Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Hi Marcie, My motto always has been " If life passes out lemons make lemonade out of it. " And that is what I did with my husband. I made everyday count for him at the nursing home, so he would not be depressed. I of course, was there everyday with him for several hours, except for on major holidays like Christmas, Thanksgiving, and Easter I would spend with my kids. I made it a game for Jim everyday at the nursing home. I noticed on the first week that men do not communicate, they sit alone and occasionally a nurse passes by and gives them attention and the women were all talking and communicating between themselves in the halls. I walked my husband in his wheelchair from room to room in his hall and introduced him to every lady and told them we were new and going around to meet everyone. Of course, most ladies are nurturing and great at gab. I found the ones that were mostly alert and each one told me not to worry they would watch over Jim and they did! He never sat alone. Everytime I walked in, there were at least 3 resident women around him. He of course enjoyed the company. Jim was always very social and I think that would have depressed him if no one paid attention to him. The ladies kept me informed of Jim's day too : ) Jim couldn't really communicate or talk, he talked in a whisper, but that didn't matter to the ladies, they just kept on talking to him no matter what. It was good stimulation for him. He was the only man getting attention, the rest just sat in the halls sleeping or staring at the walls. Jim and I had been on many cruises in his healthy years and he enjoyed cruises. Sometimes I told little lies to Jim, just to make his days brighter. I know some do not like to lie about anything, but my feeling is if it boosts the person's life a little why not. Jim having dementia did not look into the fine details to know any different. In the beginning when he asked where he was, I didn't tell him he was in a nursing home. I told him we were on a cruise. They had activities, entertainment, dining room, a cabin to sleep in and I pointed all that out and he believed it. Why burst his bubble and make him depressed. I would bring snacks for " Happy Hour " in the summer and a bottle of juice for him, later I had to thicken the juice, but we sat out on the patio on nice days and I told him it was the deck of the ship. Even though cars were driving by, he did not notice or think any different, to him he was on a cruise and enjoying it. The CNAs would walk by and Jim would salute them thinking they were the crew on the ship and they would salute back to Jim. This went on for 3 years. Then the CNAs began to change over and new ones came in and they did not know the routine of saluting when they passed Jim. I believe Jim knew the last few years that it was a nursing home, but I didn't discuss it with him nor did he ask me. It was very touching when Jim died, because the last remaining CNAs and staff at the nursing home remembered Jim's salute and when the coroner brought him out of the room, they went up and down the hall and closed every door to every room and no one was allowed to pass through when Jim was being taken out and they all stood at attention and saluted as he passed by. It was so touching to see. I, in all my years with Jim there have never seen them do that for any other death. I was really in awe over that. They never knew the story of why Jim saluted them, but they always would return Jim's salute and just to keep him alert if he did not salute them when they passed by, they would stop and keep saluting him until he did return the salute to them. Because I spent so much time at the nursing home, I signed up to be a volunteer. I decided to make myself useful while being there, because Jim slept a lot. They put me in charge of Black Jack Night and I was the dealer. Jim thought it was fun to watch me play cards with all the people. He had fun too even though he did not play. He could not reason numbers anymore. It's all about making the most of what you have at the time and you need to enjoy every minute you have with them, because the time goes so fast and they progress to the end. I never regreted putting Jim into the nursing home, it was the best place for him at that time and I tried to keep it as happy as could be for him. I tried to give him a life, even though he really didn't have one. Marcie, I hear you about the in-home caregivers. I fired 4 or 5 before settling on one. The first told me that Jim asked her to massage his back, so he could sleep and she laid down next to him. I came home early from work and she was next to him sleeping. Another was not from an agency, but recommended to me by a friend, so I hired him for a day. When I returned several hours later Jim was on his own and there was a message for me on the phone from the caregiver saying Jim got aggressive with him and he did not have to put up with that and left. It was before I had a cell phone. Another time I was sick at work and they sent me home early and I walked in on the caregiver watching a soap opera and Jim in the kitchen with his head face down in his lunch sound asleep. I made the mistake of firing her on a Thursday and asking her to come back on Friday, so I could go to work. LOL She stole some stuff and called me at work and said she had an emergency call from her child at school and had to leave and Jim was left on his own until I could get home. I noticed some of my things had disappeared and called the agency, but it was her word against mine and they said they had never had a complaint on her before, so the case was dropped. The final guy I kept for awhile because Jim bonded with him and it was his only friend, since all that he thought were true friends abandoned him during his illness. This caregiver broke a new faucet that I had just had put in, it was a designer faucet when I had my kitchen redone. The caregiver went to the hardware store and replaced my faucet with another from the hardware store and thought I would not notice. HA! He had done other major damage to the house, but I kept him because Jim liked him and he did whatever Jim asked of him. I really couldn't wait to get out from the caregivers. I think there was more peace and less stress for either of us at the nursing home. I was always stressed with the caregivers at the house and it came off on Jim when I was stressed. It was not a good situation and much better for both of us when he went to the nursing home. That was our situation, but everyone's is different and I know families that have kept their loved ones at home the entire time. There is no right or wrong. It is what everyone is comfortable with. Not only does the LO with Lewy Body have to be comfortable, but also the family or other taking care of that person. It's all what best fits your situation. You need to take care of yourself too. It's very important or you will end up very sick too. Bless you Marcie, we are all in the same boat, it's just what is best for each one's survival. By the way, you are doing the group communicating marvelously. I appreciate hearing from you. Jan Colello San Francisco Bay Area, CA Husband, Jim dx w/Parkinsons in 93 by one doctor and in 96 by his neurologist. In 2000 hallucinations, delusions, and confusion showed up and in 2003 Jim was dx w/LBD by his neurologist Jim deceased, January 22, 2011. From: Ann on <aharrison@... <mailto:aharrison%40ibphoenix.com> > Subject: Re: Greetings! To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Date: Monday, June 6, 2011, 10:50 AM Tania, > We are all quite worried, not to mention fearful, of what lies ahead. We > promised Dad we would never put him into a nursing home. Has anyone else > been able to look after a loved one with LBD at home? If so, I'd be > interested to hear how that went. My Dad stayed at home to the end, as he wanted. However, it took a lot of help and was even more expensive than a nursing home. At first, he had helpers who came in to make meals, shop, clean, etc. When he got confused while he was alone, he had a single button to push to call me. That worked for a year or so. At the end, he needed someone with him all the time and two people for bathing. Even though he was in the same bedroom he'd slept in for 45 years, he often said he wanted to go home. The physical and psychological cost of caring for a demented loved one is enormous. We were lucky that Dad was generally very pleasant and only threatened his caregivers a few times. Others on the list were beaten by their spouse or parent. Often patients accuse their caregivers of stealing and abusing them in other ways. What I'm trying to say is that you should consider your father's wishes, but also consider the impact his care will have on the rest of your family. Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2011 Report Share Posted June 7, 2011 Janet thank you for this email.  It is encouraging to us to keep trying to make the most of each day and not become discouraged about what might be coming.  But as you show even when the worst comes we can try to make the most of it.  We all need to think of ways to do this and how we do that will be unique to each of us.  Thank you for reminding us to try to stay positive no matter what stage of the disease we are in.  Blessings, Ruth Ann  Ruth Ann G. caregiver age 70 Husband Lee age 73 with LBD. Retired EE Engr. Professor. Diagnosed 2006 with LBD at Cleveland Clinic. Phase II ________________________________ To: LBDcaregivers Sent: Monday, June 6, 2011 10:10 PM Subject: RE: Marcie/ Greetings!  Hi Marcie, My motto always has been " If life passes out lemons make lemonade out of it. " And that is what I did with my husband. I made everyday count for him at the nursing home, so he would not be depressed. I of course, was there everyday with him for several hours, except for on major holidays like Christmas, Thanksgiving, and Easter I would spend with my kids. I made it a game for Jim everyday at the nursing home. I noticed on the first week that men do not communicate, they sit alone and occasionally a nurse passes by and gives them attention and the women were all talking and communicating between themselves in the halls. I walked my husband in his wheelchair from room to room in his hall and introduced him to every lady and told them we were new and going around to meet everyone. Of course, most ladies are nurturing and great at gab. I found the ones that were mostly alert and each one told me not to worry they would watch over Jim and they did! He never sat alone. Everytime I walked in, there were at least 3 resident women around him. He of course enjoyed the company. Jim was always very social and I think that would have depressed him if no one paid attention to him. The ladies kept me informed of Jim's day too : ) Jim couldn't really communicate or talk, he talked in a whisper, but that didn't matter to the ladies, they just kept on talking to him no matter what. It was good stimulation for him. He was the only man getting attention, the rest just sat in the halls sleeping or staring at the walls. Jim and I had been on many cruises in his healthy years and he enjoyed cruises. Sometimes I told little lies to Jim, just to make his days brighter. I know some do not like to lie about anything, but my feeling is if it boosts the person's life a little why not. Jim having dementia did not look into the fine details to know any different. In the beginning when he asked where he was, I didn't tell him he was in a nursing home. I told him we were on a cruise. They had activities, entertainment, dining room, a cabin to sleep in and I pointed all that out and he believed it. Why burst his bubble and make him depressed. I would bring snacks for " Happy Hour " in the summer and a bottle of juice for him, later I had to thicken the juice, but we sat out on the patio on nice days and I told him it was the deck of the ship. Even though cars were driving by, he did not notice or think any different, to him he was on a cruise and enjoying it. The CNAs would walk by and Jim would salute them thinking they were the crew on the ship and they would salute back to Jim. This went on for 3 years. Then the CNAs began to change over and new ones came in and they did not know the routine of saluting when they passed Jim. I believe Jim knew the last few years that it was a nursing home, but I didn't discuss it with him nor did he ask me. It was very touching when Jim died, because the last remaining CNAs and staff at the nursing home remembered Jim's salute and when the coroner brought him out of the room, they went up and down the hall and closed every door to every room and no one was allowed to pass through when Jim was being taken out and they all stood at attention and saluted as he passed by. It was so touching to see. I, in all my years with Jim there have never seen them do that for any other death. I was really in awe over that. They never knew the story of why Jim saluted them, but they always would return Jim's salute and just to keep him alert if he did not salute them when they passed by, they would stop and keep saluting him until he did return the salute to them. Because I spent so much time at the nursing home, I signed up to be a volunteer. I decided to make myself useful while being there, because Jim slept a lot. They put me in charge of Black Jack Night and I was the dealer. Jim thought it was fun to watch me play cards with all the people. He had fun too even though he did not play. He could not reason numbers anymore. It's all about making the most of what you have at the time and you need to enjoy every minute you have with them, because the time goes so fast and they progress to the end. I never regreted putting Jim into the nursing home, it was the best place for him at that time and I tried to keep it as happy as could be for him. I tried to give him a life, even though he really didn't have one. Marcie, I hear you about the in-home caregivers. I fired 4 or 5 before settling on one. The first told me that Jim asked her to massage his back, so he could sleep and she laid down next to him. I came home early from work and she was next to him sleeping. Another was not from an agency, but recommended to me by a friend, so I hired him for a day. When I returned several hours later Jim was on his own and there was a message for me on the phone from the caregiver saying Jim got aggressive with him and he did not have to put up with that and left. It was before I had a cell phone. Another time I was sick at work and they sent me home early and I walked in on the caregiver watching a soap opera and Jim in the kitchen with his head face down in his lunch sound asleep. I made the mistake of firing her on a Thursday and asking her to come back on Friday, so I could go to work. LOL She stole some stuff and called me at work and said she had an emergency call from her child at school and had to leave and Jim was left on his own until I could get home. I noticed some of my things had disappeared and called the agency, but it was her word against mine and they said they had never had a complaint on her before, so the case was dropped. The final guy I kept for awhile because Jim bonded with him and it was his only friend, since all that he thought were true friends abandoned him during his illness. This caregiver broke a new faucet that I had just had put in, it was a designer faucet when I had my kitchen redone. The caregiver went to the hardware store and replaced my faucet with another from the hardware store and thought I would not notice. HA! He had done other major damage to the house, but I kept him because Jim liked him and he did whatever Jim asked of him. I really couldn't wait to get out from the caregivers. I think there was more peace and less stress for either of us at the nursing home. I was always stressed with the caregivers at the house and it came off on Jim when I was stressed. It was not a good situation and much better for both of us when he went to the nursing home. That was our situation, but everyone's is different and I know families that have kept their loved ones at home the entire time. There is no right or wrong. It is what everyone is comfortable with. Not only does the LO with Lewy Body have to be comfortable, but also the family or other taking care of that person. It's all what best fits your situation. You need to take care of yourself too. It's very important or you will end up very sick too. Bless you Marcie, we are all in the same boat, it's just what is best for each one's survival. By the way, you are doing the group communicating marvelously. I appreciate hearing from you. Jan Colello San Francisco Bay Area, CA Husband, Jim dx w/Parkinsons in 93 by one doctor and in 96 by his neurologist. In 2000 hallucinations, delusions, and confusion showed up and in 2003 Jim was dx w/LBD by his neurologist Jim deceased, January 22, 2011. From: Ann on <aharrison@... <mailto:aharrison%40ibphoenix.com> > Subject: Re: Greetings! To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Date: Monday, June 6, 2011, 10:50 AM Tania, > We are all quite worried, not to mention fearful, of what lies ahead. We > promised Dad we would never put him into a nursing home. Has anyone else > been able to look after a loved one with LBD at home? If so, I'd be > interested to hear how that went. My Dad stayed at home to the end, as he wanted. However, it took a lot of help and was even more expensive than a nursing home. At first, he had helpers who came in to make meals, shop, clean, etc. When he got confused while he was alone, he had a single button to push to call me. That worked for a year or so. At the end, he needed someone with him all the time and two people for bathing. Even though he was in the same bedroom he'd slept in for 45 years, he often said he wanted to go home. The physical and psychological cost of caring for a demented loved one is enormous. We were lucky that Dad was generally very pleasant and only threatened his caregivers a few times. Others on the list were beaten by their spouse or parent. Often patients accuse their caregivers of stealing and abusing them in other ways. What I'm trying to say is that you should consider your father's wishes, but also consider the impact his care will have on the rest of your family. Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2011 Report Share Posted June 7, 2011 Hi Jan, I can't tell you what your e-mail means to me. It's like a life line. You were a magnificent blessing to Jim and thank you for sharing all the gems with me and the group. I am going to do exactly what you did and introduce her to all the people there. I've been trying to engage in conversations with whoever is near her. A hard part for my Mom is that her head is permanently bent looking down so unless someone kneels in front of her she doesn't see them. My mom likes the men better than the women - can be embarrassing at times - but she seems to feel more comfortable with the men. Maybe women just have a natural nurturing tendency to help the men like the women did for Jim. How did you know to do that for your husband? The story about the cruise ship was wonderful. The way he saluted everyone and they back, and the tribute the staff paid to Jim at the end brought tears to my eyes. Sadly, my Mom knows exactly where she is and asks why I can't take her home, and is a pro at putting guilt on me. She still has the ability to speak for sure, but her reasoning is not there and hasn't been for quite a while. I'm always trying to come up with ways to cheer her up - taking little gifts, photos. Sometimes just new toiletries cheers her up. She doesn't read any longer, can't focus on TV, but I do play music for her at times. She loves hearing about the family, etc. but she can drop off to sleep right in the middle of our conversation too. The thought did come to me last week that maybe I could volunteer and after reading your e-mail I will definitely inquire about that. That way if she does fall asleep there will be others I can interact with. And thank you for showing me that although this disease does not have a cure, and will probably get even worse before the end (stopped reading anymore about LBD for a while) we can deal with it in many creative ways and still be there for our loved ones. And thanks for all the words of wisdom about understanding that the choice of putting our loved ones in a nursing home or in a dementia facility can be the best thing - for them and us. You're right that there is no right or wrong. Everyone's decision is uniquely different. Thanks for reminding me of all these things. Bless you Jan. I feel re-charged again, ready to make more " lemonade " from the latest batch of lemons. I hope in the future I can bring some wisdom and light to another who is overwhelmed and struggling in their journey with a loved one. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Monday, June 06, 2011 10:11 PM To: LBDcaregivers Subject: RE: Marcie/ Greetings! Hi Marcie, My motto always has been " If life passes out lemons make lemonade out of it. " And that is what I did with my husband. I made everyday count for him at the nursing home, so he would not be depressed. I of course, was there everyday with him for several hours, except for on major holidays like Christmas, Thanksgiving, and Easter I would spend with my kids. I made it a game for Jim everyday at the nursing home. I noticed on the first week that men do not communicate, they sit alone and occasionally a nurse passes by and gives them attention and the women were all talking and communicating between themselves in the halls. I walked my husband in his wheelchair from room to room in his hall and introduced him to every lady and told them we were new and going around to meet everyone. Of course, most ladies are nurturing and great at gab. I found the ones that were mostly alert and each one told me not to worry they would watch over Jim and they did! He never sat alone. Everytime I walked in, there were at least 3 resident women around him. He of course enjoyed the company. Jim was always very social and I think that would have depressed him if no one paid attention to him. The ladies kept me informed of Jim's day too : ) Jim couldn't really communicate or talk, he talked in a whisper, but that didn't matter to the ladies, they just kept on talking to him no matter what. It was good stimulation for him. He was the only man getting attention, the rest just sat in the halls sleeping or staring at the walls. Jim and I had been on many cruises in his healthy years and he enjoyed cruises. Sometimes I told little lies to Jim, just to make his days brighter. I know some do not like to lie about anything, but my feeling is if it boosts the person's life a little why not. Jim having dementia did not look into the fine details to know any different. In the beginning when he asked where he was, I didn't tell him he was in a nursing home. I told him we were on a cruise. They had activities, entertainment, dining room, a cabin to sleep in and I pointed all that out and he believed it. Why burst his bubble and make him depressed. I would bring snacks for " Happy Hour " in the summer and a bottle of juice for him, later I had to thicken the juice, but we sat out on the patio on nice days and I told him it was the deck of the ship. Even though cars were driving by, he did not notice or think any different, to him he was on a cruise and enjoying it. The CNAs would walk by and Jim would salute them thinking they were the crew on the ship and they would salute back to Jim. This went on for 3 years. Then the CNAs began to change over and new ones came in and they did not know the routine of saluting when they passed Jim. I believe Jim knew the last few years that it was a nursing home, but I didn't discuss it with him nor did he ask me. It was very touching when Jim died, because the last remaining CNAs and staff at the nursing home remembered Jim's salute and when the coroner brought him out of the room, they went up and down the hall and closed every door to every room and no one was allowed to pass through when Jim was being taken out and they all stood at attention and saluted as he passed by. It was so touching to see. I, in all my years with Jim there have never seen them do that for any other death. I was really in awe over that. They never knew the story of why Jim saluted them, but they always would return Jim's salute and just to keep him alert if he did not salute them when they passed by, they would stop and keep saluting him until he did return the salute to them. Because I spent so much time at the nursing home, I signed up to be a volunteer. I decided to make myself useful while being there, because Jim slept a lot. They put me in charge of Black Jack Night and I was the dealer. Jim thought it was fun to watch me play cards with all the people. He had fun too even though he did not play. He could not reason numbers anymore. It's all about making the most of what you have at the time and you need to enjoy every minute you have with them, because the time goes so fast and they progress to the end. I never regreted putting Jim into the nursing home, it was the best place for him at that time and I tried to keep it as happy as could be for him. I tried to give him a life, even though he really didn't have one. Marcie, I hear you about the in-home caregivers. I fired 4 or 5 before settling on one. The first told me that Jim asked her to massage his back, so he could sleep and she laid down next to him. I came home early from work and she was next to him sleeping. Another was not from an agency, but recommended to me by a friend, so I hired him for a day. When I returned several hours later Jim was on his own and there was a message for me on the phone from the caregiver saying Jim got aggressive with him and he did not have to put up with that and left. It was before I had a cell phone. Another time I was sick at work and they sent me home early and I walked in on the caregiver watching a soap opera and Jim in the kitchen with his head face down in his lunch sound asleep. I made the mistake of firing her on a Thursday and asking her to come back on Friday, so I could go to work. LOL She stole some stuff and called me at work and said she had an emergency call from her child at school and had to leave and Jim was left on his own until I could get home. I noticed some of my things had disappeared and called the agency, but it was her word against mine and they said they had never had a complaint on her before, so the case was dropped. The final guy I kept for awhile because Jim bonded with him and it was his only friend, since all that he thought were true friends abandoned him during his illness. This caregiver broke a new faucet that I had just had put in, it was a designer faucet when I had my kitchen redone. The caregiver went to the hardware store and replaced my faucet with another from the hardware store and thought I would not notice. HA! He had done other major damage to the house, but I kept him because Jim liked him and he did whatever Jim asked of him. I really couldn't wait to get out from the caregivers. I think there was more peace and less stress for either of us at the nursing home. I was always stressed with the caregivers at the house and it came off on Jim when I was stressed. It was not a good situation and much better for both of us when he went to the nursing home. That was our situation, but everyone's is different and I know families that have kept their loved ones at home the entire time. There is no right or wrong. It is what everyone is comfortable with. Not only does the LO with Lewy Body have to be comfortable, but also the family or other taking care of that person. It's all what best fits your situation. You need to take care of yourself too. It's very important or you will end up very sick too. Bless you Marcie, we are all in the same boat, it's just what is best for each one's survival. By the way, you are doing the group communicating marvelously. I appreciate hearing from you. Jan Colello San Francisco Bay Area, CA Husband, Jim dx w/Parkinsons in 93 by one doctor and in 96 by his neurologist. In 2000 hallucinations, delusions, and confusion showed up and in 2003 Jim was dx w/LBD by his neurologist Jim deceased, January 22, 2011. From: Ann on <aharrison@... <mailto:aharrison%40ibphoenix.com> <mailto:aharrison%40ibphoenix.com> > Subject: Re: Greetings! To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> Date: Monday, June 6, 2011, 10:50 AM Tania, > We are all quite worried, not to mention fearful, of what lies ahead. We > promised Dad we would never put him into a nursing home. Has anyone else > been able to look after a loved one with LBD at home? If so, I'd be > interested to hear how that went. My Dad stayed at home to the end, as he wanted. However, it took a lot of help and was even more expensive than a nursing home. At first, he had helpers who came in to make meals, shop, clean, etc. When he got confused while he was alone, he had a single button to push to call me. That worked for a year or so. At the end, he needed someone with him all the time and two people for bathing. Even though he was in the same bedroom he'd slept in for 45 years, he often said he wanted to go home. The physical and psychological cost of caring for a demented loved one is enormous. We were lucky that Dad was generally very pleasant and only threatened his caregivers a few times. Others on the list were beaten by their spouse or parent. Often patients accuse their caregivers of stealing and abusing them in other ways. What I'm trying to say is that you should consider your father's wishes, but also consider the impact his care will have on the rest of your family. Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2011 Report Share Posted June 7, 2011 Hi Marcie, I guess I just observed that women are nurturers at heart and very communicative. I am a preschool teacher and it starts out very early with the girls and boys. The girls do all the talking and taking care of the baby dolls. I put it together and saw it at the nursing home. Women like to nurture and at the nursing home everyone wants to feel productive and helpful in some way, so I gave the women something to be helpful with and it helped both Jim and me and it helped them to feel like they were helping us. They are still human and need to feel wanted. I'll bet your mom would like to keep a man company. Most of them just sit there and would enjoy some attention. I gave the women permission to give Jim attention, so they knew they weren't causing any problems with us. " Girls just wanna have fun! " Hahahaha At that point in Jim's life I didn't mind the women around him. I was happy he had a life there, if not a total life, some kind of life. He loved the attention. He was harmless, and couldn't do anything embarrassing with the women. They'd let me know anyway : ) they told me all about him. You hit the nail on the head, be creative and just don't stress with it, let yourself and your mom have some fun. It's not worth an ulcer. It makes the journey so much more bearable. Don't let it beat you down, face it and beat it down. Start sqeezin' those lemons and add some sugar. Just take a dash of what your mom likes to do and you and mix it wit creativity and voila you have a recipe for giving you both a life. You will be so wanted by everyone if you volunteer at the facility. The people enjoy anyone that pays attention to them and gives them some kind of meaning and reason to live. We started out with Black Jack once a week and after awhile it was a huge turn out and they wanted it twice a week! They had to get another volunteer to help with the crowd. We really did have a lot of fun and laughs. And laughing was the best medicine for all. The Activities Director had a snack bar that made money and she paid winners in Black Jack a dime in the beginning, but it grew to be a quarter after awhile and the people saved their quarters. It gave them extra money to spend on outings or at the snack bar : ) You're on the right path, throw away the gloom and doom and make the best out of what you have to work with. In the LBD Links and Files section in " Links " has put an activities catagory, you might find some fun games or things to make that your mom would enjoy. It's a start. Take care, wishing you a more happy journey to you and your mom. And remember, helping just one person makes all the difference in the world. Jan Colello San Francisco Bay Area, CA Husband, Jim dx w/LBD 2003 Deceased, January 22, 2011   From: Ann on <aharrison@... <mailto:aharrison%40ibphoenix.com> <mailto:aharrison%40ibphoenix.com> > Subject: Re: Greetings! To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> Date: Monday, June 6, 2011, 10:50 AM Tania, > We are all quite worried, not to mention fearful, of what lies ahead. We > promised Dad we would never put him into a nursing home. Has anyone else > been able to look after a loved one with LBD at home? If so, I'd be > interested to hear how that went. My Dad stayed at home to the end, as he wanted. However, it took a lot of help and was even more expensive than a nursing home. At first, he had helpers who came in to make meals, shop, clean, etc. When he got confused while he was alone, he had a single button to push to call me. That worked for a year or so. At the end, he needed someone with him all the time and two people for bathing. Even though he was in the same bedroom he'd slept in for 45 years, he often said he wanted to go home. The physical and psychological cost of caring for a demented loved one is enormous. We were lucky that Dad was generally very pleasant and only threatened his caregivers a few times. Others on the list were beaten by their spouse or parent. Often patients accuse their caregivers of stealing and abusing them in other ways. What I'm trying to say is that you should consider your father's wishes, but also consider the impact his care will have on the rest of your family. Best wishes, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 Marcie - you're doing fine responding on this group page also when you get a moment be sure to check out our Links section http://health.groups.yahoo.com/group/LBDcaregivers/links There's lots of useful info on this group page ... Here's a sample of activities I did with my mom - maybe you can get some ideas here: http://health.groups.yahoo.com/group/LBDcaregivers/message/61526 It is empowering when you can discuss issues that you're dealing with and find others 'get it' ... your friends from your regular day to day life may not 'get it' and it's certainly not the same to talk about issues with them. Feel free to post all your questions here - we 'get it' and most of us have been there / done that already and willing to share with you some tricks of the trade.. > > From: Ann on <aharrison@... > <mailto:aharrison%40ibphoenix.com> > <mailto:aharrison%40ibphoenix.com> > > Subject: Re: Greetings! > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > <mailto:LBDcaregivers%40yahoogroups.com> > Date: Monday, June 6, 2011, 10:50 AM > > Tania, > > > We are all quite worried, not to mention fearful, of what lies ahead. We > > promised Dad we would never put him into a nursing home. Has anyone else > > been able to look after a loved one with LBD at home? If so, I'd be > > interested to hear how that went. > > My Dad stayed at home to the end, as he wanted. However, it took a lot > of help and was even more expensive than a nursing home. At first, he > had helpers who came in to make meals, shop, clean, etc. When he got > confused while he was alone, he had a single button to push to call me. > That worked for a year or so. At the end, he needed someone with him > all the time and two people for bathing. Even though he was in the same > bedroom he'd slept in for 45 years, he often said he wanted to go home. > > The physical and psychological cost of caring for a demented loved one > is enormous. We were lucky that Dad was generally very pleasant and > only threatened his caregivers a few times. Others on the list were beaten > by their spouse or parent. Often patients accuse their caregivers of > stealing > and abusing them in other ways. > > What I'm trying to say is that you should consider your father's wishes, > but also consider the impact his care will have on the rest of your family. > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 This is all new to me . My mom has sudden onset dementia and severe arthrits. Easter she was ok, Mother's Day she could barely walk and was very confused. 6/28 we had to take her the hospital,now she's in a nursing home.She's had many tests,no injuries.no infections, no reason!I have no siblings .my daughter does'nt live too near.I have two adult sons in same town .They don't quite understand the huge cost and insurance limits of home care.They havn't even thought of the physical and emotional strain.Because of the arthritis mom can't walk or stand unasssited and because of the dementia she can't communicate very well or understand most things.It's mind boggling how fast this happened.One doctor said she probably had signs for a long time but was able to hide it. If that's true I feel I should have stepped in sooner.In my own defense mom was always  eccentric.Can you always say what's normal and what isn't? My sons seem hellbent on saving grandmas house instead of it going to her care.(i'm seeing a lawyer)They love grandma very much and i understand why they care so much about the house .I wish they knew how torn I am.Every thing happened so fast. ' ________________________________ To: LBDcaregivers Sent: Monday, June 13, 2011 6:39 AM Subject: Re: Marcie/ Greetings!  Marcie - you're doing fine responding on this group page also when you get a moment be sure to check out our Links section http://health.groups.yahoo.com/group/LBDcaregivers/links There's lots of useful info on this group page ... Here's a sample of activities I did with my mom - maybe you can get some ideas here: http://health.groups.yahoo.com/group/LBDcaregivers/message/61526 It is empowering when you can discuss issues that you're dealing with and find others 'get it' ... your friends from your regular day to day life may not 'get it' and it's certainly not the same to talk about issues with them. Feel free to post all your questions here - we 'get it' and most of us have been there / done that already and willing to share with you some tricks of the trade.. > > From: Ann on <aharrison@... > <mailto:aharrison%40ibphoenix.com> > <mailto:aharrison%40ibphoenix.com> > > Subject: Re: Greetings! > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > <mailto:LBDcaregivers%40yahoogroups.com> > Date: Monday, June 6, 2011, 10:50 AM > > Tania, > > > We are all quite worried, not to mention fearful, of what lies ahead. We > > promised Dad we would never put him into a nursing home. Has anyone else > > been able to look after a loved one with LBD at home? If so, I'd be > > interested to hear how that went. > > My Dad stayed at home to the end, as he wanted. However, it took a lot > of help and was even more expensive than a nursing home. At first, he > had helpers who came in to make meals, shop, clean, etc. When he got > confused while he was alone, he had a single button to push to call me. > That worked for a year or so. At the end, he needed someone with him > all the time and two people for bathing. Even though he was in the same > bedroom he'd slept in for 45 years, he often said he wanted to go home. > > The physical and psychological cost of caring for a demented loved one > is enormous. We were lucky that Dad was generally very pleasant and > only threatened his caregivers a few times. Others on the list were beaten > by their spouse or parent. Often patients accuse their caregivers of > stealing > and abusing them in other ways. > > What I'm trying to say is that you should consider your father's wishes, > but also consider the impact his care will have on the rest of your family. > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 Welcome , I'm sort of new here too. My heart goes out to you. My mom had a rapid change in physical and mental status like that two years ago right around mother's day also. The hospital determined her potassium was dangerously low. She was hardly taking any meds back then and all I could figure out is that she stopped drinking so she wouldn't have to pee all the time. It was a scary time. She went down hill so fast in a couple of days my husband had to carry her into the ER. (She spent a while in the hospital and then rehab.) But I believe it's standard in the ER to check potassium levels. All the symptoms coming on so rapidly with everything checking out is a mystery. I think there's still so much they don't know about dementia. LBD seems to be a long, drawn out, terrible disease and if your mom wasn't showing symptoms for so long, that could be a blessing. Maybe her suffering will be less. I understand about the family and financial issues as well. That's a whole other story in my life too. Others have told me that 95% of the time the burden falls on one person. Luckily my Mom made me power of attorney (POA) because we ran out of money paying for all the home care too. I had to sell her home. It was really difficult for different family reasons too - too upsetting to go into here. But it's sold now and I am using the money for her care. Thankfully I learned that " No One has legal rights to a loved one's property when their assets are needed for their care " . A lawyer can help you. I'm sure others in this group can help you more than me. But I understand exactly how you feel. Some days you don't think you can take anymore and feel so alone. This group will be a huge support for you too, especially with everything happening so fast. My prayers are with you. Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Farrell Sent: Monday, June 13, 2011 8:52 AM To: LBDcaregivers Subject: Re: Re: Marcie/ Greetings! This is all new to me . My mom has sudden onset dementia and severe arthrits. Easter she was ok, Mother's Day she could barely walk and was very confused. 6/28 we had to take her the hospital,now she's in a nursing home.She's had many tests,no injuries.no infections, no reason!I have no siblings .my daughter does'nt live too near.I have two adult sons in same town .They don't quite understand the huge cost and insurance limits of home care.They havn't even thought of the physical and emotional strain.Because of the arthritis mom can't walk or stand unasssited and because of the dementia she can't communicate very well or understand most things.It's mind boggling how fast this happened.One doctor said she probably had signs for a long time but was able to hide it. If that's true I feel I should have stepped in sooner.In my own defense mom was always eccentric.Can you always say what's normal and what isn't? My sons seem hellbent on saving grandmas house instead of it going to her care.(i'm seeing a lawyer)They love grandma very much and i understand why they care so much about the house .I wish they knew how torn I am.Every thing happened so fast. ' ________________________________ From: <octoryrose@... <mailto:octoryrose%40yahoo.com> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Sent: Monday, June 13, 2011 6:39 AM Subject: Re: Marcie/ Greetings! Marcie - you're doing fine responding on this group page also when you get a moment be sure to check out our Links section http://health.groups.yahoo.com/group/LBDcaregivers/links There's lots of useful info on this group page ... Here's a sample of activities I did with my mom - maybe you can get some ideas here: http://health.groups.yahoo.com/group/LBDcaregivers/message/61526 It is empowering when you can discuss issues that you're dealing with and find others 'get it' ... your friends from your regular day to day life may not 'get it' and it's certainly not the same to talk about issues with them. Feel free to post all your questions here - we 'get it' and most of us have been there / done that already and willing to share with you some tricks of the trade.. > > From: Ann on <aharrison@... > <mailto:aharrison%40ibphoenix.com> > <mailto:aharrison%40ibphoenix.com> > > Subject: Re: Greetings! > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> > <mailto:LBDcaregivers%40yahoogroups.com> > Date: Monday, June 6, 2011, 10:50 AM > > Tania, > > > We are all quite worried, not to mention fearful, of what lies ahead. We > > promised Dad we would never put him into a nursing home. Has anyone else > > been able to look after a loved one with LBD at home? If so, I'd be > > interested to hear how that went. > > My Dad stayed at home to the end, as he wanted. However, it took a lot > of help and was even more expensive than a nursing home. At first, he > had helpers who came in to make meals, shop, clean, etc. When he got > confused while he was alone, he had a single button to push to call me. > That worked for a year or so. At the end, he needed someone with him > all the time and two people for bathing. Even though he was in the same > bedroom he'd slept in for 45 years, he often said he wanted to go home. > > The physical and psychological cost of caring for a demented loved one > is enormous. We were lucky that Dad was generally very pleasant and > only threatened his caregivers a few times. Others on the list were beaten > by their spouse or parent. Often patients accuse their caregivers of > stealing > and abusing them in other ways. > > What I'm trying to say is that you should consider your father's wishes, > but also consider the impact his care will have on the rest of your family. > > Best wishes, > > Ann > > Quote Link to comment Share on other sites More sharing options...
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