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MamaGull

To our 'First-timers': WELCOME

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Hello, I am a caregiver for my 70 year old father who has been diagnosed with PD for 20 years.  I think we are approaching the late stage of the disease.   Currently struggling with personality changes (which I attribute to the agonist - he takes Mirapex) and struggling to get him the care he needs.  We had him in an assisted living facility and he took it upon himself to move himself out into an apartment and hired a random person to work and live with him (she's a 20 year old student and she's NEVER there).    I look forward to searching the forums for information.  

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Hello everyone, I am an undergraduate business student working on a final project. My team is trying to help patients and caregivers have better insight into how their symptoms are progressing. We would really appreciate if you took the survey below to help with our research. It should only take about two minutes.

 

Thank you so much!

 

http://kwiksurveys.com/s/9tU3iDdZ

Edited by gglass

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Thank you for the welcome. My husband was diagnosed in 2008 and I can't believe how this has all changed our lives. He has now started with Lewy Body dementia, often does not recognize me and also hallucinates about seeing his father and other people in the room. He used to be a fantastic surgeon and now he is reduced to not even knowing how to use the remote control for the TV.  He has become very needy and gets upset when I am not in his line of vision. I can't even quilt anymore because I have to do some of that in the other room because of the mess it creates.  We have no family around here, our two daughters live out of state so it makes it very difficult to even go and buy groceries.  Amazon must love me because I order from them on a daily basis including some of the groceries. I am looking forward to reading everyones experiences and tips.

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I am so sorry! I also know how you feel. My hubby stopped taking his pd medicine last week. He was an electrical engineer and now can't figure out the tv remote and can't use a smart phone. He still thinks he can do everything and thinks it's just me not allowing him to drive, etc. people tell me to hire help, but he sent the last two home early, before I could even get the grocery shopping done!  I feel strange when I realize the my social life is at the grocery store!

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Oh, one more note. Amazon feels like Christmas and I'm thrilled that UPS delivers on Sunday!  Find pleasure in tiny things.

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Hi Jetje,

Welcome.  The social isolation is something, isn't it?  We're still at the earlier stage, although most friends and some family have disappeared.  It's because of the discomfort of not knowing how to react, I expect.  DH is physically fine, just stiff and lumbering.  The mental issues are at the forefront.  I know what you mean about the following from room to room.  Luckily I knit, so that is easy to calm myself with.  Lots of socks!  Very small, portable, and not obtrusive.  Have you ever tried a special quilting frame?  I have quilted in the past, and found this amazing small and no fussy frame that works in small places.  I gave mine away 3 years ago to a fellow quilter (I'm putting a link at the bottom for the frame, see if you are familiar with it).

Anyway, I am glad you found the site, drop in, most CGs understand about LBD.   It's no fun...

http://www.joann.com/floor-quilt-frame/4794046.html

 

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On March 20, 2017 at 6:28 PM, jetje said:

Thank you for the welcome. My husband was diagnosed in 2008 and I can't believe how this has all changed our lives. He has now started with Lewy Body dementia, often does not recognize me and also hallucinates about seeing his father and other people in the room. He used to be a fantastic surgeon and now he is reduced to not even knowing how to use the remote control for the TV.  He has become very needy and gets upset when I am not in his line of vision. I can't even quilt anymore because I have to do some of that in the other room because of the mess it creates.  We have no family around here, our two daughters live out of state so it makes it very difficult to even go and buy groceries.  Amazon must love me because I order from them on a daily basis including some of the groceries. I am looking forward to reading everyones experiences and tips.

I hope what I have to offer helps. My husband has been diagnosed for 20 years.  He started with hallucinations about six years ago, then Lewy body symptoms kept coming.  The last three years have been the most difficult.  He has been totally bedridden for the last three months and is now on hospice.  I understand about the grocery store being the only outing to look forward to.  I too have had to give up quilting and even knitting.  I do have a daughter close, but with her commute time, she is away at work long hours, but on Saturday she sits with him for a couple of hours while I grocery shop.  My only clothes shopping is online.  I even buy cat food on Amazon.  I have a kind neighbor who will sit with him if I need to go to the dentist or Doctor.  He is someone who used to work with my husband and his father-in-law had Parkinson's, so he knows how to handle things.  Don't be afraid to ask a neighbor for help now and again.  People are generally kind and glad to help if asked.  His doctor authorized home health care during the last three years for physical therapy, occupational therapy and speech therapy.  With that comes an aide for one hour three times a week.  I was able to run to the grocery store in that hour. Home Health Care is limited, but helps. You can also hire an aide for more time if needed through the home health agencies.  Now DH is on hospice.  A nurse comes twice a week and an aide every day to change him, give bed baths and shave him.  I would recommend that you utilize all the help available.  You should also contact the Division of Aging in your area and see if there are any other programs available.  Even with the help, I can't get back to my quilting, but the help is appreciated.  Doing everything alone is too hard.  If you haven't done so already, get a trust, will, power of attorney and advance directive in place.  Two weeks ago he slipped over the side of the bed and i couldn't lift him back in.  I called 911 and explained the situation, that i didn't want him transported to the hospital, just lifted back in bed.  There is no charge for lift assist.  When they arrived, I had to show them the advance directive with DNR,. They told me otherwise they would have had to put in an IV and transport him to the hospital.  Hope this helps and I wish you the very best.

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