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RSD and caregivers

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Old 02-02-2011, 11:10 AM   #1
RUReady
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Default RSD and caregivers

Recently my wife has been struggling with the role of caregiver , which I understand , as a huge burden has been placed on her . I feel guilty not being able to do the things I could do before and try to look at it from her perspective . The best I can come up with is RSD is similar to having a terminal illness yet you have no end line strategy , you have no guidelines as to what is coming next and what to expect . Does this make sense and how to you help your spouse better understand ? I am not a complainer by nature and have always been the one providing help when needed so I guess it is an adjustment as well for me in a way . Any insight would be appreciated .
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Old 02-02-2011, 12:30 PM   #2
keep smilin
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Originally Posted by RUReady View Post
Recently my wife has been struggling with the role of caregiver , which I understand , as a huge burden has been placed on her . I feel guilty not being able to do the things I could do before and try to look at it from her perspective . The best I can come up with is RSD is similar to having a terminal illness yet you have no end line strategy , you have no guidelines as to what is coming next and what to expect . Does this make sense and how to you help your spouse better understand ? I am not a complainer by nature and have always been the one providing help when needed so I guess it is an adjustment as well for me in a way . Any insight would be appreciated .
RU Ready..

Iam very sorry for your dismay.. I understand your struggles, inside your heart as well outside..I struggle with this same issue myself along with my husband, Iam sure, and we also have 2 beautiful children, 17 and 14 yrs. of age.. So my daily concerns of my future overflow on to them as well... Your feelings are very valid and I see no other way than to try and walk in their shoes at times.. it is a reality check..I hate it, as I would hate for one of them to suffer with RSD and me watch them struggle with their pain... I try to live outside of my RSD box and look within..often as I can muster up the energy...There is no magic answer except...but I agree that this illness of ours is comparable to a termnal illness with as you say..no end in sight..but it does test our willingness to fight and stay positive..and our families... our norm is no longer..AND it also puts our family foundation, our unit to the test, daily..as we no longer know or remember ourselves, well our loved ones I am sure (I know) they struggle with the same feelings in that regard.. but we did not ask for this illness.. OMG who would??..others realize that... What does not kill us..makes us stronger..(well not quite that harsh) but... we must hold tight and keep the love and concern flowing, in spite of what is happening to us .. I often say..although my pain is devestating for all of us..RSD is not all my life nor their lives is about.. mine showed up 45 years into my life..We ride the roads together, good and bad..including what is happening to them on a daily basis as well, as other 'stuff' still still happens as before..life! My point is... your love will get you thru and if you ask your wife..I am sure she'll say she loves you for all that you are today and for all that you were before rSD.. Hold on, honey as we are still blessed..you would do it all for her if the tables were turned... I hope I helped you...



Hugz to a very nice day..
Kathy
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Old 02-02-2011, 01:05 PM   #3
gramE
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Dear Linda,
This is the kind of trial that can make you bitter or better, and better is a much better choice. You have less trials because bitterness makes every issue a trial. Responding in love when the going gets tough, draws you closer. I try to set myself up with a space of my own, when the walls seem to close in on us. I used to take two or three vaca a yr to visit my sis'. Or just take off for a couple of days to the lake and watch birds. Now I'm very limited physically and by the meds. But my husband still needs his space that sometimes doesn't include me.
So I have(and am refining still) made myself a room where, if he slid me some food under the door, I could stay and keep amply occupied for a couple of days. I can study, meditate, pray, correspond, sleep, read, and thanks to a very generous
Christmas gift of an IPad I can follow my friends on here,
facebook and a couple of other places and play some cool
games, and all my photos are loaded on here. The point is our
time together is more enjoyable because we both realize we
need a bit of space. His willingness to expect less now that the
RSD has taken up residence than I would have contributed
before is an amazing gift. I'm a different person physically, and
we are learning to walk this path much slower, but much more
in step with one another. He is making a lot of sacrifices and I
try to recognize that fact.
We have fun saying we each have have half a brain/memory and together maybe we can remember the important stuff. Two years ago he suffered a TBI but he's good at reminding me
where the conversation was going when I just forget,
midstream. And if all else fails we round up a few of our ten
g'kids for entertainment. Many good scrabble opponents as long as I supply some snicker doodles .

The adjustments have been difficult, but we are learning to live within our new boundaries.

Remember, and this too shall pass. Tomorrow is a new day.
Twin g'sons are the entertainment tomorrow, age 11. They can play the video games as long as they play a Scrabble turn!
Have a great week end!
Pat e

RUReady,
I copied my response to nevadabound just a couple of days ago. Very valid question you ask, but I think a thought I would add to my response to you is to be careful not to be too quiet about what is going on. Love covers all. Hearing how a spouse is feeling allows your wife to have a sympathetic response to you. She can't read your mind and possibly misinterpret your silence.

I do understand that in addition to the adjustments that come with RSD physically, emotionally, and mentally you were the caregiver and provider. But you are a team in this and working as a team in every facet of your life will bring you both comfort and satisfaction.

I'm an ADD always on the go, chairman and planner of our entertainment and family gatherings. Then one day after an accident our whole life is 180 degrees different. Now, I'm quite often housebound, and my ability to walk more than 200 yds is limited. But I'm learning that different isn't bad, just different. Things in our life could be much worse. Being in our 60's we are trying to take what we've been given for today and do our best.

This is the best place to ask your question. I hope you brought your pencil and notebook, because I'm sure you are going to want to take notes.

Blessings to you both,
Pat
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Old 02-02-2011, 10:11 PM   #4
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Quote:
Originally Posted by RUReady View Post
Recently my wife has been struggling with the role of caregiver , which I understand , as a huge burden has been placed on her . I feel guilty not being able to do the things I could do before and try to look at it from her perspective . The best I can come up with is RSD is similar to having a terminal illness yet you have no end line strategy , you have no guidelines as to what is coming next and what to expect . Does this make sense and how to you help your spouse better understand ? I am not a complainer by nature and have always been the one providing help when needed so I guess it is an adjustment as well for me in a way . Any insight would be appreciated .
Dear RuReady;

I am sorry you and your wife are going through these adversities. Maybe there is a support group your wife could attend for caregivers, they do get burned out and tired and question there abilities to cope just as we do. We suffer a huge loss with this change and we just have to get creative to give in other ways but they are just as meaningful. Don't feel guilty over something you have no control over, just try to find ways to contribute back to your family (or wife) in other ways. Things you can do to make her day a bit easier, be compassionate (not guilty) just as she is trying to be with you. Keep it simple but meaningful. Just take things a day, an hour, or a minute at a time. It's really not about the disease as it is more about "usually" the abrupt changes that take place. Only time can make these adjustments. I actually went outside for the time in years and helped my husband plow the snow. I could only withstand about fifteen minutes, but it helped him a great deal, he was very proud of me, even high fived me on the way in. I am in pain right now, but it was worth it and I probably would have been in pain either way. This is a journey of the unknown, not the inevitable, just do the best you can do and all else will fall into place. God Bless you both

Jeanie
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Old 02-03-2011, 12:33 AM   #5
Lisa in Ohio
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Hi R U, I have so often felt the same way. I feel so guilty when my 75 year old dad has to mow my yard and shovel my snow. I have wondered about the issue of RSD being similar to a terminal illness. In all reality, even though we all hope, we know that there is no end in sight and things will continue to get worse. However, terminal illness is treated more humanely than RSD, adequate pain control, home health care and even to the point that terminal patients can sometimes say how and when they want to give up and die. I pray that soon I will have this option. Lisa
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Old 02-03-2011, 04:45 AM   #6
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Well I am not married and don't live with my mom but she is my biggest support. When I cry from pain she does as well. She says there is nothing worse then seeing your child suffer. Anyhow the first year of this my mom became so depressed and isolated. In the past few years she has begun to push herself more. She is taking a knitting class and meeting with friends. I truly feel it is important for our loved ones to have a life outside of this. To have a break so to speak for them can help them deal with our condition.
I also agree about support groups and or therapy.
On a side note things do change on every level with rsd. You may not be able to do what you could before together but this is the time to find what you can do. So for example my mom and I started playing board games or go out to eat by the water which both of us really like. I am trying to follow this train of thought in my life in general. There is a lot that one can't do with this but there are new things that you may find you can do and enjoy. I know it is not the same but any brighter times is helpful.
Lastly I understand the guilt feeling but it is not productive. I know one can't shut their thoughts and feelings off but maybe you can tell your significant other how you feel and work on ways to not see this condition as something you should feel guilty about. Am I making sense?
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Old 02-19-2011, 10:36 AM   #7
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I feel the same way for about my husband. I feel so bad for him because life before RSD, while hard and filled with long work days, was at least enjoyable to a certain degree. No matter how hard or frustrating work was, or how upset we were, we could always comfort each other. I was the one that took care of the housework, took care of the kids, took care of our dogs, ran the "taxi service" for the kids, cooked, shopped, etc. Now, I can't even shower with his help. I have trouble stepping into our tub/shower. He has to help me, I can no longer bend over to wash my legs, etc so he has to. I can't dry or dress myself without his help. We fight with our auto insurance every step of the way. So far, we have been lucky and usually "win". Currently, we are fighting with SSI, but we do have an attorney that has actually made progress and feels very, very good about my claim.

This may be too much information, but our sex life went from very active to non-existant. In Sept of 2010, I had a spinal stimulator implant to "help" with the pain in my right foot and leg, only to make things much worse. They had to re-do it in Dec of 2010, as the battery popped out of my side about 1/2". It was horrible! Since Aug of 2010, we have only had one attempt at "sex". He was extremely sorry, as he saw how much pain I was in. I know that our marriage isn't based solely upon this, and for that I am very grateful. It's just I feel like I am a failure of a wife, a woman, especially since pre-RSD we had a very physcial as well emotional life. We aren't very old - he's 46 and I'm 41. It's depressing for me, and I know it's got to be depressing to him. I can't complain or cry to him about this because I know he is "suffering" from this as well. RSD does not just affect one person, but everyone. The pain may be different and a bit easier for "caregivers", our loved ones, but it still is there. I hate it when he tries to comfort me and I cringe. I can see the hurt and loss in his eyes. He does so much for me, and how do I repay him? By crying, complaining, cringing. How long can this go on? How long can I ask him to sacrifice his life for me? From what I have read, RSD works in "stages". I fear that I am at the final stage - nothing has worked, anything they try increases the symptoms. The feet/leg cramps are awful. My toes on my right foot are fused - when I get cramps they literally stick way up and out. It is hard to get it to go away as I can't just "stand on it" or massage it because touching my skin is horrible. I just ride it out. I'm tired of riding it out and relying on others.

Sorry for hijacking your thread. I too feel bad for my spouse, my "caregiver" as well as my family. I can and will only offer you a cyber hug, as the "real" hug would hurt more then it's worth.
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Old 02-19-2011, 12:13 PM   #8
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I've seen this thread for months it seems, and have been hesitant to reply. I'm my wife's caretaker. I want no harm to come to her. I want her to be as pain free as possible at any cost. We have no physical contact, she does cringe, she feels extremely guilty. I can ramble on and on about it on this site and to her all day, it makes no difference to me either way because I will always look after her until the day I die. It is her well being I look after. The thing of it is she doesn't believe me and I don't care whether she does or not. She took care of me for 30 years and I'll never forget it. We will travel through life with this burden and live our lives out the best we can. We all have a Cross to bare, mine is looking after her and hers is to cope as best she can. We'll manage and have now going on 10 years with RSD all because of a broken wrist. Such is life. We have food in the kitchen, a roof over our heads, confortable surroundings, transportation. She now has her SSDI and medicare and I still have my health. All that is left is a cure for this dreaded disease.
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Old 02-19-2011, 02:06 PM   #9
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I've seen this thread for months it seems, and have been hesitant to reply. I'm my wife's caretaker. I want no harm to come to her. I want her to be as pain free as possible at any cost. We have no physical contact, she does cringe, she feels extremely guilty. I can ramble on and on about it on this site and to her all day, it makes no difference to me either way because I will always look after her until the day I die. It is her well being I look after. The thing of it is she doesn't believe me and I don't care whether she does or not. She took care of me for 30 years and I'll never forget it. We will travel through life with this burden and live our lives out the best we can. We all have a Cross to bare, mine is looking after her and hers is to cope as best she can. We'll manage and have now going on 10 years with RSD all because of a broken wrist. Such is life. We have food in the kitchen, a roof over our heads, confortable surroundings, transportation. She now has her SSDI and medicare and I still have my health. All that is left is a cure for this dreaded disease.
Thank you for your response to this. It makes me feel somewhat better! You must be made of the "same stuff" my husband is.
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Old 02-19-2011, 04:27 PM   #10
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I am so glad I am not alone. Many of you have put voice to my feelings. I have been married to my best friend for close to 23 years (been together for 27). The last few years have been really hard on us. I was diagnosed with RSD/CRPS in Nov. 2006 after about 2 years of symptoms. Initially it was in my right arm/shoulder and I was able to continue to work (I was a RN.) and function with the help of a SCS. In Feb/Mar 2008 my stim stopped helping and the RSD/CRPS started spreading to the point where it is now and I was forced to go on total disability. It now affects both arms/shoulders, my chest wall, spine, and neck (basically anywhere a long-sleeved turtle neck shirt would cover), as well as some internal organs (most notably my stomach and heart). My husband has become my caregiver and the responsibilities of running the house and taking care of the family have fallen on him. We have two college age sons (20 and 22) who live at home, one who is attending school and the other who is also disabled with severe chronic daily migraine headaches. My husband never complains and says he meant his vows when he made them to me before God and if the roles were switched I would care for him but I still can't help but think that one day he is going to end up resenting me. Not that this is my fault or anything like that or not that he would do it on purpose but our lives have changed so drastically. We are still young. He is 45 and I am 43. We married young and had our children young and have always looked forward to this time in our life-when the kids were finishing college and we would be able to have some time to ourselves. Among other things our sex life has changed drastically and we both miss it. I am no longer able to sleep in bed and sleep in the recliner and I miss lying next to my husband at night. He misses me too. Just the intimacy of knowing the other is there. Beyond all of that there are the issues of finances. I had only been a RN for 4 1/2 yrs so my SSDI payments are nothing close to the amount I was making as a nurse. Add the medical bills to that and we have been financially hurting. We haven't had to do without any needs but it has been close at times. I feel like such a burden in so many ways. He has to help me wash my hair and shower. We have remained open and talk about these things which is a good thing but deep down inside I still have a lot of doubts and insecurities even with his reassurances.
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