memory

For a couple years I have been nostalgically thinking about an animated movie I enjoyed as a child, The Snow Queen. It is a Hans Christian Andersen story about two children Gerda and Kay, who are best friends in love. The Snow Queen casts a spell on Kay so that his heart turns to ice and he stops loving Gerda, and she whisks him away to her cold palace. Gerda goes on a quest to rescue Kay and encounters various perils along the way. I remember as a child thinking it was so cool to see the girl character rescuing the boy and how scary the movie seemed.

A few weeks ago I went ahead and ordered the DVD and watched it while my husband was out of town. It was a little disappointing. Although the Snow Queen herself was still very scary, Gerda seemed tentative and silly, doomed to failure without the help of minor characters along the way (luckily near the end she womaned up). Even more distressing was that one of the scenes that I vividly remembered was completely different from how I remembered it. My memory had played a trick on me.

For several weeks now my dad off and on talks about his son. He does not have and has never had a son. My mom, sister, and I have all experienced these conversations. Sometimes he tells workers at the nursing home that he has two sons and no daughters (he actually has two daughters) and insists upon this even when they gently challenge him on it. One time he wanted to know who was living in the house with my mom. We told him Mom is in the house by herself, that my sister has her own house and I have my own house, and he asked what about the third child. (Side note: We refer to my parents’ home as “the house” instead of “home” when we talk with my dad, the idea is to subtly help him think of the nursing home as a home.) Then one day he was very concerned about getting to court to help his son, and another day he was convinced that someone had kidnapped his son.

I thought that maybe Dad was confusing the terms for family members, like using “son” for “grandson.” During the kidnapping incident I asked him how old his son was and after thinking about it a bit he said “9 or 10” — my sister’s son is almost 8 and big for his age. Also there was that time that I was telling Dad about a project Scott (my husband) was working on and he turned to my mom and asked her “is Scott your husband?” I have never admired my mom more than that day, when she responded by patting him gently on the forearm, smiling sweetly, and saying, “no, you’re my husband.”

Is my dad forgetting the words for family relationships, or is he forgetting the relationships themselves? I am almost sure he knows I am his daughter most of the time (I give him a big clue by greeting him with “Hi Dad!” and a kiss). It honestly isn’t important to me that he knows who I am as long as he recognizes me as someone familiar and likable — as long as his heart hasn’t turned to ice — but I’m glad for him if he is able to remember that we belong to each other and love each other.

 

 

 

 

expectations and hopes

Before I went on vacation at the end of August I was frantically coping with parent stuff. First of all, my dad suddenly got delusional as a result of a urinary tract infection. I was visiting him by myself and he started talking nonsense about mounting a hostile financial takeover against someone. Then he looked me in the eye and said, “I’m going to find all of the evildoers and punish them– no matter who they are.” Then he said, “I’m sorry if I hurt your feelings by saying that, but it had to be said.” I couldn’t escape the conclusion that I must regrettably be one of the evildoers.

Also before I left, we were informed that since my dad wasn’t cooperating with physical therapy, and his followup with the hip repair surgeon didn’t indicate any medical reason for it, the nursing home was changing his status from rehab patient to resident. This meant that Medicare would no longer pay for his stay and we had to apply for Medicaid within three days. I am the go-to person in my family for completing forms, so I scrambled to pull the application together. (I will write more about the practical aspects of that after we hear back from Medicaid.)

Dad is no longer delusional but is still confused. Some days he doesn’t help the aides when they need to transfer him, making the transfer very difficult. I don’t think it’s because he doesn’t want to be transferred, I think he’s either confused about how to operate his body or he thinks that they can do all the work without his help and he just doesn’t feel like helping. Some days he’s more helpful.

My visits with my dad since I got back from vacation two weeks ago have varied. My first visit he was unable to complete sentences because he would forget what he wanted to say. Another time he told me when I first got there that he had talked about suicide with someone and it wasn’t going to be a problem. He was very cheerful about it and I was pretty sure he didn’t mean suicide but I had no idea what he really meant. I just said something like “well not a problem is good,” and he said something like “yes it’s the best.” I didn’t tell my family about that one and it hasn’t come up again. Since my dad isn’t terminally ill I’m pretty sure no one has talked about suicide with him, and besides assisted suicide is illegal in the state he lives in.

On another visit, we played a game called Rummikub which is like playing rummy with cards except you use tiles and it’s slightly different. He played pretty well. After the game ended, he got an anxious look on his face. He said “there’s something wrong with me.” I told him he had a stroke and sometimes it’s hard for him to find the words to say what he wants to say. He asked me when he had the stroke, so I told him. He thought very hard and then he said, “I played Rummikub… and I still play Rummikub.” He seemed to feel grounded a little by that thought.

One time my mom was sick and unable to visit. I told Dad that she wasn’t able to come that day. He asked how he was going to get home. This expectation that he is going home has come up before. Sometimes we tell him we can’t take him home because he can’t walk yet (we still cling to the ‘yet’ in these conversations). This time I just said that it would be fine for him to stay there until tomorrow. He said okay but later he asked the same thing. He patted his pockets and said that he didn’t have the house keys. I said Kris (my sister) had some and he said “what good is that, she isn’t here.” I finally just said, “I think it’ll be okay, Dad,” and he said, “well I don’t see how.”

In a previous post I said that I didn’t know if it was the stroke or being in the nursing home or his meds that were causing the confusion, or all of the above. I got a list of his current meds from the nurses at the nursing home. He is no longer on any narcotic painkillers, just Tylenol. I found an online drug interaction checker where you can put in all of your meds and then it will tell you what interactions can happen. Nothing glaring popped out at me to explain his confusion but I’m going to study it some more. I know that an online tool is not the same as a doctor and possible interactions aren’t the same thing as actual interactions but still I feel like it’s worthwhile to take a look at this.

I have a thing lately where I try to avoid talking about “goals.” I’m trying to maintain an openness to things as they are. But despite myself I would like for my dad to be a little more mentally engaged. I’m not sure what I mean by that. I guess I’d like him to be a little more aware of his surroundings, recognize and talk to the other residents, help consistently when the aides transfer him. Know where the sitting room is and the activity room is and get himself there when he wants to; they aren’t far and he has learned how to power his wheelchair with his good foot– slow but effective. The last time I visited he had me flip through the tv channels one by one so he could see what was on. Then he settled on one and read the newspaper comics and kissed me on the cheek when I left. He seemed happy.

we can both pretend that it is real

Yesterday I visited Dad in the nursing home. I hadn’t seen my parents for 2 weeks because my husband and I had gone on a camping vacation. My mom and I were going to meet at the nursing home in the afternoon.

I got there before Mom. Dad was sleeping in his wheelchair outside the nurse station. He is a big-framed man, he is 6′-3″ but seems taller. Maybe because he is high-waisted with long arms and legs. He isn’t skinny or fat. It takes at least 2 aides to help him stand in order to change him or shower him. Often they use a hydraulic lifter to get him in a standing position from a sitting position.

Dad was slouched in his wheelchair, butt scooted to the edge, his long legs stretched out in front of him, chin resting on his chest, hands folded on his belly. He looked slimmer to me, which is good. I sat on a nearby couch and watched him sleep. The nurses and aides buzzed around the room, weaving expertly between wheelchairs. A number of residents slept on chairs and recliners, bundled in comforters. A woman caressed and cooed to a baby doll.

Dad woke up. I gave him a minute to get his bearings; I’d heard from my mom and sister that he’d had episodes of confusion and paranoia while I was gone. When he saw me, he seemed to recognize me although he didn’t say my name. I kissed him and told him I had missed him. He said “I bet you did,” which was a good sign. The person my dad used to be was always a jokester.

We sat outside on a little 2nd floor porch they have which is a quieter place. It was a beautiful day. Dad tried to talk but lost his train of thought mid-sentence each time. So we just sat there and watched the flag wave in the wind. He spotted my mom arriving in the parking lot. She joined us on the porch. Mom showed me a notice from her auto insurance agent saying that her premium went up 25%. I told her that I’d look into it.

Well I won’t give you a play-by-play here but there is just one thing I wanted to mention. We decided to stay for dinner and Mom went to get food for her and Dad. I was already thinking about the car insurance issue and trying remember the different kinds of coverage there are. I wasn’t having too much luck so on a whim I asked my dad about it. And something beautiful happened. My dad got a familiar look on his face, an intelligent and confident gleam in his eye and he started to explain it to me. He waited for my “aha” of understanding like he always has, and nodded quietly when I gave it, which is what he always did. It wasn’t really an explanation, just a jumble of relevant words, but it made him feel good and it made me feel really good. I’m going to try to help us get that feeling again. It is easier when no one else is there because then I can just be with him and we can both pretend that it is real without someone else seeing that it isn’t.