Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi My Mom is the one with LBD...she is 83 almost 84 and you described her to a T. They also said I need to put her in a nh. But I made a promise I wouldn't and I am trying to keep that promise. This group is helping me to keep it. She has bad delusions and hallucinations. She is lost most of the time and doesn't recognize her own home. She always wants to go home. I like everyone else here would like to have my old Mom back. She also has the closed eye problem. When I ask her to open her eyes she says they are open and she is looking at the floor. She is on resperdal and exelon. Resperdal is on the bad list and I plan on having that one changed as soon as I can make another appointment with her psychiatrist. We had to cancel the last appointment because of Frances. This group laughs, cries, screams, and vents together. We also pray together. If you need a shoulder to cry on just ask and you will have so many shoulders you won't know what to do. Take care of yourself because that is as important as taking care of your loved one. Hugs and prayers Jacqui Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi, first of all, you are doing all the right things for your dad. You need to remember that during the harder times. It is hard to know what the next moment, never mind the next day will bring. Somehow we manage and being here in this group has helped me a lot. There are wonderful people here with loved one's at different stages of LBD that will give you endless support and help. Your dad sounds very much like my mum, so I know how trying it can be when he is difficult or nasty with you, yet pleasant and normal when talking to your siblings. It helped me a great deal to learn that this is a common behaviour with LBD and not anything personal directed to me. In our family, my sister bares the brunt of mums nastiness as my sister lives close to her and is able to see her every day. It seems that the one doing the most of the caregiving tends to get the nasty behaviours for some reason. I can totally relate to your feelings of loss regarding who your dad was before LBD. I have said before that I feel like this disease stole my mum and replaced her with a stranger. I miss the times we used to sit and talk and laugh. Mum is so wrapped up in her own world now that conversation is non existant. Instead we concentrate on little parts of a day and small achievement. Sometimes she is like her old self, and I often find that worse because I know it wont last. You are not alone, and I hope you find friends and support here. Sincerely, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 " seanmairx2 " wrote: > My father was diagnosed with LBD about 2 months ago...until I am physically or emotionally unable to care for him, Our home is HIS home. Yesterday his primary care physician and his psyciatrist told me that Dad will probbly be in a Nursing home within 6 months. I dont want that to happen- selfish of me I am sure! Maybe that would be best for Dad but... Any help/suggestions most appreciated. : Stay with this group, all together we know, understand and share more than any of the medical personnel we deal with do. We help, support and save each others' sanity everyday, sometimes hourly. The doctors telling you that your father will probably be in a NH within 6 months are just guessing. Maybe they don't understand how badly you don't want that to happen. Maybe they think you can't handle it and in that respect they are right, at least not alone anyway. However, with the proper medical support, home aides, nurses, legal advice and this group you can do it, quite possibly right up to the end. And unfortunately, family members may not be your allies in this, hopefully at least some will be. I find my friends are more help than some know-it-all and well educated family members. Falls and infections seem to be our biggest worries at a certain stage. Sadly though, short of major physical complications, they all become bedridden and then falls are no longer a worry. Trying to keep somebody who can't remember safe from falls is a personal achievement for each of us. Go with your heart, sometimes we had to resort to tying my MIL in the chair (sadly in her best interest at that particular time). And never again feel that you are being selfish for wanting to keep your father out of a NH, those feelings are commendable, this group knows how much so, more than anyone who isn't living with LBD caregiving day in and day out. Someone here can help with advice and suggestions on pretty much everything. Read, post, ask questions, rant, rave, cry, rejoice, We are here. Kathy in OHIO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 mhair, I wish I could give you suggestions, but I don't have any. When my Dad is in one of his " Lewy " modes, he also tries to use his walker backward. There are times he mistakes it for his wheel chair and attempts to ride it. At this point, he has bad days and better days. I hope for more of the latter than the former. My two sisters live out of the country and one calls frequently and one ocassionally. He always rises to the phone calls and tries to sound chipper for them. Then he reverts to complaining about how he feels. when he hangs up. He's on Aricept, Celexa, Sinemet and Neurontin. You certainly seem to be on top of things and doing right by him. Hang in there. This is a very wobbly ride with LBD. Gitch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi, We kept my mom in the home until the very end. We hired caregivers to come in and help with her daily care. We went ever night to fix the meals and to bathe her. It is a very difficult decision as to keeping them home or a nursing home. I am a firm believer that no matter what direction you go as long as you do it out of love, it is the right thing. My mother had hallucinations, the mean looks, sometimes the mean talk. But I never regretted nor do I today regret the time I had with her. Mom passed 1/31/04 and Dad passed 9/1/04. So I can definitely relate to the roller coaster ride you are on. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Roller Coaster Ride >Date: Wed, 08 Sep 2004 12:27:01 -0000 >MIME-Version: 1.0 >X-Originating-IP: 198.81.26.106 >X-Sender: seanmhairx2@... >Received: from n7.grp.scd.yahoo.com ([66.218.66.91]) by mc6-f27.hotmail.com >with Microsoft SMTPSVC(5.0.2195.6713); Wed, 8 Sep 2004 05:33:11 -0700 >Received: from [66.218.66.31] by n7.grp.scd.yahoo.com with NNFMP; 08 Sep >2004 12:27:36 -0000 >Received: (qmail 53235 invoked from network); 8 Sep 2004 12:27:34 -0000 >Received: from unknown (66.218.66.216) by m25.grp.scd.yahoo.com with QMQP; >8 Sep 2004 12:27:34 -0000 >Received: from unknown (HELO n18.grp.scd.yahoo.com) (66.218.66.73) by >mta1.grp.scd.yahoo.com with SMTP; 8 Sep 2004 12:27:34 -0000 >Received: from [66.218.67.250] by n18.grp.scd.yahoo.com with NNFMP; 08 Sep >2004 12:27:04 -0000 >X-Message-Info: JGTYoYF78jEeXO3+mAl8jmMDQzbZeJS/ >X-Yahoo-Newman-Property: groups-email >X-Apparently-To: LBDcaregivers >Message-ID: <chmtql+4kfveGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.73 >X-Yahoo-Profile: seanmairx2 >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-34693-1094646455-cat86443=hotmail.com@... >X-OriginalArrivalTime: 08 Sep 2004 12:33:11.0757 (UTC) >FILETIME=[01041FD0:01C495A0] > >My father was diagnosed with LBD about 2 months ago...each day for >that matter, each moment can be oh so different. I am his primary >care giver and there are times when he gets oh so upset with me and >thinks we want to throw him out and place him in a Nursing home. We >keep reassuring him that until I am physically or emotionally unable >to care for him, Our home is HIS home. Dont know what i will do when >that time comes though! I have been keping my siblings in the loop >as >they are out of town...hours away. I know they care, calling alot to >talk to Dad etc. When Dad talks to them, which is usually after I >have updated on the goings on, Dad is perfect. Laughing and carrying >on a very coherent conversation. After he gets off the phone, he is >back in his own world saying little if anything to us here. He is on >aricept and wellbutrin. I think we are doing right by Dad. He sees >both a psychologist and a psyciatrist. The latter being extremely >well versed in LBD. There are times when he uses his walker >backwards and when I ask him to turn it around and not " pull " it >behind him, the nasties come out...not in words but Looks. He tells >me I dont love him and that he is doing everything right and I am >picking on him. Believe me, that is not the case- I love him dearly >and am concerned for his safety because if he were to fall, he would >not be able to live here with us. This LBD is really lousy! I want >the best for Dad. I just dont know what to do to take some of the >tarnish off his golden years- he is 90, but I dont know how. He is >my Dad but, so much of the time, it is another person in his body and >mind and it is oh so hard. There are times when he will say or do >something and ,not remember. Yesterday his primary care physician and >his psyciatrist told me that Dad will probbly be in a Nursing home >within 6 months. I dont want that to happen- selfish of me I am >sure! Maybe that would be best for Dad but... Any help/suggestions >most appreciated. > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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