Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Hi Kate, My Dad use to call me Kate. Awesome job! I'm amazed at your juggling skills. Your Mom seems close to the stage of the disease my Mom is in. I'm waiting for my Mom to lose steam. She has always had more energy than I. She is usually sitting up waiting for me at 6am no matter what time I keep her up to. I have been through the transistion to home already. The system does appear to want you to do the nursing home route. I wound up in the fetal position under the covers after making my first calls for home help. Care varies from: I'll sit and keep her company to I'll bathe and help use the toilet. Mom needed bathroom assistance or it wasn't going to work. She started on a commode. Ugh After much research, Dept of Aging helps with the finances for home care.. There are others like Catholic Charities too. My Mom goes to daycare M-F from 7:30am - 5:30pm. If you have one near you, I think the concept is awesome. She calls it work and/or going to the Center. They held a senior prom for them to dress up and dance. I posted earlier on my plan for incontinence. Kudos to you for making the effort. In the long run, I think it is best to keep them close as long as you can. It's not the destination. It's the journey. Best of luck on your journey. Kat Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, diagnosed w/ LBD 3/08 My MOL Joyce is home Hi everyone, Just wanted to let you all know that my MOL Joyce is home with us, now, and in the middle of her third week here (after about four months in a nh). Things are c r a z y -- between our work schedules, the baby (a very happy and bouncy 9 mo old despite all his allergies to milk, wheat and eggs!), homeschooling schedules (especially with my high schooler who is taking some college classes and has to be ferried back and forth), and supervising all her care 24/7. The hardest thing in this transition has been working through the medical system; even things the nursing home therapy staff recommended are beginning to 'fall through' now that we have her at home -- doctors who won't order the care for her, services that suddenly aren't available (though they were availalbe when she was in the nursing home!)....still, all that is to be expected; we're becoming very accustomed to jumping through hoops! It makes no sense to us that the 'system' almost forces people to go the nh route; we have found, over and over again, that you hardly ever seem to get the same answer twice, or the same care, when you want to look after someone at home. The worst thing was that we found out the doctor who was supposedly supervising her care in the nh in reality didn't have a clue who she was, what meds she was taking, or apparently what LBD is in the first place. Six days after discharging her, and writing scripts for all her meds, he demanded to see her again, questioned her LBD diagnosis, changed her meds (which of course we had just filled and which had been an established part of her care for years and viewed and okayed by countless prior doctros!), and declared she had no need of in home therapy. Wow. We were blown away. Now it is back to the grindstone trying to find a decent doctor in this town who will actually understand her situation and work with us (what a concept!) to get her the quality of care she needs. The good news is that Joyce is much happier here at home than she was in the nh, and though she cycles and has her completely off the wall moments filled with delusions and hallucinations, most of the time we have managed to maintain calm, and are trying our best to structure things predictably for her. We just go with the flow, try to keep her stable and from becoming fearful and upset, and do our best to take as good care of her as we can.. Of course, finances are a huge issue, especially since my husband has had to return home full time in order to help juggle everything, but we will do all we can within those confines. We have some private help coming in to help bathe her and take care of light housekeeping, and occasional 'adult sitters'; we are doing okay, though this breakneck speed is very tiring. Joyce needs help with everything from getting up and walking to eating to bathing, so an adult has to be with her all the time. One thing I have noticed: most days she really just wants to sleep, and even getting up to bathe and change or to come out and eat with us tires her out. Her cognition seems to fluctuating sharply, too. The days her mind is clearer, she is able to get around pretty well and follow directions; when she is more confused, her motor skills decline with that -- and when she is delusional and hallucinating, her motor skills acually do the best of all...that is when she is most inclined to be up all night, or wander. I do see that her level of confusion is pretty consistently worse, now, than it was before she went into the nh after her series of falls. At any rate, she's here, and we're doing our best to keep up with her and everything else. I appreciate any insight or helpful hints you all might have as to her care and our sanity! Thanks -- Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Kate, I am overwhelmed with the amount of responsibility you are handling! You must be younger than many of us are when thrown into the caregiving for a parent role! Thankfully you seem to understand your limits and have outside help coming in. Do pace yourself as it sounds like you are committed for the duration. Joyce is lucky her son picked you! > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Dear , Thank you for your encouragement Both my husband and I were born when our parents were in their forties (though he's an only and I'm the youngest of six), so we do find ourselves spreading our care- wings across the generations. In a way, when I am not in the midst of all the running and the putting out of various fires, I feel it is a blessing to be able to bridge time in such a way. But it is sometimes so hard -- as you all know very well! We are committed to making this work as well as we can, although we as we begin to see how it will be from day to day and week to week, we know we have a big job -- even bigger than it was before she went into the nh. We're just hoping and praying we can juggle it all. Thanks again for your kind words that are so encouraging - Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work schedules, > > the baby (a very happy and bouncy 9 mo old despite all his allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor who > > was supposedly supervising her care in the nh in reality didn't have > > a clue who she was, what meds she was taking, or apparently what LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared she > > had no need of in home therapy. Wow. We were blown away. Now it is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she was > > in the nh, and though she cycles and has her completely off the wall > > moments filled with delusions and hallucinations, most of the time we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. One > > thing I have noticed: most days she really just wants to sleep, and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hi Kat Thanks for your note -- we are exploring the day care option you mentioned. I appreciated the advice! My husband and I have debated whether it would improve her quality of life -- right now she almost seems semi-catatonic, and spent the last few days awake, 'live- dreaming,' wandering confused, suffering from all kinds of amnesia, or, like yesterday afternoon and last night, sleeping all the time. But, I do think it would help us out as long as it doesn't worsen things for her. Right now, if we don't have a sitter coming in (and that's not that frequent, because of finances), we have to be here to the minute; it gets frustrating when the piano lesson runs over, or the sitter is twenty minutes late and gives me only five minutes to get me and all the kids where we need to be.... But we do want to keep her close. I know without a shadow of a doubt that despite all her confusion, amnesia, and delusions, somewhere in there she knows and it matters. The day may come again -- and I'm sure it probably will -- when she has to go back into full time care once more...but her being here right now is the right thing for us to do. Right now I really think Joyce is in the mid to late part of stage 6 and some days she really seems stage 7. She cycles (always has, except now the time frame for her cycling has shortened dramatically) betweeen the two. On her worst days she is either just sleeping all the time, or is awake but living in her own world (and suffers from insomnia). Though at first she ate very well when she came home from the nh, over the last few days she has not been interested in eating at all, and will only pick a little at her food. She often acts as though she doesn't remember how to eat. She also has taken to getting up on her own and wandering -- an amazing feat considering that most of the time she needs a lot of assistance just standing and walking to the commode(when she is awake and living out her dreams, she actually does well with getting around) -- and even fell the other morning and cut her arm a little bit. I guess we'll have to get a bed alarm. We have an intercom system in place, but she forgets how to use it or forgets to use it at all. The last few days, either my husband, myself, or one of the older children has literally been sitting at her bedside 24 hours a day. Thanks so much, again, for your advice - Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > Hi Kate, > My Dad use to call me Kate. Awesome job! I'm amazed at your juggling skills. Your Mom seems close to the stage of the disease my Mom is in. I'm waiting for my Mom to lose steam. She has always had more energy than I. She is usually sitting up waiting for me at 6am no matter what time I keep her up to. I have been through the transistion to home already. The system does appear to want you to do the nursing home route. I wound up in the fetal position under the covers after making my first calls for home help. Care varies from: I'll sit and keep her company to I'll bathe and help use the toilet. Mom needed bathroom assistance or it wasn't going to work. She started on a commode. Ugh > After much research, Dept of Aging helps with the finances for home care.. There are others like Catholic Charities too. My Mom goes to daycare M-F from 7:30am - 5:30pm. If you have one near you, I think the concept is awesome. She calls it work and/or going to the Center. They held a senior prom for them to dress up and dance. > I posted earlier on my plan for incontinence. > Kudos to you for making the effort. In the long run, I think it is best to keep them close as long as you can. > It's not the destination. It's the journey. > Best of luck on your journey. > Kat > Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, diagnosed w/ LBD 3/08 > > My MOL Joyce is home > > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can.. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Thanks, Donna You are all amazing, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Kate, > > > > I tip my hat to you and your husband for all that you. > > Best to you and your family. > > Courage > > > > My MOL Joyce is home > > > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with > us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially > with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her > at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she > was in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; > we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and > writing > > scripts for all her meds, he demanded to see her again, > questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for > years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this > town > > who will actually understand her situation and work with us (what > a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the > time we > > have managed to maintain calm, and are trying our best to > structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best > to > > take as good care of her as we can. Of course, finances are a > huge > > issue, especially since my husband has had to return home full > time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with > us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well > and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and > hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was > before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints > you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Kate, My Mom was fairly social as long as all the attention was on her. So your situation is different. What I do know is that the Day Care will usually work with you as best they can. If she wants to be off in a corner and watch TV or what ever, they will work with you. We had one guy that didn't want to have anything to do with anyone in Mom's group. The SWs just kept working with letting him do his own thing, in the group, and he kept his nose stuck in a magazine. You would be amazed when they start to participate. They get curious and the exercises were such they are successful and start to enjoy feeling better about themselves. They use to let Mom " help " bake cookies. It kept up her lifelong illusion she was very important. And the games they play, are not with rules like we use. They don't have any rules and if they need to toss the dice 5 times to get a good answer they let them. And someone else adds up their yatzee score and " helps " them. Mostly you would need to work with whoever the day care SWs are. They do things at all levels, in the group Mom was in. And when Mom got into grumbling about having to go, I told her she needed others as much as I did. (The Social Workers always laughed and said she never grumbled until she saw me.) These were the people who got her to shower while she was there. Amazing.!!!!!!!! I laughed when they asked me if I wanted her part of the shower program. I told them, if they could get her in the shower more power to them. She got a shower each time she was at day care after that. It cost me nothing. I did go ask how they did it.!!!!!! They said they had a real good shower person.!!!! I should say!!!!!!! So, partly you need to have the time and she really will be better for them than she is with you. I can't believe she wants others to know " how she is. " Does she behave for the MD and others? That is more what she will do at day care. AND YOU WILL GET A BREAK. From what I remember, I just has to have some of my own time and know she was ok. I didn't really care if she had fun. I wasn't having to much fun.....But she did end up having fun. Because it was the one place she could have some " success. " Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: My MOL Joyce is home Hi Donna, I appreciate your advice! We do have adult day care available here and we are looking in to it. I think it would give us some much needed respite. My main question, I guess, is that Joyce has never been a very social person; in fact, she has been extremely reclusive, and that trend just worsened as the years passed. She is not a 'joiner,' doesn't like most activities that others do (except shopping - she loves shopping, but now is neither able to get out and do it, can't read the catalogs or work the phone to do it long distance, and has effectively spent through all her ability to buy the things she wants -- which are very expensive, generally), and is very challenged by social situations. Even in the nh she refused to participate in the social activities that they made available (she wouldn't ever go eat in the dining room, for example, or join in any of the games or events they had available. I do think she played Bingo once in four months, and was pretty excited because she won some money...but she only did it that one time, in spite of it being a good experience overall). My husband and I just really don't know if adult day care, where she'd be surrounded by people, would help her or make her even more anxious and upset. Honestly, I am not trying to speak ill of her, but even basic family get-togethers have always been extremely hard for her (simple things like birthdays, for example). My gut feeling is that she would have a lot of negative behaviors as a result of being made to get up, get out and interact with others (assuming she even could -- when she is at her worst she is not aware of where she is or who any one else is; she's just in her own world). Even the getting up and getting dressed is stressful for her -- she spent years and years of her life just wearing a housecoat (yes, years: probably at least 40). She had a lot of nice clothes, but rarely wore them. One of the things she hated most about the nh was that they made her get up in the morning and get dressed. It bothered her to no end - she said they told her what to wear, that her clothes were uncomfortable, that the clothes didn't match right.... So, we just don't know if day care would work. Any one out there have any similar experiences or insight into this kind of situation? Thank you again, Donna -- we will be checking into it and may try it out; for us, it would be nice not to have to worry about time to the minute so much Blessings, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hi Kate, I feel your exhaustion. A few more insights after reading your response: The other night Mom looked up at me and said, " I owe you a big hug. I don't know how you put up w/ me. " It was the first time in a long time I had " seen " my Mom. It reinforced my belief that I am doing the right thing and deep down she knows it. The only info on stages I have seen is from the Caring Spouses. Where are you getting your stages from? I think my Mom is phase III according to Caring Spouses. One of the main reasons I tried day care was the lack of consistency on home care.. If the caregiver was late, I was late. My boss would tell me I needed to work it out. Too much stress depending on other people. Mom didn't like it at all at first. Now she deals. I try not to let her know if I am not working and take her to day care cuz she gets upset thinking she can be home alone. She still doesn't get just how confused she is. She tells people she doesn't belong there and some people are " not all there " not realizing she is one of them. It gives her something to talk about when she gets home and wears her out which I think helps w/ sleeping. She gets physical therapy 3 days a week paid for my Medicare. My Mom has semi-catatonic episodes in varying degrees and lengths. She can just sit in her room somedays in total silence. Living in her delusion. She usually sleeps through the night but within the past month has started acting out her delusions during the night. I have started restraining her every night. We both sleep better. I suggest a restraint for the night time and possibly while she is sitting in her chair for the active confused times. Mom complains that it is embarrassing when her boyfriends (hallucinations) come over to see her and she is restrained. But I tell her it is for her safety when she gets confused and tries to get up unassisted in her sleep. She is usually snoring within the hour. http://www.carepathways.com/estore-cat-Daily.cfm?Brief=Safety%20Restraint%20Devi\ ces I use the belt that goes around the waist. She can still sit up in bed and hang her legs over. I also have a bed rail as the first night I had to put dining room chairs along her bed so she wouldn't roll out. Mom use to have a Lifeline but she never pressed it for herself. She always thought she'd manage eventually to get off the floor. When she finally did use it, she called the police to rescue our dog that was being dognapped. And yes, the police came. My boyfriend, who was outside shoveling snow, explained the situation, and Mom has not had access to a Lifeline or phone since. Until yesterday when my boyfriend was trying to work through a delusion by letting her play with a dead phone or so he thought. She managed to dial 911. He explained the situation over the phone this time. I think we are on the list :-p Occasionally, usually when she has to make an important call (hallucination), Mom will remind me that I am not following the rules and she should have access to a phone in case of an emergency. My Mom also does the eating thing. She will sometimes eat with her hand out of frustration from trying to work the utensil. Sometimes we have to talk her through the whole meal and keep reminding her to eat, as she gets distracted by hallucinations (wires connecting her to the chair, hair in her food, dates she has to get ready for, boyfriends calling to her from the front yard), and promising dessert upon completion. I try to slip nutrients in where I can. Soy milk and tofu added to smoothies for protein. She chooses veges over meat lately and her protein intake is low. Sometimes I will let her eat just ice cream, if that's what she wants. I am starting to make my own organic ice cream. Does MOL mean Mother-in-law? Kat Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, diagnosed w/ LBD 3/08. My MOL Joyce is home > > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can.. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 I second that. Kat-IL Re: My MOL Joyce is home Hi Donna, I appreciate your advice! We do have adult day care available here and we are looking in to it. I think it would give us some much needed respite. My main question, I guess, is that Joyce has never been a very social person; in fact, she has been extremely reclusive, and that trend just worsened as the years passed. She is not a 'joiner,' doesn't like most activities that others do (except shopping - she loves shopping, but now is neither able to get out and do it, can't read the catalogs or work the phone to do it long distance, and has effectively spent through all her ability to buy the things she wants -- which are very expensive, generally), and is very challenged by social situations. Even in the nh she refused to participate in the social activities that they made available (she wouldn't ever go eat in the dining room, for example, or join in any of the games or events they had available. I do think she played Bingo once in four months, and was pretty excited because she won some money...but she only did it that one time, in spite of it being a good experience overall). My husband and I just really don't know if adult day care, where she'd be surrounded by people, would help her or make her even more anxious and upset. Honestly, I am not trying to speak ill of her, but even basic family get-togethers have always been extremely hard for her (simple things like birthdays, for example). My gut feeling is that she would have a lot of negative behaviors as a result of being made to get up, get out and interact with others (assuming she even could -- when she is at her worst she is not aware of where she is or who any one else is; she's just in her own world). Even the getting up and getting dressed is stressful for her -- she spent years and years of her life just wearing a housecoat (yes, years: probably at least 40). She had a lot of nice clothes, but rarely wore them. One of the things she hated most about the nh was that they made her get up in the morning and get dressed. It bothered her to no end - she said they told her what to wear, that her clothes were uncomfortable, that the clothes didn't match right.... So, we just don't know if day care would work. Any one out there have any similar experiences or insight into this kind of situation? Thank you again, Donna -- we will be checking into it and may try it out; for us, it would be nice not to have to worry about time to the minute so much Blessings, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 OOps, Kat-IL Guess I thought you were in UT for some reason.. That helps. Thanks. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Re: My MOL Joyce is home I second that. Kat-IL Re: My MOL Joyce is home Hi Donna, I appreciate your advice! We do have adult day care available here and we are looking in to it. I think it would give us some much needed respite. My main question, I guess, is that Joyce has never been a very social person; in fact, she has been extremely reclusive, and that trend just worsened as the years passed. She is not a 'joiner,' doesn't like most activities that others do (except shopping - she loves shopping, but now is neither able to get out and do it, can't read the catalogs or work the phone to do it long distance, and has effectively spent through all her ability to buy the things she wants -- which are very expensive, generally), and is very challenged by social situations. Even in the nh she refused to participate in the social activities that they made available (she wouldn't ever go eat in the dining room, for example, or join in any of the games or events they had available. I do think she played Bingo once in four months, and was pretty excited because she won some money...but she only did it that one time, in spite of it being a good experience overall). My husband and I just really don't know if adult day care, where she'd be surrounded by people, would help her or make her even more anxious and upset. Honestly, I am not trying to speak ill of her, but even basic family get-togethers have always been extremely hard for her (simple things like birthdays, for example). My gut feeling is that she would have a lot of negative behaviors as a result of being made to get up, get out and interact with others (assuming she even could -- when she is at her worst she is not aware of where she is or who any one else is; she's just in her own world). Even the getting up and getting dressed is stressful for her -- she spent years and years of her life just wearing a housecoat (yes, years: probably at least 40). She had a lot of nice clothes, but rarely wore them. One of the things she hated most about the nh was that they made her get up in the morning and get dressed. It bothered her to no end - she said they told her what to wear, that her clothes were uncomfortable, that the clothes didn't match right.... So, we just don't know if day care would work. Any one out there have any similar experiences or insight into this kind of situation? Thank you again, Donna -- we will be checking into it and may try it out; for us, it would be nice not to have to worry about time to the minute so much Blessings, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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