TRUST and CAREGIVING

Ralph and I are back into a routine after our rocky summer and landed on another plateau of what is normal. The changes I noted over the last months have set don’t bother me so much. And there has been a positive development. Ralph now plays music not only in his therapy sessions but also once a week with a neighbor our age who has been teaching himself the harmonica. The neighbor and his wife are newcomers to Nola and have become what I never expected Ralph and I to have again—couple friends. While our two husbands play music together, we two wives share a glass of wine around the corner. Having  witnessed Ralph get agitated at an unfortunate outing to a restaurant, the couple seem undaunted, particularly since we usually meet in our sun room where Ralph is much more at ease and therefor his most cognitively alert, charming self.  

So Ralph is happier these days, as am I. So I take more time to ponder the larger issues.  And what I find myself thinking about lately is trust. Trust in a marriage is always an issue. Trust as a caregiver spouse brings up another complexity altogether. 

In our pre Alzheimer’s marriage, we had a lot of problems but trust was not high on the list. We never cheated on each sexually. Even when we hated each other, we used up too much emotional energy in our relationship to have any left over for others. Our general modus operandi was to argue, sometimes with alarming openness. Several friends whose marriages fell apart after seeming much calmer than ours have said maybe being so openly angry at time saves Ralph and me. Maybe?  Ralph was nothing if not straight forward and vocal, sometimes loudly vocal, in his views, but I could be secretive, nursing grievances and fears I couldn’t bring myself to share. As we bickered our way toward making decisions together, I didn’t always trust his judgement and he often ignored mine. What I did trust in those days was Ralph’s competence. If he said he could fix the plumbing or make the business deal, I believed him.

Well now the parameters have changed.

Ralph really has no secrets—he says whatever pops into his head, loving or nasty—but he also has no judgement. I have had to teach myself not to trust him to do anything. I can’t ask him to chores because 1., he won’t remember that I asked and 2., if he does remember he’s likely to mix things up. His once amazing mechanical aptitude in shot, he can’t read directions, and he has no capacity to problem solve.

On the other hand, he trusts me completely, a trust I am not sure I deserve. He assumes I will do what is best for him. I try but trust is a burden. I make sure his daily needs are met, but sometimes I hide in another room when I know he’d like my company. Sometimes I say I am going to run an errand when I am actually having lunch with a friend, or even our daughter. 

And I no longer discuss with him any issue of substance, for instance tax issues, business decisions, or whether we may need to move to a different living situation in the next few years.  He has no idea that I have been looking into options and I have no plan to tell him until such a move in imminent. I know that closing to keep difficult problems from him is largely for his benefit and that discussing decisions would have no actual benefit. He has no capacity to think through or even follow and would only be upset. But I also feel a bit uncomfortable with power I suddenly can wield over his life.

10 thoughts on “TRUST and CAREGIVING

  1. Hello Alice

    I read your recent post and it struck a chord with me. My wife was diagnosed with early onset Alzheimer’s in 2014, and I looked after her day and night until 2 years ago when she moved into full time care.

    Your post about Trust reminded me of the problems I felt several years ago when I realised that I would have to start lying to my wife, to keep her happy and content. I found this a very strange thing to have to do, and totally alien, as we had both tried our best to be open and honest throughout our marriage. I struggled with this a lot at first, as it felt so wrong, but eventually I realised that it what was needed to provide her with the best care I could.

    I’m an amateur musician, and I wrote a song about the situation (as I found this helped me cope) and if you would like to hear it, it is online here https://youtu.be/icad1cIxb9o

    wishing you all the very best

    David Shepherd

    Liked by 1 person

    1. I remember when we diverged. We had lunch one day and our husbands seemed to be in the same situation. week later they weren’t….Hope you are thriving. Those lunches were lifesavers

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  2. Oh yes… I recognize all of this. I live it, day by day. We still have our home listed for sale, but I’ve backed off on trying to find a new place. When it needs to happen, it will. Meanwhile, it’s all up to me. Sometimes, I look at chores or tasks and realize I’d be doing them by myself if Robert weren’t here with me anymore, so I just get to it and get it done. If I’m unable to do something physically, I find someone to hire who can. No asking Robert if we should do this, that or the other–it’s all up to me. Hang in there, as I will do, though the hanging does get tiresome.

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  3. Wow. “Being uncomfortable with the power I suddenly can wield over his life” – that’s it in a nutshell. The dynamics of the relationship change so profoundly as dementia creeps in. It’s incredibly unsettling to have the responsibility for both parties building up and building up, while the ability of the other party to comprehend that this is necessary and why it is necessary fading slowly away, day by day.
    Please take care, and know that you have company along this strange road.

    Liked by 1 person

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