Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Betty, don't ever feel that you are boring folks! This site is a life boat for many folks. I have been " lurking " myself lately as I have alot going on and sometimes feel like I can hardly think straight! Somedays the only thing keeping me going is Sandie and Courage's antics and whoever they take along for their rides on those days!! Sandie and a few others are better with words but I felt like I had to reply. I think that sometimes just venting helps alot. My mom has been almost secretive about my dad and that really concerns me. Now that she is back in NY I feel like I am getting even less info out of her than before. Beth(NY) got to spend a week with them and was really shocked at my dads looks. Alot of weight gain, swollen legs, his remaining teeth are becoming rotten, but as far as his mental health she said that dad appears to be normal. She said she could hear Russ now about how an LBD patient keeps up a front, but Beth said he could pass for " normal " if you didn't know anything was wrong. I'm very concerned about my mom, though, as she sounds just as tired as she did before. She kept blaming it on the Southern heat but I think she is just plain worn out. Be glad for the physical hugs, I am so jealous of those going to the Conference in Aug. Oh, well, someday my rowboat will come in and I can have my pick-up truck and drive myself out that way and join Sandie and on their way up to Canada! Be careful, Betty, and really watch out for your physical and mental health. So many people are pulling for and looking out for each other. Well, I'll quit rambling for now. Don't hide so long next time!! Hugs and prayers, in hot, humid, muggy SC > Hi All, > > So much has gone on since my last post, it is difficult to find a starting > point. What brought me back (there are many reasons) was a website I found > while browsing the AARP website. It is called Fathom and is an online learning > source. One particular article caught my attention and thought you all might > find it helpful. It is about stress and a " Quick Calm " way to dissolve it. The > lesson is also on audio. I'll list the link below. On the left side of the > Fathom home page, click on Health & Medicine. If you click on either the > Physiology and Human Biology or Mental Health link, it will bring up the " Quick > Calm " lesson. Hope you get some time to check out the other online lessons. > > AARP: Fathom Archives > http://www.aarp.org/tools/partner? url=http://www.fathom.com > > I took a break on posting just after my mom had a heart attack in mid-May. I > have managed to finally catch up with all the posts. Lots of newcomers in > the last six weeks. It is great to see Russ continuing his participation. This > group has also been blessed by another generous & knowledgeable soul, Geri. > Thought I'd start at the beginning, some for the newcomers, and some as I need > the release. > > My mom, Marjory (79) was diagnosed with the general term 'dementia' during > the fall of last year. She has lived in my home since 1994, with a two year > break from '98 to 2000 when she went to live with my brother after we had our > first major mother-daughter argument. It was during this time when she was > drinking quite regularly that she had the first symptoms of visual hallucinations. > I found this out from her boyfriend who she stayed with every weekend from > Fri till Mon since 1994 up until January of 2002. She also drank during on the > weekends with her BF. When she was at home with me, she never had anything > around. During the fall of 2001, she was coming home from her weekends with BF > and began telling me bizarre stories of machines attached to people's heads, > nurses climbing in bed with them at night, among various other hallucinations. > As she was suffering these toward the end of the weekend drinking bouts, the > research I found lead me to believe she was having alcoholic delirious > tremens. This continued for several months until her BF asked that she take care of > her problem before spending anymore time at his house. At the time of onset > of these symptoms, he had just had his son with MS move into his home, coming > from Wyoming, giving up his independence. It also was the same time Mom lost > the last of her 4 cats (within one year), all living to be 18-19 years old. > January 2002 I took Mom to the doctor, had MRI done, found low thyroid and > high cholesterol. With the advice of the Dr. to stop drinking, Mom did so for > about 7 months and then started again a month before I went to Texas to see my > dad in mid-September of last year. By the time I was to leave, she was going > downhill fast and when I returned, she was in a full blown psychosis. For a > month my home was the twilight zone with my mom as central character. By the > end of October, I had her admitted into a Gero-psychiatric ward in a hospital > in Seattle, about 90 miles from our home. She was briefly in another gero-psyc > ward before Seattle, a voluntary one, but she tried to escape the first night > and became violent with her hands and throwing chairs. Hence the transfer to > an involuntary unit. All the tests were run, she was placed on medication, > risperidone and Trazodone, and after two weeks, I was told she should go into > 24 hour care. I brought her home. > > Fortunately, I had scheduled surgery for the beginning of October on both my > feet. I knew I would be off work for several months so I had time to decide > what to do with Mom. He motor symptoms became progressively worse with her use > of risperidone. > She needed help dressing, bathing, etc. In December, she had cataract > surgery. I definitely helped the visual hallucinations, but the auditory ones have > been with her constantly since the beginning. This could be due to the fact > she has severe hearing loss, hearing aids for both ears, (she'll only wear one) > and has isolated herself from social events as she cannot follow > conversations well. > > My feet healed slower than anticipated and I didn't return to work until > March of this year. Then I only worked part-time in the afternoons and evenings > when someone would be there for Mom. I had given up a full time management > position to part-time sales at minimum wage. With my SO (significant other) > contributing and the meager contributions of the several young adults living here, > I figured we could make it work. > > I found this group on Feb 22 this year, Mom's 79th BD. It was a gift from > heaven for both her and myself. I need that gift again. My world is crumbling. > It has taken me three days to get this far on this post. Up until about 6 > weeks ago, I was quite a regular on this site. My enthusiasm has not waned > since then; life has just been happening to fast. On a stress test, I'm off the > scale. There is not one situation that has happened, that hasn't been > followed closely by another. I barely adjust and find I have to adjust again. There > is a meaning to all this, it is not real obvious to me right now. The one > thing that is for certain, I've been cutting myself off from the support I have > needed so badly. No longer can I " do it all myself " if there is any self left > at this point. > > In May I had the honor of going to Sacramento, CA to a caregiver's > conference. The highlight was meeting three fellow LBDCaregivers there, Jan, Jim and > . Before I left, my mom was at a very low point, sleeping a lot and barely > eating. It is so hard to know what is LBD and what could be signs of > something worse. While at the conference, my mom was taken to emergency and > discovered she had had a heart attack, in addition to having extremely low blood > pressure, pneumonia, and a firm diagnosis of emphysema. I changed my tickets and > took an earlier flight home. That goodbye hug from Jan has sustained me for a > long time. > > Mom was in the hospital for 8 days. When she came home, so did the oxygen > tanks and all the related trimmings. We had to use a nebulizer with Albuterol > for 4-5 times a day. The best thing that happened in the hospital was Mom > being taken off her previous meds, to be put on Exelon, what I had been badgering > her Dr. to try as it has taken a long time to get appt with neurologist and > with heart attack, had to be delayed again. It is scheduled in another few > weeks. > > Three weeks after being home, Mom took herself off the oxygen. She had been > doing it secretly for several nights. An appointment at the Dr. later that > week showed her oxygen saturation a 96% at rest and 94% after walking up and > down the hall. He said as long as she doesn't have any angina or shortness of > breath, she could stay off. All the equipment is still here, just in case. The > same day she stopped the oxygen, she started smoking. It has been downhill > since. At first, I tried limiting the number of cigarettes she had per day. > This got to be a real drag. > no pun intended. Mom has been a smoker for 65 years and I am now learning > that it is her only true love. When given a full pack, she will smoke one after > another. The loss of oxygen has only served to increase her auditory > hallucinations. I quit giving her a full pack. Now she constantly, and I mean > constantly goes to everyone in the house, and who comes to the house, asking for > cigarettes. Last week she told me she wasn't going to eat what I made her for > meals as I was poisoning her. Then she quit taking her Exelon and Synthroid. > So, I quit giving her cigarettes. She didn't get dressed for two days, and > wouldn't eat. Last night my son brought over some hamburgers and got her to eat > one. Then she took her pills. Then she got a cigarette. This morning she > was up at her usual early time, (she had been sleeping in until 11am and after. > She had breakfast and I coaxed her with a cigarette to get dressed. I hate > this! The very thing that makes her worse, she craves the most. > > So much for life with Mom and on to the imprisonment of Betty. So much has > happened around me that I have no control over, yet the effects have been > profound. I quit my job in May as the paperwork was complete for me to be an > independent provider of care for my mom. I began on June 2nd and have yet to get > my first paycheck. My SO (significant other) left at the end of May, with no > explanation, and eliminated the major financial resource this house has > depended on. My youngest son and his girlfriend moved out also in June. That leaves > me with my oldest son who works sometimes 14 hrs a day in construction and > his friend who works odd hours with the tides at his father's clam & oyster > company. There is virtually no assistance for me now when I need to get away for > any reason. Several weeks ago, I had cousins come to visit from CA. One > drove up with her son and the other I picked up at the airport in Seattle. On the > way home, the transmission went out in my car. It has been over two weeks > and the repair still hasn't been authorized by the warranty company so that I > can get a rental for a few days. Life has been difficult to say the least. > > To top it all off, I have been in a deep depression. I increased my > antidepressant as I was only taking half the 200 mg dosage, up to 150 mg now. I'm not > feeling much better, but not any worse either. I'm just waiting for the next > bomb to drop. I have to start finding ways to cut the budget severely and > part of that is giving up my health insurance. I was only paying $75 a month > for full medical, dental, & vision. The copay was nil as I was in a preferred > network. Now, after giving up full-time, I can pick up Cobra coverage at $220 > a month. The is no question I can afford it when I don't know if I can even > maintain my mortgage payment. The loss of my SO was something that had been > occurring for years. It was my ex-husband of 23 years that had been living > here. To be honest, it was the final chapter of a story we've been trying to end > for several years. Although the stress of that relationship has finally > begun the healing process, but all the other consequences of that finality have > taken their toll. Wow, talk about rambling.....guess it all needed to come out > cuz, guess what? I already feel better after writing this. Hope it didn't > bore you to much. > > I could go on....but will save for other posts. This one is behind me and I > feel maybe it will be less of a battle from here on...with the help of this > group. I know I can't do it alone. Don't know why I tried. So I'm back, > perhaps a bit more humble, but like they say, it takes what it takes. > > Love & Prayers to All > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 , It was so nice to hear from you. I have followed both your and Beth's posts. There were so many things I could relate to. The knowing without really knowing. Those moments in time that are such blessings but beyond human explanation, these I have experienced all too often and in many different modes. I speak little of them, there are too few who really understand. The secret is to remain open and teachable. And it is wonderful when the spirit communicates with messages unspoken. The subtle signs often come and go so quickly. I am not surprised at what is going on in my life. It has been relayed to me in so many different ways what my tasks would be and that I would be doing them alone. OK, now what!! Just taking it day by day and listening and watching and waiting and praying, praying praying. A trip to Canada sounds like a lot of fun. I even got out the atlas to see exactly where Toronto was located. Just a hop, skip and jump across North America. I haven't raised any hell for a long, long time. Maybe it's just about time. Glad to see you posting too. Take care of you and yours. Love & Prayers Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Betty I'm so glad you have come back for some active support. I know you've been busy with a lot of things but this is where we all started and you're story I'm sure has made a lot of folks take a good look at their own situations and make a collective sigh of 'thank God that's not me' in addition to sending their love. What can I say. In the words of my grandson, " That really sucks! " Although this will undoubtedly make you a better person, (we're promised that right?) the trip sounds like a real bummer. It's hard when you've already met someone, especially someone of your character and strength, because you know there's only one thing left to do and that's give you a big hug. So here it is..... (((((((((((((((((Betty)))))))))))))))) I know you don't need advice on how to handle things because you have the knowledge and definately the brain to put it all to work. Keep yourself centered, Betty. There's a plan...you know that, now you have to trust it. Post more often. It warms my heart to know you're reaching out to your safe place. A million hugs, Jan Sacramento CA or something like that, guess we get busy and forget > So much has gone on since my last post, it is difficult to find a starting > point. What brought me back (there are many reasons) was a website I found > while browsing the AARP website. It is called Fathom and is an online learning > source. One particular article caught my attention and thought you all might > find it helpful. It is about stress and a " Quick Calm " way to dissolve it. The > lesson is also on audio. I'll list the link below. On the left side of the > Fathom home page, click on Health & Medicine. If you click on either the > Physiology and Human Biology or Mental Health link, it will bring up the " Quick > Calm " lesson. Hope you get some time to check out the other online lessons. > > AARP: Fathom Archives > http://www.aarp.org/tools/partner? url=http://www.fathom.com > > I took a break on posting just after my mom had a heart attack in mid-May. I > have managed to finally catch up with all the posts. Lots of newcomers in > the last six weeks. It is great to see Russ continuing his participation. This > group has also been blessed by another generous & knowledgeable soul, Geri. > Thought I'd start at the beginning, some for the newcomers, and some as I need > the release. > > My mom, Marjory (79) was diagnosed with the general term 'dementia' during > the fall of last year. She has lived in my home since 1994, with a two year > break from '98 to 2000 when she went to live with my brother after we had our > first major mother-daughter argument. It was during this time when she was > drinking quite regularly that she had the first symptoms of visual hallucinations. > I found this out from her boyfriend who she stayed with every weekend from > Fri till Mon since 1994 up until January of 2002. She also drank during on the > weekends with her BF. When she was at home with me, she never had anything > around. During the fall of 2001, she was coming home from her weekends with BF > and began telling me bizarre stories of machines attached to people's heads, > nurses climbing in bed with them at night, among various other hallucinations. > As she was suffering these toward the end of the weekend drinking bouts, the > research I found lead me to believe she was having alcoholic delirious > tremens. This continued for several months until her BF asked that she take care of > her problem before spending anymore time at his house. At the time of onset > of these symptoms, he had just had his son with MS move into his home, coming > from Wyoming, giving up his independence. It also was the same time Mom lost > the last of her 4 cats (within one year), all living to be 18-19 years old. > January 2002 I took Mom to the doctor, had MRI done, found low thyroid and > high cholesterol. With the advice of the Dr. to stop drinking, Mom did so for > about 7 months and then started again a month before I went to Texas to see my > dad in mid-September of last year. By the time I was to leave, she was going > downhill fast and when I returned, she was in a full blown psychosis. For a > month my home was the twilight zone with my mom as central character. By the > end of October, I had her admitted into a Gero-psychiatric ward in a hospital > in Seattle, about 90 miles from our home. She was briefly in another gero-psyc > ward before Seattle, a voluntary one, but she tried to escape the first night > and became violent with her hands and throwing chairs. Hence the transfer to > an involuntary unit. All the tests were run, she was placed on medication, > risperidone and Trazodone, and after two weeks, I was told she should go into > 24 hour care. I brought her home. > > Fortunately, I had scheduled surgery for the beginning of October on both my > feet. I knew I would be off work for several months so I had time to decide > what to do with Mom. He motor symptoms became progressively worse with her use > of risperidone. > She needed help dressing, bathing, etc. In December, she had cataract > surgery. I definitely helped the visual hallucinations, but the auditory ones have > been with her constantly since the beginning. This could be due to the fact > she has severe hearing loss, hearing aids for both ears, (she'll only wear one) > and has isolated herself from social events as she cannot follow > conversations well. > > My feet healed slower than anticipated and I didn't return to work until > March of this year. Then I only worked part-time in the afternoons and evenings > when someone would be there for Mom. I had given up a full time management > position to part-time sales at minimum wage. With my SO (significant other) > contributing and the meager contributions of the several young adults living here, > I figured we could make it work. > > I found this group on Feb 22 this year, Mom's 79th BD. It was a gift from > heaven for both her and myself. I need that gift again. My world is crumbling. > It has taken me three days to get this far on this post. Up until about 6 > weeks ago, I was quite a regular on this site. My enthusiasm has not waned > since then; life has just been happening to fast. On a stress test, I'm off the > scale. There is not one situation that has happened, that hasn't been > followed closely by another. I barely adjust and find I have to adjust again. There > is a meaning to all this, it is not real obvious to me right now. The one > thing that is for certain, I've been cutting myself off from the support I have > needed so badly. No longer can I " do it all myself " if there is any self left > at this point. > > In May I had the honor of going to Sacramento, CA to a caregiver's > conference. The highlight was meeting three fellow LBDCaregivers there, Jan, Jim and > . Before I left, my mom was at a very low point, sleeping a lot and barely > eating. It is so hard to know what is LBD and what could be signs of > something worse. While at the conference, my mom was taken to emergency and > discovered she had had a heart attack, in addition to having extremely low blood > pressure, pneumonia, and a firm diagnosis of emphysema. I changed my tickets and > took an earlier flight home. That goodbye hug from Jan has sustained me for a > long time. > > Mom was in the hospital for 8 days. When she came home, so did the oxygen > tanks and all the related trimmings. We had to use a nebulizer with Albuterol > for 4-5 times a day. The best thing that happened in the hospital was Mom > being taken off her previous meds, to be put on Exelon, what I had been badgering > her Dr. to try as it has taken a long time to get appt with neurologist and > with heart attack, had to be delayed again. It is scheduled in another few > weeks. > > Three weeks after being home, Mom took herself off the oxygen. She had been > doing it secretly for several nights. An appointment at the Dr. later that > week showed her oxygen saturation a 96% at rest and 94% after walking up and > down the hall. He said as long as she doesn't have any angina or shortness of > breath, she could stay off. All the equipment is still here, just in case. The > same day she stopped the oxygen, she started smoking. It has been downhill > since. At first, I tried limiting the number of cigarettes she had per day. > This got to be a real drag. > no pun intended. Mom has been a smoker for 65 years and I am now learning > that it is her only true love. When given a full pack, she will smoke one after > another. The loss of oxygen has only served to increase her auditory > hallucinations. I quit giving her a full pack. Now she constantly, and I mean > constantly goes to everyone in the house, and who comes to the house, asking for > cigarettes. Last week she told me she wasn't going to eat what I made her for > meals as I was poisoning her. Then she quit taking her Exelon and Synthroid. > So, I quit giving her cigarettes. She didn't get dressed for two days, and > wouldn't eat. Last night my son brought over some hamburgers and got her to eat > one. Then she took her pills. Then she got a cigarette. This morning she > was up at her usual early time, (she had been sleeping in until 11am and after. > She had breakfast and I coaxed her with a cigarette to get dressed. I hate > this! The very thing that makes her worse, she craves the most. > > So much for life with Mom and on to the imprisonment of Betty. So much has > happened around me that I have no control over, yet the effects have been > profound. I quit my job in May as the paperwork was complete for me to be an > independent provider of care for my mom. I began on June 2nd and have yet to get > my first paycheck. My SO (significant other) left at the end of May, with no > explanation, and eliminated the major financial resource this house has > depended on. My youngest son and his girlfriend moved out also in June. That leaves > me with my oldest son who works sometimes 14 hrs a day in construction and > his friend who works odd hours with the tides at his father's clam & oyster > company. There is virtually no assistance for me now when I need to get away for > any reason. Several weeks ago, I had cousins come to visit from CA. One > drove up with her son and the other I picked up at the airport in Seattle. On the > way home, the transmission went out in my car. It has been over two weeks > and the repair still hasn't been authorized by the warranty company so that I > can get a rental for a few days. Life has been difficult to say the least. > > To top it all off, I have been in a deep depression. I increased my > antidepressant as I was only taking half the 200 mg dosage, up to 150 mg now. I'm not > feeling much better, but not any worse either. I'm just waiting for the next > bomb to drop. I have to start finding ways to cut the budget severely and > part of that is giving up my health insurance. I was only paying $75 a month > for full medical, dental, & vision. The copay was nil as I was in a preferred > network. Now, after giving up full-time, I can pick up Cobra coverage at $220 > a month. The is no question I can afford it when I don't know if I can even > maintain my mortgage payment. The loss of my SO was something that had been > occurring for years. It was my ex-husband of 23 years that had been living > here. To be honest, it was the final chapter of a story we've been trying to end > for several years. Although the stress of that relationship has finally > begun the healing process, but all the other consequences of that finality have > taken their toll. Wow, talk about rambling.....guess it all needed to come out > cuz, guess what? I already feel better after writing this. Hope it didn't > bore you to much. > > I could go on....but will save for other posts. This one is behind me and I > feel maybe it will be less of a battle from here on...with the help of this > group. I know I can't do it alone. Don't know why I tried. So I'm back, > perhaps a bit more humble, but like they say, it takes what it takes. > > Love & Prayers to All > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 ---Betty, I had to laugh about the atlas as I did the same thing about a week ago. Beth(NY) and I were talking a few weeks ago about how we quite often would find a Canadian coin mixed in with our change growing up. The stores would gladly give it to you as change but if you tried to pay them with Canadian coin they would quite often catch it. Some soda machines would take them and some wouldn't. It is nice to have someone admit that extra " sense " that some of us are blessed/cursed with. My mom is slowly admitting that there is " something " that seems to run in the family. She always brushed us off before. Well, it's my youngests bday today so I better not ramble long. Keep in touch with us and make sure you watch out for you! Love and prayers, In LBDcaregivers , elswittnbrg53@c... wrote: > , > > It was so nice to hear from you. I have followed both your and Beth's posts. > There were so many things I could relate to. The knowing without really > knowing. Those moments in time that are such blessings but beyond human > explanation, these I have experienced all too often and in many different modes. I > speak little of them, there are too few who really understand. The secret is to > remain open and teachable. And it is wonderful when the spirit communicates > with messages unspoken. The subtle signs often come and go so quickly. I am > not surprised at what is going on in my life. It has been relayed to me in so > many different ways what my tasks would be and that I would be doing them > alone. OK, now what!! > Just taking it day by day and listening and watching and waiting and praying, > praying praying. > > A trip to Canada sounds like a lot of fun. I even got out the atlas to see > exactly where Toronto was located. Just a hop, skip and jump across North > America. > I haven't raised any hell for a long, long time. Maybe it's just about time. > > Glad to see you posting too. Take care of you and yours. > > Love & Prayers > Betty > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Betty, I'm so glad you shared what is happening in your life with us - you have been through quite a lot lately. My heart goes out to you and I wish I were there personally to help you and give you support. I'm also glad that you felt better having written and hope some of the stress lifted. We concentrate so much on our LO's that we often forget about us and taking care of them means taking care of us too. Please let me (us) know how you are doing. I am sending you positive energy, strength and you are in my thoughts. Courage Long time, no post... >Hi All, > >So much has gone on since my last post, it is difficult to find a starting >point. What brought me back (there are many reasons) was a website I found >while browsing the AARP website. It is called Fathom and is an online learning >source. One particular article caught my attention and thought you all might >find it helpful. It is about stress and a " Quick Calm " way to dissolve it. The >lesson is also on audio. I'll list the link below. On the left side of the >Fathom home page, click on Health & Medicine. If you click on either the >Physiology and Human Biology or Mental Health link, it will bring up the " Quick >Calm " lesson. Hope you get some time to check out the other online lessons. > > AARP: Fathom Archives > http://www.aarp.org/tools/partner?url=http://www.fathom.com > >I took a break on posting just after my mom had a heart attack in mid-May. I >have managed to finally catch up with all the posts. Lots of newcomers in >the last six weeks. It is great to see Russ continuing his participation. This >group has also been blessed by another generous & knowledgeable soul, Geri. >Thought I'd start at the beginning, some for the newcomers, and some as I need >the release. > >My mom, Marjory (79) was diagnosed with the general term 'dementia' during >the fall of last year. She has lived in my home since 1994, with a two year >break from '98 to 2000 when she went to live with my brother after we had our >first major mother-daughter argument. It was during this time when she was >drinking quite regularly that she had the first symptoms of visual hallucinations. >I found this out from her boyfriend who she stayed with every weekend from >Fri till Mon since 1994 up until January of 2002. She also drank during on the >weekends with her BF. When she was at home with me, she never had anything >around. During the fall of 2001, she was coming home from her weekends with BF >and began telling me bizarre stories of machines attached to people's heads, >nurses climbing in bed with them at night, among various other hallucinations. >As she was suffering these toward the end of the weekend drinking bouts, the >research I found lead me to believe she was having alcoholic delirious >tremens. This continued for several months until her BF asked that she take care of >her problem before spending anymore time at his house. At the time of onset >of these symptoms, he had just had his son with MS move into his home, coming >from Wyoming, giving up his independence. It also was the same time Mom lost >the last of her 4 cats (within one year), all living to be 18-19 years old. >January 2002 I took Mom to the doctor, had MRI done, found low thyroid and >high cholesterol. With the advice of the Dr. to stop drinking, Mom did so for >about 7 months and then started again a month before I went to Texas to see my >dad in mid-September of last year. By the time I was to leave, she was going >downhill fast and when I returned, she was in a full blown psychosis. For a >month my home was the twilight zone with my mom as central character. By the >end of October, I had her admitted into a Gero-psychiatric ward in a hospital >in Seattle, about 90 miles from our home. She was briefly in another gero-psyc >ward before Seattle, a voluntary one, but she tried to escape the first night >and became violent with her hands and throwing chairs. Hence the transfer to >an involuntary unit. All the tests were run, she was placed on medication, >risperidone and Trazodone, and after two weeks, I was told she should go into >24 hour care. I brought her home. > >Fortunately, I had scheduled surgery for the beginning of October on both my >feet. I knew I would be off work for several months so I had time to decide >what to do with Mom. He motor symptoms became progressively worse with her use >of risperidone. >She needed help dressing, bathing, etc. In December, she had cataract >surgery. I definitely helped the visual hallucinations, but the auditory ones have >been with her constantly since the beginning. This could be due to the fact >she has severe hearing loss, hearing aids for both ears, (she'll only wear one) >and has isolated herself from social events as she cannot follow >conversations well. > >My feet healed slower than anticipated and I didn't return to work until >March of this year. Then I only worked part-time in the afternoons and evenings >when someone would be there for Mom. I had given up a full time management >position to part-time sales at minimum wage. With my SO (significant other) >contributing and the meager contributions of the several young adults living here, >I figured we could make it work. > >I found this group on Feb 22 this year, Mom's 79th BD. It was a gift from >heaven for both her and myself. I need that gift again. My world is crumbling. > It has taken me three days to get this far on this post. Up until about 6 >weeks ago, I was quite a regular on this site. My enthusiasm has not waned >since then; life has just been happening to fast. On a stress test, I'm off the >scale. There is not one situation that has happened, that hasn't been >followed closely by another. I barely adjust and find I have to adjust again. There >is a meaning to all this, it is not real obvious to me right now. The one >thing that is for certain, I've been cutting myself off from the support I have >needed so badly. No longer can I " do it all myself " if there is any self left >at this point. > >In May I had the honor of going to Sacramento, CA to a caregiver's >conference. The highlight was meeting three fellow LBDCaregivers there, Jan, Jim and >. Before I left, my mom was at a very low point, sleeping a lot and barely >eating. It is so hard to know what is LBD and what could be signs of >something worse. While at the conference, my mom was taken to emergency and >discovered she had had a heart attack, in addition to having extremely low blood >pressure, pneumonia, and a firm diagnosis of emphysema. I changed my tickets and >took an earlier flight home. That goodbye hug from Jan has sustained me for a >long time. > >Mom was in the hospital for 8 days. When she came home, so did the oxygen >tanks and all the related trimmings. We had to use a nebulizer with Albuterol >for 4-5 times a day. The best thing that happened in the hospital was Mom >being taken off her previous meds, to be put on Exelon, what I had been badgering >her Dr. to try as it has taken a long time to get appt with neurologist and >with heart attack, had to be delayed again. It is scheduled in another few >weeks. > >Three weeks after being home, Mom took herself off the oxygen. She had been >doing it secretly for several nights. An appointment at the Dr. later that >week showed her oxygen saturation a 96% at rest and 94% after walking up and >down the hall. He said as long as she doesn't have any angina or shortness of >breath, she could stay off. All the equipment is still here, just in case. The >same day she stopped the oxygen, she started smoking. It has been downhill >since. At first, I tried limiting the number of cigarettes she had per day. >This got to be a real drag. >no pun intended. Mom has been a smoker for 65 years and I am now learning >that it is her only true love. When given a full pack, she will smoke one after >another. The loss of oxygen has only served to increase her auditory >hallucinations. I quit giving her a full pack. Now she constantly, and I mean >constantly goes to everyone in the house, and who comes to the house, asking for >cigarettes. Last week she told me she wasn't going to eat what I made her for >meals as I was poisoning her. Then she quit taking her Exelon and Synthroid. >So, I quit giving her cigarettes. She didn't get dressed for two days, and >wouldn't eat. Last night my son brought over some hamburgers and got her to eat >one. Then she took her pills. Then she got a cigarette. This morning she >was up at her usual early time, (she had been sleeping in until 11am and after. > She had breakfast and I coaxed her with a cigarette to get dressed. I hate >this! The very thing that makes her worse, she craves the most. > >So much for life with Mom and on to the imprisonment of Betty. So much has >happened around me that I have no control over, yet the effects have been >profound. I quit my job in May as the paperwork was complete for me to be an >independent provider of care for my mom. I began on June 2nd and have yet to get >my first paycheck. My SO (significant other) left at the end of May, with no >explanation, and eliminated the major financial resource this house has >depended on. My youngest son and his girlfriend moved out also in June. That leaves >me with my oldest son who works sometimes 14 hrs a day in construction and >his friend who works odd hours with the tides at his father's clam & oyster >company. There is virtually no assistance for me now when I need to get away for >any reason. Several weeks ago, I had cousins come to visit from CA. One >drove up with her son and the other I picked up at the airport in Seattle. On the >way home, the transmission went out in my car. It has been over two weeks >and the repair still hasn't been authorized by the warranty company so that I >can get a rental for a few days. Life has been difficult to say the least. > >To top it all off, I have been in a deep depression. I increased my >antidepressant as I was only taking half the 200 mg dosage, up to 150 mg now. I'm not >feeling much better, but not any worse either. I'm just waiting for the next >bomb to drop. I have to start finding ways to cut the budget severely and >part of that is giving up my health insurance. I was only paying $75 a month >for full medical, dental, & vision. The copay was nil as I was in a preferred >network. Now, after giving up full-time, I can pick up Cobra coverage at $220 >a month. The is no question I can afford it when I don't know if I can even >maintain my mortgage payment. The loss of my SO was something that had been >occurring for years. It was my ex-husband of 23 years that had been living >here. To be honest, it was the final chapter of a story we've been trying to end >for several years. Although the stress of that relationship has finally >begun the healing process, but all the other consequences of that finality have >taken their toll. Wow, talk about rambling.....guess it all needed to come out >cuz, guess what? I already feel better after writing this. Hope it didn't >bore you to much. > >I could go on....but will save for other posts. This one is behind me and I >feel maybe it will be less of a battle from here on...with the help of this >group. I know I can't do it alone. Don't know why I tried. So I'm back, >perhaps a bit more humble, but like they say, it takes what it takes. > >Love & Prayers to All >Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Jan, Did I thank you for your never-ending support? If not, here's a big hug right back at ya.... (((((((((((((((((((((JAN)))))))))))))))))))) Slowly coming out of my dark space into some sunny skies. Things haven't changed much, but as they say, 90% is attitude. So, most of the time, I make an attempt to " act as if.'' It is working too. I have been sleeping better, getting up earlier, and have a bit more energy to push me through the daily challenges. I am also keeping a positive attitude about LaCrosse. At this stage in my finances, it looks like I will be driving. Even though I can't tell my left from my right, I know if I get on I-90 in Seattle, it will take my all the way to LaCrosse. I had it mapped out four years ago. With no left or right to take, I just might make it. I will be in touch more often. Look forward to another hug. The last ones from the CCC have thus far sustained me but I really could use another hug fix. Love & Prayers & Hugs, Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Courage, Thank you for your kind words of support. Sounds like you've got your hands full also with that neighbor. I had a Nasty in my life about ten years ago and had to do the restraining order against her. It took all I had to not laugh outloud when she said in court with such a sweet, innocent voice, " I just wish they'd leave me alone. " This one was so good at putting on the victim role around anyone who didn't know her. The tape I played for the judge told different. This was one tough cookie to get rid of, in my mind, I mean. My brain used to go into what I call " monkey mind " where the same scenario plays itself again and again. What power I was giving to that woman. It took time to learn that I could give it to her or take it away from her, all in my own mind. Today, I hope you take back all power you have given her to make your life a living hell. Keep up with the legalities, but when she pops into your brain, make a mental garbage can and toss her in head first!! Thanks again for your support and encouragement. You hang in there too. Can't imagine raising hell without you and I'm really looking forward to it. By the way, what are Canadian jails like? :-) :-) Love & Prayers, Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Hahahahahahahahha...thanks Betty for the laugh (I hear that Canadian jails are too easy but thankfully don't have first hand experience...though you never know what Nasty will lead me to!!!!). You are right that I am giving my power to this woman. Because she only lives one house away I hear her voice and I just want to throw up!!!!!!!! I will be getting a break from her today as I will be going to care for mom - took a day off because my tummy was on the blink. Feeling much better now. I'm tryng to keep everything on an even keel but I have to admit that it's been very hard lately. Just seems like the last 3 months have been filled with trouble and just when I get one thing sorted here comes another...again, thank God I'm not a drinker! Courage Re: Long time, no post... >Courage, > >Thank you for your kind words of support. Sounds like you've got your hands >full also with that neighbor. I had a Nasty in my life about ten years ago >and had to do the restraining order against her. It took all I had to not laugh >outloud when she said in court with such a sweet, innocent voice, " I just >wish they'd leave me alone. " This one was so good at putting on the victim role >around anyone who didn't know her. The tape I played for the judge told >different. This was one tough cookie to get rid of, in my mind, I mean. My brain >used to go into what I call " monkey mind " where the same scenario plays itself >again and again. What power I was giving to that woman. >It took time to learn that I could give it to her or take it away from her, >all in my own mind. Today, I hope you take back all power you have given her >to make your life a living hell. Keep up with the legalities, but when she >pops into your brain, make a mental garbage can and toss her in head first!! > >Thanks again for your support and encouragement. You hang in there too. >Can't imagine raising hell without you and I'm really looking forward to it. By >the way, what are Canadian jails like? :-) :-) > >Love & Prayers, >Betty > > > Quote Link to comment Share on other sites More sharing options...
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