“I LOVE YOU”–Easier Said Than Done For Caregivers of the Cognitively Impaired

I happened to read a post at the Alzheimer’s Reading Room call Three Little Words. I am sure the article’s author Bob DeMarco is right. I realize that saying “I love you” is a wonderful thing to say. I am sure DeMarco is also right that changing patterns of behavior as a caregiver is a good idea.

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But frankly I am not feeling it at the moment. I can hear you responding, that’s the point. If you say it, you will change how you are feeling and behaving. I get it intellectually and I don’t not love Ralph. But saying those words, and I do, sounds hollow. The truth, which is not always pretty, is that being together with him day in and day out is an emotional drain. Solitary even when we are in the same room and de-energizing because I tend to let myself drift into a slough of inaction with Ralph that I find both debilitating and anxiety-producing. (And yes, I know I should do things to make him more active, and I try, I really do.)

So, politically incorrect as this may be, I admit that I often put my own needs before Ralph’s these days. As I have said here before, we never had exactly an easy, or even happy marriage. I blame myself as much as him because I passively allowed him to be what he called “the captain” of the family, what the rest of us sometimes called the bully. My reasons were the usual complex mix of love, laziness, fear, and indecision.

Now, of course, Ralph is someone else altogether. As am I.

He has become the passive, gentle man who sat in the car today without complaining while I did grocery shopping on our way home from his aborted shrink appointment—for which he blamed not his therapist or me but himself for screwing up the dates and which despite the two hours spent driving in the car was not a complete waste of time because it gave his day a focus. The new jovial Ralph didn’t care that my run into Publix for milk turned into a full-fledged six-bag expedition.

Ten years ago, even if all I needed was a quick pint of milk, I would have driven him home and then driven back to the store we were passing on the way rather than argue over the practicality of adding an extra hour of driving to my life. For better or worse that weak-kneed version of Alice has disappeared. I have become a woman who tries to be diligent in her care but is seldom anything approaching affectionate.

Which brings me to this further shocking-to-me admission: Lately I have found myself transferring my affections from Ralph to another love object.

lola                I snuggle with Lola. I baby-talk to her the way I always made fun of other dog owners for doing. I encourage her to lie on the bed with me while I drink my morning coffee (especially since Ralph prefers to sit outside with his first cigarette). For the last month we have been taking classes together to make her more obedient. She now comes as soon as I call and stays sitting in “place” until I tell her otherwise. Along with obedience, she has become much more attached to me. All I do is look her way and she is by my side licking my ankle.

Ralph’s attachment comes with complications. Lola’s is much simpler (except that she eats my shoes). For me having Lola to love on has been a real help. And Ralph is not the least bit jealous.

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19 thoughts on ““I LOVE YOU”–Easier Said Than Done For Caregivers of the Cognitively Impaired

  1. I think it’s courageous and very important to share some of the darker sides of this experience caregiving a spouse. Seems when shared, whatever the feeling, others have had the same. Saying those three words can become rote under any circumstance at times but doing so may matter more to the recipient than the speaker realizes.

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  2. Again, I’m so with you..both about the “3 words” and about showering love on my terrier Milo. I think it’s hard to say I love you for many reasons. As Carole said above, this is no longer the person you married. In my case, I think my husband was changing because of Alzheimer’s for a number of years before I had any idea what was happening — the changes manifested themselves in deteriorating communication. So by the time we had the diagnosis of MCI, we weren’t quite the couple we used to be. One of the things I’m struggling with is how hard it is to help him. It would be so much easier if he could acknowledge the problem and ask for help or at least be more receptive. But he can’t help it and neither can I…Coupled with the loneliness and taking on everything our husbands used to do, it’s easy to see how the frustration builds and the “darker feelings” emerge. But we have to think of our needs, absolutely. Because if we don’t, then this disease is destroying more than one person. Thanks for sharing, everyone.

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    1. It is funny how many of us have turned to our dogs. Thanks for sharing your reaction and your situation. I totally relate. We are each walking alone down our own paths in this weird place, and it really helps when occasionally we intersect and walk along together for a bit.

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  3. I’ve been wondering how to respond to your post off and on all day since I read it this morning. I am glad others have already commented because I couldn’t in all honesty say very much as my situation was with my dad and not my husband. I shall keep your post filed away for future reference in case I need it (of course it could my husband who will need to read it in the future).
    I can say, though, I think is good to voice what you refer to as the ‘darker feelings’ because it is helpful both as a personal safety valve and for others in a similar situation to know it is quite normal to have those feelings. And I had more than my share of darker feelings about the situation with dad.

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    1. Thanks, Mary. I do worry over expressing the “darker feelings,” out of the natural fear of looking bad I suppose, but I am always gratified when I do by the response from others. It feels is as if we all breathe a sigh of recognition together. I think forcing myself to be honest improves my writing, my caregiving, and my life in general. But it is sometimes tough

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  4. Caregivee here. You all describe one of the things I feel the worst about – the collateral damage to my marriage and my wife from my disease. My wife called me on the phone two mornings ago when I was at work, as she often does, and we talked for a bit. She called again in the afternoon and started to cry as she told me how she was starting to feel “despondent” over what she saw slowly happening with me (as well as because of a recurring issue with one of our adult kids). That night she had a troubled look on her face as she told me that I had sounded funny on the phone that morning. She had noticed that I seemed to be having a tough time finding my words. She said it was the first time she had talked to me and thought that I wasn’t quite “me.” A timely observation from her in the context of Alice’s post and your comments. I suppose that as it progresses MCI slowly pushes people further apart as communication becomes more difficult and their relationships becomes one sided. Yet caregivers persevere nonetheless. You are amazing, wonderful people.

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    1. I will be honest and admit that I worried how you specifically might react to this post. The last thing I wanted was to make you feel bad in any way. First of all, because having a disease is no one’s fault. And second, because as much as I rail against the problems MCI causes, I am also aware that something solid remains and perhaps solidifies between Ralph and me in facing our life together at this point. As I wrote in a reply to Carole, once I expressed my angst, I felt a surge of affection toward Ralph.
      And the fact that you and your wife are sharing so freely is something wonderful to cherish. So few couples, without the excuse of MCI, are able to communicate as honestly and sensitively as the two of you. I applaud your wife and I applaud you.

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      1. No, please don’t ever worry about my reaction to your posts; same with anyone who comments. Yours is a caregiver blog (is that the right term?) and so it wouldn’t be right for you to pull any punches on my account. Ever. Besides, I’m thick skinned anyway.

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  5. I can relate to this. The person we married and fell in love with is no longer there. I have often thought about this, sometimes feeling guilty for these mixed emotions. The bitterness at how our lives have changed is something that is always in the back of my mind. But then, I start to think about the fact that HE, not me, is the one with this dreadful mind-robbing disease. This life as a partner of someone with dementia is not an easy one, and the trajectory is all to clear.

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    1. Thanks Carole, you are so right. I am always nervous voicing some of the darker feelings I have, but I find acknowledging them helps lessen their impact. So after writing yesterday’s post, and receiving comments like yours, I feel a renewed ability to deal with and affection for Ralph as he lives his life as best he can…

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  6. Once again I could have written this blog, word-for-word. It is exactly how I felt/what I did when Bo was declining. My Emma dog became my focus — my therapy dog — taking my mind off of other more troublesome things in my life. (And she still is!) I will say that “I love you” became my primary communication with Bo, and as I felt his loss more and more, I said it more often. In fact, the week before he died, as I said goodnight and “I love you,” he struggled to say the same thing to me. I understood even though his words were garbled. (This has become one of my dearest memories.) And your description of trying to entertain Ralph, to fill the day, this was my greatest struggle. Afternoon arrived and there was nothing left to do so I drove him around in the car for hours each day, once driving 70 miles to nowhere at all, just around the countryside. Nancy

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  7. MCI/dementia is an equal opportunity disease – it doesn’t care how old you are, how much money you have, whether you have a happy relationship or a strained one, where you live, what your politics, gender identity or religion are, whether you are vegetarian or omnivore, or anything else. Someone falls victim to it, and everyone in their life is affected too.
    Thanks for writing, Alice. It’s just a real struggle sometimes, and it helps to hear that it isn’t just me.

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    1. It is hard to know sometimes what is just me and what is normal. I am trying to be as honest as I can (although I know I probably pull my punches at times) about my own experience with Ralph, hoping others are reassured that they are not alone, but sometimes I fear I am the only one feeling or doing things a certain way so hearing comments like your really helps me. Thanks

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  8. I totally relate. My husband and I used to say “I love you” to each other all the time. We used to hug and kiss several times a day. Now that is mostly gone. I noticed a few years ago that I was the one always saying “I love you” first, so I stopped to see what would happen. What happened is that we don’t say it anymore. Occasionally we will hug or kiss, but not often. I have also moved into a separate bedroom. It is so sad what this disease does to marriages.

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    1. I so appreciate your writing me. I wrote what I did because it was my truth, but I wrote assuming it might anger/upset people so hearing that you could relate makes me feel less alone in this. I know we should judge ourselves any more than we should judge others, but easier said than done…..thanks and hang in there

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