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  • Family Caretakers

    Hi, everyone! I am here because my daughter was dx'd a few months ago with IC and it has been a rollercoaster ride so far. She lives with her significant other and her two children, 9 yo and 14 mo old.

    She was in the hospital for 4 days and then an additional 3 days within an 8 day period the first of July. Extreme pelvic pain that could only be brought under control with narcotics. Her uro at the time tried to prescribe meds she could use on outpatient basis but her insurance would not approve them. She has had the initial surgical procediures (I don't recall the name of the proc), was put on Vesicare and something to keep her from getting up 20 times a night to urinate. I don't know all the meds she's on. She is scheduled for the initial procedure to install the MedTronic device on the 18th. Right now she is doing instillations a couple times a week.

    I am here because I need support to support her. I am 63 yo, single, and am doing my best to help out with my GC, and some household duties and am at her house from about 9 am until 8 pm. I am totally exhausted when I get home. A lot of it is due to the heat wave we've been under in Oklahoma, with 46 days so far above 100 degrees. I have no A/C in the car, so I stay until the sun begins to set in order to have a cooler ride home. Once it cools off here, I will be able to leave earlier to come home.

    I sound so selfish, huh? My daughter takes naps in the morning for about 3 hours, unless she has a dr. appt. and then in afternoon as well sometimes. and spends most of her time in bed. She can't tolerate certain positions, like sitting in a chair because of the pressure it puts on her pelvis and bladder. She is 31 yo and sometimes I wonder if she is able to do things she says she can't and it is making me resentful. Again, selfish. My health is not the greatest either, and when I get fatigued, I am less able to be compassionate. I love, love, love my granddaughters and really don't mind caring for them at all. It fact, it fills a void in me. I feel like I am on a rollercoaster of emotions, too. I do usually have the weekends off and time to recoup.

    I am also a gardener and have to have time to take care of my garden before I go to her house in the mornings, so it is always a rush to take care of my house, run errands for her on my way to her house, so that I am usually tired by the time I get to her house.

    I am a researcher by nature and by my former job - paralegal. So, I am trying to gather as much info as possible to understand this disease. But the psychological aspect as a caretaker is wearing on me. The information is vast and I get confused just reading it all. I don't think I am retaining it like I should. My daughter's husband is getting frustrated, too. He thinks she should be doing much more than she is in terms of taking care of the children, housekeeping, cooking (they eat tons of fast food). He is fast becoming resentful, too.

    Please, we are a family in dire need of help. There are no IC support groups close by. Any suggestions?

    Susan

  • #2
    caretakers

    Hi Susan,

    First, please don't feel guilty for feeling frustrated and tired. It's very hard to be a caretaker.

    I am an IC patient, but also a caretaker for my husband, so I understand where you are coming from.

    Having said that, I suspect that your daughter can't do more than she is doing at this time. IC is a painful, often, especially at the beginning, debilitating disease, and it can be very exhausting.

    You said you tend to research things, which is very good. Have you read all the information on the network, about IC and what it's like, etc? You can find that on the home page and in the forums. If you, and maybe your daughter's husband read that, perhaps it would help you both to get a feel for your daughter's experience.


    I was wondering why your daughter is going to have the Interstim implant. Has she tried the IC diet,(very important and helpful-it's on the network and can be printed out), and the many other treatments available, such as medications and instillations,(meds. directly into the bladder)?

    Has your daughter read the info. on this network,(forums, etc)? It's wonderful that you are helping her so much, but she also needs to be her own advocate. She might like to join us and talk about her experience. It's always encouraging to talk to others who have the same disease since we understand how she is feeling, and the feeback is so helpful.

    It sounds like you are having care taker burn out. Is there anyone else who can help your daughter, even for one extra day during the week, so you can have self time?

    I wish I had more to offer. I'm sure you'll get many more responses with good suggestions.

    In the meantime, keep posting and venting. It helps a lot. And keep in mind that as your daughter finds treatments that will help her, she will get stronger and more able to take charge of her life.

    Laurie

    Comment


    • #3
      If she would do better with medications on an outpatient basis, her physician can help her with an appeal to her insurance company if she has medication coverage. It could be that she would still be okay if you spend a few hours less with her each day --- maybe when she is up after a nap you could go home for a few hours.

      She's very fortunate to have you.

      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Thank you for support and understanding. The heat wave we've had this summer has not helped anybody either. Nearly 50 days of 100 plus temps. Due to the heat, and lack of AC in my car, I have waited until 8 pm or so to drive home. Once we get a break in the weather, I can leave earlier (hubby gets home at 4 pm so I can leave a few hours earlier. That will help a bunch.

        I needed to vent, and you all have explained that the way I feel is pretty normal in these circumstances and I needed to hear that. Thank you!

        The instillations have not appeared to help my daughter, which is why she is going to the Interstim. She is on a benzo; one pain med, Elavil and Effexor, Elmiron, and Vistiril and others that are OTC herb and/or mineral supplements. I think the reason, or at least one of the reasons that she is going to the Interstim is that she doesn't want to be on the pain meds any more than necessary. She has tried that route, and she just cannot a) get approval from her insurance, and b) she cannot function well when on them. Her insurance is state insurance, Medicaid, and they have gotten very restrictive over the last few years.

        Her uro specializes in IC and also focuses on research into IC and maintains a research lab next to his office for that. Thank goodness she found him and she really likes him. Thank goodness we live in a large city and have that resource available and don't have to drive hundreds of miles to get help from a specialist.

        It will get better, I know, when the medications and/or the procedure begin to help. There are no other family members as we are a very small family. I am encouraging her to apply for SSD, too. I did my own application and was approved on the first go round. I did a lot of this type of work at my law firm. IC is a listed disability thru SSA.

        Her doc did tell her that she cannot do much of anything following the initial Interstim procedure, prior to the actual implantation. Is that true? I need to read more about this. I know we are kind of pinning all our hopes on this procedure/surgery, but it is one of the ultimate solutions, isn't it?

        I would like to see her on the IC diet, but she is stubborn and unwilling to give up some of her favorite foods, like cola, chocolate, salad dressings, and fruit. I bought her some blueberries, which is on the diet, and she feeds them to my GD, who loves them! But, she won't eat them herself because she says she does not like the whole berries, but only likes the pureed stuff. This is one thing I actually CAN fix. LOL!

        I know she should be helping herself more, but darn it, she is very dependent on those of us who are caretaking. But it's partly our fault, her dad, me, and her hubby. We have always treated her like a princess and she fulfills that role to the "T".

        The reality is that she really cannot do this on her own. Or, at the minimum, it is not required that she do this on her own. We love her very much, and I'm trying my best to get thru this for the GC so that they suffer the least impact from mom being ill, as possible.

        Susan

        Comment


        • #5
          I forgot to add to the medications list that has been put on Testosterone because her blood tests revealed a low measure of that hormone.

          I might add that her blood tests also disclosed a problem with her adrenal glands, and she has been told that cancer is a possibility. This has also been an upsetting issue. She has been referred back to her PCP to further investigate this.

          Susan

          Comment


          • #6
            If she's not willing to at least try the IC diet it's very unfortunate. The interstim may not even help if she persists in drinking sodas, etc. You and her husband might want to talk with her doctor about encouraging her in this direction.

            There can also be problems with some supplements.

            I sincerely hope the gland problem can be resolved quickly. I know that can be scary.

            Sending gentle hugs,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              Hi, Susan ~ Oh, my, you sure do have your hands full and the heat has got to be exhausting. I am 62, watch our near 7 year old grandson every day while Mom and Dad work, and also have my 90 year old Mom living with us. I also have IC. I in no way think you are selfish....if anything you are so compassionate to even come to this site to see what YOU can do (again, more) to help the situation. You will certainly get support and suggestions here and as mentioned, the early stage after diagnosis, plus having a little one just barely a year old, along with a 9 year old can be so mind boggling and affect not only the physical, but the emotional, spiritual, etc.

              I agree that she may find a lot of relief if she tries the IC Diet.....a lot better than staying on pain medication. You're certainly doing all you can and this site is so very informative in a down to earth manner that hopefully you'll get some ways to help the situation.

              Take care.....What a wonderful Grandmother and Mother you are. Some family members just don't know how to deal with this sort of thing and basically walk away.

              Blessings,
              Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

              11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
              8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
              8/2010 Surg gallbladder
              TREATMENTS (updated 4/15)
              IC Diet since 8/2009 (Able to vary 4/15)
              Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
              Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
              Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
              *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
              Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
              PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

              Comment


              • #8
                Just echoing what's been said already. I have pretty severe IC (started out voiding 60x a day) and when I tried the diet initially, I thought it didn't work because I still had a lot of symptoms. But what I learned over time is that I require a significant amount of medical treatments to treat my IC - and that they work ONLY if I'm on the diet. If I were to eat chocolate, cola, coffee etc., my IC would be unmanageable in spite of the extensive treatments listed after my name. With the diet and the treatments, I have good quality of life again and work fulltime. I won't say that the IC doesn't affect me - it does and I do need workplace modifications, but nothing of what I have is possible without the diet. I hope that my story might encourage your daughter to give it a considerable try - like at least a month of strictly following the diet - just as an experiment.

                I will say that I have an acquaintance totally disabled by her IC and drinking multiple cups of coffee per day. She had nerve blocks and interstim to no avail. No medical treatment could overcome the damage she was daily inflicting on her poor inflamed bladder. Just something else to consider...
                Kadi

                -------------------------------------------------------------
                I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment

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