Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Judy I know how hard it is. My therapist Told me to be a joiner. So I did join Our local community center. When I Am there I can almost forget my Sweet DH. But alas, home alone The guilt and missing him start over. Just do what you can to keep your sanity. Jeanne Sent from my iPhone > Hi group > > I have become more active on the site most recently as my mom has taken such a rapid decline into lewy land! > > I would like to bring up something I have been experiencing that I wondered if others in the group could relate to! > > That is the intense loneliness my brother and I have in dealing with LBD - as u may notice from my signature below I am a trained social worker and thus have experienced working with people caring for I'll Los - ofcourse when it is your own journey - all the skills in the world are deduced to zero > > However, with other diseases such as cancers and alzheimers there seems to be so much more compassion and understanding from other people most probably since those ailments are more well known! > > Most of moms friends and neighbors have stopped visiting a long time ago - my friends even have little patience and are dumbfounded by LBD - my parents were both only children so my bro and I have no aunts uncles or cousins ! Even my loving husband seems more comfortable not seeing my mom anymore as her decline is heartbreaking - especially with her unresponsiveness and no recognition of her family any longer! > > I see my own therapist from time to time - talk with my bro - and my kids - only 1 lives near mom- but as young people are although heartbroken for what their grandma has become they have little tolerance for the " ugly " slide downward we are seeing!! > > Sorry for rambling on here - but i need a place to vent since only you in this group who have walked in my Shoes are truly understanding of how isolating the caregiving process becomes with LBD- > > so from time to time forgive me if I just say " life stinks " and where r our supposed " friends " now when we need them so badly? > > We are jewish and I was thinking of even joining a reform synagogue just to have weekly community prayers - I have not been to one now in almost 20 yrs - > > Any other ideas aside from joining an in person LBD group? > > Thanks, > > Judy > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Jeane- I like that word - joiner - something I'm not naturally! Thanks for your response - it's always good to know I'm not the only one- also makes me feel that my instinct to join a community group is good !! Otherwise I find most days that I'm not working I spend on my bed or on the sofa - even tv or books can't keep my attention !! I feel like running away!!! Jeane- keeping my sanity has truly become an effort!! My cell is below and I would welcome Any calls !! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Judy > I know how hard it is. My therapist > Told me to be a joiner. So I did join > Our local community center. When I > Am there I can almost forget my > Sweet DH. But alas, home alone > The guilt and missing him start over. > Just do what you can to keep your > sanity. > > Jeanne > > Sent from my iPhone > > > > > Hi group > > > > I have become more active on the site most recently as my mom has taken such a rapid decline into lewy land! > > > > I would like to bring up something I have been experiencing that I wondered if others in the group could relate to! > > > > That is the intense loneliness my brother and I have in dealing with LBD - as u may notice from my signature below I am a trained social worker and thus have experienced working with people caring for I'll Los - ofcourse when it is your own journey - all the skills in the world are deduced to zero > > > > However, with other diseases such as cancers and alzheimers there seems to be so much more compassion and understanding from other people most probably since those ailments are more well known! > > > > Most of moms friends and neighbors have stopped visiting a long time ago - my friends even have little patience and are dumbfounded by LBD - my parents were both only children so my bro and I have no aunts uncles or cousins ! Even my loving husband seems more comfortable not seeing my mom anymore as her decline is heartbreaking - especially with her unresponsiveness and no recognition of her family any longer! > > > > I see my own therapist from time to time - talk with my bro - and my kids - only 1 lives near mom- but as young people are although heartbroken for what their grandma has become they have little tolerance for the " ugly " slide downward we are seeing!! > > > > Sorry for rambling on here - but i need a place to vent since only you in this group who have walked in my Shoes are truly understanding of how isolating the caregiving process becomes with LBD- > > > > so from time to time forgive me if I just say " life stinks " and where r our supposed " friends " now when we need them so badly? > > > > We are jewish and I was thinking of even joining a reform synagogue just to have weekly community prayers - I have not been to one now in almost 20 yrs - > > > > Any other ideas aside from joining an in person LBD group? > > > > Thanks, > > > > Judy > > > > Judy R. Strauss LMSW PhD > > > > Lead Faculty > > University of Phoenix > > > > Jersey City Campus > > 100 Town Square Place > > |Jersey City, NJ 07310 > > Cell- > > Email- Jrstr@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 This is a universal problem for people doing caregiving, no matter what the illness. I tried a few support groups here but it was so hard just to get to them and getting their each time was even more difficult. Many times when people grieve heavily and feel they can't get out of it they can find some relieve by volunteering. I decided to find something positive to do - volunteer doing something that will have a positive outcome. I did some hours for the read to children program at the library that was really rewarding and also I did some hours with adult literacy programs which I also enjoyed very much. Unfortunately those programs got cut way back this year. I really love animals and wondered what I could do with them. There's a group here that is called PAWS (Pets are wonderful support) who helps people with AIDS and Cancer keep their pets, provide food, medical care, exercise etc. so the pets can be happy in the home with the person who is ill. I could drive and take supplies to people, visit and walk their dogs or clean their litter box and so on and that was ok the problem with all of those was I was away too much and needed to be home. So I decided to see about fostering rescue dogs, one or two a a time, and see how that went. I figured it would have a positive outcome and I would be able to be around in case the part time caregiver needed help troubleshooting with my mil and her issues. This is something that' s worked out very well. I did one on my own and that then found a rescue I liked and signed up to be a foster home with them. They cover the food and vet care needed, spay/neuter, shots. I stipulate I want a dog that gets along with cats and elderly. I have the dog for about a month or two, show it to people who are interested in adopting and when they go to a new, carefully screened family to live with it feels very rewarding. To me it's a big boost in positive energy. The dogs have been great for my mil also. Sometimes they need medicine for a respiratory infection, sometimes they need a little etc tlc. Always they need love and play. I had felt so isolated and so depressed. Many nights I sat up listening to my mil yelling help me and not able to sleep. When she started spitting out food like a baby that was the straw. I had to do something or I was going to lose it. ing a rescued animal was something I could do and still be here at home and it would have a very positive outcome. So far I have fostered 5 dogs this year and 3 adopted. One will be adopted next week and another one I hope tomorrow. The love and joy these dogs have to be out of the shelter is also inspiring. I have found it very hard to feel sad with a dog licking my face or running around with a squeaky toy. I thought about volunteering at the shelter but it some would die, not a happy ending. I needed something with a happy ending. I have met some caring people and surprisingly some who are also caregiving for their loved one(s) and keep their sanity by rescuing a dog or cat or even a litter of pups or kittens. One woman takes kittens that need to be bottle fed - that's her specialty. She said it really got her out of feeling depressed about her mother's decline and her mother likes to " help " as well. I hope you find something that will help. I sure understand how hard it is with this constant grieving day after day. Hugs, Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Sent: Saturday, August 20, 2011 10:38 AMb To: LBDcaregivers Subject: Loneliness Hi group I have become more active on the site most recently as my mom has taken such a rapid decline into lewy land! I would like to bring up something I have been experiencing that I wondered if others in the group could relate to! That is the intense loneliness my brother and I have in dealing with LBD - as u may notice from my signature below I am a trained social worker and thus have experienced working with people caring for I'll Los - ofcourse when it is your own journey - all the skills in the world are deduced to zero However, with other diseases such as cancers and alzheimers there seems to be so much more compassion and understanding from other people most probably since those ailments are more well known! Most of moms friends and neighbors have stopped visiting a long time ago - my friends even have little patience and are dumbfounded by LBD - my parents were both only children so my bro and I have no aunts uncles or cousins ! Even my loving husband seems more comfortable not seeing my mom anymore as her decline is heartbreaking - especially with her unresponsiveness and no recognition of her family any longer! I see my own therapist from time to time - talk with my bro - and my kids - only 1 lives near mom- but as young people are although heartbroken for what their grandma has become they have little tolerance for the " ugly " slide downward we are seeing!! Sorry for rambling on here - but i need a place to vent since only you in this group who have walked in my Shoes are truly understanding of how isolating the caregiving process becomes with LBD- so from time to time forgive me if I just say " life stinks " and where r our supposed " friends " now when we need them so badly? We are jewish and I was thinking of even joining a reform synagogue just to have weekly community prayers - I have not been to one now in almost 20 yrs - Any other ideas aside from joining an in person LBD group? Thanks, Judy Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> __________ Information from ESET Smart Security, version of virus signature database 6396 (20110820) __________ The message was checked by ESET Smart Security. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 What a beautiful post. I'm so glad you are sharing such an important suggestion for helping caregivers stay sane. Thanks Dorothy RE: Loneliness This is a universal problem for people doing caregiving, no matter what the illness. I tried a few support groups here but it was so hard just to get to them and getting their each time was even more difficult. Many times when people grieve heavily and feel they can't get out of it they can find some relieve by volunteering. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Hi Dorothy The idea of volunteering is a good one ! There is also lots of research out now that volunteer work increases life expectancy as well as the quality of their life! My teaching is one of the few things that helps! Especially since I teach online and also at a campus i touch over 150 lives of Students a year ! since the $ is not great I often look at my work as service! The comments you made about the nights hit me the most - also when I wake up in the morning I always have a pit in my stomach! Ot takes me a minute to remember that the LBD that has taken away my mom is real and not a bad dream! Thanks for the thoughts - Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > This is a universal problem for people doing caregiving, no matter what the > illness. I tried a few support groups here but it was so hard just to get > to them and getting their each time was even more difficult. Many times > when people grieve heavily and feel they can't get out of it they can find > some relieve by volunteering. I decided to find something positive to do > - volunteer doing something that will have a positive outcome. I did some > hours for the read to children program at the library that was really > rewarding and also I did some hours with adult literacy programs which I > also enjoyed very much. Unfortunately those programs got cut way back this > year. I really love animals and wondered what I could do with them. > There's a group here that is called PAWS (Pets are wonderful support) who > helps people with AIDS and Cancer keep their pets, provide food, medical > care, exercise etc. so the pets can be happy in the home with the person who > is ill. I could drive and take supplies to people, visit and walk their > dogs or clean their litter box and so on and that was ok the problem with > all of those was I was away too much and needed to be home. So I decided > to see about fostering rescue dogs, one or two a a time, and see how that > went. I figured it would have a positive outcome and I would be able to be > around in case the part time caregiver needed help troubleshooting with my > mil and her issues. This is something that' s worked out very well. > > I did one on my own and that then found a rescue I liked and signed up to be > a foster home with them. They cover the food and vet care needed, > spay/neuter, shots. I stipulate I want a dog that gets along with cats and > elderly. I have the dog for about a month or two, show it to people who are > interested in adopting and when they go to a new, carefully screened family > to live with it feels very rewarding. To me it's a big boost in positive > energy. The dogs have been great for my mil also. Sometimes they need > medicine for a respiratory infection, sometimes they need a little etc tlc. > Always they need love and play. > > I had felt so isolated and so depressed. Many nights I sat up listening to > my mil yelling help me and not able to sleep. When she started spitting out > food like a baby that was the straw. I had to do something or I was going > to lose it. ing a rescued animal was something I could do and still > be here at home and it would have a very positive outcome. > > So far I have fostered 5 dogs this year and 3 adopted. One will be adopted > next week and another one I hope tomorrow. The love and joy these dogs have > to be out of the shelter is also inspiring. I have found it very hard to > feel sad with a dog licking my face or running around with a squeaky toy. > > I thought about volunteering at the shelter but it some would die, not a > happy ending. I needed something with a happy ending. I have met some > caring people and surprisingly some who are also caregiving for their loved > one(s) and keep their sanity by rescuing a dog or cat or even a litter of > pups or kittens. One woman takes kittens that need to be bottle fed - > that's her specialty. She said it really got her out of feeling depressed > about her mother's decline and her mother likes to " help " as well. > > I hope you find something that will help. I sure understand how hard it is > with this constant grieving day after day. > > Hugs, > > Dorothy > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy > Sent: Saturday, August 20, 2011 10:38 AMb > To: LBDcaregivers > Subject: Loneliness > > Hi group > > I have become more active on the site most recently as my mom has taken such > a rapid decline into lewy land! > > I would like to bring up something I have been experiencing that I wondered > if others in the group could relate to! > > That is the intense loneliness my brother and I have in dealing with LBD - > as u may notice from my signature below I am a trained social worker and > thus have experienced working with people caring for I'll Los - ofcourse > when it is your own journey - all the skills in the world are deduced to > zero > > However, with other diseases such as cancers and alzheimers there seems to > be so much more compassion and understanding from other people most probably > since those ailments are more well known! > > Most of moms friends and neighbors have stopped visiting a long time ago - > my friends even have little patience and are dumbfounded by LBD - my parents > were both only children so my bro and I have no aunts uncles or cousins ! > Even my loving husband seems more comfortable not seeing my mom anymore as > her decline is heartbreaking - especially with her unresponsiveness and no > recognition of her family any longer! > > I see my own therapist from time to time - talk with my bro - and my kids - > only 1 lives near mom- but as young people are although heartbroken for what > their grandma has become they have little tolerance for the " ugly " slide > downward we are seeing!! > > Sorry for rambling on here - but i need a place to vent since only you in > this group who have walked in my Shoes are truly understanding of how > isolating the caregiving process becomes with LBD- > > so from time to time forgive me if I just say " life stinks " and where r > our supposed " friends " now when we need them so badly? > > We are jewish and I was thinking of even joining a reform synagogue just to > have weekly community prayers - I have not been to one now in almost 20 yrs > - > > Any other ideas aside from joining an in person LBD group? > > Thanks, > > Judy > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> > > __________ Information from ESET Smart Security, version of virus signature > database 6396 (20110820) __________ > > The message was checked by ESET Smart Security. > > http://www.eset.com > > Quote Link to comment Share on other sites More sharing options...
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