My dad has a lot of health problems. He's 86 years old, has congestive heart failure, an abdominal aortic aneurysm, a right above the knee amputation from WWII and has had several TIA's, or mini-strokes, among other problems. Recently he had to have his gallbladder out which set off a chain of events that led to the need to make the previously mentioned decision.
In February, Dad, who had been having a lot of trouble with his gallbladder for many years, got to a point that it needed to come out. Usually a simple laproscopic procedure with minimal healing time. Dad, had decided that he didn't want any more surgeries, but his gallbladder had gotten to the point that it was a definite quality of life issue. He was feeling sick constantly, and it had gotten to the point that he was vomiting. It was time for it to come out. He agreed and they took him to surgery. The simple laproscopic procedure, turned into an open choleocystectomy. In other words, he had stones that were too big to be able to get the gallbladder out safely the simple way, so they had to open him up with a fairly large incision to remove the gallbladder. He made it thru the surgery very well. The anesthesia left him confused and dazed for hours though. He ended up pulling out the nasal gastric tube in the middle of the night. They chose to see how he did with it out before reinserting it. Luckily, he did well enough that it didn't need to be put back. That, however was the beginning of a long recovery process that led up to the new life turn.
Dad, now had a large incision on his abdomen, that would take about six weeks to heal. His prosthetic right leg, was held on by a belt that went around his abdomen. As I'm sure you can figure out, this was not a good combination. Therefore, he went home, with orders that he could not wear his leg. This was an issue. Dad had a pseudo aneurysm in his left arm years ago that had to be removed and left it weak. He hasn't been able to use his crutches since then. My dad's house is not set up for a wheelchair to be easily used, and what little it could be used he needed help. He couldn't get to the kitchen, the bathroom, or even his own room without help. My sister and brother both live with my dad, so between them for the most part, dad had the help he needed.
Until my brother got sick, too. He ended up in the hospital for the first week my dad was home. Life was turned into a whirlwind with that. My sister and I did the best we could to make sure dad was never alone. We took turns taking off from work. I would drive to Des Moines so that Stacey could work. We were both missing a lot of work. Even when my brother got home, he wasn't going to be strong enough to take care of Dad.
Dad's doctor offered a solution that seemed acceptable to Dad. The Veteran's hospital in Des Moines had a skilled nursing unit where dad could stay and recuperate. He was admitted to the community care unit at Vet's. This was a God send in a lot of ways. Mostly, because Dad was getting the care he needed and they were able to address some other issues. Including getting him a new leg, one which didn't need a belt around his abdomen to keep it on. He got physical therapy and occupation therapy, he looked better than he had in years! It also meant Stacey and I could get back to working normal hours, and Ben would have a chance to recover and get stronger before Dad came home and needed his help again.
Dad was there for six weeks while they built his new leg and worked on teaching him to put it on and such. Before Dad was to be discharged, there was a meeting. Dad's care team was all there. Dad and my sister were there. I was there via telephone. I was sitting in my car outside of work, listening on my phone, as the care team discussed my father. It started out well. Physically, he was doing fine, or as fine as to be expected with his medical conditions and his advanced age. His aortic aneurysm had increased in size, but Dad had decided against any surgeries to correct it. His recovery after the gallbladder surgery was very hard on him the first several days. He didn't want to go thru that again. He, understood that this could mean that the aneurysm could blow, and he understood that that could mean he would die. The doctors explained all of this to us. I supported his decision.
Then the physical therapist and the occupational therapist started with their evaluations. That is when the issues with memory started coming up. Some days, they said, Dad would put on his new leg beautifully, the next day, he would be trying to put it on the wrong leg. Other memory inconsistencies were brought up. Safety issues involving these inconsistencies were discussed.
Then the neurologist. Over the weeks, the neurologist had seen Dad several times. Tests were performed. Including cognitive tests. Dad scored a 4.0 out of 5.6 on his cognitive tests. That is when the words that changed all of our lives were spoken. The neurologist explained that Dad's scores on his tests indicated profound dementia. I felt my heart sink to my gut. Tears welled up in my eyes. I was glad I was only there via telephone so Dad couldn't see my reaction, but at the same time I felt more alone than I ever had before. It felt like I was in a vacuum, the words profound dementia echoing and pounding inside my skull. Like the words were trying to escape from a locked room, if they did escape then it wouldn't be true. Unfortunately, the room had steel reinforced walls and there was no key to unlock it. The words, like the truth, could not escape. They just kept bouncing around in the room, bashing against one wall only to ricochet to the opposite wall. While there was no way out of the locked room for those words, two other words seemed to be able to enter, adding to the chaos. The two new words that found their way in to the room, nursing home. The neurologist started going on about how Dad could not be left alone. That he needed 24/7 supervision. He was pushing and pushing hard for a nursing home. Dad was 100% against that. He wanted to go home. My sister working full time, could not be there for dad 24/7. My brother had to be taken out of the picture, he had his own medical issues and could not be counted on to be able to be there for Dad either. Even with both of them there, constant supervision could not be guaranteed. Nursing home, nursing home, nursing home... the words kept getting bounced around like a ping pong ball from one care team member to another. Except it felt more like a cannon ball in that locked room inside my head.
Finally, I got my head wrapped around what was being said, "wait," I said. "Dad, what do you think of all of this?"
Dad, bless is heart, has always been the agreeable sort. Not usually one to stir the pot, not one to go against the doctors. Something, honestly, we used to get Dad to agree to go to the VA's community care in the first place. We had his doctor call him and tell him that she thought it was best for him. When she said it, he was ok with it. When I asked him what he thought, I didn't hear anything. I then asked, "Dad, if it is a choice between coming to live with me and Willie, or a nursing home, would you want to come and live with us?"
Then I heard Dad's voice, for the first time since the meeting started, "oh, yes, I think that would be ok."
Those words set into motion changes that were unexpected and moving quickly. This meant, for me, I would have to quit, one of the few jobs that I have ever had, that I actually liked, and less freedom to leave and take photos on a moments notice. For WIllie, less privacy and less freedom to do what he wants in his own home. For Dad, it meant leaving the home he spent the last 50 years in. One he worked most of those 50 years paying for. One he raised his kids in, lost his wife in. Where he lived, laughed and loved in. As well as a little yelling, scolding and spanking of three unruly children. A place he could not return to live. A place that would now only hold memories. While my brother and sister would still live there, Dad from now on would be a visitor when he would go there. His home was now with me and Willie.
Dad's memory problems had not been a surprise to me. When I would go to visit him he would sometimes have trouble finding his words. He would tell me the same storied over and over. He might call me by my sister's name now and then. At times I would have to correct him when he would tell Kahlen to listen to mama instead of gramma. I thought it was fairly normal aging. He is 86 after all. I have problems finding words at times, and Lord only knows how many times my kids got called Val-Jos-Alys... I get the mixing up names thing. Recently, though, Dad has been calling my brother, by my uncle's (his brother) name, something I just started noticing while he was in the hospital. My sister asked if he had called me by my mother's name, which he hadn't, but makes me wonder if he accidentally called her that. I didn't realize how much his memory had changed. I didn't know it was enough to be classified as dementia.
It is starting to make some sense now though. My uncle died ten to fifteen years ago, for Dad to suddenly start calling my brother by his name.... My dad has always thought of me as younger than I am, but sometimes I think he thinks Kahlen really is my daughter, that she is Alyssa. Right now, I can easily correct him, but I wonder how long I will.
When I went to see Dad after the meeting and before he was discharged I asked him again if he was ok with coming to live with Willie and me. "Oh, someday I suppose..." was his answer. I looked at dad, he had forgotten about the meeting. I had to remind him that it wasn't someday any more. That when he was discharged from the hospital that he was coming to live with me. His face went blank. His memory jarring. Then it went sad. He had to learn again that he wasn't going home. After that he started talking to me about what needed to be done, what he wanted to bring with him. Acceptance. He didn't have to be reminded again, that I know of. I did ask the nurses to kind of bring it up to him now and then. It would be two weeks before his discharge so I could give my notice at work. I didn't want him to have to go through the sadness of it being new to him again.
Moving his stuff went smoothly. Amazingly smoothly, considering we couldn't get a rental truck. We got his things set up in his room. The only thing left was to get him there. I was worried the day that I picked him up that he might have to be reminded again that he wasn't going home. I worried needlessly. He was ready to leave and knew where he was going. The drive to our house went well, he wanted to stop and get a milkshake through a drive thru on the way.
We got him inside. Which wasn't the easiest thing. I had to wheel him around the house from the drive way to the front. There are three steps into the house, but only the front has a handrail. He was still not back to his normal strength, so he got back in the wheel chair, and I wheeled him in. I showed him his room, the bathroom and the kitchen. The bathroom was a little tight with the chair, but it still went through the door. He got settled in and the first day went smoothly.
There have been adjustments. Dad is getting more and more comfortable, I think. He likes to go for drives now and then, which is good, because I get a little stir crazy. He doesn't like having to get out and get back into his chair though. Sometimes I think he forgets that we have the chair with us, that he thinks he'd have to walk. I remind him, but he still thinks it is too hard. So, we just drive. Hopefully, as he gets stronger, he will be more open to getting out of the car and riding around in his chair. We are waiting for a ramp to get approval from the VA to be built on the house. When it gets easier to get in and out of the house, I hope he will let me take him for walks, me walking him in the chair, around town. I hope.
Oh, and Dad and Bazinga? Best buds! Mia is still in hiding.