[angler 420]

Hello Everyone,

First time posting here, although I have been a creepy "lurker" for some time now. I have gained a lot of insight into my own 21 year marriage on this site and this forum has helped me a great deal in other areas of our marriage.

My situation is a little unique. I have gone to other message boards and forums more closely related to the subject title, but frankly I found them to be a bit whiny and self loathing and I just enjoy the overall (usually ) positive attitude on these forums.

My wife is quite ill and has been most of her life. I knew this going into marriage and was 100% committed to supporting her. She was not nearly as sick when we got married (we were both 20 years old at the time, 21 years ago) and lately she has gotten pretty bad. She has a blood disorder that causes her to be incredibly anemic, which causes MANY other health issues along the way (she had 2 strokes in her 20's, painful internal bleeding, and frequent bloody noses daily). We have had to make many adjustments in our life and our friends/work colleagues understand her condition and we have a lot of support. There are days when she cannot perform the simplest tasks, even walking up a flight of stairs can be cause her to be very short of breath and immediately tired. She refuses to stop working, but has luckily found a low stress/non physical job on Mondays, Wed, and Fridays so she can rest in between work days.

I do most of the household chores. Cooking, cleaning, taking care of the animals, etc. She likes to do laundry, although a lot of the time I have to carry it to and from the bathroom for her (we had to move the washer & dryer from the basement to the first floor bathroom as she couldn't do stairs with a basket full of clothes). I am completely fine with doing these things and hold no resentment towards her. I have told her I have some anger & resentment towards the situation, but certainly not towards her.

What I am wondering, is how do I continue to be a decent caregiver, but not go overboard and lose "myself" in the situation. While my wife has a lot of guilt around her condition and feels badly, I sometimes I enable her to be a little lazy. That may sound cruel and harsh and I sometimes feel guilty for feeling that way, but I find myself doing everything around the house, even when she isn't feeling that badly. When she is feeling really badly, I wait on her constantly and make sure she is comfortable, but I find myself continuing the pattern even after she has had treatments and transfusions and is feeling "ok" (she never feels great anymore). I find I give up a lot of personal activities for me as I don't want her to be alone and possibly need me (like I said, even when she is doing alright). She is in no way demanding of me, I take this all on myself.

This may be a little too complicated to solve in a forum full of strangers that don't know me or my wife. I think I needed to just vent a little to people that are 100% unbiased and removed from our situation.

Now that I have an account set up, you will probably start to see some other questions and concerns that I am working on, but we'll stick to this for now.

Thank you everyone for taking the time to read this and I look forward to hearing what you all have to say.

 

[AFEH]

Do you have passions that don’t include your wife. A hobby? Something you can truly get lost in and enjoy. Something creative like carpentry, photography, sculpturing, painting etc. Something just for you, just for your enjoyment. And what about sports? Squash, tennis?


We all need stress free times to ourselves. Something we can “re-collect” ourselves in. These things are much like an active therapy, a totally different change of scene for a while that helps us get our life into perspective such that we’re not so lost in the details and can get to see the big picture.



You do need to make time for your self.

 

[unbelievable]

A very interesting question, indeed. We get into patterns that form habits. In your situation, circumstances require you to be primarily a caregiver for an extended period of time. Both of you would naturally fall into the habits of your respective roles. I would think it would be difficult to suddenly switch into different roles, especially when your wife probably looks about the same from one day to the next and her appearance may not accurately reflect her actual ability.
There are probably some light chores that occupy your time but aren't physically demanding (paying bills, folding laundry, loading dishwasher?) If she looks like she feels up to it, you might ask her if she could do X while you do Y with the promise that after chores are done, maybe you both could relax and watch a movie or do something else together that she enjoys.
I may be way off-base, but I expect your frustration may not stem from the quantity of work you have to do but from the feeling you're the only marriage partner actually involved in making the marriage work. If that's the case, you just need to see her working with you a little. You need to see her doing something that shows she's interested in caring for you and the marriage. She's got a job and they don't pay her to be an invalid. She can do some things. Likely, she has just fallen into the habit of assuming you will take care of everything and assuming you don't mind. Her first assumption is correct but the second is false.
When she does help out, tell her "thanks" and give her a kiss. Tell her how much better she is at folding towels (or whatever) than you are. Women love to feel needed and they love competition. Her self-esteem is probably in the basement and she probably feels as useless as teats on a boar. Remind her that you need her and appreciate her (but this praise is best if linked to her performing some function). She wants another praise cookie, she does another task.

 

[angler 420]

Thanks AFEH,

I do have lots of hobbies/passions. I love to fish, garden, and do all my own home projects (very handy around the house with a lot of carpentry skills). I also used to play tennis but have not in a very long time.

This past summer, I only fished a handful of times and did a small amount of gardening.

I know what you are saying about re-collecting myself through stress free activities. I don't know what my problem is, but I find it hard to enjoy these times now as I am constantly worried about my wife and will check in with her many times while I am not at home. I need to get away from this behavior not only for myself, but sometimes my wife even feels "smothered" and I need to give her space.

I don't know when this happened. It kind of of crept up on me and now this is the way things are. I need to break these habits and the pattern and get back to my hobbies.

Thanks!

 

[angler 420]

Unbelievable,

Your screen name suites you well. I cannot believe that you nailed my situation so well, it truly is "unbelievable". I feel like you have been peeking in my windows and know our situation better than even our closest friends.

You are so right about her feeling "useless". That is the main reason she continues to work outside the home. She has had a couple of her doctors tell her she should stop working and collect disability, but she will have to be on her death bed before she does that. She does pay the bills as that does not require anything physical and when she is really feeling awful, I may run to the bank for her to transfer, deposit, whatever, but she takes care of the finances mostly.

I am not very good about communicating my appreciation for her and your advice is spot on. I need to do that more for her.

Thank you so much!!

I am going to implement your suggestions immediately.

 

[SimplyAmorous]

angler 420 said: My wife is quite ill and has been most of her life. I knew this going into marriage and was 100% committed to supporting her. She was not nearly as sick when we got married (we were both 20 years old at the time, 21 years ago) and lately she has gotten pretty bad. She has a blood disorder that causes her to be incredibly anemic, which causes MANY other health issues along the way (she had 2 strokes in her 20's, painful internal bleeding, and frequent bloody noses daily). We have had to make many adjustments in our life and our friends/work colleagues understand her condition and we have a lot of support. There are days when she cannot perform the simplest tasks, even walking up a flight of stairs can be cause her to be very short of breath and immediately tired. She refuses to stop working, but has luckily found a low stress/non physical job on Mondays, Wed, and Fridays so she can rest in between work days.

Your wife is richly blessed to have you in her life, by her side... this is all I could think to say... I don't feel your walk would be an easy one by any means.

Worrying is emotionally crippling.

This sounds like a good book that covers all you are trying to come to grips with here...if you click on the "Click to look inside" & scroll down to the Preface page..."what worries Caregivers" and "How to conquer worry" ...a long list of specific issues are covered.

Coping with caregiver worries (The caregiver survival series): Books

 

[Mrs. Lima bean]

I agree you seem like a one of a kind unselfish guy to take on all that but do take some time for yourself to keep your sanity. IT wouldn't be like you are neglecting her.. and like you said she is able to do some things herself. good luck to you man.

 

[angler 420]

Simply A,

Thank you!! I am getting that book this week.

There was a paragraph there in the preface that mentioned anxiety and stress can be transferred to the care receiver and result in worsening of the current condition. I have witnessed this as well as seen the negative effects it has my my own physical health. I NEED to read this book. Thank you!!!

 

[SimplyAmorous]

You know that book is only 87 pages and written in 1998, there are surely better, that was just the 1st thing I clicked on -when doing a google search...

Some of these books have some great reviews, it's always good to see what other caregivers have shared about how the book has helped them personally .... here are 2 more.....

Surviving Your Spouse's Chronic Illness: Books

A Caregiver's Survival Guide: How to Stay Healthy When Your Loved One is Sick: Books

 

[angler 420]

Thank you SimplyA.

These books do seem a little more in line with I am looking for. I have looked at others and into some online forums, but like I said in my original post, they are full of self pity and I don't find that particularly helpful.

I have some time off this week so maybe I will head to the book store and pick up a few of these (or other ones like it)

Thanks again for your insight.

 

[Darlene Lancer JD MFT]

Yes, to answer your question, you are enabling your wife - not intentionally, of course, but you two have a codependent marriage. It makes me wonder if sometimes there isn't resentment beneath the surface. She started off dependent upon you, but over the years you've become dependent upon being her caretaker/helper. Slowly you've given up yourself, and find it hard to do things on your own that you used to. I went through this in my marriage many years ago, and it took group support to regain my confidence and self-esteem. The codependent arrangement undermines the self-esteem of both of you. For instance, she could do the cooking or other chores. My guess is that you would feel guilty asking her to do something she's capable of doing. She may not want to do it, but but you need to find the courage to ask for your needs, including time for tennis and fishing, and she needs to find the courage to go outside her comfort zone when she's able. It's very difficult to change established patterns - especially if she resists. You both may need some counseling. However, if you change, it can help you both to change. I recently wrote "Codependency for Dummies" which in describes your dynamic in depth and contains a self-help healing plan. I wish you both courage on an exciting journey of self-recovery.
Darlene Lancer, MFT