How to get over the frustration of a demanding end-stage Parkinson's husband?

Kaybaby -- It seems that you stopped smoking once before. I hope you will soon permit yourself to make that a high priority for yourself again and follow some of the good advice you've received here on how to deal with your husband.

So posting about a drug that is available if you look, that worked miraculously well in all test subjects and has had tox studies done at much higher doses, is violating terms and conditions!?

It seems to me that any terms and conditions should have the best interests of people with PD and their caregivers heart..?

Are you saying that people here are too stupid to look at the information I have provided and make up their own minds?

Ask yourself this: Why has this guy considered respected, valued and trustworthy on a forum populated by a lot of the best minds in the field of cutting edge research?
A forum where 1000s of people have bought and taken cutting edge medications, peptides and plant extracts from the same lab he plans to use, with positive effects...

Ban me, or not... I'm not coming back and neither should anyone else if this site is more interested in keeping its customers than seeing them well.

"It sounds too good to be true. So it isn't ! " said the caveman, with his spear, to the 1st person with a bow and arrow...

FL you are violating terms & conditions of website as noted before. Reported.

How do I NOT post!??? :)
I do not want to deal with the same panic you have and will not have to IMHO.
Please see my post in:
"How do you handle the mental changes of Parkinson's disease?"
and read the links to Georgetown Varsity's study.

I am in a similar situation with my husband. Many many times I feel as if I am going to crumple. (That's a nice way of putting it.) Thank you Kaybaby for posting your frustration - I do not have two to take care of - I admire you and all that you have done - thanks to all the replies with realistic and confirming suggestions. It helps!

I agree with all of the above advice especially the part about placing him and your son in appropriate facilities. In this case it is not even a choice; it is life or death (sorry to be blunt) for you. With your health problems you need your energy to take care of yourself and get healthy. After that, use your energy to provide support via visits and bringing little things to your family at their placements rather than killing yourself trying to cope. Think of how they would feel if you were gone. _Please_ take care of yourself.

Kaybaby, Great advice from Pam, Maggie, Jessie, and Garden! I take care of my 90 year old dad with late onset Parkinsons at home on a feeding tube. He's had several aspiration pneumonia's, was in ICU on a ventilator for 30 days three years ago. My sister and I stayed by his side 15 hours a day for several months when he was hospitalized, brought him home. He doesn't remember that part. He was the sweetest daddy to us growing up, but has now turned stubborn, and difficult. Mom has been diagnosed with Alzheimers, so we have both of them to care for. A CNA helps now us so we can get a break. I totally understand how exhausting it is. The driving to doctors, getting supplies, behavior challenges you face.

Kaybaby, give hubby some Benadryl for his allergies. Benadryl is beneficial to Parkinson's patients, but not Alzheimer's patients.
Second, read what you wrote, this is killing you, so stop trying to be superwoman. If the Benadryl does not work, get him to Memory Care.
Third, get your son to a group home where he can live with peers and have a much better social life. They will take his SS check as full payment and give him a generous personal needs allowance and transport him to a day program. I have a sister in a group home and she loves it.

You know, sometimes it rains sooo hard in one's life that the only way we save ourselves is to play martyr. I think that's what's going on here. Your plate is overflowing, and yet you can't stand up on your hind legs even to protect yourself.

You already know what you've got to do: take control...learn to say no...stand up for yourself and, most important of all, feel okay about doing so and shed the guilt.

If you can't do that, you need counseling. You are allowing a very sick man to completely control you. It's time to turn the tables. You simply CANNOT caretake from the "he's a tyrant" mindset and stay healthy -- physically or mentally. You WILL break.

GardenArtist, It is ok that you thought that he was my father. He is 10 years older than I and has always treated me as a youngster. You know like you don't need to do that. He had already done it so it was foolish for me to want to do it.
Thanks!

Kaybaby, I know this is a very stressful time in your life. When people get old and sick, empathy with others is one of the first things to go. Everything becomes about them. I don't take care of a spouse, but I do take care of a mother. Sometimes I imagine flashing neon arrow signs saying "Me" floating in the air around her, pointing at her. It is how her life has become.

I know there is no way to change her, so I have to protect myself. Mostly this has to do with not jumping because she says to. I find myself saying "We don't need to do that" or "I'll do that later" when she makes demands. It can make her mad, but better her mad than me crazy.

Kay, I am so sorry in referring to your husband as your father. For some reason as I read the post my mind made the switch, as it sounded so much like other situations that have been raised here frequently. Please accept my apologies for this confusion.

The first revamp of your attitude should be to reactive your self respect, and use that to set boundaries and establish what you will or won't do, starting with stopping the instantaneous response demanded from your father.

He's self destructive in that he refuses to care for himself yet apparently demands that you provide instant attention.

If you're designated as proxy in a Living Will or Advanced Directive, check the terms and conditions to see if you can step in and make decisions for him. If so, bring hospice back whether your father likes it or not. Unfortunately, though, he will probably be rude and uncooperative, so that presents another problem in that not only will he not take care of himself, he won't allow someone other than you to do that either.

The next time he has aspiration pneumonia, and given the situation it's only a matter of time, talk privately with one of the treating doctors and the discharge planner to arrange for him to be placed in a facility, which probably would be hospice if it's already available.

Even eliminating the hostile attitude, a wheelchair bound person is too much for one person to handle, and it's obviously going to affect your own health and possibly your son's as well.

It's time to take a stand; you've already made sacrifices trying to work out an impossible situation, your father won't cooperate, you can't perform to the standards you'd like because of that, so it's also time for you to be relieved of this responsibility before you become more ill yourself.

I think the difficulyt in these situations is always the emotional attachment, which can become like quicksand and trap caregivers who slowly sink further into its deadly grips. These caregiving situations always involve 2 people - the caregiver and the recipient, and in my opinion it's absolutely mandatory that some attempt to balance each person's needs be made so that the situation doesn't deteriorate into one resembling some kind of servitude.

An imbalance of control also seems to be present, with the elder assuming more and more of the control while the caregiver sinks deeper into despair and poor health.

Keep telling yourself what I've written, and remind yourself that you've given it your best shot but your father REFUSES to cooperate and allow you to help him. If he's self destructive, don't let him take you down with him.