Comments for Multiple Sclerosis Caregiving http://www.mscaregiver.com Doing Your Best Does Make it Better Tue, 31 Jan 2012 12:47:28 +0000 hourly 1 http://wordpress.org/?v= Comment on I’m an MS Caregiver by lee http://www.mscaregiver.com/about/comment-page-2/#comment-405 lee Tue, 31 Jan 2012 12:47:28 +0000 #comment-405 I am so sorry, Kimmie. You obviously need some help, is there any services available for you to get respite care? Talk to your doctor if you have to, go to the county social sevices and see if you might qualify for assistance. Maybe someone here can suggest something. My husband goes thru "spells" where he is just horribe and then he snaps out of it and tells me he knows he couldn't make it without me and that he knows he can be a Real A__hole" I use to say , "I know you don't mean it." Now I say, "yes. you are!" I have made a decision that I will not let him take my mental health and well being away from me and that when I can't deal with it any more he will have to go to a facility. Its different for me though, we haven't been maried as long or have the history that you do. The first time I wrote here I got some amazing and kind words that helped me get through a really bad spell. I hope that you and the other caaregivers here find the same sense of comfort, just knowing you really are not alone. I am so sorry, Kimmie. You obviously need some help, is there any services available for you to get respite care?
Talk to your doctor if you have to, go to the county social sevices and see if you might qualify for assistance. Maybe someone here can suggest something. My husband goes thru “spells” where he is just horribe and then he snaps out of it and tells me he knows he couldn’t make it without me and that he knows he can be a Real A__hole” I use to say , “I know you don’t mean it.” Now I say, “yes. you are!” I have made a decision that I will not let him take my mental health and well being away from me and that when I can’t deal with it any more he will have to go to a facility. Its different for me though, we haven’t been maried as long or have the history that you do.
The first time I wrote here I got some amazing and kind words that helped me get through a really bad spell. I hope that you and the other caaregivers here find the same sense of comfort, just knowing you really are not alone.

]]> Comment on I’m an MS Caregiver by kimmie http://www.mscaregiver.com/about/comment-page-2/#comment-404 kimmie Tue, 31 Jan 2012 00:09:53 +0000 #comment-404 Cheryl, You are not alone! Today has been one of those days, where my husband has pushed every last button he could just to be mean... and I let him get to me, AGAIN! I told him point blank that I hated him and what he has done to my life! He told me the feeling was mutual.. He doesn't even get it.. at this point I am thinking that I am the one not getting it. In 22 years we have had our share of crap, and I am so mad that he gets a free pass on being a dirt bag because he can!! When EVERYTHING falls on me and my mother in law... My kids are 21 & 17 - I can walk away from this hell hole and start a new life, but I couldn't do that to my kids or my mother in law... Before I go into a long winded babbling boo hoo of how bad my life sucks right now, I just want to tell you that you are not alone! Cheryl,

You are not alone! Today has been one of those days, where my husband has pushed every last button he could just to be mean… and I let him get to me, AGAIN! I told him point blank that I hated him and what he has done to my life! He told me the feeling was mutual.. He doesn’t even get it.. at this point I am thinking that I am the one not getting it. In 22 years we have had our share of crap, and I am so mad that he gets a free pass on being a dirt bag because he can!! When EVERYTHING falls on me and my mother in law… My kids are 21 & 17 – I can walk away from this hell hole and start a new life, but I couldn’t do that to my kids or my mother in law… Before I go into a long winded babbling boo hoo of how bad my life sucks right now, I just want to tell you that you are not alone!

]]> Comment on I’m an MS Caregiver by Rick http://www.mscaregiver.com/about/comment-page-2/#comment-403 Rick Mon, 30 Jan 2012 22:44:45 +0000 #comment-403 I think so, Cheryl ... welcome! I think so, Cheryl … welcome!

]]> Comment on I’m an MS Caregiver by Cheryl http://www.mscaregiver.com/about/comment-page-2/#comment-402 Cheryl Mon, 30 Jan 2012 22:23:15 +0000 #comment-402 Sat down at my computer and typed in MS Caregiver and found this page. Alot to read but i did just read Lane's post and felt a bit of relief. Wow, someone else that is going through some of the same things I am. Did I finally find a place where people don't give me the "deer in headlights" expression when I talk about my situation? Cheryl Sat down at my computer and typed in MS Caregiver and found this page. Alot to read but i did just read Lane’s post and felt a bit of relief. Wow, someone else that is going through some of the same things I am. Did I finally find a place where people don’t give me the “deer in headlights” expression when I talk about my situation?

Cheryl

]]> Comment on I’m an MS Caregiver by kimmie http://www.mscaregiver.com/about/comment-page-2/#comment-401 kimmie Tue, 24 Jan 2012 08:48:29 +0000 #comment-401 Thanks Linda! Its one day at a time right now, in the appeals process with SSA & I have to a find him a psychiatrist that specializes in pharmacology because he is on too many pills!! that treated all his symptoms prior to his diagnosis.. Thanks Linda! Its one day at a time right now, in the appeals process with SSA & I have to a find him a psychiatrist that specializes in pharmacology because he is on too many pills!! that treated all his symptoms prior to his diagnosis..

]]> Comment on I’m an MS Caregiver by Linda http://www.mscaregiver.com/about/comment-page-2/#comment-400 Linda Sat, 21 Jan 2012 11:29:20 +0000 #comment-400 Kimmie see down below on Lane's post. Kimmie see down below on Lane’s post.

]]> Comment on I’m an MS Caregiver by Linda http://www.mscaregiver.com/about/comment-page-2/#comment-399 Linda Sat, 21 Jan 2012 11:28:27 +0000 #comment-399 You're not ranting, Lane. :) This is a safe place to let go of some steam. You’re not ranting, Lane. :) This is a safe place to let go of some steam.

]]> Comment on I’m an MS Caregiver by Linda http://www.mscaregiver.com/about/comment-page-2/#comment-398 Linda Sat, 21 Jan 2012 11:27:28 +0000 #comment-398 Dear Kimmie and Lane, First of all welcome to our little blog group. I'm sorry no one on here has acknowledged your posts. Sometimes there is lots of activity on here and then there goes a long period of time where it's quiet. The problems you addressed in your posts are common ones, but something they never bring up at the doctor visits and sometimes not even at support groups. I've been married to my husband 28 years. He was diagnosed in the late eighties, before we had kids. After all these years I'm still trying to come to terms with that he gave up way too early, I'm also trying to forgive him for the mood swings and the “instant jerk” syndrome. I guess what I'm trying to say is you're not the first to experience these things with a spouse who has MS. I'm not sure what the answer is, but I firmly believe that the family needs outside help dealing with these things. I found out recently that my husband's neurologist's office had a family therapist on staff, but it was never offered to us even when I brought up the mood swings to his doctor. I probably sound like a broken record to those who often read this blog, but I can't stress enough the importance of making sure that we as caregivers are getting the emotional support we need and that our kids are. I had no clue the damage my husband was doing to our daughter. When I wasn't home I guess he used her as an emotional punching bag and she never told me. Once I couldn't take care of him anymore, the new issue to deal with was having assistants in our home 24 hours. The lack of privacy was unbearable for my 14 year old daughter. Okay... so my point is... get the help you need NOW to deal with these issues because it doesn't get any better. It gets worse! I really think if we had gotten the help we needed we wouldn't be in the mess we are today. So please please please find a counselor or family therapist to help you, your spouses and your kids through this. And NEVER doubt your sanity!!!! Hugs to both of you! Dear Kimmie and Lane,

First of all welcome to our little blog group. I’m sorry no one on here has acknowledged your posts. Sometimes there is lots of activity on here and then there goes a long period of time where it’s quiet.

The problems you addressed in your posts are common ones, but something they never bring up at the doctor visits and sometimes not even at support groups. I’ve been married to my husband 28 years. He was diagnosed in the late eighties, before we had kids. After all these years I’m still trying to come to terms with that he gave up way too early, I’m also trying to forgive him for the mood swings and the “instant jerk” syndrome. I guess what I’m trying to say is you’re not the first to experience these things with a spouse who has MS.

I’m not sure what the answer is, but I firmly believe that the family needs outside help dealing with these things. I found out recently that my husband’s neurologist’s office had a family therapist on staff, but it was never offered to us even when I brought up the mood swings to his doctor. I probably sound like a broken record to those who often read this blog, but I can’t stress enough the importance of making sure that we as caregivers are getting the emotional support we need and that our kids are. I had no clue the damage my husband was doing to our daughter. When I wasn’t home I guess he used her as an emotional punching bag and she never told me. Once I couldn’t take care of him anymore, the new issue to deal with was having assistants in our home 24 hours. The lack of privacy was unbearable for my 14 year old daughter. Okay… so my point is… get the help you need NOW to deal with these issues because it doesn’t get any better. It gets worse! I really think if we had gotten the help we needed we wouldn’t be in the mess we are today. So please please please find a counselor or family therapist to help you, your spouses and your kids through this. And NEVER doubt your sanity!!!!

Hugs to both of you!

]]> Comment on What’s the Name of My Memory Medicine? by Nancy http://www.mscaregiver.com/whats-the-name-of-my-memory-medicine/comment-page-1/#comment-397 Nancy Sun, 15 Jan 2012 03:10:17 +0000 http://www.mscaregiver.com/?p=331#comment-397 My husband had terrible side affects and had to quit taking it. He had cluster headaches and couldn't listen to TV, slept all the time with the curtains closed and the sheet over his head. He could not sit up in his recliner and had no appitite. He projectile vomited for 3 days with not notice. My husband had terrible side affects and had to quit taking it. He had cluster headaches and couldn’t listen to TV, slept all the time with the curtains closed and the sheet over his head. He could not sit up in his recliner and had no appitite. He projectile vomited for 3 days with not notice.

]]> Comment on I’m an MS Caregiver by Lane http://www.mscaregiver.com/about/comment-page-2/#comment-396 Lane Thu, 12 Jan 2012 21:58:43 +0000 #comment-396 Also, its not like he never leaves the house. We go out to dinner with our friends as a couple, out to eat together, and he has weekly lunches with his family. Just wanted to add that to my rant. Also, its not like he never leaves the house. We go out to dinner with our friends as a couple, out to eat together, and he has weekly lunches with his family. Just wanted to add that to my rant.

]]> Comment on I’m an MS Caregiver by Lane http://www.mscaregiver.com/about/comment-page-2/#comment-395 Lane Thu, 12 Jan 2012 21:57:22 +0000 #comment-395 I have been with my husband for a total of 12 years. We have been married 4 out of those 12. I found out about his diagnosis about 6 months into our relationship. I didn't know a lot about the disease at that time but my world changed that day. It became a blur of conferences, hospital visits, books about MS, etc, etc. When we got married, I understood the commitment I was making to both him and to MS. I understood that there were going to be difficult times, stress and heartbreak. A lot of people tried to talk me out of it but I didn't listen to them. To me my husband wasn't a disease or a burden, he was my husband. He took care of himself, worked out, had a healthy diet and had an overall optimistic attitude. He never let it get him down even during his bad days or during a bad exacerbation. About 3 years ago, he had a relapse and there was extensive disability progression. His neuro didn't think he would be able to walk on his own and he had was in the hospital for a month with intensive physical therapy for a year. During it all, he worked and went about his "normal" routine but I noticed a difference. He no longer had the drive to exercise or do any sort of memory games. He would often say "What's the point?" when I would ask him why he wouldn't the things that he did before. His whole attitude changed. We have been dealing with this change for about 3 years now and it is incredibly frustrating. My husband does not need a cane, walker or wheelchair to get around and he is actually quite independent. He needs help in shaving, cutting meat, buttoning shirts and things that involve dexterity but you would never know that he was mobile with the way he acts sometimes. He complains about walking to the gym at our apartment which is 2 minutes away so I bought him a bike. He complains about the bike, the weights we bought him, the calendars, resistance bands, everything you can think of. It feels like I'm pushing against a brick wall. His doctor even said that for many of his symptoms, simple exercise will help manage tremors and muscle stiffness, so here came yoga. Nope, doesn't want to do it. So in all of this, I have stood with him and I don't ask for anything outrageous. I just ask for him to take care of himself and to let me help him take care of himself by exercising with him but nothing. We have a good support group of friends, who can't really understand what is going on, but who also respect that his disability has progressed and he has aggressive relapsing-remitting. My girlfriends and I like to have the occasional Girls Night and so we'll go out or meet at someone's house. However, my friends no longer come over to my house. My husband will interrupt every conversation, will interrupt whatever movie we are watching, will ask to drive somewhere (he can no longer drive, docs orders which he knows). If I go to someone's house, he gets upset with me and says that I'm abandoning him and my focus should just be on him. I have tried to explain that sometimes I just need to get away and take a breath. I never go out and leave him hungry or cold or anything. He has even spoken to his family about it and they agreed that I was a bad wife who was ignoring him. Am I in the wrong for wanting some time to myself or to want to have friends over to my house? Plus I am starting grad school this semester and I am afraid of what will happen when my free time will disappear. I have been with my husband for a total of 12 years. We have been married 4 out of those 12. I found out about his diagnosis about 6 months into our relationship. I didn’t know a lot about the disease at that time but my world changed that day. It became a blur of conferences, hospital visits, books about MS, etc, etc. When we got married, I understood the commitment I was making to both him and to MS. I understood that there were going to be difficult times, stress and heartbreak. A lot of people tried to talk me out of it but I didn’t listen to them. To me my husband wasn’t a disease or a burden, he was my husband. He took care of himself, worked out, had a healthy diet and had an overall optimistic attitude. He never let it get him down even during his bad days or during a bad exacerbation. About 3 years ago, he had a relapse and there was extensive disability progression. His neuro didn’t think he would be able to walk on his own and he had was in the hospital for a month with intensive physical therapy for a year. During it all, he worked and went about his “normal” routine but I noticed a difference. He no longer had the drive to exercise or do any sort of memory games. He would often say “What’s the point?” when I would ask him why he wouldn’t the things that he did before. His whole attitude changed. We have been dealing with this change for about 3 years now and it is incredibly frustrating. My husband does not need a cane, walker or wheelchair to get around and he is actually quite independent. He needs help in shaving, cutting meat, buttoning shirts and things that involve dexterity but you would never know that he was mobile with the way he acts sometimes. He complains about walking to the gym at our apartment which is 2 minutes away so I bought him a bike. He complains about the bike, the weights we bought him, the calendars, resistance bands, everything you can think of. It feels like I’m pushing against a brick wall. His doctor even said that for many of his symptoms, simple exercise will help manage tremors and muscle stiffness, so here came yoga. Nope, doesn’t want to do it.

So in all of this, I have stood with him and I don’t ask for anything outrageous. I just ask for him to take care of himself and to let me help him take care of himself by exercising with him but nothing. We have a good support group of friends, who can’t really understand what is going on, but who also respect that his disability has progressed and he has aggressive relapsing-remitting. My girlfriends and I like to have the occasional Girls Night and so we’ll go out or meet at someone’s house. However, my friends no longer come over to my house. My husband will interrupt every conversation, will interrupt whatever movie we are watching, will ask to drive somewhere (he can no longer drive, docs orders which he knows). If I go to someone’s house, he gets upset with me and says that I’m abandoning him and my focus should just be on him. I have tried to explain that sometimes I just need to get away and take a breath. I never go out and leave him hungry or cold or anything. He has even spoken to his family about it and they agreed that I was a bad wife who was ignoring him. Am I in the wrong for wanting some time to myself or to want to have friends over to my house? Plus I am starting grad school this semester and I am afraid of what will happen when my free time will disappear.

]]> Comment on The Value of Willful Denial by Greg from Texas http://www.mscaregiver.com/the-value-of-willful-denial/comment-page-1/#comment-394 Greg from Texas Thu, 12 Jan 2012 16:58:33 +0000 http://www.mscaregiver.com/?p=371#comment-394 Thank you for the terrific article! It gives a name to a way of life that I have been learning from my girlfriend since we met 7 months ago. She is 54 years old and has been living with MS for over eight years now. Her first husband divorced her because he could not deal with her condition. She was very forthcoming with me about her condition from our first date. I found her positive attitude toward daily life absolutely fascinating, although somewhat confounding considering the long term prognosis she was facing. She is the most kind, loving, and caring person I have ever met. She has a great sense of humor. I have never been happier in my life, and have never felt more like I am where God would want me to be. We are now living together on a ranch in Texas. We spend most days tending to the cattle, riding horses, fishing, bird watching, and just generally enjoying life in the country. Every day is a blessing in its own way. Her condition is progressing. Her eyesight is failing, and her legs are getting weaker. About twice a month, her legs go out completely, and she is in terrible pain for a day or two. Twice now she has lost all muscle control including speech. I know very little about MS, and don’t always understand her symptoms. I do feel overwhelmed and inadequate to handle the situations at times, but together, I have faith we can deal with whatever comes. We are preparing for the inevitable, but the temporary “willful denial” allows us to live every good day to the fullest. We know what is coming, but refuse to allow it to rob us of the present. It is possible to prepare without worry, and accept without fear. Thank you for the terrific article! It gives a name to a way of life that I have been learning from my girlfriend since we met 7 months ago. She is 54 years old and has been living with MS for over eight years now. Her first husband divorced her because he could not deal with her condition. She was very forthcoming with me about her condition from our first date. I found her positive attitude toward daily life absolutely fascinating, although somewhat confounding considering the long term prognosis she was facing. She is the most kind, loving, and caring person I have ever met. She has a great sense of humor. I have never been happier in my life, and have never felt more like I am where God would want me to be. We are now living together on a ranch in Texas. We spend most days tending to the cattle, riding horses, fishing, bird watching, and just generally enjoying life in the country. Every day is a blessing in its own way.

Her condition is progressing. Her eyesight is failing, and her legs are getting weaker. About twice a month, her legs go out completely, and she is in terrible pain for a day or two. Twice now she has lost all muscle control including speech. I know very little about MS, and don’t always understand her symptoms. I do feel overwhelmed and inadequate to handle the situations at times, but together, I have faith we can deal with whatever comes. We are preparing for the inevitable, but the temporary “willful denial” allows us to live every good day to the fullest. We know what is coming, but refuse to allow it to rob us of the present. It is possible to prepare without worry, and accept without fear.

]]> Comment on Finding Caregiver Support by Donna http://www.mscaregiver.com/finding-caregiver-support/comment-page-1/#comment-391 Donna Sat, 07 Jan 2012 18:23:00 +0000 http://www.mscaregiver.com/?p=189#comment-391 No but I have a nursing background and looked it up. Unfortunately, the news is not good. IT's a fast progressing bed sore that goes from a small spot to a large crevice in hours. There is no treatment that I could find and in the elderly, it has been found to be terminal. It has been noted to occur in MS patients but I've nver seen it in any of the literature. http://www.kennedyterminalulcer.com is where I found the information. I hope your loved one does not have it. MS Caregiver Donna No but I have a nursing background and looked it up. Unfortunately, the news is not good. IT’s a fast progressing bed sore that goes from a small spot to a large crevice in hours. There is no treatment that I could find and in the elderly, it has been found to be terminal. It has been noted to occur in MS patients but I’ve nver seen it in any of the literature. http://www.kennedyterminalulcer.com is where I found the information. I hope your loved one does not have it.

MS Caregiver Donna

]]> Comment on Finding Caregiver Support by Judy http://www.mscaregiver.com/finding-caregiver-support/comment-page-1/#comment-390 Judy Sat, 07 Jan 2012 00:04:46 +0000 http://www.mscaregiver.com/?p=189#comment-390 Has anyone with M.S. had a Kennedy Ulcer? Has anyone with M.S. had a Kennedy Ulcer?

]]> Comment on I’m an MS Caregiver by kimmie http://www.mscaregiver.com/about/comment-page-2/#comment-389 kimmie Thu, 05 Jan 2012 22:31:23 +0000 #comment-389 I actually stumbled upon this website by accident, I am very glad I did. My husband 43, was diagnosed in July of 2011 with MS, after we were told he had brain tumors. After 3 days of crying because we thought it was a death sentence we were informed that it was MS and not cancer. We were so relieved it wasn't the big C word, and he wasn't going to die, its only MS! Yeah well MS has completely turned our world upside down in 5 short months! It's been a hell ride that neither my kids, our families' nor myself saw coming! Honestly, I am not sure what is worse, the grieving process that goes with losing a spouse or parent or the ongoing grieving process of watching our lives crumble before our eyes and still grieving the man that used to live in his body? He has 4 lesions on the frontal lobe, 1 on his brain stem and one on his spinal cord, apparently the MS had gone undiagnosed for almost 8 years so its pretty progressed, hence the instant cognitive, personality warping, mental changes that have occurred with him in the past 2 years. I honestly have thought I was nuts and off my tree because one minute life is good and in a flash he morphs into a complete jerk that we don't know! Before he was diagnosed we (me, kids and our families) thought he was using drugs, because of the complete lack of decision making, slurring, staggering and small accidents he had. WE were so wrong!! It was the MS eating away at his brain like termites! After reading all the comments about the personality changes I don't feel so alone. I probably have not handled this whole situation as well as I could have, I let him push my buttons when he runs his mouth and an hour later he is has forgotten about it and I am still FUMING! The last few years have been difficult for us, dealing with a boat load crap that got tossed our way and the straw that almost broke this camel's back was the MS diagnosis. But this camel will persevere for yet another day. I found this board searching for "MS effects on families" because I am in the process of assisting our 17 years old son who is a Sr. in High School apply for the MS Society scholarship. He has to submit an essay regarding "how MS has affected my life" and we both know how it has affected our lives but putting pen to paper has proven difficult. I actually stumbled upon this website by accident, I am very glad I did. My husband 43, was diagnosed in July of 2011 with MS, after we were told he had brain tumors. After 3 days of crying because we thought it was a death sentence we were informed that it was MS and not cancer. We were so relieved it wasn’t the big C word, and he wasn’t going to die, its only MS! Yeah well MS has completely turned our world upside down in 5 short months! It’s been a hell ride that neither my kids, our families’ nor myself saw coming! Honestly, I am not sure what is worse, the grieving process that goes with losing a spouse or parent or the ongoing grieving process of watching our lives crumble before our eyes and still grieving the man that used to live in his body? He has 4 lesions on the frontal lobe, 1 on his brain stem and one on his spinal cord, apparently the MS had gone undiagnosed for almost 8 years so its pretty progressed, hence the instant cognitive, personality warping, mental changes that have occurred with him in the past 2 years. I honestly have thought I was nuts and off my tree because one minute life is good and in a flash he morphs into a complete jerk that we don’t know! Before he was diagnosed we (me, kids and our families) thought he was using drugs, because of the complete lack of decision making, slurring, staggering and small accidents he had. WE were so wrong!! It was the MS eating away at his brain like termites!

After reading all the comments about the personality changes I don’t feel so alone. I probably have not handled this whole situation as well as I could have, I let him push my buttons when he runs his mouth and an hour later he is has forgotten about it and I am still FUMING! The last few years have been difficult for us, dealing with a boat load crap that got tossed our way and the straw that almost broke this camel’s back was the MS diagnosis. But this camel will persevere for yet another day.

I found this board searching for “MS effects on families” because I am in the process of assisting our 17 years old son who is a Sr. in High School apply for the MS Society scholarship. He has to submit an essay regarding “how MS has affected my life” and we both know how it has affected our lives but putting pen to paper has proven difficult.

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