Hi, Cecilia.

My mother's Parkinson's Disease and Dystonia have not only been HER diseases but my father's and mine as well. While my mother certainly suffers the most, she does not suffer alone; it is a different pain and loss that we each endure. Illness and medications have changed my mother in all ways, including her personality, and, therewith, our family.

While it seems that you have made up your mind, I nonetheless suggest that you go to the MS section of this web site when you have a few hours of time one day and just read through the discussions, questions/comments, etc. exchanged between MS patients and also with and between caregivers. It will give you valuable insight, I'm sure, into what the disease is all about, how it progresses, and even what caregivers deal with as well.

I wish you and your love well,
Iris

Thank you, Iris. It is good advice.

I am a member of two MS groups here on DS. I do read them sometimes, but should- and will- more often.

I fear a changing personality more than I do physical debility. I can't seem to find anything specific about cognitive changes other than 'brain fog' and things like that. I'll keep hunting.

Thank you all for your kind responses. I wish you well as you walk your roads!

Cecilia

I'm not full-time caregiving, but I have seen glimpses of it and know how difficult part-time care is.

I guess the thing I would say is this:

you can't be everything to everybody, not even one person.

I guess I would look at the future and see if you can imagine you having help, either from his family, or being able to afford help.

If you jump in, can you see his family getting set in their minds that they don't need to do anything at all?

it's easy to think that people will help, but most people on here will probably tell you that it's them and them alone. even in large families, it's usually just one child caring 100% for a parent.

I'm not saying this is disuade you. I'm saying it to help you see all the possibilities.

Probably the ONLY real certain thing I learned while caregiving is that it is impossible for me to do IT ALL as everyone expected. NO matter how much I did for those I cared for, there was always someone calling me to complain that I should have been doing more, and I think in their high ideals, they actually pictured me feeding my care-ees grapes and fanning them. Did any of those people help me? heck no. lol.

If I had it to do over , I would have prayed a whole lot more about it than I did.

Good luck.

Hi my name is Sandy, My husband of 15 years has MD. I knew that he had this when we merried. He to could walk and take care of him self. I had real good friends ask me are you sure you want to do this. My first husband passed away of canser. Took care of him for 3 years.
Now 15 years later, my husband is in a wheelchair and has been for five years.I am his Caregiver. It is not easy. It is hard work. I love him with all my heart. Sometimes I feel like I give and give and do and do. And I am tired. I have even had the thought to leave. I wont. Just make sure this is the life you will want to live. And make sure that if it is, that you find time to take care of you too. This is hard for a caregiver to do, at least it is for me. God bless and pray that it all works out for you,

Wow.. so much info.. I hate to add to your plate here.
Good you're thinking ahead.
There is no easy answer.. it comes down to how much you love him and how much you want to take on... it may be hard to go back to being friends now that he's proposed. .. (how will you feel dating in front of him...if you try to go back.. or cut off contact with him..)

My sister has MS. She is in her late fourties, and has had it for more then twenty years. A lot will depend on his type of MS, and how fast he's progressing... relapsing/remitting goes through long spells of normal, then some spells of not normal.
My sister worked as a medical PA, and ran a clinic until two years ago.. She did very well. Now, she is on her feet, walks with a slight limp.. she is having some confusion and her handwriting and sentence structure is gone.. but all in all is very well.
She just got married a year ago! To a nice man who is taking very good care of her...they travel all over the world for his job constantly.
So his case will depend on his type, how long ago he was diagnosed, how well he responds, and how severe his regressions are...
There are a lot of progressive treatments out there, and MS can really turn on a dime.. good or bad.
Maybe you should talk to his Dr, or talk to some other people with MS to get a feel for it.
Ultimatly, it will probably come down to your love for him, your relationship...and what you can live with (or without)
Hope you find what you need..
HUGS

Hello, Walking. I'm a newbie to this support group and am jumping in with my two cents worth. My husband of 17 yrs developed severe rheumatoid arthritis four yrs into our previously happy marriage, and last year was diagnosed with bipolar. Although not really progressive or fatal, both have caused significant changes to his personality and he is no longer the person I married and truthfully I don't like him very much most of the time. I have not had much enjoyment in my marriage for quite a while. Admittedly your situation is different b/c you know him with his illness, whereas when I married my husband he was a healthy virile younger man who has changed into someone very different. I could never advise you what to do because you may indeed be cut out for the caregiving life, but it gives me pause that your previous husband was abusive and your prospective husband lives with significant challenges. Do you enjoy living with difficulties? Can you accept possibly living with someone who eventually becomes a patient with little resemblance to the husband you married? I know he's kind and understanding and possibly you're craving that after being married to an abuser; should he be your husband, or should he be a good friend? There is so much to consider. It might work out terrific, no one can predict. My heart goes out to you as you struggle with this decision.

Hi Bingo,

Thanks for responding. This is weird- my ex-husband had rheumatoid arthritis and is bi-polar too. And then he started drinking. (That's when the emotional abuse started- 10 years into the marriage. He was pretty great before that.)I know some of the things that you are going through, and send you my love.

Do I enjoy living with difficulties? Hm. I think that I am less interested in outward things and more interested in inner beauty. This man is the most beautiful person I know and we bring out beauty in each other.

I know that it will be rough. But I decided that I will have more regrets if I spend my life without him than I would if I roll up my sleeves and stay. I've checked with family and friends to get their opinions about him (ie make sure that I'm not seeing something in him that isn't actually there), and they all think that he is wonderful.
He is gentle, and I want that.

So thanks; I appreciate your concern for me. It is very kind. But all relationships have hardships, and if it gets physically very difficult but he is a good, kind, gentle person, then our relationship hardship will be the physical part- not the nurturing part. And I'm less concerned about that. And he is a counselor and will help to make sure that I'm getting the time and help and counseling that I need along the way. I think that it will be hard, but beautiful. : )

I signed up to join an MS caregivers support group today and yours was one of the first messages I read. My husband and I have been married for 17 years. He was diagnosed with MS about 10 years ago. It has progressed to the point that he uses canes or a wheelchair, takes several medications daily to help combat extreme fatigue, muscle spasms, balance problems, pain, cognitive problems and depression. He has bladder problems and uses a catheter. I'll be honest that I miss the man he used to be - even having a healthy disagreement and discussion, but that is no longer possible because the playing field is no longer even due to his cognitive problems. I feel guilty complaining because he certainly did not ask for this. I love him very much, but it is difficult watching his deterioration and frustration and knowing he is not going to get better. This is one of the most difficult decisions you will ever have to make and that is why I felt compelled to respond to you and tell you our circumstances. I don't know the answer that is best for you, but I wish you the best in whatever decision you make.

Thanks, Zaz.

Yup... We have canes and chairs, some urinary issues, hands that are shakier, legs that are weaker, fatigue, some cognitive stuff too... Every time I read these posts I realize that *it will get worse*. I am such an optimist by nature that it always surprises me. I don't usually notice the illness much, but he's started referring to himself as 'handicapped' in a self-teasing way.

Sometimes I think that I must be crazy to do this.... Other times I am sure that I'd be crazy not to. There is no simple answer. All relationships are complicated and tough. There will definitely be times that I regret it. But then I think about myself sitting by myself in some apartment in some other city, having left him behind, and I feel deep loss. Pray, and hope, and visualize and prepare.

(I should say, too, that he is a trained Life Coach and a big believer in counseling. So he's already talking to a great therapist, has offered me one, and will have no problems with our seeing someone together if we want / need to.)

Can I ask: what kind of cognitive issues do I need to be prepared for? I've looked online and can't seem to find specifics. I am less spooked about the physical changes than the mental ones.

Cognitive changes can be anything from confusion about time ("Didn't I already eat breakfast?") to, sad to say, personality, mood and expressed feelings. There are sometimes downright deliberately hurtful accusations. When you know someone well, and have a long relationship, you can often (but not always!) let the hostility and complaints 'roll off'. But when you're tired, and stressed -- and you will be -- it's very very hard to listen to your well-loved friend or family member making totally irrational demands, or blaming you for not understanding what they want. The most promising thing you've mentioned in your posts is that your friend has financial resources. If you go ahead and decide to make your commitment "official and binding", be sure that you both understand right from the get-go that if a time comes when you are feeling ill or stressed or abused (and yes, it can even become physical as well as psychological), that you reserve the right to remove yourself from the scene for a break, after making sure that his needs will be taken care of as well as possible.
The reality is that even the nicest, sweetest, most insightful person can be worn down by disease and cognitive change, and begin to act like a resentful, demanding child. If it happens, you will realize intellectually that it's the disease talking. But you are also a human being, and repeated exposure to abuse from the person you have placed at the center of your life can be almost impossible to take without having it erode your sense of well-being and confidence.
I too have been in an abusive relationship that I got out of finally; and right now am providing significant care to a life-long friend (not a romantic relationship -- more of a "Kate and Allie"/divorced moms raising kids thing), and even though we've laughed ourselves silly thousands of times over the last 47 years, there are times right now when I'd like to just walk out of the hospital room and not come back.
Right now you have the option of a 'sort-of-known' possibility with your long-time friend and love; and a universe of completely UNknown options that you can't even imagine. I can certainly understand the pull of sticking with what you know rather than doing what looks like walking away from a responsibility and a potential focus for your life, and walking into a total crapshoot of unknowns.
Just be sure the ground rules are understood in advance by BOTH of you.
Whatever happens, you and your love are in my thoughts and prayers. Good luck to you both!

BetsyR has done an excellent job of describing the cognitive changes that may occur in MS. You are correct in worrying about the mental changes. That is why I say my husband and I can't have a reasonable disagreement because the playing field is no longer equal. Reread BetsyR's paragraph, "The reality is that even the nicest, sweetest, most insightful person can be worn down by disease and cognitive change, and begin to act like a resentful, demanding child. If it happens, you will realize intellectually that it's the disease talking. But you are also a human being, and repeated exposure to abuse from the person you have placed at the center of your life can be almost impossible to take without having it erode your sense of well-being and confidence." I think this is the worst part of the disease. The caregiver takes the brunt of the anger and frustration and while you may understand it is the MS, it will take its toll on you. I hate sounding this negative, but I believe this is the part you must really think hard about. If you decide to stick with it. it is essential that you have time to yourself, and you both have a counselor to talk to separately, as well as together. My husband and I started counseling last year and it certainly helps. I found that in our group sessions I tend to hold back because I don't want to hurt my husband. In the individual sessions, you can be open and cry and the counselor can help you with suggestions for coping. I do want to say that we have good times also. My husband can have a sense of humor and make me laugh. The best times of our day are usually in the morning when we lie in bed or sit and have coffee. At those times, I'm thankful for being together and for the blessings we do have. My best to both of you.

Zaz and Betsy, thank you both. I am touched by your honesty about what you experience. I am so grateful.

Though I know better, I find myself wanting to think, 'That won't happen to me.' But I don't actually believe it. I am just hoping that everything will stay as it is.

Fortunately, Ted is a big believer in counseling. He has seen someone for years and years and has offered to get me started with it. He's asked that, should we ever need it, that I be willing to go to couples counseling. So that is good.

The money will help. I'll be able to afford to hire people when I need to take breaks. A bigger challenge, I suspect, will be actually *doing* it. I gather from these posts that the ill person starts to feel dependent on the caretaker- clingy and resentful at the same time- and that caretakers start to feel guilty about needing anything at all. I think that I will write a letter to my future self about the rules of the game based on what I've learned here: I HAVE to take care of myself whether or not I feel like it. Even if I have to force myself, I will have to have coffee with a friend (her house, or at a cafe) every Saturday morning, for example. I'll have to set up 2 or 3 weekends away per year. It sounds like this kind of a thing is necessary, and not an indulgence. I'll have to read fiction, not just medical journals. I can set up a second bedroom of my own as a kind of haven where I can have an oasis of rest, and make it beautiful. I can go for walks around the farmette with the dogs. I can go to church. I've written things like this to myself before, and they have been powerful reminders of things that I once knew from a self that was clear and alert.

Am I crazy to be doing this? The thought of my sweet Ted becoming verbally abusive is overwhelming. I was married to a man who was often cruel and abusive for 22 years. I can't go there again. And he is 12 years older than I am: in 10 years, I'll be 57 and he'll be 69.

My biggest fear is that our friends will stop visiting us and that I will be his only social contact.

You are my sisters. I am deeply, deeply grateful for what you've shared.

Cecilia

Here is an idea. If he has enough money, let him hire a caregiver. You have your own place and be his friend, girlfriend, confidante, etc. Why do you have to marry him? You can still give him love and support. Then when you need to, you can go home and rejuvenate. Don't marry him because you have a guilty conscience and worry about what people might think of you.

I'm sorry I'm not more positive about this, but know you are in my prayers and I wish you the best no matter what you decide.

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

A typical day was getting up, doing my work and heading to Mom's to care for her & her cousin. I had to do whatever it was that they needed: cook meals, be certain that they had baths, be certain that they took their meds; take them to the grocery store so they had some social time and do their laundry with their assistance. Then try to have time to sit & share conversations of memories that I frequently heard over and over and over. The isolation came from not being able to spend as much time with my husband as we would normally do. When we did find that time wither I would be too tired to be a companion or the telephone would ring with a ploy to get me back to Mom's.

What emotions do you feel?

My emotions ran the gambit from being happy that I was helping two people who I dearly loved to being angry and bitter that they insisted on taking over my entire life.

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?

In the very beginning it was relatively easy to balance things. But as their health declined it became more and more impossible and I began to suffer total exhaustion.. When I was able to take a day off I spent much of it sleeping. As things became much worse with their health, I found it necessary to take their Social Security and combine it to hire help because I simply could not carry the load any longer. The time does come and there is no way to avoid it. Just be wise and do it sooner than wait till your own health is beginning to go downhill.

Is it really not possible to have a life of your own when being a late-stage caregiver?
In the beginning one can have a "life of your own." But at the person in need of care progresses (& MS does progress) there are many things you can do, even together. They do have medications that can slow the progress of MS and he must be certain to take them faithfully. But without adding paid help to assist with bathing, dressing and physical exercise, you will lose your own identity and life. Sorry, but these are the real facts. It will eventually become necessary to place him in a facility where he can receive the necessary care when it become more than you can handle, even with help at home. But then you will need to visit daily, but with no real schedule, to be certain that his needs are being met. You will also have to check his skin for areas of breakdown from not being turned. But you will already have become accustomed to this from his care needs at home.

Not knowing how far his MS has gone, you need to know that there will be times of remission when he can get around with just a walker. With occasional physical therapy to keep his legs strong, and some proper medications, he may be able to delay that wheel chair and/or the bedridden state that will come.

Pray about this and seek God's will. It is possible that you can simply continue to be the loving friend that you both need, and oversee his care that way. Do some very deep self-examination while seeking God's guidance. You are looking at taking one an awesomely difficult and long time commitment. Better to think & pray hard first than to find out later that it is more than you can handle. That would result in two broken hearts and you have already been there once. God bless you & guide you.

Zazgirl and BetsyR you both have hit the nail on the head and not just for MS but other medical issues also. Yes I do love my husband but I love the man I married, is that the man I live with today? well deep down I know he is in there but when he is tempered because something in life did not go his way I have to wonder. The man I married would be angerd with the man I am married to now, he would tell him to wake up and deal with his life and not be let the circumstances control him.

You have pointed out very important topics and I agree hiring a caregiver and just being the friend/love sounds more appealing... boy I wish I had the option for a caregiver to take this on and I could just be the wife I have to think we may not keep nicking away at the foundation of our marriage (I am affraid will crumble before this is all over).

My brother is getting married soon for the 2nd time and I have to wonder why enter into the ties of marriage if children are not involved (my own opionon) I look at people who are in love and wonder if they really know how bad things can get, its not my husbands fault he medical issue but what is his fault is how he handles it and yes I do take 50% of the blame I cound handle and respond to things better too but with no training and being emotional invovled in this its hard to see what hinsight is.

Its funny my dad asked me tonight (love my dad) what exciting things are going to happen tomorrow? I asked him what he means and he laughed and said my life has so many challenges he wonders each day what new event or dr appoint or panic attack will happen to my husband.

So I have lost my voice now for 4 weeks and my doctor has no idea why... I think the stress has just gotten to me, my husband asks me what I am stressed about... Ok so that sums it up the only term that comes to mind is selfish well and clueless. I guess when you are so wrapped up in you own issues you are blind to others around you.

You gave wonderful advice a lot of others will benefit from