Mothers and Fathers in CF Care

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Kanake676

New member
I have to make a long drive for an ENT appointment tomorrow and my
mom offered to come with and help withe the driving.  Now, I
didn't ask her to do this, but it is a great help to me.
 She's kind of always been like that with my CF care, always
there, quietly understated in the background, but a big help and a
big influence on how I took care (and take care) of myself.
 My dad on the other hand, didn't have much to do with my
CF care.  When I still did manual RT he did the clapping at
night and brought me to a few doc appointments, but other than that
I don't remember a whole lot of involvement (with my healthcare).
 It was mom who found ways to encourage me to remember by
pills, who made appointments, who kept a medical journal etc.<br>
<br>
I was wondering what others' experiences were in this regard, and
if either of your parents seemed to take the dominant role in your
care as a child?  Or, if you are a parent, does one of you
seem to be the dominant caregiver when it comes to CF?
 
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JazzysMom

New member
My Mom was always more involved. When I did treatments right after dx (which didnt last long), My Mom did them. I dont ever remember Dad doing them tho that was 30 years ago-LOL! Mom took me to my checkups & we always made a day out of it. Dad came to visit me in the hospital etc, but other then that he was usually working. Most of the reason he wasnt involved is because my Mom was a stay at home Mom & Dad worked 14 hour days for himself so if he didnt work, he didnt get paid. He was always there emotionally tho. My Dad passed away just before I turned 17 so sadly I dont know how he would be with me in my adult life. I actually think he would be a better support than my Mom since Mom is great only when she does have to face the reality of CF! Last year when I was terrible sick & in/out of the hospital, although I spoke with her 3 times a day, I couldnt truly tell her how I felt or what I thought because it upset her!
 
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Abby

New member
In our house, it's definitely me, the mom that has the dominant role in dd's cf care. DH does what he can, but his job takes him away from home a couple of nights at a time and it just naturally falls to me. He tries to make it to most of her cf appointments. He has freely admitted that the whole process of keeping medications, neb supplies, doc appts, etc. is completely overwhelming to him. I have finally grown to understand and accept that and give him responsibilities like breathing treatments, cpt when he is home to give me a break from it all.
 
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julie

New member
My husbands father walked out on him, his brother and the marriag shortly after the diagnosis... he just couldn't handle it I guess. He still can't really handle it. So it was my husbands mother and grandmother that were big in his care. He use to love going with his grandma, and she use to love to take him because they'd go out to Coco's for lunch afterwards and she was always amazed by how much this little boy ate.

His grandma still loves to take him out to eat, she is amazed by how much he can sit and eat at once.
 
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JazzysMom

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




His grandma still loves to take him out to eat, she is amazed by how much he can sit and eat at once.</end quote></div>



Isnt it funny how it makes a Grandmother feel good to see "kids" eat! Even the ones without CF! LOL!
 
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Jane

Digital opinion leader
In our family we pretty much share the parent tasks for cf care. My husband and I both take the boys to clinic appointments. I set up the nebs, he sets up the pills. When they are on IVs, he does late nights, I do early mornings. We take turns staying with kids when they are in the hospital.

I am the recordkeeper though, the one who coordinates appointments, prescriptions, meds therapies etc. I keep the master book of records.
 
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skh

Guest
In our family I am the one who is the main caretaker. My husband has come to some of my daughter's cf appointments and has made sure the meds and treatments are done if I am not in town. Otherwise, I am the one who takes care of Abby. We both work but I am not involved in anything outside of work so I am home more. I prefer to be the one to take care of Abby, I have always been very close to her.
 
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Allie

New member
Ry's parents pretty much split the care of Ry. They took turns taking him to appointments, his mom would fix his meals and enzymes, his dad gave him CPT, they both stayed and visited him him in the hospital. HIs dad was a lot more involved then it seems is normal...
 
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thelizardqueen

New member
My mum took the active and only role in my CF life when it came to my parents. My grandparents also helped out whenever possible. My dad closed himself off to me and never took any kind of interest in my life - CF or otherwise. My parents split when I was 14, and to this day I only see my dad at Christmas, and only talk to him on HIS birthday. He doesn't even know what day mine is, or just exactly how old I am. My stepdad though (bless his heart I love him) helps me out whenever possible though. He's kind of like the dad I never had but wanted, but with a friend kind of twist to him.
 
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Kanake676

New member
Thanks for all the replies.  It's interesting seeing what
other people have experienced.<br>
<br>
Sue, I agree with you about being the main CF caregiver parent
bringing you closer together.  I know I am much closer to my
mother than my father, and I can't help but wonder if that is one
of the reasons.  I have so many memories of my mom helping me
out, very fond memories that are fun to look back on!  There's
no real direction to this comment, just supporting your point I
guess. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Beth

New member
Can you imagine a world were dad took kids to doctors appts!!!! I'm sure there are dads out there that take there kids to appts. I just remember the experiences with my dad and how he wouldn't remember what the doc said two minutes after we left or would forget to ask a question that my mom would stress to him before we left the house. It amazes me some days that he could even get dressed and to work on his own<img src="i/expressions/face-icon-small-happy.gif" border="0">. I am finding the same to be true with my fiance. He is a great man but just doesn't pay enough attention some days. Men!<img src="i/expressions/face-icon-small-smile.gif" border="0">


Beth
 
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anonymous

New member
I have always taken on the role in Coy's care. Cory's dad couldn't handle the diagnosis or the care and ended up using it as a "sypathy plea" for himself. Currently, I am in the background role and try to allow Cory to stear the way. it was a challenge to get to this point for both Cory and myself. I finally stopped going to Cory's appointments which helped him initiate taking control of his own health and decisions. I still voice my "opinions" when I see something going right although, I am very cautious with my wording to make sure that Cory still always feels in control. Of course, the doctor and I also have a great relationship. If I see or sense something concerning, a little email from me prompts the doctor to make a "check up" phone call directly to Cory. We don't have as many problems with this now that Cory keeps in contact with the CF nurse on a daily basis by email.
 
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anonymous

New member
As the mom of a son who has CF it has also fallen to me to deal with taking care of him. My husband is always there for anything major- surgeries,etc and visited in the hospital but I did the day to day stuff which is really how my son and I like it. We always make a day out of checkups- eat out. On the other hand my husband is way more involved with fund raising- he is a businessman and has just accepted a postion on our states CF board. He seems to get ill with me when I dont help in that but its just hard for me to ask for money. I guess our roles have worked for us for the most part. Susan
 
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izemmom

New member
Just wanted to say "welcome, Tami!" I'm psyched that there's another T A M I on this site! Hee hee! (Spelled the right way and everything!) And, my husband and I share Emily's care pretty equally. He is the dad who does everything! Dr. appointments, haircuts, trips to the store with the girls. I'm a lucky woman!
 
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