Frustrated with friends and family

[LisaV]

Jane,
What you want that you wanted.... for:


-them to live as normal a life as is possible.
-their disease to be understood by people close to them.
-their need for privacy in regards to their disease to be respected by friends and family.
-their short time with us to be honored and cherished.
-understanding and concern for their stress and the stress the disease puts on the family.
-people to have compassion for our situation.
-people who can recognize and anticipate what our daily emotional needs are without having to be told.
-people to be upbeat with a positive attitude.
-people to be there for us when we need them.

That's exactly what I wanted for my husband. Additionally, because he was a grownup, he and I wanted:

-people to respect his boundaries. To let him manage his illness himself without criticism or even too many "helpful" suggestions. (And emotional blackmail really sucks bigtime - don't even think about it!!!)
-people to let him be "real" with him even if that means discussing his pain and his fears.
-people to visit him when he was homebound - particularly when I was working and couldn't be with him

We really didn't get any of the things that you listed or that I listed from family.

I suspect that the family with the kids with CF were so "out flat" that they couldn't have done much even if they wanted to. They were also worried about cross-contamination, but never had the balls to say so out loud.

For others, I think like other adults have mentioned, folks just got worn out.

Also, as he got sicker it got scarier and scarier for folks to see him (particularly the family of the kids with CF) and his own kids.

And, also, once the nieces were diagnosed with CF I think that my husband just fell to the bottom of the family support system. If it was a choice of supporting the kids with bronchiectasis because of CF or him with bronchiectasis, the kids got the support. And we were in no position to help those kids much because we were barely making it through the day ourselves.

When there's a lot of illness in the family, the family just finally doesn't have enough whatever to give all of the support that is needed.

One question that I've never been able to work out:
You say that you want the short time that the kids will be with you to be honored and cherished. What does that look like? I can understand in my gut that that means that every thing they get to do (every achievement - like dance recitals) is a real big deal.

But how do parents of other kids in the family balance making those things a big deal without making their kids feel like their second best?

I mean if we went to every one of the nieces' events, but the nieces never came to our kids' events, what do we say to our kids when they say "Why do I have to go to their recital when they never come to mine?" Especially if we're not "allowed" to something blunt like "you'll have lots of victories and events in your life (birthdays, weddings, babies, etc), but ________ has CF and will probably die young so this may be the only victory she has".

Saying something like that seems to me to just completely squash any chance of normal relationships between the cousins. It also is might not be true. Our kids could end up dead from an auto accident when they are teenagers, and as we know from listening to the adults on this forum, the nieces with CF might end up bouncing babies on their knees.

Everyone means well, but it is so hard to know how to balance things some time....

Keeping you all in my heart,
LisaV

 

[anonymous]

Omigosh Mom2brooke! I swear my mother is just like you! Last summer we were at my grandma's birthday party and I ran out to the car to get DS's backpack with his nebulizer in it, so we could quietly take ds to her apartment and do his treatment before the 3 hour drive back home. Walking back into the apartment building my mother must've have stopped everyone she saw to say "that's his nebulizer in there. He needs to do breathing treatments and have medicine several times a day" Swear to god, my mom sounded like rainman. She just glories in the attention she gets or thinks she gets from people. Quite frankly it just makes everyone very very uncomfortable.

But... My mom does care in her own way. I was horrified to hear from a friend of mine's girlfriend who's granddaughter was diagnosed the same time her daughter in law found out she was pregnant again. Every time I hear from this woman she has to say -- I have another grandchild now. And he doesn't have CF! He's not even a carrier and ---- he's a boy! All I hear is -- I've written off my granddaughter 'cuz she has cf and I've got a grandson who can carry on the family name! Liza

 

[anonymous]

Another, maybe major reason that folks just sort of dropped out was that over the years my husband had gotten really good at what we called "passing as well". After years and years of interacting with other professions who didn't have a chronic illness, he just never mentioned his - especially when he was a counselor and was counseling some one with a chronic illness (it's considered unprofessional to bring up your own issues in that situation).

And with friends and family too. He like to be the giver, not the recipient.

And he was the "come back kid". He'd been hospitalized a zillion times, sometimes comiing out so frail he could barely walk, and then he'd go into rehab and return more or less his same old self.

Anyway, he "passed as well" well enough and long enough that friends and family just about freaked in amazement when he started needing to use O2 24/7. Couldn't pass as well anymore then.....

 

[anonymous]

whoops, that last one (and this one) are me (LisaV) again. I'm at work and I hadn't signed in....

 

[Jane]

I love this topic you guys- great dialog!

Lisa,
I'm not sure how I would describe how my kids can be honored and cherished by other people, I was mostly referring to myself. My mother always criticizes why I have a special birthday for them EVERY year. I will do what I can to make each event extra special to them because it is important to me to know I've helped them have the best lives they can. I don't want to look back someday and think "I wish I had spent more time with my kids". It isn't important to me if my family can ALL attend each event, but I know I will. If other people want to join us in celebrating our victories- great. I know I can't expect everyone to feel as compelled as I do to savor every moment of my kids' lives, but I also don't want people (especially family) to criticize me for doing it.

Jane

 

[LisaV]

Geez, no, I wouldn't want to be criticized for that either, Jane. (tho' big deals with lots of people aren't the way we celebrated things, but everyone has their way of making a day special). You family criticizes that? That stinks.

Maybe we should make that another thing on the list:

-Understanding and support when I make a big deal about anything in their lives-especially goals they have reached.

(Geesh, in the last years just going for a spin in the powerchair around the mall was a big deal and warranted flowers and a treat.)

I think that one of the things we all want
--people who can recognize and anticipate what our daily emotional needs are without having to ask

is completely impossible, unfortunately. At least I know I've failed mind reading time and again (ask the exhusband). If I'm in the same room with someone I know really well, I might be able to pick up on a mood or pain level (ask the late great husband if you could), but I still wouldn't know what was the best/most helpful way to respond. Like my husband had chronic pain (all the time, lowest level was about a 7) and I could definately tell when it was getting hard for him to manage, but sometimes when he was having trouble he wanted a hug and a kiss and sometimes he wanted to be left alone so he could "center" and sometimes he wanted to be distracted. I could never guess which so it was either trial and error (irritating to us both) or more likely I would say something like "you've got that 'pain' look. It's a problem for you right now, right? Then after the nod, "Anything I can do to help? A hug? A striptease? Want me to listen to a ood vent? Leave you in peace for a while?" That would usually get a laugh and the answer would help.

If it had been a family member that I was talking to on the phone or something, I wouldn't even have been able to pick up on the pain, I'm guessing. If I called them or they called me they would have to tell me where they were in things and ask me for what they wanted. Like "Just had a really rotten day and need to vent. Got a moment?" or "Glad you called, what's up? but must warn you it's been a rotten day...".

The I know what you're feeling and how I can help without you telling me is just some great romantic fantasy as far as I'm concerned, but then (as you have figured out) I'm blunt to a fault anyway.....

take care and thanks,
this sharing between family members about what works and what doesn't is REALLY helpful.
-LisaV

 

[Jane]

Liz, It is an impossible request, I know

...but it was a wish list.



I'm sure it was an awesome spin around the mall!

jane

 

[anonymous]

Have your mom babysit for an entire weekend. I know it sounds completely absurd and a thing that you couldn't even imagine doing, but I did this with both of my parents and they really understand the impact of my son's disease. I left them a detailed spreadsheet that showed meds by time/date, how to clean and sanitize nebs, etc. as well as all regualr activites. I have to say my dad is my hero...he's the only one that I trust completely with my son. I'm actually going to Europe with my husband in April...we've never gone on a trip alone since my son was born, but because I've solicited help and trained my wonderful dad.....I'm able to have a break from the daily "CF" routine and recharge. I know as a mom it's hard to trust your child's care to someone else and you think that only you can do it, but if you keep going at this rate, you'll eventually lose steam and your strength to care for your children. Your kids will survive a weekend and you may find a new support person!

 

[anonymous]

I just love this topic. It seems the only person I can vent to is my husband and there is only so much you can say to one person without building up hard feelings. As bad as my mother can be, she is great about keeping our daughter over the weekend to give my husband and I some much needed alone time. For our daughter's first three years she didn't spend a night away from us and if we left her at all it was for no more that 2-3 hours. She is 8 now and she knows what has to be done and you can make sure my mom will make sure it is done. That is never a problem. Sometimes the best intentions on the families part though can cause the worst of problems.

 

[anonymous]

<img src="i/expressions/heart.gif" border="0">
My heart goes out to all of you guys ,I am also a mother of two lovly little girls with c.f, and i to know what you are going through .
When i first had my doughter no one would get close to her becouse she was so sick ,this is without even a diognoses of c.f they said they were scared that some thing would happen to her they were scared......then the diognoses came and by that time i had another little girl so she had to get tested.....positive again
I didnt know what to do itwas just the two of us me and my husband and our little girls at first when your in the hospital learning how to take care of your children every one wants to help and be involved but when you get home its different no one has any time for them they dont get to do what all the other kids get to do "theirs to much work to them"and everyone is to lazy to learn how to just ...just...love them......................and to them i say their loss becouse what i do know about my children just to know them is to love them. I dont feel sorry for my children I feel sorry for the realitives who dont make the effort to know them<img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[candiebar76]

I want to start off my response by asking a question. <div class="FTQUOTE"><begin quote>My daughter was diagnosed at the age of 11 (4yrs. ago) and my husband's family is very familiar with cf and my side was/is not. </end quote></div> How do they not catch it till this late? I am currently trying to find out if my 6 yr old Max has CF.

Lynsey,

People don't understand and a lot of them want to hide from it. Although it is hard for us we must just accept that from those we know. It is difficult to fathom that even a Grandparent would avoid it, but many times they want to live in the fantasy world that they don't raise these children only love them. If that makes any since. While searching for the answer to what is wrong with my son I must quote my mother <div class="FTQUOTE"><begin quote>Get your mind off of it. He looks healthy. There is nothing wrong with him.</end quote></div> Well we all know that looks are deceiving. Then she continued on to talk about his birthday like the conversation about his health was not important.

On the other hand my Aunt is a great support. She listens and responds. She was relieved when I came to her with this problem. She stated: <div class="FTQUOTE"><begin quote>I am very familiar with CF as it is one of my 'pet charities'. It is an absolutely horrible disease.</end quote></div>

The point is if you have a select group of people that you can turn to then that is your support group. The people who avoid it do so out of fear. They are afraid that one day you are going to tell them even more troubling news. Embrace those that will listen and be thankful you have them. I know it is hard to face things without having your friends and family understand, but they will never know what it is like until they experience it themselves. Give them time (I know she is 2) perhaps you can enlighten them.

 

[anonymous]

Many people are diagnosed late in life with CF, even as adults.

 

[jonandlindsay]

When my daughter was diagnosed as 6 mo. my side of the family was great.... phone calls, letters, lots of support, but we got nothing from my in-laws. There was the one phone call when we told them about Ella's diagnosis, and that was it.. for months. When my husband got up the nerve to confront his mom about it she said, "We were all waiting for you to reach out to us". Ugh... in the middle of learning everything possible about CF, bi-weekly Dr. visits, trying to figure out correct enzyme dosage, learning how to do CPT on an infant, and dealing with a baby that was nowhere near sleeping more than three hours at a time, I was supposed to be reaching out. On top of that, for the next year, whenever we talked to anyone on his side of the family they would always talk about how they were so devasted and upset about the situation, and expect me to support and comfort them.

We've really tried to move past all that, but it's really hard. That was, by far, the most trying time in my life and I felt like they abandoned us. Okay, I should say that they live rather far away from us and we don't see them very often... we are financially unable to visit them, and they like to "vacation" places other than with us, so they haven't actually seen Ella in over a year. Every time anyone on that side of the family sees pictures of Ella they always say "She looks so healthy. Just like a regular little girl... she doesn't look sick at all". Obviously they don't really know much about CF or they wouldn't be so surprised by her appearance, and this ignorance hasn't been due to a lack of effort to educate, on our part. I almost feel like they are only believing the worst of the worst about CF and don't want to get close to Ella because of what might be down the road. That, to me, is so selfish on their part... and what an amazing little girl they're missing out on.

The other thing that has been hard for me is a lack of response from friends and family when it comes to fundraising. I am very active in the Great Strides walk and have had amazing support and involvement from hundreds of people, but there are still members of our family who have not contributed a cent. I realize there are many worthy causes out there to support, but all we were really asking was $5.... it wasn't the amount of the contribution, it was the show of support... but people seemed unwilling to do even that. I try to put myself in their shoes and think... what would I do if the roles were reversed?.. and I can't imagine not helping someone that asked. This may not be the best attitude to have, but I kind of feel like there's a line in the sand... either people are with us or they're not, and if they're not, I don't have the time to waste on them... too many other important things....

I think I've just resigned myself to the fact that people just don't get it.

I've relatively new to this sight, and let me say.... I'm so glad you all do get it. Thank you.... you are all amazing people.

~ Lindsay
Ella's Mama

 

[anonymous]

My husband has gotten to the point if someone makes a comment about how healthy our son looks, he'll say "gee, well the genetic tests from the Mayo clinic must have been wrong"

I'm also so disappointed with relatives when it comes to the Great Strides walk, this year we had several relatives who registered, sounded really gung ho about fundraising they could do in their communities and then didn't bother to show up or even raise money. Liza aka ratatosk

 

[anonymous]

First time I am posting or even on this website. My son Aidan is 21 months old and was diagnosed at 8 days old. I am so sorry that many of you do not have the support of family and friends. I am so fortunate because we have a huge support system. They try to get it as much as they can, they learn his treatments, they wash their hands, both of my sisters stopped smoking, my mom quit her job to watch him so I could work. It sucks Aidan has CF but he is so lucky to be in this family.
And also - I work with Handicapped children and really people all deal with issues, some far greater than CF. I just thank god we have treatments for CF and hopefully Aidan will be a grandpa someday!

 

[anonymous]

If your daughter does not cough and looks healthy they are not going to say anything. Once she starts to cough sounding sick, I hope they ask you a few questions. Perhaps they have no idea? Maybe they do not know what to say? Some people keep things private between families and do not like to be reminded.

I would kindly ask them why they never ask you how your daughter is feeling? perhaps if you get into any fund raising for Cf ask them for a donation. Then you will see if these friends are true or not.

Take care
Risa

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

My sister-in-law comes over for the "obligatory" holidays like Christmas, Easter, thanksgiving etc... and brings her sick kids. The kiddo's are constantly coughing and oozing green nastiness, though she claims it's just "allergies". She refuses to get her middle child tested for CF (she exhibits almost all of the symptoms of CF) and gets pissed off if we suggest it. My husband finally had to tell her not to come unless she has a Dr.'s note saying the kids are not contagious. It's kind of harsh but my son is worth it.</end quote></div>


I can really sympathise with you here. That is just sooo bloody insensitive and selfish. Allergies my arse! She sounds like she has got a real problem. It isn't harsh at all and your son is DEFINITELY worth it.

Good luck!

Charlotte<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[anonymous]

this is a little off onto another tangent but some what related to your post from the way I view it.

When I was little, my parents would often say "we are going out to the organization" The organization was CF. I did not quite understand what they were doing but I knew they had good intentions but it would really bother me (as I was about six yrs old) as I felt so different when they were going out to the organization (they did not say CF). Later on, I accepted that what they were doing was a great thing but in my mind I felt so different and I hated when my uncle would say to me, "how do you feel" with a tone of concern. As an adult I can appreciate the sincerity but as a child I felt different and felt it was a big Reminder that I was sick.

Everybody acts so different to sickness and it does not mean that people are insensitive. People in general do not react unless you explain how to react. Most will react to you the way they feel you want them to react to you. When you explain how you feel and how they can support you and if they respect and follow your wishes then you have a good friend.

Many people are so caught up in their own lives these days it is hard to find good sincere people.

As an adult, I have been through some serious situations (two transplants) and I feel my friends look up to me for advice and they seldom seem to feel sorry for me. If anything, they look for sympathy in their own situations. I am like the Dear Abby. When I was sick there were only a tiny amount of people who really understood how to react to me. Most of my good friends said things to annoy me so I hardly bothered talking to them. I did not have the patience to explain how to talk to me.

I just look at people's intentions now and consider the source. You can kind of see who the selfish people are and who the I do not know how to help you kind are. I say give everybody a chance and make sure before you move on and find other friends
Risa

 

[ejwiegert]

We are in a slightly different situation, but similar none the less. We've found out through genetic testing that Abby due in August will have CF. My husband's parents are certain that the amnio results are completely wrong or that if they are right, she will just be a carrier. We've tried to explain that two CF genes means that she will have CF, we'll just have to wait and see how severe the symptoms are when she gets here.

Got to love this...they understand that at least on of them is a carrier of Dave's CF gene, BUT they keep going back to..."no one in our family had/has CF, how are we carriers?" We try to explain that to them and we are met with resistance. I've pretty much given up.

It is like talking to a brick wall. I can't imagine what it will be like when they come to visit and she isn't showing any symptoms immediately. They'll say, "see...she's not sick." They think we are nuts for turning our lives upside down to give Abby the best start for a great first year. We don't regret the changes, but it is hard.

My mother is incredibly supportive and understanding, but she's always been that way and she is a nurse...so she has a perspective that they don't.

What I think that people don't really understand is that from what I have learned, CF children don't grow out of it, they grow into it, which is heartwrencing at the least.

I'm just glad I have you all. I have to stop typing, I'm getting choked up....seriously.

Em

 

[anonymous]

When there's a CF diagnosis, it's a grieving process. All your hopes and dreams for you and/or your child have changed. We went thru the anger, denial, etc. phases. I myself had an inkling of doubt -- DS passed his sweat test with flying colors and everyone kept telling us that it was the "gold standard" of testing. But genetic tests (2) showed homozygous delta f508. But even then, I would think -- he had to have two tests and both times they told us they didn't get a large enough sample for genetic testing. Being that double delta f508 was the most common mutation, maybe they just THINK that's what he has for mutation. My mind went round and round on this for months, until DS cultured pseudo. Sorta brings it home. My dad's side of the family has accepted the CF diagnosis, but several aunts still make comments about ds outgrowing it. But they're in their late 80s, so I'll give them the benefit of the doubt.


No one in our family has ever had CF -- we've looked at family history records that go back to the 1800s. Might have been one case (I was looking for people who died young) -- and that was my maternal uncle who was stillborn. Otherwise, Nada, nothing, no sign.