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By Maggie On 2009.06.20 15:17
My father-in-law is 80, and was diagnosed PD a couple of years ago. We knew something was going on, but it did not become obvious until the last ten months. He is a widower and lives in another state.

We were there a month ago. He still has good posture, but he does twist differently to move or to look around. His voice is softer. The only tremors I see are his hands when he reaches for something. He gets out of breath just from moving around sometimes, but he still has no trouble walking up or down stairs. His driving is okay --- not too much different than others his age. It took a lot of work for my husband to help him get some records organized. My husband had to repeat things several times in depth before his Dad felt he had the info grasped. Part of it is the obvious effort it takes for him to concentrate, and part may be he knows he wants to maintain things in his organized way.

I have looked around the web a lot to get up to speed. I still don't have a good feel for a likely progression. It seems some PD progresses quickly and other moves more slowly. He wants to live where he is as long as is possible. He has one good neighbor who is a good friend. Other than that, close connections are all long-distance.

I know we will call a lot more often until we make another trip in several months. Any advice on what to expect during the next year, particularly things to watch for during the next several months would be appreciated.

By LOHENGR1N On 2009.06.20 16:14
Maggie, Welcome to the forum, I'm sure many caregivers/partners will answer with great advice for You. I'm a patient in My 23rd year of living with P. D., 56 turning 57 later this year. Best advice I can give right now is to find out if His city or town provides calls to the Elderly, infirmed, house bound or disabled. (most do for free call a couple times a day to check on them). Things can happen fast in life even without Parkinson's Disease thrown into the mix. What to look for? Unless You take a crash course in Neurology specializing in Parkinson's and even if You did good luck. We Parkies can present very different when We're being observed than in Our "normal" daily routine. Most of the caregivers/partners here will tell You heck We patients don't even realize how much the disease is affecting Us. Probably the best You can do for now is to make a list (while fresh in your memory) of posture, walking gait, eating, stability while standing, getting up from chair, things that you can't see while making phone calls. Then compare next visit. (Some of these on the list may sound crazy to You but remember He's elderly with Parkinson's if He's having trouble rising from chairs that translates to trouble in the bathroom on the toilet where a fall and head trauma would be disastrous). I'll leave the good advice for caregivers here to give and guide You. again welcome, take care, best of luck and hang in there.

By Pearly4 On 2009.06.20 17:46
Would he tolerate the involvement of your Area Council on Aging? They may be able to help you evaluate what he needs or might need in the future.

Can he take care of his own meals - preparation, buying, eating a balanced meal, preferably without setting the house in fire?

Can he handle his own laundry and dispense his own medications without overdosing or msising multiple doses?

Money will become a problem if it isn't now (seems to become a problem for a lot of non-PD aging) -- is his spending erratic in that he's donating lots to the television evangelist but not paying pills or visiting the local gambling casino?

Talk to his friends and neighbors if he allows it -- see what they think and what they've seen on day to day basis. If you aren't there daily they may be a better judge of his capabilities. You might have to disguise your questions as in asking for their help in letting you know if they see changes -- some wouldn't want to "squeal" on him now, but might call if they note changes.

By Maggie On 2009.06.21 09:54
LOHENGR1N - Thanks for the info and tips. I will make some notes about things we observed. I also will check on the phone call service. I worry most about him having a fainting spell. I know that happened at least once before we knew the diagnosis, but it also was when he was not living alone. We mentioned signing up for an alert system, but he wasn't reay to go there, yet.

Pearly4 - Right now I think he will cover basic chores okay --- and probably rely on frozen dinners. I hope he will continue going to his rehab exercise each week. For now I know that means he is driving, but it also will give him a chance to pick up some groceries and take-out food. A reliance on frozen dinners would cause my appetite to drop.

He is being fairly diligent about his meds, but I know I was not always good about being 100% on daily Rx's. At this point, if he forgets one round (he is on 3 times per day) will symptoms occur that will make him realize he missed a dose?

I am not as worried about the finance/donation/etc., problem. It would reflect a significant personality shift/decline for him that I think would be evident in other ways to us. He also has good insurance coverage.

I am pretty sure his neighbor knows about his health and will be willing to help check on him if we are worried. We visited with the neighbor when we were there, but it was not at a time when we could engage in that type of conversation.
That probably should be a phonecall we make soon, and not wait until our next visit. I worry about what happens when he has a bad day. I know that will happen. He refers to good days and bad days, but I don't think we witnessed what he has experienced as a bad day.

Thanks, again for the tips. I just hope he can maintain his independence for at least another year or so. We are the only immediate family support for him. My parents are older, and one of them is no longer driving. I have siblings who can help there.

By susger8 On 2009.06.21 18:41
Maggie, you should be aware that PD, and also PD meds, can cause a person to do things you would never expect. In particular, the dopamine agonists Mirapex and Requip sometimes cause obsessive behavior. Gambling, porn and excessive spending are common. A person can fritter away hundreds of thousands of dollars before anyone realizes it. You will want to keep an eye on his finances.

In my dad's case, he didn't get into any dangerous stuff, but he was not paying his bills, and he forgot to pay his quarterly estimated taxes for a whole year. That's when I started to take over his finances. Otherwise I think he would have had some of his utilities shut off for nonpayment.

I don't want to sound too negative, but it's smart to be alert. Even a person like my dad, who was always ultra-competent at everything, can reach a point of not being able to handle everyday things.

By WitsEnd On 2009.06.22 13:47
The one advice I would give is that each day can be a new day. When dementia first starts it's not like an on/off switch that gets thrown. It's more like the electricity starts browning out here and there. You won't notice it unless you are looking closely at the right time.

I first noticed dad acting strangely at the hospital when mom had her stroke. I noticed he looked a little panicked when he was looking all over and didn't realize I was still standing right next to him. I thought that was odd, but chalked it up to stress about mom.

It wasn't until he had an episode of hallucinations/dementia where he thought the floor tiles were moving, somebody was breaking into his truck, he didn't recognize his own reflection in mirrored closet doors and said a man was trapped in a sliding glass door that I realized what was happening. The next day he was fine and could carry on a conversation as though nothing happened.

Nighttime is usually always worse for this kind of stuff.

By Maggie On 2009.06.22 15:51
Thanks, everyone, for more feedback. I am on a day off from work and have done a lot of reading. I understand more about the complications, symptoms and physical, mental and emotional side effects of the Rx's. There are so many things to worry about. We only recently lost my mother-in-law. We just don't know how he will adjust to being independent, but alone for the first time in almost 60 years, with PD. I really appreciate your help. I is such a help to have the opportunity to learn some answers and learn what questions need answers (or can't be answered) that this forum provides.

By Tara On 2009.06.22 19:22
Hi Maggie,

I don't know if it will help, but if it will, good.

When I look back on Dad's behavior pre-diagnosis, since PD is present for several years before diagnosis, the first odd thing I noticed (5 1/2 years before he was diagnosed with PD) was that when he was helping me move, he sat in my living room, rigid, straight upright, like he was "at attention" in the military, except he was sitting down. He also had a "surprised" look on his face and in his eyes, although he was looking at a blank wall. But when I talked to him, he shifted immediately back to normal like nothing was out of the ordinary.

Very odd, but I had no knowledge of PD (ahhh, isn't ignorance bliss?!!), and I didn't know what to do. He repeated this behavior the next time he helped me move, about 6 months after his diagnosis but 3 1/2 years before he was assessed with moderate dementia.

Like I said, this may not help, but it won't hurt for you to know.

By jude24 On 2009.06.26 21:23
Hi Maggie,

It might be a good idea if you can get put on his bank accounts and monitor financial things online -- including credit cards. That way, not only can you keep tabs on what is going on that maybe shouldn't be, you can also step in if he gets sick and can't pay the bills. Try to get as many things as possible set up for bill pay or something like that.

He might like the security of knowing that you can take care of things "if needed" -- no need to point out that you might be monitoring things as well.

All the best,
Susan


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