Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 How your husband's eyes have been opened. I feel deeply for what he has experienced and what you are all feeling. I'm so with you in your sentiments. , Oakville Ont. Mom 92, 12 1/2 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of days behind closed eyes. Eltroxin, Tylenol 1g 3 times a day, Mobicox twice a day Off Aricept since Feb./06 > > My husband just phoned me. He spent last night with my in-laws > because his dad had been asking him to come for a visit. He was > very emotional on the phone. You have to understand that my husband > is a former Army Airborne Ranger and showing his sad emotions is > something that doesn't come very easy to him. Anyhow, he told me > how much it hurt to tell his father goodbye this morning. He always > worries that each visit with him will be his last. He said this > morning, he had to assist his mom with helping his father go to the > bathroom. They had to disrobe him (waist down) and sit him on the > toilet. My husband said that, later, my FIL came out of his bedroom > holding his Depends in one hand and being completely undressed, > except for his shirt. He had to help him get his Depends on. He > said his father has no dignity left and that's so true. He said the > hard part is knowing that his father would not want to live this > way. He thinks if the opportunity came up, his father would choose > to end his life. My husband even said he wishes it were all over > for him. How heartbreaking it is to reach that point! Though his > disease is progressing rapidly, I still see it as a slow, painful > demise. > > > Thanks, again, for listening. > > April > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 April, I think it is harder on us to have to watch the slow decline than it is for those who are going through it. I am not saying those who go through it don't have a hard time, but we are sooo.. aware of what it all means. It does allow your husband time to say his goodbyes. Even if that is to help your MIL. It is always sad to know we are not going to go on forever. And it looks like your husband is starting to really realize that. Lots of hugs to you both. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Antoinette- Have you looked into taking a FMLA so you can spend time with your lo? You can either take 12 weeks all at once or spread the 12 wks out over a one yr. period. At the end of the yr., you can renew the Family Medical Leave of Absence. I renewed mine for 4 years. I used my leave in bits in pieces. Sometimes I took 2 hrs off, other times I took a week off, depending on the needs of the situation. You will find FMLA online. I think a employer has to have 50 employees to participate. It is truly a wonderful program. I would have never survived my Dad's illness without the flexability the program gave me. We also had hospice for a couple of years. Susposedly, you are only suspose to have Hospice for 6 months, but with Dad and LBD the decline was continual. Just make sure the nurse documents well of your lo's decline. Our Hospice considered dropping Dad, but had done such a great job of documenting not only what she saw, but quoted our comments. I also kept a logue of all of Dad's falls. Gotta shut my computer off. It is storming here in Delaware. I hope this info helped. Gerry Daughter and caregiver of Dick Deverell, who passed away 9/11/95 after more than a 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 I agree - seeing that the bulk of this list is women... And considering my brother's way of dealing with my mother's situation is avoiding it all together. He hasn't been home for a visit (from out of country) since February - and before that, October. It's frustrating to say the least - b/c my mother is always asking for him and I know he won't be around any time soon. And on top of it all - he doesn't have email - refuses to get it I feel - which would at least allow us to communicate what's going on with his mother and his siblings. He's been on my sister's & my s*** list - can you tell? > > I think it is harder for a son to see his father in > that kind of condition, because men have the idea that > they don't need help; then when they see that it > sometimes happens, it really is hard on them. My son, > I think, is having a harder time seein his dad than > the girls do, but, I think he has accepted it more > lately. They also are probably thinking that it can > happen to them, too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 What great advice. I forgot about FMLA - and could have certainly used it back when mom was really bad... Instead I made up the time I took by working extra hours and/or using vaca days. Although had I used FMLA instead, for me, it would have been unpaid leave. But it's good to have nonetheless as a last resort... > April, > > I think it is harder on us to have to watch the slow decline than it is for those who are going through it. I am not saying those who go through it don't have a hard time, but we are sooo.. aware of what it all means. It does allow your husband time to say his goodbyes. Even if that is to help your MIL. > > It is always sad to know we are not going to go on forever. And it looks like your husband is starting to really realize that. > > Lots of hugs to you both. > > Donna R > > Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: > > http://www.lewybodydementia.org > > Heartbroken > > My husband just phoned me. He spent last night with my in-laws > because his dad had been asking him to come for a visit. He was > very emotional on the phone. You have to understand that my husband > is a former Army Airborne Ranger and showing his sad emotions is > something that doesn't come very easy to him. Anyhow, he told me > how much it hurt to tell his father goodbye this morning. He always > worries that each visit with him will be his last. He said this > morning, he had to assist his mom with helping his father go to the > bathroom. They had to disrobe him (waist down) and sit him on the > toilet. My husband said that, later, my FIL came out of his bedroom > holding his Depends in one hand and being completely undressed, > except for his shirt. He had to help him get his Depends on. He > said his father has no dignity left and that's so true. He said the > hard part is knowing that his father would not want to live this > way. He thinks if the opportunity came up, his father would choose > to end his life. My husband even said he wishes it were all over > for him. How heartbreaking it is to reach that point! Though his > disease is progressing rapidly, I still see it as a slow, painful > demise. > > Thanks, again, for listening. > > April > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Antoinette and - I forgot to mention that inorder to get paid, I had to use my vacation time and when the vacation time was used up, I would not be compensated. What was most helpful to me was that I did have to prearrange time off. I would just call and say I am having problems with my Dad. Nothing was ever disputed. I don't think the employer is allowed to hassle the employee in this situation. I worked at a very large and busy hospital on the midnight shift and we needed every nurse, but the staff and management pulled together in my absence. Fortunately, I retired as planned for the last year of Dad's life. It was really good to have that time with him, take care of him and not worry about work. Gerry I am late for an appointment, no time to proofread! Heartbroken > > My husband just phoned me. He spent last night with my in-laws > because his dad had been asking him to come for a visit. He was > very emotional on the phone. You have to understand that my husband > is a former Army Airborne Ranger and showing his sad emotions is > something that doesn't come very easy to him. Anyhow, he told me > how much it hurt to tell his father goodbye this morning. He always > worries that each visit with him will be his last. He said this > morning, he had to assist his mom with helping his father go to the > bathroom. They had to disrobe him (waist down) and sit him on the > toilet. My husband said that, later, my FIL came out of his bedroom > holding his Depends in one hand and being completely undressed, > except for his shirt. He had to help him get his Depends on. He > said his father has no dignity left and that's so true. He said the > hard part is knowing that his father would not want to live this > way. He thinks if the opportunity came up, his father would choose > to end his life. My husband even said he wishes it were all over > for him. How heartbreaking it is to reach that point! Though his > disease is progressing rapidly, I still see it as a slow, painful > demise. > > Thanks, again, for listening. > > April > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Thanks , You are right we have started my Mom on minced food. Medicine is getting hard for her. We have also stopped thin liquids. We are thicking thin liquids with Thicken. Thanks for your input. stimtimminss wrote: Hi Antoinette, If your mother is having trouble swallowing you should try giving her minced or pureed foods, whichever she can manage, minced being the preferred choice for fibre and texture. As well, anything really cold should go down well. Piper found it a good way to get in meds at end of life and when my mother reaches that time, it will be done. Right now she takes them in a morose looking concoction of pureed prunes and applesauce. Yuk! But the fibre is there. , Oakville Ont. Mom 92, 12 1/2 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of days behind closed eyes. Eltroxin, Tylenol 1g 3 times a day, Mobicox twice a day Off Aricept since Feb./06 > April, > > I think it is harder on us to have to watch the slow decline than it is for those who are going through it. I am not saying those who go through it don't have a hard time, but we are sooo.. aware of what it all means. It does allow your husband time to say his goodbyes. Even if that is to help your MIL. > > It is always sad to know we are not going to go on forever. And it looks like your husband is starting to really realize that. > > Lots of hugs to you both. > > Donna R > > Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: > > http://www.lewybodydementia.org > > Heartbroken > > My husband just phoned me. He spent last night with my in-laws > because his dad had been asking him to come for a visit. He was > very emotional on the phone. You have to understand that my husband > is a former Army Airborne Ranger and showing his sad emotions is > something that doesn't come very easy to him. Anyhow, he told me > how much it hurt to tell his father goodbye this morning. He always > worries that each visit with him will be his last. He said this > morning, he had to assist his mom with helping his father go to the > bathroom. They had to disrobe him (waist down) and sit him on the > toilet. My husband said that, later, my FIL came out of his bedroom > holding his Depends in one hand and being completely undressed, > except for his shirt. He had to help him get his Depends on. He > said his father has no dignity left and that's so true. He said the > hard part is knowing that his father would not want to live this > way. He thinks if the opportunity came up, his father would choose > to end his life. My husband even said he wishes it were all over > for him. How heartbreaking it is to reach that point! Though his > disease is progressing rapidly, I still see it as a slow, painful > demise. > > Thanks, again, for listening. > > April > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi Toni- So many things can change the disposition and even conscious level of our lo's with LBD. Top of the list is Urinary Tract Infection (UTI0) and many medications. My Dad usually showed improvement after being on antibiotics for a couple of days, but he did not make a significant recovery for 1-2 weeks. If you suspect a UTI, try to get a presciption ASAP. XOXOXO Gerry Wilmington, De. Daughter and caregiver of Dick Deverell, who passed away on 9/11/05 after a ore than 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi Gerry, The hospice nurse came out and she does have a UTI. Hospice is great, they tested her and had the results within minutes and the medicine was at my Dad door in 25 minutes. I am hoping she will be better after taking the antibiotics in a couple to days. Thanks. Gerry Deverell wrote: Hi Toni- So many things can change the disposition and even conscious level of our lo's with LBD. Top of the list is Urinary Tract Infection (UTI0) and many medications. My Dad usually showed improvement after being on antibiotics for a couple of days, but he did not make a significant recovery for 1-2 weeks. If you suspect a UTI, try to get a presciption ASAP. XOXOXO Gerry Wilmington, De. Daughter and caregiver of Dick Deverell, who passed away on 9/11/05 after a ore than 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hi Gerry, They sure are. I have another question though. The Dad is not doing the things that they are instructing him to do. For example, not give her thin liquids, he still wants to give them to her. They said not to give her a straw to drink with because the liquids is going down her throat to fast but he is still giving them to her. I don't understand why he is not doing what they tell us to do. I ask him and he doesn't have a good reason. Do you experience anything like this? Gerry Deverell wrote: I am glad your Mom received such prompt treatment. Isn't Hospice wonderful? XOXOXO Gerry Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 I have a suggestion on your post, Toni. My sister AND her husband had Dementia. She was doing all she ever did to help him, and it wasn't working. She didn't understand he was terribly sick, and certainly didn't know she was. He died over a year ago. She is still alive, but at late stage 6 with AD. Perhaps something like that is happening in the situation you talked about. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/28/2006 5:11:06 PM Central Daylight Time, toni8587@... writes: Hi Gerry, They sure are. I have another question though. The Dad is not doing the things that they are instructing him to do. For example, not give her thin liquids, he still wants to give them to her. They said not to give her a straw to drink with because the liquids is going down her throat to fast but he is still giving them to her. I don't understand why he is not doing what they tell us to do. I ask him and he doesn't have a good reason. Do you experience anything like this? Gerry Deverell wrote: I am glad your Mom received such prompt treatment. Isn't Hospice wonderful? XOXOXO Gerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Toni- I sure do and know your frustrations well! My Mother live in the adjoining condo. We share a common driveway. We live in an active over 55 community. I am not sure if it was a good or bad situation when Dad was so sick. I was always there. I am also an RN, so all decisions fell on my shoulders. My Mom called me the boss. That's not me at all. I am not a bossy person. I kept a Fisher Price monitor on, so when Dad called I could run real fast next door. Many times Mom was unaware of Dad calling out. Many issues that concerned me were safety issues. I would tell Mom to put Dad side rails up on his bed-frequently they were left down. She refused to remove her throw rugs even when I explained this was a saftey factor. My Mother weights 110 pound and is an amputee. I would tell her to call me when Dad wanted to get up. Many times she did not and did it herself. She risked both of them falling. Most of the time I used the Fisher Price Monitor and would beat her to the punch and run over there. The main aggravation was my Mom refused to hire additional help as Dad deteriiorated. We had a grant from Elder Care which provided 2 four hrs periods per week and then we eventually had Hospice and they would come in and bath him. The care he received was not enough for the 24/7 care he required at home. As I said my Mom would rather do it herself. My Mom has a nice nest egg, but she refused to spend it for more help. She would say it she wanted her kids to get a nice inheritance. Dad died Sept. 11, 2005. Since that time my Mom's mental clarity has really deteriorated. I find her repeating statements and questions all the time. She misses apppointments and now when I have her out in the car, she will claim she doesn't know where she is. Fortunately, she is slowly reliinguishing her driving. She just drives to the corner store. When she plays cards or goes to her knitting group, she has one of her younger friends drive her car. My Mother is 87, but looks 57. Anyway, thinking back, I am suscpious now that my Mom was not totally cognitive when Dad was ill. I was so focused on him, I just thought she was stubborn and trying to keep control of the situation. So, Toni, you are not alone in your frustrations. XOXOXO Gerry Wilmington, De. Daughter and caregiver of Dick Deverell, who died 9/11/05 after a more than 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Gerry, You know, you bring up a good point. My Dad's driving is getting bad and I find myself repeating things to him. We have been so absorbed in my Mom that I forget that he is 80 years old and maybe he is not totally cognitive right now. I will try to be a little more understanding with the situation. The only way things are done the way they should be is when I am there. Thanks for the help. Gerry Deverell wrote: Toni- I sure do and know your frustrations well! My Mother live in the adjoining condo. We share a common driveway. We live in an active over 55 community. I am not sure if it was a good or bad situation when Dad was so sick. I was always there. I am also an RN, so all decisions fell on my shoulders. My Mom called me the boss. That's not me at all. I am not a bossy person. I kept a Fisher Price monitor on, so when Dad called I could run real fast next door. Many times Mom was unaware of Dad calling out. Many issues that concerned me were safety issues. I would tell Mom to put Dad side rails up on his bed-frequently they were left down. She refused to remove her throw rugs even when I explained this was a saftey factor. My Mother weights 110 pound and is an amputee. I would tell her to call me when Dad wanted to get up. Many times she did not and did it herself. She risked both of them falling. Most of the time I used the Fisher Price Monitor and would beat her to the punch and run over there. The main aggravation was my Mom refused to hire additional help as Dad deteriiorated. We had a grant from Elder Care which provided 2 four hrs periods per week and then we eventually had Hospice and they would come in and bath him. The care he received was not enough for the 24/7 care he required at home. As I said my Mom would rather do it herself. My Mom has a nice nest egg, but she refused to spend it for more help. She would say it she wanted her kids to get a nice inheritance. Dad died Sept. 11, 2005. Since that time my Mom's mental clarity has really deteriorated. I find her repeating statements and questions all the time. She misses apppointments and now when I have her out in the car, she will claim she doesn't know where she is. Fortunately, she is slowly reliinguishing her driving. She just drives to the corner store. When she plays cards or goes to her knitting group, she has one of her younger friends drive her car. My Mother is 87, but looks 57. Anyway, thinking back, I am suscpious now that my Mom was not totally cognitive when Dad was ill. I was so focused on him, I just thought she was stubborn and trying to keep control of the situation. So, Toni, you are not alone in your frustrations. XOXOXO Gerry Wilmington, De. Daughter and caregiver of Dick Deverell, who died 9/11/05 after a more than 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Gerry, You know, you bring up a good point. My Dad's driving is getting bad and I find myself repeating things to him. We have been so absorbed in my Mom that I forget that he is 80 years old and maybe he is not totally cognitive right now. I will try to be a little more understanding with the situation. The only way things are done the way they should be is when I am there. Thanks for the help. Gerry Deverell wrote: Toni- I sure do and know your frustrations well! My Mother live in the adjoining condo. We share a common driveway. We live in an active over 55 community. I am not sure if it was a good or bad situation when Dad was so sick. I was always there. I am also an RN, so all decisions fell on my shoulders. My Mom called me the boss. That's not me at all. I am not a bossy person. I kept a Fisher Price monitor on, so when Dad called I could run real fast next door. Many times Mom was unaware of Dad calling out. Many issues that concerned me were safety issues. I would tell Mom to put Dad side rails up on his bed-frequently they were left down. She refused to remove her throw rugs even when I explained this was a saftey factor. My Mother weights 110 pound and is an amputee. I would tell her to call me when Dad wanted to get up. Many times she did not and did it herself. She risked both of them falling. Most of the time I used the Fisher Price Monitor and would beat her to the punch and run over there. The main aggravation was my Mom refused to hire additional help as Dad deteriiorated. We had a grant from Elder Care which provided 2 four hrs periods per week and then we eventually had Hospice and they would come in and bath him. The care he received was not enough for the 24/7 care he required at home. As I said my Mom would rather do it herself. My Mom has a nice nest egg, but she refused to spend it for more help. She would say it she wanted her kids to get a nice inheritance. Dad died Sept. 11, 2005. Since that time my Mom's mental clarity has really deteriorated. I find her repeating statements and questions all the time. She misses apppointments and now when I have her out in the car, she will claim she doesn't know where she is. Fortunately, she is slowly reliinguishing her driving. She just drives to the corner store. When she plays cards or goes to her knitting group, she has one of her younger friends drive her car. My Mother is 87, but looks 57. Anyway, thinking back, I am suscpious now that my Mom was not totally cognitive when Dad was ill. I was so focused on him, I just thought she was stubborn and trying to keep control of the situation. So, Toni, you are not alone in your frustrations. XOXOXO Gerry Wilmington, De. Daughter and caregiver of Dick Deverell, who died 9/11/05 after a more than 4 yr. battle with LBD. Heartbroken My husband just phoned me. He spent last night with my in-laws because his dad had been asking him to come for a visit. He was very emotional on the phone. You have to understand that my husband is a former Army Airborne Ranger and showing his sad emotions is something that doesn't come very easy to him. Anyhow, he told me how much it hurt to tell his father goodbye this morning. He always worries that each visit with him will be his last. He said this morning, he had to assist his mom with helping his father go to the bathroom. They had to disrobe him (waist down) and sit him on the toilet. My husband said that, later, my FIL came out of his bedroom holding his Depends in one hand and being completely undressed, except for his shirt. He had to help him get his Depends on. He said his father has no dignity left and that's so true. He said the hard part is knowing that his father would not want to live this way. He thinks if the opportunity came up, his father would choose to end his life. My husband even said he wishes it were all over for him. How heartbreaking it is to reach that point! Though his disease is progressing rapidly, I still see it as a slow, painful demise. Thanks, again, for listening. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Thanks Imogene. You bring up a good point. I didn't think of it that way. Iward27663@... wrote: I have a suggestion on your post, Toni. My sister AND her husband had Dementia. She was doing all she ever did to help him, and it wasn't working. She didn't understand he was terribly sick, and certainly didn't know she was. He died over a year ago. She is still alive, but at late stage 6 with AD. Perhaps something like that is happening in the situation you talked about. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/28/2006 5:11:06 PM Central Daylight Time, toni8587@... writes: Hi Gerry, They sure are. I have another question though. The Dad is not doing the things that they are instructing him to do. For example, not give her thin liquids, he still wants to give them to her. They said not to give her a straw to drink with because the liquids is going down her throat to fast but he is still giving them to her. I don't understand why he is not doing what they tell us to do. I ask him and he doesn't have a good reason. Do you experience anything like this? Gerry Deverell wrote: I am glad your Mom received such prompt treatment. Isn't Hospice wonderful? XOXOXO Gerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Thanks Imogene. You bring up a good point. I didn't think of it that way. Iward27663@... wrote: I have a suggestion on your post, Toni. My sister AND her husband had Dementia. She was doing all she ever did to help him, and it wasn't working. She didn't understand he was terribly sick, and certainly didn't know she was. He died over a year ago. She is still alive, but at late stage 6 with AD. Perhaps something like that is happening in the situation you talked about. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/28/2006 5:11:06 PM Central Daylight Time, toni8587@... writes: Hi Gerry, They sure are. I have another question though. The Dad is not doing the things that they are instructing him to do. For example, not give her thin liquids, he still wants to give them to her. They said not to give her a straw to drink with because the liquids is going down her throat to fast but he is still giving them to her. I don't understand why he is not doing what they tell us to do. I ask him and he doesn't have a good reason. Do you experience anything like this? Gerry Deverell wrote: I am glad your Mom received such prompt treatment. Isn't Hospice wonderful? XOXOXO Gerry Quote Link to comment Share on other sites More sharing options...
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