Act Acting » Career Acting » MS Support for significant others with MS
MS Support for significant others with MS
Question:
I am just looking for someone to chat with now and then. My husband has recently been diagnosed with MS. Us significant others suffer alot too. Not like the one who has MS. We are the ones who help the one who is with the disability. When my husband was in the middle of his last attack. It was I who did all the caring for him. For a few weeks he couldn’t drive his car. I myself do not drive. I would walk to the grocery store to shop with a pull shopping cart. I helped him when his walking wasn’t so good. I made him do his physical therapy exercises each day. I made sure he took his Prednisone on schedual. If he needed anything, I did all the chasing around to get it. Nobody from his family would come around and see if he needed anything or would bring him anything. Yes they did visit my husband in the hospital and brought get well cards. All I got was hell from my inlaws about how I am caring for my husband. I would hear my one sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the Neurologist had said yes. I was even accused of making my husband check out to soon from the hospital. My sister-in-law wanted my husband to milk the insurance for exta time in the hospital. She thought he wasn’t ready to come home. I think a person can sometimes recover better at home with the help of their family. We were given a choice of staying an extra night to recieve the last round of Solumedrol in the IV or doing it in the out patient department. My husband chose to go home and come back for the last treatment session. He didn’t like the hospital and missed having the dog by his side in bed and being home with me and our son. I would get blamed that the dog and 2 cats we have are the cause of his illness. To date there is nothing that says pets cause MS. The same sister-in-law would accuse me of not taking good care of my husband. She’d see him walk with a limp and think he’s severely sick. My husband isn’t back to 100% normal. That is just one of those things caused by MS. I have finally accepted my husband has MS and could have other attacks in the future. I wish my inlaws would accept the MS and stop acting like he’s a invalid and shouldn’t do some things. I think a person should everything they are capable of doing. This makes the person feel usefull.
Response:
Wow! Your husband’s family makes me glad that we don’t have any family. I’ll remember this when I start to wish we had family to help us. I wish there was a support group for care givers, but I don’t think there is. Please feel welcomed and free to complain, ask questions, whatever with us. It’s very common now for insurance to provide the IV treatments at home. In fact, they want to do most things at home now because they realize that hospitals are very unhealthy places. I’ve had 6 treatments at home and physical therapy too. Ann
Response:
- Hide quoted text — Show quoted text -mlrb…@aol.com (Mlrbeer) wrote: >I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too. >Not like the one who has MS. We are the ones who help the one who is with >the disability. When my husband was in the middle of his last attack. It >was I who did all the caring for him. For a few weeks he couldn’t drive >his car. I myself do not drive. I would walk to the grocery store to >shop with a pull shopping cart. I helped him when his walking wasn’t so >good. I made him do his physical therapy exercises each day. I made sure >he took his Prednisone on schedual. If he needed anything, I did all the >chasing around to get it. Nobody from his family would come around and >see if he needed anything or would bring him anything. Yes they did visit >my husband in the hospital and brought get well cards. All I got was hell >from my inlaws about how I am caring for my husband. I would hear my one >sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the >Neurologist had said yes. I was even accused of making my husband check >out to soon from the hospital. My sister-in-law wanted my husband to milk >the insurance for exta time in the hospital. She thought he wasn’t ready >to come home. I think a person can sometimes recover better at home with >the help of their family. We were given a choice of staying an extra >night to recieve the last round of Solumedrol in the IV or doing it in the >out patient department. My husband chose to go home and come back for the >last treatment session. He didn’t like the hospital and missed having the >dog by his side in bed and being home with me and our son. I would get >blamed that the dog and 2 cats we have are the cause of his illness. To >date there is nothing that says pets cause MS. The same sister-in-law >would accuse me of not taking good care of my husband. She’d see him >walk with a limp and think he’s severely sick. My husband isn’t back to >100% normal. That is just one of those things caused by MS. I have >finally accepted my husband has MS and could have other attacks in the >future. I wish my inlaws would accept the MS and stop acting like he’s a >invalid and shouldn’t do some things. I think a person should everything >they are capable of doing. This makes the person feel usefull.
On the other hand your inlaws could be like mine. (Thank God she’s married to a husband who will take care of her. Now we can live normal lives and visit them if we remember.) I guess a lot of anger goes with having a spouse with MS. I know my wife misses her family. The Doctor
Response:
Your husband is so fortunate to have you. It is great that you let him make the decisions for himself and encourage his independence as able. Sorry his parents seem to have such a lack of understanding of ms…..with time they may improve. The ms society puts out some good booklets for all of you that might help and there is in fact, at least here a group for caregivers of those with ms. Call the National MS society and the msg will put you in touch with the one nearest you. Good luck, and for those of us with ms…we appreciate the support of our caregivers and know you nee and truly deserve time to yourselves too. N
Response:
- Hide quoted text — Show quoted text ->I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too. >Not like the one who has MS. We are the ones who help the one who is with >the disability. When my husband was in the middle of his last attack. It >was I who did all the caring for him. For a few weeks he couldn’t drive >his car. I myself do not drive. I would walk to the grocery store to >shop with a pull shopping cart. I helped him when his walking wasn’t so >good. I made him do his physical therapy exercises each day. I made sure >he took his Prednisone on schedual. If he needed anything, I did all the >chasing around to get it. Nobody from his family would come around and >see if he needed anything or would bring him anything. Yes they did visit >my husband in the hospital and brought get well cards. All I got was hell >from my inlaws about how I am caring for my husband. I would hear my one >sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the >Neurologist had said yes. I was even accused of making my husband check >out to soon from the hospital. My sister-in-law wanted my husband to milk >the insurance for exta time in the hospital. She thought he wasn’t ready >to come home. I think a person can sometimes recover better at home with >the help of their family. We were given a choice of staying an extra >night to recieve the last round of Solumedrol in the IV or doing it in the >out patient department. My husband chose to go home and come back for the >last treatment session. He didn’t like the hospital and missed having the >dog by his side in bed and being home with me and our son. I would get >blamed that the dog and 2 cats we have are the cause of his illness. To >date there is nothing that says pets cause MS. The same sister-in-law >would accuse me of not taking good care of my husband. She’d see him >walk with a limp and think he’s severely sick. My husband isn’t back to >100% normal. That is just one of those things caused by MS. I have >finally accepted my husband has MS and could have other attacks in the >future. I wish my inlaws would accept the MS and stop acting like he’s a >invalid and shouldn’t do some things. I think a person should everything >they are capable of doing. This makes the person feel usefull.
Hi there, I’m the one in my family with MS. I have 3 boys and 1 very supportive husband. Being the one that sees things from the other side of the fence, I feel certain that if i didn’t have the kind of understanding support from my family, my condition would be much worse. Guilt is such a major part of having MS. I hate the fact that my responsibilities are put onto my family. However, it is only temporary and i make the most of it in the good times. Listen, you hang in there and you continue on with your husband as you have been. I know it’s gotta be hard for you, but the respect and love that we feel for our loved ones is absolutely indescribable. I can’t help but think that the burden on them is 10 fold what we’ve been saddled with. There aren’t a whole lot of people out there that would stick it out like the wedding vows promise. I admire you and hope the best for you and your family. Hang in there girl, nothing but good can result from your sticktuitiveness and obvious love and concern for your husband. Debbie Dockrey
Response:
I’m really glad you came to us. My husband is my care giver, and I agree he needs a break. I’m sorry that your in-laws aren’t understanding, puts an extra load on your shoulders i should think. We have a few SO, spouses of, relatives etc on this list, I hope you can get hooked up with someone, but you can always come to meus. I fully agree with you that the sooner one can get out of the hospital the better. There are exceptions of course. I hated being in the hospital the last time, but it was a necessity, I wished my husband could have brought my cats, though they wouldn’t of liked it. Home is home and i can understand why your husband wanted to come home. My name is slowly moving up on a waiting list for services one of the things they’ll provide is respite care. He needs to be able to go on a vacation, i won’t be ready to do that for a long time. So yes care givers need support and time off. Good luck At 10:09 PM 2/11/97 GMT, you wrote: >I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too. >Not like the one who has MS.
——————————————————- ———– There is always a little piece /_____/ of heaven in the disaster-area! ==-=-/ o o =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-======= === ( == ^ == ) === Luv Susan === ) ( == === ( ) ===-( ( ) ( ) )=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-== == (__(__) _(__)__) s_guzie…@conknet.com – Hide quoted text — Show quoted text ->>———————————————————————
Response:
On 2-11-97 mlrb…@aol.com (Mlrbeer) wrote: >I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too.
Big Snip As if your life isn’t hard enough right now, your in-laws sure aren’t helping. 
You have accepted that your husband has MS, but your in-laws don’t seem to have done the same. Not that this would make them any more helpful to you. Do they understand just what MS entails? Maybe a little education would help. Support is important for everyone involved. Being a caregiver isn’t easy & my heart goes out to you. My hubby/caregiver is a gem & I realize that without him I’d be very limited. I hope things improve for you. Post to the group whenever you need to rant or rave or just talk. That’s one reason we’re here! Lyse 
Doggies are just kids in fur. U, ,U ==o==
Response:
You sound like a wonderful wife, it’s great you care so much about your husbands need but you must also take time to care for yourself. You too have needs that you must be attended to . As far as your inlaws go, I would’nt worry to much about them. As long as you and your husband love and understand each other it does not matter what they "THINK" !! Kindy, Bobber’s
Response:
At 10:09 PM 2/11/97 GMT, you wrote: >I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too. SNIP >finally accepted my husband has MS and could have other attacks in the >future. I wish my inlaws would accept the MS and stop acting like he’s a >invalid and shouldn’t do some things. I think a person should everything >they are capable of doing. This makes the person feel usefull.
Hello, Welcome. You have found a great place to chat. Your husband is a very lucky man. I believe that it is very important that we do whatever we are able to for ourselves, also. I think there is something to be said for not only feeling useful but being treated as the adults we are, capable of making our own decisions. It is unfortunate that your husbands family are not supportive of you both. Please do not let them get to you. It is hard I know, my family can be the same way at times, but what is most important for both you and your husband is that you are there to support each other. I hope that you will continue to visit with us. Take care and my best to you both. CL Spuhler _________________________ | ~ ^ ^ | Cheryl and Dana Spuhler | ~ ()() /( | spuh…@bright.net | ~ / / | / ( | Beware of Dragons | ~00/ | |___/ ( | | ^^ | ( | |____________________(___|
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At 10:09 PM 2/11/97 GMT, you wrote: >I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too.
(snipped) Hi, I’m Tony and although my wife hasn’t been diagnosed yet, the doctor is 99% sure she has MS (he won’t diagnose her cause she hasnt’ had two attacks in the proper amount of time). Anyway, we both know she has it also. Her mother had CPMS, and we’re pretty sure, along with the doctor that Deb has RRMS (yes I’m using the old names). I’m real sorry to hear about the non-support your getting from your husbands family. I know that can be rough. We, on the other hand, have the support from both sides of the family (although both Deb’s parents have passed away, there are still 4 sisters and a brother that stay in constant contact). Keep strong, and our prayers from Virginia Beach are with you. Hey everybody, here’s a good one. The other day Deb signed a form for the school allowing our son to go on a school field trip. Today the school called and asked if she signed it or our son signed it as the signature was a scribble. Deb had to explain that she has MS and her handwriting is not the best, and yes she signed it and is well aware of the field trip, and OBTW, she is going to chaparone on the field trip. The girl on the other end of the phone at the school apologized and thanked her for her time and said have fun on the field trip. CUL Tony ************************************************* The McCann’s of Virginia Beach Anthony Debbie Anthony Timothy Theresa t…@visi.net d.mcc…@juno.com *************************************************
Response:
- Hide quoted text — Show quoted text -Mlrbeer wrote: > I am just looking for someone to chat with now and then. My husband has > recently been diagnosed with MS. Us significant others suffer alot too. > Not like the one who has MS. We are the ones who help the one who is with > the disability. When my husband was in the middle of his last attack. It > was I who did all the caring for him. For a few weeks he couldn’t drive > his car. I myself do not drive. I would walk to the grocery store to > shop with a pull shopping cart. I helped him when his walking wasn’t so > good. I made him do his physical therapy exercises each day. I made sure > he took his Prednisone on schedual. If he needed anything, I did all the > chasing around to get it. Nobody from his family would come around and > see if he needed anything or would bring him anything. Yes they did visit > my husband in the hospital and brought get well cards. All I got was hell > from my inlaws about how I am caring for my husband. I would hear my one > sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the > Neurologist had said yes. I was even accused of making my husband check > out to soon from the hospital. My sister-in-law wanted my husband to milk > the insurance for exta time in the hospital. She thought he wasn’t ready > to come home. I think a person can sometimes recover better at home with > the help of their family. We were given a choice of staying an extra > night to recieve the last round of Solumedrol in the IV or doing it in the > out patient department. My husband chose to go home and come back for the > last treatment session. He didn’t like the hospital and missed having the > dog by his side in bed and being home with me and our son. I would get > blamed that the dog and 2 cats we have are the cause of his illness. To > date there is nothing that says pets cause MS. The same sister-in-law > would accuse me of not taking good care of my husband. She’d see him > walk with a limp and think he’s severely sick. My husband isn’t back to > 100% normal. That is just one of those things caused by MS. I have > finally accepted my husband has MS and could have other attacks in the > future. I wish my inlaws would accept the MS and stop acting like he’s a > invalid and shouldn’t do some things. I think a person should everything > they are capable of doing. This makes the person feel usefull.
Feel free to stop in now and then with your concerns and/or questions. We have alot of members of this NG who are caregivers and don’t actually have MS themselves. And we’re one big supportive family to each other. While they (whoever THEY are) haven’t found the EXACT cause of MS, each day they are getting closer and closer. I believe animals have been ruled out as the source, but stay posted here for the latest or visit some of the websites: http://aspin.asu.edu/msnews (International MS Support Foundation) http://www.aquila.com/dean.sporleder/ms_home/ (MS Direct) http://www.nmss.org (National MS Society) As far as your in-laws are concerned, they seem to be going thru the usual motions for someone that they perceive as ’sick’. Many people don’t realize what the family members of a person with a debilitating REALLY need. JoAnne LeMaistre, in her book "Beyond Rage" touches upon this. As an example, while YOU are taking care of your husband, what is NOT being done that needs to be done? A TRULY caring and supportive friend/relation of yours could run your other errands for you (bank, shopping, etc.), do your yard work that you or your husband usually do or even bring you some pre-cooked meals so you can spend more time with your husband. And as to MS being perceived as making a person an invalid, just ask some of the members of this newsgroup how much MS has stopped them from living a life! In my own case, it hasn’t stopped me from pursuing my career. I look upon it as more of an inconvenience and annoyance than anything else. Stay in touch… — Paul Eberl it’s better to TRY and RISK failure than not to try and guarrantee it! = | | __ | | (__@) ______ (__@) (__@) _______ (__@)__/
Response:
hi, am also caregiver for past 8 years and know what you are talking about, i have done it all as wife is cp and been in chair 15 yrs. i get about four hours to my self on fridays and sat. morning. don’t get me wrong not complaining but would be nice to chat with another in this same status. she needs to be dressed feed, cathed 3 times daily, and all the other things we all take for granted. have a good one and would be glad to chat anytime. bill sr.
Response:
- Hide quoted text — Show quoted text ->I am just looking for someone to chat with now and then. My husband has >recently been diagnosed with MS. Us significant others suffer alot too. >Not like the one who has MS. We are the ones who help the one who is with >the disability. When my husband was in the middle of his last attack. It >was I who did all the caring for him. For a few weeks he couldn’t drive >his car. I myself do not drive. I would walk to the grocery store to >shop with a pull shopping cart. I helped him when his walking wasn’t so >good. I made him do his physical therapy exercises each day. I made sure >he took his Prednisone on schedual. If he needed anything, I did all the >chasing around to get it. Nobody from his family would come around and >see if he needed anything or would bring him anything. Yes they did visit >my husband in the hospital and brought get well cards. All I got was hell >from my inlaws about how I am caring for my husband. I would hear my one >sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the >Neurologist had said yes. I was even accused of making my husband check >out to soon from the hospital. My sister-in-law wanted my husband to milk >the insurance for exta time in the hospital. She thought he wasn’t ready >to come home. I think a person can sometimes recover better at home with >the help of their family. We were given a choice of staying an extra >night to recieve the last round of Solumedrol in the IV or doing it in the >out patient department. My husband chose to go home and come back for the >last treatment session. He didn’t like the hospital and missed having the >dog by his side in bed and being home with me and our son. I would get >blamed that the dog and 2 cats we have are the cause of his illness. To >date there is nothing that says pets cause MS. The same sister-in-law >would accuse me of not taking good care of my husband. She’d see him >walk with a limp and think he’s severely sick. My husband isn’t back to >100% normal. That is just one of those things caused by MS. I have >finally accepted my husband has MS and could have other attacks in the >future. I wish my inlaws would accept the MS and stop acting like he’s a >invalid and shouldn’t do some things. I think a person should everything >they are capable of doing. This makes the person feel usefull. >***************************************
Hi (I didn’t get your name) With all due respect, tell your in-laws to butt out. Granted they are concerned, but they don’t have a clue of what they’re talking about. It seems to me that you’re more on top of things than they are. Don’t hesitate to write. THIS GROUP IS THE BEST!!!! Take care and all the best to you and your husband. Dawn
Response:
Dawn Jenkins wrote:
in answer to our new MS caregiver…who said: > >My husband isn’t back to > >100% normal. That is just one of those things caused by MS. I have > >finally accepted my husband has MS and could have other attacks in the > >future. I wish my inlaws would accept the MS and stop acting like he’s a > >invalid and shouldn’t do some things. I think a person should everything > >they are capable of doing. This makes the person feel usefull. > >*************************************** > Hi (I didn’t get your name) > With all due respect, tell your in-laws to butt out. Granted they > are concerned, but they don’t have a clue of what they’re talking > about.
Change your phone number and don’t answer the door <LOL>!! At least you’ll have less "noise"/criticism. I’ve got a RULE about "TOXIC PEOPLE"….I don’t allow them in our life…just as I don’t allow OTHER destructive influences to affect us. > It seems to me that you’re more on top of things than they are.
That’s right…I agree with Dawn! It may be time to tell the in-laws firmly that they’re either part of the solution or part of the problem…and if they choose to be the latter…mark ‘em off your dance card! You don’t have time for it. If they wanna be part of your future, tell ‘em to get in touch with NMSS or an affiliate…and when they have more information on what you need and don’t need…get back to you <wink!>. > Don’t hesitate to write. THIS GROUP IS THE BEST!!!! Take care and all > the best to you and your husband.
Definitely, all best wishes for both of you. Hopefully, your in-laws will come around, but if they don’t <shrug>…oh, well! You’ve got enough on your plate with which to concern yourself. I don’t think you’ll have time to miss ‘em! I’m a "probable" MSer…and I’m caregiver for my husband who has myasthenia gravis (currently in remission)…just as he is caregiver for me. There’re days when we don’t do much except eat, take our medication and talk…but we do all that we can as often as we can. One thing we CAN’T do is put up with negative people who drain our strength…and who "worry away" the joy we find in life. Belle
Response:
I do not usually include messages but yours reminds me so strongly of my situation that I could not resist. I am particularly interested by the dilemma of what the person with MS can do to return the investment of time and affection from her/his significant other. For want of a better response it occurs to me that the solution is to look for ways in which my input is practical or symbolic in importance. For example: — sending cards and small gifts at appropriate times. These are APPRECIATED. — showing consideration when it may be difficult or inconvenient. — I try to refrain from talking about something that my SO is aware of in any case. That is, some things do not need repeating. — are there times when you as the person with MS can give up your dependence on the other? — are you allowing the other to have an independent and meaningful life apart from that of being a perpetual caregiver?Often the caregiver needs a caregiver. I know at least three persons with disability loan are partners with other persons with disability not to mention Chanoch. — are there ways that you can give credit where credit is too? I think that this relationship is complicated when one is seeming to get constantly "worse." I also cannot tell you where that line of reasoning would end!/Gerry Gerald Gold Department of Anthropology York University, North York, Ontario M3J 1K3 CANADA tel. 416 736 2100 [Th. 11-3:00 except for a lunch break] res. 416-225-8760 [early evening only] Dictated entirely with IBM VoiceType Dictation under OS/2 – Hide quoted text — Show quoted text -On Wed, 12 Feb 1997, Bill D Dockrey wrote: > >I am just looking for someone to chat with now and then. My husband has > >recently been diagnosed with MS. Us significant others suffer alot too. > >Not like the one who has MS. We are the ones who help the one who is with > >the disability. When my husband was in the middle of his last attack. It > >was I who did all the caring for him. For a few weeks he couldn’t drive > >his car. I myself do not drive. I would walk to the grocery store to > >shop with a pull shopping cart. I helped him when his walking wasn’t so > >good. I made him do his physical therapy exercises each day. I made sure > >he took his Prednisone on schedual. If he needed anything, I did all the > >chasing around to get it. Nobody from his family would come around and > >see if he needed anything or would bring him anything. Yes they did visit > >my husband in the hospital and brought get well cards. All I got was hell > >from my inlaws about how I am caring for my husband. I would hear my one > >sister-in-law ask me are they sure it’s MS. I would say 2 doctors and the > >Neurologist had said yes. I was even accused of making my husband check > >out to soon from the hospital. My sister-in-law wanted my husband to milk > >the insurance for exta time in the hospital. She thought he wasn’t ready > >to come home. I think a person can sometimes recover better at home with > >the help of their family. We were given a choice of staying an extra > >night to recieve the last round of Solumedrol in the IV or doing it in the > >out patient department. My husband chose to go home and come back for the > >last treatment session. He didn’t like the hospital and missed having the > >dog by his side in bed and being home with me and our son. I would get > >blamed that the dog and 2 cats we have are the cause of his illness. To > >date there is nothing that says pets cause MS. The same sister-in-law > >would accuse me of not taking good care of my husband. She’d see him > >walk with a limp and think he’s severely sick. My husband isn’t back to > >100% normal. That is just one of those things caused by MS. I have > >finally accepted my husband has MS and could have other attacks in the > >future. I wish my inlaws would accept the MS and stop acting like he’s a > >invalid and shouldn’t do some things. I think a person should everything > >they are capable of doing. This makes the person feel usefull. > Hi there, > I’m the one in my family with MS. I have 3 boys and 1 very supportive > husband. Being the one that sees things from the other side of the fence, I > feel certain that if i didn’t have the kind of understanding support from > my family, my condition would be much worse. Guilt is such a major part of > having MS. I hate the fact that my responsibilities are put onto my family. > However, it is only temporary and i make the most of it in the good times. > Listen, you hang in there and you continue on with your husband as you have > been. I know it’s gotta be hard for you, but the respect and love that we > feel for our loved ones is absolutely indescribable. I can’t help but think > that the burden on them is 10 fold what we’ve been saddled with. There > aren’t a whole lot of people out there that would stick it out like the > wedding vows promise. I admire you and hope the best for you and your > family. Hang in there girl, nothing but good can result from your > sticktuitiveness and obvious love and concern for your husband. > Debbie Dockrey
Response:
As u will read-I could not agree more strongly. But I did this of this. For years I have been a provider and caregiver in a different way. her incredible assistance is long term reciprocity though I think I am in the debit column. Gerry Gerald Gold Department of Anthropology York University, North York, Ontario M3J 1K3 CANADA tel. 416 736 2100 [Th. 11-3:00 except for a lunch break] res. 416-225-8760 [early evening only] Dictated entirely with IBM VoiceType Dictation under OS/2
Response:
> The same sister-in-law > would accuse me of not taking good care of my husband. She’d see > him > walk with a limp and think he’s severely sick. My husband isn’t > back to > 100% normal. That is just one of those things caused by MS. I > have > finally accepted my husband has MS and could have other attacks > in the > future. I wish my inlaws would accept the MS and stop acting > like he’s a > invalid and shouldn’t do some things. I think a person should > everything > they are capable of doing. This makes the person feel usefull.
There is an awful lot of guilt involved where MS is concerned. I don’t know why this should be, but it is very common. The person with MS feels guilty about being a burden on others. The spouse of the person with MS feels guilty about being unable to do anything effective to help. The family of the person with MS often seems to expiate their guilt by denial, often taken to quite extreme measures. My father in law, for instance, went so deep into denial that he really believed that his daughter did not have MS. I am not a professional in this field, simply one who has been married to MS for over thirty years, but I fear that you have to accept your in laws. One day they may come to terms with the problem, but in the mean time you and your husband are on your own, I’m afraid. You may find it possible to subscribe to the rather dormant newsgroup alt.support.disabled.caregivers. Best of luck, and may your god go with you. Robert Tusler, Surrey, England rtus…@cix.compulink.co.uk http://ourworld.compuserve.com/homepages/Robert_Tusler
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> are > you allowing the other to have an independent and meaningful life > apart > from that of being a perpetual caregiver?
Gerry One of the things I find difficult is that as I get older I get odd twinges of aches and pains. If I were not able to look after Julie then she fears that she would have to go into a home, and any aches and pains on my part are therefore a threat to her. So she tends to be unsympathetic. I do tell her about this occasionally, although she knows it already, but I think the threat is too deep for her to forget about it, although she is not really conscious of it, if you see what I mean. Robert Tusler, Surrey, England rtus…@cix.compulink.co.uk http://ourworld.compuserve.com/homepages/Robert_Tusler
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Robert Tusler wrote: > ….If I were not able to look after Julie then > she fears that she would have to go into a home, and any aches and pains > on my part are therefore a threat to her. So she tends to be > unsympathetic. I do tell her about this occasionally, although she > knows it already, but I think the threat is too deep for her to forget > about it, although she is not really conscious of it, if you see what I > mean.
Robert, That’s a very perceptive analysis of a difficult situation. My partner and I have been there, and I’m still trying to understand it. Although at this point Robin is not a "caregiver" in the usual sense of the word, he is a very high-energy guy and I rely on him to get things done when I run out of steam. When he is hurt or ill, instead of being caring and sympathetic, I get angry! All I can think of is how I will have to do all of the things he usually does, in addition to my own tasks, and take care of him besides. I try (with limited success) not to be too surly, but I have been totally unable to muster any genuine sympathy. I simply haven’t been able to change the way I respond. Makes me sound like a pretty sorry excuse for a person (which may, indeed, be true) and I really feel terrible about it. I think much of my response comes from the same kind of fear Julie feels (although the consequences, for me, at this point, are much less frightening). Most days, I go to work and come home, and that’s about all I can manage. But I still feel like I should be able, when necessary, to pull up my socks and work until the work is done. If that means doing my work and his too, well, you just do it, that’s all. I haven’t yet come to terms with the fact that I can’t do that any more. If Robin can’t do his stuff, it doesn’t get done. It makes me mad. And projecting this scenario into the uncertain future (which I try not to do) scares me to death. And Robin (poor sick, hurt puppy) gets it. Poor guy. Teri — Teri Spevak email:te…@wrq.com http://ourworld.compuserve.com/homepages/teris/ %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% % % % "Personally I’m always ready to learn, % % although I do not always like being taught." % % % % – Winston Churchill (1874-1965) % % % %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
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