Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 In a message dated 10/22/2005 8:19:45 PM Central Daylight Time, kristen@... writes: It was interesting to see that those of our group who have SMA (and posted a response) are positive about having your spouse as your primary caregiver. My husband of 8 years is a 35 year old man with SMA. I am his primary care giver and I honestly don't think he would respond as positively to the question, " Does your spouse mind being your PCA? " There are days that I KNOW if I was a paid employee, he would fire me, no questions asked. Am I really the only person who sometimes resents being my spouse's primary caregiver? Yeah, I knew when I agreed to marry him that was severely disabled; I knew that life with him would be hard and I knew I may lose him someday. However, I don't think I had any clue how hard it would truly be. Most days, things are status quo and I don't even think of as disabled. Other days I really wonder what life would be like with an ablebodied spouse. Those of you out there, especially those of you who are married and have kids (we have 3 y.o. twins), please respond! What is life like for you? Any other wives or husbands that can relate to my situation?? Being one person who has recently been going through PA hell, I felt a compelling urge to reply. Steve and I just celebrated our 7th wedding anniversary, and for all those years he has been my primary caretaker. I have worked with numerous PAs in the past, however I have never felt comfortable enough with any one of them to have them provide ALL of my care, including things like cleaning/changing my trach, etc. Does he mind it, does it bother him? Sometimes yes! Nevertheless, he also knows that I often hate asking for help and would much rather do things for myself, if possible. Life most people, SMA is something I have grown to accept and live with, but there are aspects which I will never like. In addition to ourselves, we have two young daughters, two dogs, a rabbit, a guinea pig, and four fish. We own a home, and I, up until about ten days ago, had a PA coming in to help with a variety of things within our household. However, she suddenly left her job with me without providing much explanation, and I am at a point now where I have had enough with outside help, have very little faith and trust which is crucial to working with old or new PAs, and feel it is best to have my hubby once again be my primary caretaker. Unfortunately, he cannot get paid to do so where we live, so we are looking to relocate in the near future since we cannot survive without him bringing in an income. Pros and cons about him becoming my PA...he's more reliable than any PA I have ever had, he'll show up for work when he's sick, he gets stuff done right the first time around, he won't break my girls' hearts by simply stop showing for work after holding the position for a year or more, and yet I'll be far more lenient with him than others because he's my husband. I will still hire other help on a part-time basis to give us both a break, but he will be doing the bulk of my care and we both agree this will be best for our family. I think the biggest factor we often remind ourselves of regularly is that I didn't ask for this and, if given a choice in the beginning of my life, I would have passed on being so severely disabled. Now we are both committed to making the best of our situations and will do everything we can to make our lives the best for our kids. Amy M. Marquez Spinal Muscular Atrophy (SMA) - Type 1 Wife to Steve - Married October 17, 1998 Mom to le Coral - Born July 19, 1999 Mom to Harley Jasmine - Born March 9, 2004 Colette - Retired Deceased Service Dog Ella - Retired Service Dog Loved Family Pets - Scout, the Horse of a Golden; Nala, the Lovable Lab; Dusty, the Snow-Gray Dwarf Bunny; Angel, the Angelic-White Guinea Pig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 Well, I will ask my hubby what his thoughts are and get back to you later. All I know is, for me and based on my personal experience, my husband wouldn't or couldn't picture himself with any other woman, let alone an able bodied one. Unless he just says this to keep him out of the " dog house " then I got no reason to doubt his sincerity. I suppose my parents were too supportative. They felt we should have a long engagement to assure my fella and myself that we knew what we were heading for. He was allowed to dress me, wash me (no body baths, but armpits) including my hair plus he was allowed under a watchful eye to put me on the bedpan. Yes he knew just how stinky and messy I can be, LOL. He ordained himself as a PPP (Perfect Pad Placementman) as he actually changed my period pads .... just how many other marriages (not SMA ones) have a husband that would do that, hm? So when I ask hubby, I will post later what he says. Angie On 2005.10.22 21:18, Tweed wrote: > Hi everyone...I've been away from the group for a while. We moved > during the summer and I am finally just getting my internet stuff > updated. I read the posts about having your spouse as your primary > caregiver and I just had to respond. It was interesting to see that > those of our group who have SMA (and posted a response) are positive > about having your spouse as your primary caregiver. > > My husband of 8 years is a 35 year old man with SMA. I am his > primary care giver and I honestly don't think he would respond as > positively to the question, " Does your spouse mind being your PCA? " > There are days that I KNOW if I was a paid employee, he would fire > me, no questions asked. > > Am I really the only person who sometimes resents being my spouse's > primary caregiver? Yeah, I knew when I agreed to marry him that > was severely disabled; I knew that life with him would be hard > and I knew I may lose him someday. However, I don't think I had any > clue how hard it would truly be. Most days, things are status quo > and I don't even think of as disabled. Other days I really > wonder what life would be like with an ablebodied spouse. > > Those of you out there, especially those of you who are married and > have kids (we have 3 y.o. twins), please respond! What is life like > for you? Any other wives or husbands that can relate to my > situation?? > > > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 In a message dated 10/22/2005 9:19:45 PM Eastern Standard Time, kristen@... writes: Am I really the only person who sometimes resents being my spouse's Primary caregiver? Yeah, I knew when I agreed to marry him that was severely disabled; I knew that life with him would be hard And I knew I may lose him someday. However, I don't think I had any Clue how hard it would truly be. Most days, things are status quo And I don't even think of as disabled. Other days I really Wonder what life would be like with an able-bodied spouse. Those of you out there, especially those of you who are married and have kids (we have 3 y.o. twins), please respond! What is life like for you? Any other wives or husbands that can relate to my situation?? Well, now Amy and I have been together for 10 years married for 8. We met when we were 16. We have basically grown up together. We have and lots of experiences good and bad. The biggest change in our relationship was when we had our daughter, Olivia two years ago. I am the abled bodied part of our relationship. I do everything and I love it. And when I mean I do everything from bath and makeup to yard work and cooking. We don't have anyone to help and I wouldn't like it any other way. I am a husband, a dad and a jack of all trades. Some things I do good and some things I'm not too good at. Some days are good and some days are bad. That's life though. But I don't resent anything, not for one minute. Actually I feel blessed. My biggest concern now is Amy getting through this pregnancy okay.(35 days left!) I knew what I was getting into when I met Amy. We both knew what were getting ourselves into when I started doing stuff for her. We also knew what it was going to be like when we found out she was pregnant. I don't know what to say to you in regard to you being resentful of your position in life. You both knew what it was going to be like. Also a few weeks ago the question was posted about the magic pill. I never said it, but I wouldn't take Amy another way. No way no how! Will Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 In a message dated 10/23/2005 8:10:37 PM Eastern Daylight Time, KingIbexx@... writes: I am the abled bodied part of our relationship. I do everything and I love it. Will- Your post gave me CHILLS! Thanks for your honesty! My 20 year old daughter just married a 22 year old man with SMA-2. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 , As I read these posts, I am amazed and in awe at all of you spouses being the primary caregivers. I have SMA and I have never married. I can't imagine any man taking care of me. It's not that I didn't desire marriage. I did more than anything in the world. Unfortunately, it didn't happen for me. It really takes a very special person and , you're one of them. I also feel that you're very honest in admitting that sometimes it's very difficult. I'm sure that it can be overwhelming and tiring. You are human. You probably need a break now and then. Doesn't everyone? Personally, I think your husband needs a health aide, at least a few hours a day. No one should be a 24-hour caregiver. It's not fair to you. I know you love your husband and that's wonderful, but everyone needs some time off. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 In a message dated 10/23/2005 9:21:19 PM Eastern Standard Time, Aunt617@... writes: No one should be a 24-hour caregiver. It's not fair to you. I know you love your husband and that's wonderful, but everyone needs some time off. And no one should assume it's only the care giver that " needs a break " sometimes. It works for us 99.9% of the time and I know neither of us could/want to picture our lives differently. Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 - she's two! http://www.babiesonline.com/babies/o/oliviathegreat/ A new addition to arrive November 28th, 2005- it's a boy! http://babiesonline.com/babies/m/mama20305/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 In a message dated 10/23/2005 8:28:54 PM Central Daylight Time, blueyedaze@... writes: And no one should assume it's only the care giver that " needs a break " sometimes. It works for us 99.9% of the time and I know neither of us could/want to picture our lives differently. I will admit, having your spouse as your primary/only caretaker really sucks when the two of you are fighting, but it also makes for very short-lived arguments. I'm trying to get my hubby to post his feelings on this topic, but his initial reaction was " what human being doesn't picture him/herself with another person at some point in time? " Yes, he's a pervert!!! ;-)~~ Seriously, though, I think Amy brings up a great point...having another person to lend a hand even for a couple hours a week can benefit both to a great extent, but that doesn't mean we'd change our primary caretaker if given the opportunity. Amy M. Marquez Spinal Muscular Atrophy (SMA) - Type 1 Wife to Steve - Married October 17, 1998 Mom to le Coral - Born July 19, 1999 Mom to Harley Jasmine - Born March 9, 2004 Colette - Retired Deceased Service Dog Ella - Retired Service Dog Loved Family Pets - Scout, the Horse of a Golden; Nala, the Lovable Lab; Dusty, the Snow-Gray Dwarf Bunny; Angel, the Angelic-White Guinea Pig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 I'm sure there are times my husband gets totally fed up with taking care of me *and* everyone else in the family. The biggest thing that seems to drive him crazy is when I'm worried or depressed because *I'm* thinking how much better he'd be off with an ablebodied wife. I feel bad because *I* never knew just how hard it'd be on him. I used to be a lot more healthy, independent and upbeat. Several life-or-death kind of medical emergencies made me more cynical and hopeless. Psychologically I'm a lot different than I was 14+ years ago. But I'll ask him to see if he'll write up some sort of response... Oh, and, , I'm glad you are back online! Jenn Tweed wrote: >Those of you out there, especially those of you who are married and >have kids (we have 3 y.o. twins), please respond! What is life like >for you? Any other wives or husbands that can relate to my >situation?? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 In a message dated 10/23/2005 10:33:47 PM Eastern Standard Time, Ames24@... writes: I will admit, having your spouse as your primary/only caretaker really sucks when the two of you are fighting, but it also makes for very short-lived arguments. I'm trying to get my hubby to post his feelings on this topic, but his initial reaction was " what human being doesn't picture him/herself with another person at some point in time? " Yes, he's a pervert!!! ;-)~~ Seriously, though, I think Amy brings up a great point...having another person to lend a hand even for a couple hours a week can benefit both to a great extent, but that doesn't mean we'd change our primary caretaker if given the opportunity. Exactly - that was my .1%. Heh. Amy Wife to Will 11/3/95 Mama to Olivia Isabelle 9/18/03 - she's two! http://www.babiesonline.com/babies/o/oliviathegreat/ A new addition to arrive November 28th, 2005- it's a boy! http://babiesonline.com/babies/m/mama20305/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 I was certainly Vickie's primary care giver for the last ten years. The only time we were ever apart was back in '95 during our first six months married when I went out of town for two nights. That wouldn't have been possible in the most recent five years or so as she could not tolerate the pain of her aide using the Hoyer lift to put her in her chair, nor could she ever get seated comfortably. I lifted her and placed her in the chair or bed, etc. each time. Her aide would get her dressed perhaps four days a week, but would not lift her. During our first years together, I remember thinking that I needed a break, but that feeling went away after a maybe 3 or 4 years, and I never felt the need again. Taking care of her and all of her needs, including turning her throughout each night was no different than taking care of myself - well, that's not exactly true - I didn't feel that sense of love taking care of myself. I mean, good-grief, how many AB guys married to AB females get to pick them up and hold them in their arms several times each and every day. I was married to AB women for 24 years before and never got to do that! Vickie got her first aide (actually the only aide we ever had) only one year before we met. This was after her first husband died at age 39. He was her sole caregiver for 8 or 9 years before that. Before her marriage, it was only members of her family - parents, or one or another of two sisters, and rarely their husbands. I broke my shoulder back in '96 and for a couple of months her 16 year old niece had to help me with the lift, then it was almost six months before I could actually pick her up in my arms again - damn shoulder took a year in all to heal. Because of her pain, I did began to worry in the last year or so about what would happen when I got too old to lift her comfortably. I also did all lifting at doctor's appointments, hospitals, dentists, etc., - x-ray tables, CTs, surgical tables - she wouldn't have procedures without me present - not my choice - hers - actually both my AB wives were also like that! - go figure! Bob C Manning Jr PO Box 1248 Decatur GA 30031-1248 404 728-8297 home 404 725-1842 cell residence: 2205 N Crossing Way Decatur GA 30033-4175 work email: rmanning@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Okay, i asked Doug, my husband, if he had any concerns, complaints, woes or annoyances being my primary care giver. The one thing he truly hates doing is wiping up after I do a bad dump (diaherrea). It just takes longer to clean me up. Oh and he also says he hates it when I approach him in a cutesy way to ask for help. He rather me just to spit it out, he will do it, no worries there. He doesn't want me to be huffing and puffing or uncomfy if he can help. All I gotta do is be direct and ask. Otherwise, he said he has no problems taking care of me. (No doghouse for him eh?) Angie On 2005.10.23 20:09, KingIbexx@... wrote: > In a message dated 10/22/2005 9:19:45 PM Eastern Standard Time, > kristen@... writes: > > Am I really the only person who sometimes resents being my spouse's > Primary caregiver? Yeah, I knew when I agreed to marry him that > was severely disabled; I knew that life with him would be hard > And I knew I may lose him someday. However, I don't think I had any > Clue how hard it would truly be. Most days, things are status quo > And I don't even think of as disabled. Other days I really > Wonder what life would be like with an able-bodied spouse. > > Those of you out there, especially those of you who are married and > have kids (we have 3 y.o. twins), please respond! What is life like > for you? Any other wives or husbands that can relate to my > situation?? > > > > > > > Well, now Amy and I have been together for 10 years married for 8. We met > when we were 16. We have basically grown up together. We have and lots of > experiences good and bad. The biggest change in our relationship was when > we had our daughter, Olivia two years ago. I am the abled bodied part of > our relationship. I do everything and I love it. And when I mean I do > everything from bath and makeup to yard work and cooking. We don't have > anyone to help and I wouldn't like it any other way. I am a husband, a dad > and a jack of all trades. Some things I do good and some things I'm not > too good at. Some days are good and some days are bad. That's life though. > But I don't resent anything, not for one minute. Actually I feel blessed. > My biggest concern now is Amy getting through this pregnancy okay.(35 days > left!) I knew what I was getting into when I met Amy. We both knew what > were getting ourselves into when I started doing stuff for her. We also > knew what it was going to be like when we found out she was pregnant. I > don't know what to say to you in regard to you being resentful of your > position in life. You both knew what it was going to be like. Also a few > weeks ago the question was posted about the magic pill. I never said it, > but I wouldn't take Amy another way. No way no how! > > Will > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 I haven't got a response from Lee yet. Not sure I will. But I have a sneaking suspicion that he'd label those two things as being near the top of his " annoyance " list. He also doesn't like it when I yell from one room to another, ask for non-urgent things at really inconvenient times, request things in a whiney way or mumble. (The last thing especially can be a problem because he is very hard-of hearing.) Jenn Angie wrote: >Okay, i asked Doug, my husband, if he had any concerns, complaints, woes or >annoyances being my primary care giver. The one thing he truly hates doing is >wiping up after I do a bad dump (diaherrea). It just takes longer to clean me >up. Oh and he also says he hates it when I approach him in a cutesy way to >ask for help. He rather me just to spit it out, he will do it, no worries >there. He doesn't want me to be huffing and puffing or uncomfy if he can >help. All I gotta do is be direct and ask. > >Otherwise, he said he has no problems taking care of me. > >(No doghouse for him eh?) > >Angie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Angie, I don't know if you could do this, but it has helped me to feel cleaner, especially during our least fave time of the month. I have a hose hooked to the sink which is next to the potty. When I don't feel " fresh " I use that for extra cleanliness. Kinda like a bidet! haha or maybe you can invest in a bidet? Angie <angie@...> wrote: Okay, i asked Doug, my husband, if he had any concerns, complaints, woes or annoyances being my primary care giver. The one thing he truly hates doing is wiping up after I do a bad dump (diaherrea). It just takes longer to clean me up. Oh and he also says he hates it when I approach him in a cutesy way to ask for help. He rather me just to spit it out, he will do it, no worries there. He doesn't want me to be huffing and puffing or uncomfy if he can help. All I gotta do is be direct and ask. Otherwise, he said he has no problems taking care of me. (No doghouse for him eh?) Angie On 2005.10.23 20:09, KingIbexx@... wrote: > In a message dated 10/22/2005 9:19:45 PM Eastern Standard Time, > kristen@... writes: > > Am I really the only person who sometimes resents being my spouse's > Primary caregiver? Yeah, I knew when I agreed to marry him that > was severely disabled; I knew that life with him would be hard > And I knew I may lose him someday. However, I don't think I had any > Clue how hard it would truly be. Most days, things are status quo > And I don't even think of as disabled. Other days I really > Wonder what life would be like with an able-bodied spouse. > > Those of you out there, especially those of you who are married and > have kids (we have 3 y.o. twins), please respond! What is life like > for you? Any other wives or husbands that can relate to my > situation?? > > > > > > > Well, now Amy and I have been together for 10 years married for 8. We met > when we were 16. We have basically grown up together. We have and lots of > experiences good and bad. The biggest change in our relationship was when > we had our daughter, Olivia two years ago. I am the abled bodied part of > our relationship. I do everything and I love it. And when I mean I do > everything from bath and makeup to yard work and cooking. We don't have > anyone to help and I wouldn't like it any other way. I am a husband, a dad > and a jack of all trades. Some things I do good and some things I'm not > too good at. Some days are good and some days are bad. That's life though. > But I don't resent anything, not for one minute. Actually I feel blessed. > My biggest concern now is Amy getting through this pregnancy okay.(35 days > left!) I knew what I was getting into when I met Amy. We both knew what > were getting ourselves into when I started doing stuff for her. We also > knew what it was going to be like when we found out she was pregnant. I > don't know what to say to you in regard to you being resentful of your > position in life. You both knew what it was going to be like. Also a few > weeks ago the question was posted about the magic pill. I never said it, > but I wouldn't take Amy another way. No way no how! > > Will > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 A hose, huh? I'll try that one day. I'll probably end-up showering myself all over. *LOL* ~Meg. ( My Blog = <http://meg77.blogspot.com/> http://meg77.blogspot.com ) " Life is not what happens to you, But how you react to it... For what caused you react will surely pass, But how you continue to react, Can only be passed by you. " _____ From: [mailto: ] On Behalf Of Joy Sent: Monday, October 24, 2005 5:03 PM Subject: Re: Spouse as PCA Angie, I don't know if you could do this, but it has helped me to feel cleaner, especially during our least fave time of the month. I have a hose hooked to the sink which is next to the potty. When I don't feel " fresh " I use that for extra cleanliness. Kinda like a bidet! haha or maybe you can invest in a bidet? Angie <angie@...> wrote: Okay, i asked Doug, my husband, if he had any concerns, complaints, woes or annoyances being my primary care giver. The one thing he truly hates doing is wiping up after I do a bad dump (diaherrea). It just takes longer to clean me up. Oh and he also says he hates it when I approach him in a cutesy way to ask for help. He rather me just to spit it out, he will do it, no worries there. He doesn't want me to be huffing and puffing or uncomfy if he can help. All I gotta do is be direct and ask. Otherwise, he said he has no problems taking care of me. (No doghouse for him eh?) Angie On 2005.10.23 20:09, KingIbexx@... wrote: > In a message dated 10/22/2005 9:19:45 PM Eastern Standard Time, > kristen@... writes: > > Am I really the only person who sometimes resents being my spouse's > Primary caregiver? Yeah, I knew when I agreed to marry him that > was severely disabled; I knew that life with him would be hard > And I knew I may lose him someday. However, I don't think I had any > Clue how hard it would truly be. Most days, things are status quo > And I don't even think of as disabled. Other days I really > Wonder what life would be like with an able-bodied spouse. > > Those of you out there, especially those of you who are married and > have kids (we have 3 y.o. twins), please respond! What is life like > for you? Any other wives or husbands that can relate to my > situation?? > > > > > > > Well, now Amy and I have been together for 10 years married for 8. We met > when we were 16. We have basically grown up together. We have and lots of > experiences good and bad. The biggest change in our relationship was when > we had our daughter, Olivia two years ago. I am the abled bodied part of > our relationship. I do everything and I love it. And when I mean I do > everything from bath and makeup to yard work and cooking. We don't have > anyone to help and I wouldn't like it any other way. I am a husband, a dad > and a jack of all trades. Some things I do good and some things I'm not > too good at. Some days are good and some days are bad. That's life though. > But I don't resent anything, not for one minute. Actually I feel blessed. > My biggest concern now is Amy getting through this pregnancy okay.(35 days > left!) I knew what I was getting into when I met Amy. We both knew what > were getting ourselves into when I started doing stuff for her. We also > knew what it was going to be like when we found out she was pregnant. I > don't know what to say to you in regard to you being resentful of your > position in life. You both knew what it was going to be like. Also a few > weeks ago the question was posted about the magic pill. I never said it, > but I wouldn't take Amy another way. No way no how! > > Will > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Wow, thanks to all of you who responded to my post. It is so interesting to read all the different points of view. In response to some questions/comments I wanted to add a little bit more on the topic. I am not a caregiver 24/7. I work full-time and am away from the home approximately nine hours a day. For me, I enjoy working and that is my " break " . We have a full-time babysitter for our kids who also doubles as 's aide when he needs a drink, lunch or assistance with anything else. Her interaction with him is fairly minimal and she doesn't do any physical care. My main gripe is not having the freedom to go on a girls' weekend to the beach or spend a Saturday doing my own thing. is at a point where he is not comfortable staying overnight with anyone other than me. He will occasionally spend a day with his mom or sister, but it takes a lot for him to agree to this and it is never enthusiastic on his part. I don't think it is wrong for me to want to spend time without my spouse. I actually think it's healthy. Jenn, please ask Lee to respond! I view your situation as very similar to ours. I know that most of the time it doesn't pay to think about things that can't change anyway, but it's nice to know you are not alone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Tweed wrote: >I don't think it is wrong for me to want to spend time without my >spouse. I actually think it's healthy. > I think so too. I would actually like for my husband to be able to go on weekend trips by himself. Some of the guys we know are going on a trip to a men's monastery, and I know he really, really wishes he could go. And honestly, I'd like to be able to go alone on overnights with girlfriends too. Tonight at dinner we were talking about this whole discussion and we tried wracking our brains to think if we even knew anyone that could both physically take care of me and would be OK with all the other nitty-gritty stuff. We seriously could not think of one single person! It also doesn't help that our house is small and kind of set up for only Lee to take care of me. Our bed is up real high cuz it's easier on his back, but it's too high to use a hoyer lift. In fact I permanently lent my hoyer lift to Kris B because there is also no extra space to keep it handy in our house. So in otherwords, I'd have no problem being " on my own, " but I'm sure how I'd make it work. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Hey Jenn, Maybe y'all could compromise for the monastery trip. You and the girls go with Lee. Then during the day, he and his male buddies could go off, and then he could stay with you all at night. Then while he is gone, you and the girls could just browse malls, etc. So you all get a little vacation? You're still together technically, but not too much. Possibility? Just brainstorming! Blessings, Holly > > From: Jenn Malatesta <nekrosys@...> > Date: 2005/10/24 Mon PM 10:00:31 GST > > Subject: Re: Re: Spouse as PCA > > Tweed wrote: > > >I don't think it is wrong for me to want to spend time without my > >spouse. I actually think it's healthy. > > > I think so too. I would actually like for my husband to be able to go > on weekend trips by himself. Some of the guys we know are going on a > trip to a men's monastery, and I know he really, really wishes he could > go. And honestly, I'd like to be able to go alone on overnights with > girlfriends too. Tonight at dinner we were talking about this whole > discussion and we tried wracking our brains to think if we even knew > anyone that could both physically take care of me and would be OK with > all the other nitty-gritty stuff. We seriously could not think of one > single person! It also doesn't help that our house is small and kind of > set up for only Lee to take care of me. Our bed is up real high cuz > it's easier on his back, but it's too high to use a hoyer lift. In fact > I permanently lent my hoyer lift to Kris B because there is also no > extra space to keep it handy in our house. > > So in otherwords, I'd have no problem being " on my own, " but I'm sure > how I'd make it work. > > Jenn > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Thanks for the idea. I actually already suggested this as an option, but Lee didn't think it'd work very well for some reason or another. I thought it was a good idea too. Maybe he is afraid he'll spend too much money at the mall?! We do definately get a lot of daytrips away from one another, so at least there is that. Jenn hollyrp@... wrote: >Hey Jenn, >Maybe y'all could compromise for the monastery trip. You and the girls go with Lee. Then during the day, he and his male buddies could go off, and then he could stay with you all at night. Then while he is gone, you and the girls could just browse malls, etc. So you all get a little vacation? You're still together technically, but not too much. Possibility? >Just brainstorming! >Blessings, >Holly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 Chuck does very little care for me and for our 1st 5 years together we didn't live in the same house. There are definitely things he doesn't like doing, but he's always been very willing, nonetheless. He and I do many things for each other out of love and caring for each other's wellbeing. I glad we're also free to say, " I don't like doing this " even though we're willing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2005 Report Share Posted October 24, 2005 This is sweet, Bob. On 10/23/05 11:46 PM, " rcmjr@... " <rcmjr@...> wrote: > I was certainly Vickie's primary care giver for the last ten years. The only > time we were ever apart was back in '95 during our first six months married > when I went out of town for two nights. That wouldn't have been possible in > the most recent five years or so as she could not tolerate the pain of her > aide > using the Hoyer lift to put her in her chair, nor could she ever get seated > comfortably. I lifted her and placed her in the chair or bed, etc. each time. > Her aide would get her dressed perhaps four days a week, but would not lift > her. During our first years together, I remember thinking that I needed a > break, but that feeling went away after a maybe 3 or 4 years, and I never > felt > the need again. Taking care of her and all of her needs, including turning > her > throughout each night was no different than taking care of myself - well, > that's not exactly true - I didn't feel that sense of love taking care of > myself. I mean, good-grief, how many AB guys married to AB females get to > pick > them up and hold them in their arms several times each and every day. I was > married to AB women for 24 years before and never got to do that! > > Vickie got her first aide (actually the only aide we ever had) only one year > before we met. This was after her first husband died at age 39. He was her > sole caregiver for 8 or 9 years before that. Before her marriage, it was only > members of her family - parents, or one or another of two sisters, and rarely > their husbands. > > I broke my shoulder back in '96 and for a couple of months her 16 year old > niece had to help me with the lift, then it was almost six months before I > could actually pick her up in my arms again - damn shoulder took a year in > all > to heal. Because of her pain, I did began to worry in the last year or so > about what would happen when I got too old to lift her comfortably. > > I also did all lifting at doctor's appointments, hospitals, dentists, etc., > - x-ray tables, CTs, surgical tables - she wouldn't have procedures without me > present - not my choice - hers - actually both my AB wives were also like > that! - go figure! > > Bob > > C Manning Jr > PO Box 1248 > Decatur GA 30031-1248 > > 404 728-8297 home > 404 725-1842 cell > > residence: > 2205 N Crossing Way > Decatur GA 30033-4175 > > work email: > rmanning@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 I never read that anyone was " tired " of being the caregiver. I think you missed the point. I think there are days the caregiver is just plain tired. So what? That's being very honest and very human. Sometimes people need a break or a little help. That's fine and no one should feel guilty for admitting that. It's better than holding it in. That's when the resentment begins. I think it's better to say, " I need a break. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Everyone needs occasional breaks, regardless of what we're doing. None of us are machines. I'm sure your hubby loves you and loves what he's doing. That's besides the point. Do you understand what I'm saying? Also, what does gender have to do with anything?!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Resent, tired, who cares. Maybe she just typed the word wrong. I've been in a relationship living with the same guy for 25 yrs and both of us are disabled. I'm a SMA2/3 and he is a paraplegic. For several years now I've been in charge of his care. He developed having seizures for some unknown reason. He has short term memory and confusion and can't be left alone. I can't physically do everything for him but I am completely in charge of his affairs. I have to make sure he has 24 hr caregivers, and that they show up and do what they're supposed to do. Being in a confused state isn't always easy, he'll keep asking the same question over and over, and please don't say just walk away that don't work either. Even when he's in the hospital he still requires my attention, not understanding why he's there, not being able to talk with the Drs. At home when a caregiver don't show I must either find a fill in or make sure things are in place where I need them before the other 1 leaves. He spends that time in bed so he won't be able to roam. A lot of times the caregivers don't show and then I got to go through the hiring and interviewing again. It's hard to plan a day out because you don't know for sure whether the caregiver is going to show. Yes sometimes I get tired and maybe resent it a little that my life evoles around him so much. Sometimes it's hard leaving him because he is more comfortable with my being around. You can leave the house but yet you have to keep up with things at home with the cell phone. It'd be great to get away for a girls weekend, I don't care how old I am. Even though we aren't married I'm still in love with him, I wouldn't leave him for anything. It maybe hard for some to understand what we're trying to say here, you need to be in our situation. Sure it's easy to say i'm going out for the day but yet back in your mind they are still there. I just don't get it some people think that us women shouldn't get tired being a caregiver, why not. Just because we're women we're supposed to be more caring, a relationship is between 2 people a man can get tired just as tired as we do. I can relate with the lady who stated her husband felt more comfortable with her care and not with others, mine the same way. I don't believe anybody would want to spend there every minute with their mate. Not going anywhere or doing anything apart, if you do you must be newly wed. I'm sorry if i've rambelled on but I just wanted to give my thoughts about this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 I don't want to start any fights or anything, but I'd like to say some comments. First, I'm a little surprised that a " woman " is the one feeling a bit tired of being the caregiver just because " typically " women are known to be the nurturing type and all that junk. I'm not putting any one down, I just found it surprising to me. The other comment I want to make is that I feel that after marriage " girls weekends out " are kind of over. I mean isn't that part of why we get married? So we're not all giving our lives to our friends but rather to the one we chose to spend our life with? Not sure if I am saying exactly what I am thinking, but I hope it makes some kind of sense. That is not to say we can't hang out with our friends, but spending a whole weekend away to me would totally suck...and my hubby agrees. Sure there are things I can't do that he can, but we do all kinds of fun stuff together that we both enjoy and no weekend away with the girls can beat that for me! Tweed <kristen@...> wrote: Wow, thanks to all of you who responded to my post. It is so interesting to read all the different points of view. In response to some questions/comments I wanted to add a little bit more on the topic. I am not a caregiver 24/7. I work full-time and am away from the home approximately nine hours a day. For me, I enjoy working and that is my " break " . We have a full-time babysitter for our kids who also doubles as 's aide when he needs a drink, lunch or assistance with anything else. Her interaction with him is fairly minimal and she doesn't do any physical care. My main gripe is not having the freedom to go on a girls' weekend to the beach or spend a Saturday doing my own thing. is at a point where he is not comfortable staying overnight with anyone other than me. He will occasionally spend a day with his mom or sister, but it takes a lot for him to agree to this and it is never enthusiastic on his part. I don't think it is wrong for me to want to spend time without my spouse. I actually think it's healthy. Jenn, please ask Lee to respond! I view your situation as very similar to ours. I know that most of the time it doesn't pay to think about things that can't change anyway, but it's nice to know you are not alone! A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Thanks . I don't think I missed the point. I don't even disagree that some people may get " tired. " I was simply saying I'm surprised by it being a women. That's just ME being surprised, not a big deal I thought. I don't think she should feel guilty either. I just think not ALL people will need a break. I used to think that and feel it when past ppl kind of got tired of helping me...but some people can help us without thinking twice, as someone stated " as caring for himself. " For some people they never think twice that we need the help and its natural for them to just do it. I am so very thankful my hubby is one of those people. I didn't believe they existed, but they do! Aunt617@... wrote: I never read that anyone was " tired " of being the caregiver. I think you missed the point. I think there are days the caregiver is just plain tired. So what? That's being very honest and very human. Sometimes people need a break or a little help. That's fine and no one should feel guilty for admitting that. It's better than holding it in. That's when the resentment begins. I think it's better to say, " I need a break. " Quote Link to comment Share on other sites More sharing options...
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