Facebook Official

My goodness. Bob has been on my mind 24/7 this month. And it’s not a bad thing. I think it’s because a year ago right now, things were rough. Bob had declined to where he needed help with almost everything. He couldn’t hold his spoon to eat or hold his coffee cup without dropping it. He had a terrible time getting into bed and just couldn’t figure that out. He would just plop himself into bed and where he landed is where he would sleep. Even if most of his body was hanging off the bed. Once super fastidious, Bob had forgotten how to shave and taking a shower was a very difficult process that he (and I both) dreaded. He was confused over what Fixodent was for and there were times he tried to brush his teeth with his razor. It was so sad to watch the physical decline that most people don’t know is associated with Dementia. Yep, the brain just stops being able to tell the body what to do. The body just stops being able to function without the brain directing it.

Bob was on a downhill slide, and it was excruciating to watch. Thinking back to last October/November brings me chills. But it also is a reminder that Bob was not living a life that he would have wanted. Yes, it was time for him to pass and sometimes these memories of the rough times make me realize that I didn’t lose a healthy happy Bob, I lost the Bob that was ready to go. Weird as this may sound, that helps a bit. I know how Bob wanted to live and how he was living last October/November was NOT how he would have ever wanted to live. On that issue, I am 100% clear.

But this year, I still have lots of changes to process. I am still not used to my new life without Bob. I’m not miserable. I’m just still trying to sort through my feelings about everything! I can be positive and upbeat and then downtrodden and miserable in the same hour. I can cry at the drop of a hat over a tiny thing or be perfectly content and smile during the most emotional experiences. Yes, I’m a mixed-up mess.

I’ve read many books about grief— about 5 stages, 10 stages, etc., but I just don’t think that those books cover everything. They barely scratch the surface. Just when I think I’ve worked through most stages, I come across another hurdle or issue. Maybe I’ll write my own book! Maybe my book would have 50 stages of grief or more!

So today I take another big step in this grief process that isn’t in any of the books I’ve read. Today I change my Facebook status to widow. Yep, it’s finally Facebook official. I know it sounds silly, but my stomach is churning a bit. Dare to move ahead. Here I go.

Bob with me and with his daughters Shelly & Julie
Fall 2021

Helicopter Wife!

I did move Bob back home after 9 days. I think the memory care facility was inattentive, understaffed, and uncommunicative. They probably think I was a worrisome helicopter wife–hovering over my guy!!

I don’t know if my expectations for his care were too high, but I felt the assurances given about the level of care Bob would receive were not met and that I could take better care of him at home. I could give lots of examples on their lack of care but trust me, Bob wasn’t getting top notch attention by any means.

I packed up his little bedroom into laundry baskets and black plastic bags and home he came. The first few days at home were some of the worst days we’ve ever had. Change is hard for folks with dementia and the bouncing to the facility and back again must have thrown him into a bit of a chaos. I questioned my decision to bring Bob home repeatedly. Questioning my decisions seems to be a common occurrence.

But now that Bob’s been home for nearly 2 weeks, I realize that it was the right decision. It’s hard to be responsible for him 24/7 but I think it’s easier than worrying 24/7! Now if I could just get him to sleep at night instead of the day.

Even though I still feel that he’ll need the care provided by an assisted living/memory care facility, it will need to be “the right place”. So, Bob continues to be on the waiting list for that place and I will do my best to take care of him in our home until there’s a room available for him. Waiting on God’s perfect timing. Patiently.

Psalm 27:14 “Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!”

Bob with his son Steve at the care facility~~~~~~~~~~~~~~~~~Bob with his daughters Shelly & Julie at our home

Welcome September!

I made a lot of decisions in August.

I started with a private caregiver coming to our home a couple of mornings a week so that I could go to a Jazzercise class. BOTH are working out GREAT. I’m a klutz on the jazzercise floor but it’s great to get a good workout and clear my head. But most importantly, Bob and caregiver Nicole do well together. She just sits with him while he dozes off and on in his recliner. She fixes him his breakfast. Occasionally she can get Bob outside to walk with his walker but not often. He’d rather sleep. It’s sweet to see how he’s taken a liking to her, and he is always pleased to see her and has no concern about me leaving. What a blessing. Thanks Nicole!

Then I met with the administrator of a local residential memory care facility. Big step. I had a long list of questions for her, and all were answered. I’m a planner and I like to be able to know what lies ahead if Bob needs to live in a care facility. It was such a helpful meeting for an organizer like me. My sister Christie went along with Bob and me so that I had someone else to listen to the answers and ask about things I forgot. And give me support. Thanks Christie!

My biggest takeaway was something that was said at that meeting—I will question and have guilt over every decision I make from here on out. There’re no more easy decisions ahead. To have doubt that I’m doing the right thing for Bob and me is the new norm. I just must learn to quiet that voice that constantly chirps in my ear questioning my every thought and move.

At the administrator’s suggestion, Bob has spent some time there throughout August without me. A little respite care for me and a little time for them to evaluate his behavior and assess his needs. Bob’s disease has progressed to the point where he doesn’t seem to miss me or be concerned about me being gone. As sad as that is, I’m glad that he wasn’t there worrying about where I was or wondering when I would be back. The staff tells says he’s cooperative there and he’s welcome for daycare anytime. What a huge relief to know there’s a haven for Bob when I have appointments or a place to be where I can’t take him. My blood pressure and stress are already better!

Then I put Bob on their waiting list for a room. What?! Yes, I put Bob on their waiting list for a room. Am I really ready for that? Is Bob at the stage that he’s ready for that? I always had a benchmark in mind as to when I might consider placing him in a memory care home and he’s not at that benchmark yet. But where Bob is right now is crazy hard. I just am not sure that I’m able to care for Bob at home and I’m vacillating on just what to do. I never realized how hard caregiving for a person with dementia would be. I know that sounds ridiculous, but I seriously thought I would be able to deal with anything and everything that would be part of caring for my hubby. NOT!!! This is quite the wild ride and I’m not sure I can stay on it!

I have always said that I won’t make any big decisions while I’m tired, anxious, stressed, angry—but guess what? I’m tired, anxious, stressed, and angry every day.

There is no available room for Bob at this time and I have no idea when a room might open. That’s probably good as I’m not sure if we’re ready to take this step. I do know that God has a plan for Bob and for me. A room will open at just the perfect time. I’m trusting in God’s perfect timing.

So, let’s see what September brings!!

Proverbs 6:19
In his heart a man plans his course, but the Lord determines his steps.