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 First post-new member 
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post First post-new member
Hello Everyone. I have only even known about this site for a few days and am so relieved to have found you all. My father has been recently diagnosed with LBD after a last ditch trip to Mayo Clinic. After seeing countless health professionals in his home area with no diagnosis other than " normal signs of aging" , my folks decided to try Mayo and got their answer. My dad is 75 and had always been very active. Classic LBD symptoms starting creeping in over the past couple years and only in the past 6 months has he started a rapid decline. The biggest problem he has now is the inability to get around without falling. He has had many severe falls lately and keeps injuring himself. I also will add that he only has one arm (lost in a farming accident in 1978). When he falls, it is very hard to help him up due to him only having the one arm. Charlie has suffered multiple head injuries over the years due to horse riding accidents. Yes, he is/was an active rider for his whole life up to last summer. The one arm makes the use of a walker impossible and his failing coordination makes the use of a cane impossible. I could go on for hours but I really just wanted to say hello and begin reading all of your posts. Thank God you are here.

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Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Tue May 06, 2014 7:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: First post-new member
Oh my, I am so sorry, you do you a tough situation. It sounds like maybe a wheelchair may be in order??? Have you talked about the extra mobility challenges with his dr.? I know it's better in some ways to keep him moving on his own steam for as long as he can, but If he breaks one or more bones in a fall that will make the situation even worse.

My dad was doing a lot of falling just before his big decline. Like many folks with LBD, he didn't want to use a cane or walker, so it didn't even matter that he COULD use them, because he often chose not to use them. My sister and I knew that it was only a matter of time before he'd have a more "eventful" fall, and sure enough, that did happen. He fell coming back in his back door, at night, when it was about 30 degrees F outside. He landed with the top half of his body in the house, his legs totally paralyzed outside the house, with the storm door pushing against his butt. He tried to get himself up but couldn't, but at least he kept his cell phone in his pocket and was somehow able to get it out of his pocket and call my sister. By the time she got there he was extremely upset, cold, and disoriented. She had to call an ambulance to get him up off the floor and to the ER to see why his legs wouldn't move at all.

Thus, it's really important for someone who has mobility issues, balance issues, and dementia issues to NOT be home by themselves (we didn't know my dad had LBD or Parkinson's at this point). If he hadn't had a cell phone it would have probably been a day before he was found. Is someone else in the house with your dad or checking on him every few hours? Good luck, come back as often as you want. There are many caring people here who have been through this journey, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 06, 2014 8:11 pm
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: First post-new member
Thank you for the welcome and the caring advice. My Mother lives with him at home and is just starting to accept that he has LBD and being a very active person herself, hasn't realized he can't be left alone. Your story about your father's fall is SO much like my Dad's last fall. My mom made a 15 minute run to the grocery store and told him to sit still and not go anywhere. My dad decided to try and take the long walk down the long driveway of their house to the street mounted mailbox. Of course he fell and suffered a laceration to the head as well as an undiagnosed knee injury. He couldn't get himself up But was lucky to have his cell phone in his shirt pocket. He somehow had the where with all to call a neighbor who happened to be home and was able to help him up and into the house. Of course my mother arrived home to all the commotion and a rather large pool of blood on the driveway. I am afraid this is just one of many to come and one time it result in a much more severe head injury. So hard to grasp this thing at this early point. We will need lots of ideas/advice. Thank you again Lynn

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Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Tue May 06, 2014 8:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: First post-new member
It does sound very similar, doesn't it? I'd gotten a few calls from neighbors prior to this telling me my dad had fallen, couldn't get up, and he'd call them and ask them to help him get up. There always seemed to be a logical reason why he fell so until this time where he fell half into the house, I wasn't seeing that there was a bigger picture.

Is there a support group around there that you or your mom could attend? That was also a big help to me when my dad was still alive, after I knew he had dementia. I needed a lot of moral support and one of our local dementia groups had a lot of really caring people, so I went to that monthly and had the wonderful support of this forum. I honestly don't know what I would have done without both. Would it help your mom to join this forum too? Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 06, 2014 8:42 pm
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: First post-new member
I plan to help her sign up as soon as she is ready. I will investigate a group in her area of southern Wisconsin. Thank you again for the caring advice.

_________________
Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Tue May 06, 2014 9:29 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 92
Location: Hawaii
Post Re: First post-new member
Hi Coopman 12, welcome to the Forum! There are a lot of resources to explore on this site.
Lynn's suggestion about getting a wheelchair is a great one. Given your father's "medical necessity" for a wheelchair, due to his mobility and balance problems, Medicare should pay for this. His doctor here (ideally a Geriatric Internist and/or Geriatric Neurologist) could prescribe it. Good idea to get one with a neck rest, as eventually he'll need it (and some wheelchairs don't have the attachment for it).

What helped me out in taking care of my mother was to also buy a light (~ 8 lbs) transport chair. This came in very handy for taking her to dr. appointments, as the wheelchair was too heavy for me to put in and pull out of the trunk.

My mother lived in the Northwest Chicago suburbs. If that's anywhere around you, let me know if you need any recommendations for doctors (I don't have many! After she was diagnosed with the vague "dementia", I later diagnosed LBD. It was confirmed by her Geriatric Psychiatrist). Your mother is fortunate to have such a concerned son. Stay strong!

_________________
AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Tue May 06, 2014 9:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: First post-new member
Good point about the weight of wheelchairs - I could barely get my dad's in and out of the trunk of his car. But, he become so disabled so fast that he needed to go on the accessible bus via lift while he was in his wheelchair within a very short time of getting the wheelchair. Hope for the best, be prepared for the worst. LBD symptoms can get worse in a flash for many of our LOs. Have a peaceful night, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 06, 2014 10:10 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 292
Post Re: First post-new member
Welcome to the forum Coopman! As you can see it's a great place to get advice and share experiences with others who have been or are there.

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon May 12, 2014 12:46 am
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: First post-new member
Thank you all for your posts and advice. I will be reading and learning as time goes on. I just spent the weekend with my dad and he was actually pretty good compared to how he has been over the past few weeks. The fact that several of his kids and grand kids were there with him and my mom seemed good for him. I think he gets worse when he is not engaging regularly.

_________________
Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Mon May 12, 2014 4:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: First post-new member
Enjoy and savor the good times. There will be good times, even at the end for most of our LOs, even though they become more sporadic and for shorter periods, but they do tend to happen. I know it lifts my spirits when my adult kids come home, and I am not ill! If having close friends and family visit helps your LO, maybe you can schedule people's visits so there are more of those good times. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon May 12, 2014 4:46 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 756
Location: LA
Post Re: First post-new member
Coopman12, I have been where your mother stands at this time and I did so much appreciate our adult children watching "my back" as I cared for my husband, Mr. Bobby. I have re-read your previous posts and I need to first state that the family visits are such a blessing. Everyone here will agree with me on that point, but now I want to add another thought to keep in mind. [Isn't there always a 'but'?] Forgive me if if sound like a trouble maker, I do not intend to do that I just want to mention something for the future. First, I want to say I am so pleased that you have the diagnosis from Mayo. I could not be sure about Mr. Bobby until Mayo in Jacksonville identified LBD postmortem.

The thing I am concerned about is this: Have you studied the remarks about Show Time?

I found that after a wonderful day with an outing or company at home, the evening and nights were more difficult. From the happy excitement or was it that the patient with dementia works so hard to put on a good front he/she is exhausted. If extra sleep is all that is needed, let it be, however, if the caregiver notes that more troubling results appear then the visiting needs to be more tightly controlled. As time went on, friends and family understood when I began to put a time limit on personal contacts.

I was amused with one of my nieces after Mr. B. passed away and there was a festival in our town where all the extended family had always been invited to park in our yard because we live just two blocks from the festival grounds. During Mr. B's. illness, I asked them to find other places to park. They understood but the next spring after his death in November when it was time for the festival I received a phone call from a niece asking, "Aunt Dot, are you open for business?" Yes, life does go on and I told her to come on down.

Everything you can learn to help your mother will make it less stressful for everyone concerned and I do hope you will accept this as a help to understanding because Show Time is real with many LBD loved ones. I'm always concerned when the patient still lives alone and I have encouraged the adult loved ones to go spend a few days so they can see what his/her condition is really like. Your mother is there so she knows how he is doing. Give her my concern, please.

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Mon May 12, 2014 8:16 pm
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: First post-new member
Thank you for your insight Dorthea. I completely understand what you mean about putting on a "show" for visitors. I don't know if this has occurred this time but I will talk to my mother tomorrow to see how Charlie is without visitors. On the subject of my parents still living alone and remote from the rest of the family, do you have any advice o. How to get the process going to move them closer to the family? Currently they live in a farming area about two hours north of my home and about three hours north of my three siblings. We really want to get them closer to us but my dad isn't even considering the discussion. My mother agrees that this would be a smart thing to start planning. I guess the diagnosis is still too fresh. Any advice would be welcome.

_________________
Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Mon May 12, 2014 9:58 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 756
Location: LA
Post Re: First post-new member
Oh My, I am not the one to offer any words of wisdom on that however there have been many lively helpful discussions in the past about this very topic. I'm sure you will hear from some as well as hearing new ideas. Several stories come to mind of successful moves as well as some who wish they had made the move. You will need to weigh all answers carefully, trying to make sure what will be the least stressful. Oh, this is one hard discussion. I must yield to others for this space.

Bless you and best wishes for all that you are doing.

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Mon May 12, 2014 11:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: First post-new member
Hi - re: trying to get your parents to move closer to you, I can tell you what wish I'd done in retrospect. Your situation is different in that you have other siblings who live even further away from your parents, but here are some ideas for what they are worth:

1. Get all your siblings together and come up with what you all WISH they'd do. Having 4 of you on board with one plan will help.

2. Whomever your parents most listen to, trust, whatever, have maybe 2 of them meet with your parents to talk with them about moving closer. Having all 4 adult children meet with your parents at the same time may feel to them like you all are ganging up on them. Perhaps in your own family that won't happen, based on how your family's communications is established, so if you think it will be comfortable for your parents for all the adult children to be present, by all means do that.

3. Have a written list of how having them closer to you will help your parents. Explain clearly and logically how much you all can help them if they are closer. Explain to them what you all will not be able to do if they remain where they are.

4. If they are way out in a rural location, it's only a matter of time before one or both of them will HAVE to move due to driving/not driving issues that are bound to crop up. (not being able to get to dr. appointments, grocery shop, etc.)

5. Maybe this one should be #1 - of the 4 of you, is it possible to have them move in with any of you? Is it possible to add a mother-in-law type apartment to one of your homes?

As Dorothea said, this is NOT an easy conversation. BTDT. I had wanted to move my dad to an ALF near me before he had his huge overnight decline and landed in the hospital, rehab, then an ALF 40 miles from his home, 540 miles from my home. Looking back I wish I'd moved him before his big decline but I didn't and 3 weeks after our last conversation about moving him to VT, it was too late. I ended up with a heart condition from the commuting $2,600 miles a month (or more) and all the stress of his medical care, his house, his finances, etc. My dad would not have had his good friends visiting him as often had he moved to VT, and that is the ONLY reason I agreed to have him stay near his home. My health paid the price, plus I had to leave my own family every 2 - 3 weeks to drive to see him, oversee a construction job at his house, meet with drs, attys., accountant, etc. So, when people on the forum tell you to take care of yourself, there are concrete reasons for doing so. If having your parents closer reduces your stress and helps you all care for them better, they may just have to move. Good luck. Let us know how it goes. Your experience may help someone else too. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue May 13, 2014 8:40 am
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Joined: Tue May 06, 2014 7:06 pm
Posts: 13
Location: Chicago Suburbs
Post Re: First post-new member
To Dorthea and Lynn, thank you for your attention to my questions on this relocation situation. My siblings and I are all of the opinion that they need to move closer so at least we have that common goal. You are correct Lynn in suggesting that a couple of us talk with them instead of all four. My little brother is the closest to my father and is also the executor for their estate so I think he needs to be there. I guess I would be a good second person to have the discussion. I think the list of benefits of moving them south is a smart plan so that we can have positive answers when my dad challenges our positions...and he will! Lots to consider. I will keep asking questions here, sharing my experiences and thank you all in advance for your caring replies.

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Mark, son of 76 yo father just diagnosed with LBD and some signs of Parkisonism.


Wed May 14, 2014 11:19 am
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