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I have discovered that my 69 year old father has been lying about his health because he doesn't want to worry or burden our family. He's told told two people that he'd rather die than to have the amputation and insists that his alternative medicine practitioners will be able to save the leg.


He's staying with someone who offered him a guest room a couple nights a week so he doesn't have to drive from this clinic to his home every day, about 40 minutes. The clinic performed surgery on him over the weekend but today his blood sugars went so low he went into diabetic shock and an ambulance took him to the hospital.


To make matters worse he's leaned so heavily on his roommate that he'd effectively moved out over the weekend over the row. From what I understand his roommate was screaming at him when he showed up.


I'm not in a financial place to pay for caregiving for him and I doubt seriously that his sister is much better off than myself. I have these people who allowed him to sleep in their guest room asking me what I'm going to do for him. It doesn't sound like he can go home. He can't stay with these people. I live far away from his desired treatment facility.


If he had his own place I could try to stay with him but I can't do that long term without losing my job. If I could bring him back to my home it'd probably destroy my relationship in addition to him going septic or having to have the amputation.


I'm not prepared for this. The people who've let him into their home are suggesting the best thing is that the hospital admits him and provides him the care he needs for a couple days so that he regains some strength and continues on his treatment to recover.


Obviously that'd be wonderful except I know I need to put something into place in the event that's not what happens. Usually I'd have guidance from a medical worker as to what my options are but he's shunned his doctors to the point that they've dismissed him as a patient.


I'm going this pretty much alone, except for his sister but we both live several hours from him. I may be in worse financial situation than she is, I don't know. I'm going to be emailing my bankruptcy lawyer to see if this is a situation the court recognizes and may approve a new budget. I'm turning to this forum for guidance and advice.


I recognize my father is an adult man and is definitely of sound mind, even if I absolutely disagree with how he's managing his health, and therefore I feel like I can't force him to comply with the doctors. Further I don't even know if the doctors may be wrong or if he's let this go so long there's no options at this point.


Thank anyone for their time to suggest what I could do.

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Is your father currently in the hospital? Call the social work department at the hospital and explain your dad's situation to them.
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What a very difficult situation. If your father is of sound mind, the chances are that neither you, the hospital nor any doctor can force him into any treatment, let alone amputation of a leg.. You would probably not get guardianship, even if you were prepared to take it on, and there may be no state interventions that would be available. If you think about the well-publicised prosecutions of parents who object to blood transfusions for a child, you can see the limitations of forcing any treatment onto an adult of sound mind.

You may have to accept that he does go to his home, does not accept treatment, and dies the next time he has a medical emergency. The advice to talk to the hospital social worker is well worth following up. You are going to need help yourself to cope with this, so it should have a double function.

You are not responsible for solving this problem, no matter how difficult it is to accept. Look after your heart and your conscience by making sure that you have done what you can, and then give the problem to God.
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zeta12 Nov 2018
Thank you, I feel like everyone is telling me what I should do next. I feel like a wreck for it. I'm hoping he's going to become more coherent and be able to direct me on his actual wishes or any contingency plan he has. Until then the social resources seem to be helping me out trying to figure out options in the meantime.

My father's generation of our family have been the ones more connected to god than me and I'm glad his sister is there to provide that kind of support for the both of us. Thank you.
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I agree with Margaret; the hospital cannot force him to have treatment. However, they CAN assist with, say, getting him Hospice care, or admitting him to rehab which may be an entree into his being able to stay there as a long term care patient.

Please call the hospital today and get the social workers there to help your father.
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I am pulling for you, Zeta. What a heartbreaking situation for you and the family.
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I had a neighbour who died and knew he was killing himself because he did not manage his diabetes. Al died before he lost a leg, but he had terrible ulcers on both legs for years. He did not manage his diet, well he actually knowingly ate foods that he knew would kill him. I would visit and he would be eating doughnuts and drinking regular pop.

He was about your Dad's age and had given up on life. His family could not 'save him from himself' and he got his wish in the end.
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Unfortunately, everyone is right. I would probably seek hospice care. My mother’s friend died early of the disease. When he was found(they had to kick the door in), gallons of consumed chocolate milk were everywhere, sugar cookie cartons, and brimming ashtrays. He may have not put a gun to his head, but the outcome was the same.
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I was just about to update that I called the social resources department about 2 hours ago when Barb suggested it then I got the phone call. They've been the most helpful so far but we're in the establishing my identity phase.

He was admitted overnight and they said they said he'd likely be staying there for at least another night. His friends administered honey to him this morning, and you'll have to forgive me but, his blood sugar was in the low 30s this morning and is presently above 300 now or something like that. It's just hearsay from his friends until the medical staff will speak to me.
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JoAnn29 Nov 2018
Just have them ask Dad if you can be put on the HIPPA form as someone they can talk to. If this isn't done, they can't talk to you about his condition.
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I'm now in the ICU with him. It sounds like they're having difficulty controlling his heart rythum, blood pH (high not low) and oxygen levels. His monitors seem to page the nurses about every 10 minutes.

My aunt is asking me if I should call in the family and the nurses are saying his doing better than yesterday. I'm hoping I'm making the right decision to tell her not at the moment.

This may seem like a strange request for advice but should I stop taking my antidepressant during this situation so that my attention is fully here and my anxity isn't muted?
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BarbBrooklyn Nov 2018
Do not discontinue your meds without talking to your doctor.
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So, I personally would call everyone that he loves and that loves him. He needs to know that he has a reason to fight for his life.

Having everyone there will let him know he has support and love.

Don't listen to the nurse, most have hard hearts and do not give good advice. I get it, if they didn't harden up they would burn out in no time, but this is not there decision. People also can rally right before they pass.

Get his support group in place quickly, he will also get better care, proven fact that individuals who have involved loved ones receive better care.

Do not stop taking your meds, you do not want the full anxiety of dealing with this. Trust me, it took 10 years off my life.

May God grant you peace and comfort and lay His healing hand on your dad.

HUGS!
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Zeta, I would probably want to keep the anti-depressant going so you're on as much as an even keel as possible during this crisis (the ICU environment is so inherently stressful!) but is it possible to put in an urgent call or email to your doctor or his or her nurse and ask them?

Stay strong! It sounds like you are handling things very well. :)
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BeckyT Nov 2018
Zeta, you don’t want to be going through withdrawal from your antidepressant and this at the same time. It would be to much. Stay strong girl. Hugs.
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Ok, so... I'm catching up with the doctors but it now sounds like this doesn't have anything to do with his foot, which makes me feel better but opens a whole bunch of unknowns.

I guess there's blood tests that can show markers for heart attack which is positively tested for. He has pulmonary edema, congestive heart failure, water on the lungs and decreased kidney output.

His doctor has come back again after giving me that news earlier and said that he's looking a lot better, which I can't tell but maybe because it's slow progress. He's being given a dieuretic which has increased his output, which is apparently good, but the concern now is not over taxing his kidneys.

I now have a new problem. I hadn't mentioned, I don't think, that my father is heavily into alternative medicine, being a practitioner himself. His associates want to come by and perform ultrasonic something or other on his foot, a dietian colleague wants me to go-to the health food store to get him food without surgar or wheat and his doctor who has been overseeing his care is asking for all sorts of information from his EKG and wants to guide the doctor here... Through me... Ugh... I don't want to be micromanaged.

I want to shut them down / out and allow one proverbial chef in the kitchen. I also unintionally missed my meds, so I'm going to follow everyone's advice and continue them after I find food :).
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zeta12 Nov 2018
Oh and the care worker, the person I got when I asked for a social worker, wants my father to go into assisted living / rehab. She says the care he needs starts at 2,000 a month but really needs 9,000 a month for full care. He says he only makes 1,900 total each month. She wants him and will help him to apply for MediCal. She said he may qualify and if he does the costs may be significantly lower for full care.

She did say Kaiser, his insurance, will cover rehab for a short period of time but we need to show the long term plan before he qualifies for benefits.
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Zeta, thanks for the update.

"I want to shut them down / out and allow one proverbial chef in the kitchen." Sounds good to me.

I'm so glad you are getting some helpful assistance and guidance from the social worker. Yay!
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This update is for me. I'm feeling so overwhelmed coordinating communication between his sisters / my aunts and his business associates of which out number my family 2 to 1 in both number and intensity.

I'm upset that he is conducting his business today and had me drive for an hour to get his computer. I don't think it's a good decision for him and made sure he understood I'd only help him if he felt capable. Fortunately it's just computer work and not a physical burdern so I understand it may be good mental excercise for him. Also I guess it speaks words to his health. I just hope it's real improvement and not rallying, which was mentioned.

I haven't showered since the day I left to the hospital and I'm feeling so horrible. I left my significant other without transportation and they're not doing well spiritually, which feels like that came out of the blue. I feel like I need to get back home for those reasons and work.

Im so worried about where he intends to go after this. The social worker said she'd help us figure out those next steps so I know I shouldn't worry but how can I not when it feels like he doesn't have anything in place?

I managed to take my important pills yesterday but apparently I passed out before taking my medication for controlling post cholestectomy side effects. At least I took those today.
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zeta12 Nov 2018
I also want to continue to thank you all for thoughts, prayers and advice. Even being able to share this is theraputic. It's of more value than posting these to Facebook because no one has biases with my father :).
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Have you called in any back up?

You do not need to be his girl Friday if it puts your livelihood in peril.

Don't let everyone run you ragged, if they want to know, come to the hospital and talk to him, like you don't have enough on your plate, sheesh.

Uuntreated or mistreated diabetes can contribute to all of the medical issues he is now faced with. My dad did the same thing to himself, until he almost died, he did what ever he wanted. Ugh!

I am sorry that your home is struggling with out you, shows how vital you are to your home and loved ones.

Ask the hospital to let you shower, they have facilities in place for that. You will feel better able to face the trials.

Most important, get some other folks on board so you can go home for a bit. Tough if he doesn't like it, you need to deal with your responsibilities and he can understand or not, doesn't change anything.

Thank you for updating us and take care of you!

Hugs!
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Zeta, a telephone tree might help. You pick someone you get on OK with in the ‘natural business medicine’ side, and someone on the family side. They have a list of people they phone with news. Depending on the number of people involved, the people they phone also have a list that they contact. They pass on the news, and they collect up the questions to pass up the tree. You deal with only two people. It is a real answer to ‘what can I do to help’. Even a 'telephone bush' helps - let one sister know, she phones the others. The chances of the hospital medicos spending time talking to the natural medicine practitioners is very low, perhaps just ignore that request.
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Zeta, if you don't take care of YOU, there won't be anyone around to advocate for dad.

1. Talk to the SW about a place to shower and a comfortable chair to nap in.

2. Eat real food. Ask if you can order at least one meal a from the patient menu.

3. dad is there to heal, not work. Say no to requests that have you running around. If necessary, say it's doc orders, or that you don't have the car ( have your family come get the car!)

4. Check out Caring Bridge. Or send one person an email with an update ONCE a day. Ask them to forward it.

5. Ditch the healer folks. Isn't that how dad ended up in this shape?

Take care of yourself! (((((Hugs)))))))
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I am sorry that you have to go through this. However, I am glad that you got some good advice and support here, as well with a SW.

But I must tell you DON'T give your dad any food or medications even if is supplements unless his Dr okays it. The Dr has to know what is going into your dad and what is going out of your dad. You don't want any bad reaction with food or drugs.

If your dad has a good amount of urine coming out that is a good thing!

Keep your head up. As soon as the Dr gets your dad's health under control it will be easier for you and family to know what to do with his living situation.

Take care of yourself.

God bless you!
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Zeta; how are things today? ((((hugs)))))
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zeta12 Nov 2018
Thabk you for prodding me out of my hole. I mentioned it in my update but I fell apart at his house over the conflict between him and his roommate, the events of the previous few days, the loss of this heirloom that I have fond memories of and trying to get home that night but being stuck there until the police arrived.

The highlight of my night was breaking down in his room, holding my grandfather's bible and crying for what seemed like 30 minutes before the police arrived :'(. His roommate lent her shoulder to me for the end part of that.

Finally when the police officer had left her and father and I prayed for the situation before I left for home.
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That’s a tough sitauation. Does he have type 1 or 2? My grandfather died of an infection on his foot because of his diabetes ( also 69 years old)... a lot of times Diet can reverse type 2 diabetes in a few weeks... and by diet, I mean, a fully raw plant based diet... please look into it
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zeta12 Nov 2018
Hi! It's aquired insulin resistance and he did reverse it, from what he's told me although he is an unreliable narrator of his own health. He says he does as you're suggesting but his roommate and business partner say he isn't following the plan well enough :(. I'm trying to encourage him to eat well constantly and start an excercise regimine but I fear the last part is no longer a possibility :(.
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I was diagnosed with diabetes in 2011. There is no cure, but it is manageable with a good diet. I find that the low-carb Banting diet works for me.

There is a wonderful and extremely helpful American diabetic forum, if you'd like to get guidance for your dad. www.diabetesforum.com. The community is amazing and offer great advice as well as a good food plan with recipes too.

If he's leg is 'fixable' , let the medics do that, but he would have to go on the correct diet to keep his diabetes under control.

Good luck.
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zeta12 Nov 2018
Every doctor who has seen him says there's nothing that can be done because he has a bone infection. To the best of my knowledge bone doesn't have the same artieral blood flow as soft tissue or a lymphatic system that antibiotics could reach. Again from what I understand it's like trying to disinfect a sponge without damaging all the healthy tissues surrounding it :'(. He is likely going to try to let them fix it to unto the end.
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Does he live in an area where a doctor will go out to see him? And he can have in-home care?
I pray that everything will work out for all of you.
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zeta12 Nov 2018
He doesn't actually have a place to live at the moment. He put in his 30 day notice over the row with his roommate while I was there. I'm hoping to get him into rehabilitation, then short term full time care through his insurance and then get him into either an assisted living or long term full time care through medical, if he qualifies :(.
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I recently read that an intermittent diet has done wonders for people with diabetes T2. I wish I could share the link but don't have it anymore. I'm sure you can Google it and find something. On the other hand, as you say your father's mind is sound, perhaps is time to gather several family members and friends for a serious talk. He may listen better if it comes from a group of people who care about him than just his child because parents usually think they know better than their children. I'm sorry about your situation. It's never easy to see our parents getting older. Don't forget to take care of yourself. You deserve it!
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zeta12 Nov 2018
Thank you. I'll search for that. I've been trying to positively reinforce the doctors advice through his friends and business associates :). Ibe been told by many of them that they were already doing that for him but I'm trying to conduct the messages now though. It seems like it's working but it's hard to tell when he withholds the truth from us. Thank you!
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Hi, I'm sorry for not updating in the last couple days. My father kind of pushed me over the edge on Friday evening. I stopped at his house to grab some valuables. When I got there he couldn't explain to me where the key to his metal cabinet was, he's apparently even more disorganized than I am, and I searched for a really long time. I finally used a common object to pry it opened only to discover that 3 of the 5 family heirloom we're missing. He made me call the police to report it while he roommate pleaded with me not to cause a scene so late in the evening that could upset her elderly father :(.

With my father being ill and no one knowing how long ago the heirloom went missing or if there could be the possibility it was at the storage facility he apparently is renting they wouldn't open a case.

Then I found out that he was telling my family and others that the roommate had locked me out and that I caught her with that cabinet opened. This all is causing me to think he may not actually be of sound mind. My father also stopped breathing several times Saturday night / Sunday morning and the doctors and nursing staff were very concerned and gave him some medication to... freeze...? his airway? I didn't understand that part. He sounded awful; the first day I felt he didn't get better.

He's being sent to another facility today for an angiogram and probably an angioplasty at the same time.

Anyway :( an update for me is that I got home Saturday morning only to take my significant other to the ER all day due to some yet diagnosed back pain that causes them to get violently ill :(. Sunday our friends had a wedding and I'm so glad we got to make it for that. They started a famiy 10 years ago but we're finally tying the knot :).

I'm still stressing out over having to move his stuff out of that house within this 30 day notice thing. My aunt is trying to see if her niece's, my cousin's, husband and son would be able to help me pack and move his things to storage.

Again, thank you all for your support, advice and just letting me chronical this somewhere! I hope if someone else who might go through this might later benefit from just reading my story.
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Sounds like he wants to call his own shots. If you can’t move closer to care for him I suggest you agree with the caregiver and be by the phone to help. It it seems as if it’s out of your control as your dad wishes.
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Read your last paragraph, Zeta. He is doing you a huge favor. Day to day when you are alone doing this causes resentment and guilt for these emotions. Everyone tells us take care of yourself. Now I am saying it- Ha ! It is true, however. We tunnel downward into despair as we try with love to help our loved ones. Now, if he is in the hospital, it is their social worker department who will figure out where to put him. Nursing home-rehab section, call it, as it doesn't sound so final. You will feel better knowing he is somewhere safe and taken care of. Then you see him when you can. They have activities and stimulation he can participate in. He will , at least, have staff to talk to and other patients and staff he can talk to. So don't take it on yourself at home. Once he is in the hospital they can and will take it from there. They do this daily. Susan .Retired nurse.
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I would say there's prob some long term in house fixes. But in the short term this is social worker territory. Care for anyone over 75. Requires really a 50 month 100 month 300 + plan. Short of being rich. Everyone else has to come up with a very good 30 plus, year plan for care.
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If your dad is telling different stories to different people it could be that he has sold those items & doesn't want you/the family to know - most people are bad liars because they don't remember what they said if it comes up again

If he is competent then there's nothing that you can do - be prepared that if gangrene sets in & he doesn't want the amputation then it will take a week or so & he'll be pretty drugged up plus there is a terrible odour - it is time for you to realize that not everyone wants to continue life unless it's on their terms & you may have to just be prepared to let him go the way he wants

It is between a rock & a hard place now but until he is declared incompetent then you can't do anything - does he have a P.O.A. in place? - if it's you then you need to think out what to do - most likely once he is so far gone that you become in charge then it will be too late to get the amputation done anyway

FYI ... my mom had her leg amputated in early July but the other foot became an issue in Sept. - she was not a candidate for a second operation as she never was able to eat well after the first one - she died 8 Oct. - I know it is hard but you will have realize that doing anything is just delaying the inevitable & sometimes that isn't enough as much as you want it
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If his leg is that bad, he can show up at a hospital and any time and he'll likely be admitted. Once he's admitted, all the arguments over treatment can happen there. And, if he's having the amputation, he will be sent to rehab after the hospital stay and then, if he's still unable to take care of himself, he can't be discharged, he will be admitted to a SNF, pending Medicaid (unless he already has Medicaid).

The key is, DO NOT indicate that you can IN ANY WAY physically take care of him. They will try to discharge him to your care and then you'll lose your job, your relationship, and your own health. Stand strong. Even if you did take care of him, sacrificing everything, he'd eventually need to be in a SNF. If he has the amputation, sales through rehab and is independent, great! He'll take care of himself.

Try to get him admitted to a hospital near you. Bring him for a visit and then take him to the local ER. Ignore his objections and drama. How will you take off over and over again to visit him at a distant hospital and SNF?? You can't.
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"The people who've let him into their home are suggesting the best thing is that the hospital admits him and provides him the care he needs for a couple days so that he regains some strength and continues on his treatment to recover."

Sounds good to me.

"Obviously that'd be wonderful except I know I need to put something into place in the event that's not what happens." 

You need to? Why? I mean, why you? Isn't that your father's business?

I think you should give your father's generous and kind housemates your blessing. Your father is fortunate that these people continue to serve his best interests even if he's apparently lost sight of them.

You'd better discuss with them, while you're at it, what they ought to do if your father refuses this plan then goes on to develop sepsis and fall unconscious. I recommend they do not ask for prior instructions from him so that they will remain free to respond appropriately to the emergency.

I am sorry, I know I am being harsh. But truly what makes me angry is not that your father is making these choices, I agree that he is entitled. It's that his choices are hurting *you*. His friends seem to have their heads screwed on and I'm less concerned for them, but I'm sure they are extremely anxious to get him out of their house.
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I don't disagree with any of the answers listed below so far.
I would add one possible additional resource... if he is admitted to a hospital that has a palliative care team, ask for a consult. Palliative care, which is NOT the same thing as hospice, can help you and your dad and his care team, establish a plan of care that honors his values and takes into account his social situation and relationships, including you and your relationships. They can help you get the help needed to find out what options you have/he has for treatment and for care, regardless of what treatment he agrees to or not. They are very good at helping people get clear about what they really want, rather than making reactive decisions. For some people, "dying rather that amputation" ends up being the most respectful route; for others, it may be based on reaction to having doctors that have not understood how to help them understand their situation. They are also expert at helping the medical team assess decision-making capacity, and supporting you, or whoever his surrogate decision-maker is, to help make decisions if he becomes unable.
You may have some very tough realities to face in the coming days/weeks/months; they can support and slow things down for you and your dad to come closer to the "same page". I wish all the best, Zeta, for you and your dad.
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