We live life fairly transparently. I know many are praying for Dad, he's spoken into your lives over the decades as a friend, mentor, pastor, brother, uncle - you care... I will do my best to balance transparency with Dad's privacy.
Dad has been home from the facility for a month. He is 2 months post surgery. A quadruple aortic by-pass is a big deal - made even bigger if one is 79 and has a diagnosis of dementia.
As Dad feels stronger new challenges arise. While he CAN walk with the walker these days (an improvement from when he came home immobile), his legs (and arms) simply give out unexpectedly. One of us is ALWAYS supposed to be within arm's length. Sometimes Dad forgets this; sometimes, I suspect, he simply balks at the dependence. ::wink::
One afternoon, as I adjusted the gait belt for a walk, I told him he was like Peter...belted up with others leading him where he doesn't want to go. Mike piped up a loop around the house was better than prison.
The PT and RN spent quite a bit of time this week explaining if he hits his head while on these blood thinners he can bleed out before we know there is a problem.
Dad has gotten quite good with the wheelchair. Here he shows off his skill with doubles.
I told him we needed to get our laps in with the walker. Um. ::snort::
Our goal is to "park the wheelchair" unless we are going outside. This will encourage more natural exercise times of walking with the walker and getting up and down etc. His muscles didn't work at ALL for a full 3 weeks post surgery. We'll get there. He likes the wheelchair as it gives him more security and independence. It's a juggling act.
Other than the challenge of mobility, Dad is having quite a few nosebleeds. When I check blood sugar it takes about 5 min to stop the bleeding. If he bumps his hand on the wall - it bleeds....we are to call the RN if I can't stop the bleeding within 10 min. We've been up against that time constraint many times.
Sun Down Syndrome
is real and became a part of our reality on Halloween. After being immobile for weeks I woke at 2 a.m. to find dad at the head of the stairs, then moving to the window, in his wheelchair. This was terrifying on many fronts. The safety issues jolted me out of bed. The need for supervision ramped up. He didn't know where he was and it was a prolonged time before he DID know who he was, or where he was. He did recognize me. He told me he was glad I was here because this was scary. My heart. It was scary for us too.
These incidents continued throughout the week. The last few nights he's slept through the night. I attribute this to prayer at bedtime, and trying some of the tips shared with us. This is the first time we've seen what they saw at the facility. We'll be discussing the cognitive breaks, vivid dreams, and hallucinations with the doctor this week.
Which brings us to discussing Dad's mental recovery. He's happier at home. He's smiling. He's reading the paper. He holds conversations. He needs verbal cues for several tasks. He is remembering family names. He's remembered most functions on his phone. He laughs and tells jokes. He gets angry from time to time. He followed the election results for 3 days....and then decided we'd best just keep praying.
I am becoming an OT/PT assistant - now if I could just fit my exercise in as well as I keep up on his. ::snort:: Both the Occupational and Physical therapist have given him daily exercises. I thought he was about ready to be discharged from their care. They told me they will not discharge him for quite a while and there is still a lot of improvement they think we can achieve. From those first few skeptical appointments - we've all become one team. All have commented throughout the week how he is making good progress, has good caregivers, and is lucky to be at home. They've been pleased with his progress in the past month.
I spilled my heart about the new dementia incidents to the speech therapist on Monday morning - the first home health into our home. At the end of my story I said, "I'm sorry. You're here to check on swallowing, not all this, but I don't know who to contact about this." Um....I'd forgotten. Speech therapists deal with dementia. Perfect timing. She gave us some tips, is writing a referral to switch her treatment from swallowing to cognitive support.
The new sun downing wrinkles brought shift work to our home. Michael and I trade off so someone is aware and awake at most times of the day....though all are slightly punchy at all times of the day. ::snort:: We've added a monitor and will have a fall alarm as soon as Amazon gets it here. The wheelchair (which is easier for Dad to get into quietly) is no longer in his room. We can hear him as he moves the walker - because Michael rigged a soda can alarm on it. Hey - we may be redneck but we are getting it done up in here.
See! Doesn't he look happy to be in the middle of family activity? He helped color fondant this week.
He helped with party decorations.
My days are full. Dad can no longer get his own breakfast or lunch. There is a lot of laundry, lifting, watching and interacting. There is a lot of checking levels...blood sugars, oxygen, heart....
I can't get a routine worked out which includes Jesus time, workouts, reading, blogging, yard work, Bible study breakfasts with Stacia, time with friends....I have attempted to be disciplined and work it out. I've not been gentle or realistic with myself.
I attend a weekly zoom small group focusing on my wellness journey. Frankly, I wrestled with whether I should attend this week. I'm not working out. I'm not moving forward. The last 2 weeks I had to leave mid-meeting as Dad woke up and rang. I attended and sat quietly. At the end of the meeting the leader (Tamara) and one gal asked me to stay and chat a bit.
They observed 1. I'm doing this well. I started crying. I didn't realize my emotions were so near the surface. It doesn't FEEL like I'm doing it well. I feel frazzled and off kilter. 2. Tamara used to work in a hospital and told me to consider my early hours as shift work, and to sleep rather than work when others wake up. For the first time in weeks I realize it's OK if I choose to sleep over a task or working out. It's o.k. if I don't lose weight just now. I'm in a transition season and I need to recognize it. Going to bed at 10 and waking up at 1:30 for the day is wearing this "middle aged" gal down. I HAVEN'T been able to nap during the day...but I'm prepared to do so next time Dad takes a mid-day nap. I've kept him too busy Saturday and Sunday to nap...and BTW less mid-day napping seems to help with sundowning too... and 3. I realized I lost chunks of some of the kids' childhood because I was so focused on getting "back to weight." I don't want to lose a minute of this special time with Dad because I'm fussing about weight. We'll figure it all out.
On a personal note, I am learning to walk in TODAY and not worry about TOMORROW through all this. In our discussions with various professionals about Michael's Parkinsons I've been determined to get healthy so Michael can stay home when we're "old" rather than going to a facility. I plan to be the little old lady who can bench press 200 lbs, and lift her 6 ft husband without a thought. As I take on Dad's care, and fight the exhaustion, I began to think, "There is NO WAY I CAN DO THIS FOR MICHAEL." And that, my friends, is the enemy of my soul, trying to wiggle his way into my soul with lies and fears when I'm in a tired state. Those thoughts are captive to the lordship of Jesus and I'm going to focus on walking this season well, learning all we can in this season, rather than fretting about what a future season MAY look like. LOL
One last thought...Dad has some amazing friends. Thank you to those of you who call or listen when he calls....thanks for laughing at stories from past decades, helping him recover a detail or two when he stumbles, and not pointing out when he shares the same info with you 3x in one call. You all are the best - our family appreciates you.
We checked this system out again on Saturday. It still works. Glimpses of outings to come.
I think we've all made remarkable progress in one month. I bet we have this thing flying high by this time next month.
Thank you for always being transparent with your life. I have learned a lot from you over the years on things like marriage and parenting. Now...how to care well for others. I am praying for you & your family as you adjust to all of the changes happening in your life...in the midst of 2020 no less!
Thanks for sharing, De'Etta. We know better how to pray for you now. I've only spent a few difficult weekends caring for my Mom, and have never been more tired in my life...inside and out. So glad you are getting good counsel from staff and friends! Praying for you guys!!! Love, Kim
Today marks the 6th anniversary of my mother's transition to heaven. I'm feeling a bit nostalgic and sad for myself. Mom's body and mind were both healed perfectly. Dementia is incredibly difficult on all parties. Dad reported that mom grabbed her head one day, as she struggled to put something into words that eluded her, and cried, "What is the matter with me?"
Elder care is not for the faint of heart, as you are finding out. I hope that your blog can be a good outlet for your thoughts, hopes and prayers. It is so very important to know your limitations and take time for yourself, especially if it's sleep. I've been off facebook for while and don't anticipate going back for another while. ;) but I have been thinking about you and wondered how your dad was faring. It sounds like he is doing extremely well under the circumstances. Stay encouraged, my friend. God's got this.
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