Can't Stay, Can't Leave

I had more than one heart attack since her condition became worse She has no tremor but is 99 % dependent to move around her mental capacity is deteriorating. There is almost no meaningful conversation Talk is in bumper sticker fashion...and usually results in a small argument. Thankfully we are financially secure to have live in help for 5 days. When I'm not at home the live-in works with her from 8am to 9pm doing everything for her including taking care of large house, driving and cooking.

We want to feel free to move away from our home of 30 years into something more convenient (single level home) and to have a retirement community setting with club house activities available. She has little concentration abilities to read, draw, write (impossible), she has problem sitting through movie...and more importantly conversing.

Except for one couple saddled with a seriously depressed child we have no friends.

I wanted to test the water of life together so we took a long 4 week vacation she was good....being away helped her but I worked 24x7 for more than 4 weeks. There was no break time.

At our age we probably will have many years of life ahead and I cannot picture myself as active CareGiver for another 10-20 years.

I was visiting a nursing home recently and saw an 80ish man feeding his 80ish wife who was in a wheelchair. She obviously had a stroke. Maybe it happened only days or even weeks before...but they had their lives, they had their good times. She had no other physical needs. Of course the mental anguish exists but he was able to walk away and go on with his life whatever that was. He didn't have to "have PD" through her like we do.

She needs help all the time...at night she cant turn in bed...can't go to the toilet alone, I must get up to go to work, she cant call the living because that would wake me anyway. I havent slept one night though in years....I dread sleeping in another room.... What kind of life is that.... The live-in cant work more than 12 hours a day and I need her. I work with her in most of the common duties,,,,

My guilt prevents me from leaving and I cant stay this way.

I raised my hand "for better or worse...in sickness or in health" and I keep asking myself, "What if I were the sick one....??? Would I be able to realize that I am the sick one and my wife is entitled to her life....???? Would I be able to release her to enjoy whats left of her life without having to be my nurse every moment.?"

The rose is off the vine...the romance is out of our marriage....there is no conversation, no walks in the sun/rain, no nice words to each other, holding hands doesn't mean what it did before, sexual/physical relations are difficult at best and are not often enough. At my insistence we are starting marriage counseling to try and save our marriage with the same movement disorder therapist who treats her paranoia (centered around me).

My wife says I am always looking angry. I AM! She says she is the sick one and I'm not...she's says I have no right to be angry. We both are right.... I also have PD... through her.... her every move I duplicate or assist... I'm there for her every whim or wish.

She's also think that I am ripe pickings for another women.... and is constantly accusing me of having affairs.... yea, I wish!!!!

She didn't ask for this disease. We had a great family for so many years and we are still a close family. Thats why I'm feeling such guilt for even thinking of separation for a while.

No matter what happens she will be cared for through a medical trust set up to insure her every medical need.

I have no other outlet to vent except for a few friends who know us both quite well. They all know our situation and wish they could help...but its only those other CG's or Cpartners who know how to answer this little letter.

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You really need a vacation away, at least a couple of weeks to put things in some kind of perspective. The counseling will help, hopefully.

Our marriage has always been, vibrant, passionate, exciting. Frankly, sex with a person with advanced PD is just one more CareGiving chore to boost the very fragile ego of an already beaten down, beloved person. I don't think any of us are going to say, "go", however, a safe healthy relationship with another person isn't out of the realm of possibilities.

Beware the casserole ladies. Think there's a reason men usually don't outlive women. Perhaps they're just not built to be caregivers.

I took a vacation last fall to a place I had longed to go to and it exceeded everything I expected. I came back with a new perspective. Can you get good night help three or four days a week? We went in Jan. to two months of overnight help that saved my sanity. Since then my pwp with a med change can get himself up most times though I still am up at least twice per night.

You certainly have a lot of fellow sufferers but no one can make this decision for you.

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Are you wrong? No, not in my book. I don't feel that committing one's self "for better or worse" should equate to selling onesself into slavery. Rather, the promise of "for better or worse" requires that one do all one can to PREVENT the "or worse" from destroying the relationship.

Some more tough love:

There are more options than 1) status quo and 2) running away. There is also 3) doing something about the worst aspects of the situation so life is a least tolerable and maybe even joyful again!

Marriage counselling is very much the right thing to do, and some individual counselling is also probably in order. Further, you also need to investigate new residential options for yourselves and start creating new social opportunities for yourselves. These are tasks that you alone must handle -- your wife will probably participate some, but for the most part you are on your own.

Now, here is the part you will really hate hearing. (If you didn't like what I said so far, I warn you that this will be worse.) I have the very strong impression that you are working in order to escape from your home situation. You state that you are over 60 and you sound as though you are fairly well off. I suspect that if your wife were well you would have retired a few years ago.

As long as you are going to continue to work, you will probably not have the necessary time to devote to make your home life tolerable. Your lives have changed, and it's up to you to do some things to accommodate these changes.

Regarding the paranoia -- I believe this can be relieved by the atypical antipsychotics such as Seroquel and Zyprexa. My mom takes Zyprexa, and it's made a huge difference for her. The paranoia she experienced is now gone.

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I have felt many times that, "Is this there all is left to life?" Why me? Why have I been put into this situation? I remember in high school some of my friends wanted to be nurses. I never wanted anything to do with nursing.

I wanted to be a career woman and did become one.

I cared for 6 children while my husband spent his 20 years in the Army. Moving from this place to that and never knowing where we were going to be the following month. I waited for him to retire so we could have a life together. I waited for the kids to grow up and be on their own so we could enjoy life. After his retirement he spent his time in a bar and running with women. Why didn't I leave then? I have no idea. Maybe because we both drank and drank heavy. I waited though still not sure of what I was waiting for.

We sobered up together. We went to AA and saved our lives. And today I think we saved our lives for this? What a crock. The kids grew up and moved out. We had 7 years together with out the thought of illness, changing under garments, wiping slobber from his face, helping him in and out of bed, making sure he took his medications. They were the best 7 years we will have. I cry thinking of what we have had to give up in order to live.

So I stay. Why? I still can't tell you. I wish I could get in my car and just drive until I'm out of gas and never look back. But I think of myself as a very dependable person. I would like to think that others thought of me in the same way.

Marriage counselling. I believe in it. I believe that everyone should give their marriages a chance. I've been lied to, cheated on, left, and even forgotten about but we took another chance with our marriage. No marriage is perfect and made in heaven. It takes a lot of work.

I hope that I haven't been too bold in my ideas and thoughts. You just seemed so desperate and lonely. I do know how that feels.

I also worked to escape the responsibilities at home and worked long enough to collect my retirement. I didn't want to quit work, I didn't want to leave my great job, I didn't want to leave the friends I had at work. They were my ticket out of this house everyday. But financially I wasn't saving any money and I was going into a hole every month having to pay someone to stay with my husband the entire day.

I wish I could win the lottery. I have big plans for that money. There would be a full-time caregiver of my choice hired. I would become that loving wife that my husband married. I would see to it that we traveled and I wouldn't have to worry about the luggage and everything else we worry about when we leave home. Its said that money can't buy happiness-I'd like to show them how much happiness it can buy in our situation.

I hope some of this has helped just a little. I'm with you. I understand your feelings. The choice though in the end is one you have to make. I will keep you and your wife in my prayers.

If I have offended anyone in my words here I apologize. My only thoughts were for the Pdhusband. I meant no harm to anyone.

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Isn't this list wonderful? Where else would you find a group of people who have "been there, done that," and would so freely admit it for the sake of helping someone else who seems to be struggling. Like some of the other writers mentioned, we, too, grieved the loss of our planned future when PD was diagnosed. We got over that hurdle, but had to deal with adjusting to the inevitable losses that each new symptom brought.

Once the disease progresses far enough, then it's normal (imo) for the CareGiver to feel that he/she was also sentenced to a life of PD, since one's life is so constricted by the abilities/needs of one's partner. I've had times when I felt as you do, and have written to the list for support. The nice thing is that med changes plus counseling and whatever, have made a huge improvement. There was one time I nearly had my bags packed! For now, things are relatively good again.

I do suspect that CareGiving is more difficult for men than for women. When I bathe my husband, it doesn't feel much different than bathing my grandchildren. I thought it would be a huge step for both of us, emotionally. It actually wasn't that hard! However, I think if he had to bathe me, it would be much more difficult, somehow. For the sake of accuracy, I should add that he showers every day, but isn't able to do a thorough job, so we've thrown in the extra bath, with assistance, to take up the slack.

I can't tell you what you need to do except to say that some of the other writers have given you excellent advice. I'd say you need to do something about your living situation and if that could include built-in opportunities for a social life, that would be wonderful. I do know you are going to have a horrible time dealing with this unless you have emotional support from friends, family, and/or counselors. And you know there's always support from the list.

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I have kept your letter to answer when I had a little time. You say what most of us have felt at one time or another. It does feel as if we are suffering as much as the "patient." It is surely a family disease. You say you have a CareGiver with her during the week while you are working. It sounds as if you are expected to spend all your non-working time with her which was probably not true before the disease hit. I know your wife feels lost when you are not with her, and she is very frightened that you will not be there for her when she needs you, BUT you have to take care of you first in order to be any good for her. Have you read the CareGiver's Bill of Rights? It is too bad if she says you are selfish: You have to do what it says on the Bill of Rights or you will end up running away all together. The one thing I noticed in your letter that could probably be changed is that you let the CareGiver go on weekends. Have you considered having someone at least one day in the weekend so you can have time for yourself? As you probably know, I have full-time helpers for my husband because I just can't lift him alone. At first I felt a little guilty having someone there even when I am available, but I have found that I resent his illness much less now. I used to become frustrated and angry mostly at being tied down all the time. Now, I can come and go as I please just as I did before he became ill, and I find myself being with him more because it is my choice. Does this make sense to you? I may not have expressed it just as I wanted to, but the bottom line is that Ken and I enjoy each other more now even though I know he wishes he could go with me all the time.

Also, there are facilities that offer Respite care. One in our area is even offering 48 hours free right now. I know your wife would object, but if you need to have some time alone in order to be with her, then you have to do it. I cannot believe that you have always done exactly what she wanted when she was well. Her illness cannot be allowed to change that or you will burn out even more than you are already.

With great understanding of exactly where you are.