My Dad Seems to be Giving Up...

[CariCanRun]

I'm American. from California. I live in Scotland. (I know, I ask myself how I got there too, but my husband is attached to his country so I moved).

My dad and his wife live in Nevada. I come to visit three times a year. Up until last year, Dad had some strangely good days, seemed almost like the Parkinson's didn't exist. There were bad days too, but it seemed better for a while.

The last year that's all changed. He's considered to be advanced now, even though I'm married to a doctor I am clueless.

I arrived at his house yesterday for a visit. I'm always anxious because I don't know what to expect. This time was so bad I almost didn't get on the plane, but I'm here. I hadn't been able to speak with him for a month and it was unusual and I was frustrated. A message here or there from my stepmother is all I got. As soon as he saw me he hugged me, all 130 pounds of him, he was so happy I was here and I was happy to see him of course.

I found out he somehow broke his iPhone so our FaceTime chats were impossible. He also broke his iPad so couldn't chat there either. He never picks up the house phone.

So, I arrived to find my nephews here (11 and 9) and they were a good surprise, they're my boys. I sat down with my stepmother to find my dad sleeps ALL day. My nephews had been here a few days from California and he had barely taken an interest in them. I KNOW how much those kids mean to him. But he acts like nobody is here. He told me, "you probably feel like you wasted your time to watch your dad sleep" ... I said, no way, worth every penny dad. I love you.

He spent most of the day in his own world and going to bed for random naps. My stepmother says all he does is sleep. So, I'm confused. He eats, but he's lost 70 lbs. He's been checked for every other disease, nothing wrong. Just Parkinson's. My stepmother is sick and tired of them lumping everything from a nap to a runny nose to Parkinson's.

Next week my stepmother is going to California a few days to help her mom. My dad usually loves that, he says it's our time. But, something else is going on. I knew I was going to be here for Father's Day but he's summoned my brother and his wife to be here. Why not their sons are here? My brother and I don't get along.

So after Sunday, everyone will leave and it will be just me and Dad, our time. One problem. He is petrified of my stepmother leaving, even for a nail or hair appointment. He's never alone so it's not that. A bad analogy but my husband and I had a dog and he became blind and diabetic the last four years of life. He was happy and healthy, it was a bad hip that unfortunately took him from us at an old age. But as much as our dog lovved my husband, if he wanted to go out to pee or he was hungry, he'd come find me even though my husband was right next to him. My dad is doing the same thing.

What I mean, he knows I can cook him food, drive him where he needs to go and help with his medications but my stepmother is the caretaker. I guess maybe part of him feels he's supposed to be dad and I'm just supposed to relax. I have a million thoughts.

How do I know when the end might be near? He's having increasingly big problems walking but insists on doing his own thing. Still, if he can't get my stepmothers attention, he goes to bed. And she's a saint, but she's genuinely very stressed and I know, on a different level, the feeling of always having to be on guard for what might come. The difference is, my dog was freakishly happy despite his loss of vision, he just needed help to to his "business" outside. Even his diabetes shocked the vets because his tests always came back in the right zone. But my dad isn't my dog, he's my dad. He's miserable and he'll talk a little, then nap. Lather, rinse, repeat.

I'm lost. Is it time to move home a while? Do I hope for the best and he might change? Am I going to get "that" phone call from 8,000 miles away?

Never had so much indecision in my life.

I'll stop now. The tears that failed to come earlier are now flowing like buckets at almost 4am.

I will say this. I hate this house. Ever since my dad retired to Nevada, to look at a golf course he can't play on, he's been unfulfilled. Nothing but negative memories here. I wish he'd stayed in Los Angeles, at least I'd have some good times to remember, to feel, about his home when there. And I think he would too.

Ugh.

[Hidden]

See my profile. Do your friend a great favor. Start him on high dose thiamin HCI

[Joynb]

I am sad for you and your dad. Might it help if you went with him to see his neurologist and asked him directly why your dad seems to be going down hill so fast?

[KERRINGTON]

I feel for you as I went through this a number of times with close ones. What helped is I was within an hour's driving time, had my sister and husband's complete support, and access to $ in order to hire caregivers. The caregiver went every day to help my loved one, and followed my supplement regime, as well as meds. I also hired a outgoing person for two hrs a day to come over and visit my mom and play board games, fold laundry, do small things that was party of her daily routine anyway. I also called 1 to 2 times a day to speak to my relative, and we visited 2x weekly....1 from me, 1 from my brother.

START giving him safe supplements that are working for people on this site, then

you have to figure out his medical needs and look for a PD doctor, and an alternative MD.

You prob need to stay here a few months to straighten things out...ps vitamin d 3 really helped with energy among other things.

[Hidden in reply to KERRINGTON]

Vit D3 1,000 IU : …daily supplementation with 1200 IU vitamin D3 for 12 mo significantly prevented the deterioration of PD….academic.oup.com/ajcn/artic...…. morning (evening may interfere w/ sleep). Very high levels of vitamin D (above 10,000 IU a day) may cause kidney and tissue damage. Evidence of risks at lower levels is limited, but some studies offer tentative signals about adverse health effects.

[KERRINGTON in reply to Hidden]

After taking 15,000 units my energy level soared, felt almost normal. I'm trying it at this dose for a short while, then will reduce it to 1200. I've been on 3 to 4 gms of Thiamine hcl since mid March too.

[ion_ion]

It seems he needs the right dose of medication and vitamins.

[Hidden]

In all of your thoughts, never forget that this is about your father and not you. Also remember that death comes to us all and all the thiamine in the world will not stop it. I have sat with many who are, in a word, tired. Tired of this life - bodily and mentally. They were not always like that but life brings changes. Do you know he is not fulfilled? He may not want now what he once wanted. Holding you all in prayer.

[Despe]

I know the feeling. I hate the state I reside as everything bad happened to us here. I lost my little dog to bad, greedy vets, lost my best friends (husband and wife in a car accident), and my husband was diagnosed with PD in March of this year.

However, I didn't give up. I have searched and read everything about PD and am trying to find the best therapy protocol for my husband's PD. As a caregiver and a wife of 45 years, I have shed a lot of tears, wondering why, why???

[Astra7]

It's difficult when you live so far away, but you cant predict how long he's going to live so you may move there and be there for years! (good opportunity to get away from Scotland though!!)(just insulted all the Scots!).

It really sounds like he needs some more medication, and also some b vitamins as well as pro biotics and mannitol etc. Can you get to a neurologist or an integrative GP?

It must be very difficult for your step mother and I'm sure you being there will let her have a much needed break.

Hope it goes well.

[Hikoi]

PD is as tough on the support people as it is on us who have it. Its such a complicated condition I find i just go with it now. How long has your father been diagnosed?

One thing stood out for me is the level of your fathers anxiety. It is very common in pd. does his neuro know and is he on any treatment. He needs drugs for that now i would say. All the best.

[LostinHeadSpace]

Cari, I just wanted to say, this is an overwhelming load on you. Since you care so much about your father, you clearly want to do anything to help him. But during so much stress on you, it becomes impossible to figure out what to do, because there's not a clear path that would improve things. I'm not saying this very well, except to say that those of going through it can relate to how overwhelming it is.

About the medical side, could his PCP run a full panel of blood tests to rule out other things that could be going on (not that there are). Could it be an atypical Parkinson's? (check out the PSP board on this same site).

Hang in there and let us know how it goes for you.