My husband has Alzheimer’s
Before he was diagnosed we teased each other about our failing memories. Yes, he might be forgetting more facts but I was bad at names (speaking of which I have changed ours to Alice and Ralph at the request of my husband, a private man with a sense of humor, a fondness for “the Honeymooners,” and a not infrequent desire to send me to the moon). But gradually the jokes dried up.
Before he was diagnosed, I was scared and embarrassed for him, but more often than anything angry at him.
Then he was diagnosed with MCI, and there was a name for the still subtle but profound changes in Ralph’s mental process affecting his behavior and our relationship: MCI verging on Early Alzheimers—a condition waiting to slip into a disease that will affect more and more couples in the next decades.
When Rallph and I began our journey down the memory rabbit hole, I began this blog to share our experience with others facing the ever-changing challenge of a marriage invaded by dementia. As the years have gone by, Ralph’s MCI has turned into Alzheimer’s, and our lives have changed in more ways than I could have imagined, both as a couple and for each of us as individuals.
Every case of memory loss or dementia (or any irreversible illness) is different. I cannot speak for anyone else going through the stages of memory loss with a spouse. But I hope by sharing our process as honestly as possible, I create a dialogue with others in a similar situation and shine a clearer light on a life change many fear.
Alice in Memoryland 
I found this site today and for the first time I think maybe I don’t have to feel completely alone. This MCI, and its decline, affects my mental health and I hope to get my arms around how to stay above and healthy in alll respects. Thanks for your posts, very helpful.
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Please don’t feel alone. Please find a support group and let friends and loved ones know what you are experiencing. Not everyone will be equally supportive but there are people out there to help you. I am glad my posts have helped in any way.
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“hanging on to connections” is where I toggle. I find myself sweet and patient and adoring the man I have long loved and other times simply not being with him as I cannot stand another minute of the irritability that comes, the severe anxiety, and the feeling of a teacher and parent. The fear of what will be punches me in the stomach when I think and wonder or watch when he is having a rough time. Due to a long term job loss our financial safety net is gone and wondering how I will manage in the future and what will happen to me when I am alone. Of course, I am only sharing the harder part. There are still good and normal days and parts of days. I certainly hope your hubby still has a sense of humor and lots of laughter.
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Fear is what we live with as spouse caregivers every day. What is coming next? Fear of the unknown is really really difficult to manage. Your financial issues must be particularly devastating to think about. A sense of humor does help, his and mine. And yes we have one, but it can be hard to find on occasion…..
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Your posts help me put things back into perspective and I thank you for that.
Your comment about being angry with him is my problem too. It is hard not to be mad at someone who unfairly villainizes me. But, the more I learn, the more I understand.
I still want to throw a tantrum for myself though.🤦🏼♀️
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Just read that when dealing with toddlers it is good to go in another room and punch a pillow. I need to remember that. Thanks for writing and glad I have helped in any way.
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I am not sure if you see these replies any longer as this was posted a while back. My husband who just turned 64 was diagnosed with MCI two years ago. I am 53. He also has had depression and anxiety, which can be quite severe at times, along with multiple apneas. I finally grasped how much despair I felt a few months ago even though our son had been telling me all along. while many articles on loving those with dementia, MCI, Alzheimer speaks to the drain on caregivers, they often fall short on how important it is for us each to figure out how to keep ourselves intact and not be drug into the rabbit hole. It has also taught me that a “happy” marriage may look different as we work along this path and for each person will be different. Others will often not understand what I have to do in order to remain a loving wife, to not want to run away on days and be able to give as much as I can. It is a lesson in letting go of judgement of myself and others. Thank you for writing this blog.
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Jill, thanks for writing. I totally understand where you are coming from. I have certainly struggled with that issue of not fitting the norms I read about elsewhere….It sounds as if you are lucky to have a son who is watching out for you, as do I. Having him worry about me as much as his father sustains me through a lot. Just keep in mind that you are doing the best you can at any given moment.
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For some reason I was not notified on your reply. Thank you. We are both lucky to have such a son but at just 18, this is a burden for an only child just beginning his life and feeling the shadow of possible life long caregiving. As much as is written about what it is like to be the spouse of those suffering, there is so much unwritten as we all struggle with our daily short comings and missteps and dodge our own judgement. MCI feels a bit like the house arrest before a possible conviction. Which way will it go? Will he get better, worse or stay the same. While I hope for better and should hope for at least the same, I reluctantly must say that almost feels like the worst outcome. In many ways still being himself; yet, watching him fade like a photo, being uncertain of himself and feeling like he is an inconvenience to me and in reality he is still the same man and not.
Does this struggle sound familiar?
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Oh Jill, I understand. And having a son that young definitely must complicated the situation more than I can imagine. House arrest before a possible conviction is a wonderful metaphor although unfortunately, the conviction is probable more than possible. The reality that is hard to digest is that getting better doesn’t happen. But staying pretty much the same is a real possibility and a best case scenario I am hoping will be your scenario. Sending good thoughts
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Reading my written words feels like a betrayal of hope. How many others beat themselves up every night?
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I’m afraid most of us do in one way or another. I totally empathize and relate to that sense of betrayal you describe. I don’t feel it about hope exactly but about so many other issues. Yet you need to see you are doing all you can. And as my son reminded me as I was beating up on myself the other night, you can only do what you can do and no more is expected than that…..
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My husband is also seen at Emory Memory. I think of joining groups for support at times, but it is often hard to share some of the more vulnerable parts of my pain and experience. This is ironic to me, as I am a therapist. While I am sure full dementia is harder, I find the MCI experience of living with “two” spouses and being both semi parent and spouse so unbearably sad: enjoying time as it is and yearning for a partner. How he would wilt to read my words and this breaks my heart. I appreciate your blog, thank you so much.
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Yes, being “semi parent and spouse” is extremely difficult. Hang on to each moment of connection–
I find not just jokes but even arguments now and then are good to share as moments of intimacy
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Alice, I can’t tell you how helpful reading your posts has been. While I am sorry that you too are in the “club” to which my spouse Eric & I belong you writings about your journey with Ralph has been just what I needed tonight.
My husband too has has MCI, diagnosed earlier this summer, stopped working as of Sept 1st. He’s just 62 this month though have to say I’ve been concerned something was wrong for about 4 years….subtle things, not cognitive initially…more irritable, a bit less interested in others, somewhat apathetic about pursuing hobbies etc….hard to tell if he was getting older or….anyway memory loss became apparent late May and we spent the summer getting him tested…..while he tells others “it’s just short term memory loss” I remember us both hearing that there were ” a number of domains” on the Neuropsych testing which were problematic–and scores did NOT correspond to what they believe was his “pre MCI abilities”.
He stopped work as a Pediatrician Sept 1st….doing ok at home though have to say I really feel pulled to quit work myself now so that I can be with him, he won’t be alone, and we can perhaps have some “retirement adventures” together before he can’t travel…..I’m 59 & he worries about our finances yet clearly doesn’t understand the reality of our situation (ie from what I can tell we will be fine if I stop)…he’s perseverating about getting our second child, Evan through his last 1 1/2 years of college despite knowing that the money is there for him…it’s an odd time, we’ve always kept our money together & he’s paid the bills and taxes
etc …..yet one of the ways I knew something was wrong was the fact that he never seemed to get around to doing our taxes last year…
Sorry to ramble Alice…I guess I just want him to also have whatever quality of life he can in this earlier than expected retirement. I am coming to see too that it doesn’t take much to make him happy (never did to be truthful), yet he’s delighted when I make something happen-
Anyway, thanks so for listening. I want to wish both you & Ralph peace tomorrow on the day of the Elections!
Alice too (named after my favorite grandmother)
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Oh Alice, I empathize so strongly with your situation. That sense of something being wrong before diagnosis and his reaction to the diagnosis. If he is still able to travel and enjoy activities without too much anxiety, I hope you do take time for some adventures together. But quitting your job is a big decision. Not only due to the income but because (assuming you like your job) you get satisfaction and a sense of identity from your work. I was going to say that eventually you will probably have to quit anyway. but the question is whether to be at home now when you can have quality time as a couple.Life has a different rhythm with MCI, that’s for sure. Thanks so much for writing and sharing.
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