For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic worries Go to previous topic Go to next topic Go to higher level

By flint219 On 2010.06.06 01:52
Someone I love has Parkinson's Disease. He lives far away from me on a farm all by himself. He has gone through some very dramatic and unhealthy relationship changes recently. I sometimes suspect that his decision making ability is impaired when it comes to relationship, career, and financial situations. Not being with him every day, I can't accurately gauge how he is holding up on his own. If asked, his answer is always that he is doing fine, though I don't believe that is always true. I know he falls asleep sporadically and unexpectedly. He has had a falling asleep related car accident but, thankfully was okay. He says he is managing his sleep pretty well now, but from what I've seen he has not been.
From a financial stand point, he cannot afford the best care. In his rural area, his doctors are not great. Because I'm so far away, I never get to hear what the doctors say. I worry, more and more that his mind, and not just his body, is being affected by this disease. I am worried that when the time comes, if it has not already come, when he needs a constant care giver, I will not have the money or the home to provide the support. I can hardly afford to take care of myself. Being so far away from him scares me because I don't know how he really is. What I've seen when I visit worries me. Knowing he is alone and that he drives a lot scares me. I don't really know what to do for the long run. I know I have other family who will reach out to help, so it is certainly not all on me. However, I want to be there for him. He is my Dad. I wish I could save him from the hard life he is living but I know I can't.

I don't expect a miracle solution. I guess I'd like others' perspectives. I've never posted before. Actually, I'd never been to this site before tonight.

By Pearly4 On 2010.06.06 08:00
Long distance is difficult but not impossible -- most agricultural areas are pretty tight. Its possible neighbors etc might already know and be involved - if not and you know them, maybe invite their input? Same with church membership. There's a possibility of inviting anger over "exposing" him or inviting gossip etc, I realize, but if handled correctly by all involved, it might work.

Suggest that maybe you assist in contacting an Area Council on Aging -- they might be able to assess and assist, sometimes at low or no cost.

If not involved in the financial part of his life, you or someone else needs to be -- are bills being paid, wills in place, living wills, etc.? Addressing these things is difficult sometimes -- maybe by asking his input into your own efforts to set things in place for yourself -- "I'm thinking I need to do this, have you done it?"

Again, HIPPA laws prevent doctors from talking with you, but don't prevent you from writing a letter stating your concerns and encouraging a visit afterwards from your loved one!

Actually, google "long distance caregiving" and you'll find other suggestions. Caregiving (caring in general!) is a thankless, difficult and time consuming process -- Good Luck!

By LOHENGR1N On 2010.06.06 09:15
flint219, Hi and welcome to the forum. I Have Parkinson's Disease, I live alone with my service dog. I was diagnosed back in 1986. So I'm my own caregiver and a caregiver to the forum, lol, even if at times they don't think I am. There are several of Us patients that interject ourselves on here. There are a few things that would help Us figure out how to help and to maybe ease your worries for now. If you're comfortable with telling Us (remember this is a public forum so only if you're comfortable, if not feel free to email me at if you'd feel better trying that.) How long Has your Dad been diagnosed and what if any med's He's on will give a better idea of what might be going on.

It is normal to worry and have awful thoughts envisioning worst case scenarios. flint, it is also normal at least for some of us either healthy or ill to have impaired decision making regarding relationships, career and financial matters.

It seems like You're researching Parkinson's Disease (you found this forum) keep it up and learn as much as you can about it to help your Dad. Depending upon His situation you may not have the need to rush into proxy's or will at this time. Remember these thoughts and actions will have an effect on your Father and might best be discussed in Person with the family all involved. While they are important and toward the latter times will be needed you don't want to send someone into a tailspin wondering what others see and the patient doesn't. Especially one living alone, We don't want to bring about depression either. So whatever information you're comfortable divulging will be helpful to address His situation. We're all here to help get You and Your Dad through this mess. Keep posting! Again welcome. Take care, best of luck and hang in there.

By Emma On 2010.06.06 10:20
Welcome to the forum, we're glad you found us. Being long distance I think you are in a difficult, but not impossible situation. Besides caring for my husband with PD, I am partly responsible for my aunt and uncle who live quite a distance away. My aunt has Alzheimers and my uncle drinks. We found a great housekeeper for them who does a lot more than cleaning and she emails me several times a week to keep me informed of what is going on. If your dad is a veteran he could possibly qualify for some help from the VA, including long term care if and when the time comes. I understand what Lohengren said about not wanting to upset your dad with talk of wills and proxies, however, I am a firm believer that every adult, regardless of their age, needs to have those documents in place and needs to share that information with a trusted person. Anyone, at any time, could have an accident and everything could change in the blink of an eye. Since your dad already had one problem with driving it's possible there could be another, worse, incident and no one would have the authority to speak for him. The suggestion someone made of saying something to him like "I'm working on my will and advance directive and wondered if you have those in place" is a good idea. The fact that he's still driving is the biggest thing that jumped out to me from your post. The other stuff is worrisome, and it's always hard to find a balance between staying safe and being independent, but poor driving is potentially dangerous to other innocent people. You are lucky that you have other family members who are willing to be involved. You will need to work as a team. It's hard but it can be done. Hang in there and stay with us.

By flint219 On 2010.06.06 13:08
Thank you all. You are helpful.

I am also very worried about his driving. The thing is, if he can't drive, he is literally trapped and isolated on the farm. That is not to say he should be driving. Thats just the situation as it stands now. His friends are great, but they live fairly far from him. I don't know if neighbors would be willing to check in. If they are on good terms, maybe. I'll find out.

I'd like you to know something really awesome about my Dad. He's one of the leading actors in his community theater group. He gets on stage and performs in front of lots of people and he loves it and they love him. I hope that he can always be involved with theater because that is what makes him happy. He writes plays too, so if there comes a time when he physically can't act, he can still create. I'm proud of him for that.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you