Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Imelda, That's the most difficult aspect of this illness. One day things are going well and the next day something happens to make you realize you life will never be the same. My husband was in the same boat about 1 1/2 years ago. He was still trying to work and I too noticed the same behaviors. I would make lunch for him and he wouldn't bother to eat it. He began loving sweets to the point that he'll take candy from our boys! You may think he is coping okay at work but be careful. I was under the illusion that all was well when Mark worked. I realize now I was in deniel. Fortunately, I worked with him so I was able to pick up the pieces he dropped. Today he is content, except for the incontinence. You wanted to know the next stage - well here's where I'm at. I get him up in the mornings, clean and shower him, make his breakfast, get him dressed, take him to all appointments, go for walks when possible. He simply sits there and does nothing except some of the newspapers on good days and watch TV, although he mostly stares at the TV. He takes no initiative for himself. Most mornings he wakes up complaining about some new or old ailment. I can leave him alone for a couple of hours at a time but I carry a cell phone and check on him. Somedays he may remember to take his meds on his own but I always check. One the good side, he can still eat on his own, is relatively happy, he's a wonderful man and tries his best to do what he can. My fear is surviving this summer with our boys. He doesn't deal with children well because it's too much confusion for him. Our boys are 7 & 9 and and are going through their own issues dealing with a father who stares into space all day and handling the looks and comments from school mates and other people when they see their dad. But that's a whole other story that doesn't apply to most people on this web site. Regards, Kathy A bad day > My husband as I've said before is in the early stages of LBD. That > is: he can go shopping, take the train, gererally get to appointments (with > reminders) and most mind-boggling, still work 3 hours a week as a > psychotherapist. Somehow I was magically believing that perhaps, thanks to > those suppliments and regular doses of medication I give him, we could be > the ones to slip under the wire and not get caught up in the disease. I > guess yesterday set me straight. > His daughter came to visit and at first I thought he was acting > sicker for her sake, atlthough that didn't make sense since he would be > more likely to hide his illness from her. He was very unsure on his feet, > shuffling. Couldn't find words and then just used any word that was vaguely > close. He was very mixed up about procedures: how things were being done > and why. He was very slowed down and then would kind of talk in a rambling > way. He didn't make eye contact with her. And when we went out to dinner, > he ate a buttery desert! He probably hasn't eaten butter in 30 years; he > was always so disciplined about his diet. Now, even if I leave good food > for him, I'll come home from work to find he only ate bread. > I know so many of you have so much worse problems. There are so > many days when he isn't SO bad (although nothing like his old self) that I > try to believe the illness will stop at this stage. Someone once asked what > were the stages of LBD and I noticed no one could give a definate answer. I > think that's the scary part and I guess I'm just writing cause I'm scared. > Imelda > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Kathy: Your discription of life with your husband sounds very much like the dirrection I am going in. If you felt up to it, I'd like to hear about your boys. They are very young. Where are they in the winter? Or do you mean they will be home most of the day during the summer as opposed to being in school. How old is your husband.What kind of community do you live in? And do you have any other family to back you up? Before I wrote about our " bad day " I hesitated. There really wasn't any point to it except this: You are all the only people who understand. Imelda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Imelda, I'm glad you wrote about " bad day " because I think all too often we try to go about our days without thinking about the impact this sickness has made on our lives. I went through all the stages, denial, anger and now I'm going through deep sadness. I hoping that I'll soon get to acceptance and get on with my life. I, like Eve and enjoying the sweets and it's really starting to show. My boys are in school during the week days and although I have wonderful friends, they too have their children and lives. I live on Vancouver Island and my family lives on the mainland. I considered moving there but the house prices are really expensive and I'm concerned about uprooting the boys from their home, school, community, etc.. On the other hand, as I write this maybe I need to reconsider. My husband has two older children from his first marriage so it would be more convenient. My husband goes with a respite care group for five hours every Monday and I now have help on Fridays for six hours with Long Term Care. Anyhow, it's Monday and Mark is just arriving home. Welcome to and hang in there Ann. Regards, Kathy Re: A bad day > > Kathy: Your discription of life with your husband sounds very much like the > dirrection I am going in. If you felt up to it, I'd like to hear about your > boys. They are very young. Where are they in the winter? Or do you mean > they will be home most of the day during the summer as opposed to being in > school. How old is your husband.What kind of community do you live in? And > do you have any other family to back you up? Before I wrote about our " bad > day " I hesitated. There really wasn't any point to it except this: You are > all the only people who understand. Imelda > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 > My husband as I've said before is in the early stages of LBD. That > is: he can go shopping, take the train, gererally get to appointments (with > reminders) and most mind-boggling, still work 3 hours a week as a > psychotherapist. Somehow I was magically believing that perhaps, thanks to > those suppliments and regular doses of medication I give him, we could be > the ones to slip under the wire and not get caught up in the disease. I > guess yesterday set me straight. > His daughter came to visit and at first I thought he was acting > sicker for her sake, atlthough that didn't make sense since he would be > more likely to hide his illness from her. He was very unsure on his feet, > shuffling. Couldn't find words and then just used any word that was vaguely > close. He was very mixed up about procedures: how things were being done > and why. He was very slowed down and then would kind of talk in a rambling > way. He didn't make eye contact with her. And when we went out to dinner, > he ate a buttery desert! He probably hasn't eaten butter in 30 years; he > was always so disciplined about his diet. Now, even if I leave good food > for him, I'll come home from work to find he only ate bread. > I know so many of you have so much worse problems. There are so > many days when he isn't SO bad (although nothing like his old self) that I > try to believe the illness will stop at this stage. Someone once asked what > were the stages of LBD and I noticed no one could give a definate answer. I > think that's the scary part and I guess I'm just writing cause I'm scared. > Imelda Imelda, Of all the things we've read about this disease, I think they got the 'fluctuations' part real right. Our neurologist thinks my husband's LBD started about 5 years ago. Up until last year our lives were fairly normal, we were working together at our restaurant about 5 hrs a day, he was coaching youth league sports. The only things that really changed over that time was that my husband turned driving over to me and wanted me with him all the time. The hallucinations started a year ago and then we had to close our business about 3 months later because he couldn't cope with the activity around him. He gave up his baseball team and we were in the ER or traveling all over to find help. By the time we finally found help, the hallucinations were a real disaster - my husband would be up all night checking for fires and looking for phone numbers to call for help. After starting meds, we have a good sleep/wake cycle now. We get up and dressed in the morning, my husband watches news and sleeps off and on during the morning. About noon he'll be ready to go somewhere. He still walks on his treader and plays his piano. He never wants to stay away from home very long but he will take all his meds, go everywhere with me, and plays his piano everyday. This disease scares me too because it can change so quickly. -lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Kathy, my mind boggles every time I think of anyone raising children while caring for someone with this disease. They and the patient are going in opposite directions. The children will never know that parent as they might have, and will probably some day develop a fear of getting this illness themselves. Let's hope the trials under way will provide answers for better intervention/prevention soon! Imelda, thank you for writing about your bad day. I think we are all such troopers that we go from day to day not realizing what a toll this illness takes, just as Kathy said, and it helps to " let it out " and to know that others are hurting, too. I know there have been times when I wanted to scream or cry but couldn't get to the computer at the time. Besides, most of the world has no idea what it is like and wouldn't know how to respond. Imelda, please excuse me if I sound ugly here; I surely don't mean to be. But I hope your husband will discontinue practicing psychotherapy. The poor judgement that comes with this disease could have devastating consequences for his patients. Procrastination and poor judgement were some of the earliest signs that something was wrong with my husband, although I wasn't taking much notice way back then. I wish I had - it would have saved us a very, very expensive experience. In fact, it wasn't until I was cleaning up that mess that I could see in his own handwriting just how bad he was before it really " showed " on the person. Also, he has said that he noticed some problems shortly before he retired. I think the disease explains a very unexpected poor performance review a year or so prior for this man who was always considered the fountain of wisdom, common sense, and efficient smooth performance. Your poor step-daughter to see her dad like that. It must have been a shock. I recall that when I first realized Bob had problems that most of the rest of the world thought it was ME that was having the troubles, as he could still carry on good conversations and be " normal " for those on the outside. As he worsened I often found myself telling people I wished they could have known him before. Some shipmates from his submarine days could see monumental change, although they also commented that " the old Bob is still in there. " I shouldn't be writing like this. I'm starting to cry . . . Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Christie, thank you so much for your kind reply. I really appreciate that. I totally agree that " me " time can become a bummer because it is so much more alone than before. Differently alone. It was a good day until I wrote that piece. AND until my husband reminded me a few minutes ago that it's time to go see his mother in the hospital and I haven't been in the shower yet. He's cruising like a shark, ready to go FOR A CHANGE!!! Aaaaarghhhhhh. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Cheryl > I shouldn't be writing like this. I'm starting to cry . . . > > <<<< It sounds like YOU are having a rough day, too...sometimes taking a little time "for me" can make us feel even lonelier. Maybe it's because there used to be someone to share "me" time with in a way that doesn't happen anymore, I guess. I am really glad for your postings to the group and look forward to them, we will try to be "with" you during your down time. Give yourself a hug for me! Take care, Christie >>>> ********************************************************************************** L. Brown Asst. Prof. of Marketing University of Michigan Business School 701 Tappan Street Ann Arbor, MI 48109-1234 Phone: Fax: E-mail: clbrownumich (DOT) edu ********************************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Cheryl, Thanks for your support. It's difficult knowing how your husband used to be and also knowing that his soul and all the things you love about him are still in tact. One thing I know for sure, my husband has never loved or accepted me more than he does today. I'm sure Bob feels the same about you. The one common thread I've noticed since joining this group is that everyone, both the patient and the caregiver are loving and kind people. Sometimes I think this brings out the best in us. I spent some time yesterday while Mark was at respite care listening to music. One of the lyrics is " it seems a time of sadness is a time to understand. " Through all of you I am learning to live. Regards, Kathy Re: A bad day > Kathy, my mind boggles every time I think of anyone raising children while > caring for someone with this disease. They and the patient are going in > opposite directions. The children will never know that parent as they might > have, and will probably some day develop a fear of getting this illness > themselves. Let's hope the trials under way will provide answers for better > intervention/prevention soon! > > Imelda, thank you for writing about your bad day. I think we are all such > troopers that we go from day to day not realizing what a toll this illness > takes, just as Kathy said, and it helps to " let it out " and to know that > others are hurting, too. I know there have been times when I wanted to > scream or cry but couldn't get to the computer at the time. Besides, most of > the world has no idea what it is like and wouldn't know how to respond. > > Imelda, please excuse me if I sound ugly here; I surely don't mean to be. > But I hope your husband will discontinue practicing psychotherapy. The poor > judgement that comes with this disease could have devastating consequences > for his patients. Procrastination and poor judgement were some of the > earliest signs that something was wrong with my husband, although I wasn't > taking much notice way back then. I wish I had - it would have saved us a > very, very expensive experience. In fact, it wasn't until I was cleaning up > that mess that I could see in his own handwriting just how bad he was before > it really " showed " on the person. Also, he has said that he noticed some > problems shortly before he retired. I think the disease explains a very > unexpected poor performance review a year or so prior for this man who was > always considered the fountain of wisdom, common sense, and efficient smooth > performance. > > Your poor step-daughter to see her dad like that. It must have been a shock. > I recall that when I first realized Bob had problems that most of the rest > of the world thought it was ME that was having the troubles, as he could > still carry on good conversations and be " normal " for those on the outside. > As he worsened I often found myself telling people I wished they could have > known him before. Some shipmates from his submarine days could see > monumental change, although they also commented that " the old Bob is still in > there. " > > I shouldn't be writing like this. I'm starting to cry . . . > > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
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