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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post New Member
Hi.

I just joined today. My father has had Parkensons since he was 75. It started with his left hand shaking. However, he soon started getting lost driving and confused. His doctor eventually figured out he had LBD. My mother was taking care of him in their house until he was 79 at which point she had a stoke and could no longer care for him so they both moved into assisted living. The story was we were doing it for my mother even though he was the one that really needed it. The problem was he was in denial and wouldn't admit anything was wrong with him. Now he is 83 and is in pretty bad shape. He pretty much can't walk and does not make sense when he talks. He is incontinent and can't really even feed himself. He falls frequently, but doesn't seem to get hurt. He was historically in great shape. He worked out every day in a gym until about 78 and had an excellent diet. He was never really sick a day in his life or in the hospital. He has always been his ideal weight. This may work against him at this point as he is suffering so much that I don't think I want him to live to be 100 (like his father did)

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Mon Mar 03, 2014 12:18 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 325
Post Re: New Member
Hello Number1Son and welcome to the forum. Sorry to hear that you have to deal with two sick parents at the same time. It's never easy to watch our parents get old but I think it's doubly difficult when they're both sick at the same time! I do remember once going up to the 9th floor on the hospital to visit my Dad in ICU and then down to the main floor to sit with my Mom in emergency... I thought I might go crazy but we did make it through that on. If you have any specific questions about LBD post under that topic on the forum or make a new topic. You can gets lots of feedback here from people who know what it's all about. Hang in there!

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


Mon Mar 03, 2014 4:25 pm
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
I guess one of my interests is how much longer will this go on. It is been 8 years for my father since the start, but he was very healthy when he got it. I realize everyone is different, but I would be interested in the statistics. We are Christians so I am very much looking forward to heaven for him.

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Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Mon Mar 03, 2014 5:29 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 325
Post Re: New Member
It's very hard to say. You'll see on the forum some people have suffered through this for years and others it takes a sudden turn for the worse within a year. Each of us has our own time, I think, so we just have to take it as it comes. Stay strong!

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


Thu Mar 06, 2014 12:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member
Welcome and I'm sorry for what you are going through. Some of the indications of a person being in final stages of life are: sleeping most of the day, barely or not at all eating or drinking. Have you had your LO evaluated by hospice? If hospice agrees that your LO should be receiving services, they only admit people when they feel there are 6 - 12 months left, if that helps. 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.


Thu Mar 20, 2014 4:19 pm
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
My father just got released after about 2 weeks in the hospital. The assisted living place asked to take him to Emergency because of severe constipation. He ended up aspiring and getting a lung infection. Now we are back to assisted living, but he is very weak and is having trouble walking and feeding himself. He also came out with a catheter. I convinced the doctor to give him some physical therapy so hopefully he will learn how to walk again after 2 weeks in bed. He tried to get up in the hospital, but they had him restrained. They are not allowed by licensing to restrain him at assisted living so chances are he will get out of bed a fall. It is not a good situation. I wanted him to go to rehab, but the doctor didn't think it was appropriate and thought he would do better in a familiar environment.

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Thu Mar 20, 2014 11:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member
It's really hard to know what is the most appropriate thing. I too would think that a rehab facility might be called for at this point but I can also understand the dr.'s thinking about a familiar environment. My dad went from the hospital to 2 or 3 wk. in rehab, where he learned to walk again. As soon as he moved to the ALF he decided he'd had enough walking and refused to walk. He wanted to be in a wheelchair and have someone push him most of the time, and that was that. He wouldn't cooperate with the PTs who came into the ALF and several of them quit. I don't think they had any understanding of the LBD issues so they got impatient with him. He wasn't doing what they wanted him to do anyway so the PT sessions were just a waste of money. I wish you a lot of luck and know what you are going through at this point. I remember feeling so helpless, wanting to do more to help my dad, but really, there was nothing I could do to make his situation any better. I just had to let him know I was there for him and try to lift his spirits. Good luck with it all. It is a very difficult road to travel. 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.


Fri Mar 21, 2014 8:42 am
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
I guess the biggest Blessing in my situation is my father tries very hard and is very sweet and compliant with all the caregivers. They all like him and don't mind working with him. However, his dementia is very aggressive. Less than 1 year ago he could charm and trick people that he was normal and even jog. Now he is super confused and has great difficulty going to the bathroom, speaking, eating and walking. His memory is good for some recent events and most events that are 60 years in the past.

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Fri Mar 21, 2014 9:17 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member
The long term memory is amazing, isn't it? My dad could also remember the most intricate of details from when he was a kid, in college, WW2, etc. but couldn't remember that he'd just come back from breakfast. :(

_________________
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.


Fri Mar 21, 2014 9:54 am
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
I think my father is finally near the end as he was pretty much asleep all day and didn't eat any food. He is now down to 130 pounds. His normal weight was always 175. The hospice nurse thinks he aspired and has a slight fever. They are dropping most of his medications and trying to prepare us for the inevitable. I keep telling myself that I will not be sad and looking forward to his suffering ending and life in heaven starting.

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Tue Dec 23, 2014 12:57 am
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 50
Location: Pennsylvania
Post Re: New Member
I am very glad to know your Dad is in hospice care. I am glad for you and your Mom also. Compassionate care and comfort to the end of this journey on earth is a wonderful gift for your father. It is a blessing when our loved one's suffering ends, but the sadness of the loss is still real and can take time to work through. Have patience. You father is a lucky man to have had you by his side. Blessings to you and your family.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Tue Dec 23, 2014 8:19 pm
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Joined: Thu May 15, 2014 10:41 pm
Posts: 137
Location: Phoenix, AZ
Post Re: New Member
Number1Son - Oh, so sorry to hear this. I went through this process in April, and it is still hard for me to look back on. There is no easy path through this. My heartfelt thoughts are with you.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Tue Dec 23, 2014 8:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member
Big hugs coming your way. It's a tough time. 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.


Wed Dec 24, 2014 5:32 pm
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
The hospice people have been angels from God. This hospice woman brought her guitar and sung to my father...

https://www.youtube.com/watch?v=LGH2kS3pUBo

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Wed Dec 24, 2014 8:26 pm
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Joined: Sun Mar 02, 2014 9:38 pm
Posts: 13
Post Re: New Member
I am no longer a "new member", but a veteran. My father passed away at 8pm on December 27, 2014. This was about 1 year in Memory Care. The hospice people gave him oxygen, but his last meal was 12/21 and the last few days he couldn't even swallow water. He was sleeping almost all the time. The last few days his breathing was very rapid and he was clearly in distress. His breathing stopped and he turned white. I could feel his "spirit" leave and I felt calm. He was about to turn 84. His PK symptoms started to be noticeable at 75. He was always in excellent health and weighed about 175 for almost all his life. In the end he was only 130 pounds. He never smoked or drank and exercised daily and had an excellent diet. It may not be medically significant, but he was also a great father:)

_________________
Son of father with Parkensons and LBD since he was 75 years old. 4 years in Assisted living with his wife with the last year in memory care. Moved on to heaven just before he would have turned 84 on this earth.


Tue Dec 30, 2014 12:56 am
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