Re: [QUAD-L] Spouse as Caregiver?
My caregiver history includes many different scenarios. As a C4-5 quad, It started out of rehab with my parents. They did everything from chauffeur to bowel/bladder care. I was very fortunate to have my Mom @ home fiull-time to take care of me on top of everyday family of 5 stuff. Over the 4-5 years there were very challenging times because I was 15 and all of the crap surrounding my new quad life came out on them. Both Mom & Dad did very well not venting on me, but I'm certain it added stress into their relationship. Off to college for the next 4-5 years where I hired on average 2 new attendants every semester. (no, I was not Richie Rich, every dollar came from the state Vocational Rehab) My secret was and is, develop a routine for everything and stick to it. Then, just plug willing people into the routine. Make them follow your routine or fire them. Yes, it's hard, but, for me, it's what I had to do to be as independent as I wanted to be. At the end of college I married my first wife. It was actually a condition for her to marry me that we have at least one attendant. She claimed that it was to keep her from thinking of me as a "job". Ten years later; a sexless, turbulent relationship, ending in her cheating and my moving out. It was a constant trial to keep good attendants when they see my wife not doing what they considered "wifely duties". Lesson to learn here... do not marry under conditions or prenup. They bring a black cloud into the relationship. One year later I re-married to a woman who cares for me year-round. There are days when she is tired mentally and/or physically, but we push through with communication and love. The best thing I've learned, just as we learned in rehab; do as much for yourself as you possibly can. Looking back over the past 25 years I have had over a hundred caregivers. I'll continue to do what is necessary remain independent and so should you. Get connected to your state's Voc Rehab and get as many assistive devices as you can to take the pressure off your caregiver; lifts, chairs, etc. Get employed, there's something out there for everyone. Aaron Mann On Sun, Oct 6, 2013 at 3:34 PM, Danny Hearn wrote: > Well said, Don ! > >*From:* donald scott > *To:* "quad-list@eskimo.com" > *Sent:* Saturday, October 5, 2013 8:44 PM > > *Subject:* Re: [QUAD-L] Spouse as Caregiver? > > Hi group, > > I'm not comfortable saying much about my relationship status here because > it doesn't just stay within the community and not end up on the web. I can > say I have much experience in this area. Basically It comes down to no > matter who cares for you be it a wife, parent, love one, or stranger do > everything possible that you can do yourself. For the things you can't do > yourself be patient, understanding, and grateful to those who are helping > you. That doesn't mean you have to just let them do as they please with > your care. Be clear with them what your full needs are. Be organized and > make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If > you can pay someone else or get state help to do even small stuff, I think > it's a great idea. Anything you can do to give your primary caregiver a > break is recommended. Especially if it's someone you care about being in > your life for a long time. If your in a dating or marriage situation and > want it to last you must do as I said previously. As well as continually > tell them how special and glad you are that they are willing to share all > aspects of your life together. Being disabled means we have to work twice > as hard to be romantic, sexually creative, and just plain nicer than normal > people if we want love to last. Divert the care they have to do with fun, > love, and laughs. Oh, and during your care periods try to keep things lite > and fun when ever possible. When your together not doing quad and house > stuff try really hard to make those times special. Those times can out way > the quad times. > > My 2 cents, > Donald C5-C6 22 years post > > > > >
Re: [QUAD-L] Spouse as Caregiver?
Well said, Don ! From: donald scott To: "quad-list@eskimo.com" Sent: Saturday, October 5, 2013 8:44 PM Subject: Re: [QUAD-L] Spouse as Caregiver? Hi group, I'm not comfortable saying much about my relationship status here because it doesn't just stay within the community and not end up on the web. I can say I have much experience in this area. Basically It comes down to no matter who cares for you be it a wife, parent, love one, or stranger do everything possible that you can do yourself. For the things you can't do yourself be patient, understanding, and grateful to those who are helping you. That doesn't mean you have to just let them do as they please with your care. Be clear with them what your full needs are. Be organized and make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If you can pay someone else or get state help to do even small stuff, I think it's a great idea. Anything you can do to give your primary caregiver a break is recommended. Especially if it's someone you care about being in your life for a long time. If your in a dating or marriage situation and want it to last you must do as I said previously. As well as continually tell them how special and glad you are that they are willing to share all aspects of your life together. Being disabled means we have to work twice as hard to be romantic, sexually creative, and just plain nicer than normal people if we want love to last. Divert the care they have to do with fun, love, and laughs. Oh, and during your care periods try to keep things lite and fun when ever possible. When your together not doing quad and house stuff try really hard to make those times special. Those times can out way the quad times. My 2 cents, Donald C5-C6 22 years post
Re: [QUAD-L] Spouse as Caregiver?
What Don said is absolutely truth and extremely good advice. I have myself tried doing it both ways(out of curiosity) and found that being positive is makes everything so very much easier on both ends. Bobbie Smile Everyday > On Oct 5, 2013, at 9:44 PM, donald scott wrote: > > Hi group, > > I'm not comfortable saying much about my relationship status here because it > doesn't just stay within the community and not end up on the web. I can say I > have much experience in this area. Basically It comes down to no matter who > cares for you be it a wife, parent, love one, or stranger do everything > possible that you can do yourself. For the things you can't do yourself be > patient, understanding, and grateful to those who are helping you. That > doesn't mean you have to just let them do as they please with your care. Be > clear with them what your full needs are. Be organized and make things go as > easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If you can pay someone > else or get state help to do even small stuff, I think it's a great idea. > Anything you can do to give your primary caregiver a break is recommended. > Especially if it's someone you care about being in your life for a long time. > If your in a dating or marriage situation and want it to last you must do as > I said previously. As well as continually tell them how special and glad you > are that they are willing to share all aspects of your life together. Being > disabled means we have to work twice as hard to be romantic, sexually > creative, and just plain nicer than normal people if we want love to last. > Divert the care they have to do with fun, love, and laughs. Oh, and during > your care periods try to keep things lite and fun when ever possible. When > your together not doing quad and house stuff try really hard to make those > times special. Those times can out way the quad times. > > My 2 cents, > Donald C5-C6 22 years post > >
Re: [QUAD-L] Spouse as Caregiver?
I so agree with Don, I have had good experience with family helping but honest communication is important on a regular basis. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: donald scott To: quad-list@eskimo.com Sent: Saturday, October 05, 2013 9:44 PM Subject: Re: [QUAD-L] Spouse as Caregiver? Hi group, I'm not comfortable saying much about my relationship status here because it doesn't just stay within the community and not end up on the web. I can say I have much experience in this area. Basically It comes down to no matter who cares for you be it a wife, parent, love one, or stranger do everything possible that you can do yourself. For the things you can't do yourself be patient, understanding, and grateful to those who are helping you. That doesn't mean you have to just let them do as they please with your care. Be clear with them what your full needs are. Be organized and make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If you can pay someone else or get state help to do even small stuff, I think it's a great idea. Anything you can do to give your primary caregiver a break is recommended. Especially if it's someone you care about being in your life for a long time. If your in a dating or marriage situation and want it to last you must do as I said previously. As well as continually tell them how special and glad you are that they are willing to share all aspects of your life together. Being disabled means we have to work twice as hard to be romantic, sexually creative, and just plain nicer than normal people if we want love to last. Divert the care they have to do with fun, love, and laughs. Oh, and during your care periods try to keep things lite and fun when ever possible. When your together not doing quad and house stuff try really hard to make those times special. Those times can out way the quad times. My 2 cents, Donald C5-C6 22 years post
Re: [QUAD-L] Spouse as Caregiver?
Hi group, I'm not comfortable saying much about my relationship status here because it doesn't just stay within the community and not end up on the web. I can say I have much experience in this area. Basically It comes down to no matter who cares for you be it a wife, parent, love one, or stranger do everything possible that you can do yourself. For the things you can't do yourself be patient, understanding, and grateful to those who are helping you. That doesn't mean you have to just let them do as they please with your care. Be clear with them what your full needs are. Be organized and make things go as easy as possible. IF AT ALL POSSIBLE GET OUTSIDE HELP. If you can pay someone else or get state help to do even small stuff, I think it's a great idea. Anything you can do to give your primary caregiver a break is recommended. Especially if it's someone you care about being in your life for a long time. If your in a dating or marriage situation and want it to last you must do as I said previously. As well as continually tell them how special and glad you are that they are willing to share all aspects of your life together. Being disabled means we have to work twice as hard to be romantic, sexually creative, and just plain nicer than normal people if we want love to last. Divert the care they have to do with fun, love, and laughs. Oh, and during your care periods try to keep things lite and fun when ever possible. When your together not doing quad and house stuff try really hard to make those times special. Those times can out way the quad times. My 2 cents, Donald C5-C6 22 years post
Re: [QUAD-L] Spouse as Caregiver?
Remember when Lori from the Quad list husband passed away suddenly a year ago? He was her caregiver. She ended up moving to another state to move in with her sister. It got me to thinking ... what would I do if something happened to Pete? I asked my family and my youngest sister said, without hesitation, she would take me in. And in the past 9 months she has been having Pete show her how to do things she hasn't done yet, like changing my stoma. She was 14 when I had my accident and helped with my care along with my other sister and Mother. That's how things were back in 1973 The rehab taught family member's how to care for the Newley injured person. Bobbie Smile Everyday > On Oct 5, 2013, at 9:13 PM, RONALD L PRACHT wrote: > > Im happy that we can talk about such an issue and be honest about it. For one > it helps me not feel alone and telling the truth is the only way the system > can ever change. So many quads tell this glamour story about how things are > better now than when they walked, lol. The man wanted the truth and we gave > it to him. Now we can move on to something else. This is a great list with > real people on it. > > > Ron > > From: "lwillis...@yahoo.com" > To: quad-list@eskimo.com > Sent: Saturday, October 5, 2013 7:28 PM > Subject: Fwd: [QUAD-L] Spouse as Caregiver? > > What if you don't have the money for a caregiver? What if you simply can't > find someone willing to do the "disgusting stuff?" There just is no easy > answer. This whole thread is depressing as hell. Probably because it faces > the truth of our situation. Sorry guys. Got a cloud over my head tonite. > > Sent from my iPad > > Begin forwarded message: > >> Resent-From: quad-list@eskimo.com >> From: diannal...@aol.com >> Date: October 5, 2013 at 1:48:17 PM EDT >> To: donpric...@yahoo.com, quad-list@eskimo.com >> Subject: Re: [QUAD-L] Spouse as Caregiver? >> >> -Original Message- >> From: diannal767 >> To: wheelchair >> Sent: Sat, Oct 5, 2013 1:30 pm >> Subject: Re: [QUAD-L] Spouse as Caregiver? >> >> If I had it all over to do again, I wouldn't have my spouse be my >> caregiver. At the time though we had a business which wiped us out of a lot >> of resources for us, We were led to believe if we wanted care, we'd have to >> pay for it. All went well for about 10 yrs than Dave got caregiver burnout, >> we divorced plus he wanted more than a quad woman could give. He tried the >> dating scene (yes, it was hard on me). Now he's an Independent Care >> Provider. Yes, mine. It's hard to explain to people we are not a couple. My >> granddaughter thinks he is. He has been an excellent care provider, 23 yrs >> of quadhood, now cancer. But, NO, I don't suggest it. In Dec., we would've >> been together 40 yrs. >> Dianna >> I'm sure this topic has been discussed before, but: >> >> Those of you who are married or in a serious relationship: do you choose to >> have your husband/wife as your primary caregiver or have an outside >> caregiver? >> >> I've heard and read that it is best not to have your spouse as your primary >> caregiver because it changes the dynamic of the relationship (assuming you >> were together before your injury), but I'm not sure if that's true. >> >> Your thoughts and experiences in this matter will be very helpful. >> >> Thank you, >> Don. >> -Original Message- >> From: wheelchair >> To: quad-list >> Sent: Fri, Oct 4, 2013 6:05 pm >> Subject: Re: [QUAD-L] Spouse as Caregiver? >> >> Thank You Don. You are most correct in the change of relationship dynamics. >> Granted, there are exception to each and every rule, but I know of no study >> that disputes those findings. Love can be blind for only so long. Where >> there is a way... you will also find a will. >> >> Best Wishes >> >> In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, >> donpric...@yahoo.com writes: >> I'm sure this topic has been discussed before, but: >> >> Those of you who are married or in a serious relationship: do you choose to >> have your husband/wife as your primary caregiver or have an outside >> caregiver? >> >> I've heard and read that it is best not to have your spouse as your primary >> caregiver because it changes the dynamic of the relationship (assuming you >> were together before your injury), but I'm not sure if that's true. >> >> Your thoughts and experiences in this matter will be very helpful. >> >> Thank you, >> Don. > >
Re: Fwd: [QUAD-L] Spouse as Caregiver?
True, some subjects can be depressing at times, but the thing is we should never give up hope or love of life and know there are reasons for all things.The news shows a lot of bad in the world but there is as much good and, good people as there is bad. I feel down at times but overall I am grateful to have been blessed with this strange but awesome experience in LIFE. Have a blessed restful night all, Dan H*** From: "lwillis...@yahoo.com" To: quad-list@eskimo.com Sent: Saturday, October 5, 2013 7:28 PM Subject: Fwd: [QUAD-L] Spouse as Caregiver? What if you don't have the money for a caregiver? What if you simply can't find someone willing to do the "disgusting stuff?" There just is no easy answer. This whole thread is depressing as hell. Probably because it faces the truth of our situation. Sorry guys. Got a cloud over my head tonite. Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com >From: diannal...@aol.com >Date: October 5, 2013 at 1:48:17 PM EDT >To: donpric...@yahoo.com, quad-list@eskimo.com >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >-Original Message- >From: diannal767 >To: wheelchair >Sent: Sat, Oct 5, 2013 1:30 pm >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >If I had it all over to do again, I wouldn't have my spouse be my caregiver. >At the time though we had a business which wiped us out of a lot of resources >for us, We were led to believe if we wanted care, we'd have to pay for it. All >went well for about 10 yrs than Dave got caregiver burnout, we divorced plus >he wanted more than a quad woman could give. He tried the dating scene (yes, >it was hard on me). Now he's an Independent Care Provider. Yes, mine. It's >hard to explain to people we are not a couple. My granddaughter thinks he is. >He has been an excellent care provider, 23 yrs of quadhood, now cancer. But, >NO, I don't suggest it. In Dec., we would've been together 40 yrs. >Dianna >I'm sure this topic has been discussed before, but: >> >> >>Those of you who are married or in a serious relationship: do you choose to >>have your husband/wife as your primary caregiver or have an outside caregiver? >> >> >>I've heard and read that it is best not to have your spouse as your primary >>caregiver because it changes the dynamic of the relationship (assuming you >>were together before your injury), but I'm not sure if that's true. >> >> >>Your thoughts and experiences in this matter will be very helpful. >> >> >>Thank you, >>Don. >-Original Message- >From: wheelchair >To: quad-list >Sent: Fri, Oct 4, 2013 6:05 pm >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >Thank You Don. You are most correct in the change of relationship dynamics. Granted, there are exception to each and every rule, but I know of no study that disputes those findings. Love can be blind for only so long. Where there is a way... you will also find a will. > >Best Wishes > >In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, >donpric...@yahoo.com writes: >I'm sure this topic has been discussed before, but: >> >> >>Those of you who are married or in a serious relationship: do you choose to >>have your husband/wife as your primary caregiver or have an outside caregiver? >> >> >>I've heard and read that it is best not to have your spouse as your primary >>caregiver because it changes the dynamic of the relationship (assuming you >>were together before your injury), but I'm not sure if that's true. >> >> >>Your thoughts and experiences in this matter will be very helpful. >> >> >>Thank you, >>Don.
Re: Fwd: [QUAD-L] Spouse as Caregiver?
Im happy that we can talk about such an issue and be honest about it. For one it helps me not feel alone and telling the truth is the only way the system can ever change. So many quads tell this glamour story about how things are better now than when they walked, lol. The man wanted the truth and we gave it to him. Now we can move on to something else. This is a great list with real people on it. Ron From: "lwillis...@yahoo.com" To: quad-list@eskimo.com Sent: Saturday, October 5, 2013 7:28 PM Subject: Fwd: [QUAD-L] Spouse as Caregiver? What if you don't have the money for a caregiver? What if you simply can't find someone willing to do the "disgusting stuff?" There just is no easy answer. This whole thread is depressing as hell. Probably because it faces the truth of our situation. Sorry guys. Got a cloud over my head tonite. Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com >From: diannal...@aol.com >Date: October 5, 2013 at 1:48:17 PM EDT >To: donpric...@yahoo.com, quad-list@eskimo.com >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >-Original Message- >From: diannal767 >To: wheelchair >Sent: Sat, Oct 5, 2013 1:30 pm >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >If I had it all over to do again, I wouldn't have my spouse be my caregiver. >At the time though we had a business which wiped us out of a lot of resources >for us, We were led to believe if we wanted care, we'd have to pay for it. All >went well for about 10 yrs than Dave got caregiver burnout, we divorced plus >he wanted more than a quad woman could give. He tried the dating scene (yes, >it was hard on me). Now he's an Independent Care Provider. Yes, mine. It's >hard to explain to people we are not a couple. My granddaughter thinks he is. >He has been an excellent care provider, 23 yrs of quadhood, now cancer. But, >NO, I don't suggest it. In Dec., we would've been together 40 yrs. >Dianna >I'm sure this topic has been discussed before, but: >> >> >>Those of you who are married or in a serious relationship: do you choose to >>have your husband/wife as your primary caregiver or have an outside caregiver? >> >> >>I've heard and read that it is best not to have your spouse as your primary >>caregiver because it changes the dynamic of the relationship (assuming you >>were together before your injury), but I'm not sure if that's true. >> >> >>Your thoughts and experiences in this matter will be very helpful. >> >> >>Thank you, >>Don. >-Original Message- >From: wheelchair >To: quad-list >Sent: Fri, Oct 4, 2013 6:05 pm >Subject: Re: [QUAD-L] Spouse as Caregiver? > > >Thank You Don. You are most correct in the change of relationship dynamics. Granted, there are exception to each and every rule, but I know of no study that disputes those findings. Love can be blind for only so long. Where there is a way... you will also find a will. > >Best Wishes > >In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, >donpric...@yahoo.com writes: >I'm sure this topic has been discussed before, but: >> >> >>Those of you who are married or in a serious relationship: do you choose to >>have your husband/wife as your primary caregiver or have an outside caregiver? >> >> >>I've heard and read that it is best not to have your spouse as your primary >>caregiver because it changes the dynamic of the relationship (assuming you >>were together before your injury), but I'm not sure if that's true. >> >> >>Your thoughts and experiences in this matter will be very helpful. >> >> >>Thank you, >>Don.
Fwd: [QUAD-L] Spouse as Caregiver?
What if you don't have the money for a caregiver? What if you simply can't find someone willing to do the "disgusting stuff?" There just is no easy answer. This whole thread is depressing as hell. Probably because it faces the truth of our situation. Sorry guys. Got a cloud over my head tonite. Sent from my iPad Begin forwarded message: > Resent-From: quad-list@eskimo.com > From: diannal...@aol.com > Date: October 5, 2013 at 1:48:17 PM EDT > To: donpric...@yahoo.com, quad-list@eskimo.com > Subject: Re: [QUAD-L] Spouse as Caregiver? > > -Original Message- > From: diannal767 > To: wheelchair > Sent: Sat, Oct 5, 2013 1:30 pm > Subject: Re: [QUAD-L] Spouse as Caregiver? > > If I had it all over to do again, I wouldn't have my spouse be my caregiver. > At the time though we had a business which wiped us out of a lot of resources > for us, We were led to believe if we wanted care, we'd have to pay for it. > All went well for about 10 yrs than Dave got caregiver burnout, we divorced > plus he wanted more than a quad woman could give. He tried the dating scene > (yes, it was hard on me). Now he's an Independent Care Provider. Yes, mine. > It's hard to explain to people we are not a couple. My granddaughter thinks > he is. He has been an excellent care provider, 23 yrs of quadhood, now > cancer. But, NO, I don't suggest it. In Dec., we would've been together 40 > yrs. > Dianna > I'm sure this topic has been discussed before, but: > > Those of you who are married or in a serious relationship: do you choose to > have your husband/wife as your primary caregiver or have an outside caregiver? > > I've heard and read that it is best not to have your spouse as your primary > caregiver because it changes the dynamic of the relationship (assuming you > were together before your injury), but I'm not sure if that's true. > > Your thoughts and experiences in this matter will be very helpful. > > Thank you, > Don. > -Original Message- > From: wheelchair > To: quad-list > Sent: Fri, Oct 4, 2013 6:05 pm > Subject: Re: [QUAD-L] Spouse as Caregiver? > > Thank You Don. You are most correct in the change of relationship dynamics. > Granted, there are exception to each and every rule, but I know of no study > that disputes those findings. Love can be blind for only so long. Where > there is a way... you will also find a will. > > Best Wishes > > In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, > donpric...@yahoo.com writes: > I'm sure this topic has been discussed before, but: > > Those of you who are married or in a serious relationship: do you choose to > have your husband/wife as your primary caregiver or have an outside caregiver? > > I've heard and read that it is best not to have your spouse as your primary > caregiver because it changes the dynamic of the relationship (assuming you > were together before your injury), but I'm not sure if that's true. > > Your thoughts and experiences in this matter will be very helpful. > > Thank you, > Don.
Re: [QUAD-L] Spouse as Caregiver?
-Original Message- From: diannal767 To: wheelchair Sent: Sat, Oct 5, 2013 1:30 pm Subject: Re: [QUAD-L] Spouse as Caregiver? If I had it all over to do again, I wouldn't have my spouse be my caregiver. At the time though we had a business which wiped us out of a lot of resources for us, We were led to believe if we wanted care, we'd have to pay for it. All went well for about 10 yrs than Dave got caregiver burnout, we divorced plus he wanted more than a quad woman could give. He tried the dating scene (yes, it was hard on me). Now he's an Independent Care Provider. Yes, mine. It's hard to explain to people we are not a couple. My granddaughter thinks he is. He has been an excellent care provider, 23 yrs of quadhood, now cancer. But, NO, I don't suggest it. In Dec., we would've been together 40 yrs. Dianna I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don. -Original Message- From: wheelchair To: quad-list Sent: Fri, Oct 4, 2013 6:05 pm Subject: Re: [QUAD-L] Spouse as Caregiver? Thank You Don. You are most correct in the change of relationship dynamics. Granted, there are exception to each and every rule, but I know of no study that disputes those findings. Love can be blind for only so long. Where there is a way... you will also find a will. Best Wishes In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, donpric...@yahoo.com writes: I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
Re: [QUAD-L] Spouse as Caregiver?
that's a good way to explain it. How do I expect Pete to put on a care giver hat, then put on a "lovers" hat, then my "drivers" hat. Pete dose the laundry, shopping, laundry, cooking, cleaning and dishes. He dose EVERYTHING I do nothing. We do take time to go out ... In between bed sores that land me in bed for weeks or months ... like right now as a matter-of-fact. Bobbie -Original Message- From: diannal767 To: bobbiehumphreys7 Sent: Sat, Oct 5, 2013 1:33 pm Subject: Re: [QUAD-L] Spouse as Caregiver? that's a good way to explain it. How do I expect Pete to put on a care giver hat, then put on a "lovers" hat, then my "drivers" hat. Pete dose the laundry, shopping, laundry, cooking, cleaning and dishes. He dose EVERYTHING I do nothing. We do take time to go out ... In between bed sores that land me in bed for weeks or months ... like right now as a matter-of-fact. Bobbie -Original Message- From: Gmail To: Don Price Cc: quad-list Sent: Fri, Oct 4, 2013 9:22 pm Subject: Re: [QUAD-L] Spouse as Caregiver? Don, today just happens to be mine & sweet Pete's 31st Anniversary of when we met. I was 9 years post and it was love at first sight for Pete ... it took me only 1 more date the following day. We've been inseparable ever since. Pete has been my soul care giver 24/7/365 for over 28 years now. He got certified 26 years ago to become my full-time care giver. Were in a 400 square foot apartment and together CONSTANTLY! We get along extremely well and he takes amazingly the best care I could ask for. For us the "secret" is that we give each other space and time to be alone to do whatever. The thing is every year ( just about ) there is something else that is added on that Pete needs to do for my care. I do not recommend a spouse or significant other be a care giver. It just puts to much stress on the relationship. How do I expect Pete to put on a care giver hat, then put on a "lovers" hat, then my "drivers" hat. Pete dose the laundry, shopping, laundry, cooking, cleaning and dishes. He dose EVERYTHING I do nothing. We do take time to go out ... In between bed sores that land me in bed for weeks or months ... like right now as a matter-of-fact. Bobbie Smile Everyday On Oct 4, 2013, at 4:53 PM, Don Price wrote: I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
Re: [QUAD-L] Spouse as Caregiver?
In my case it completely ruined my marriage in many ways. Here in Missouri, I
did not qualify for any outside help of any kind or any aides or caregivers. So
for 16 plus years my wife has been my sole wife/caregiver/nurse and etc. After
16 years she is fed up and sick of it and complains and nags and puts me down
constantly--as if now i'm just another burden or pet or grandkid or something
and not a husband or partner.Not much love anymore and now never sex not even
oral--she say's whats the point with a quadriplegic. I can't say I blame her in
many ways, after years of bowel routines and digital stym and other fun things
like changing my catheters and bags plus treating any presure sores and etc. I
try to be polite and ask things like--hon, when you get time today could you
get my toothbrush & things out so I can brush my teeth? her reply... you are
one demanding son of a bitch (why don't you get it yourself?) {I can't get into
our bathroom unless i'm
in my showerchair } Some days are good but many are just awful. There are fun
times and family times but I think she will be relieved when I die (except for
the loss of all my income .)Yep. Lori-told me years ago that when a partner
becomes the full time care-giver it ruins the dynamics of a loving normal
marriage. That sort of sums it up for me, lol cya all later, Dan***
From: Don Price
To: "quad-list@eskimo.com"
Sent: Friday, October 4, 2013 3:53 PM
Subject: [QUAD-L] Spouse as Caregiver?
I'm sure this topic has been discussed before, but:
Those of you who are married or in a serious relationship: do you choose to
have your husband/wife as your primary caregiver or have an outside caregiver?
I've heard and read that it is best not to have your spouse as your primary
caregiver because it changes the dynamic of the relationship (assuming you were
together before your injury), but I'm not sure if that's true.
Your thoughts and experiences in this matter will be very helpful.
Thank you,
Don.
Re: [QUAD-L] Spouse as Caregiver?
Ive been a c6-7 quad for 16 yrs. My parents helped me with my care when I got out of the hospital in 1998. About a year later my mom filed for divorce and left me and my dad. he works second shift, so i had to learn to take care of things by myself from 2-midnight on the spur of the momment. So,for the past 15 yrs my dad has been my sole caregiver. I has been rough on me and him. I wouldnt suggest it for anyone that has an alternative. I dont really have a say in how alot of things go because I need my fathers help. It just puts a person in a bad position with little they can say or do but endure it. Dont get me wrong, i appreciate the help, but i dont feel like a man alot of times. The bowell regimines are what really puts a damper on a quads life. between the time it takes every other day, planning around it, and making sure you have help to get it done properly..it just plain sucks. when I get older, I may look into other options, such as a colostomy bag. I dont know if a stranger is the answer either...I can see where many problems would come in to play with that to. Who wants to sign up to pull crap out of a person ass everyday? Ron From: Joan Anglin To: 'Don Price' ; quad-list@eskimo.com Sent: Friday, October 4, 2013 10:53 PM Subject: RE: [QUAD-L] Spouse as Caregiver? I know personally three families whose spouses are the caregivers, two of the family have done just fine over the last 12-13 years, the other family almost split up and things got much better when the spouse was no longer the caregiver. In my case it was my daughter who was my primary caregiver while she was still quite young, and it did affect our relationship and we both agreed to use somebody from the outside. Now, 18 years later she has been my primary caregiver for 4 ½ years and it has worked out beautifully. I feel that there are special risks in using a family member. It still takes a lot of respect for each other and especially for me as her mother letting her be the one to make certain decisions about my care (especially wound care) and having faith in that person. Don’t know if that helped. Thanks Joan From:Don Price [mailto:donpric...@yahoo.com] Sent: Friday, October 04, 2013 1:53 PM To: quad-list@eskimo.com Subject: [QUAD-L] Spouse as Caregiver? I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
RE: [QUAD-L] Spouse as Caregiver?
I know personally three families whose spouses are the caregivers, two of the family have done just fine over the last 12-13 years, the other family almost split up and things got much better when the spouse was no longer the caregiver. In my case it was my daughter who was my primary caregiver while she was still quite young, and it did affect our relationship and we both agreed to use somebody from the outside. Now, 18 years later she has been my primary caregiver for 4 ½ years and it has worked out beautifully. I feel that there are special risks in using a family member. It still takes a lot of respect for each other and especially for me as her mother letting her be the one to make certain decisions about my care (especially wound care) and having faith in that person. Dont know if that helped. Thanks Joan From: Don Price [mailto:donpric...@yahoo.com] Sent: Friday, October 04, 2013 1:53 PM To: quad-list@eskimo.com Subject: [QUAD-L] Spouse as Caregiver? I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
Re: [QUAD-L] Spouse as Caregiver?
Don, today just happens to be mine & sweet Pete's 31st Anniversary of when we met. I was 9 years post and it was love at first sight for Pete ... it took me only 1 more date the following day. We've been inseparable ever since. Pete has been my soul care giver 24/7/365 for over 28 years now. He got certified 26 years ago to become my full-time care giver. Were in a 400 square foot apartment and together CONSTANTLY! We get along extremely well and he takes amazingly the best care I could ask for. For us the "secret" is that we give each other space and time to be alone to do whatever. The thing is every year ( just about ) there is something else that is added on that Pete needs to do for my care. I do not recommend a spouse or significant other be a care giver. It just puts to much stress on the relationship. How do I expect Pete to put on a care giver hat, then put on a "lovers" hat, then my "drivers" hat. Pete dose the laundry, shopping, laundry, cooking, cleaning and dishes. He dose EVERYTHING I do nothing. We do take time to go out ... In between bed sores that land me in bed for weeks or months ... like right now as a matter-of-fact. Bobbie Smile Everyday > On Oct 4, 2013, at 4:53 PM, Don Price wrote: > > I'm sure this topic has been discussed before, but: > > Those of you who are married or in a serious relationship: do you choose to > have your husband/wife as your primary caregiver or have an outside caregiver? > > I've heard and read that it is best not to have your spouse as your primary > caregiver because it changes the dynamic of the relationship (assuming you > were together before your injury), but I'm not sure if that's true. > > Your thoughts and experiences in this matter will be very helpful. > > Thank you, > Don.
Re: [QUAD-L] Spouse as Caregiver?
Thank You Don. You are most correct in the change of relationship dynamics. Granted, there are exception to each and every rule, but I know of no study that disputes those findings. Love can be blind for only so long. Where there is a way... you will also find a will. Best Wishes In a message dated 10/4/2013 3:53:21 P.M. Central Daylight Time, donpric...@yahoo.com writes: I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
[QUAD-L] Spouse as Caregiver?
I'm sure this topic has been discussed before, but: Those of you who are married or in a serious relationship: do you choose to have your husband/wife as your primary caregiver or have an outside caregiver? I've heard and read that it is best not to have your spouse as your primary caregiver because it changes the dynamic of the relationship (assuming you were together before your injury), but I'm not sure if that's true. Your thoughts and experiences in this matter will be very helpful. Thank you, Don.
