Hello, Dave. I have just read the replies by everyone, and wanted to comment to you personally. I've talked with both Byroney and Carol, who are wonderfully supportive, and have given me such good advice and TLC. I would love to think in terms of living each day as positively as possible. I have been ill for more than 20 years, and disabled for over 11. I am isolated due to my illness, the treatment by my mother's family over her placement, and the fact that I am an only child who took care of both parents. I see my psychiatrist regularly, but talking with a good therapist is not an option. Having worked in the mental health field for years, I've seen the good (very little) and the bad (lots) proffered by therapists/counselors. Talk therapy is not for me. Being sidelined by my health and spending a great deal of time alone lends itself to too much thinking, and I have always lived in my head anyway. There is no closure for the situation AD puts one in; I go through the stages of grief over and over again. I have a ponderous memory, and a high IQ, and feel that I am just losing time because I am unable to physically connect with the world. I am blessed with a wonderful husband who thankfully has a job, which again leaves me too much time alone. I appreciate your caring reply. I've never learned and probably never will learn how to live one day at a time. I'm envious of those who can and do. My mother is declining at a rapid pace, and seeing her destroys me every time I go. I cannot seem to get any semblence of normalcy in my life, and we have other stressors with which to contend. I have been a prisoner of others' needs for a long time, and if I could wake up tomorrow feeling well enough to wash dishes, or just to dress and go out for a while, I would be ecstatic. The loss of dignity for AD patients weighs heavily on my mind, and I realize that we are not promised another day. I appreciate the care in your post, and wish you the best.
Hi, Byroney (and Carol). Haven't been on in a long time, but I have to comment on the good news/bad news category. It seems that there is different data from different studies presented almost weekly now on AD and genetic risk. I get really frustrated by wondering what can be done or should be done by those of us with parental AD. I'm sure I am not alone in being so terrified of AD, and in watching my mother's decline, it continues to destroy me. There is no closure for us who have cared for parents and/or spouses. But there is definitely terror of the future. I wish with all my heart that we didn't have to live in fear of this monster. It makes one feel that we're just here, waiting to die. Sorry to sound so dispirited, but it's impossible to be positive when you know your risk is so much higher since Mom or Dad has/had AD.
Hi, Carol. Just wanted to wish you a happy holiday. And no, the other four children are from her two failed marriages. We are no further along, waiting for him to get a place to live and get Bethany back in school here. Time is flying, he is dragging his feet, and we are back where we have been so many times, taking care of her because there is no one else. But that's what we do because we love her. We aren't perfect, we are no more special than any other grandparents, and we are waiting to be kicked aside again whenever the whim strikes our son. Never a dull moment.
Hi, Carol. These last two weeks, it has seemed things couldn't get worse, but of course they always can. Our grandgirl has been here for two weeks as of yesterday. Her dad, my son (I'm so proud- NOT), informed us two weeks ago when he brought her to us that the woman with whom he lives no longer wants her in that household because she is not like the other four perfect children. Carol, the whole situation is so sordid, so embarassing, and so uncalled-for, and our girl is suffering. He has not moved out of this house, school starts August 25th, our home is not in the school district where she wants to go, and everyone with whom we have spoken thinks he is crazy, and of course we agree. Carol, my husband and I are this child's only stable, safe, loving people with whom she has lived for her entire 11-1/2 years. I can't go into everything here of course, it would take too long, and I am just trying to get through each day, trying to help this child through another rejection, and hoping this will not further damage her. My son is 40 years old, he was not raised to live this way, and we are just stuck. So, you see where I am right now. Just pray for us, keep up in your thoughts, and thank you for being there.
I'll post when I can. Hope you and yours are well.
I've have tried twice tonight to post, have written two long posts, the system threw me out, and I don't have the energy to try again right now. Things are so much worse, not with Mom, but with our granddaughter, and I will have to try again when I feel up to it. I so enjoyed your message, just keep us in your thoughts. I don't know what is going to happen next, but I am afraid I may be headed for a real breakdown if things continue to go down hill. Just please keep us in your thoughts and prayers. Just when you think things can't get worse, they do. I hope you're well. I will try to post soon.
Hi, Carol. I hope you had a lovely weekend. How funny that you have family in Thomasville. That's where I worked for l3 years. It takes 11 minutes to get there from home, and I know it well. I also have family there, lived in High Point for 20 years, 3l years ago, and I also know Sophia. Smithfield is familiar too as we used to go there for the state truck driving championships. Steve actually won overall in l996, and we got a free trip to Columbus, Ohio, 5 star hotel, the whole works. He came in in the top third in the nationals there. It was so much fun. Isn't it a small world. My maiden name was Beck, and one of my best friends is from Thomasville. I have not seen her in almost 24 years as she lost her mind in l987, left her 20 year marriage, three children and completely ruined her life. I've tried to track her down over the years, but that has been fruitless. As for my isolation, it is because I never know when I can get out of bed, so making plans is difficult, and I don't like to go out looking like a hag. Getting ready to go out takes hours, and people who can go and do lose interest really quickly when one has to keep cancelling or just saying no. I have rediscovered a dear friend recently. I am so excited as is she, and am so sad to find out that she is in worse shape than I. She will be 55 next month, and is now on disability, but we talked on the phone for four hours last night, so that makes two people I can actually talk on the phone with. Ain't that pitiful! I did find out through a family member who is related by marriage that Lassie, the dear sister, had rotator cuff surgery a couple of weeks ago, and from what I understand, she is not doing well. She is 69, and she has never really had to deal with much pain, so she may have some time to think about things. Mom is having no visitors at all now, which she doesn't even realize, and she is sleeping so much. She does smile at the staff, and I believe she is happy and content, which does help my frame of mind. If my body would just cooperate, I think I could get back to some semblence of life.
I'll chat with you soon. Have a wonderful, well week.
Hi, Carol. Thanks so much for your encouraging words. I need those so much and it's always wonderful to talk with you, and the few people on the other site. I am so isolated, and I "live in my head" which, if you understand that, is not a good thing. I miss the support and companionship of other females. My British "cousin" is so delightful, and we live countries apart, and I have a long-time friend, the nurse I told you about. There is a lot more to that story. I wish we could talk privately. Could we email or is that something you would prefer not to do?
We live 20 minutes from High Point and Winston-Salem, in Davidson County. Have you ever heard of Lexington barbeque? That would be our town. My hometown, for almost 60 years with a sojourn in High Point for 20 of those. And yes, North Carolina has it all from mountains to coast. It's beautiful.
Hi, Carol. I hope you're well. The unit coordinator finally called me Tuesday afternoon, and said she hadn't called because they were searching for Mom's teeth (for a week, mind you). I was able to talk with her lucidly and calmly, and she was reticent as she always is with me. I am very outspoken, and I have related to her some of Mom's and my history. By outspoken, I mean truthful and expecting reciprocity, which is very hard for many people. I was so upset Monday night after the news that it took some time for me to calm down and try to stuff some food into my mouth. And it's ironic, as this whole incident revolves around food, teeth, and illness--I know, I'm rambling now. Lisa, the coordinator, informed me that Mom does not miss her teeth, which tells me she has progressed much further into the disease. She also said that AD patients tend to remove and lose their teeth. She has not lost her upper plate yet, but that's the one which has always fit well and given her no problem. The fact that she doesn't realize they are gone just breaks my heart. I know what will happen to her facial structure now, and Lisa said we can hope that won't happen. Sometimes I wonder about her. She has this position because her sister-in-law owns the facility, her husband runs it, and it is a family business. I have always questioned her expertise as I'm sure she has no medical degree of any kind, but she does not take care of the patients, which is a good thing. Anyway, that's where we are now. I must force myself to see her if possible this weekend. I did speak with one of my best friends, who works as a nurse in the facility, regarding the candle. I asked if she is aware of much theft in the nursing home, and she said not really, so I'm still left wondering whether to put anything else in Mom's room. I have purchased some really nice things, but I'm not sure what I will do. Lisa said that Mom is "content," that she laughs and smiles, and this absolutely kills me, as the laughing, giggling, happy person is not someone I know. However, if she is content, and knowing that she does not miss her teeth, however awful it sounds, it does give me a little peace. I really worry that I'm going to hell for placing her. I guess everyone feels this way.
I hope you have a lovely weekend. It's so hot here, in the 90s, and I believe summer is finally here. I envy your being in Florida, I love it there, have family and friends there, but with our humidity last summer and heading that way this summer, I guess we'll abide in North Carolina for the time being.
Dear Carol, thanks for the input. I do have a doctor's appointment next Monday, and I also need to see my PCP. I wanted to let you know that the nursing home called about 8 PM tonight. Since I don't get there often, this was not a good call. I always expect bad news, but I'm pretty p'od that someone didn't call me before tonight. Mom's diet was changed around Easter, the reason being that eating was causing a cough, which I noticed on that visit, and I discussed it with the nurse later that week. Occupational therapy was called in, which I knew about. Mom has been having skin tears on her arms, and we have discussed sleeves several times. Dermasleeves were ordered, which she takes off and throws away, which is exactly what I knew would happen. When the nurse called tonight, she told me that Mom's diet has been changed again, ground up now because she is holding the food in her mouth. Now for the kicker: Mom has lost her bottom teeth. They have been missing for a week now. According to the nurse, she has been removing them for some time now, which no one has told me about, and they haven't called until tonight because they have been searching since last Tuesday. Of course, I am so upset over this, as Mom has always been so careful of her teeth, and so modest in her care of them, never wanting them out in anyone's presence. I advised the nurse that I do not want them replaced because I know new ones will cause her discomfort and possible infection. Carol, I cry buckets every day over Mom, and this is just horrific. The nurse who called is a wonderful lady, and I know Mom gets very good care, but I am really shaken by this. And both dear sisters have seen her twice since she lost her teeth, and neither even mentioned it to the staff.
I have been visiting the fibro website, but the suffering sometimes makes my own worse. I have not visited the depression website in depth, but I have been thinking about it.
Thanks for the info. I will keep you posted on things.
This comment is not directed to any specific person. I went to this site (it was mentioned on another website), and to be honest, the material I read was deplorable. I realize that we all need a laugh, a break, support, and defense. However, some of the comments I read were so disrespectable, so juvenile, and so unworthy of adults, be they children, spouses, or otherwise. I read only briefly, and was ashamed of myself for even entertaining the thought of sharing any of my own experiences. I went to the site several weeks ago, and no one on the web I was visiting commented whether or not they viewed it. As stated, I mean no offense to anyone, but I believe there is a limit to how you react and share your involvement with this montrous disease.
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