Mom's in Rehab, Dad's at Poker, I'm Pooped

Denise

Mom's in Rehab, Dad's at Poker, I'm Pooped

Denise
animal-653446_640I'm not sure if I'm loosing steam or caregiving is just gaining on me. This week, though, seemed to almost be too much for me.

On Monday morning, while the podiatrist took care of my dad's toes at home, my mom had a seizure in the hospital. A neurologist and cardiologist ran tests on my mom on Tuesday and Wednesday; her brain and heart activities were fine. They think the seizure as a combination of several factors including fatigue and dehydration. So the good news was no further treatment was needed. Unfortunately, the seizure delayed my mom's discharge to a nursing home for rehab until last night. And, because a hospital discharge never goes smoothly, she didn't arrive at the nursing home until almost 7 p.m. That's a long day of waiting for my mom, who lost her ability to wait about five weeks ago. She wanted out.

On Monday night, my dad woke me to let me know his bag had leaked so we mustered through another midnight bag change. His frustration grows each time we face one of these middle-of-the-night changes. His frustration about his life, about the difference to his life and about the impact on his life was the greatest it's best since his surgery in March. I'm in task mode in the middle of the night so am not much comfort. I don't disagree or argue, though, with how he feels. He vents, I put on the new bag.

My dad's visiting nurse came on Wednesday; we discussed how to treat the rash that breaks out around my dad's stoma. The rash blisters, the blisters drain, the bag loosens, the leak happens. I called the ostomy supply company to request samples of other bags, just in case he's allergic to his bag.

My dad had his post-hospitalization follow-up with his primary care doctor yesterday. My dad wasn't feeling well yesterday morning (dizzy and nauseous) but felt better in the afternoon at the doctor's. He also needs to be cleared for a outpatient surgical procedure next week to remove the skin cancer on his head and neck. His procedure happens Thursday morning. I've scheduled his visiting nurse to come Thursday afternoon to make sure he's doing okay. We also have a nurse practitioner coming to the house on Friday to discuss using a service which offers regular house calls from doctors or nurse practitioners. It's perfect timing to learn about the service; the nurse practitioner can check my dad to make sure he's doing okay after his procedure.

This morning, my sister and I went with my dad for a follow-up with my dad's cancer surgeon and received good news--my dad's scans are clear so no cancer. We also discussed the rash around the stoma and came to the conclusion that my dad needs to shower every week with the bag off. We think perhaps the rash happens after his bag leaks--it's almost like a diaper rash. Even though he thoroughly cleans the area before I put on his new bag, I think a shower will give the area a much deeper clean.

After this morning's appointment, we stopped to see how my mom did during her first night at the nursing home. About two minutes after we arrived, my mom started crying. "I'm tired of being everywhere but home," she said. Oh, she cried. My sister, closest to my mom in her bed, comforted her with hugs and kisses. My dad and I offered our understanding at how difficult this situation must be for her. After composing herself, my mom began to complain about Sibling, who has gone AWOL since my mom's transfer out of the university hospital. The complaints led to another round of tears.

We all commiserated. My dad turned 84 on Monday but Sibling didn't call or send a card. Sibling was to help my mom with her discharge yesterday because I had a seminar to give downtown. She didn't show so I took care of it. We're all about to lose our cool with Sibling, who leaves for a vacation tomorrow.

My mom, my sister and I encouraged my dad to play poker this afternoon with his buddies. One of his buddies picked him up just a few minutes ago so hopefully he's already winning. A break from worrying about my mom, fretting about his bag and dreading what's next for both of them will be good for him.

My mom was scheduled for physical therapy this afternoon and then a haircut in the facility's salon. We're all hoping that both the therapy session and the time in the salon will lift my mom's spirits. My sister went to the grocery store for my dad and I and then returned to the nursing to visit with my mom. Honestly, if I had to go to the nursing home this afternoon, I think I would have cried. I'm fried.

So, while my dad plays poker and my mom works out with the physical therapist, I'm taking a nap. I'm pooped!

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Lisa

Wow. First, I don't think \"sibling\" needs to go on vacation. they need to give their reservations to YOU. You have to be so tired. I completely understand, though I never had some of the issues you've had to deal with. It's been a busy week for me too, I'll blog about it to catch everyone up. I know this is the zillionth time you've probably heard this but please try and get some rest.

jan

Thank you for bringing us along with you, when you are so tired and rightfully so. So many plates to keep spinning in the air. I'm glad your mom is well enough to be ornery, and your dad is well enough to cheat. I hope you can rest so you remain well enough to accomplish all your heart and mind thinks you must.

Ladyleo

Oh gosh, Denise. You sound totally overwhelmed and I think it's very much a wife/mother/daughter syndrome we have - somehow we tell ourselves we have to 'kiss away' all/everyone's hurts. We have to be available 24/7. We have to know all the right things to say and which things we just need to swallow even though they actually need to be said with several exclamation marks behind them !!!!!\n\nI guess it's at times like this that we understand why we women are called 'the stronger' sex but I wonder at times if that is just a handy label which is hung around our necks so that others will feel less guilty if they don't step up to the plate and divide the pie of 'care' evenly. I have yet to find any group of family members or friends who proclaim far and wide how they take care of Mom/Dad or whoever but if one breaks down just how many hours of care they invest - there is *always* one person who is doing the lions share of the work. And yes, we DO love our caree's - we DO care what happens to them - how comfortable, how well fed, how lovingly they are handled but at the end of the day, because people don't want to send out a wrong message, we carers put in a LOT of SERIOUS work - a lot of behind closed doors because everyone else is just getting on with their lives. \n\nI know that personally speaking I am often SO exhausted that I just want to collapse in a heap on the floor. Or I wish I could rub the Genie's magic lamp to just make my dear mother disappear for a few hours so that I can just be me. To try to find the person I used to be. To be able to laugh. To be able to not have to think about ANYONE else but myself. Some might say that sounds selfish but I now just let those bits of useless information roll off my back because NO ONE who has not taken care of someone with AD/Dementia has a clue at all of just how many of us carers are literally running on empty - we have forgotten what it means to sleep for 6 solid hours - we can't remember when last we laughed and when we cry? We even do that behind closed doors so that we won't upset our caree's. \nYou certainly must have a HUGE heart, Denise because over and above taking care of your parents - you even took on another massive task by setting up a support group for other folks who in one way or another deal with a loved one who has AD/Dementia.\n\nJust know that people like me, though we might never or seldom say it - without people like you - many of us would have simply melted into a puddle of total exhaustion and hopelessness. I feel blessed to have found this site - even though I might not log in here daily. This site for me is like the star of Bethlehem. I know if I feel I cannot take one more step, I just log in and read other folks posts and I find courage again by reading what other carers also go through.\n\nSending you love and light\n\nColette xoxo\n\nSending warmest thanks to you. \n\n

Jean

I felt exhausted reading this! My goodness, Denise. You've been on your toes for months now. And I know from experience (as caregiving goes) that there is lots more that never made it to print. I often think the emotional toll wears me out more than the physical and it's certainly additive or exponential. I hope you are getting some good, uninterrupted sleep!\n

Lillie Fuller

Wow, making reference to Mar's post this morning, you've been \"through it\". You deserve an all day nap, maybe just sleep all night. Wouldn't that be wonderful! The regular visiting doctor or nurse practitioner sounds like such a comforting idea. I'm sure it will ease the worry on all of you. Sounds like you have everything under control! That's pretty sad that Sibling couldn't acknowledge your dad's birthday! Happy Birthday to your dad. I know how that is, my siblings stopped acknowledging almost all the holidays, including my mom's birthday. It's pretty sad that they are so self centered, that they can't step away from personal feelings. Get some rest Denise!

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