Wow! I too have been trying to make a decision about whether I can be my mom's full time care giver. I feel sick to my stomach when I think about it. I wish we all had an EASY button to press when we have to make these life altering choices. In your situation it sounds like you have already paid a heavy price, if you were in a 24 yr abusive relationship, I'm sure you were the primary person taking care of your kids. I just turned my 20 yr old son away from coming back because I have too much on my plate as it is. It breaks my heart, but for once in my life I have to put ME first!! You should think long and hard before making any permanent decisions. For your sake as well as his. I wish you peace in your decisions.

Full time care giving is exhausting. You need to ask a few questions to yourself and to him.

Is he just looking for someone to take care of him ?
Are you 'in love' with him.. not just love him ? And he .. you?
Are you prepared for the amount of time and energy this
commitment will require ?
After a few years will you become resentful that you gave up your
dream ?

I would pursue my dream before committing to the life of a caregiver. Right now I have no life of my own and feel some resentment. I have been married 43 years. So we had a long, happy history to fall back on.

I will pray for you - Good luck on this difficult decison.

I think you are so wise to consider all of these things before comitting yourself to what may be years of caregiving. I have been married for 46 years to my wonderful husband who is 90 years old, 11 years older than I am, and has been fairly well until these past two years, and I am now his caregiver as he now has many debilitating health issues and is not able to care for himself. I refuse to consider a nursing home at this point, but do realize that I may have to do this if my health should fail too. Caregiving is a very difficult task and you are dealing with so many emotions with which you have not had to deal before. I love my husband very much and he is a very gentle kind person, but I admit to feeling resentful quite frequently. Our daughter is a great help to us but she works full time and is the mother of four school age children so she is very busy also. I wish you the very best in making this commitment, but please don't rush into it unless you are prepared to make a lifetime commitment. Good luck to you!

Love will only take you so far in a situation like yours. I've been there and it is very difficult day to day. You will need to have substantial financial rsources to hire help, or you will become resentful after a time. Caring for someone with this type of progressive disease is very challenging. People do it by necessity if it is a family member. Examine your heart to be sure you are cut out for this, most people are not. Good luck.

Thanks, everybody. I am drinking in all of your responses. I'm really glad that I asked, and that you are answering honestly. I suspect that the heart wants to offer more than the rest of oneself can actually offer, sometimes. And that needs to be looked at.

Here is a bit more information that will make a difference, and then another question or two. I so appreciate this!

1. My partner has inherited money, so we would be able to modify a house for wheelchairs, hire help, etc. (I wish that everyone had this option.)

2. We communicate really well. We can be honest with each other. We laugh a lot too.

3. We both feel that we've been partners for a long time already. We've been best friends for years, supporting each other through life issues, etc. We are in love, but that always fades and turns into abiding love at some point in a relationship.

4. He is older than I am too, gma. He is 59, and I am 47.

Is he looking for someone to take care of him? I don't know. I don't think so. He has cried and told me that he is sickened about the prospect of handing me 'such a horrible plate'. I don't think so.... He said that he wants to make choices that bring him health and feed his soul, and that I'm part of that.

And the questions....

What does a typical, exhausting day in your life look like? What wipes you out? What makes you feel isolated?

What emotions do you feel?

What would it take to balance things out so that your life was full too- that it wasn't all about what the other needs?

Is it really not possible to have a life of your own when being a late-stage caregiver?

I deeply, deeply appreciate all of your responses. More than you know. As far as life choices go, this one is a biggie. I chose kind of foolishly in my ex-marriage, and I won't do that again. I have self-respect this time around. That said, this is a respectful, nourishing relationship.

Thank you, thank you, thank you.

WOW! This is alot to consider. I am still naive in life, but have been a lifetime caretaker. I may be way OFF THE MARK, and certainly have my OWN massive series of issues with caretaking, but I'd like to offer some ideas.


1st: Whether you are "in-love", or just love him, ask yourself this: "If I were to turn down the offer for marriage, and he became dependantly ill, would I want to take care of him anyway?"

I believe that the "family" obligation might apply ONLY because he is already in your heart. He is family. Doesn't mean you are obligated, I just think you may be feeling that way sometimes.

ALOT of people consider the inconvience of being a primary caretaker in their home. Consider the opposite inconvienance for ONE moment...

1. If he lives ALONE, will you lose ALOT of time driving to his place to check on him etc...?
2. Are you gonna be able to say "No" to your partner if he calls you in the middle of the night with a spell?

I just think you should consider the OTHER side of the bill before making it final.

My mother was in a nursing home for nearly nine months. Saddly, the home was shoddy, and everytime I put my family on hold to go visit her, I'd have to go dig through the laundry barrels to find her clothes, change her bed, change her pot, and pull her DRAPES OFF her plug socket (FIRE HAZARD). I finally brought her home two weeks before she died. I HAD LESS SLEEP and REST,BUT I had more time with MY FAMILY. I was able to teach my kids, get MY work done, and instead of taking food to the home, I served her at the table with us. Bringing her HOME was a great advantage to my time and resources, BUT it WAS EMOTIONAL H*ll.

Just PLEASE consider EVEVRYTHING. There is not gonna be a clear-cut, easy, good or bad answer in this situation. He loves yuh, and yall are honest with each other. Talk it out, but go to the conversation armed with your facts and emotions.


I believe you ask "what would we do". Knowing what little you've mentioned and not knowing him personally...in your situation, I'd at least honor the love. You can't just NOT LOVE someone. I'd keep it honest though. Love him for HIM, and if you ever get to feeling like you HAVE TO LOVE HIM, seek counseling, be honest, and stay aware. I would most likely accept the invite. You've been friends a LONG time, you're both in love, (and probably were before he got down and out). I just can't help remembering this: To NOT MARRY him because OF his illness, is the SAME as marrying BECAUSE OF his illness. Eliminate those possibilities, and follow the heart.
**That's what I'd do**

Oh, and I have a ? Does he have other family members/friends? What would his support system be, if you were not in it?

Thanks! I'm being challenged!

There is a lot here. I'm going to stew on this for a day and then respond.

Thanks everybody. I owe you all a weekend in the Bahamas!! (Wouldn't that be amazing????)

love you,
Cecilia

Can u just give it a trail run? But even if u do that u know u can leave at anytime. Being a caregiver is a 24-7 job. But maybe u can afford 2 get help once in a while. Because it is very hard without a break. It is nice that u and him can laugh. But will u laugh when u need 2 do all of his hygiene? If he needs 2 b in a adult depends? It is a very hard question to ponder. I really thing u should think of yourself first. I know that has always been hard 4 my 2 do. I wish u luck in deciding what 2 do.

Thanks again, everybody.

I didn't write back for a couple of days because what you guys posted was a real wake-up call. I started thinking about what possibilities I'm really opening myself up to. And I got scared.

You're right- I can't give this kind of thing a 'trial run'. If I feel bad about backing out now, I'd feel even worse doing it when he was less independent. I wouldn't do that.

I go back and forth between being so, so happy with him and reminding myself that there is no way to know how disabled he is going to become- it might only be mild- to thinking about bedpans and lifts and not being able to go anywhere together because it takes half a day to get ready and his getting wiped out just by preparing for it.

I feel more informed, but I don't know how to approach making a decision about it. I have never felt so loved and seen and validated for who I am in my life. I feel like I'm Home. I don't know how to reconcile that with knowing that this disease has a cognitive component to it too.... it can make people fuzzy, have memory loss... depression will be a part of it....

I think that I have a lot of inner work to do to see how I feel about all of this. And then I hope that I am clear enough to make a decision that I'll be able to stick by later- either loss of a great relationship and his not becoming significantly disabled, or keeping the deeply loving connection, but losing his body and a great deal of my own independence. Or - worse- losing both him and myself.

How do you guys manage? How do you keep going? How do you cope with the reality of your entire lives being poured into the needs (not even the wants!) of another person?

Again- thanks for waking me up. It's been painful, but I'd rather know what I'm looking at in advance. I really appreciate what you guys have offered to me.

love to you all,
Cecilia

How I wish that I could whisk you all away for a nice dinner and some great conversation and belly laughing!

I guess - bottom line. Let your heart and your head make this
decision. You may find it rewarding to care for him.

Just know it is a huge big job.

Good luck and blessings.

Well my mom and dad were married for 48 years. My mom was in a wheelchair when she married my dad due to polio. But she was independent, worked, had me , kept the house. 3 years ago she had some strokes which left her dependent for daily living. My dad passed away last November. Now I am caring for her full time. I know of the "love" involved and I truly believe you can't really be a caregiver unless those feelings are involved. The bathing, feeding, medications can be exhausting but it is the "love" I feel for her that makes it bearable. Caregiving is exhausting. But I agree with the others if you can keep him at home it is less hard. I mean at least I am "At home". I watch tv, talk on the phone, the computer get out with friends in between chores.

Am wondering why you have to get married? I think you can make a commitment without tying the knot so to speak. Have you considered the financial costs? Insurance? If your married he may not qualify for medicaid those kinds of benefits. I've learned this the hard way I'm afraid. I think you can take care of him in the way you want without making it legal so to speak.

Caregiving is a journey so to speak. It does have it's rewards but they are personal. It's exhausting, mentally and physically but sometimes I think I would want someone to care for me too if I were in that position.

In the end you have to do what you think is right and what you can live with.

Good luck. Keep us posted.

I've been full time caregiver for my mom for 17 years and as others in this discussion have mentioned ITS EXHAUSTING. You seem like a nice person who cares about your friend and thats wonderful but if your not sure that you can handle providing the care he may someday need then quite simply don't do it. He would be better off alone in a convalescent hospital getting the care he needs than with someone who loves him but can't provide for his medical needs. You will find that even the deepest of human love and compassion can gradually over time turn into a shallow bowl of spite. Unless you are sure you can handle the responsibility for another humans care than do not except that responsibility. It will be easier for your friend to progress alone learning to cope with hiring care attendants and other lifestyle changes he will face than to get used to having you provide it all for him and then one day deciding you have had enough. Good luck to you and your friend.

I married my husband with MS. If I had to do it all over again knowing what I know now, I wouldn't have done it. I love him dearly but its not enough to get over the resentment I feel for his deteriorating condition.

You just got out of a bad situation and I am afraid your good heart is leading you to another one. You repeat the word best friend which leads me to wonder if friend is what he really is. Your future is just at the point where you can enjoy your freedom, move if that is what you want. Perhaps take six months to think carefully. If you marry him and regret it -- it will add to his troubles. And it will take you a long time to forgive yourself. Be careful.

Hi friends,

I know that it has taken me a long time to respond, but I was freaked out by your responses. But I am grateful- I was hoping for raw honesty and you are all really clear on just how huge a task you've taken on.

I am surprised to reread what I wrote in the initial thread a month ago. If I were to write it today, I'd write about the kindest most humane man I know. A miracle in my life whom I can trust absolutely - a big thing after the abusive marriage. Someone who I've secretly been in love with for a decade. Someone, too, who has some money, so we can hire people when we need to.

I'm going for it. Even with the MS, he is the best thing that has ever come into my life. There are no guarantees. But I know that if I turned away from this powerful, beautiful, miraculous wonder of a relationship- whether or not he stayed healthy- I would regret it. Even with the MS, I'll never find this again. I didn't know that this kind of connection existed! It feels like a gift from God and filled with grace.

I know that there will be regrets this way too. Big ones. Sadnesses and claustrophobia and stress.

What do you guys do to take care of yourselves? And if you aren't doing them (which is a bad idea), what do you know would help you to feel like your life is yours? I imagine that it's being constantly on-call that makes it the hardest?

I am so deeply grateful to all of you. Raw honesty is a great thing. Do you mind my asking these personal questions?

love,
Cecilia