Frustration with friends and family

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bloggymom

Member
I was diagnosed with MAC and Norcardia... I am not able to keep up with life due to the intense IV treatment and fatigue. I admitted to friends and family that I need help... help caring for my son and keeping up with my house. I have gotten pretty much NOTHING. Instead of helping me, my family weighs me down with THEIR "issues and problems" rather than giving ME support. I am not asking for much... someone to clean the bathrooms, hang out with my son so I can have an interrupted nap.

I texted a good friend and all she wanted to do was gossip, moan and complain about her life. I don't need that right now.... if ever.

My husband falls asleep within a hour of getting home in the evening. I have to put my son to bed, get the dogs into their beds, lock up the house, clean up supper dishes AND do my two evening IV's. I took a small nap last night and asked to be left alone for 30 minutes. They woke me up 10 minutes before I wanted to get up. I was mad to say the least.

My family wants me to solve their problems. I have enough problems of my own right now to even attempt to solve theirs. They text me with their issues all throughout the day and if I don't respond they say I am not being supportive or that I am being selfish. I am ready to scream. I even had someone get sick at my house and I had to care for them.... I had just come home from the hospital the day before. All of a sudden I was playing nursemaid while fighting fatigue and drug side effects. Something is wrong with that situation.

I had a family member say that I am too strong and independent. I am too tough. What am I suppose to be needy and whiny?? Will that get me the support and help that I need??? Seem weird after I specifically said "I need help".

How do you deal with people like this??

I take good care of my family and I am a good friend when I am not fighting this much health stuff. Is it too much to ask for them to help me out and be supportive of me just for a little while?? What happened to life being a two way street?? It is time for a little bit of kindness to come my way. (sorry if that sounds selfish or rude).
 
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Aboveallislove

Super Moderator
I'm so sorry you are facing this. You aren't being selfish or rude. You need help and asked. Now you know their response, so I'd suggest a different approach. Have a heart to heart with your husband and explain you cannot do this and that you understand he is tired too, but that you'll have to hire outside help if he is unable to take care of things in the evening. Or ask if he has more energy in the morning to do things? My husband is exhausted at the end of the day but always does 2 loads of laundry, another load of dishes and nebulizers in the morning before work. Don't threaten, beg, give extra chances, just say matter-of-factly that you've asked for help but unfortunately your family and friends have not been able to help and that he too seems to tired to help, so there is no other option. And then do it, even if money is tight. Stop cooking. Order delivery. Call a local Church and ask for help. Something else will have to give because your health depends on it. OR ask the doctor to put you in the hospital so you can get the rest you need. I'd also tell the family/"friends" that you are sorry they have having struggles now, but your health has taken a turn for the worst and that you need them to work out their own problems. They come to you for a reason--don't give them it anymore. You can't change them but you can change what you do. Hugs and prayers.
 
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bigstar

New member
If i were you i would act like a spoiled child. I would not cook. Order out. I wouldnt do dishes id ask my kid to do it. I would go and sleep and if theyd wake me up id fall back to sleep. I would make myself my priority! Let others say whatever they want! Do your own thing! Do as many things as you can not more. Take some time! You need it. Dont nag. Just dont do what you cant.
 
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bloggymom

Member
They bothered me with trivial things even while I was in the hospital. They couldn't deal with the littlest issues without calling me or texting me. I was ready to throw my phone from my 9th floor hospital room window. My mom called with household issues that I needed to solve for her and my husband texted me with work issues due to lazy employees. So overwhelming!!

I have tried acting like a spoiled child and they called me out. They said I was being too demanding and narcissistic. I can't win!!!
 
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Aboveallislove

Super Moderator
You cannot change how anyone else acted; you can only control what you do and how you respond. No one can make you answer a phone, read a text, or respond to one. No one can make you make a meal, clean a kitchen, etc. You are sick. Go back to the hospital if you need to and don't take your phone or indicate you will call 1x a day for an update. Tell the nurse/staff you are not to be disturbed. Don't argue, debate, nag, but calmly respond that you are sorry they feel that way but that you need to take care of yourself now and that you love them to much to argue. Just keep repeating calmly until they go away.
 
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windex125

Guest
fustration with friends/family

Aboveallislove said:
Hang in there. I truly KNOW family dynamics are hard to change.
Click to expand...
You are describing my life to a tee. My husband was never a big help, I wld have to pick up my son at sports, school, while I was infusing, as he wkd double shifts sometimes. Friends all want me to hear their issues. I can't stand it. I do not text. Also screen my calls. They always tell me oh you look so healthy. so what does that mean? I've made changes but it took a lot of time - Good Luck Pat P.S why did you have to chg yr. name. I do not see alot of the reg. names I was used to ?
 
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bigstar

New member
You have to change the pattern make them get used to it. They say you look healthy. You say im tired. They say cook. You say im on ivs. Turn your phone off while at hospital. Make them go your way. Dont take no for an answer!
 
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Julie7

New member
Jeez, if you lived near me I would offer to help...make a dinner, watch kids etc. I believe in karma. I have an awesome ziti recipe I make neighbors during hard times, even if I don't know them well. Maybe have a friend organize short term support? When one of my mom friend's son required surgery, we used this online tool to sign up for dinner deliveries, she got everything she needed for at least one month. People should step up and help.
 
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bloggymom

Member
Julie7, I don't have friends near me to help with that. They all disappeared a couple of years ago when I couldn't participating in their mommy adventures. As soon as I became "unfun" and got tired too often they wanted nothing to do with me.
 
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dream2live

New member
I think it's time to do a family intervention, even if it takes a psychologist to be part of it. Godspeed on getting the help and/or the point across to your family.
 
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Printer

Active member
Love:

Your husband would be AFRAID to go to sleep if he had not done everything that you wanted him to do.

Bill
 
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Printer

Active member
Bloggymom:

I was dx with CF 25 years ago and until today, I never heard of NORCARDIA. I have MAC and having read about NORCARDIA, my heart goes out to you.


My family has no clue what MAC is until I tell them it is, a non-contagious TUBERCULOSIS. They never heard of MAC but they all know about tuberculosis. Try to find a more descriptive name for NORCARDIA (or furnish google printouts).


Good luck,

Bill
 
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Blue

New member
When I came home on IV's (with 2 little ones ages 3 and 1) I looked into a home health company that would come in and do cleaning (dishes, laundry, bathrooms, vacuum) and cooking.

There is also a company called Full Circle (www.fullcircle.com) that delivers fresh veggies/fruits and even meats, dairy..etc. You can customize what they send weekly or and cancel at any time. They are organic, deliver local food and in most places they will deliver to your doorstep. You could also start a mealtrain (www.mealtrain.com) and have friends and family sign up for a day to feed your family.

Enroll your little one in daycare/preschool a couple days a week.

These things may not be options for you long-term (as they aren't for us either) but short term help during this time is crucial. Maybe you don't change everything, but decide what might give you the most relief and make that change. You need to do what it takes to get better. If these things become too much of a burden financially, maybe your husband will realize that you're in serious need and step up a little more or even encourage other family on your behalf.

Last time I was in the hospital I asked all my friends and family if they wanted to help and what days/times would be best for them. I then organized a calendar of the day and time everyone said would work for them. I tried my best to have each person only doing something once each week to respect their time (and so they would volunteer next time I needed them!). I forwarded each person their day/time and also told them where they needed to be and what they would be doing and it worked great! My husband was even on the list, he had kid duty solo twice a week. I only had about 6 other friends and family, but that was enough to have someone with me EVERYDAY doing something. And the burden was shared, so it didn't feel overwhelming to anyone (but me :) the organizer).

Even if you had 3 people you could make this work. It will take being organized and a little strict with what you need.

That's all I've got. I'm sorry your struggling. Good luck fellow CFer...
 
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Deb

Guest
I went through the same infections and it is not easy. You need to explain to your family that your health comes first. You HAVE to get over this. For their sake they need to learn to pick up the slack. What will they do if you are gone and they can't depend on you. It's sad but they need to look at that side. Allowing you to rest and get healthy will assure that they have you around in the future to take care of them.
 
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bloggymom

Member
Thank you to everyone for your advice.

Deb, you are right. This infection is not easy. I have been sleeping alot lately. I sit in the chair and I fall asleep. I took a short nap last night before bed... even if it was for only 20 minutes was wonderful (I had to get up and put Kiddo to bed).

My family is still not cooperating. My son is a different story. He is picking up the slack for me as much as a pre-teen is able. The rest of the family is still dumping their issues on me. I am doing my best of stop them.

They don't think that this disease or the infections that go along with it could be "game ending". They have this idea that I will be around all the time to deal with their "stuff". My son gets it. He insists that I rest throughout the day. He takes good care of me.

I have made the decision that I am done doing nice things for people... they just take advantage of me. Do they do nice things for me?? NO!!! I just need to be selfish and take care of me (and my son).

Friends or no friends and no help from family.... I am still going to fight this... and win.
 
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LittleLab4CF

Super Moderator
The main problem is you don't look like you have a terminal chronic wasting disease. An entire culture has grown up without the wind whipping them in the face. Like Peter Sellers in "Being There" so many people have been denied a tactile world where we can feel the warmth of human hands, wrap around or be enveloped by another person. Everybody is isolated by our technology. People are in love with glass, I think. The glass windows of our homes, the glass windshield and windows of our SUV's and now gorilla glass on our IPhones and Androids. We are so self involved that it takes special training for young adults to socialize in person. If every topic starts with "I", how on earth do we get past detached monologues voiced in empty space from cluttered lives? Have you tried driving your car through the house? Maybe cut yourself really badly or take a hammer and beat your other hand into mush. Once you are sufficiently pathetic, maybe by capping one of your knees to show the whole insolated world that you mean it when you say CF is affecting you. If only we could vomit our lungs, or pancreas out for display, maybe somebody might get the hint. My plan, I am going to just die. Then who gets the last laugh?
 
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