A Message to the "Lurkers" Out There

[Dorothy Saunders]

I run a support group, so my phone number is listed on the WSA website. I am more than happy to chat with well spouses who, having reached the end of their ropes, use a search engine to locate support for themselves, and find WSA.

I received a call just the other day. Talked for quite a while with a lovely, witty woman who admitted she was isolated and depressed, after 17 years of caregiving. She's been hungrily reading our posts here, and marveled at how others had put into words feelings she hadn't been able to articulate.

I encouraged her to come to a meeting or one of our luncheons. She replied that she might feel guilty going out to lunch and leaving her IS behind. I suggested that she bring him back a carryout plate as a way of sharing the event. We had a nice chat and I took her email so that I could put her on my list of locals who get monthly meeting reminders. I felt encouraged that she was going to take a step towards getting support for herself.

Yesterday she emailed me and asked me to remove her from the list because she doesn't want to chance hurting her IS's feelings (she uses his email address)!

Well spouses like her are the ones who need a support group the most. She still feels guilty about going out to lunch after 17 years?! She's on antidepressants, and still struggles with getting out of bed. I know she means well, and it is very loving of her to want to safeguard her IS's feelings so much, but if there is an elephant in the room (an illness in the marriage), denial can be very destructive. Is she really supposed to say to her IS, "Oh, I don't mind that I never go anywhere, I enjoy being housebound with you." Is he (with no cognitive impairments) really going to believe that? Wouldn't it be better for their relationship if she acknowledged that caregiving is hard and that she needs a break once in a while? That she needs support from other caregivers? Why is that so hard to say? How does an admission of not being superwoman diminish her love for him?

If you are in her shoes, please be kind to yourself and reach out for the support that is here for YOU. You deserve it!!! Take baby steps: post here, PM someone, join a round robin letter-writing group, or take a deep breath and attend a support group. If you are reading this, you are probably hurting, and your isolation is one small part of your situation that can be cured. Do it for YOU.

[Guest]

...and do it for HIM/HER.

The support you will get from other well spouses here will give you an inner peace that radiates through you when you are home with your ill spouse and help keep your relationship warm, mutually respectful, and loving.

or so it was for me

[Guest]

I know how that WS feels. Before my spouse was DX, we did everything together. We don't have alot of family on either side, so we joked that it was us against the world. After he got sick we saw less of our family than we did before, they feel so helpless and don't know how to act around him they say. So I did everything on my own,till we reached a point that we had to get help. He hated it all, I think he still does but he puts up with it for my sanity alone. I have to work, do things for the kids, try to find a house that's better suited for him. But anything else I put aside. I would see a movie I wanted to see but I could'nt because I can't go without him. Lots of other things would come and go and I let it pass me by.

Last Friday for the first time in 20 yrs I went out to the movies without my spouse. His PCA's girlfriend came and kidnapped me, lol They had made up their minds I needed a night out and gave me or my hubby any choice. I went and after 20 min. into the movie (The lake house, a movie my hubby would have died than rather seen) I enjoyed myself. We even had drinks after. I came home and the next day the shit hit the fan. He tells me my life would be better if he was dead. I wouldn't have to do all the stuff I'm worried about. The worst part of it was he said this in front of my 15 yr old. After talking her down, I try to talk to him but he was a total ass about it and acted if he said nothing wrong. I guess my point of all this is, I'm not gonna stop doing things now that I have again. But I can understand why she is. I feel major guilt, but I also know that after doing the one little thing I've done, I'll be a much better person for everyone if I have some outside support

[Guest]

Dorothy,

Maybe you can tell her to get her own e-mail address. Then she can read and type to her heart's content.

Just a thought.... Mel

[Dorothy Saunders]

Thanks for sharing your experiences, Lilith. Well spouse guilt can be a HUGE issue. Some of it is triggered by insecure ill spouses who are threatened by their spouses having any sort of life of their own. I completely understand that it must be hard to be left behind at times, but a loving spouse should care about your happiness, and not want the illness to claim two victims. How does depriving two people of fun solve anything? Ill spouses have their own guilt to deal with, often feeling that they're ruining our lives, that they are huge burdens on us.

For well spouses, I think it often involves giving up our dreams, and that is painful to have to do. We have an idealized vision of a good marriage in which the spouses are best friends/companions doing all sorts of nice activities together (and creating wonderful memories to share in future years). And we may have been lucky enough to have enjoyed years of this type of marriage before illness struck. Taking that first step and deciding that you have to start doing some things w/o your ill spouse because you feel like you are slowly dying inside is very, very hard. It shatters the togetherness dream. But what choice do you really have? Often your choices are to do it alone or not at all. We must shift gears and create a New Normal. We have no road map for this, other than advice generously given to us by other well spouses. One poster here talked of how her IS was paradoxically giving her freedom in order to keep her close. Some of us are in really untenable situations, and the "rules" of our marriages must be completely rewritten.

I think we would all agree that if a spouse in a "normal" marriage adamantly refused to let his or her partner pursue a hobby which they obviously enjoyed, it would be a very selfish gesture. Well, illnesses can inadvertently create constraints on spouses also. I think a thoughtful ill spouse tries to keep his illness from restricting the well spouse too much. Studies of happily married couples indicate that a spouse who has separate interests and a strong sense of self makes a better partner.

[Dorothy Saunders]

One other thing: maybe well spouses have Survivor Guilt. We are healthy, and it makes us feel guilty that we've been spared from the illness, which has often struck our spouses randomly. We don't feel entitled to have fun if they can't also.

[Privatedeb]

I think this is one of the hardest subjects to deal with.
How can you find the time & for many of us with estranged family- money to pay someone to come while you are gone. Sometimes the challenge of balancing going out for an hour or two with staying home in your safe normal routine is the question. When you have to make arrangements weeks in advance, still take responsibility for all the things at home that you would normally do, deal with IS's hurt/fear/attitude and try and not feel guilty yourself---makes me question if it's worth it.
I've struggled with this issue since the beginning, when our relationship took such a drastic turn. When I lost my partner and gained a patient.
I do recognize the other side of this coin though. And would like to share my personal experience with you. Hope this doesn't get too long. You can skip boring parts. After attending the ws national conference last year, seeing all the others in similar situations, hearing comments. I have seen that dealing with every day trials, even coping with the challenges and train wrecks that are our lives, isn't enough- There are people in the same situation that are growing- enjoying- THRIVING. I actually met people that started successful business' afer the "incident". As I sat in the corner and tried to remember what I was suppose to do in public, trying to squash the panic in not feeling comfortable in a crowd. A very kind lady came over and patiently allowed me to take the time I needed to regain my composure. Shared with me her situation, and help ease me back into the group. She was so insightful.
I thought so much on my experiences there. What was the difference between the people that were reacting to every dilema, putting out fires; and those that were thriving. My conclusion is attitude, confidence, and they were still living their lives. They had lives, they had interests outside the world of care giving. I've tried this year to take a few weekends away, to get out of the situation that surrounds me. I've noticed that I'm much more relaxed with my IS. My attitude is better towards him. I don't feel all the time like I'm going to fly off the spinning world. I still struggle with the guilt- I'm still lonely when I'd like to be sharing this with my partner. But the weekends away recharge me. Allow me to find time for my favorite things. Sometimes it just a few hours, sometimes it is overnite. But I've seen the change in me. I'm sure that after 15 years you are scared to be out there. I know I was. My world had become so small. What did I have to offer. My weekends off aren't too often, but I cherish them; and I know it is good for my IS too.
I'm still alittle scared that when I truly am alone again, if I'll have the skills to rejoin life. When my brave IS isn't able to continue in this life. Will I have enough energy to make a life again. I don't want to have to start from scratch. I don't want to be so all consumed with IS's needs that I don't recognize mine also. I want to find the balance. I can't say I have yet, but I'm still trying!

[wordsmith]

Dorothy and Others,

This is such a good topic because it brings out all of those feelings of GUILT, etc., on both sides of the IS/WL relationship!

Dorothy, what you said in those last two posts was so very true! Thanks for your continued wisdom and guidance. You are a great source of comfort and strength to all of us. I appreciate what you say and how you say it.

Thanks to you and to others for your heartfelt words.

[Dorothy Saunders]

I agree that guilt in all of its manifestations is a very significant issue in WS/IS marriages.

PrivateDeb, thanks for sharing what you got out of the national conference. (NOTE: the next conference will be in NY in Oct.!) So many report how helpful it is to meet other well spouses and learn about their coping techniques. And yes, the goal is not just to survive, but to THRIVE.

You wrote very eloquently about your journey towards balance in your life. And you are so right that we have to jump through so many financial, logistical and emotional hoops to make lives for ourselves apart from caregiving that it is tempting to just give in to inertia and make no changes at all. But that route, as you pointed out, leads to depression, resentment, and burnout. Striving for balance in our lives is really the only reasonable option!

[sotiredofthis]

Yes I would certainly agree, that a caregiver must get out and renew herself / but in my situation . he makes it so difficult for me to spend time with my grandson of 8 yrs old who lost his daddy , My Is has alienated everyone away from himself . I could say if only I had known /it would have such dire consequences , maybe I would have done things differently . ; but I get so sick myself from the emotional outbursts . I have tried to explain to Is that why can't others have a life / which may sound harsh / but he would agree and as soon as ie;say my grandson would arrive , my husband would start saying inappropriate things or deny what was said / I am sorry / but all I feel right now is resentment for the situation / it is a prison . H e is I believe cognitively impaired and must not be able to comprehend the consequences of his behavoiur .The latest thing is we are selling our house / he somehow got overpaid by his disability insurance and is now not only cut off / but has to repay $34,5000 yes thousand . He is beyond stubborn / will drive unlicenced / alter his vehicle / which would have huge financial consequences on us / society if someone was injured or worse .I don"t mean to sound hopeless / but I feel dead inside and will not fight any more and now financially there is nothing to fight about / his continuous blunder with lack of insight or perhaps looking back( really bad cognitive issue,) and extreme stubbornness. well I am not sure /but This is just where I am at and it is not a nice place to be michelle

[Richard]

Bravo Dorothy, Lillith, PrivateDeb, Wordsmith, and others. You are all doing your best to carve out a chunk of time for yourselves in your caregiving, and in so doing, you can become more at ease with yourselves and your situations. This is so what the WSA is all about! Michelle, it's up to you -- give yourself permission -- you won't get it from your ill spouse -- take some breaks, to help yourself. And I hope the person who phoned Dorothy is reading this. It's OK to look after yourself, too! If you could phone once, you can phone again. Get in touch, and feel the relief that comes from knowing there's others out there who know what it's like, and who will listen.

[Erin]

This is a wonderful thread, which is why I made it *sticky*. I hope all those of you on the verge of burning out, trying to find some space for yourselves, and doing the truly selfless work of caring for a loved spouse, can find a place here.

[bill]

As Richard says you don't need permission. Particularly not from a mentally challenged individual. From where you are at it may be difficult to see but you can just take a break!!! Does IS need you there to monitor a breathing machine. Can he toilet? Even so you can find alternatives to your presence. It is just a matter of lifting the caregiver's veil from your eyes. Our worlds become so constrained that we cannot see obvious solutions sometimes.
Last summer I was burnt out, still am LOL, but my sis paid my air fare to her place (it was cheap off season) and I stayed with her for a few days. I didn't have to do anything but sleep and eat she made the meals and plans. I didn't have even the 100 and some odd dollars for air fare so I never thought about a getaway like that. Maybe you can squirrel away a little at a time and go visit a relative????
Until then you MUST find time for yourself as often as you can. It is as vital as eating and sleeping when you're a caregiver. Just announce you're taking a walk and go!!!!!! Why not? If you can be gone long enough to shop you can leave for a walk or even a movie. Insist on an off-duty time at home when you won't be bothered except for real emergencies. Say after 10pm or from 10am til noon Sat or Sun. BillF

[OldNTired]

PrivateDeb, thanks for sharing what you got out of the national conference. (NOTE: the next conference will be in NY in Oct.!) So many report how helpful it is to meet other well spouses and learn about their coping techniques.

Thanks for the Conference tip. I hadn't seen anything in print yet and missed it on the home page (calendar). If I can figure out which airport to use I can book my flight now for a $302 flight half-way across the nation. The dates are Oct 20-22 so I'll go 19-23 if I can think of something fun to do with the extra days.

[Dave35]

Hi all you ws’s

If you are lucky as I was, you will find an angel that will change your life. About 2 !/2 years ago IS was in the hospital with COPD, her pulmonary Dr, one of my favorites, came in to check IS, took one look at me and said “ you look like hell “. After more than six years of taking care of IS 24/7/365 and practicing super hyper vigilance I was absolutely exhausted, burned out and saw nothing in the future but more of the same.
After a long conversation with my angel(Dr) I started to put her advice into action.
This is some of the things she told me.

You must continue your life. Do the things you like to do.
If IS can join you, great, if not, do them anyway


Take time and days off, you can not work 7 days a week.
Care giving is work.
My IS sleeps until 10:30am to 1:00pm almost every day. I
am a early riser (about 6:00am) I now use the time before
IS wakes up to walk, breakfast with friends, shop or any
thing else I want to do. If Is wakes up before I get home
she can push a pager that rings my cell phone. I also take
one day a week off, thanks to one of my daughters
friends. She works cheap.
The point is, be creative and inventive and carve out some
time for yourself.

Have fun and enjoy life, just because your wife is ill, life is
not over for you..DON’T FEEL GUILTY, you did not make
your wife sick.


You take very good care of your IS, But, you do not have
to kill your self doing it

Don’t be a martyr, ask for help and when it is offered take
it.

Since that conversation and reading all the post on WSA, my life has changed dramatically. Both my IS and I can relate to each other with a more caring and relaxed attitude.

Wishing you all peace and happiness where ever you may find it.

Dave