For those who care for someone with Parkinson's disease
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By Tara On 2009.01.04 05:12
I'm new here. I have so many questions, I don't know where to begin. I guess I'll just tell my story. At 3 AM, Dad was wandering around the house, talking about wanting to paint the ceiling (it's 4 AM as I type this). This house needs major renovations, but his logic is backward: he's talking about window blinds and paint, when extensive, major repairs must be done first. He's also talking about painting the ceiling himself, even though he is 78 years old, on a walker, and so stooped he can't even look up one foot above his head. This is only the latest in a steadily-accelerating succession of incidents like this. I have scheduled a dementia assessment appointment for January 22; I don't think I can take much more of this. I am my dad's sole caretaker and I live with him. He was diagnosed with P in 2004 by his general practitioner, but a nationally-renowned P expert swears he's had it much longer -- since 2000. I can't sleep right now because I'm too worried about him. I just needed to be able to unload somewhere to someone who knows what I'm going through and maybe can offer some advice. So I Googled "'parkinson's disease' caregiver forum" and this was the first site to show up. I'll be checking around the site for other resources later on, after I've gotten (or tried to get) some sleep. Even if you can't offer any advice, it sure would be good to hear from someone who's "been there." I look forward to corresponding with you all.

By lurkingforacure On 2009.01.04 08:07
Welcome, you have come to a great place. This is a very special forum of compassionate, caring, wise, and experienced caregivers who are very familiar with PD and all of its nuances. Whatever you are dealing with, someone here has probably experienced it also and can offer help. Most of the folks here know far more about PD than most doctors, including some neuros. It is a sanctuary, as well as knowledge bank!

One of the things I have read that may help you right now is to remember that PD affects the mental processes of the brain, some more than others, and that your dad may be at that point. It will be useless to argue or try to covince him, since at that point they are like a child (and since I have one that young, I can totally relate, they want what they want and cannot comprehend any reason they should not have it, exasperating, since they will just keep repeating "but I want it" no matter what you say).

No matter the stage of PD one is dealing with, I think one of the most helpful things I have read is that we need to remember it's the disease, not the person. That really helps take the venom out of mean things they may say, the craziness out of their illogical "plans", and when you want to jump off the deck for lack of sleep when they are up at 4am, yet again, you can look at that person you so love and remember they literally cannot help it, and that they would give anything to not have PD.

Go back through previous posts to see if they help answer the questions you have now, and if not, post it here, someone is bound to have been through what you are going through.

Also, as a caregiver you need to remember to take care of yourself, easy to say, but hard to do. You cannot help your dad if you have fallen apart yourself. Whenever he sleeps, try to grab a few winks yourself. If a family member or friend offers to help, take them up on it and get a break. You can also hire a sitter if you need to. Just pay attention to your body as well and take care of you as best as you can. Annwood has some scary statistics on the toll caregiving takes and the sooner you take action to combat the fatigue, etc., the better off you will be down the road, and the better able you will be to help your dad.

Good luck and welcome.

By annwood On 2009.01.04 09:33
Hi, Tara, and welcome to our forum. I am so sorry that you are going through this and hope that you will allow us to help. You can say anything, and I mean anything, here. We don't make judgements and anything you say has probably been said by one of us in the past.

It certainly sounds as if your father has PD dementia - it is just awful but it does show up in about 40% of PD pts when they reach the later stages of the disease. Lurkingforce is correct - you can not reason with them so don't waste your energy. Like a child you have to be firm and just tell them what they need to hear. They will of course forget what you said in the next 5 minutes. They may say hurtful things to you - try not to take it personally.

As for the duration of his PD it really doesn't matter. There is no cure and it is progressive. It is said that 85% of the dopamine cells are destroyed by the time the pt shows any symptoms.

I have walked your road and I know how lonely and frightening it can be. My husband died a year ago this week from PD and PD dementia. He had been diagnosed for 17 yrs. I hope that you will stay with us and allow us to guide you through some of the problems.

By bandido1 On 2009.01.04 12:02
Tara: If you have been browsing through the posts you probably observed there are some patients with Parkinson's adding advice when we consider it appropriate. As has been said, no subject is off the table in this forum and that includes frank and and sometimes humorous responses from those of us who try to lighten up what can otherwise be depressing. I also participate in a couple other patient oriented forums and occcasionally can steal ideas, and answers to caregivers questions from those sources. That's not why I use Bandido as an ID--he was my favorite Jack Russell Terrier who is patiently wating for me to finish my mission on this earth. Welcome and God Bless! Bob C

By lostdaughter On 2009.01.04 18:43
Hi Tara, It sounds like you & I share a common concern about our parents at this point in time. I just joined this forum a couple of weeks ago myself & will insist my mom be tested for dementia when we see her neuro this week. She got consumed with some repairs that needed to be done at our home about 6 months ago & just about drove me crazy about it. She was using the Neupro patch which helped a great deal with her mobility but she was doing things like driving & going shopping that she shouldn't have been doing alone. I found the forum right before Christmas, right after being told Mom needs 24 hour care. My sister has stepped in & is trying to do it all but I fear that won't last long. I haven't handled the stress of the past few months very well so I've stepped back & do whatever sister asks but have been staying out of the way for the most part. As you've already been told, there are great people here who have lots of first hand experience in dealing with PD. Please stick around & keep us posted on your situation.

By Tara On 2009.01.05 01:02
Thank you so much lurkingforacure, annwood, bandido1, and lostdaughter (man, can I relate to that name!). I'm glad to see that you are all so supportive of each other here, and so much good, practical advice is given. At first, I didn't want to join any support groups or forums, because I thought it would be like Alcoholics Anonymous (another group that, alas, I have more than a passing familiarity with, if you know what I mean) -- that is, a bunch of miserable people talking about nothing but their problems, with no real solutions offered by anyone. (At least, that was MY experience with AA.) This forum is nothing of the sort. Very helpful.

Dad is actually a pretty good guy. At the time of my writing of my original post, we'd actually had a huge fight, and I was crying. But now, he's very cooperative. After actually opening a paint can and proceeding to get paint all over himself and the walls, he admits that he needs someone else to do the painting (man, I was LIGHTNING QUICK in getting that paint can hammered shut and on a high shelf in a closet!! Lord help us all!! C'mon -- you gotta laugh!)

Mainly, I can be very grateful that he's always been very good at following rules. He was an Eagle Scout when he was young, and it has stayed with him. All I really have to do is just be nice to him, and he'll cooperate. It was actually HIS suggestion that I take the car keys.

I've been living with my father for 3 1/2 years, and, ever the nerd, got myself informed about PD since I learned he was diagnosed -- that is, until I would feel serious depression set in, and then I would have to quit for a while. I could take it only in bits and pieces, and then had to learn the warning signs of depression and call it a day and go out. By now, I have disabused myself of all notions that he will get better, and better yet, disabused myself of any notion that it is required of me to give my heart, soul, blood, sweat, and tears for him. He's my dad, I love him, but I WON'T die for him. I always remember where his life ends and mine begins. And if anyone wants to disapprove of me for that, I just remind myself that there's nothing they can do about it anyway (except take care of him themselves, which, of course, no one ever does), and since when did other peoples' approval pay my bills or lower my blood pressure or help me sleep at night, anyway? I'm doing the best I can, and that's the best anyone can do. I'm saying all of this because I think it's vitally important that we realize that a relationship is a two-way street, and if one is giving waaaay too much, it only builds up resentment, anger, hostility, and, ultimately, indifference on the part of the one who is giving too much. And ultimately, both parties suffer. You're not doing your loved one any favors by letting all this negativity build up.

Thank you all again. Your interest is very heartening.

By lurkingforacure On 2009.01.05 06:39
Tara, I had to reply to your comment about relationships being a two way street. Normally, that is true, but with PD you do not have the luxury of dealing with a normal situation. I would love to have the "normal" relationship with my husband that we used to have, but that is no longer our reality. PD robs us of that, as well as so much else.

I guess I am trying to say that although you are right if the situation were a normal one, it doesn't work for PD. Don't have expectations otherwise, that your relationship with your dad is a two-way street, and that way you won't be disappointed when he acts in a way that is hurtful, or says something mean, or just generally does not do what you would expect in a "two way relationship". They cannot help it. More importantly, they would do anything to not be that way. Remembering this may help you as well. Good luck.

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