Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Your daughter sounds like a wonderful person, Imogene. Iward27663@... m Sent by: To LBDcaregivers@yah LBDcaregivers oogroups.com cc Subject 03/14/2008 04:09 Recyled mail PM Please respond to LBDcaregivers@yah oogroups.com Hi everyone, I'm going to send you the latest letters I have been sharing with my oldest daughter and a could of other kids. Her letter is first; Dear Mom, I'm sorry it's taken me so long to get back to you. I did read your letter and the other lady's letter in full, and I wanted to think through my reply. You know that Don will have to go to some kind of assisted care at some time. You have the burden of caring for him now, but also the burden of deciding when you need to give over responsibility for his care. The woman who wrote the letter said, " You have some major decisions to make, and in my experience, those have to do with how you will live your life in faithfulness to yourself and with the most love for your mom. Love does not require self-destruction:it does require self-honesty " and she is right. You do not need to convince any of us of the cruel extent of his illness -- you are the one that must accept it. Intellectually, you probably know as much or more about LBD than most doctors; but the emotional impact cannot be learned. You are living it now. I'm sad that this can't be a sweet pep-talk, but I believe you are beyond that. You have my love and support. Melitta Darling, You are so right. I sent that fellow caregiver's letter to let you all know what I was facing. I read things similar all the time on the LBD List. But, I can't make a decision. It is up to when Don gets sick enough to go to the hospital. The only way Don can go to a nursing home, is for him to land in the hospital, and the Doctor deems him too ill to go home, but first he has to be in therapy for three months, and if the doctor still says he can't go home, then he can go in the NH on Medicaid, ( we don't have any money otherwise.) I don't know if they will take what pay Don makes or not. No one has given me an answer on that. If they do, I will have little to live on, unless SS says I can have a portion of his too. Like they do when the mate dies. We saw the Medicare's RN that has been assessing me, and overseeing my exercise and occupational therapy. I asked her what can Medicare do for us? She said only therapy, and to watch over us medically such as taking blood pressure, and fill our weekly pill dispenser. (big deal, I do that regularly, but I knew that's what they did, yet had to question anyway) She asked if we had considered Assisted living. I told her we had, and we had visited many places to get the lay of it, and they are Way out of our price range. She told me not to hesitate to call on our children, and to call her if one of us falls again. We saw Don's psychiatrist this week too, and he has to leave Don on the medicines he has. He said they only treat emotional problems like agitation, and depression, but Don is doing fairly well in that area. He has little spells, but nothing bad. He also told me there was nothing that can be done Cognitively. He will continue to deteriorate in that area. And, he is. The doctor started to test Don, and Don didn't know the date, (he said 23, when it was 11th) the month,( he said May) the year, (2006) nor the season, (He said fall). And he didn't know the building we were in. They didn't even bother with a full test after that. Don continues to loose weight even though he eats well. Many on the LBD List say the same things about their Loved ones too. Don is pretty hunched over, and has a hard time getting out of his chair most of the time. He has chest pain and when he is confused or hallucinating he doesn't ring the portable doorbell that has served so well the past few years. He comes to me. At least he knows to lean on me. (for now) Below is a letter I wrote to Jeff and Nessy's families. Hi children, Once again I need to call on you as a group to help clean up the remains of the tile laying, and cleaning a spot in the store room to stack the left over tile. I hope also that someone can take this extra stick-um stuff back to the tile store and see if they will give us anything back on it. We also have a place that was hidden behind the bathroom cabinet that has mold in it. we appreciate your fine meals more than you can know. I did cook some last week. I know you said you would be tied up for a month Jeff, and I know Don B., that you are too, but if you can, next month, will all of you please get together and help finish cleaning up this tile? (it's stacked in the front of the g arage, along with three big black bags, and a bunch of boards with nails. The back patio is a mess from the tile laying, and none of the piled up leaves have been raked since last fall.) (hey! all we need is a car on concrete blocks with no tires, to be real Rednecks. I didn't say this to the other kids they have been too busy to finish the clean up job right now, and they had said this month would be out) Don went out in the back yard this morning trying to see if the cat out by the fence line was all right (a hallucination), and for some reason walked the whole area of the back yard, (looking for the cat?) and when he got up near the house (what he was doing there is beyond me) he stepped on a loose brick (the men that fixed our drain left bricks piled everywhere) and Don fell. He came in needing the punctures in his hand cleaned up and bandaged. I thought that was all, but he took his padded coat off and his arm was a mess. The coat is a bloody mess inside. So I bandaged that up. I would hate to think what would have happened without that heavy coat. In the living room he asked if his thigh was alright and I couldn't see a thing. Later in the kitchen he asked again if his thigh was alright and pulled his pants higher. Oh brother! Get more big patches to put there. " Take your pants off dear so I can clean them. " An hour later, " Darling will you change your pants so I can wash them? " Another hour, Darling you still have your pants on, will you please change them? " he said, " You never told me too " He is becoming very, very confused. He can't do anything around here to help me. I asked him to lock the inside door when the nurse was here. He worried with the burglar door. I said, " No darling, lock the inside door, " He messed with the other door some more. I told him " Honey lock the door in your other hand. " He didn't know what I was talking about. Finally after several tries when I was just about to get up, his mind cleared enough to lock the door. He doesn't know in and out, up and down, to the left or right, or " the other hand. " If he has an object in both hands he has no idea what to do with them, and invariably he'll select the wrong one to do whatever he wanted, If he remembers what he wanted to do. This is just a small, very small, example of how our days are. The nurse told me to call her anytime. For what? I will get him to the hospital, pronto! Oh I had to do several loads of wash today, and didn't get around to bathing Don. It won't be long and someone else will come in and do the bathing. (That's when I'll call the RN.) He looks terrible. Tomorrow for sure. I hope he doesn't go to the hospital tonight. He leaves messes in his underwear, and he had a couple days beard on his face. Once he went to the hospital with mess in his shorts. It really embarrassed me. I didn't check them before we left the house. I had bathed him early, and forgot to check them the last minute. He won't wear protective underwear. (YET but he will soon.) Let us know if you can do clean up for us next month, please. One afternoon like you did last fall will be most helpful, and very much appreciated. We sincerely thank you with all our hearts, Smile it makes your face look so much nicer, and makes your innards feel good too. Love a lot, it's healing, Mama & Gra'ma Ward Litty, I have already received two letters. said it would be her pleasure to help, and Jeff said he will come by soon. Rose's brother had brain surgery today, and it is very hard on the family. He has tumors. Yep, more than one as I understand. So Jeff was with them. I don't know if I told you, Jeff and Rose live in a duplex in an upscale area, We haven't see it. It has two bedrooms upstairs. (one for office) I am sure there was more I wanted to talk about. Oh yes, the tile is helping my allergies a lot, and we have noticed that the dust in the living room is down by over 90%. It has been great for me to have the floor. We are concerned about falling though. Yet, nearly every time I fell I was either in the kitchen or bathroom where the floors were hard. I know it is going to tear me up for Don and I to have to part when the time comes, but by the same token I already mourn for him. I don't have someone to talk to. To express my thinking to, almost none. I am loosing him right in front of my eyes. My dear friend and close companion is fading more all the time. And yet, he could get to a plateau and be like this for several years yet. I hope I live a few more good years. With exercise, and a clean house I should be fine. Love so very much dear, Mama So fellow caregivers we are working through " all the problems what be. Or " all the problems we got " I am too swamped to get on the List just yet. But, thought I'd touch base. Love a lot with a smile and keep 'em guessing, Imogene Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. My precious husband, Don, is taking Zoloft and Razadyne. A happy personality is contagious. Infect someone today. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Norma, thank you, and yes they are all great. Four girls and two boys. Too bad they don't all life here. Love a lot, Imogene > > > Your daughter sounds like a wonderful person, Imogene. > > > > > Iward27663@... > m > Sent by: To > LBDcaregivers@yah LBDcaregivers > oogroups.com cc > > Subject > 03/14/2008 04:09 Recyled mail > PM > > > Please respond to > LBDcaregivers@yah > oogroups.com > > > > > > > > > > Hi everyone, > > > I'm going to send you the latest letters I have been sharing with my > oldest > daughter and a could of other kids. Her letter is first; > > > Dear Mom, > > I'm sorry it's taken me so long to get back to you. I did read your letter > and the other lady's letter in full, and I wanted to think through my > reply. > You know that Don will have to go to some kind of assisted care at some > time. > You have the burden of caring for him now, but also the burden of deciding > when you need to give over responsibility for his care. The woman who > wrote the > letter said, " You have some major decisions to make, and in my > experience, > those have to do with how you will live your life in faithfulness to > yourself > and with the most love for your mom. Love does not require > self-destruction:it does require self-honesty " and she is right. You do > not need to convince > any of us of the cruel extent of his illness -- you are the one that must > accept it. Intellectually, you probably know as much or more about LBD > than most > doctors; but the emotional impact cannot be learned. You are living it > now. > > I'm sad that this can't be a sweet pep-talk, but I believe you are beyond > that. You have my love and support. Melitta > > Darling, You are so right. I sent that fellow caregiver's letter to let > you > all know what I was facing. I read things similar all the time on the LBD > List. But, I can't make a decision. It is up to when Don gets sick enough > to go > to the hospital. > > The only way Don can go to a nursing home, is for him to land in the > hospital, and the Doctor deems him too ill to go home, but first he has to > be in > therapy for three months, and if the doctor still says he can't go home, > then he > can go in the NH on Medicaid, ( we don't have any money otherwise.) I > don't > know if they will take what pay Don makes or not. No one has given me an > answer on that. If they do, I will have little to live on, unless SS says > I can > have a portion of his too. Like they do when the mate dies. > > We saw the Medicare's RN that has been assessing me, and overseeing my > exercise and occupational therapy. I asked her what can Medicare do for > us? She > said only therapy, and to watch over us medically such as taking blood > pressure, and fill our weekly pill dispenser. (big deal, I do that > regularly, but I > knew that's what they did, yet had to question anyway) > > She asked if we had considered Assisted living. I told her we had, and we > had visited many places to get the lay of it, and they are Way out of our > price > range. She told me not to hesitate to call on our children, and to call > her > if one of us falls again. > > We saw Don's psychiatrist this week too, and he has to leave Don on the > medicines he has. He said they only treat emotional problems like > agitation, and > depression, but Don is doing fairly well in that area. He has little > spells, > but nothing bad. He also told me there was nothing that can be done > Cognitively. He will continue to deteriorate in that area. And, he is. > > The doctor started to test Don, and Don didn't know the date, (he said 23, > when it was 11th) the month,( he said May) the year, (2006) nor the > season, > (He said fall). And he didn't know the building we were in. They didn't > even > bother with a full test after that. > > Don continues to loose weight even though he eats well. Many on the LBD > List > say the same things about their Loved ones too. Don is pretty hunched > over, > and has a hard time getting out of his chair most of the time. He has > chest > pain and when he is confused or hallucinating he doesn't ring the portable > doorbell that has served so well the past few years. He comes to me. At > least > he knows to lean on me. (for now) > > Below is a letter I wrote to Jeff and Nessy's families. > > Hi children, > > Once again I need to call on you as a group to help clean up the remains > of > the tile laying, and cleaning a spot in the store room to stack the left > over > tile. I hope also that someone can take this extra stick-um stuff back to > the tile store and see if they will give us anything back on it. We also > have a > place that was hidden behind the bathroom cabinet that has mold in it. > > we appreciate your fine meals more than you can know. I did cook > some last week. > > I know you said you would be tied up for a month Jeff, and I know Don B., > that you are too, but if you can, next month, will all of you please get > together and help finish cleaning up this tile? (it's stacked in the front > of the g > arage, along with three big black bags, and a bunch of boards with nails. > The > back patio is a mess from the tile laying, and none of the piled up leaves > have been raked since last fall.) (hey! all we need is a car on concrete > blocks with no tires, to be real Rednecks. I didn't say this to the other > kids > they have been too busy to finish the clean up job right now, and they had > said > this month would be out) > > Don went out in the back yard this morning trying to see if the cat out by > the fence line was all right (a hallucination), and for some reason walked > the > whole area of the back yard, (looking for the cat?) and when he got up > near > the house (what he was doing there is beyond me) he stepped on a loose > brick > (the men that fixed our drain left bricks piled everywhere) and Don fell. > > He came in needing the punctures in his hand cleaned up and bandaged. I > thought that was all, but he took his padded coat off and his arm was a > mess. The > coat is a bloody mess inside. So I bandaged that up. I would hate to think > what would have happened without that heavy coat. > > In the living room he asked if his thigh was alright and I couldn't see a > thing. Later in the kitchen he asked again if his thigh was alright and > pulled > his pants higher. Oh brother! Get more big patches to put there. " Take > your > pants off dear so I can clean them. " An hour later, " Darling will you > change > your pants so I can wash them? " Another hour, Darling you still have your > pants on, will you please change them? " he said, " You never told me too " > > He is becoming very, very confused. He can't do anything around here to > help > me. I asked him to lock the inside door when the nurse was here. He > worried > with the burglar door. I said, " No darling, lock the inside door, " He > messed > with the other door some more. I told him " Honey lock the door in your > other > hand. " He didn't know what I was talking about. Finally after several > tries > when I was just about to get up, his mind cleared enough to lock the door. > He > doesn't know in and out, up and down, to the left or right, or " the other > hand. " If he has an object in both hands he has no idea what to do with > them, > and invariably he'll select the wrong one to do whatever he wanted, If he > remembers what he wanted to do. > > This is just a small, very small, example of how our days are. The nurse > told me to call her anytime. For what? I will get him to the hospital, > pronto! > > Oh I had to do several loads of wash today, and didn't get around to > bathing > Don. It won't be long and someone else will come in and do the bathing. > (That's when I'll call the RN.) He looks terrible. Tomorrow for sure. I > hope he > doesn't go to the hospital tonight. He leaves messes in his underwear, and > he > had a couple days beard on his face. Once he went to the hospital with > mess > in his shorts. It really embarrassed me. I didn't check them before we > left > the house. I had bathed him early, and forgot to check them the last > minute. He > won't wear protective underwear. (YET but he will soon.) > > Let us know if you can do clean up for us next month, please. One > afternoon > like you did last fall will be most helpful, and very much appreciated. > > We sincerely thank you with all our hearts, > Smile it makes your face look so much nicer, and makes your innards feel > good too. > > Love a lot, it's healing, > Mama & Gra'ma Ward > > Litty, I have already received two letters. said it would be her > pleasure to help, and Jeff said he will come by soon. Rose's brother had > brain > surgery today, and it is very hard on the family. He has tumors. Yep, more > than > one as I understand. So Jeff was with them. I don't know if I told you, > Jeff > and Rose live in a duplex in an upscale area, We haven't see it. It has two > bedrooms upstairs. (one for office) > > I am sure there was more I wanted to talk about. Oh yes, the tile is > helping > my allergies a lot, and we have noticed that the dust in the living room > is > down by over 90%. It has been great for me to have the floor. We are > concerned about falling though. Yet, nearly every time I fell I was either > in the > kitchen or bathroom where the floors were hard. > > I know it is going to tear me up for Don and I to have to part when the > time > comes, but by the same token I already mourn for him. I don't have someone > to talk to. To express my thinking to, almost none. I am loosing him right > in > front of my eyes. My dear friend and close companion is fading more all > the > time. And yet, he could get to a plateau and be like this for several years > yet. > > I hope I live a few more good years. With exercise, and a clean house I > should be fine. > > Love so very much dear, > Mama > > So fellow caregivers we are working through " all the problems what be. Or > " all the problems we got " > > I am too swamped to get on the List just yet. But, thought I'd touch base. > > Love a lot with a smile and keep 'em guessing, > Imogene > Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed > with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. > Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. > My precious husband, Don, is taking Zoloft and Razadyne. > A happy personality is contagious. Infect someone today. > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > Quote Link to comment Share on other sites More sharing options...
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