I meant to write about our last Christmas on the farm, about Ralph and his oldest son taking out guitars and playing together as everyone sang along on Christmas eve, Ralph thoroughly engaged for those few hours, how family and friends who’ve celebrated with us every year for decades and decades gave speeches at dinner that moved others to tears, how difficult I found it (still find it) to grasp the import because my bittersweet emotions were tinged with relief.
I meant to write but really once the 26th came, I was too embroiled in the present and future to worry about the past, event the immediate past.
It is the second of February and our movers are coming on the fifth of March. All my books are packed (minus the hundreds I donated to the library). So are most of my pictures, handmade glass and most of my kitchen. Next weekend I am driving to Nola with our bed and however much I can squeeze in a u-haul. I want the bed ready for Ralph when we arrive on the fifth to beat the movers who will show up the next morning.
The fact is that the practical issues are all falling into place. There are no serious glitches. The farm is under contract to my next-door neighbor who plans to put it into the rural preservation program. The movers are hired. The renovation is only a few weeks behind schedule and not too over budget so far. I have been able to get things done and keep up with my other work and with my social life. My days are full, but not overwhelming. In fact last weekend a friend and I organized our mutual birthday trip that will take place in May (with my son coming to stay with Ralph while I’m gone—a lot easier asking him to come to Nola than to the isolated farm).
I meant to write an update on all this because part of me is frankly proud of myself for pulling things off so well, but I haven’t until now. And lack of time has not been the real problem.
The real problem has been that since Christmas, I have been avoiding facing my feelings toward Ralph too closely. I do his life list, I make sure he takes his pills, takes his shower, eats his meals. But I have filled my days with chores and conversations and decision making that I deal with on my own. And while I dutifully, even obsessively worry about how I can make Ralph’s adjustment as easy as possible—from walking to the corner store instead of driving, to dog walking and poopscooping, to learning his way around a new house—I have felt basically numb where Ralph is concerned. Numb has seemed better than admitting the mix of resentment at having to do everything myself and exhilaration at doing everything the way I want without kowtowing to him as I did through most of marriage.
Or that’s what I have assumed. But then this week I was jolted out of my stupor. Early in January I contacted the neurologist who’d been recommended by multiple sources as the best in Nola for Alzheimer’s. I was told to have Ralph’s current provider, Emory, send a referral. So I called the social worker at Emory who told me to contact my medical provider for the referral. I used the portal that everyone must use these days to send a message asking for the referral. I didn’t hear anything back for over a week so sent a new message, this time to more than one of my providers asking what was up. Someone called me back the same day and said the referral had in fact been sent, I just hadn’t been told. I immediately called the Nola doctor’s office and was informed by the scheduling secretary that less than ten minutes before my call she had received a memo from the doctor’s nurse saying he was not taking new patients. I explained that I had just learned that Ralph’s referral had been sent in a week ago. She was extremely sympathetic and immediately messaged the doctor’s nurse who responded that she knew about us and would call me back“ shortly.”
I heard nothing that day. I called the next day. A different scheduling receptionist found Ralph in the computer as having had contact with the nurse. Again I was told she’d get back to me “shortly.” Again I didn’t hear anything. For three days I kept my phone at my side wherever I went, kicking myself for not checking with Emory earlier, for not starting the whole process last year in fact, for really screwing up. And just when I had given up and stopped expecting the call, there was the nurse on the phone as if it was the most natural thing in the world. Ralph’s first appointment with his new doctor will be in May.
Suddenly my stupor lifted. Having a doctor in place has shifted my whole orientation. I am still resentful and exhilarated, but more exhilarated than resentful. Now that I’ve found Ralph the doctor he needs, I know everything else will fall into place
PS I should have gotten the ball rolling sooner. If anyone reading this is contemplating a move, start your doctor search as early as possible. Alzheimer’s specialists are at a premium. I feel a new empathy for expectant parents who put their unborn babies on waitlists for daycare and preschool.
Alice in Memoryland 
I was so glad to read your post and hear that the move is going well. I didn’t realise how much I had come to rely on your posts. I’m from Australia and I guess in a similar situation to you. Partner diagnosed with MCI with AD two years ago. I’m constantly trying to work out where we are on all the scales they publish about disease progression. Sometimes my partner seems just as he was and then he does something that I realise is ‘not normal’ for him and begin worrying all over again. The hardest part is finding others who are experiencing the same thing. Your blog has been a real life line for me. It is a strange journey we are on. But it is reassuring to realise I am not alone. So thank you and all the best with setting up your new life.
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Thanks for writing. What you write about “not normal” raises so many thoughts for me. I have lost perspective on what is normal now, what is normal for him, what is normal for me, how to gage normal in our daily lives. Sometimes it feels like driving a car without a dashboard.
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This is what I meant when I said, “in and out” — we never know from one day to the next what our world is going to be like, how our loved one will be mentally (or physically), so we have to be flexible and roll with the punches. I know that we don’t know what the future holds for us, but having to always be on alert for changes in our loved one puts a whole new look on life.
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Yes it does. And in some ways I am grateful for looking at life with that added perspective, although in many ways I wish I didn’t have to see what I see.
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boring😒
On Sat, Feb 1, 2020 at 8:31 PM Alice in Memoryland wrote:
> MCI Alice posted: ” I meant to write about our last Christmas on the > farm, about Ralph and his oldest son taking out guitars and playing > together as everyone sang along on Christmas eve, Ralph thoroughly engaged > for those few hours, how family and friends who’ve ce” >
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Sorry you found the post boring. In the last a negative comment like this would set me in a spiral of self doubt, but although I do worry that writing about life with Ralph can make me self-absorbed I also know I am trying to write an honest account, with its highs and lows and also its borings and routines….
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“The mix of resentment at having to do everything myself and exhilaration at doing everything the way I want…” You summed up so much so well with that one sentence. I can’t express my surprise and relief to read something I feel so definitively myself. Thank you so much for sharing.
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Thanks so much for writing. I am glad others have that same feeling. Being in this situation is not all “poor me” although sometimes it is easier not to admit .
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Wow!! That’s how I feel, too!! Thanks!
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So reassuring to know others share our feelings and reactions. Thanks for writing
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I was so pleased to see you had written a post. Part of me was sure your silence was because you were caught up in everything to do with the move although a part of me was becoming worried. I’m so glad you have the doctor sorted out. You should be feeling really proud of all you have achieved and I wish you lots of luck when the move happens. And, yes, you are allowed to have some enjoyment in your life – in fact it’s essential that you do. I’m glad Christmas went well. Wishing you all the very best for the rest of 2020.
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Thanks for the note and good wishes. I was afraid people might worry when I disappeared for a month, but I could not get myself to think about Ralph, needed that mental break from facing and analyzing I suppose. Suddenly have lots to think about and say again, however….lol
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Look forward to reading more posts 🙂
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I can commiserate with you so readily. I find myself holding back on my emotions, going through the motions of living and making decisions I never used to have to make. Then, my husband has a few days of normalcy and I’m pulled back in… in and out. I don’t know that I could ever move from this house; it’s been our dream home, designed and built to be our final home, but now I really don’t know if in the end it will be o.k. Time will tell. I wish you all the luck and patience in the world with your move. A dear friend is going through the same thing as you are (moving closer to their daughter) and she just mentions moving every now and then to get him accustomed to hearing the words. Such a mind-numbing situation.
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I totally understand your dilemma. In and out. About the house, you will know when the time to move is there. I never thought Ralph would be willing to move. He always has talked about dying in this house. Yet once I began to broach the subject as a necessary step for BOTH of us, he accepted the reality relatively smoothly–although he still says he can’t believe we are leaving.
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Hi Alice, It’s so good to hear from you again. I was afraid something bad had happened. But here you are doing what needs to be done. I know managing your life with Ralph is difficult but you’re doing it and you are still enjoying your life too. Before not too much longer, you will be settled in your new place and most of the worst will be behind you. Hang in there, you’re almost there and thank you for sharing your life with us.
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It is sometimes hard for caregivers like me to remember we’re allowed to enjoy our lives. That mix of guilt and resentment can get in the way. So I truly appreciate your positive take. Thanks so much for writing.
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