Being a Caregiver for My Dad
Tonight, I am finally having a much needed, good, long cry.
It’s a snowy evening, cold, and I just removed the dark blue sheet off the electric chair that my dad used while he was living with me and while I was his caregiver for a brief space in time.
Why did I put the blue sheet over it? I don’t know. I think I just wanted it to be ‘over’.
Tonight, as I removed it, and all the memories come flooding back in my mind of him in that chair and with all of the challenges he went through with quickening, worsening dementia, and all of the emotional challenges I faced while caring for him; it hit me hard.
I had been in a whirlwind of an emotional crisis since October 2024 ever since I flew back to Virginia, my hometown, to check on him after receiving some worried phone calls about him.
I could even say my emotional crisis started back in the summertime when he was having symptoms that I didn’t know were symptoms of dementia. I thought he was being mean and cruel by his angry outbursts, his yelling at times about stupid things, his acting as if I wasn’t even present, much less alive. His behavior of pacing back and forth between the kitchen and the family room, blasting the TV and this time getting angry when I’d ask him to turn it down, and his refusal to wear his hearing aids or even admit to a Dr that he had a cough when he did.
I started to slowly notice something wasn’t right at all.
In October, I decided to go visit him and investigate as to what was going on. I usually always told him when I was coming in and sent him the flight itinerary. This time I didn’t. I was hearing so many concerning things about him from other family members and from his companion, including having been in two parking lot accidents, and being banned and kicked out of one of his favorite nearby restaurants due to him not having money to pay for his meals.
The tears are coming again as I type this. Poor dad. As I was trying to figure out what was going on after I got there, I found two one-dollar bills in his little wallet, and he thought he had money to pay for things. I later found out too that his bank had frozen his credit cards and that’s why he couldn’t use them at the time. Yet, he couldn’t understand any of that. He couldn’t understand he didn’t have money. He couldn’t understand what the bank had done or how to fix it or anything. The dementia had taken over his brain and body and his comprehension was long gone. Bless his dear heart.
But, before this happened and before I had gotten to Lynchburg, his sister and companion had taken his car keys and hidden them. They didn’t want him to drive, understandably.
I talked to his companion this time (instead of him) about picking me up and when I’d be in; not telling my dad like I usually would have. Partly, too, because I had also noticed in the summertime when visiting him that it was very hard to communicate with him. He didn’t understand much of anything. I noticed some things were weird and off but I didn’t know what was going on at the time.
When I landed and met him and her by the airport door, I was in complete shock at what I saw.
There he was, my dad, looking like a homeless person. I was so shocked. My heart dropped. His hair was greasy. His shirt and pants had many stains on them. He and the van smelled like urine. It broke my heart to see him this way.
Still, I had no idea it was ‘dementia’ that was the problem. I was in such shock I didn’t know what to think. Not only was I observing him to see what all was going on with him, I also immediately had to start putting out a lot of fires while I was there because of things he was doing and didn’t know he was doing.
As I watched his behavior, and as I talked with his sister/my aunt and my sister a lot, we determined it must be dementia. I had read some of his health papers a year or so ago when I started going to Dr appts. with him in order to take notes for him to help him remember things. On one piece of paper, it said ‘frontotemporal dementia’. I didn’t know anything about it. I should have looked it up right then and there, but I didn’t. That’s why I didn’t recognize symptoms when they were occurring in him. Looking backwards, I can kind of see how or when it might have all started with stage 1. I don’t know exactly of course because I live far away from Virginia. So, I wasn’t there to see daily changes for years and years or anything like that.
In October 2024 I began doing tons of research on this thing called dementia and alzheimer’s . There are three stages. He was definitely in the last stage. The choking on food, the drastic changes in behavior, the pulling away from people, the incontinence, the inability to comprehend, the inability to make rational decisions with money and other things, it all was starting to make sense now. Plus, he had fallen so many times and was constantly getting hurt from the falls. Now I knew he wasn’t being a ‘jerk’ to me on purpose in the summertime, it was that his brain was being eaten up with dementia and it had overtaken his entire personality because that’s what it does. It robs a human being of everything from head to toe. He wasn’t doing anything on purpose. It was the disease taking completely over his behaviors. Now I had understanding and now some of the anger I had had turned to compassion.
It's still not fun when a dementia person acts out at you. That’s for sure and it still hurt, but when you know the real reason behind it, it helps. But I still had to take time out to myself and put a little space between us because that shit isn’t easy to deal with.
I decided to take him back to Spokane with me while I continued to get his finances back in order among other fires I was still trying to put out. I work full time also and so I was in quite a jam. Although I was stressed to high hell, I went into warrior mode. I was able to get shit done, figure shit out on the fly and not hesitate.
I didn’t hesitate to bring him home with me either. At first though I did wonder how it would work since I have a small apartment. But I knew what I had to do and that I would make it work. I knew I could not and would not leave him there by himself because I could see he was unable to really care for himself anymore. It tore me up in my heart. Thankfully he was willing to go along even though we thought perhaps it might be just for the holidays, but I think I knew better than that.
It was not normal traveling in this situation. I had gotten a wheelchair to take and fly with us. Turns out, the airlines allow a wheelchair to be tagged as gate to gate meaning it would be waiting for us at our gates once we landed so we’d have it immediately. That was wonderful.
Then, too, they asked if we wanted an ‘aisle chair’. And I was like what is an aisle chair? I’d never heard of it. What it is, is a skinny, super skinny version of a wheelchair, with lots of extra buckles on it that can be wheeled down the little aisle of an airplane, and it also comes with airport staff as helpers. They transferred him from wheelchair to aisle chair, buckled him all in safely, used extreme care, rolled him onto the plane, helped him in his seat. That aisle chair helped him since he couldn’t walk much at all and shouldn’t be trying to walk as he could barely stand up let alone walk.
Since we had this service, and I had signed up for it when I bought our tickets, we had great airline helpers. Since he used the aisle chair, we were the first ones on the plane and the very last ones off since it required many helpers, took space, and much needed time to do all that without other passengers in the way.
With our extended layovers though it wasn’t a problem, and I was so grateful for their help. I never knew they offered all those services. I was impressed, relieved, and so incredibly grateful.
When we were at one restaurant in an airport, when he still was eating a little bit, we noticed these young men in the white sailor suits. About 15 or so young men in a group. They were in the Navy…and they looked like they were 12! My dad was in the Navy. At one point, I turned to one of the young men and said, ‘my dad was in the Navy, too!’. He smiled and immediately told my dad ‘Thank you for your service, sir’. A few minutes later, they started to leave the restaurant. I’m not kidding, as each young man walked past my dad, each one of them said “thank you for your service, sir”.
That was a very magical moment. I like to think my dad’s spirit heard it and understood it, even if his ‘meat suit’ couldn’t.
We arrived in Spokane. He got to spend Thanksgiving and Christmas and even his 82nd birthday here in Spokane. He got to see all four of my grown kids and got to see my Gbaby which is his Great Gbaby!
Little did I know the challenges I would face as not only a full time caregiver to a grown male who had dementia, but also I was trying to work a full time job. I eventually got on state leave with pay for taking care of a family member and wished I had done it sooner.
There are so many things that I experienced that broke my heart along the way of how quickly dementia took over his body and brain that I can’t mention them all here. I’m still in utter shock about what I saw and experienced and witnessed and of what dementia does to a person and all the different things that happen as one deteriorates and deteriorates fairly quickly. It’s still shocking when I think about it and see it happening in my mind’s eye.
I quickly figured out what all I needed as a caregiver: waterproof under pads, men’s depends, men’s underwear guards for extra protection, comfortable basketball shorts that can quickly be changed, t shirts (his favorite thing he mostly wore), plenty of blankets to keep him warm, pillows, disposable gloves, good smelling body powder, deodorant to spray on him, Vaseline for spots that were getting soars, and the like. I had a routine down pretty damn fast. I like to think it made him feel good and a little better knowing he would get fresh clothes and nice smelling powders and sprays each day even if he didn’t really know what was going on most of the time.
I got him headphones to listen and blast the tv like he wanted to so that I could work without hearing it blasting.
I made sure he had his medications, food, liquids, even if he didn’t want them.
I took him to the urgent care (well, the ambulance did) when he had a black, tarry, thick, runny like substance coming from his underwear because that scared the hell out of me. That was the last time he had a bowel movement. It wasn’t long after that that he passed.
There are many other things that come to mind, but I won’t share them all.
Just know, it breaks my heart thinking about them because he was so frail, and I watched him get more frail before my very eyes. It was so shocking. It was heartbreaking. It took an emotional toll on me.
I am just so glad I got to be here with him and that he didn’t have to die alone or with strange people.
His birthday was January 1. He was 82. I gave him a t-shirt gift that said “God has blessed me for 82 years” on it with a bunch of colorful streamers. He got to wear it one day. He tried to wear it the next day, but it got wet from when he had pulled down his pants (another symptom), so I had to wash it.
He was in the Hospice for one day.
I got the hospital bed on January 3rd. I gave him the medicines that Hospice said to give him. Also, on that day I had agreed to have a Chaplain come over, because dad had been a religious person. I knew he would enjoy the visit even if he wasn’t really aware. The Chaplain came and we talked, and he talked to dad a bit. He sang to dad part of “Amazing Grace” and prayed with him and shared scripture with him. He rubbed his arm and told him it would be okay.
I think that gave my dad the peace and the calm to let go of this world once and for all. I think it calmed his fears. For, when I woke up the next morning, I found him not breathing on the hospital bed that had been arranged in my small living room.
I felt his chest. No movement.
I felt his neck pulse. No movement. And felt a little stiff already.
I felt his forehead. It was very cold.
I just watched him and sat there in silence.
I talked to him a few minutes and said goodbye.
Then I called my sister to tell her. That was so hard.
We cried together and then we laughed together thinking of certain memories with him or about him. It was good medicine for both of us.
As you are supposed to do if your loved one dies, I called Hospice to let them know. Thankfully I had spoken and met with several of them over that one day’s time because it helped calm me about what to do if the inevitable happened. I had put the instructions on my fridge even with a piece of tape so that if I couldn’t think straight at the time, all I’d have to do is read the lines on the paper. Hospice was amazing; the people I met.
I had already set up a cremation place ahead of time, too, and so Hospice even called them to set things up to pick up the body. They were all very kind and gentle too, like the Hospice people were.
I was even able to decide what would be cremated with him. I chose his 82nd birthday T-shirt, the bigger, softer green blanket, and a Navy (military) jacket he had ordered and didn’t wear much.
I know when I had called Hospice to report him not breathing, the nurse that came to my door, introduced herself and stuff, and then she just opened her arms big and wide, and I fell right into her arms to receive the big hug of compassion she was offering me. I’m crying just thinking about it. I was so grateful to have all of them around me to help me through this very difficult and bewildering time.
Rest in peace, dad. I know you’re with mom now in heaven and I know you’ve missed her everyday of your life. Now you two can be together again and give God a little hell. :) I love you both. I miss you both.
