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 Where to start! 
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Where to start!
My dad recently diagnosed, has his Phd, and is 85
He has Parkinson's,dementia and REM behavior disorder. He also has history of prostate cancer and has maintained a PSA of 0 on Lupron It has been suggested to stop the Lupron, has any one had experience with this? We are beginning to figure out future care, mom is legally blind with copd and severe arthritis limiting her mobility. Their wish is to remain together. I am thinking of moving in when they need 24 hour care. And hiring private duty while I am at work. It would break my heart to place them, as I know dad would be moved to a dementia unit at some point. I am a hospice nurse so I have an idea what I am in for. But before we remodel the bathroom I have to be sure I can do this. Is anyone else caring for their parents in home? Any suggestions?

Wed Sep 07, 2011 12:00 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Where to start!
While I haven't cared for a parent with Lewy, I have cared for my husband, whom I had to place in a skilled nursing facility in December. As an RN, I also believed I could take care of him, myself, but found that the physical and emotional strain became too much and sleep deprivation was a huge factor. The combination of his physical debility and his behavioral issues became too difficult for me and I sustained several back injuries. I wish you the best but believe that, over the years, it might become far more difficult than you imagine, especially caring for your mother, as well.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Sep 07, 2011 1:29 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Where to start!
Liberty, welcome!

Two impaired parents. Wow. It would be awesome if you can keep them together. It will not be a failure if you cannot. This is a huge challenge.

The best kind of placement situation might be a continuous care community. One of the members of my local caregivers' support group lived with her husband in an assisted living unit (or it may even have been an independent living unit -- I'm not sure) for a few years, and when she could no longer care for him, he was moved down the hall (well, actually into another building connected by skyway) into a memory care unit. She joined him for most meals. Sometimes she'd bring him back to their apartment, especially when their family visited. She visited him frequently throughout the week, and if something came up with him she could be there in the few moments it took to walk through the skyway. She was in good health but a frail little old lady who probably had trouble assisting him with ADLs. This seemed like a very good arrangement. He has since died, and she continues in the apartment they once shared.

Liberty, it is truly admirable the you are willing to move in with your parents, and that may be do-able, especially if you are willing to hire (and they can afford) additional help, and not just while you are working. But before you do any remodeling please look carefully into other ways you may be able to keep them together in a meaningful way, if not literally.

You do know better than most what you would be getting into. But if your main exposure is to hospice, that may not prepare you for time (and it could be a long time) leading up to the final stage. I suggest you browse around and read lots of posts of people caring for a parent, to get a broader idea of what it can be like.

Again, welcome, and I look forward to more of your posts.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Sep 07, 2011 4:28 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Where to start!
I'm glad you found this site, and welcome! Like others have said, do a lot of reading on this forum as many, many of us have been where you are right now and had the same questions. There are big issues that need to be solved, but I will give you a smaller example of some of the things you are dealing with right now.
Remodeling ex. - my dad had a powder room remodeled to have a shower put in. Because of his cognitive issues, he didn't think this through and didn't tell us that he'd had a dx of possible Parkinson's. He spent a LOT of money having this done, didn't make the door wheel chair accessible, couldn't figure out how to use the very simple one-handle shower control, and only used it a few times, then ended up having a huge "event" 2 mo. later, was hospitalized and never came home again (moved into ALF).
Once in the ALF he was a 1-person assist, needing 24/7 care, and a few months later became a 2 - 3 person assist. Things can degenerate very quickly, I think especially at an advanced age where there are already other health issues. Several people on this forum have lifetime injuries from lifting and transferring their LO when they needed transfer assistance all the time. You don't want to injure yourself nor drop your parents when trying to assist them.
I'd read as much as I could on this forum, get some books about LBD too, before you make any life- or house-altering decisions. Good luck to you and I hope we'll see you here more, 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 Sep 07, 2011 9:02 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Where to start!
liberty, I too cared for both my parents up until 3 weeks ago. Dad is 85, Mom is 82, both bed bound and completely dependent. I don't know if you have any family, but it is extremely hard work. Dad became seriously ill 2 months ago and spent 5 weeks in hospital, after which the doctor commended me on all my good care of Dad, but took the decision out of my hands and placed Dad in a nursing home. It was a decision I couldn't make, and he was kind enough to see that I could no longer cope. Dad, Mom and I were heartbroken, but relieved.Dad is a very old-fashioned Irishman, who only ever wanted to be in his own corner at home - never bothered going out - he was happiest working in the bog saving turf . He has been in hospital twice in his whole 85 years - once after a stroke 5 years ago, and again recently - he was a man contented with a very simple life. He did not want to go anywhere only his own house. He is now in an amazing home where he has the 24 hour care that he needs, and my mother is at home on her own. I begged her to move in with me, but she stubbornly refuses, so we are at a stalemate at the moment. The nursing home is literally on Mom's doorstep, but it is heartwrenching to think of them so close to each other, but knowing they may never see each other again, - as to move either of them would not be a good idea - Dad has COPD, among may other complaints (including Lewy), and my mother would also need an ambulance to move her anywhere. Dad cries every single day, begging me to take him home. I just physically and emotionally cannot do that. You have many, many difficult decisions ahead of you, but you will be fine - your love for your parents will get you through. There is no easy answer - everyone is different. My mantra is 'take it day by day'. That is how I coped, and how I am coping now. I never looked too far ahead. It is funny that you ask about remodelling the bathroom. I had just finished doing the bathroom for Dad when he got so ill, and he never got to use it.
This is a wonderfully supportive community - come here often - it will keep you going through the tough times. Best of luck,
Ger x

cared for Dad who passed away on January 28th 2013 R.I.P.

Wed Sep 07, 2011 12:24 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Where to start!
Welcome to the LBDA forums, the question you ask I believe you are the only one that can answer it, you don't mention a husband or children but I can tell you this is a very unpredicitable illness, it would mean between your job and parents a 24/7 caring for someone, I also suggest looking around the forums as I know others have cared for both parents but the question if it were me that I would be asking is can I give my mom and dad the care that they need and deserve, I like some of the others that have posted cared for my husband with LBD and it was hard, I did manage to keep him home but again it was hard !

Good Luck with making you decisions, you have a great deal to think about !

Irene Selak

Wed Sep 07, 2011 9:11 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Where to start!
Thank you everyone for taking tmebto respond to my post! I am so grateful! I will check around the forums, I ordered a couple of books, and am currently reading a caregivers guide for lbd. My dad is so heathly other then lbd so it could be a long haul. I think one day, one moment at a time is going to have to be how I proceed from here! I look forward to sharing this journey with you all and hope I can support each of you also! Thanks again!

Thu Sep 08, 2011 8:24 pm
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