Yes, everyone has had an important story to share with me, and I am incredibly grateful. They are hard to read. I wish that I could come and whisk you all away for an afternoon of silliness and laughing and shopping. Only in a small way can I understand what it's like- I gave and gave and gave to my emotionally/psychologically abusive husband, trying to make things ok... I gave until I was turned inside out, and it still didn't even make a dent and I was still blamed. It's hard to give away your life and not have that gift even recognized. (Is that kind of what you are all describing? Plus exhaustion?)

Here's a follow-up question for you guys- why *can't* you get away for an evening / day / weekend? Is it finances, or that you are too exhausted to do it? Is it that you really have to be on hand 24/7- that there is absolutely no other way to manage things for a little while while you take a break and get a sense of you being in your own life again?

One thing that I have going for me is that Ted is big on counseling. If I become really stressed one day, he'll want to talk about it. He wants to talk about everything. I can imagine that these things are pretty hard to share, though.

I'm going to set up a room of my own where I can go and have quiet and read and be alone. I plan to have it simple and pretty and intentional- no junk in there. I think that it will help. I remember that in my former marriage, my job was a real oasis. It was a quiet peaceful place where I could get away from the stress.

So I am going ahead with this. As I said earlier, I know that I will have more regrets if I *don't* spend my life with Ted than if I *do*- no matter what comes up. I could be alone in Seattle and hear that he's in bad shape- or even good shape- and regret that I was missing out on the profound connection that we have.

And since I am going to do this, what checklist should I have for things to MAKE SURE that I do to take care of myself- - - - what do I need to do for myself to stay sane?

You guys are unbelievable. I told Ted about you, and he was blown away by your generosity too. He asked me to thank all of you. As I do!

Love! Cecilia

Cecilia, and Ted,, i've been the primary caregiver to my wife of 35 years. She was diagnosed with MS over 20 years ago, and now is in the last stages of progressive . she has become totally bedridden, and has many challenges, recovering from 4 bedsore operations on her backside, has a permanent cathiter, an ostomy, and feeding tube. She has spent the most of the past year in hospitals, and nursing homes, and is now home, i get help caring for her through our state hospice organization. but it's still a full day for me, up at 6:00 am, give her meds, check her vitals, take my walk for 1/ hr, come back get breakfast, time for more meds, try to cook for the day, more meds, get ready for work, administer more eds, work a full 8 hr day, come home, to try and make her comfortable, then night-time meds. in between all this is laundry, housework, bill paying, and trying to keep my head clear. it's a major undertaking being a caregiver, with little time for yourself. it is a gradual process though, you get used to doing most tasks, which become more and more involved as his condition declines. and decline it will, there is no stopping it! As a caregiver you will have to do more and more daily as his abilities decline, don't be misled, this is a major undertaking in the long haul. Get as much help and support that you can from family,friends, community, and insurance. you will need it all. you'll also find most people will sympathize with you, but when it comes to help, expect little. people don't like to be around the bad things in life. YOUR LOVE WILL HAVE TO CARRY YOU THROUGH! if you don't have a strong basis for your relationship, you will fall into the desperation that a lot of people seem to fall into . It does sound as though your love, and friendship for each other is there, it will help you cope with things. your best thing is to organize your day, to include some me time, and be flexible. Don't get frustrated if the noon meal comes at 1 because you had to clean a bedpan, or something else needed attention, one task at a time. it's tough, but you learn to adapt. i hope you're up to the task, it's a big job, that gets bigger as the years go by. I wish the both of you well, god bless your efforts!

Jax,

Your loving and clear response chokes me up. How lucky you and your wife are to have each other.

Hearing you say that it *will* get worse, that there is no stopping it, comes as a shock. I think that I have been in some denial- that yes, it will get worse, but not become completely debilitating. It feels like a bandaid has been ripped off; it hurts to realize this, but I want to know. I need to know.

I am adaptable and flexible. I am positive and pretty generous. I don't think that anyone can honestly say that there love and friendship is enough- how could anyone know what they are talking about beforehand?- but I hope that it is. I hope that I'll be able to rise to the occasion. I'd feel ashamed if I couldn't. We love each other, and, which I think is even more important, we are fast friends.

Can I ask- how much has the MS affected your wife's cognition? It's tough to get specific answers about cognitive impairment online. And how do you personally schedule time for yourself? What do you do?

Thank you, thank you, Jax.
Cecilia

Greetings! Sounds like you and your best friend have had some open discussions and done some soul-searching together. Might I commend you for reaching out for assistance and answers. What I would suggest is that you and he openly discuss the "what-ifs" as well. It is difficult to quantify the unknowable, but what you do know about his diagnosis and likely prognosis can help you both do some planning. That can include figuring out things such as "at what point would a nursing facility be an appropriate option, if at all?" or "if we were to hire some extra support and in-home assistance, what assistance is available and how much would it cost? Can we afford it?"

BTW, regarding his diagnosis, has he been getting any physical or occupational therapies? Those can help him move through some of the bad times and teach you both some concrete strategies and skills to make life easier. He can also learn some energy conservation techniques.

Much luck and healing thoughts for you and yours!

Cecilia, my wife still has very good cognitive skills, but i say that with reservation. It depends a lot on her other physical issues and the medications that they have her on. she has been battling for years with bladder issues, infections, and issues related to extended catheter usage. she recently has been in the hospital/nursing home for almost a year for treatment of a stage 4 bedsore. this required a half a dozen surgeries and a lot of medication. at times she was on death's door. some of the doctors wrote her off a couple of times because she was almost in a comma, and they could not figure her condition out. finally we found someone that put a finger on the right treatment, and got her back mentally. now the insurance people have decided she is better off home than the nursing home(i'm sure that was economically motivated) but i do have help, and she'd rather be here with us. but as i said before, until they come up with a cure, there is no stopping the progression. it can go slower in some people, we had close to 20 years of her being fairly self sufficient, but a hysterectomy took away her ability to walk. we went downhill from there. now she is totally bedridden, and can do nothing for herself. i don't know how long she will hold on, but kidney issues loom on the horizon. so we keep her as comfortable as possible, and pray . i try to find as much time for myself as i can, i walk in the mornings, and try to get some hobby time in where i can through the day. and believe it or not, my job is a great escape for 8 hours a day. it's not easy but we adapt and keep going on a day-to-day basis. it's overwhelming to consider all of what you will be facing, and it can go quite well for a long time, but the bad things can happen quickly, be prepared. thanks for letting me vent-it helps to talk about it, Jack

Cecilia,
You ask: why *can't* you get away for an evening / day / weekend? Is it finances, or that you are too exhausted to do it? Is it that you really have to be on hand 24/7- that there is absolutely no other way to manage things for a little while you take a break and get a sense of you being in your own life again?

First, in my case it was exhaustion that kept me from going on individually after giving care to my mother & her cousin. And, yes, as their health - and now my husbands - deteriorate we have to be on call 24/7. You will find that out and you will have feelings of guilt when trying to schedule that me time as well as Ted will also feel guilty for all the care he will eventually need.

I can only suggest that you plan far enough ahead to be certain that there is enough to hire some help to give you a break. It will take more than a separate room for the time you need. Again, as I suggested to you before, contact the MS organizations near you. There may even be grants or programs that can be made available to you as Teds condition deteriorates - and it will deteriorate. You must plan ahead or you will find yourself in a terrible place with no corner to turn.

You have said that you have decided to go on into this relationship. We all wish you the best and know what you will be facing. We will be here to hold your hand when you need and maybe even offer some advice. But this decision is, ultimately, yours & Teds to make. I wish you many happy days as you share your love & friendship.

Blessings, Jeanne

Hi Cecelia,
I've read this entire thread with great interest. You've received some wonderful advice, and I'm not sure I can add much to it. I just thought I'd add a little about my own experiences.

I married my sweet, gentle husband about 23 years ago. He's 64 now, and I'm about to turn 53. He is crazy about me, and there is really nothing like being a loved wife. Many women never feel really loved by their husbands. I do.

When I married him, he confessed that he'd had "a lot of trouble with his nerves." I knew he'd spent time in mental hospitals, but I took a chance on it anyway. Well, he did great for the first 9 years of our marriage. We had babies, he worked at a little factory down the road from us and I stayed home with the kids - what I'd always wanted to do. But then the old mental illness came back. I'm still not sure of the diagnosis - but I think "bipolar disorder with psychotic features" describes it pretty well (more mania than depression). Within 5 years or so, he had to quit working but fortunately qualified for Disability. He has had an episode about every two years. The last one put him in a behavioral unit of a nursing home for about 10 months. I brought him home a few months ago. The break was a lifesaver for me! He is still wonderful and I still love him and I do not regret making the decision to marry him. But I was talking to one of our daughters the other day (still single) and I told her that while I don't regret marrying her dad, if she should have an opportunity to marry a really great guy with a known mental illness, I would probably advise her to think twice. She knows how hard life has been for me and said she probably wouldn't do it.

And you might ask, how has it been hard? A lot of the difficulty has been guilt that I have assumed that I really didn't deserve. Worrying about what people thought of us, things like that. Wasted energy. Fighting with him because I let symptoms go too long instead of getting help sooner. Unrealistic demands when his mind wasn't working right. Incredible neediness and clinginess when I was screaming inside for time alone.

In many ways, MS might be worse, because of the physical manifestations. I've found that taking a moment to refocus on love and patience helps when you have to help them with physical needs like bathing, dressing, or toileting. We've had some of those challenges in the past.

One thing you said I think shows wisdom.....You said you would probably have more regrets if you didn't go for it than if you do. In many hard decisions, the raw truth is that we will have regrets either way. I was 30 when I married my husband. I don't think I would advise a younger woman to enter into such a life, but considering your age, it might make a lot of sense and bring about a lot of pleasure and joy to both of you. Especially considering that you should be able to get help when you need it.

This probably didn't help much, but I wanted to be supportive of you whatever decision you make. We take life one day at a time and rely heavily on the Lord. If you share faith in God with this man, I think you can make it.

Dear Cecilia -
Sometimes I feel that I have a reservoir of patience and good-will inside that I can take care of my husband with love and a smile. Other times I struggle with annoyance that I am taking care of my life partner. He has a multitude of health problems, diabetes, end stage renal disease and neuropathy are the most pressing. I think that because you have made this choice, knowing what your role will/may be, your patience and good-will will stay with you most of the time. Taking care of my husband and coping with illnes is my life experience. I chose it as you have. He may have the disease, but like someone else said here, everyone who loves him is affected. By understanding that life is made up of joy and pain, it's easier to accept that caregiving is another facet. It helps me balance the helplessness of watching someone I love get progressively less healthy. So maybe this small piece of my life speaks to you and sometime in future you may pull it out of your memory. Caregiving doesn't define you, you define it. Caregiving is something we do for the people we love. It's hard, and exhausting and painful and more, but we can find a strong sense of peace that we can provide this comfort for a fellow person.

Thank you, dear Manderly. I hope that I will be able to do this with beauty. I'm shaken by what so many have said. It is the thought of it that frightens me. The facing of it one day at a time, not so much. I hope that I'm making the right decision. When I am with him, I know that I am. When we are apart (during the week- he lives an hour away) I worry about becoming something that I don't want to be, for either of our sakes.

I hate to be pessimistic, and this will be my last comment - When in doubt, DON'T!