11 replies to this topic

[Dee]

I just wanted to know if your spouse or loved ones sometimes do too much to help you out? Do they sometimes seem to pretend that you are perfectly normal?

For example:

The other day I mentioned to my husband that I really should wash a few windows, I went to get dressed, and when I came out he had been washing windows. Bless his heart, he is so eager to help, but sometimes I have to do these things. I need to be useful and busy and it is too easy for me to get lazy. I tried to explain this to him, but I think I might have hurt his feelings.

Sometimes I really need help to do something that I didn't need help to do last week, sometimes an easy project can be difficult for me, sometimes I can accomplish something that I didn't think I could do. I have good days, I have bad days. It must be so confusing for him.

I often think that sometimes my family just doesn't dare talk to me about this disease.

This for me seems to be a difficult conversation to initiate with them.

Any ideas?

Does anyone know what I mean?

[Tim]

Hi Dee, this is a very good Topic Starter and wouldn't it be great if
everyone would post here.

I have tried to post here three different times now and every time
I start, I end up deleting it. I've thought about what I want to say and
to be honest with you, there is just too much to put into words.

Over time, it got to the point that I needed help with some things.
Mowing the yard and trimming the shrubs was a big one. It frustrated
me so bad that I was having problems taking care of this chore. I always
liked having a well groomed yard and didn't like for it to get all over grown.
After I started using o2 24/7 it was impossible for me to take care of it
any more. I know some folks still manage to mow their own lawns but I
couldn't take the fresh cut grass due to allergies and I was just so SOB it
scared me. I had to learn to wait for help.
That's not something I was use to doing. I had to depend on my Son.
He was 16 at that time and always had other things that had to be taken
care of first. He never understood until recently why I couldn't still do it myself.
I fixed that problem as soon as he moved out by moving into a condo where they
take care of the grass and all maintenance.

Other things came on slowly. I would try to clean the house and do some
laundry while Dew was at work and when she realized what I was doing,
she started doing it all in the evenings when she got home from work.
I still try to sneak some past her but she stays up on it. She says I need
to focus on my exercise and taking care of me. She say "You worked all
your life and you deserve to take a break". I must have told her a million
times that it doesn't hurt me to help out. We do get into some heated
discussions about it from time to time but she still refuses to listen.

She also wants to do all the shopping because she doesn't want me out
by myself trying to lug everything around. I put my foot down on that one.
We compromised and I now go with her to shop. Maybe I don't go alone
anymore but I go.

It has taken a few years for my kids to understand my illness. We had alot
to learn. They now understand that this is a chronic disease and can be treated
and maintained. I keep them informed about the good and the bad. We rejoice
and we cry but we do it together. We are a Family and where I come from, that's
what Families do.

I try to stay as active as possable. I exercise and play with the g.kids, I take fruit
to my Dear mother-in-law, I go hiking with my wife and I fight for my right to survive.

[eyejustam]

Wow! You too? We are all people with the same basic needs and desires regarding our loved ones. We need to give as well as we take. We need to take as well as we give too. That is sometimes very difficult to do between two parties who are passionate about one another. God gives to us. We give to God. It is better to give than to recieve. Turn that around. For one to recieve from God he must give. If all are trying to give and no one takeing that can also create a block. I must force myself to recieve blessings from Susan and she must do the same at times. A gentle talk with the other person is at times necessary to keep the flow moving. It too can become stopped up, so to say. It works both ways good people. I believe that as we care for the needs of others we stay open to show the reverse. You folks are great!! John

[eyejustam]

I have a hard time not jumping to do everything. I know John needs to do things. It is my nature to ease the pain of everyone I love, in any way I can. Please don't see yourselves as a burden. That breaks my heart. Helping to take care of my husband, my parents, my kids and my friends IS NEVER, EVER SEEN AS A BURDEN. It is unconditional love and respect. If mine and John's positions were reversed, I don't think he would see me as a burden. Even though I would think that I was being a burden. Before John and I got married, we both asked ourselves "do I love this person enough to wipe their butt for the rest of their life if it came down to it?" (sorry to be so blunt) The answer was and is yes. We have been married almost 19 years and the answer is still yes. I took care of my father-in-law for the last 3 weeks of his life, and even though he and I didn't see eye to eye on most things, I never felt that taking care of his every need was a burden. I know that he was loved and well taken care of in the last 3 weeks that he lived. So PLEASE, PLEASE, PLEASE, don't see yourselves as a burden. Don't be afraid to ask for help with anything. When you are used to being the one doing the giving it is really hard to be the receiver. My hat is off to all of you.
Susan

[Trudy]

Wow! What a great discussion! I read your post this morning, Dee, and have been following the discussion throughout the day. I just didn't know quite how to word what I wanted to say.

Susan, your post has me crying. Thanks for posting your view. I guess I often have the fear of being a burden, even though my DH gets upset when I feel that way. So often I find myself saying "I'm sorry." And this frustrates him, and he always reminds me that I'd do the same for him if it was the other way around. And I surely would, but somehow I think it would be even more difficult for a husband to let a wife "take care" of him, especially when he has always been the breadwinner.

I am so sorry, Eileen, that you don't have someone to help you out and keep you balanced. I too want to hang onto all the independence I still can have, and I have a problem admitting if it's too hard for me to do. My family, on the other hand, sees what happens when I overdo while I often deny the fact. Anyway, they do keep me balanced, but I can still be stubborn. My kids wish I would ask for help more. A while back when I was so sick I had to ask my daughter to take me in to the pulmonologist, she told the doctor, "I know it must be bad, because she asked me to bring her in." It did kind of open my eyes to see the family's side of it, because I could see how good it made her feel just to be able to help in some way. I think our family may often feel helpless to take the disease away that it does them good to be able to help when they can. Yes, they can be over-protective, but then we talk about it. I don't always win... They just tell me it's because they love me and want to keep me as long as they can.

I think my family is still in the learning stage, trying to figure out what this disease really is and it's limitations, etc. Tim, that's wonderful that you can also cry together. I can cry with my DH, but I try too hard to make myself look strong in front of others, even my kids. My kids though can often see right through me...

On the other hand, I need to do what I can. Sometimes even on days when I don't feel so well, it gives me a sense of accomplishment just to take a Clorox wipe and clean off the counter or the bathroom sink or something. I'm still adjusting to not having the house spic and span, leaving dishes in the sink sometimes, etc., until I feel better. And even when I do feel better, it's still tough to be the perfectionist I used to be.

I think I'm finally going to post this... After deleting, rewriting, blah, blah, blah...

The BEST to you all!
Trudy

[eyejustam]

See! I told you so. We all feel like we need to be independent and we do all that we can to remain that way. There is still a time when we just have to admit that we do need help too. Pride is good to a point but it should not kill or cripple. Our loved ones need to help when they can and we should allow that too. There needs to be a balance.Give and take as Needed. Thanks again!. Yes! some times I believe I'm being a burden to Susan and that is a natural feeling from folks who have learned to be responsible. OK,OK. Enough already!! Let's just work together and agree that it needs to be both ways. John.

[Dee]

My first thought here.... wow.

I had tears in my eyes as I read what you all expressed so well. It is difficult sometimes to express things in the written word, but you all did it so well. Hearing from you Susan gave light to both the feelings of giver and receiver. I appreciate your honesty and your different points of view.

I guess we need to keep our feeling of independence as long as we can. We all lose some independence as we age, it is something everyone faces, it's just that our circumstances force us to face it prematurely.

Being independent makes me feel that I am still in control and not the disease.
I guess I will try to express myself to my family as the opportunity arises, and I will try to be a better receiver. My husband was smiling when he was washing the windows, but not when I tried to explain my feelings. I should have just given him a hug and said thank you. Smiles are priceless.

I'm sorry Eileen that you are alone at home. This is a heavy burden to take on alone, emotionally and financially.I wish I could be there to help.
You must get a wonderful feeling though from your work. It is so worthwhile, so important to be able to share your knowledge.

I know that our value is not in what we can do, but in who we are, but we seem to all agree we need to have that feeling of accomplishment. I suppose we have to explore different ways of obtaining that feeling that are easier for us to do.
I was just thinking that even a smile can brighten someone's day , now that's an accomplishment.

Take care everyone and thank you for sharing..

Dee


P.S. There always has to be an "I told you so" in every group, John.

[Jane M. Martin]

I am in deep awe of every one of you, not only for what you do to get through each day and support those you love, but in the moving way in which you're expressing your feelings. Thank you, John and Susan, for contributing the viewpoint of a married couple. This is an important discussion. Chronic illness can put a tremendous strain on relationships and I know that many people will read this and be helped by your openness and your courage.

Group hug!
Jane.

[eyejustam]

Jane: Just what did you expect? Duck sauce?? We're with ya!! John.

[Trudy]

Communication is so important. Sometimes I think we can get overwhelmed with dealing with lung disease and can often forget how difficult it is for family members also. We need to allow them to unburden their fear and anger along with us. But each personality is so different, isn't it? Some may become over-protective while others may keep their feelings inside and try to deny there is a problem just like we do sometimes. They're afraid to believe it's true, because they don't want to even think of the future. I try to tell my kids that I may even live longer than they do! We never know, do we? I think that education is so important, not only for us, but also for our family. The more we all know, the better we all can cope!

Trudy