Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Hi Shomy again... You can find the LBD Phases from the links below. Please keep in mind that these phases were put together by caregiver observations - not by doctors, not by LBDA. The document is highly useful nonetheless. Go to the Files section: http://health.groups.yahoo.com/group/LBDcaregivers/files/ And go into the folder marked: LBD Phases List of Phases put together by the LBD Caring Spouses Group > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is > living in a retirement home, in the locked dementia ward even though > his specialist does not want him to be in a locked facility as he is > still cognitively capable. He has lost all concept of time, but with > Exelon, his cognition has greatly improved. > I have a question: I was told that there are stages to this disease > with specific symptoms to each stage. If anybody knows anything about > these stages, I would really appreicate knowing about it, because it > would really help put a time frame around this awful disease and > prepare us for Dad's future care. > Thank you and God bless. > SS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 It's me again Shomy LOL But keep in mind that everybody's different - that 2 years for one is 2 months for another - there's no telling what can happen. It's better then to prepare now for all things. Are all the plans set? Visit this document: http://health.groups.yahoo.com/group/LBDcaregivers/files/ Read this document: The Business of Dementia.doc The 'legal' things you need to know about Is everything planned? Go to the Links section: http://health.groups.yahoo.com/group/LBDcaregivers/links And go into the folder marked: Planning (Legal, Law, Medicaid) The earlier you plan, the better. It's best to try and be 2 steps ahead of what the disease will do. Visit Nursing Homes now vs. later - so when you're hit w/ the question 'where do you want to send your father?' you'll know what to say. That's one thing I learned the hard way - we were never ahead of the game... we were constantly playing 'catch up' and putting out fires... had we thought ahead... we could have saved so much aggravation. > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is > living in a retirement home, in the locked dementia ward even though > his specialist does not want him to be in a locked facility as he is > still cognitively capable. He has lost all concept of time, but with > Exelon, his cognition has greatly improved. > I have a question: I was told that there are stages to this disease > with specific symptoms to each stage. If anybody knows anything about > these stages, I would really appreicate knowing about it, because it > would really help put a time frame around this awful disease and > prepare us for Dad's future care. > Thank you and God bless. > SS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Hi I'm new here too. My dad was just diagnosed with LBD and has been in the hospital for a week. I'm trying to research and find out as much info. as I can to better meet his needs. I would like to bring my Dad to the nursing home where I work, but the Dr. is recommending a dementia locked unit. My brother would like to take him home and have someone stay with him while we all work and do what we need to. I personally don't think that can work, because the Dr. says he needs 24 hour care and supervision. If you have any advice send it my way....sounds like your new at all this too but have been in it for a year with your loved one. Good luck and God bless, Subject: Stages of LBD? To: LBDcaregivers Date: Sunday, July 20, 2008, 7:34 AM Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is living in a retirement home, in the locked dementia ward even though his specialist does not want him to be in a locked facility as he is still cognitively capable. He has lost all concept of time, but with Exelon, his cognition has greatly improved. I have a question: I was told that there are stages to this disease with specific symptoms to each stage. If anybody knows anything about these stages, I would really appreicate knowing about it, because it would really help put a time frame around this awful disease and prepare us for Dad's future care. Thank you and God bless. SS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 , When the MD said my Mom needed 24 hour care, that is what she needed. I couldn't leave her alone at all. When my Mom left something turned on, it wasn't the water but the gas stove. When they found her, the house was full of gas! After that she came to MI to live with me instead of WI where she was living alone. I did have help coming in, but not 24/7. It is such a hard decision. If you can afford to pay help when you all can't be there, you can bring her home. It is more full time work than caring for a baby. They don't get more able to take care of themselves, it only got worse for me. And SS, there is no time frame! Even knowing the stages with this disease, it goes back and forth a lot. When I went and got Mom, I thought maybe a year, she looked so bad. She lasted 4 more years! It is lots of work and everyone needs to be ready for it. And we had to adjust to Mom's world, she couldn't do ours. (My daughter helped me besides daycare.) Hope you all have lots of help with each other and the Medical world get up to speed. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Stages of LBD? To: LBDcaregivers Date: Sunday, July 20, 2008, 7:34 AM Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is living in a retirement home, in the locked dementia ward even though his specialist does not want him to be in a locked facility as he is still cognitively capable. He has lost all concept of time, but with Exelon, his cognition has greatly improved. I have a question: I was told that there are stages to this disease with specific symptoms to each stage. If anybody knows anything about these stages, I would really appreicate knowing about it, because it would really help put a time frame around this awful disease and prepare us for Dad's future care. Thank you and God bless. SS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Dear , Thank you for your replies and wonderful insight. The links were very helpufl. My Dad is actually in Toronto, Canada and our legal and health care system is a little different from the States. However, so far my sister and I have taken all the necessary steps to have control. My Dad himself suggested last year that we should arrange for power of attorney for financial care and personal and medical care. All that has been taken care of. Our only dilemma is how best to care for Dad: AL retirement home, or dementia floor of the retirement home, or nursing home.... We end up questioning our decisions everyday, due to the fluctuating nature of this disease. We have put Dad on the waiting list for the best 3 nursing homes we could find, but when his name comes up, we either accept the placement or lose our chances and have to start the whole process all over again and wait years before another placement comes up. Problem is: his name might come up within the next 6 months, and what if his symptoms are not advanced enough. It wouldn't be fair to put him in a nursing home when he is still high-functioning. But, how long will the high functioning last? These are really tough situations: at least with Alzheimer's, it's a steady decline. But with this disease, nothing is ever for sure. Thank you for listening, and responding. All the best, Shomy. > > > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD and > is > > living in a retirement home, in the locked dementia ward even > though > > his specialist does not want him to be in a locked facility as he > is > > still cognitively capable. He has lost all concept of time, but > with > > Exelon, his cognition has greatly improved. > > I have a question: I was told that there are stages to this disease > > with specific symptoms to each stage. If anybody knows anything > about > > these stages, I would really appreicate knowing about it, because > it > > would really help put a time frame around this awful disease and > > prepare us for Dad's future care. > > Thank you and God bless. > > SS > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Dear , I'm sorry about your Dad, but hopefully through these forums and groups we can all support and help each other with shared experiences. You mentioned the Dr. recommended a locked dementia unit.. In our experience, my Dad's behaviour and level of functioning actually improved when he was given the right medication which in his case was Exelon (a cholineseterase inhibitor). In the beginning of his diagnosis his condition was worse than now. Having said that, my Dad still needs 24 hour supervision, but an assisted living facility is able to provide that and is not as confining and depressing as a locked dementia unit. You have to keep in mind that in a locked dementia unit, the other residents are usually cognitively severely impaired and that might not be the case with your Dad. Unfortunately the directors of my Dad's retirement home arbitrarily decided to move him to the dementia floor (we suspect because it is much more expensive) and there is not much we can do about it, except move him to yet another facility. Regarding your brother's suggesstion to care for your dad at home, while it is a very laudable and admirable undertaking, you should both consider the long-term aspects. 24 hour care means day and night. Even if he gets a person to take care of him during the days, what happens if your brother wants to go out for an evening, or needs to go on a trip? It may seem easy now, but over the long run it can be extremely demanding and nerve-wrecking to be tied down 100% of your time. Care-giver burnout is something that takes its toll on a lot of care givers. In my personal opinion, if a good local retirement home with assisted living and possibly dementia care can be found which can provide quality care, compassion and are not just out there to make a quick buck (like my Dad's retirement home), then that would be the best choice. Especially if you and your brother are able to visit frequently and the time you spent with your Dad will then be quality time spent in enjoyable activites, rather than being engaged constantly in the cleaning, feeding and all the other chores that are involved. Two other words of advice: 1)pay special attention to medication and make sure your Dad's specialist is well-aware of the appropriate meds specifically for Lewy Body patients. 2)enjoy the time you have with your Dad. Don't let the practical and care issues take away from the exquisite experience of genuine love and affection that only a relationship with a parent can provide. All the best, Shomy. > > > Subject: Stages of LBD? > To: LBDcaregivers > Date: Sunday, July 20, 2008, 7:34 AM > > > > > > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is > living in a retirement home, in the locked dementia ward even though > his specialist does not want him to be in a locked facility as he is > still cognitively capable. He has lost all concept of time, but with > Exelon, his cognition has greatly improved. > I have a question: I was told that there are stages to this disease > with specific symptoms to each stage. If anybody knows anything about > these stages, I would really appreicate knowing about it, because it > would really help put a time frame around this awful disease and > prepare us for Dad's future care. > Thank you and God bless. > SS > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi , Just wanted to say welcome to the group. I'm rather new, too, and have found this group to be so informative and supportive. I've just moved from Australia with my husband to help my mom take care of my dad who has been diagnosed with LBD. My Dad is in the beginning stages but already I knew mom was having a rough time with the caregiving. So, we moved home and my sister has just flown out for the summer to help as well. We're caring for Dad at home and so far it's fairly manageable. There are definitely a lot of rough days and it emotionally takes a toll but we know Dad wants to be at home as long as he can. Right now we can provide good care for him and we're working on finding the right doctors and getting him on the right meds. It's a tough road but you take one day at a time. Thinking of you and your family. -Holly > > > Subject: Stages of LBD? > To: LBDcaregivers > Date: Sunday, July 20, 2008, 7:34 AM > > > > > > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD and is > living in a retirement home, in the locked dementia ward even though > his specialist does not want him to be in a locked facility as he is > still cognitively capable. He has lost all concept of time, but with > Exelon, his cognition has greatly improved. > I have a question: I was told that there are stages to this disease > with specific symptoms to each stage. If anybody knows anything about > these stages, I would really appreicate knowing about it, because it > would really help put a time frame around this awful disease and > prepare us for Dad's future care. > Thank you and God bless. > SS > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi Shomy, I saw responded to your question so I just wanted to say welcome but sorry for the reason why you're here. This is great group of people- a wealth of information and support. Thinking of you and your family. -Holly > > > > > > > > > > Hello, I'm new here. Dad has been diagnosed a year ago with LBD > and > > is > > > living in a retirement home, in the locked dementia ward even > > though > > > his specialist does not want him to be in a locked facility as he > > is > > > still cognitively capable. He has lost all concept of time, but > > with > > > Exelon, his cognition has greatly improved. > > > I have a question: I was told that there are stages to this > disease > > > with specific symptoms to each stage. If anybody knows anything > > about > > > these stages, I would really appreicate knowing about it, because > > it > > > would really help put a time frame around this awful disease and > > > prepare us for Dad's future care. > > > Thank you and God bless. > > > SS > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Dear Lin, Actually I'm still in Italy, but will be leaving for Toronto tomorrow and will be in Toronto by Friday evening. My sister tells me that Dad has been asking constantly for me, asking when I will get there. I can't wait to see him. I have my work cut out for me, that's for sure. But I know that everything seems much better and easier to handle when I'm actually there. Somehow problems seem a lot bigger when you're far away. I will write again from Toronto with my findings and progress. I'm also hoping to attend the LBD support group meeting. Thank you for your thoughts and for your support. Great to know I have you dear friends rooting for me. Shomy. > > > > > > > > From: shomy95 <shomy95@> > > > > Subject: Stages of LBD? > > > > To: LBDcaregivers > > > > Date: Sunday, July 20, 2008, 7:34 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello, I'm new here. Dad has been diagnosed a year ago with > LBD > > and > > > is > > > > living in a retirement home, in the locked dementia ward even > > > though > > > > his specialist does not want him to be in a locked facility as > he > > > is > > > > still cognitively capable. He has lost all concept of time, but > > > with > > > > Exelon, his cognition has greatly improved. > > > > I have a question: I was told that there are stages to this > > disease > > > > with specific symptoms to each stage. If anybody knows anything > > > about > > > > these stages, I would really appreicate knowing about it, > because > > > it > > > > would really help put a time frame around this awful disease > and > > > > prepare us for Dad's future care. > > > > Thank you and God bless. > > > > SS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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