression . . . all diagnosed based on blood test and simple office screening.)

 

As the caregiver and POA for a parent with dementia . . . I'd just encourage you to make the most of the time you have left with your loved one, LOVE them, enjoy time together, encourage them to LIVE, and step off the crazy-train of medical interventions.

 

Personally, knowing what I know about the course of Alzheimer's, if I had it (or a similar progressive dementia), I'm immediately cease treating heart conditions and any other conditions that might kill me. Dying of Alzheimer's is NOT a good way to go, so a secondary ailment can be a blessing. 

 

I am sorry you are dealing with this. Educate yourself on dementia and try to cherish what LIFE you have left together, without being consumed by the medical aspects.

 

I am trying to place myself within your mindset.  There are people who would agree with you.  I cannot.

 

Alzheimer's does not have effective treatment and does not have a cure.  The blocked artery and the diabetes can be treated and should be treated for the physical comfort of the patient with Alzheimer's.  I do not regard such treatment as "crazy-train".  I never, ever would forgive myself were I to abandon my beloved mother, who has advanced Alzheimers, and has had the disease for sixteen years at least.  Unless I greatly misunderstood your post (which is possible that I did), your recommendation would be to abandon my mother to even greater suffering.  When she had a hemorrhagic stroke over a year ago, I should have forbidden the assisted living center from sending her to the hospital.

 

No way.

 

[Orthodox6]

ps. DNRs and/or POST forms are supposed to be 1) always with the person on their person and 2) posted on their refrigerator. Those are the places EMTs are supposed to look. 

 

That would make good sense.  It is not, however, the practice in nursing homes.

[hornblower]

ps. DNRs and/or POST forms are supposed to be 1) always with the person on their person and 2) posted on their refrigerator. Those are the places EMTs are supposed to look. 

 

you can also get DNR bracelets, just like a medicalert bracelet. It doesn't replace the documents but alerts first responders to look for the forms.

[Orthodox6]

you can also get DNR bracelets, just like a medicalert bracelet. It doesn't replace the documents but alerts first responders to look for the forms.

 

Thank you tremendously for this information.  I shall follow up for both of my parents.  If you happen to know a reputable source and have time to post it, thank you in advance.

[Um_2_4]

I know my uncle in a nursing home had a large red DNR sign above his bed. Not sure if that could be done in most nursing homes??? (It's been some years since I was at one of those facilities. The one my uncle was in looked more like a hospital than a condo/apt.)

[hornblower]

Thank you tremendously for this information. I shall follow up for both of my parents. If you happen to know a reputable source and have time to post it, thank you in advance.

Check this as it varies by state (& I'm in canada so not much help)

 

http://www.americanmedical-id.com/extras/dnr.php

[Orthodox6]

Hornblower, thank you!  I'll read more after dinner.

[Danestress]

I am trying to place myself within your mindset. There are people who would agree with you. I cannot.

 

Alzheimer's does not have effective treatment and does not have a cure. The blocked artery and the diabetes can be treated and should be treated for the physical comfort of the patient with Alzheimer's. I do not regard such treatment as "crazy-train". I never, ever would forgive myself were I to abandon my beloved mother, who has advanced Alzheimers, and has had the disease for sixteen years at least. Unless I greatly misunderstood your post (which is possible that I did), your recommendation would be to abandon my mother to even greater suffering.

 

I also cared for a parent with Alzheimer's, and I understand what you are trying to say. But this conversation includes discussion of the *patient's* desires for treatment (or not) and a number of people suggesting a guardianship proceeding to strip the parent of rights to make choices about her own health.

 

It's complicated. Choosing 'no treatment' in keeping with the patient's stated desires is not how abandonment has looked to me. To me, abandonment is failure to be present and to suffer alongside a loved one, or to refuse to advocate for him or her.

[Orthodox6]

I also cared for a parent with Alzheimer's, and I understand what you are trying to say. But this conversation includes discussion of the *patient's* desires for treatment (or not) and a number of people suggesting a guardianship proceeding to strip the parent of rights to make choices about her own health.

 

It's complicated. Choosing 'no treatment' in keeping with the patient's stated desires is not how abandonment has looked to me. To me, abandonment is failure to be present and to suffer alongside a loved one, or to refuse to advocate for him or her.

I am comfortable with what you write a on respecting a patient's wishes stated while mentally competent. That, however, is not what I gained as the meaning of the other poster. (Stephanie, I think, but cannot check back when using the cell phone. )

[datgh]

My MIL a couple of years ago was acting very similar to yours.  We finally had to force her out of her house because of her dementia and other health issues.  It wasn't safe for her to be there by herself anymore. It wasn't pretty and it definitely wasn't easy. My SIL switched MIL over to her doctor (we always thought MIL's was a bit of a quack.) It took a good year but once all MIL's medications and conditions were addressed you wouldn't know she was the same person.  A lot of her problems especially the dementia and depression were due to the wrong medications. There were also some heart issues which have been addressed via medication.  Fast forward two years and she is happier than she has been in years and is really enjoying life. She still exhibits some dementia symptoms but they are much improved from what they were.

 

Don't give up on your MIL.  I think there is still hope. 

[Serenade]

I think human dignity demands that elderly adults make their own decisions about their health.  We are all going to die anyway, let people have  a little control over some of the details.

 

 

Adding an emphatic yes.

[Joanne]

Sorry, I'm not being clear.  It's the spouse who is refusing medical care who is throwing out separating as an option.  The spouse that has been (relatively) well is doing his best just to respect the sick spouse's wishes re: no medical care.  

 

The problem is that when Spouse A cannot walk, or care for herself, and ends up falling down and unable to get up... then Spouse B, who is unsteady on his feet and uses a walker due to knee issues, tries to help her.  They have both ended up falling and becoming injured.  More than once.  And Spouse A's reaction to this is an uncharacteristic, "Leave me alone!"  Spouse B is trying to respect that. 

 

There is more, including a desired move to a different assisted living facility - but that facility refused them based on Spouse A's choices, stating that they don't allow new residents to come to their facility just to die.  I'm paraphrasing, but that's the gist, that they won't take the couple because Spouse A is refusing medical treatment. 

 

Use the facility's resources - all of them. I was a therapist in a nursing home (third party, hired by the nursing home). We worked cases like this to relieve depression, increase compliance (meds, hygiene), help client want to improve their quality of life. It's very possible that your facility has a Social Worker that can help you navigate to access professional services. That would bring in trained persons who are unrelated and not tied up in the issue emotionally.

[Spryte]

Use the facility's resources - all of them. I was a therapist in a nursing home (third party, hired by the nursing home). We worked cases like this to relieve depression, increase compliance (meds, hygiene), help client want to improve their quality of life. It's very possible that your facility has a Social Worker that can help you navigate to access professional services. That would bring in trained persons who are unrelated and not tied up in the issue emotionally.

 

Thank you.  I will suggest this to DH, and make some calls tomorrow.  MIL has been refusing help from the facility lately, and insisting that FIL not call for help when he needs it (both for himself, and for her). Finding out what resources they offer sounds like an excellent step, I'm sure they have more services they can offer. 

[brehon]

you can also get DNR bracelets, just like a medicalert bracelet. It doesn't replace the documents but alerts first responders to look for the forms.

O6, your parents are in TX, right? In TX a DNR device (bracelet, etc) is considered a valid DNR. So, the paramedics would not start CPR if the device were on your parents even if they didn't see the paper.

 

You are absolutely right to be worried about where the DNRs are in nursing homes. I canNOT tell you how many times my FFs, my partner, and I have begun resuscitation efforts only for some nurse (or, more likely, aide of some sort) to come rushing in waving the DNR some 10 minutes later. <sigh> I'd recommend both a device AND placing a copy of the DNR in a page protector and taping it to the closet door, above the bed, or other similar spot.

[Reefgazer]

My dad can be stubborn like this.  I've had to come to grips with the fact that he is a competent adult and allowed to make his own decisions and reap his own consequences.  Tough to watch; I'm sorry.

 

ETA:  I just read further down where the patient's choices are impacting his marriage and other family members.  I've also seen that happen in my own family, but as difficult as it is to watch, it still doesn't negate the right of the patient to make their own choices, and everyone who has ever married knows that a spouse's actions will impact them and when they got married they agreed to that.  It might help if the healthy, put-upon spouse had counseling to cope with this stage of life.

If an elderly parent refuses essential medical care... isn't there a term for this?  I vaguely remember something, but my google fu is lacking today.  So far I've come up with "silent suicide" and "Indirect self-destructive behavior" (as a form of suicide), but both of those terms seem to be older, from the late 80s/early 90s. I am fairly certain there is a newer, more specific term?

 

Either way, are there options to help an elderly parent who refuses care?  The issues:

 

1) Has a blocked artery and has been referred to a cardiologist but refuses to go.  Wants to just "wait and see."  

 

2) Has significant memory issues and has been referred to a specialist but refuses to go.

 

3) Is diabetic, and does take meds, but otherwise eats copious amounts of sugar.  I'd say this person is compliant as far as meds go, but not lifestyle changes.

 

A recent health care advocate has commented that the parent is just waiting to die, and we are aware of that, but only just learned that there are specialist appointments that are being ignored.  I suspect depression, and possibly major personality changes happening due to the memory issues.

 

Is there any recourse?  What can we do to get this person some help?

 

[Reefgazer]

I'm not sure this is allowable because of HIPPA.  When my dad got a lung infection a decade ago, he had to sign a waiver for the doctor to tell me anything or discuss anything with me.  So this might not be an option.

My first step would be to call patient's primary care physician and have a frank conversation about the personality changes that are occurring and how you think that those are causing depression and an inability to want to get proper medical attention with specialists.  Blocked blood vessels can cause cognitive change as well.

 

[Reefgazer]

Especially because of the bolded, your DH might need to bite the bullet, step back, and let his parents figure out their own marriage and their own medical decisions.  I can't imagine that forcing a competency hearing to get medical power of attorney would sit well with the ill spouse (even if it might accomplish your DH's goals of regular medical care for his mom), and in fact has a good chance of leading to an estrangement for the rest of the patient's life.  Is it really worth it to your DH to have a parent who is alive and medicated, but bitter, angry, powerless, and unhappy in her final days?  And probably not on speaking terms with whichever person had her declared incompetent?

Thanks so much for all the responses.  I am going to make some calls today.  

 

One small hitch, I'm not sure how to address: DH's father broke his spouse's confidence to tell DH what was going on.  His mother does not want anyone to know any of this, she wants to just die, basically.  So DH is now feeling powerless, as he doesn't want his father to feel that he can't share with DH, just to have some support.  But at the same time, DH feels that he must get some help/support for both of his parents - not just his mom (who is the ill spouse) but also support for his dad, who needs it.  DH fears that both parents will be angry if he addresses these issues.  And he also fears that his sisters will be upset if he (DH) doesn't share the info with them.  

 

The grandchild idea is excellent.  There is one grandchild in particular, in med school, whose opinion holds a lot of weight.  If DH could get her involved, I'm fairly sure the in-laws would listen.  

 

Thanks for letting me talk this out.  I know it's a sticky topic, and there aren't any right answers.  We just need to find the answers that this particular family can live with, and that DH can live with...