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I am officially a caregiver for my father who has a confirmed diagnosis of Parkinson's. If anyone has tips or suggestions on how to do this well I would appreciate it. I work full time and my job is demanding. It really is up to me as my sister and brother live out of the country. All ideas are greatly appreciated!

GreatNani 8 Oct 10
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My father in law had parkinsons for years, but his decline was very slow and right to the end he could wash, dress, get food ready and all usual stuff of living. He died 'naturally' of a heart attack.
The prognosis is not good ... but may not be as bad as you imagine.

So far he is doing well. So I suppose we will have to wait and see.

@GreatNaniconsider doing a video so you have a record of how and what your father does now .... because you are there every day, you may not notice any decline till you refer back.
Others have already mentioned about getting paperwork sorted
Hopefully your father will be ok for years yet, but you need to be prepared for whatever happens.

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If you are in D.C.check NIH and support groups around you pm me

bobwjr Level 10 Oct 10, 2019

My daughter works at NIH. She is gathering information for me. Thanks!

@GreatNani anytime

@GreatNani also Michael Fox foundation may have more including support, since he suffers from that could be a good resource

@bobwjr It is an excellent resource. I found it while searching online

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Have him join a Parkinson's Boxing club. It will give him folks just like him - to give him peer support. Plus it's proven to be helpful.
[rocksteadyboxing.org]

You're well set if you have people delivering groceries and doing some housework.
I don't know how advanced his Parkinson's is - but you'll also eventually need a home health aid - to help with showering and dressing.

His Doctors should be able to point you towards most of the services. Or ask to meet with the Social Worker at the Hospital he is serviced from. They should know resources too.

One of my sister's has a husband with Advanced Parkinsons so we've been working the issue from the East Coast with her for a number of years now. *She's in CA - so it's hard - we can't really help out much.

Right now we've been looking into a fall monitor.
They now make bracelets that can detect a fall and set off an alarm - and then summon help if need be. (If the alarm doesn't wake the partner for instance).
(They installed a lift to their home - and put in a handicapped bathroom in the downstairs). So he has a bedroom there now. But that doesn't help when he has a fall overnight and she's upstairs.
They had to stop sleeping the same bed because he was kicking her in his sleep.

Also get a really good Medication box - with at least 4 slots so that med time is made easy.
A visiting Nurse can probably teach you both to set it up properly so that medication mistakes don't happen. (That tends to be the reason for a lot of hospitalizations). Along with not enough fluids.
UTIs are really hard of folks with Parkinsons.

Know that there are now brain implants that may help with the tremors. (It is surgery though so weigh the pros and cons).

PM me anytime and I'll help if I can.

Thank you! That is all wonderful information. I saw the boxing on a website about Parkinson's. He is very interested in that.

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Some tips you should know:

  1. Type up a list of all his current medications, allergies, and diagnosed problems (be detailed!!) Keep this list up to date!! Have this list in a convenient place. Carry copies with you.

  2. Get your paperwork in order: Health Care Proxy / Power of Attorney

  3. Decide now what advanced directives you, your siblings, and your father want. What measures do you want performed. The exact paperwork required is dependent up your state. You may want to consult his doctor with these regards. Once those decisions are made, keep the paperwork with him. In most emergency situations, unless the paperwork is present (and current, in some situations), it is assumed that all heroic measures are to be performed, despite what family claims. These advanced directives are what allow providers to disregard what is called presumed consent for treatment.

  4. Prepare for the eventuality of your father being wheelchair bound, and perhaps bed bound. Planning ahead for accessibility is key.

  5. Consideration for placement into a skilled nursing facility. There may come a time where his needs are too much for you or your sister. Planning ahead now will make that process much easier. As much as you don't want to remove him from his home and place him into a situation where strangers are taking care of him, it may be unavoidable. Planning ahead will be a great help in avoiding some common pitfalls.

  6. Consider hiring help, such as a home health aid. There are a bunch of resources available to inform you on what services are provided, what you or your father may need, and how to go about getting these services.

Thank you so much! That is very useful advice.

You can also get a reconciled drug list from tthe dr at each appt. Make sure to ask for a print out at each appt, if its not already in you visit summary

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Adjustable hiking poles help prevent falls. Even using one hiking pole makes a tremendous difference.

How to fit hiking poles

[video.search.yahoo.com]

He has finally agreed to that! Thanks!

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Sorry. None of my friends or family have been thusly affected, except my grandfather was bedridden by diabetes. Grandma took care of him, but she didn't work. I was young and don't know how she survived. I think their kids helped with money.

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Oh my nani you must have some help. If you are on the md side of the border you can check with the state.

I am in DC. ANd they actually have a lot of help here.

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Can you describe what level of care you are giving him? The opinions and ideas would probably flow better from there. IE, Does he still drive or is he limited to the house only? How long has he had it?

He just got diagnosed. He does not drive anymore but we live in DC so he was taking metro and now he takes Uber if I can't drive him. Right now I handle all his medical appointments and I do all the house things. He is fine to dress himself and heat up food. He even goes to PT by himself but I can see that that will change soon.

@GreatNani First thing I would set up a GeoFence on his phone. Look it up. You may be able to do this free if you both have the same or similar phones. You can set it so that any time he leaves the house... You get a text. And, at any time, you can see on a map where he is as long as he carries his cell phone with him.

I used to make my mom carry hers... I don't care if she was just heading out to the mailbox. Especially important on stairs. It's peace of mind if they have that on them at all times.

@RiverRick that's an awesome idea! We have different phone plans but I will look into it

@GreatNani You can probably find an app to download on his phone that notifies you then. Even if you have to pay a few bucks it gives GREAT piece of mind. I have a friend who put a GPS tracker on his dad's car after he called one day lost about 100 miles away and didn't know where he was. This allows you to know before there is a problem.

Just a thought.

@RiverRick that's a great idea. I am getting him a new phone so this is the right time.

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Your state may know. In my state of Missouri they have in home healthcare workers who come in a few hours a day and do things for these people. They did this for my stepdad before he ended up in the Nursing Home. The idea is to keep a person living on their own for as long as possible. If you can find this it would lighten your load.

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Contact your State...they may know of things like "respite care", and/or people who will come in & make lunch/do light chores, and so on. Unless you ask, you will not know!

Yes that is true. RIght now I have house cleaners and get groceries delivered to ease some of the chores.

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Having been the sole caregiver for my grandmother (probable Alzheimer's disease), my primary bit of advice is try to get help, don't do it alone.

Thank you. I think that will be key.

@GreatNani Twist some arms to get one of your siblings to help. Or some trusted person, family or otherwise.

@bingst they are great and planning on coming regularly. Their children are a lot younger than mine, mine are grown and I know they won't be here as often as I will need them. So I will be farming out as much other work as I can like cooking, cleaning etc. And my kids can help

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