When an elderly parent refuses medical care...

[Jean in Newcastle]

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.

HIPPA does not keep the doctor from listening to what you tell him about the patient.  He just can't tell you what he thinks of what you tell him!  

[StephanieZ]

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.

 

 

I was responding to the OP's query as to how to respect the patient's stated wishes not to be treated. I was also stating my own personal wishes for my *own* care should I develop dementia, and stating that I know some things about it since I am the caregiver for a parent with ALZ.

 

My mom lives with us now, and I am totally devoted to caring for her just as I do and would do for my kids and spouse. She has it made in the shade, actually, and could not have a better situation considering she has a terminal disease that is killing her bit by bit. Fortunately for us, she made her wishes clear and legally binding well before she developed this ailment. We all do and will respect her wishes. It is my belief that palliative care is often the humane option when someone has a terminal illness. Pursuing diagnosis and treatment of every possible ailment is not necessarily in the patient's best interest unless your only objective is to be physically alive for the maximum number of days (and even then, data shows this is often counter-productive as complications and side-effects can often be more damaging than the procedure is helpful). LIVING is more important that surviving, IMHO. My mom is spending some weeks at the beach with my family this month. My brother, her only other child, is here, too, this week. We spent the day kayaking down a spring fed river and playing with a friendly manatee, watching all her grandchildren and her son leap from a platform into the 100 ft deep spring, ate an awesome BBQ dinner, watched a bright red moon rise . . . This week she's also gone on many 10 mile long bike rides on the brand new tandem bike her son bought her just for this purpose, so she can keep riding bikes for many more months or years, even though her ability to judge traffic and directions is already limited. . .  now we can steer for her . . . We are finding every way possible to make the most of the days Mom has left, and we spare no expense or effort to maximize her LIFE.

 

Every doctor appointment is a stressor. Procedures can and have thrown her into serious decline for days and weeks. I know plenty of ALZ patients who have permanently declined following rather routine procedures. I know the drill. If we were still pursing those horrible annual colonoscopies, mammograms, biopsies, dozens of skin-biopsies, etc, etc, that she had done in recent years . . . her life would be consumed by THAT, not with LIVING.

 

Mom sees excellent doctors that monitor her overall health and conditions and she takes every medication, vitamin, and therapy that helps her. She takes art lessons and horse back riding lessons weekly . . . goes to plays and shows and art exhibits and church and lunch with friends and travels to see her son . . . We have not abandoned her. I am by her side, fighting the good fight, and cherishing her LIVING. Instead of spending much of her days going to doctors, prepping for colonoscopies, having her boobs squooshed in mammography machines, explaining why things hurt, and why she is being poked and prodded, and worrying about all those painful things . . . Instead, she goes for bike rides, plants flowers, helps make dinner, picks paint colors for the new wing we're putting on our house for her, packs for trips, walks, goes to church  . . . I am 100% confident that Mom is having a fantastic life with us. She is happy, her doctors love the care she is getting, she is strong and fit, and she is getting every possible positive therapy and support for her well being.

 

Nonetheless, ALZ kills her bit by bit each day. It is what it is. Something gets all of us, even the strongest, bravest, most loving, most generous, best of us, as my mom is. I have no desire to have her suffer for months or years bedridden, knowing nothing and noone, unable to communicate, and starving to death. THAT IS THE END STAGE OF THIS DISEASE. Yelling intended; I am entitled, as I live with this as you do, so that fear is ever present in my mind, and, truly, that fear is the worst of this disease for me, as it is the one thing I can't protect her from, and if it is to be, then it will be, no matter my wishes or her wishes on the matter. I know that state of existence is not in any way something that Mom wanted, and she made that legally and morally clear. So, in my opinion, if another less agony-inducing cause of death presented itself at some stage of this illness, it is not unreasonable for someone to choose not to treat that ailment. Given the OP's original post, I guessed that the OP's loved one saw it like I saw it, and had decided for his or herself to take an early exit. I, personally, would likely do the same for *myself*. 

 

To each her own, but I firmly believe that "stepping off the crazy train" of aggressive treatment of every possible ailment is not only a valid option, but is THE humane choice, and I believe that the data support that focusing on palliative care that can improve the quality of life is more beneficial to ALZ patients than focusing on curative/life extending care. All the doctors Mom sees have been fully supportive of transitioning to focusing only on medical care that improves quality of life and promotes comfort, while avoiding painful or stressful procedures that are not going to be of benefit. 

 

I also firmly believe that it is our duty to respect the wishes of the patient, and unless one has reason to believe that the patient's current stated wishes are not representative of their longer held preferences (as in the case of depression, vitamin deficiencies, etc., as I clearly encouraged the OP to get clearly ruled in/out and treated) . ..  then I think it is immoral to turn a person's wishes at this stage of life into a battle ground. This is a time to respect the person's wishes unless for some reason you don't trust they are truly held ones, in which case you need to intervene to figure that out. As I clearly stated.

[Jean in Newcastle]

???  But the OP wasn't talking about aggressive treatment.  The OP is asking about a person who has not been (as far as I can see ) evaluated for some treatable things that could be making her look like she has worse dementia than she possibly even has.  Depression is one of those things.  A UTI is one of those things.  Medications can be one of those things.  

[StephanieZ]

???  But the OP wasn't talking about aggressive treatment.  The OP is asking about a person who has not been (as far as I can see ) evaluated for some treatable things that could be making her look like she has worse dementia than she possibly even has.  Depression is one of those things.  A UTI is one of those things.  Medications can be one of those things.  

Maybe you should re-read my original post?

 

I clearly stated that getting in to a DR to get evaluated for depression, vitamin deficiencies, etc, needed to be done to enable a clear understanding of the root cause of the dementia. . . . BEFORE making decisions on other ailments. I know all about UTIs and dementia, and have had mom checked multiple times and treated as needed, and have her on all the fancy herbal and medicinal options to prevent them (including a estrogen supplement that cost $700 when I filled it last month) . . . I know all that crap. 

 

The three ailments she mentioned were cardiac, dementia, and diabetes. She said the diabetes is treated but that the loved one cheats on the diet. I know nothing about cardiac disease. It's not something that runs in my family. I think cardiac=heart attack=dead However, if it causes pain to not to get it treated, then, sure it needs to be discussed. I would not want to leave pain untreated. But, if treatment HURTS or procedures HURT or tests STRESS . . . those things are really bad, and really, really bad for dementia. 

 

My responses to OP were based on the PATIENT'S STATED WISHES to not treat. I stick with my point that the child/loved one needs to make sure the dementia is fully evaluated and the root causes investigated and treatment options discussed. This is something that the patient can't do solo due to the nature of the disease. Not ALL dementia is terminal, and some is even treatable or curable. I wouldn't want anyone to give up before finding out if they were one of the lucky ones whose dementia was caused by a simple thyroid or vitamin issue . .. or maybe even just would benefit from a nice anti-depressant . . . But, most dementia is not that easy to treat. So, personally, I don't think it is an unreasonable idea for a patient to choose to avoid excessive medical intervention if they have a terminal disease. The OP had not indicated that the dementia was advanced, and had not even used the term dementia I don't think . .. so I am assuming that the patient in question is still fairly early in their dementia, and so, as such, most likely legally and morally still competent to make their own CHOICE about medical care. 

[Jean in Newcastle]

I'm more interested in the OP and her desire to get her loved one in for evaluation.  She said that memory issues are an issue - not that there was a specific diagnosis of dementia.  She also said that she suspects that depression is the reason why her loved one may not want to do anything.  I understand letting an elderly adult make decisions of care.  My father just died two months ago because he refused a pacemaker.  I supported his decision which was well thought out and made while he was cognizant of all the issues.  I'm also dealing with my MIL who has diagnosed dementia and diabetes.  There is a dance there to provide at least minimum care because optimum care is not possible at the moment.  I wish it was, but in order to do that we would have to drag MIL and FIL into court to rule them incompetent and to override their wishes.  We do not choose to do that because the damage that would do would override all potential positives.  I hope that the OP can get her loved one into a better situation before things deteriorate to the place where it is with my ILs.  We are helping them but it could be a lot better.  

[Halftime Hope]

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.

 

You didn't mention which vessels are blocked, but it is fairly common to have blocked vessels in a heart and also blocked carotids.  From personal familial experience, the blocked carotids can cause a huge amount of damage in the brain--which can show up as dementia--because the brain isn't getting enough oxygen.

 

Recovery after surgery to unblock a carotid is not a major deal.

 

[Spryte]

I am on a mobile, so this will be a quick drive by post, sorry.

 

Yes, the concern here is that nothing has been firmly diagnosed. She won't get checked for a UTI, or any other treatable causes of dementia. She won't go to the doctor at all. And when she last did, she refused to let her husband attend with her. Which is her right, of course. But she cannot understand her doctor (her own words), so that's an issue unfortunately. We know a bit, which I've already posted, but that's the extent of our knowledge.

 

 

FIL remembers now that her last blocked artery caused memory issues, so he suspects that may be the cause of the memory issues.

 

Eta: she is in her early seventies, so not terribly old. :(

[Alicia64]

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.

 

It depends on possible dementia. My mom and her sister let my grandma "just be" and my poor gram -- while driving -- smashed into a moving car. Her elderly sister was the passenger and died. They had been best friends their entire lives. Nobody in the other car died thank goodness.

 

There had been subtle signs like leaving the stove on and leaving the house, giving money away to people etc.

 

The other thing about possible dementia is that they get paranoid that doctors/others are out to get their money. Or they convince themselves that they're fine etc.

 

Alley

[Spryte]

StephanieZ, I appreciate your perspective on this.  You're doing a great job for your mom.  I know this is a topic that is emotional and difficult for everyone.  Thanks for responding with a different take.  It's helpful.

 

I think the below is our issue at the moment.  Nothing has been fully evaluated, and no tests have been done to determine whether there is a treatable reason for the memory/personality change issues.  It would be wonderful to find that there are treatable causes for that.  If there are not treatable causes, then that's a different ballgame. Right now, MIL just won't discuss anything with her doc.  The last time FIL was allowed to attend, he mentioned the memory/personality issues to the doc - and they got the referral to the dementia specialist and the cardiologist for the blocked vessel, but MIL refuses to go.  That was probably a year ago, and MIL will not allow FIL to attend with her again, if she goes at all.  Part of the reason she *won't* go is that she says she can't understand her doc's accent, but she won't change docs either.  [sigh]  

 

On the depression front: it's concerning to me that MIL has given away everything of value in her home, is a bit compulsive about making sure her end of life plans are in order (we have gone over and over everything, for years), and just this past weekend checked out her newly installed and engraved tombstone.  She doesn't want to enjoy life right now, she's not enjoying what she has at all.  :(

 

They live in an assisted living facility but she will not allow FIL to ask for help of any kind.  He is trying hard to respect her wishes, but it is frightening when we hear stories of both of them falling because he is trying to help her (he uses a walker, we're not talking about a strong, healthy man here).  

 

Thinking this through has been helpful for me, because in large part I'm seeing that perhaps we need most to focus on getting FIL the support *he* needs at this time.  

 

Thanks, everyone, for talking this through with me. 

 

 

 

 

My responses to OP were based on the PATIENT'S STATED WISHES to not treat. I stick with my point that the child/loved one needs to make sure the dementia is fully evaluated and the root causes investigated and treatment options discussed. This is something that the patient can't do solo due to the nature of the disease. Not ALL dementia is terminal, and some is even treatable or curable. I wouldn't want anyone to give up before finding out if they were one of the lucky ones whose dementia was caused by a simple thyroid or vitamin issue . .. or maybe even just would benefit from a nice anti-depressant . . . But, most dementia is not that easy to treat. So, personally, I don't think it is an unreasonable idea for a patient to choose to avoid excessive medical intervention if they have a terminal disease. The OP had not indicated that the dementia was advanced, and had not even used the term dementia I don't think . .. so I am assuming that the patient in question is still fairly early in their dementia, and so, as such, most likely legally and morally still competent to make their own CHOICE about medical care. 

 

 

[Spryte]

It depends on possible dementia. My mom and her sister let my grandma "just be" and my poor gram -- while driving -- smashed into a moving car. Her elderly sister was the passenger and died. They had been best friends their entire lives. Nobody in the other car died thank goodness.

 

There had been subtle signs like leaving the stove on and leaving the house, giving money away to people etc.

 

The other thing about possible dementia is that they get paranoid that doctors/others are out to get their money. Or they convince themselves that they're fine etc.

 

Alley

 

Alley, I'm so sorry about your grandma and her sister.  That is so heartbreaking.  :(

[StephanieZ]

StephanieZ, I appreciate your perspective on this.  You're doing a great job for your mom.  I know this is a topic that is emotional and difficult for everyone.  Thanks for responding with a different take.  It's helpful.

 

I think the below is our issue at the moment.  Nothing has been fully evaluated, and no tests have been done to determine whether there is a treatable reason for the memory/personality change issues.  It would be wonderful to find that there are treatable causes for that.  If there are not treatable causes, then that's a different ballgame. Right now, MIL just won't discuss anything with her doc.  The last time FIL was allowed to attend, he mentioned the memory/personality issues to the doc - and they got the referral to the dementia specialist and the cardiologist for the blocked vessel, but MIL refuses to go.  That was probably a year ago, and MIL will not allow FIL to attend with her again, if she goes at all.  Part of the reason she *won't* go is that she says she can't understand her doc's accent, but she won't change docs either.  [sigh]  

 

On the depression front: it's concerning to me that MIL has given away everything of value in her home, is a bit compulsive about making sure her end of life plans are in order (we have gone over and over everything, for years), and just this past weekend checked out her newly installed and engraved tombstone.  She doesn't want to enjoy life right now, she's not enjoying what she has at all.   :(

 

They live in an assisted living facility but she will not allow FIL to ask for help of any kind.  He is trying hard to respect her wishes, but it is frightening when we hear stories of both of them falling because he is trying to help her (he uses a walker, we're not talking about a strong, healthy man here).  

 

Thinking this through has been helpful for me, because in large part I'm seeing that perhaps we need most to focus on getting FIL the support *he* needs at this time.  

 

Thanks, everyone, for talking this through with me. 

 

You're entirely welcome. I am glad if I have been of any help. These issues are brutal, and I think it could be even harder in some ways to have the spouse alive and involved, as then you have to balance each of their needs. I feel for you. 

 

One inevitable reality is that ultimately, someone has to step forward and take charge in the case of dementia. It is *never* going to be easy and the patient is *never* going to accept help. No day arrives when she will suddenly accept your help. It won't EVER happen. It is simply an ugly reality that as the caregiver, you have to plow in and face the music, receive the anger, persevere, and do what has to be done.

 

In your situation, I agree that it sounds like the imperative first priority is to get FIL the help and support he needs. Back him up and encourage him to assert himself and get the intervention and assistance they both need. Sit and talk with him. Be willing to be the "bad guy" to take pressure off him. In my case, once I finally asserted authority, it soon became an easier situation to manage. It was a heavy price to pay and a hard transition to make . . . but me taking charge was better accepted than I had feared, and I was immediately able to get Mom's cooperation, even if it was reluctant and indulgent at first. It is entirely possible to take charge gently but firmly, showing respect and support . . . but, in the end, you have to  insist at some point rather than continue to try to persuade. Persuasion doesn't work when the person's "thinking" is impaired. They can't reason if their "reasoner" is broken, and, that is what has happened in dementia. 

 

If your family can help your FIL get in close contact with a social worker, geriatric care manager, geriatric clinical therapist of some sort, etc, along with constant practical and emotional support, then I think that is the best course of action to get through this difficult time. 

 

Also, be aware that it is VERY common if not universal to need to resort to trickery or lies to get the dementia sufferer the support or help she needs. People routinely explain that the paid caregiver is just a friend . . . or "is having a hard time and needs the job" . . . Or lie to the patient to get them to the doctor, etc. When I had to move Mom suddenly last winter, I had resolved myself to simply putting her in the car to "go out to lunch" and driving her the 200 miles to my house . . . if I had to . . . It took me 4 days and much negotiation to cajole her into willingly coming with me . . . and many weeks before she understood and accepted that she wasn't just visiting . . . but, once I made up my mind that it *was* happening, the negotiation and transition actually went fairly smoothly, because I had emotionally made that horrible hurdle into actually being the "boss" of my wonderful mother. It sucked, but it was OK in the end, and it is all so much better now. Accepting the potential necessity of telling white lies to Mom in order to keep her safe and well was helpful to me. (I do not routinely lie to her, and I do not lie to her about her condition . . . We haven't had to do that . . . but I had to emotionally make a shift to recognizing that her wellbeing was more important than facts . . .)

 

My bet is dollars to donuts that MIL has ALZ or a related dementia, and if that is the case, then, ultimately (and sooner rather than later), you are all going to have to face the music and take charge, and deal with the inevitable discomfort and resistance. It is what it is. Once someone steps in and takes charge, it really does get better in many ways, and certainly, in your case, with your vulnerable FIL, someone MUST do that sooner rather than later to protect and help HIM, as there is more at stake than your MIL's wellbeing, since her wellbeing is so intertwined with his.

 

((((hugs)))) and best wishes to you all. 

[Alicia64]

Alley, I'm so sorry about your grandma and her sister.  That is so heartbreaking.   :(

 

Thanks. It was so sad. My poor Gram whom I loved more than anybody.

 

Part of dementia is the cantankerous, "don't tell me what to do." But it's sort of like dealing w/ a four year old sometimes you have to intervene.

 

My super clean grandma -- in a good way, she wasn't OCD -- wouldn't let me wash her clothes once when she came to visit. This was so unlike her. So I literally crept into her room late at night and slowly pulled her clothes out, washed them and got them back in before she woke up.

 

I miss her so much.

 

Alley