What Should I Say?
This has been a week with very little humor, hence I have not written for many days. It is hard enough to live through some moments in person, without recording them on paper as well.
There is no question in my mind that Hubby is on a downward slide. He begins a sentence, and mid-stream changes the direction that he was headed, ending up with a thought that is totally unrelated. I am trying to follow what he is sharing, and get lost halfway through. He looks at me expecting me to respond. I have no idea what to say. This is happening more and more.
Hubby will start talking about someone, unable to remember their name, and expect me to know what he is thinking and fill in the blanks. He not only does not know the name of the person he was beginning to discuss, but cannot remember why he wanted to mention that person,whoever he/she is. It is so hard to explain how emotionally difficult it is for us both, for very different reasons.
It is hard to respond when one has no clue what is intended to be communicated. Saying “I don’t understand” is a bit cruel because he cannot explain what he intended. What should I say? I nod my head and smile, not knowing if either of those responses are valid. G-d bless my husband’s sense of superiority. When I do not understand him, he offers the retort “Why, are you stupid?” No sense of his own inadequacy in communication. This is actually a blessing of sorts. He is not depressed by his reduced abilities. It is me who is to be pitied. I can live with it, but could do without the insults along the way.
Hubby just suggested that I should “get married.” Perhaps he was saying that we should get married? Either way, it was unrelated to anything. Should I play along and say that it is a good idea? Should I say that we are already married for 48 years? (I repeat this fact many times a day and he sometimes retains it, obviously not at this moment.) I smile weakly because it is all that I can muster. The subject of the next sentence will be totally different.
When Hubby returned from the bathroom, he explained to me that he spoke to someone on the way, and asked if there was a Men’s Room nearby, but there is no one in the house with us this evening and he was going to the same bathroom that he uses every few hours. Once again, I am speechless. Friends who know me well will scratch their heads in amusement as I am rarely without a response to contribute to any discussion.
Hubby mentioned a small dog that he just saw. I repeated his words to be sure I heard correctly. He nodded his head and agreed with me. But we are in his bedroom and there are no animals within these walls. (Although I would love to have another Shi Tzu, if only they did not need to be walked three times per day.) His fleeting thoughts are verbalized and then dropped. What should I say? What should I do? I am not a good actress, not good at playing games with anyone, so I look at him and give a weak smile. It is beyond my creative ability to communicate on this level.
For the first time, I began to think about what friends have said to me recently… really close friends. They fear for my health. I actually do as well. I simply only have the energy to actively care for one human being, and Hubby is a full time commitment.
The stresses of having to respond to another’s disconnected thoughts, all day long, is taking a terrific toll. Well-meaning friends ask if I would be able to put Hubby into a home to relieve myself of this humongous responsibility. I cannot envision how he could survive without someone by his side 24/7. If he is cold, he will tell me that he is cold, but he will not pull up the blanket next to him to be warmer. If his mouth is dry and he can barely speak, he will not ask for a drink. I need to see that he is having a problem forming his words and give him the liquid. When he takes his pills lately, we notice that he has begun chewing them. He now must be reminded to swallow and not to chew (do chewed meds actually work their magic?) Thus, even these are tasks which needs our attention.
I cannot help but wonder how depleted a spouse or family member must be to put their loved one in a facility where their needs most certainly could not be met most of the time. Still, others remind me constantly that I am trading my own health for his. At some point I will need to figure out how to continue his care in our home, without it draining me of my own lifeforce. This is a dilemma all families wrestle with when caring for a loved one with any of the variations of dementia. Their conclusions often depend on the amount of support that they receive from doctors, family, friends and the social services on offer in their area.
I took a break from writing to get a bit of sleep. It was not easy. Hubby could not stop talking about his latest fantasy – that we are selling our home. He keeps analyzing how many rooms we have, and believes that someone is coming in the middle of the night to see the house to decide whether to purchase it. I could only take the meandering mind for about a half hour and decided to give him an additional half of a pill prescribed for these occasions. I asked him if he could please stop talking. He responded that he could only stop talking if I would leave the room. I did just that. I turned off his bedroom lights. I was mentally frazzled, no easy sleep for me.
At 6 AM I heard hubby call out with great distress and great volume. Looking into his room while rubbing the sleep out of my eyes, I discovered him sitting on the floor and yelling at people I could not see. How he fell into a sitting position is still a mystery. He was angry that “all the young men” would not come and help him to get off the floor. He was furious that they had no manners and would not speak to him. I was stuck with a difficult situation. I did not have a substitute aide this evening. I cannot lift Hubby and had to call Violet although it was her day off. She was awake in her apartment on a very early Zoom event and responded “I am in the middle of Church right now.” My retort was “Hubby is in the middle of the floor right now.” I was sorry to have to call her, but she was hired with the understanding that even on her days off, she could be called in an emergency. She came quickly helped me to lift hubby to a chair and then returned to her Zoom service.
Hubby was still angry with all the men he could see who did not help. I made the mistake of telling him that there was no one there. That infuriated him. I should have known better. Sometimes I forget my own rules of behavior. It is one of my weaknesses.
He could not stop talking about the people, eventually he calmed down from sheer exhaustion. It was now almost 7 AM and I was hoping that he was drifting off to sleep… his monologue was waning… as was I.
A personal note:
I hope you have enjoyed this chapter. There are many more waiting for you. Please visit the home page of: thedementiadiary.com – to read the chapters you may have missed in The Diary! (Don’t overlook the Resources section, the subject index and some of my favorite Diamond family recipes!). You are invited to subscribe to receive a new chapter by Barbara Diamond every week.