A friend called to offer condolences yesterday concerning my mother’s death. Having cared for her mother for several years, she reminded me that people who have not been through the experience don’t realize the amount of energy expended. Then she added, “At least you will have new energy now that you are done being a caregiver.”
Not quite. As I explained to my friend, my caregiving has just begun.
Just the day before her call Ralph and I had gone to the Memory Center at Emory for his six-month check up. Although it did feel a bit odd heading out only two days after my mother’s death, these appointments are like gold and I was not about to re-schedule.
It was a rough visit. Although Ralph did not have to take the big battery of tests this time, our NP Stephanie did one brief test, giving him a name and address that he was to remember. A few minutes later he had no clue what she had told him to remember. She offered a clue that might have tipped him off that the last name was his, but it evidently didn’t help since he made a wild guess.
This small memory failure felt more demoralizing than all the previous results we have received over the last 18 months. It was so stark: no retrieval was possible. The box where he’d stored the memory was simple empty and he knew it.
Also upsetting, although a matter of stating the obvious, was Stephanie’s warning about driving. While Stephanie reiterated that Ralph’s motor skills and problem solving are still fine, she said he should limit driving alone because she’s had “dozens” of patients at his level of cognitive ability who became dangerously disoriented when something on a usual route changed; confusion combined with anxiety caused them to drive off course, sometimes for hundreds of miles. “We don’t want to lose you,” she said gently. The truth is that I already do the driving when we’re going anywhere together these days including his last two fishing trips to Florida—actually, the time before last he drove, took a wrong term and got us lost before I used my phone GPS; I drove us down last time. We hadn’t talked about why I’m the driver though and now it was out there on the table. Stephanie agreed he could still drive himself to Atlanta for his weekly therapy appointment, but the writing is on the wall. And Ralph could read it perfectly well. He looked beaten down even as he smiled in jovial agreement.
Then there was the discussion of activities and depression. Ralph’s lack of activity worries her. She has increased his dose of anti-depressant and he reluctantly agreed to sign up for an art class and to go out with me one night a week. This was major: although Ralph, who has some genuine talent, always said he was looking forward to painting in earnest once he had some time, he has not picked up a pencil or brush for two years. I have nagged him about classes of course, but he has refused. I’m glad he has finally agreed, but his meekness was disconcerting. I know that my own emotions are on edge as I deal with my mother’s death, but I could tell that Ralph was processing Stephanie’s words differently than he has in past meetings.
As soon as we were back in the car, he turned to me and asked, “How long do you think I have?”
To live with a modicum of dignity and awareness was the unspoken second half of the question.I answered the only way I could. “I don’t know.”
Then I drove him home and dropped him off before heading to the funeral home to pick up my mother’s ashes.
Alice in Memoryland 
I just found this blog and am overjoyed to find like minded wives. My stepfather’s funeral was yesterday. I was his poa and managed his many hospital and Dr trips in the last two years, besides moving him and my mom 5 times in those two years. But he was “there” with me when I saw him. Joking and chatting. And when my mom was in the room he always wanted to hold her hand or give her a kiss. My husband is nearing 70 and I don’t know if he has mci or early alhzeimers, but he is not able to understand my teasing or joking, and I have to beg for his affection. Just reading your blog gives me hope in my abilities to cope. The fear of the future is so overwhelming sometimes. I look forward to reading more. Thank you.
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Matilda, so glad you found me. And we both apparently live on farms. Have you had your husband tested? Is he aware that he has changed, or will to acknowledge his awareness. The fear of the future is overwhelming at times, but I found that having a diagnosis was strangely helpful. There are many of us spouses out here, struggling along (both caregivers and caregivees) and hearing about others who are coping is also a big help.
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So sorry about all of this. I know it’s difficult to deal with your mother’s death, but I had the same situation with Mother dying two years ago, and there really was a sense of relief when I only had one person to focus my caregiving on. And I knew that she would have understood. She was so upset about Bo’s condition when I had finally told her that he has alzheimer’s.
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As usual, you articulate the situation exactly. Thank you again. I know I have said this before, but you really are my mentor down this difficult path.
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Giving up ones car keys is definitely a big speed bump on the Alzheimer’s journey, but as everyone can attest, so very necessary. My sister-in-law, diagnosed with early-onset, drove for about a year after her diagnosis. My brother justified her driving by saying, “She’s only going to the grocery store just two miles away.” It was on one of those grocery trips that she misjudged a right turn onto a very busy main thoroughfare – she thought she had plenty of time to merge onto that thoroughfare so that the large white van already going 45 on that road in that lane wouldn’t be any where near her. Her Prius was totaled, the van was damaged, but fortunately there were no injuries. “Well, at least we know for sure that she shouldn’t drive again,” said my brother. There’s a reality check that could have been so much worse. I’m sorry this journey of yours is so jam-packed with potholes. I wish only the best for you through this transition.
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It is hard to “like” a blog like this brcause the news is so troubling, but I want to acknowledge my awareness of your struggle. My dad’s cognitive deficit is probably worse than Ralph’s but we are only doing a formal assessment this next month, years into his Alzheimer’s diagnosis. This is partly due to the fact that I moved him from his traditional doctor in one state to a new geriatic physician in the new state. The geriatrician seems less concerned with assessing his dementia status than just maintaining his general health. However, I feel a need to see what his happening and how to prepare for whatever comes next.
Good luck to you and Ralph. I think it is harder with Ralph understanding his ongoing losses than with my dad who just seems to accept that he doesn’t remember things anymore.
What a difficult disease this is to deal with! Condolences on the loss of your mother. This is such a lot to deal with at one time! I hope you are able to cope with the competing demands on your time and mental energy!
Prayersnfir you both.
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Thanks so much for these kind words. I hope your dad’s assessment is helpful.
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