Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Tania: One thing you can be sure of with LBD is that things are going to change. If something is a problem now, it will be something different down the road. That said, maybe this will help your Mom with the bathroom stuff at night. I slept with my husband up until the last night of his life when I moved to another room because he had spilled water on his side of the bed and needed to sleep on mine. I believe that was as it should be. He passed quietly in the night and he had been ready to go--very verbal about it--for at least a year. I slept with him mainly because 1) he really did not want to sleep alone; and 2) I was afraid he would stumble around at night and hurt himself. About 3 years before he died, I got tired of waking up when he walked to the bathroom at night because I was worried he would fall. I put a urinal by his bed (the kind they use in hospitals) and told him to pee in that if he needed to. He did that for about a year and a half and that saved the nighttime bathroom trips. We even took it on trips with us and it was so much easier for him. At some point that got confusing for him, so I got a potty chair and put it right by his side of the bed. I lined it with a 4-gallon trash bag and put kitty litter in the bottom and put plastic and absorbent towels underneath. He used it for urination during the night for the remainder of his life. When he felt the urge, all he had to do was stand up to use the chair. No walking involved. When necessary, I just tied the baggy and threw it away and put a new one in. I also regularly washed the towels underneath the chair. Most of time, I could sleep fairly well knowing he wasn't going to be walking around at night, but each situation is different. Hope this helps your mom. If not now, maybe later. Cassie To: LBDcaregivers From: taniamartin@... Date: Wed, 28 Mar 2012 09:56:12 +0000 Subject: Re: Things are getting more and more difficult Hi Kate. Dad, like most with PDD/LBD, has his good and bad days. Every day is different and completely unpredictable. This morning he lost his temper with Mum because she left him to rest in bed after she got out because it was a dreary day outside. I spoke to him to calm him down. He was convinced that Mum had left him in bed because she didn't want to feed him but I explained that Mum likes to help take care of him and that she has his best interests at heart. He eventually calmed down and agreed to eat his breakfast. The good news is that we took him for a VQ scan (scan of the lungs) yesterday and he doesn't have a clot on his lung. He may still have a clot somewhere else, so it's not over yet, though a lung clot would have been very difficult to deal with. I'm still confused as to what is yet to come. Because Dad has PDD, his body is going before his mind so hallucinations and the like have been very mild and very rare - only one or two so far. Most of the time he 'is' with it cognitively (he can tell me what the team lineup for the football team is that week or tell a story from years ago) but other times he stutters and can't quite get out what he wants to say. In hospital last week they asked him what year it was and he said it was 1980-something. As far as being ready to let Dad go, I'm definitely not ready for that. I'm hoping I'll be ready when the time comes but I believe it's a bit of a way off yet. His bodily functions are worsening a little all the time (he's wetting himself occasionally now and walking even a little tires him out tremendously). He's said more than once to my mother that he " doesn't want to die " so I don't think he is near being ready either. If the time comes when he says (or we can see) that he doesn't want to go on, we will have to let him go. I've even thought about what I would say at that time. The modifications on my parents' bathroom and the building of a ramp outside their house was recently finished. It is now safer for him to bathe and get in and out of the house. At present, apart from myself, Mum doesn't have any additional in-home help. We have had assessments done and will no doubt have to get someone in very soon. I feel for Mum because she insists on sleeping next to Dad every night to help him out of bed for the bathroom and in case he has a problem during the night but in the process, she hasn't had a good night's sleep in months and months. Dad gets up to the bathroom between 2 and 6 times a night. I've offered to take sole care of Dad for a while to give her a break but she won't hear of it. Aaaaah, so many complications! I'm sorry to write such a lengthy piece again but hopefully something here may help someone else. And thanks to everyone for your ever-useful advice. I couldn't bear to live without it/you! Tania. > > > ** > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > the worse of late. > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > he said he had. This is just the latest of many bad falls he's had in the > > past couple of years. But this time it's worse. > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > doctor) was extremely concerned about Dad's breathlessness and was worried > > he may have a clot somewhere. Long story short, after 8.5 hours in > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > (thank God) no broken bones but does have a damaged piriformis muscle in > > the behind which explains his extreme pain and that he would need further > > tests to determine if he has a blood clot (which can be fatal) although the > > blood tests were indicating that there was. Now we have to wait until > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > dangerous situation whether we were to treat a clot or ignore it. To treat > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > already on blood thinners for his heart but this is way more powerful. > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > on this medication, he could bleed to death. But if he does have a clot and > > it's left untreated, it may be OK, but could also be fatal. > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > that the only thing you can be sure of with this disease is that you can't > > be sure of anything. > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > guess I just wanted to put these horrible feelings into words as Dad seems > > to be worsening and it's heartbreaking. > > > > Tania.... > > > > > > > > > > -- > Kate Knapp, OIT > University of Minnesota > > > You were born with certain gifts and talents. > In kindergarten you were taught to share. > The world needs all of the gifts it can get. > Don't be shy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Tania: One thing you can be sure of with LBD is that things are going to change. If something is a problem now, it will be something different down the road. That said, maybe this will help your Mom with the bathroom stuff at night. I slept with my husband up until the last night of his life when I moved to another room because he had spilled water on his side of the bed and needed to sleep on mine. I believe that was as it should be. He passed quietly in the night and he had been ready to go--very verbal about it--for at least a year. I slept with him mainly because 1) he really did not want to sleep alone; and 2) I was afraid he would stumble around at night and hurt himself. About 3 years before he died, I got tired of waking up when he walked to the bathroom at night because I was worried he would fall. I put a urinal by his bed (the kind they use in hospitals) and told him to pee in that if he needed to. He did that for about a year and a half and that saved the nighttime bathroom trips. We even took it on trips with us and it was so much easier for him. At some point that got confusing for him, so I got a potty chair and put it right by his side of the bed. I lined it with a 4-gallon trash bag and put kitty litter in the bottom and put plastic and absorbent towels underneath. He used it for urination during the night for the remainder of his life. When he felt the urge, all he had to do was stand up to use the chair. No walking involved. When necessary, I just tied the baggy and threw it away and put a new one in. I also regularly washed the towels underneath the chair. Most of time, I could sleep fairly well knowing he wasn't going to be walking around at night, but each situation is different. Hope this helps your mom. If not now, maybe later. Cassie To: LBDcaregivers From: taniamartin@... Date: Wed, 28 Mar 2012 09:56:12 +0000 Subject: Re: Things are getting more and more difficult Hi Kate. Dad, like most with PDD/LBD, has his good and bad days. Every day is different and completely unpredictable. This morning he lost his temper with Mum because she left him to rest in bed after she got out because it was a dreary day outside. I spoke to him to calm him down. He was convinced that Mum had left him in bed because she didn't want to feed him but I explained that Mum likes to help take care of him and that she has his best interests at heart. He eventually calmed down and agreed to eat his breakfast. The good news is that we took him for a VQ scan (scan of the lungs) yesterday and he doesn't have a clot on his lung. He may still have a clot somewhere else, so it's not over yet, though a lung clot would have been very difficult to deal with. I'm still confused as to what is yet to come. Because Dad has PDD, his body is going before his mind so hallucinations and the like have been very mild and very rare - only one or two so far. Most of the time he 'is' with it cognitively (he can tell me what the team lineup for the football team is that week or tell a story from years ago) but other times he stutters and can't quite get out what he wants to say. In hospital last week they asked him what year it was and he said it was 1980-something. As far as being ready to let Dad go, I'm definitely not ready for that. I'm hoping I'll be ready when the time comes but I believe it's a bit of a way off yet. His bodily functions are worsening a little all the time (he's wetting himself occasionally now and walking even a little tires him out tremendously). He's said more than once to my mother that he " doesn't want to die " so I don't think he is near being ready either. If the time comes when he says (or we can see) that he doesn't want to go on, we will have to let him go. I've even thought about what I would say at that time. The modifications on my parents' bathroom and the building of a ramp outside their house was recently finished. It is now safer for him to bathe and get in and out of the house. At present, apart from myself, Mum doesn't have any additional in-home help. We have had assessments done and will no doubt have to get someone in very soon. I feel for Mum because she insists on sleeping next to Dad every night to help him out of bed for the bathroom and in case he has a problem during the night but in the process, she hasn't had a good night's sleep in months and months. Dad gets up to the bathroom between 2 and 6 times a night. I've offered to take sole care of Dad for a while to give her a break but she won't hear of it. Aaaaah, so many complications! I'm sorry to write such a lengthy piece again but hopefully something here may help someone else. And thanks to everyone for your ever-useful advice. I couldn't bear to live without it/you! Tania. > > > ** > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > the worse of late. > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > he said he had. This is just the latest of many bad falls he's had in the > > past couple of years. But this time it's worse. > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > doctor) was extremely concerned about Dad's breathlessness and was worried > > he may have a clot somewhere. Long story short, after 8.5 hours in > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > (thank God) no broken bones but does have a damaged piriformis muscle in > > the behind which explains his extreme pain and that he would need further > > tests to determine if he has a blood clot (which can be fatal) although the > > blood tests were indicating that there was. Now we have to wait until > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > dangerous situation whether we were to treat a clot or ignore it. To treat > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > already on blood thinners for his heart but this is way more powerful. > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > on this medication, he could bleed to death. But if he does have a clot and > > it's left untreated, it may be OK, but could also be fatal. > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > that the only thing you can be sure of with this disease is that you can't > > be sure of anything. > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > guess I just wanted to put these horrible feelings into words as Dad seems > > to be worsening and it's heartbreaking. > > > > Tania.... > > > > > > > > > > -- > Kate Knapp, OIT > University of Minnesota > > > You were born with certain gifts and talents. > In kindergarten you were taught to share. > The world needs all of the gifts it can get. > Don't be shy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Smart, Cassie! I wish I'd thought of something like that when Mom was living with me. But then she'd probably refuse to use it - a bit stubborn. She never really believed that she couldn't walk into the bathroom - and fell most of the time! Kitty litter - not just for cats anymore. Cool. Kate > Tania: > > One thing you can be sure of with LBD is that things are going to change. > If something is a problem now, it will be something different down the > road. That said, maybe this will help your Mom with the bathroom stuff at > night. > > I slept with my husband up until the last night of his life when I moved > to another room because he had spilled water on his side of the bed and > needed to sleep on mine. I believe that was as it should be. He passed > quietly in the night and he had been ready to go--very verbal about it--for > at least a year. > > I slept with him mainly because 1) he really did not want to sleep alone; > and 2) I was afraid he would stumble around at night and hurt himself. > About 3 years before he died, I got tired of waking up when he walked to > the bathroom at night because I was worried he would fall. I put a urinal > by his bed (the kind they use in hospitals) and told him to pee in that if > he needed to. He did that for about a year and a half and that saved the > nighttime bathroom trips. We even took it on trips with us and it was so > much easier for him. At some point that got confusing for him, so I got a > potty chair and put it right by his side of the bed. I lined it with a > 4-gallon trash bag and put kitty litter in the bottom and put plastic and > absorbent towels underneath. He used it for urination during the night for > the remainder of his life. When he felt the urge, all he had to do was > stand up to use the chair. No walking involved. When necessary, I just > tied the baggy and threw it away and put a new one in. I also regularly > washed the towels underneath the chair. Most of time, I could sleep fairly > well knowing he wasn't going to be walking around at night, but each > situation is different. Hope this helps your mom. If not now, maybe later. > > Cassie > > To: LBDcaregivers > From: taniamartin@... > Date: Wed, 28 Mar 2012 09:56:12 +0000 > Subject: Re: Things are getting more and more difficult > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Kate. > > > > Dad, like most with PDD/LBD, has his good and bad days. Every day is > different and completely unpredictable. This morning he lost his temper > with Mum because she left him to rest in bed after she got out because it > was a dreary day outside. I spoke to him to calm him down. He was convinced > that Mum had left him in bed because she didn't want to feed him but I > explained that Mum likes to help take care of him and that she has his best > interests at heart. He eventually calmed down and agreed to eat his > breakfast. > > > > The good news is that we took him for a VQ scan (scan of the lungs) > yesterday and he doesn't have a clot on his lung. He may still have a clot > somewhere else, so it's not over yet, though a lung clot would have been > very difficult to deal with. > > > > I'm still confused as to what is yet to come. Because Dad has PDD, his > body is going before his mind so hallucinations and the like have been very > mild and very rare - only one or two so far. Most of the time he 'is' with > it cognitively (he can tell me what the team lineup for the football team > is that week or tell a story from years ago) but other times he stutters > and can't quite get out what he wants to say. In hospital last week they > asked him what year it was and he said it was 1980-something. > > > > As far as being ready to let Dad go, I'm definitely not ready for that. > I'm hoping I'll be ready when the time comes but I believe it's a bit of a > way off yet. His bodily functions are worsening a little all the time (he's > wetting himself occasionally now and walking even a little tires him out > tremendously). He's said more than once to my mother that he " doesn't want > to die " so I don't think he is near being ready either. If the time comes > when he says (or we can see) that he doesn't want to go on, we will have to > let him go. I've even thought about what I would say at that time. > > > > The modifications on my parents' bathroom and the building of a ramp > outside their house was recently finished. It is now safer for him to bathe > and get in and out of the house. At present, apart from myself, Mum doesn't > have any additional in-home help. We have had assessments done and will no > doubt have to get someone in very soon. > > > > I feel for Mum because she insists on sleeping next to Dad every night to > help him out of bed for the bathroom and in case he has a problem during > the night but in the process, she hasn't had a good night's sleep in months > and months. Dad gets up to the bathroom between 2 and 6 times a night. > I've offered to take sole care of Dad for a while to give her a break but > she won't hear of it. > > > > Aaaaah, so many complications! I'm sorry to write such a lengthy piece > again but hopefully something here may help someone else. > > > > And thanks to everyone for your ever-useful advice. I couldn't bear to > live without it/you! > > > > Tania. > > > > > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn > for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and > finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, > noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall > and > > > > he said he had. This is just the latest of many bad falls he's had in > the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after > not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He > (the > > > > doctor) was extremely concerned about Dad's breathlessness and was > worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle > in > > > > the behind which explains his extreme pain and that he would need > further > > > > tests to determine if he has a blood clot (which can be fatal) > although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it > is a > > > > dangerous situation whether we were to treat a clot or ignore it. To > treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall > whilst > > > > on this medication, he could bleed to death. But if he does have a > clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying > from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I > realise > > > > that the only thing you can be sure of with this disease is that you > can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. > I > > > > guess I just wanted to put these horrible feelings into words as Dad > seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Smart, Cassie! I wish I'd thought of something like that when Mom was living with me. But then she'd probably refuse to use it - a bit stubborn. She never really believed that she couldn't walk into the bathroom - and fell most of the time! Kitty litter - not just for cats anymore. Cool. Kate > Tania: > > One thing you can be sure of with LBD is that things are going to change. > If something is a problem now, it will be something different down the > road. That said, maybe this will help your Mom with the bathroom stuff at > night. > > I slept with my husband up until the last night of his life when I moved > to another room because he had spilled water on his side of the bed and > needed to sleep on mine. I believe that was as it should be. He passed > quietly in the night and he had been ready to go--very verbal about it--for > at least a year. > > I slept with him mainly because 1) he really did not want to sleep alone; > and 2) I was afraid he would stumble around at night and hurt himself. > About 3 years before he died, I got tired of waking up when he walked to > the bathroom at night because I was worried he would fall. I put a urinal > by his bed (the kind they use in hospitals) and told him to pee in that if > he needed to. He did that for about a year and a half and that saved the > nighttime bathroom trips. We even took it on trips with us and it was so > much easier for him. At some point that got confusing for him, so I got a > potty chair and put it right by his side of the bed. I lined it with a > 4-gallon trash bag and put kitty litter in the bottom and put plastic and > absorbent towels underneath. He used it for urination during the night for > the remainder of his life. When he felt the urge, all he had to do was > stand up to use the chair. No walking involved. When necessary, I just > tied the baggy and threw it away and put a new one in. I also regularly > washed the towels underneath the chair. Most of time, I could sleep fairly > well knowing he wasn't going to be walking around at night, but each > situation is different. Hope this helps your mom. If not now, maybe later. > > Cassie > > To: LBDcaregivers > From: taniamartin@... > Date: Wed, 28 Mar 2012 09:56:12 +0000 > Subject: Re: Things are getting more and more difficult > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Kate. > > > > Dad, like most with PDD/LBD, has his good and bad days. Every day is > different and completely unpredictable. This morning he lost his temper > with Mum because she left him to rest in bed after she got out because it > was a dreary day outside. I spoke to him to calm him down. He was convinced > that Mum had left him in bed because she didn't want to feed him but I > explained that Mum likes to help take care of him and that she has his best > interests at heart. He eventually calmed down and agreed to eat his > breakfast. > > > > The good news is that we took him for a VQ scan (scan of the lungs) > yesterday and he doesn't have a clot on his lung. He may still have a clot > somewhere else, so it's not over yet, though a lung clot would have been > very difficult to deal with. > > > > I'm still confused as to what is yet to come. Because Dad has PDD, his > body is going before his mind so hallucinations and the like have been very > mild and very rare - only one or two so far. Most of the time he 'is' with > it cognitively (he can tell me what the team lineup for the football team > is that week or tell a story from years ago) but other times he stutters > and can't quite get out what he wants to say. In hospital last week they > asked him what year it was and he said it was 1980-something. > > > > As far as being ready to let Dad go, I'm definitely not ready for that. > I'm hoping I'll be ready when the time comes but I believe it's a bit of a > way off yet. His bodily functions are worsening a little all the time (he's > wetting himself occasionally now and walking even a little tires him out > tremendously). He's said more than once to my mother that he " doesn't want > to die " so I don't think he is near being ready either. If the time comes > when he says (or we can see) that he doesn't want to go on, we will have to > let him go. I've even thought about what I would say at that time. > > > > The modifications on my parents' bathroom and the building of a ramp > outside their house was recently finished. It is now safer for him to bathe > and get in and out of the house. At present, apart from myself, Mum doesn't > have any additional in-home help. We have had assessments done and will no > doubt have to get someone in very soon. > > > > I feel for Mum because she insists on sleeping next to Dad every night to > help him out of bed for the bathroom and in case he has a problem during > the night but in the process, she hasn't had a good night's sleep in months > and months. Dad gets up to the bathroom between 2 and 6 times a night. > I've offered to take sole care of Dad for a while to give her a break but > she won't hear of it. > > > > Aaaaah, so many complications! I'm sorry to write such a lengthy piece > again but hopefully something here may help someone else. > > > > And thanks to everyone for your ever-useful advice. I couldn't bear to > live without it/you! > > > > Tania. > > > > > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn > for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and > finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, > noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall > and > > > > he said he had. This is just the latest of many bad falls he's had in > the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after > not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He > (the > > > > doctor) was extremely concerned about Dad's breathlessness and was > worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle > in > > > > the behind which explains his extreme pain and that he would need > further > > > > tests to determine if he has a blood clot (which can be fatal) > although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it > is a > > > > dangerous situation whether we were to treat a clot or ignore it. To > treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall > whilst > > > > on this medication, he could bleed to death. But if he does have a > clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying > from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I > realise > > > > that the only thing you can be sure of with this disease is that you > can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. > I > > > > guess I just wanted to put these horrible feelings into words as Dad > seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 You know, that's a great idea! I'm going to suggest all of this to Mum. Neither Mum nor Dad are that great with trying new things but if it means she and Dad get some better quality sleep, surely they'll be up for it!? Thanks Cassie. Tania... > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > > > he said he had. This is just the latest of many bad falls he's had in the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > > > doctor) was extremely concerned about Dad's breathlessness and was worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle in > > > > the behind which explains his extreme pain and that he would need further > > > > tests to determine if he has a blood clot (which can be fatal) although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > > > dangerous situation whether we were to treat a clot or ignore it. To treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > > > on this medication, he could bleed to death. But if he does have a clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > > > that the only thing you can be sure of with this disease is that you can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > > > guess I just wanted to put these horrible feelings into words as Dad seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Cassie, Your posting to Tania is very hopeful and encouraging.  It's not very often that you read of someone sharing a bed with a spouse who has dementia until the very end.  More often than not, most aren't able to do this and the spouse ends up in a NH.  My husband has been the perfect partner for me.  We've been married for 43 wonderful years and he deserves all the best that I can give him.  I, too,  want very much to lay by his side until the very end; but have heard so much of hallucinations, delusions, aggressiveness, etc.;  none of which he has shown so far.  How have you dealt with these adversities.  Did you have helpers and how many and how much.  I'm so glad you stayed on this site to help those of us who are still on this very uncertain and scary journey. Teri Subject: Re: For Tania To: LBDcaregivers Date: Wednesday, March 28, 2012, 7:47 PM  You know, that's a great idea! I'm going to suggest all of this to Mum. Neither Mum nor Dad are that great with trying new things but if it means she and Dad get some better quality sleep, surely they'll be up for it!? Thanks Cassie. Tania... > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > > > he said he had. This is just the latest of many bad falls he's had in the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > > > doctor) was extremely concerned about Dad's breathlessness and was worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle in > > > > the behind which explains his extreme pain and that he would need further > > > > tests to determine if he has a blood clot (which can be fatal) although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > > > dangerous situation whether we were to treat a clot or ignore it. To treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > > > on this medication, he could bleed to death. But if he does have a clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > > > that the only thing you can be sure of with this disease is that you can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > > > guess I just wanted to put these horrible feelings into words as Dad seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2012 Report Share Posted March 28, 2012 Cassie, Your posting to Tania is very hopeful and encouraging.  It's not very often that you read of someone sharing a bed with a spouse who has dementia until the very end.  More often than not, most aren't able to do this and the spouse ends up in a NH.  My husband has been the perfect partner for me.  We've been married for 43 wonderful years and he deserves all the best that I can give him.  I, too,  want very much to lay by his side until the very end; but have heard so much of hallucinations, delusions, aggressiveness, etc.;  none of which he has shown so far.  How have you dealt with these adversities.  Did you have helpers and how many and how much.  I'm so glad you stayed on this site to help those of us who are still on this very uncertain and scary journey. Teri Subject: Re: For Tania To: LBDcaregivers Date: Wednesday, March 28, 2012, 7:47 PM  You know, that's a great idea! I'm going to suggest all of this to Mum. Neither Mum nor Dad are that great with trying new things but if it means she and Dad get some better quality sleep, surely they'll be up for it!? Thanks Cassie. Tania... > > > > > > > ** > > > > > > > > > > > > Hi all. It's been a while since I posted on here last but that's not to > > > > say lots of stuff hasn't happened. But it's taken a fairly severe turn for > > > > the worse of late. > > > > > > > > A couple of weeks ago, Mum left Dad (dx PD 2010 then LBD 2011 and finally > > > > PDD 2012) for a few minutes and after she'd been home for a while, noticed > > > > a huge dent in the side of the oven. She asked Dad if he'd had a fall and > > > > he said he had. This is just the latest of many bad falls he's had in the > > > > past couple of years. But this time it's worse. > > > > > > > > Dad's right buttock was extremely sore/tender after the fall and after not > > > > getting any better, we took him to see his doctor (GP) on Thursday. He (the > > > > doctor) was extremely concerned about Dad's breathlessness and was worried > > > > he may have a clot somewhere. Long story short, after 8.5 hours in > > > > emergency and x-rays, blood tests, ECGs, etc later, they said Dad had > > > > (thank God) no broken bones but does have a damaged piriformis muscle in > > > > the behind which explains his extreme pain and that he would need further > > > > tests to determine if he has a blood clot (which can be fatal) although the > > > > blood tests were indicating that there was. Now we have to wait until > > > > Tuesday for a " VQ " scan to find out if there is indeed a clot. > > > > > > > > Aside from the obvious danger of the clot, the GP has advised that it is a > > > > dangerous situation whether we were to treat a clot or ignore it. To treat > > > > it, Dad would need to take Warfarin - a powerful blood thinner. He is > > > > already on blood thinners for his heart but this is way more powerful. > > > > Warfarin would probably help the clot but if Dad were to have a fall whilst > > > > on this medication, he could bleed to death. But if he does have a clot and > > > > it's left untreated, it may be OK, but could also be fatal. > > > > > > > > When Dad was diagnosed with this awful disease, I pictured him dying from > > > > perhaps pneumonia, a few years down the track. Now, and only now, I realise > > > > that the only thing you can be sure of with this disease is that you can't > > > > be sure of anything. > > > > > > > > Thanks for listening. I don't quite know what it is I'm trying to say. I > > > > guess I just wanted to put these horrible feelings into words as Dad seems > > > > to be worsening and it's heartbreaking. > > > > > > > > Tania.... > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Kate Knapp, OIT > > > University of Minnesota > > > > > > > > > You were born with certain gifts and talents. > > > In kindergarten you were taught to share. > > > The world needs all of the gifts it can get. > > > Don't be shy. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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