I need help! My 17 yo daughter was diagnosed and began treatment in February 2010. My husband is disabed and is at home taking care of both of them.
The way our LLND has them take their meds is spread into 4 doses. Basically:
1) Enzymes, Heparin take then wait 30 minutes then; 2) Abx take with meal, wait an hour or 2 and then; 3) Probiotics and other supps wait another hour and then; 4) Binders
This routine begins when she wakes up around noon and ends when she goes to bed around midnight with a dose of sleep meds. She's still sleeping 12 hours a night.
When she was first diagnosed my husband was able to give her meds and keep her on schedule, making sure she ate healthy and didn't miss any doses etc... She was too sick to do it herself.
Husband got diagnosed with Lyme and co in July and began treatment himself. He's having a rough time of it and it's all he can do to remember to take his own meds and eat etc... He tells my daugher to take her meds and eat, but that's about it. I get home from work most days around 5:30 and she hasn't taken any meds, or eaten too much. If she has taken meds it's usually just the abx.
She probably gets all of the correct doses 3 days per week, the rest of the time it's hit/miss.
I can't afford to have a caregiver at our house when I'm at work. In a perfect world my daughter would eat the healthy food I buy and take her meds timely. But it just isn't working. We've tried setting timers, alarms etc. When she's away from home, it's even worse. She just won't take her meds.
If she doesn't take her meds she won't get well. But being 17 and having to take meds every hour 9 x a day is impossible for my daughter it seems. The better she gets, the harder it is for her to 'remember'.
Arrghhh!!!!
I would like to know how other's have dealt with this. Anybody have any ideas about how to get the meds done? Are there different protocols out there where it could be just be 2-3 times a day that she needs to medicate?
Help!
Posted by jkmom (Member # 14004) on :
I would pick the most important things and make those a priority.
We take our probiotics only at bedtime, away from abx.
We do abx twice a day with meals, and supplements in the middle. I add some supplements at night with sleeping meds and probiotics.
Maybe she can still take everything and get some benefit, even if it isn't perfectly timed.
Her last LLMD was integrative and had her on lots of supplements. A year later, she wasn't any better and we switched LLMD's but I still consult with him for supplement advice. Even he had her drop a lot of the supplements at that point.
On a perfect day, my daughter takes meds 4x daily. Sometimes I add in the supplements at the end of the day with her sleeping med and probiotic.
Posted by sillia (Member # 23994) on :
I agree about prioritizing and trying to streamline it to make it realistic for her to follow.
Have you tried using a checklist? This is the only way I can manage my supps & meds. I have a blank copy of a simple form of a checklist I designed--I would be happy to send this to you in case it gives you some inspiration. You could re-design it a bit to suit your own needs.
When I look at my checklist at the end of the day, I am pleased with myself if I have done a lot of the things on it (it also includes exercise and other modalities, as well as pills) and have a lot of checkmarks. If not, I remind myself to do better tomorrow. Maybe she could "grade" herself each day as a way of taking responsibility for her own care.
Can we send files via the mailbox here? I don't know how to do that, but you can email me at sillia3 (at) yahoo (dot) com, and I can email you back with the one-page form if you'd like to see it.
Posted by nefferdun (Member # 20157) on :
I think most people take abx twice a day, morning and evening meals. Maybe you could call to remind her of the morning abx and then you are home for the evening.
I think it is pretty hard to swallow pills three times a day much less 9. I would "forget" too. So I would have her take the supplements at lunch time.
Buy three pill boxes with the days of the week on them. Mark one AM, one PM and the last box for supplements can be unmarked. When you get home from work look to see that the pills for that day have been taken.
You can also do this for your husband.
I have to do this for myself as well as the dog. Otherwise, I cannot remember if I took them or not.
Posted by momlyme (Member # 27775) on :
I just bought a pill dispenser from ebay to make mine and my son's pills more manageable.
And I use 3 of them for my son's pills. I need to add a fourth time of day and decided to purchase the one in the first link.
Posted by pepperspeck (Member # 18837) on :
Is there some way to set an alarm to go off to remind her? It might help. I know that with my daughter, I have to watch her take them because her memory is not good. I agree with the pill organizers being helpful as well.
Posted by tls122269 (Member # 23200) on :
I go through the same thing with my daughter. She is 18 and I have to constantly remind her (Text or call). It drives me crazy...why can't she remember to take them.
We also have a pill organizer and it does help. Actually we should probably get another one because she does have about 6 different pills she takes.
Anyway I like everyone's suggestions. I know my daughter carries her phone around with her wherever she goes maybe she should set an alarm on her phone...just a suggestion maybe for your daughter.
Happy New Year and hopefully a healthy one as well.
Posted by LymeMom Kellye (Member # 24807) on :
Thanks for the suggestions everyone! I really appreciate your ideas. We do have pill organizers. I have 2 large ones, actually 4 as I get the pills ready for 2 weeks at a time.
The first large one is for her 4 AM doses. The 2nd is for her PM doses. Each one has 4 sections, one for each day of the week. Her pills are broken down into 4 x in the AM and 4 in the PM. Then a container for sleep meds.
I put 4 alarms on her phone. She turns them off. I call her/text her and she says yeah, I'll take 'em now. Then she goes back to sleep. When I can I come home for lunch and make her breakfast and at least get her AM abx done. I can do the PM when I'm home from work.
Tonight she's staying at a friends house and has her meds. I imagine that when I pick her up tomorrow she'll have taken the AM doses, but not tonight. Even have a small to-go bottle for her Mepron. It's just lately that she's well enough to stay away once in awhile. After a year plus of being homebound, she can't wait to get out.
I think it's the 9x per day (4am and 4pm + sleep) that's too much.
Someone suggested giving her the abx in the AM, supps at lunch and abx in the Pm with dinner. Then do all of the probiotics at bedtime with her sleep meds.
I would love to have her only taking meds 4 x per day instead of 9. She doesn't have a problem taking large numbers of pills at the same time, so for that she's lucky. She's going to try going back to school again in late january.
Being a teenager she's not going to want to go to the nurses office to take meds 2-3 times a day. Plus I want to keep her away from the nurse if at all possible because on days when she doesn't feel well it will be too easy to lay down and call me to pick her up.
tls, I hear your anxiety about it. I constantly wonder if she'll ever be independent again...
And I thought pill boxes were just for my grandparents.....
Thanks everyone!
Posted by momlyme (Member # 27775) on :
tls - I was going to suggest the alarm on the phone. My son is only 11 but his dad got him a phone because he has trouble getting up and down stairs... so he can call for help.
He sets reminders (alarms) on the phone for everything from getting up to eating to the tutor is coming. It helps him have control. Plus, he is never hungry... so without a reminder he wouldn't realize it is time to eat.
(I cook and remind him too... but the phone really helps!)
Posted by PTrain (Member # 28773) on :
Just a thought. If your daughter does a lot of texting/emailing.... Google Calendar is free and you can set it to automatically email a reminder to your daughter one hour before she has to take her meds. It's very simple to use and as I said, it's free.
You could actually maintain and view the calendar and just put in her email address to receive the alerts. It only takes about one minute per week to maintain.
Also, I agree with others, you need to condense things and only have her take three our four times per day. Nine is just too much and really no reason to spread it out like that.
Finally, have you considered some counseling for her? Sounds like she might be derpressed and perhaps having someone to talk to might help her through. It's so easy to get depressed dealing with this disease. Perhaps you have an Employee Assistance program through work. Often they provide several free counseling sessions. I had eight free sessions in 2010 and it was very beneficial.
PM me if you need help with the Google Calendar. Take care and good luck as it sounds like you really have your hands full. Happy New Year!
PS: I have had this for 10 years and was misdiagnosed with Fibro. Finally tested positive just two months ago and have spent a lot of time since then mourning the loss of an entire decade. Your daugher may be suffering more than you realize.
Posted by LymeMom Kellye (Member # 24807) on :
Google calendar, what a great idea! Thanks PTrain.
Yes, Amanda has been sick her entire life and it breaks my heart to know how much she's lost. I so much want her to get better so that she can begin to experience a full and happy/healthy life.