I've never posted here before, but thought I'd share some of the questions I've been pondering about my DH's status. Because of myclonic jerks and general weakness, he has been falling alot...broke a rib about 8 weeks ago. Additional bruises, black eye from other falls. I have a caregiver all day with him while at work. But any of us can be standing right next to him, and he goes down. While he has some better days, the newest meds the Neurologist is trying, really aren't working--Gabapenrin. He's heavy, tough to move and generally I'm so afraid he'll hurt himself. My DH has early onset and is 57. In the past 6 months we moved through the agression, violence, hallucinations, full assistance in the bathroom, and now he needs to be fed. And also, he really lost his speech early, and can say very little. He's now pretty docile and probably moving toward immobility? But he has good days and bad. I always thought that I'd try to keep him home until the end (hard to say), but I'm really wondering if it will be possible. Maybe I'm just getting to the stage when I'm beginning to contemplate it. Thanks for listening.
adagio, welcome to the family! I am sorry for all you and your DH (dear husband) have had to endure. Heartbreaking.... I really have no great pearls of wisdom on the falling, it was very scary when my husband went through this. Nothing I did could prevent it. Even in the nursing home he still had several accidents. Only when he lost mobility did the falling stop. I HATED seeing him lose his ability to walk, but it was such a relief too knowing he was no longer in danger of hurting himself. Others who have more experience with early onset and falling will be along to share their experiences. Glad you posted and I look forward to getting to know you better ((welcome hugs))
adagio....Welcome....there is a gal on here named Coco...and she is everyone's sweetheart. Her husband has done a lot of falling. You might want to go to the top of the page and do a search for her name or just type in falling and I am sure several people have posted on this subject. We are all here for you and if there is a * star by our names it means we have already lost our spouses. Some of us have stayed on to help those that are new or anyone that needs help.
sometimes the falling can be medicine side effects, other times its a loss of balance and vertigo that could be the disease itself. most all voluntary/involuntary areas of the brain will be affected at some point with this disease if they live long enough. you may want to ask about the meds hes on and see if sudden drops in blood pressure like when standing or low blood sugars could be a cause. divvi
aww JudithKB* what an absolutely kind thing to say.
adagio, I think my husband falling is a different type, but falling all the same. He has arthritis in his knees, that combined with stage 6 Alzheimers and yes he is falling, at least once a day. Lots of stumbling and going forward. Of course he forgets he cannot walk well so cannot be told to JUST SIT DOWN!! How hard that is though. to just sit.
The visiting nurse has given me a belt to put on him that has handles so I can at least help him without killing myself. Often I have to just let him sit there until he can get himself up, and then he cries and sobs.
That, along with his crying and confusion, has led me to start the application process. But oh..how hard it is. Despite all the advice from friends and family that I need to do it, it is SO HARD. I know I am not qualified for all of this, I know it is likely time, but I think about the man that bought this home for us, landscaped it beautifully, helped everyone his whole life, and now, he has to leave home?
When my husband went into the nursing home, they asked if he had fallen in the past several weeks. He had. They put him in a wheelchair right away. He did have therapy for awhile and they had him walking but not for long. I'd rather have him in a wheelchair than falling and hurting himself. My husband had very thin skin and every fall caused a lot of bleeding.
My dh was falling for a couple of years. He would just drop - no warnings. I had a wheelchair on our walks just in case. The neurologists were baffled as dh was on so few meds. Finally he was given Dilantin (an anti seizure med). Later that was replaced with Keppra. After being on the medication for over a year with no falls, the neurologist took him off and wham! another episode so right back on the Keppra. I only give him 1/2 tsp am and pm. Hope this helps. It is very frightening that no matter how careful you are, they can just drop. Still no one knows what the cause is or why it happens. The doctors/nurses keep telling me that medicine is still very new and they don't have all of the answers. There is a great deal of trial and error.
Lloyd used to fall 1-6 times in the mornings...always in the morning. I figured out that in our case, it was the meds. Too much sedation before bedtime and he did not wake well. He would wake up jerking and hence, would fall and occasionally injure himself. I have played around with his meds and he has not fallen for months. He is on 3ml 2x day of Keppra, one 10mg Namenda per day, and 3-4ml Neurontin at bedtime. Depending on how alert he is a bedtime, I may give him no Trazadone, 25mg or 50mg. If he is exhausted, I see no reason to give him the Trazadone. He may twitch in his sleep. but no myoclonus for a long time. Less is better in our case. His doctors prescribed 1500mg/15ml of the Keppra and 2 Namendas, and 5ml Neurontin, but I don't give him that much. And his neurologist wanted him in a wheelchair almost 2 years ago. I have the transport chair, but we do not use it. Lloyd is what the neuro says is end stage...he does not like to put a number on it. A nursing home was suggested 2 years ago, but we are still home.
Thank you so much--everyone--for being so welcoming, and the info about some options (trial and error) that you've explored. On Saturday I spent several hours in the er with my DH. He had fallen again and gashed his chin just under his lip. Thank goodness it didn't turn out to be a significant cut and didn't harm his jaw! And he was so 'off' all weekend. It took 2 male nurses to get him into the car...he was just giving out at the knees throughout the day. Today was a good day. And that is how it is, and why I struggle to think that it's time for placement. We have a wheel chair, but have not used it yet. Will definitely need to the next time we go out anywhere. My neurologist doesn't think it's the meds, but the latest he's prescribed aren't working for the myoclonus. As you've shared here and on some other posts, tough to know. Thanks again...you are all so caring.
adagio, I think maybe if it took 2 male nurses to put him in your car, he got more sedation than he could handle. I avoid sedation any time possible. No more cat scans because he has to be knocked out. There is no point. The last time he injured himself falling, he cut his finger to the bone. They had to sedate him to do bloodwork. Still haven't figured why the bloodwork was necessary. Lesson learned. But that sedation was wearing off by the time they wanted to stitch. He had the novacaine at the point of injury so I said no. My DIL, SIL, daughter, and I were there so we all helped to hold him still. As it was, we still had to carry him home, but recovery was so much faster. They try to scare me into a cat scan every time I take him to the ER...must be the $650 they charge. They tell me that he could bleed to death internally and I just tell them his death should be so merciful - he has Alzheimer's. Sorry if my candor offends.