Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 mom, i completely understand you feel like you are totally deserting him, but he has sharon there to adapt him to the routine, it will take a lttle more time for him to help him adjust. i can only imagine the pain of being separarted form your loved one, donnie and i have been separatted form each other for 5 weeks now and he is streesing out worrying about me and my health and i am worrying about him. your letters to teh group you certainly sound very strong, and i know you have a ton of deicisions to make, whether to stay or move, whether to let your granddaughter stay at your place or not. mom, please do not make ANY decisions in haste, just like too many cooks in hte kitchen ruin the dinner, too many opinions about what YOU should do with YOUR life makes it confusing. i pray for you to have teh strength to make the right decision at teh right time. the decision that is best for you and for Don the love you to share is immeasurable and eternal as well, please know that i think of you often and pray for you both too, hugs. sharon . -- Subject: Re: cybermom To: LBDcaregivers Date: Friday, August 22, 2008, 4:35 AM Does it sound as it I am getting better, dear Sharon? Well let me send you a copy I sent to some one else. You'll really see where I'm at. I love you too, honey, you take care and best to Donnie. **** I am so glad that Don has a daughter to care for him. She is one fine girl. She was called by the nursing home at one o'clock yesterday morning that her daddy was crazy, and was going home, plus other things. Don knew the nurse was talking to Sharon, and he demanded to talk. She said he was as crazy as a bat. He still is this morning. She told me before I talked to him that he was crazy. Off the wall. (He demonstrated he was delusional, paranoid, and psychotic to me) He had been put on Remeron by his doctor here in town. Well, it didn't work. He is on the Excelon patch too. When I talked to him he was in a much better mood (they didn't give him Remeron this morning) and he had been listening to a small band that comes into the nursing home once in a while and that helped get a better mood going. He begged me to come see him, He said, " Honey I HAVE to see you, " over and over again. But, then he laughed about the fine doctor being on a dresser and he was on another one when they talked. He talked about one woman that had to be removed from the group. And about a flood. Everything was flooded. He jumped from one thing to another and had them all mixed up together. Yes, he was crazy. It tears me up. I talked to Sharon (his daughter) again now for the third or fourth time, and asked if it would help for me to be there to help keep him in a better mood. She said, " Not at all. " I told her how he had made me so sick on the last visit. She said last night was the first she had seen him like this. I said no, that when I was up there, 13th- 15th, I never went through so much with him in my life. She told me not to move up there as he forgets as soon as I am away. She is filling in where I would normally be. It is true as Don wants to talk to her, and when he is out of the home he wants to go back. I have seen that myself. Don feels safe with his daughter, since she is a nurse. She sure knows how to calm him down. She will be very close to him, and make sure he is looking her directly in the face, and then she says, tell me what is the matter. He will tell her just like a meek little child. Then she assures him it is fine, and not to worry. He did say he would worry if he wants too. I want to be with him, and I can't stand to take all of his terrible abuse. It crushes me. I take it all very personally even though I know I shouldn't. He has been highly agitated. I asked Sharon if they will kick him out of the nursing home if he gets violent? She said no. Restraints? Oh no! She didn't say that. I'm just thinking that. He will start having our newspaper, and he was glad for that. They hadn't gotten to it yet. Don said he saw two papers in wrappers, but didn't know one was his. He always follows up anything I say, and says something about already knowing it, or he had already done that, anything to make him look normal. I smile about that. The paper was always part of his morning routine, even if he only looked at the main titles on the first two pages. That normal routine is what he misses. I came home and was too sick to do anything. I still am. I was up there Wednesday, Thursday, and Friday last week. He has always fussed at me on the phone to get him out of there. He is urinating on his wall. A small pillow was on the floor. I picked it up and it was wet. I looked at the floor, and it was yellow. I wiped it and it was urine. This time I saw more streaks running down the wall. But, frankly I don't doubt it, because he gets confused with the drape hanging, and if he can get around it, then the bathroom door is backwards. In his confused state he can't figure out how to get around that curtain that is blocking the backward door. Poor baby. I watched him try it, and he was as confused as all get out, with that curtain. If it's moved then he can't see his little TV. That corner where his chair is stinks. Thank goodness he has lost a lot of his sense of smell. But, I wonder what is behind that chair in the corner, that the cleaning crew isn't cleaning? I'll have to point it out. What about the chair itself? Oh goodness, I'll be replacing the chair one of these days. I only smelled it when I laid back in the chair. I found a small key chain with Don's name on it. So, when his fake keys are lost, the staff brings them back. Are they having fun yet? One thing that went through the wash and hasn't been returned were two wallet pictures of me. There was no name on them, and I am sure they were ruined anyway. His daughter put up a nice board to write on and she put on it, " This is Wednesday. Imogene is coming today. " She also has a couple of photos of all her grandkids on his lap, and another of me with one of the babies. They are kept on the board with nice magnets. It is a really nice writing board. All it takes to clean it is a Kleenex. When I visited I was bombarded with fussing! When are you taking me out of this%#$@ place? ( He doesn't normally cuss) What have you been up to? Who are you seeing? Where is my money? Why don't you give me any money? Are you spending it on boyfriends? I want out of here! On an on for hours. I couldn't find answers. I just wanted to cry, but I didn't. I tried to comfort him, and reassure him, and tell him I love him. " Well if you do why the @%$ & * am I still in here? You pulled a fast one on me and slipped me in here, and now I am in prison. I can't go out the door. If you don't take me home I'm getting a cab. What is our address so I can go home. " Then he gets a pen after a long search, and tries to write, and can't. I did remind him that he saw the doctor and signed the papers, and that he was lucid. Don was always sweet, except he started talking suicide, and fussing about getting out, but it progressed very badly when they changed from Razadyne to Excelon. Of course his doctor here in town said they should increase the Excelon dosage as quickly as they can. I guess he knew Don would get this way on a low beginning dose, along with making a sudden switch in medicines. Now I learn that the doctor had prescribed Remeron, and that is when Don went totally nuts. So he is off it now. That is one thing about these medicines. One may work or it could send him into a Neuroleptic Malignant Syndrome, which as you know, can be fatal if the medicine isn't removed soon enough. There is no way I can move up there near Don. I wanted to, but I am still sick from the last trip. I wrestled with the thought of moving and locating an apartment for a month now, and my Daughter wanted me to move, so that her daughter could live in my house, so I sure didn't get the proper advice from her. Tonight, I was able to pin my son to the phone for about thirty minutes. His answer, " Mom you are not able to do that. Your health is too fragile. " I wanted someone to tell me what I knew. I was glad he did. He continued, " You always tackle more than you can handle and it makes you sick. " That is true, too. Don used to know that, and tell me that all the time. Tonight, Don wanted me to go up there and get him right now! I said, " Honey I am too sick from my trip on the last visit. " He growled, " You are always sick. " He demanded, " Now, I said come and get me! " I told him it was night already. Then I had to give my address and phone number. He was going to call a cab. He hollered to the owner of the NH to get him a pen to write with. He worried with getting all the numbers over and over again, about five times. Finally he said, " We can't talk there are too many ears, so go to bed. " I think he got tired. He will be alright. He is off the Remeron, and is relying on Sharon. So, I am not going to worry all that much. (tell yourself Imogene) I know he is going to get worse. ly, this may sound bad, but I hope it ends for him sooner with a heart attack or something. This is terrible, and we can be sure Don is really having a time of it. If it's beating us down, who can think, what is it doing to him who has a sick mind and can't get away from it? He knows he is sick, and has told me some of the struggles he has. So all his fussing at me is a small reflection of all the turmoil going on in his mind. (I can hardly stand this happening to my Darling) Poor Don feels as if I don't want him anymore. It is breaking my heart. He decided where he wanted to go, and was adamant about not being in the nursing home here, he said he wanted to be with Sharon. We didn't talk about my moving up there, until after he was placed. So now, the pain of separation is huge. My heart is breaking for him. Sharon and Jeff told me not to move, yet, I feel as if I am putting far too much stress on him by my not being there. But, what was it doing to me to listen to his ranting and raving about everything that neither of us have any control over? What does it do to me to have to dress every day and get out to see him? I don't feel like going to the store most of the time. I know I can't handle it, and yet feel guilty for not moving. The pain of missing him is tremendous! And I know it is for him too. And, he does not have the reasoning power to cope with it. So that is where I feel as if I need to try. But, you see there I go again trying to do more than I am able. Oh the turmoil! Can you imagine being separated from your Loved One when she/he is sick? It is just about more than I can bear. I just talked to Sharon, and she said he was happy today, and doing well. He wasn't that well when I talked to him, but then he never is with me, because he wants me to get him out of there. I asked Sharon again, for the umpteenth time, if I should move and she said " No. " She said it won't be long that he won't know me or anyone. I know that. Once he already asked me who I was in a very serious manner. I told him my name and he wanted to know how we were related. No matter how we cut it he is going to suffer, and I can't stop it. My heart is torn to pieces. I am so sorry to write such a mixed emotional letter, Not knowing what to do. Never being settled in my mind and emotions about all this, but I write how I think and feel. The road we are on doesn't feel one bit good. Every part of it hurts. Don loves getting cards once in a while, so I am doing that. That is positive. I inserted a photo of me in one. I asked if he liked it? He said yes and no, because it just made me want to go home in the worst way. On days that I feel better I am sure I will move near Don, and then today on the phone he was totally out of it. Some friends said they called later and he was not so bad. Sometimes I wish so much that I had him at home. Now, you know why you haven't been hearing from me. I have been in a state that won't quit, and I don't mean the state of Texas. Love somebody, namely me. (grin) Imogene > > > > Imogene there are many experiences that show how cruel this disease > is, and > > this is one of the most poignant and painful...I' m praying for you > both > > daily... > > > > His, > > Sherry > > www.owly.net > > daughter of , (mis?)diagnosed with AD in 2005, descent slowed > by > > Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile > from my > > house. We're learning to live with Lewy... > > > > ----- Original Message ----- > > From: <Iward27663@ ...> > > > My darling Don is getting quite ill. He has to be told things in > very > > > short > > > sentences > > > and just what to do each step of the way. The nurse was giving > him his > > > medicine this morning. She dumped three pills in his hand and he > put them > > > in his > > > mouth. Then he reached for more and she told him three times to > drink some > > > water and swallow the pills in his mouth. Then she handed him a > couple > > > more, and > > > they went through the whole process again. Finally he took the > last pills. > > > His food has to be cut up for him, and toast buttered, and jelly > put on > > > it. He > > > is completely bathed and shaved by staff. He has fallen twice. > Also, he > > > seems > > > to be getting a groin hernia. His daughter said she will tell > the doctor > > > when he came in today. > > > > > > I took him out shopping, and then went to the Motel to stretch > out a > > > while, > > > where it was quiet, as he fussed about the noise in the NH. > Well, within > > > fifteen minutes he had to head back to the NH. His daughter said > good, he > > > is > > > feeling like this is home now. > > > > > > When Don kept bitching about everything, I said honey you have it > a lot > > > better than some. He fussed negative about everything, and asked > how I > > > could think > > > that? I said honey you could be dead. Your first wife died in > her sleep. > > > ( > > > wrong thing to do! but I didn't know how sick he really was.) He > cried a > > > few > > > seconds, and then said my wife has died and you are chasing after > other > > > men. > > > He continued with how much more do I need? That hurt so bad. > > > > > > The next morning, still not realizing how really sick he was I > wrote our > > > medical bills down and told him I needed to pay those bills off > before I > > > can > > > move. He wanted to show his daughter the paper right now, and > see if she > > > could > > > find a solution to the problem. I then, knew how sick he was as > I have > > > handled > > > the bills for thirty-eight years. I was glad to see that he was > relying > > > on > > > her, and feels secure with the nurses. > > > > > > The first afternoon I was there, he was thrilled to see me. > Then, that > > > night > > > I couldn't sleep. Bad bed in the motel. > > > > > > You guessed it! The next day is the day he laid into me about > taking all > > > his > > > money (what money?) and running around, and flirting with all > the men. I > > > endured hours of his abusive tongue. I wanted to be with him, > but, my > > > nerves were > > > shattered. I did all I could to divert his attention. Took him > shopping, > > > but > > > he got too weak from that. > > > > > > Again, the second night even after folding the heavy bedspread > in half > > > and > > > putting it under my sheet, I still didn't sleep! I went to > sleep after > > > midnight, and woke up at four. So I packed it all up, and headed > back to > > > the > > > nursing home. This time I wasn't offered any breakfast, and I > didn't want > > > to rock > > > the boat with Don. So, I kept quiet. I told him I wanted to > drive home > > > early > > > before it got hot. I reassured him of my love again, and again > before I > > > left. > > > I am exhausted!! > > > > > > I will not tear my life up, only to have him become so sick he > doesn't > > > even > > > know me. One time he asked who I was. When I told him, he asked > if I was > > > related to him in some way? > > > > > > This is so hard it is wrecking me, but I made up my mind that I > was not > > > going to move up there, as he is relying on his daughter, for > which I am > > > glad. > > > And I can sense our parting has arrived. It is so terribly hard, > but my > > > moving > > > up there, and signing a year's lease is not very practical. The > rent is > > > terribly high, and I need the money to pay Don's medical bills. > So, the > > > best thing > > > for him, and me, is to make an occasional visit. When I see him > he starts > > > fussing to go home, and yet, twice he wanted to go back to the > nursing > > > home, > > > within 15 to 20 minutes. He is getting excellent care, and > excellent food. > > > > > > Twice last week when I called him, he laid the phone down to get > > > something > > > or to get his daughter. I finally had to hand up, and call the > nurses > > > station > > > to tell them the phone was off the hook. > > > > > > He said I don't think anyone here likes me. He said one minute > they are > > > friendly, and the next they seem to shun me. I said Darling just > about > > > everyone > > > here has a mental disorder, and that makes them act that way. He > accepted > > > that. > > > > > > He is getting adjusted, and is relying on the nurses, and > especially his > > > daughter, > > > so I know he is in the best of care. And, yes, they are LBD > savvy. > > > > > > I don't know how we became so fortunate in getting on Medicaid > so easily, > > > and getting into the NH without being in the hospital for three > days > > > first. > > > And, we won't be charged anything for the first month, as it is > usually > > > covered > > > by Medicare, but it has been worked out for us that they back > dated his > > > entry > > > (I guess, how else?) and now he gets it all on Medicaid. He has > caring > > > staff, and is cared for. That one day I questioned, they were > short > > > handed but did > > > give him a bath that evening. > > > > > > I love him dearly, but love is realizing what is best for that > person, > > > and > > > letting them > > > go, in a sense. I am mourning the departure of my beloved, even > though he > > > is > > > still here in the flesh. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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