My dad (69) has Advanced Parkinson's Disease and Lewy Body Dementia. I believe he is reaching the end stages, and he is trying to fight against it and wants to keep seeing new doctors. I want him to keep fighting, but at the same time, I want him to just enjoy what time he has left. He hates living in the Assisted Living Facility, but none of us can take care of his 24/7, and my siblings and I work full time. He refuses to admit he has dementia, and does not believe doctors are helping him. I don't know what to do or how to handle.

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You know, I have yet to hear of anyone who loved/loves the necessity of moving to ALF. It isn't a choice we would make for ourselves. I am 80. There comes a time when it is the ONLY choice we have. My own brother, when he was diagnosed with Probable Early Lewy's Dementia absolutely hated it. He said he would rather have died in his car accident than had to face the uncertainty and inevitability of loss of all control of his life; but in those early stages he recognized there was no choice. One day he said to me of his ALF "You know, hon, I have to laugh. It's a bit like the communes we can remember in the 60s. Always a squabble over something silly; always a community meeting. And while I sure can't say I like it, it's a bit like when I was in the army: I make the best of it".
My brother died of another malady before he could sink into advanced dementia and the denial that would likely have come with it. Denial is almost a hallmark with ALL dementias.
You can do what you can do as POA for medical in telling doctors that your Dad needs to be reassured, to know that he is doing "fine", and etc. But there is not likely to be a sense of peace for your Dad regarding all this, and that needs simply to be accepted by the one who can still reason--that's you. Do the best you can to let him have what control he can have of these issues, and do the best you can to limit things; know that not everything can be fixed and you have entered the land of "making the best of it".
I sure wish you both luck.
Helpful Answer (7)

I told my dad that he could do whatever he could pull off without involving me.

This could be the solution because executive function goes with dementia, so he may not be able to go to a new doctor by himself.

It is hard to admit you have a terminal illness that will only progressively take your life.

I'm sorry for your dad and family, he is in a tough spot.
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I agree that CBD oil may help. My niece had a stroke at 40 and swears that it helped her to not need a cane or walker. But, if like my Moms AL all meds, prescription and OTC, are kept with an RN or Medtech and distributed by them. No medication is allowed in the room or can be brought in from the outside without a Drs. order.

Liked what ITRR said, if he can make the appt and get himself there, then he can go to whatever Dr he wishes. But your not taking him.

Does Dad have a Neurologist, if no he should have. If he does, next visit ask the doctor to sit down in front of Dad, look him in the eye and tell him, this is it. There is no more any doctor can do for him but give meds for the symptoms. There is no cure at this time for Parkinsons.

I actually cut down on my Moms doctors when she went into an AL. They didn't have a doctor associated with the AL so Mom kept her PCP. He had her coming every two months. All my Mom took was BP and thyroid meds. No need to go every 2 months. By law, to have prescriptions refilled it was every 6 months. She had a thyroid Dr she saw every 6 months once her #s were good. A stomach Dr who had seen her for a while concerning a thickening of top of her stomach he had been watching but was sure it was from Gerd she suffered from. Took him to a year. Same with her urologist, pretty much stopped him. She had bladder cancer at 80, caught early so cured but he kept wanting to do a yearly scope passed the 5 survival rate. With Dementia, if the cancer came back, we would not have put her thru the treatment or surgery if needed.

You just have to learn the word No. With Dementia setting in thats going to be hard so you need to learn how to redirect. Yes, time for those little white lies. Better for him and better for you. Conversation between a friend and her father while he was living in a NH:

Dad: J can you take my car in to get it worked on.
J: yes Dad
Next visit
Dad: Did you take my car in
J: Yes Dad I took it in
Next visit
Dad: Is My car done
J: Yes Dad, picked it up and took it back to the house.
Dad: Good.

By this time there was no car, there was no house. His wife of at least 65 yrs had passed not long before. But why try to explain that to him. Yes, he suffered from Dementia.

Don't run yourself ragged for someone you can no longer reason with. Just say, I'll look into that for you Dad. When he asks, did you call that Doctor, say yes but he is really booked up so be a while before I can get you in. I made an appt for my nephew back before Thanksgiving and he has to wait till March to see him for sleep apnea.
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Are you his PoA? Are you able to have private discussions about your father's prognosis privately, without him being present so that you can ask his team what other options there may be for him?

You may need to tell him therapeutic fibs in order to deflect his pursuit of more medical appointments. He not be able to work from reason and logic anymore, or even memory so trying to placate or convince him may only exhaust you. Dementia also robs people of their judgment, inhabitions and ability to have empathy for others'.

Is he being treated for depression? Parkinsons is a cruel disease... I wish you all the best as you help him through it.
Helpful Answer (5)

I’m so sorry that you’re going through this. My mother lived to be 95 years old with Parkinson’s disease. She was diagnosed later in her life, and the disease progressed slowly. She did develop dementia later on as well.

Your father is younger. When a person is diagnosed with Parkinson’s disease at a younger age, the disease progresses faster. It’s sad.

One thing that I didn’t know about Parkinson’s disease was that people who have it can have low blood pressure.

I remember a time when I took mom to the ER because she wasn’t feeling well and her blood pressure was extremely low. They took her off of the blood pressure medication that she had been prescribed years earlier.

When is the last time you spoke with his neurologist? My mom took Sinemet for her Parkinson’s disease.

At one point. my mother was trying to walk out of the front door. She started seeing a “little girl” in dreams and then she said that this child would visit her when she was awake too. So, don’t be alarmed if your father tells you about hallucinations. Her neurologist prescribed Ativan and Seroquel. Adding those meds helped quite a bit.

Mom continued with Sinemet until she entered her ‘end of life’ hospice home. They took her off the Parkinson’s medication. She was given her Ativan and Seroquel, plus morphine. She died peacefully.

Best wishes to you and your dad.
Helpful Answer (5)
Kmi7688 Jan 2023
My dad is taking Sinemet, and was on Seroquel and Ativan, but he felt they were not helping him. He did not take them for long, but was extremely aggressive about not taking it, so the doctor agreed to not force him.
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Do you believe his doctors are helping him? He isn't in full possession of his faculties anymore, so you're the one to decide.
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At this point and time there's not much any doctor can do for either your dads Parkinson's or Lewy Body Dementia, other than medications for the tremors and hallucinations.
Lewy Body is one of the most aggressive forms of dementia, with a life expectancy of 5-7 years, and the only outcome is death if something else doesn't take him first, so it does seem fruitless to keep doing from doctor to doctor doesn't it when there are no cures for either available yet?
Your dad is very young to have Lewy Body dementia, so perhaps just having a good neurologist that is familiar with the disease of dementia and Parkinson's, would be helpful to you both to help with any of the symptoms that your dad may be having from either.
I wish you and your dad the very best.
Helpful Answer (4)

You might try therapeutic fibs…Depending on his abilities but at some point just reassure him that the appointment is made. If he is sharp enough to remember that it is on Thursday the 25th of March, then it might have to be rescheduled as time gets closer. Dr had an emergency, not the best dr for his case, looking for a new one, etc. Tell him whatever will make him happy. the reality of his life is difficult.
If going to dr appointments is the only outing he gets, that might be part of why he wants more doctors.
I had an aunt who had the same diagnosis and her daughter used CBD oil drops and believed it helped her. Her neurologist knew and was fine with it. I think that was the only dr she saw. She lived several years after being well enough to be concerned about doctor appointments or anything else.
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If dad doesn't believe doctors are helping him, then why does he want to continue seeing new ones??? That makes no sense to me, but then again, dementia makes no sense either.

Your dad would likely benefit with a hospice evaluation if you feel he's approaching the end of his life. He, on the other hand, might vehemently disagree :( Many people feel that 'hospice' is a death sentence when in reality, it's just a way to STOP rushing around to different doctors hoping for a cure to terminal diseases. Your dad would get to live out his end days/weeks/months/years in comfort without going to hospitals and being poked and prodded unnecessarily.

My mother had advanced dementia and I took her to different doctors and to the ER innumerable times, all to no avail, really. When hospice finally accepted her, I was extremely relieved to be honest, and all the ER visits finally ended. She was given Ativan to calm down her Sundowning, and things did calm down significantly. She lived in Memory Care Assisted Living and passed in February.

I agree with the CBD oil or gummies, by the way, BUT they should contain THC in order to be effective. W/o THC, CBD is virtually useless and did absolutely nothing for my mother or for me when we tried the gummies. With THC, however, a person achieves an amazing level of relaxation and relief from PAIN.

I wish you the best of luck trying to manage your dad and all his issues.
Helpful Answer (4)

When I became POA I stopped all the doctors and switched her to a primary MD who specializes in geriatrics. I also had all unneeded meds stopped. She gradually forgot she used to see 9 doctors!!! Life has been better and her dementia was better without all the meds.
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