A hotel of my very own

I realized last night that the only reason H is still with me is because I love him. But he is with me for many reasons, including that one as well. I mean he needs my income, my cooking, my occasional cleaning, my comfort, my driving, health benefits from my job, etc.

To a large degree, he lives at our house like a hotel. Sleeps whenever he wants, gets food from me, bills are paid, he doesn't have to do anything. Nor do I expect him too.

A few weeks ago was our anniversary; 24 years in fact. Both of us "forgot" it until later in the week and then I brought it up and apologized for forgetting.

Me: What do you want to do to celebrate?
H: Since we're not having sex hardly at all anymore, there's nothing to celebrate.
Me: Hmmmm. Now, ever since you got sick there have been issues with sex, but we've still managed to celebrate and honor the time we've had together and our love. Can't we just hug and acknowledge this marker?
H: No.

OK. So, we can't celebrate our anniversary now because he's not getting as much sex as he wants (but when we do do it, he doesn't work to speak of). Nothing else that we have had together matters. Even in our most sexual times, there's always been more for us together than just sex.

Boy, do I feel hurt, deflated (sic), and invalidated. Nothing else matters except for the sex? Sheesh. Not me holding his hand in ICU for 3 weeks, not me taking him to the hospital and ER over a dozen times in the past year and being with him & working the Drs., not me worrying about him, helping him in so many ways, feeding him, and trying to provide a home for him in his last days.

Without me, he would be in a nursing home.

This is what prompted me to think about me running a hotel.

Now, I do know that those with dementia have a hard time seeing anything from the perspective of "the other." But even knowing this, what he said floored me.

Everything has now been reduced to whether his willy is satisfied and if it isn't, then we aren't married and have nothing to celebrate. Well, my johnson isn't satisfied either, but I can still love him and honor our time together.

While it has been relatively peaceful on my front for a bit now (I've resigned myself to more of the same), this conversation has emotionally pushed me in ways I didn't expect. And it made me realize just how little I get and get credit for.

588 and obligation

Latest bloodwork for H was good, VL of ~35K and the highest T cell count (588) since he got sick 10 years ago.

Without a long diatribe (must keep entries shorter....), I'm glad for the good bloodwork, but it doesn't really change what is happening at home and how "faded" he is. Faded in the cognitive & participating in life sense, not in the jeans sense.

I do not want the following to be said of me: “You are the type of man that would stay with someone for the rest of his life out of obligation.”

However, I have reason to be worried, I think.

Caring styles

For a long time now, I've struggled with learning how to live with someone who has dementia and the occasional delusion. And how to love him and care for him.

A big part of this is learning to react, or rather, catching myself before I react with my gut.

So, when H comes to me and says he doesn't know how to operate his cell phone, well, I react with shock, dismay, and worry...and more than a bit of frustration (He thinks I'm angry at him, but I'm not.)

Awhile ago, I learned in a caregiving class (thank goodness for those!) that if someone is delusional, you can argue with them all you want, but they BELIEVE what they are saying is true and nothing you say will change that.

I've also recently learned that the style of caregiving affects the agitation level of he ill person.

If I react with a caring nature or a parental nature, then the ill person is less likely to become agitated than if I react and get agitated, worried, or angry. Now, those feelings are very real when things happen like he can't use his cell phone, forgot how to play chess, or doesn't remember the back routes through our neighborhood of 20+ years.

I am worried and afraid and angry and and and...normal human reaction to seeing someone you love decline. This is the partner part.

But as his caregiver, when I show those feelings, he gets agitated, worried, and generally upset (he thinks I'm mad at him or worse, that I want to divorce him).

So, I try not to show those feelings to him. I do believe that relationships are partially based on emotional honesty, but yet that isn't "indicated" in this case.

It's easier to have a caring or parenting style when the person is not your partner, I think. Then you can focus on the needs of that person. But as his partner, I have my own stuff about how he's doing...but that isn't something I can share with him.

How much can you withold from your partner and still claim that they really are your partner?