When the kids were small, I always knew our best conversations happened in the car.
Strapped in seatbelts the kids tended to open up more about their lives; now Ralph does the same. We were driving home from a visit to his dermatologist when he brought up an issue that has clearly been bothering him.
“My IQ score has dropped,” he announced out of the blue. “Is that normal?”
“How do you know that?”
“I saw it on my chart last visit.”
I don’t know how he saw this nugget of information (or even if he read it right), let alone remembered, but I realize that problems he cannot sort out seem to get stuck in his brain, like gum on the bottom on his shoe that he can’t shake off.
“Well memory probably affects IQ results.”
“117 is still above average though right?”
“Right.” My heart ached with protective affection.
…xxx…
On the other hand, Ralph and I have always had our worst conversations at night when we are tired and Ralph has had some drinks.
So last night while I was trying to relax after a long day by watching mindless TV at the kitchen table, Ralph stormed out of the bedroom.
“What was the name of that real estate agent who tricked you into selling too cheap?”
I told him the names of the agents we used, one a friend of his. He grumbled some more and went back to bed, only to return moments later and begin to rant about how we were cheated and I should have known better.
He was talking about some property we sold in 2013, the year he got his diagnosis and was still half running things. He had chosen the agent and begun the negotiations pre-diagnosis; I had completed the deal post-diagnosis. Ralph and I had discussed the terms exhaustively. I didn’t want to sell the building at the time but he insisted.
Those months were among the worst in my life, a time I’d rather not remember myself, filled with my mother’s precipitously failing health, Ralph’s heightened, often angry anxiety over his diagnosis, our desperation to sell our business profitably, the sharp learning curve I had to master while laid up in a cast after I crushed my ankle falling on black ice. I did not necessarily make stellar business decisions, but frankly I handled it all pretty damn well considering.
In Ralph’s head last night, we had sold the property just weeks ago and he was obviously obsessing over the numbers (which he had wrong). As he began to berate me, I pretended to be absorbed in Saturday Night Live. In fact I was stewing in resentment and in memories of Ralph during the middle years of our marriage when I often felt he bullied me.
Then he switched gears.
“Where’s our money now? Who are those people who supposedly manage our investments? How do you know they are not going to take our money? You need to make sure they can’t steal our money.”
What I felt as he ranted was about as far from protective affection as you can get—hot white hate tinged with damp self-pity that I was stuck with him until one of us died.
This morning Ralph brought me coffee in bed, as sweet as could be. The conversation has erased itself from his brain as if it never occurred. I wish I could say the same, but I can’t.
…xxx…
*A side note: as we were entering the examining room, the nurse behind the desk said to another nearby, “The Alzheimer’s patient is here now.” I clearly heard and am sure Ralph did too, but neither of us brought it up, not even in the car.
Alice in Memoryland 
FWIW I don’t know that this offers any comfort, but I can tell you from my work with a variety of individuals who have experienced neurological changes altering their behaviors, emotions, memory, personality that they, too, sometimes subject their spouses/family to what you describe. The spouses/family experience the feelings you have, colored by pre-illness life events. Trying to remember “…it’s the disease, or the illness — not the real person” may be true intellectually, but I know how difficult that was for the loved one caregivers to internalize. The point is — your experiencing anger and hostility at times happens to more people than you can imagine — you are not alone — others would be understanding.
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Thanks for this. Thought it can be difficult, it is important to acknowledge the negative feelings that arise during caregiving so others know they are “not alone” as you say. You are so right that knowing something intellectually does not mean feeling it. And pre-illness events are different for every family. I am actually very lucky that Ralph’s personality has not darkened.
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I know and understand completely about being angry and hostile – it is just natural. We have 3 large bookshelves in the parlor with some books, antique clocks, pottery, lamps, etc. A while back Jim was pushing the shelves back and forth – I told him to stop or they would fall. He laughed and continued and everything fell – 2 antique clocks from France were broken, some crystal paperweights, a small statue given to me in Gabon (W. Africa) and so forth – I was quite upset. Then 3 weeks ago our eldest daughter visited us from PA and brought me a nice pen with a rubber tip to use on my cell phone. Stupidly I left it on the kitchen table 2 days go – Jim brought me the pen in 3 pieces laughing and saying “see what I did.” He has broken the closet light, the kitchen fan with light, 3 of my English China cups, crystal glasses, full wine bottles, and more things than I can list. I know it is his Alzheimer, but I still get pretty mad! In addition because of earlier work injuries arthritis settled in my knees. I should have had operations years ago but could not because no one could take care of me, and now they are bone on bone and super painful. I walk, slowly, with 2 canes. I’ll wait for Jim, standing up and tell him to hurry up that my knees are killing me – he laughs and keeps moving in slow motion (I don’t think he is mean, he just does not understand and laughs a lot.) He did push me in the backyard before Christmas and I could not get up for 3 hours. I then developed pneumonia, but never could go to the doctor (no one around Christmas.) Was in bed 3 weeks, using Chinese deliveries – Jim totally oblivious to it all. This is why our younger daughter wants us to move to TN. We bought a house in Nashville. I’m having one knee operated on this summer and I hope that we’ll move totally by next winter. But taking care of him, not moving easily, everything is going very slowly. But I have hope!
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The situation you describe is heartbreaking. The move to Nashville sounds like exactly the right move. Will Jim move willingly? You do need to be careful that your health is protected. We caregivers are clearly more vulnerable because thinking for two drains our resources. My thoughts are with you…
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I think it is good that you do reveal your anger and hostility. It’s honest and truthful and is helpful to others who might think they are the only ones thinking such things. I don’t believe any of us caught up in this can behave like saints – we’re human.
It reminds me of an incident the other end of the spectrum. When I was working in Afghanistan a mother brought her baby to the clinic. He was emaciated because she couldn’t read the Russian instructions on the dried milk tin so was only putting a spoonful of formula in the bottle of water plus, she’d been feeding him opium because he wouldn’t stop crying since his twin sister died. We battled to keep him alive and get him off the opium. During a conversation I said when the baby kept crying she should hand him to a family member and leave the room for a few minutes. The mother said sometimes she was afraid she’d hurt her baby when he wouldn’t stop crying and thought she was the only mother in the world who felt this way. I told her there were times when almost every mother wanted to throw their baby out of the nearest window. She was astonished – ‘even foreigner mothers?’ – and so grateful to learn she wasn’t a monster.
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What an amazing story. And what an amazing life you have led. Thank you so much for sharing this. The fear of being a monster is universal, but the degree of suffering varies greatly. I can only imagine what that mother was going through on a daily basis. You have a reminded me to keep my situation in perspective.
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It would be hard I think to have your husband worry you about finances. I can understand that it would be stressful. My husband Jim never talks about money (he was never interested either before his Alzheimer.) But it is stressful to be with him 24/7 and never being able to go anywhere alone. I love it when articles tell you to accept any help when offered – no one has ever asked to help me! At Emory Brain they tried to find places for me to leave him for a few hours but they are in east Marietta, about 1 hour+ away, which would take 4 hours of my time going back and forth (We leave on the Paulding County line.) Unless people know someone with Alzheimer they have no idea how difficult it is to be a caregiver 24/7 with no support at all. Jim has had Alzheimer now for 9 years or so, but it has progressed very slowly. I read that in my other country, France (I am a dual citizen) they passed a law in 2015 to help caregivers. They give you extra funds to take time off, get some help (free.) In Holland they do the same – from the government and also from the city. I am so surprised that in the US nothing is done nationally to help with care giving as it is in most European countries and wonder why. My oldest grandson (10 years old) said that in school his teacher told his class the USA had the best healthcare in the world. Really?
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Reading your note, I am aware how lucky I still am that I can leave Ralph alone for hours at a time as long as he has his routine and reminders. To be with Jim 24/7 has to be a terrible strain. I am aware from bloggers abroad that other countries offer much more support than the US–sometimes I have to laugh while reading petty complaints about their free caregivers. While the support groups that meet at Emory can be emotionally useful, what you need is nearby actual support. Those of us who live in rural areas (I am an hour south of the city), have more difficulty finding outlets. But you might speak to the Emory social worker Susan about someone who will come to your home. I know she once mentioned there were such individuals around. Best of luck.
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In the UK the Conservatives say if they win the forthcoming election they will allow caregivers to take a year out of work to care for a family member – that’s unpaid leave! It makes me ashamed.
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You’re an inspiration to me. My dad has Alzheimer’s and while everyone is different, I’m finding a lot of commonalities between him and your husband. I’ve learned to live more in the moment and ride out the sometimes confusing trails of thought, but I expect it will never be easy. However, for good and bad we’re in it, right?
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Thanks, Ronda. We all inspire each other by sharing. Sometimes the tough moments are hard to discuss, but they need to be aired too. I appreciate you writing.
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Thank you so much for sharing your life. Since I’ve found you and your followers , I know I’m not along in my husbands MCI. I feel comforted by all of you. There is really no one to talk to about this disease. I’ve been so afraid to share.
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Thanks for sharing this Alice. Such a terrible disease, and it is so hard to be a witness to our spouse’s dying brain.
Such a range of emotions we experience during and after one of these experiences! And the accompanying stress that results, is just downright depressing.
Sometimes it helps me when I remember that it is the dementia that is speaking. In the heat of the moment, it is easy to forget this, and our gut reaction takes over our emotions.
Hang in there. It’s so good that we have a safe place to share with each other.
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I appreciate your comment. I know that Alzheimer’s really doesn’t allow the heat of the moment reaction I might have had in the past–but probably shouldn’t have even then haha….
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We had some fights a couple of years ago with totally uncharacteristic bitterness and paranoia, which frankly frightened the hell out of me. All vestiges of the closeness and benefit-of-the-doubt which we had been able to rely on in past conflicts disappeared. Then next morning, all would be “well”….in J’s mind. I’d still be trembling in astonishment at what had happened the night before.
That period passed, though, to my equal astonishment. Wishing you strength as you make it through this phase with Ralph.
Thanks for writing and for the honest representation. Hang in there.
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Thanks for this, and for reminding me that my experience is shared by others…a fact easy to forget in the heat of the moment.
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We aren’t there yet but my heart breaks for you and I will feel the same as you do when the day arrives.
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Thanks so much. I find it difficult to reveal my level of anger and hostility toward Ralph, but I also know I cannot pretend it doesn’t exist.
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