Week 19: Pill Problems
By Elizabeth Shean, Caring.com contributing editor
This caregiving gig is hard. No, it's beyond hard. It exacts a toll in ways too numerous to list. From the physical demands of caring for another person to the frequent blows to one's self-esteem, caregiving must top of the list of most challenging jobs.
I sit here on a Sunday morning, feeling like a fool – for the umpteenth time – and questioning whether I'm really capable of doing this. Let me tell you why.
Dad and I have a pill routine. Before I leave for work in the morning, I set out his morning pills, and he takes them with cereal when he gets up. Lee sets out his evening pills, and Dad takes them with supper. After supper, Dad usually goes right to bed. I then set out his sleeping pills. An hour or two later, like clockwork, Dad gets up, eats a bowl of cereal, and takes his sleeping pills.
Except, last night he didn't get up like clockwork. Last night, the sleeping pills remained on the table, undisturbed.
And so, when Dad arose at 6:00 a.m. -- before the rest of us -- he saw his “morning” pills in the cup where they always are and took them. He didn't notice that the cup contained a different number and mix of pills than his usual morning dose.
When I finally rolled myself out of bed at 8:30, I found my dad literally swaying with fatigue while seated at the kitchen table, shaking his head to clear the cobwebs and repeatedly saying, “I feel awful right now. I don't understand why I'm so tired. Why can't I wake up?”
When I figured out what had happened, the self-recriminations started. How could you be so stupid? How could you be so lazy? How big of an idiot can you possibly be?
You see, I heard Dad arise and go into the bathroom this morning, and this fleeting thought crossed my mind: Maybe you should get up and make sure he actually took his sleeping pills last night. What if they're still sitting on the table?
Nah, my sleepy brain responded. He always takes his sleeping pills. Besides, Sunday is one of the few days I'm able to sleep in.
And so, I rolled over in bed and pulled the blanket up snugly around my shoulders.
Boy, do I feel like a jerk.
As I type this, Dad is sleeping in a chair outside in the morning sun, and I'm feeling like a lazy, self-centered boob. Putting my own needs ahead of someone else's – someone who needs a competent adult watching over him.
Maybe I'm not cut out for this. Maybe I'm too selfish. Maybe I was wrong all along in thinking Dad would be happier and safer with me than in a nursing home.
How can I ever make this up to him?
Thank you Journey002 but that is one I was doing and how I have put the ball back in my husbands court. the problem is, when the meds are on the table even while eating, and when the meds are not; he gets up and starts wandering holdiing the pills in his hand. turning his back; he'll put the napkin in his hand, I caught him putting pills in the nakin while pretending to wipe his nose. he seems so coherent but there is no reasoning; no real conversations about anything; so talking to him about it....not. Yeah will stand next to him or sit depending on. thank you again I will regroup and start over. this week, so far he's doing better with thaking them, that is a good thing.
@NightOwl...I tried to coincide meds with mealtimes. I would give them to her after she had started eating, watch her take them with her drink and then watch her take the next few bites of her food so that I would be sure she had actually swallowed them. The only times I had to come away from the routine was if she needed her pain meds and she was willing to take those. Especially if I told her that her doctor wanted her to take them (she loved and trusted him...so, that helped a lot!! lol). You may try this and see if it works for you.
Hugs night owl
I like the idea of the pill dispenser with the alarm on it. I tried to let Dad have control of his med's, he was taking the wrong ones at the wrong times; argued all the time about what and when so I took over. Then; I started finding them in shirt pockets; pant pockets; but since he doesn't change clothes every day; I didn't know which day they came from. then I alos caught him taking his night pills the next morning, when he would find them in his pockets himself. I maintained a tighter watch when he took them, he became increasingly creative in hinding them. It isn't all of his meds that he doesn't take at the spesified time; more often then not, he is picking out the alzh meds. he takes about how important they are for him to take but yet these are the ones he is hiding the majority of the time. of course theres no talking to him about it; denial then an angry search of his pockets will insue on and off for half the day. if was frustrating me to no end. I put the ball in my husbands hands since it is his father. I put the meds out while my husband is with him, I ask him if he watched him take them, no I had to go do this or I had to do that. there was someone who worte a blog about being left with the responsability of her boyfriends grandmother. how he comes and goes as he pleases and doesn't help. I have a great friend who helped me by listening and figuring out what "I need". who ever you are try to take a stand for your own sake. I felt such an obligation and worried about what would happe to Dad if I wasn't there. but I told my husband that my 2 day trip home wasn't going to be enough I told him I am taking a full week; I changed my ticket; called my kids and said make room for me for more than 2 nights. my husband was forced to take his vacation time to be home taking care of his father with out me there to do all the little things while he does his thing. Im not good at confrontational stuff but I do feel better and a little less frustrated knowing that I will have a week to not have him following me from one end of the house to the outher; not having to worry. oh I'll worry while I'm gone that is nature but its in my husbands hands to do what he said he wanted to do. we all have to pick our battles; I am learning that some battles need to be fought before desaster and how to reconginze what is coming a little sooner.
Elicabeth, you are trying to let your Dad be as independent as he can. It is as much a mistake to take over things he can do for himself as it is to give him an extra dose of pills. It turned out fine; he won't remember, and he still feels man enough to handle his own pills. One of your desires is to help your dad keep his independence and dignity as long as he can. We've all made a number of mistakes - your data will accept risks that you won't in order to remain independent as long as possible.
LOL I apologize for all of my spelling errors in my previous post. I had a long day of juggling my grandbaby's needs and mom's need to be "talked down" from wanting to have her car returned to her "Immediately" and why it's important that she dine with the "old people"(her words lol) at her table even if they can't hear her. She's a spunky one! :)
I have been reading your blog and I think you have been doing a great job. Your dad had a sleepy day. He didn't overdose or get sick. Please don't be so hard on yourself! I admire all of you who can provide care for your loved one at home. I couldn't do it. My husband is a sweetheart, but my Mom even pushed him to the limits, she despises my beautiful grandbaby, and never stops complaining. I had to move her into assited living and she is doing fairly well. I now have some freedom and so does she. There are plenty of safe places there for her roam. I was always afraid that she would wander from my home and I never slept well. She was breaking everything the most recent thing was the garbage disposal. My mom was kind of a prima donna before she got dementia and now it's magnified ten-fold. In assisted living they keep telling her how young she looks (it's true) and she eats it up. My point is that I reached my limits early on. Now mom is a few minutes down the road, safe, well-fed, and has a chance to socialize with someone other than me. I visit every day and taker to all of her appointments. We enjoy our time together now. A sleeping pill for breskfast is not so bad. Compared to all you do for your dad, it's just a "blip"
I have had it so long, I'm trying to remember where I got it. I believe I found it on EBay. The one I use is Medtime also and I belive it cost me around $170 or so...well worth whatever price I paid. I recommend it to everyone. It enables them to do something for themselves without risk of failure.
Thanks, everyone, for the kind thoughts and wonderful advice. This community is so supportive. Please keep the comments coming -- I learn from all of you!
There are several different kinds...med-time is the one we used but you can run a google search on 'automatic pill dispenser' and find varying styles. For us, it was a godsend. Good luck
I am intrigued by JAS'comments regarding a pill case that opens based on an alarm. It would certainly make it easier to assure that my brother who has dementia takes the appropriatepills at the right time. Does anyone know where to purchase such a alarm pill box and what it costs?
It's always something so take it easy on yourself. There are far worse things. One thing I have done is invest in a pill dispenser, about the size of a small plate, it can be set up for 28 different doses. An alarm goes off at dosing time and the pills advance in their little chamber. All the patient has to do is dump them out which makes the alarm stop. Otherwise, the alarm will go off for up to an hour at your discretion. Although, after using the dispenser for 2 years, my mother is beyond doing even this, it continues to help me remember that it's pill time. It has been a lifesaver and even considering the fact that it was somewhat pricey, I would do it over again for the grief it has saved me over the years. I don't know what I would have done without it some days. One less thing to remember 2 times a day is a small victory when you are caregiving.
Elizabeth...as always I love reading your updates! This past weekend I forgot TWICE to give my father his evening meds because both nights we were out doing something I wanted to do (dinner and then a church function). I felt so awful...like I am so stupid and self-centered. Seems we all mess up some times.
Don't feel bad AT ALL. You need some time for you or you will burn out and be no good for him or yourself. I saw my assisted living mother 7 days a week at least once a day, sometimes twice. Plus I called her. I felt very protective of her and felt like I had to give up my life to be there for her. Well, I had 3 severe melt-downs in 7 months... just too much for me to handle, what was I doing to her, etc. My chiroproactor told me I was a physical mess, so tight he couldn't even adjust me. He told me to go on vacation. I brought in a relative to stay with her for 9 days and I left. Had a marvelous time and didn't even worry; knew she was in good and capable hands. When I returned refreshed and ready for her needs again, I made some personal rules for me: I now see her three times a week and still call her three times a day. BUT I stay home, or do things for my husband & children, or go out with friends. Regardless, I have my life back, am less stressed and still am there for mom early in the a.m. or late, late at night but much more capable. You MUST do things for yourself and not ignore YOU. You are the only person your dad has so take care of YOU!
Gosh been there done that and still do. But home is best for us. My mom spent 6 months in and out of a nursing home and hospital. She did make it home for a day during that time only to go back into the Merry Go Round. What I did find out was that I will not let my mother go back to a Nursing Home. The two that she used during this time are well thought of in this area. I have many horror stories from over medicating to dropping her to toes bent back in her shoes I could go on and on. And all of this was done right under my nose as I spent many hours of every day there with her. I have made mistakes at home and sometimes I just feel I can't go on another day. But then I remember what went on in those 6 months. I realize that not everyone can be cared for at home. But I know my mother is safer, happier and healthier at home with me even if I make a mistake now and then. So you just kinda have to do what you think is best for all concerned even if you stumble. I kick my self in the butt often and then do my best to move on. And moving on is so very hard but I find that I don't have the time or luxury to beat my self up, as caring for my mother takes up every moment. I just stuff it into a box to be opened up later. In hopes that I have done enough good and right to out weigh my mistakes when all of this will come to it's end. To know I did my best with all that happened and what I had to work with. So the best thing I can say is look at the benefits and care and love that your father gets at home. Realize that in most cases you will give better and more loving care than any on else. If a nursing home is the answer you find then be on your toes as I found it harder than keeping my mother at home. Best of Luck, WRS
Hugs dpm, TotalBedlum
Elizabeth, please don't beat yourself up for being human (although I've always done exactly that). We've all had those moments when we really wanted to believe that things were not so bad that we had to DO something right at that moment...only to find out otherwise. As my family traveled the path of dementia with my mother, the automatic pill dispenser we purchased turned out to be a lifesaver (maybe literally). Battery operated and portable, it doesn't let the patient take pills too early or too late, and can be set for multiple configurations. When my mom became unable to take medication (or eat, or dress herself) on her own, the dispenser became an invaluable reminder tool for our whole family. Oh, and contrary to what some say, we did get to a point where a nursing home was the safer and better option. Just two weeks ago, after living with us for five years, my mom was admitted to a nearby VA nursing home and is now walking and talking again, something she didn't do the previous two months. It's a wonderful facility and she's thriving with round the clock care (she naps but doesn't really sleep...and no doctor would give her sleeping pills because of the likelihood she'd fall). As we all know, every situation is unique, and all we can do is offer our own experiences for others to draw from. So if the time comes for a higher level of care (we went from sole caregivers to bringing in Visiting Angels, to nursing home), don't let anyone guilt you into thinking it's the wrong thing. Only YOU can know what's best. Blessing to your family.
Elizabeth, It sounds as if you're putting the pressure of "being perfect" on yourself. Give yourself a little more latitude to be a human (which requires imperfection) AND to be the loving person that you obviously are.
Don't ever for a moment think that your dad would be better off in a nursing home. Where else can he feel all the love you and your husband offer. Don't beat up on yourself. Learn from this and move on. You are such an inspiration to all of us dealing with dementia. May God continue to bless you and your family
Elizabeth, if there were a set of guide books that could predict everything that could happen while being a caregiver, I am so sure that you would be following it to a "T". No such thing exists, of course, so, you live and learn. I've been in similar situations with my mother-in-law, where I believed her when she said she did take her meds or when she said she didn't take her meds, only to come to the realization that it did not occur and watch the consequences happen. I did end up putting her meds away and she took nothing without supervision afterward. Its a hard lesson for you to learn, but, you can't beat yourself up over it. He will be fine. There will be other incidents that you will guess yourself about, but, like I said, caregiving doesn't come with a manual, and we learn as we go. I used pill boxes (a morning and night one, and then a separate one for her in between dosages) that I filled up once a week and kept in the same place (she couldn't remember where) so that if I wasn't here, my husband would know where they were and could make sure she got them. She was also on liquid Methadone for the pain (other pain meds made her too loopy) and that had to be done individually, of course, but, the boxes helped a lot! You move on from this and make a mental note that things need to change, then change them. You're on an ever learning journey here and you are really doing the best you can, so, stop feeling like you're not, okay? Hang in there and know that your love and care for your father will never let you do something so catastrophic that he will be in serious danger. God bless, as always! :)
Thanks for the feedback. Anonymous, you're right: I tend to beat myself up. I've since gained more perspective. Babygirl6152, it's nice to know that I'm not alone!
Hugs sopranogal41@aol.com, TotalBedlum
Thanks for your candor. I can see myself doing this. I love sleeping late more than anything. Would have used the same exact logic too.
Don't be so hard on yourself. You needed your sleep and your Dad will probably benefit from a little extra sleep in the sun as well. He isn't aware of what happened and as long as you continue to treat him with love and respect, that is all that matters. He knows down deep you love him.