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This forum is a place for those caring for a loved one with pulmonary hypertension to connect. Share tips, ask questions, etc. Veteran parents and caregivers may help those with newly diagnosed children and spouses.
Checking In On All Caregivers
April 6, 2020 at 11:17 am #24225
I know that life has been a bit chaotic and overwhelming in recent weeks. Some of you may find yourselves working from home, teaching your kids at home, all while being the caregiver. It’s no surprise that so many are having more anxiety and burn-out. If you are at home trying to balance all of your tasks, what have you found that helps you?
I am a PH patient, and my concerns about getting the virus are already enough. I do worry about my hubby, who had stents placed in November. I cannot even begin to imagine the added stress when it is your child, spouse, or another family member that you are worried about. What have been your biggest obstacles?
For me, taking quiet time for myself, rather than be getting up early and drinking my coffee while reading my devotional, or maybe a warm relaxing bath at bedtime. I am a “bath junkie.” I like bath melts and oils that take me away for even a short time.
April 6, 2020 at 5:01 pm #24234
You’re so sweet, Jen. Thank you for checking-in on us caregivers.
I recently mentioned to my husband that I’m kind of glad in this situation that our kids are grown. Working from home and homeschooling during a pandemic sounds really nerve wracking! I’m wondering the same – how are those who are balancing both, doing?
I too am a bath junkie! A relaxing bath at bedtime and chamomile tea has been helping me fall asleep faster. During the day, I don’t know what I would do without my coffee!
As I was reading your post my youngest came in to tell me concerning news. He’s been asked to return to work tomorrow. He’s a mechanic and his job is part of his education through a tech program. So, I guess he’s going back. I washed one of his brother’s old Vogmasks and he promised to wear that at all times. Most of his day is spent working on cars alone in his bay and not around people, but I’ll still worry. What if the virus is contained in someones car? Agh! He’s 19, needs the experience and the money and it counts towards his education, so I really can’t tell him not to go. Please keep him in your prayers.
April 6, 2020 at 7:22 pm #24239
Oh, I cannot imagine balancing all of this, as I am sure some caregivers are doing.
Oh no, like your son, my hubby is still working, and he is outside most of the day, but some days he is in the office. It is undoubtedly a concern. I can certainly understand. Just have him wear the mask, and I am sure that his hands are already raw from washing them. My hubby has masks, hand sanitizers, and gloves. I will certainly keep him in my prayers, that is Aiden, right? You know I always mix up their names.
I am sending you mom hugs as I know this will add stress to you.
Enjoy your baths and tea.
April 7, 2020 at 2:20 pm #24258
Hey Jen and Colleen,
I know that it has been hard for my mom and I. It is frustrating because I have really been delayed with a lot of upcoming procedures and appts because of everything going on. I was hoping to get my tunneled cath line placed last Friday but there is now a delay in getting my scans and records for the surgeon to review before this even gets done. I know that my mom has had to make a few phone calls for me to see what is going on because I am just too worn out to make these calls myself sometimes. It’s a lot of work for the patients right now but also the caregivers so I really feel for what everyone is going through!
April 7, 2020 at 7:19 pm #24268
@brittany-foster I think of your mom often. You have been through so much already and more just seems to keep getting added. I’m sure it’s hard for your mom to see her baby having to endure so much. Yes, like it or not, you will always be her baby. That’s what I tell my boys. (I can see you eye roll Britt!)
I can imagine the concern and issues these delays have caused you. I’m so sorry!
April 7, 2020 at 9:12 pm #24280
@brittany-foster, I can only imagine how difficult this is for your Mom. My mom is 8 hours away, and as I told Colleen on another post, she calls me daily, some days more. She’s so worried.
With all that you have going on and the frustrations you’ve been dealing with, I’m sure your mom has that frustration, too. It must be so difficult for her to try to do what she can to help and not being with you.
I agree with @colleensteele; you’re always your mom’s baby. Thinking of you all and keeping the positive thoughts and prayers going.
April 8, 2020 at 9:55 am #24286
@colleensteele, I’ll keep your entire family in my prayers.
As for us, I’ve been praying a lot for my son with CTEPH and his wife. They both are “essential employees,” so they can’t stay home. He’s a butcher at a grocery store, and she’s an RN at a hospital with C-19 cases. More than a month ago, after being exposed, she got sick, so the hospital sent her home for two weeks. She had to take almost a month off because that’s how long she was sick. I’m eternally grateful that my son didn’t catch it from her. I’ve given both of them cloth masks. My son wears his at work, and his wife wears hers if she has to go out to get gas or something else. At the hospital, she wears disposable masks, but I don’t know what kind.
April 8, 2020 at 11:06 am #24293
@colleensteele I know she would agree with you about being her baby. Even though I’m the oldest LOL but I get what you mean. I know it was so hard for her not being able to be in the hospital with me when I had to be in isolation. This was the hardest part for me too because I really trust my mom being there and just have the sense of comfort when she is around, whether she is just there for support or is just sitting there with me while we watch TV or something.
April 8, 2020 at 11:09 am #24294
@mamabear007 I know this must be such a stressful time for you too as a mom. I remember you saying that your son was married to a nurse. I know that must be stressful for her too when thinking about what she could bring back to your son and what she may be a carrier of. That is something that has had my boyfriend more worried and stressed when it comes to my health too. As long as she is distancing herself ! But still, you can’t be too sure even when it comes to social distancing. You just don’t know what someone has or is carrying.
April 8, 2020 at 11:11 am #24295
@jenc Thank you so much for your continued positivity here and the strength that you give to so many of us daily. Your words mean more to me than you know! My mom definitely has been extra stressed about my health and rightfully so. It has been hard with her not being able to see me as often or now with me only visiting once or twice a week at their house. There are a lot of people at my parents house and therefore more chances to spread the virus or other infection. I need to be extra careful of the few people I allow myself to be around (within distance) each day.
April 8, 2020 at 11:50 am #24305
Oh @mamabear007, I am so sorry to hear this about your daughter in law. I forgot that she is a nurse. I am glad to hear that she is better and that your son did not catch it. I cannot imagine how stressful this is for you as a mom. My thoughts and prayers are with you and the family.
Your son and his wife both are essential, and that is scary. My hubby is also an essential worker, so this has been stressful. We just take precautions and pray for the best. It is such a scary time.
How are you coping? Are you doing anything differently at your home? You are the knitter, right? I remember you making something for patients before. My mom just started making masks for her community as she has the material already. She started that this week, which I am happy to hear. She has been so stressed about me. This will help occupy her mind.
April 8, 2020 at 12:50 pm #24310
Thanks, @brittany-foster, I am sure this is not easy. I know that you also have your nephew often, Brady(?), that has to be tough, too. How are you doing with that?
Your mom can join us at any time if she needs support. I can only imagine the stress and worry that she is dealing with. As you say, not just worrying about you, but every one that is at her home. She is one tough mama! I admire and am inspired by all of our caregivers.
April 8, 2020 at 3:10 pm #24318
@jenc, I’ve been coping by sewing masks. I can’t find fabric or elastic for the ear loops, so I’m improvising. Using cloth napkins and old pillow cases for the fabric and gentle-hold Scunci hair elastics for the ear loops. For the inner filter, I’ll be using interfacing (which won’t be here until next week — until then, I’ll be using old sheets).
I’ve put my knitting on hold until I’ve used all the “fabric” that I got. I think I’ve got enough for 30-40 masks, and I’ve been able to make 3 a day. Now that I can do it without looking at the instructions, I should be able to knock out 4 a day.
April 8, 2020 at 6:44 pm #24323
That’s awesome, @mamabear007. I’m sure that they will be much appreciated. Thankfully, my mom has extra fabric and supplies so far from her sewing stash, hehe.
It sounds like you’re improvising, and pretty creative, I must say. I wish that I learned to sew from my mom and aunts. I’m far from creative, minus my writing, hehe.
Take care of yourself, too.
April 8, 2020 at 7:17 pm #24332
@mamabear007 I love how creative people are getting when making masks. A friend of mine posted a video and for the ear loops she used old bracelets. Are you donating them or making them for family and friends?
Cullen has worn Vogmasks since transplant. Ever few months we buy him a new one so he has a lot of old ones that I washed for the rest of us to use. For that reason I haven’t made any masks yet but I’ve been thinking about giving it a try.
April 9, 2020 at 8:02 am #24334
@jenc she is so tough and I give her so much credit!! She usually needs the help of my sister or me when she comes onto the forums and writes her responses LOL. She has been applying via email when she gets the notification and replying as an email instead of writing on the forums (face palm emoji) LOL . I teach her every time she comes over, but she still ends up doing the same thing over and over again hhahahaha! I give her a hard time about it ! That’s what daughters do.
April 9, 2020 at 8:05 am #24335
@mamabear007 I think I should have paid more attention in home economics class LOL. We were taught how to sew a pillow and a fabric softball. I don’t even know how to thread the needle now hahahaha. There was a time in my life where I thought I could sew after my mom taught me when I was younger and I sewed my own Barbie skirts and thought I was going to be on the next “Project Runway” show LOL ! But seriously, I wish I could do this. I am sure I would learn pretty easily! That’s amazing that you are making your own though and @colleensteele I also saw this tutorial on Youtube of the masks made out of a bandanna and 2 hair elastics. It was creative and looked easy enough.
April 9, 2020 at 9:26 am #24348
Even better, @jenc, I got all these supplies for free (except the hair elastics, which I paid for). Cloth napkins, table toppers and table runners are mostly used for entertaining, which isn’t being done during this time of social distancing. All that was asked of me was that I review the products — and when my review indicates that these decorative items can be used for making masks, I suspect the seller will get many sales from people who hadn’t considered the possibility. 😀
@Brittany, even if you remembered how to thread the needle, you’d probably have to read the manual for the sewing machine to see how to thread the machine — it had been several years since I used my sewing machine, and since every one is different, I had to look at the book to see how it’s done. I never should have used my machine to stack my yarn for knitting — I probably would’ve used it more often. 😋
- This reply was modified 4 months, 1 week ago by V.R. Peterson.
April 9, 2020 at 9:41 am #24352
@colleensteele, The first several masks are going to be for family and friends (plus one for my UPS driver). As soon as I finish with family and friends, I’ll start making them for the people in my town. So far, other residents have donated at least 80, and I’d like to add to that number. The pattern I’m using is different than what most the others are making. Not better or worse, just different. Then people will have their choice of which style of mask to take.
April 9, 2020 at 10:03 am #24354
Too funny, @brittany-foster, so true! That IS what daughter;’s do. My daughter was trying to teach me about IG when I first started, and she was like, “Mom, why do you make things so complicated?”. I was taking the long way to do a simple step. I still am learning, but I do pretty well, I must say. Hehe
Your Mom is undoubtedly a strong one, and I am sure that is where some of your strength comes from. I, too, know that my Mom, although not near me, is my source of strength.
Too funny, poor Mrs. Foster, with you girls. My mom has 3 of us, so I know. Hehe
April 9, 2020 at 10:08 am #24355
Hi, @mamabear007, that is awesome, getting those materials for the masks for free. You are certainly paying it forward. I like that you are making one for your UPS driver, too. That is so thoughtful. I know that you have a huge heart of love by your posts.
I hope that you are feeling some better today.
As far as the sewing machine, we have one in my daughter’s closet that my mom bought her. We could never get the thread started, LOL It is a digital one, and my daughter and I tried and had it going once for one line of stitches, then it was back to needed to thread it. We watched YOUTube videos and all. Like Brittany, I wasn’t paying much in Economics class. That was until we started cooking.- Hehe
April 9, 2020 at 2:36 pm #24364
@mamabear007 this is such an incredible project that you are doing! I know it is going to help so many people and that your efforts to help aren’t going unnoticed or unappreciated. I think it’s wonderful to see all the help from communities that people are giving and the free time they are using to try and make a difference. It’s inspiring.
April 9, 2020 at 7:10 pm #24376
@brittany-foster, I’m just paying it forward. Two other people have already gifted some masks to me. The first two, I gave to my son and DIL, as they work in very public places. My daughter is also sending me some. I tried to explain that I didn’t need any more because I was making some. She apologized for “mothering” me, but she was going to make sure her dad and I were safe. I had to chuckle at that because she was always upset when I tried to mother her as during her teen years. Now she’s doing the same to me — and driving her own teenagers nuts by mothering them. At least she sees the irony.
April 9, 2020 at 2:44 pm #24366
@jenc the best part about the 3 girls is that we are all completely different from one another and have different personalities and needs. That usually is how it goes though, right?? LOL . We are alike in so many ways, but we all have such differences, hobbies, and growing up completely different interests and sports that we played. The amount of money my parents spent on sports for the 3 of us probably could have paid for my college education. I can’t even imagine raising 3 ! Not even 1
April 9, 2020 at 4:09 pm #24370
Oh @brittany-foster, we 3 sisters are total opposites, too. Of course, we do share a few similarities but so different. I don’t know how my mom did it. I agree, as much as she spent on us, what a mansion she could have bought for herself. She would not have it any other way, though. I am sure that your mom feels the same.
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