Tuesday, February 12, 2019

A Hard Conversation

If you've been here any length of time, you know about my Grandma's diagnosis and eventual passing from dementia.  It was a gut-wrenching time for the entire family.  There were decisions made that I felt she would have disagreed with, but I know that everyone in every decision made did what they thought was right at the time.  It led to the Mr and I having some very scary and hard conversations based on what kind of care we would both want should that be one of our fates.  (We're screwed if it's both of us!)   We basically said everything that was done for Grandma, we would want the exact opposite to some degree.  People often take care of the grueling daily duties out of a deep love for the person because your vows say that's what you sign on for and you do.  However, driving yourself into the ground mentally and physically will breed resentment toward the very person you're trying to take care of because you are basically dealing with infant care.  Just as a baby cannot verbally express their gratitude that you keep them fed, change their diaper, comfort them when they're scared, a patient in the middle to end stages of dementia/Alzheimers are in the same boat.  That person you knew and loved is not readily available to you anymore, and often you are in a stage of life where you are not as physically strong or mentally patient as you used to be.  There are horror stories out there about care facilities but there are horror stories about anything, and it gets more clicks to report the bad over the good.  If you dump a loved one off and never visit and the staff knows it, then in some lesser facilities, yes, there could be the potential for problems.  Do your research WAY ahead of time, preferably before there is ever even a problem so that you both can give your preferences if you should have to go that route.  If you think caregiver burnout isn't real and can't lead to people saying and doing things to their own family members, you are mistaken.  (That is NOT what happened in our case, but it's being reported more and more.)

That actually isn't what I wanted to talk about today, but it's another significant part of the equation.  As I said, being a caregiver is exhausting, especially for the spouse because they spend the most time with them.  As a spouse, it is frustrating, heartbreaking and lonely.  You are essentially left with no husband or wife.  No companionship to be able to exhale at the end of a hard day and vent to the only person who understands you because that person no longer knows who you are.  In the news the past two weeks, I have seen two different news stories relating to this topic.  The first being regarding B. Smith's husband having a live-in girlfriend as he cares for his incapacitated wife.  The girlfriend was also caring for her father with Alzheimer's and what started out as a friendship to talk about their journey with the disease, became more.  He claims it is something he and B. discussed ahead of time before she declined.  Then I was reading this hilarious obituary about another woman because she said: "I now have the smoking hot body I always wanted as I've been cremated."  What else is mentioned?    Her husband's "special friend" Dorothy who is now taking care of him.  After so many people commented on that line, her daughter confirmed that with her mother's blessing, the caregiver she had is now her dad's partner.  That is wonderful if they did indeed find true companionship but be aware there are some people who prey on that sort of thing.  I'm not saying that's what happened in that case, but something to be aware of should you ever face the same situation.

Obviously, this talk of finding love while your spouse is suffering from the disease stirred much emotion in me.  My heart is racing even now just thinking about the wrath I would've felt if her husband had done such a thing in front of her face without having discussed it beforehand.  She didn't want to admit she even had anything and was "fine" so I know that conversation never happened.  I would not begrudge him a "special friend," but what may sound totally acceptable for someone I'm reading about in an article, is way different if it's your loved one.  This man is not my Grandpa so not a father to my mom or her siblings, and I have no doubt they would've had feelings about him moving another woman into the house.  I can't imagine even if it was my Grandpa if he were still here that we would've felt much better about it.  The thought of moving someone in and having sex with her in the house, I feel that is the height of disrespect.  If you want to hire caregivers and spend your time at their place or date if they are in a care facility while still visiting and caring for them, that's one thing.  This is my opinion and understand if most of you, especially those who may not have been touched by dementia/Alzheimer's feel differently.  Matter of fact, I'm likely disabling comments for this not because I don't want to hear what you have to say but because I'm getting so upset just typing this that I want it out of me and to move on.

If it's so upsetting, why am I bringing it up?  Because of every conversation the Mr and I have had about this disease, we haven't had this one.  I don't know why but I never even thought people would have, what I consider the audacity to purposely move their girlfriend in while their spouse is still suffering in front of them. Obviously, this disease takes enough from caregivers; it shouldn't take any chance of happiness with it.  But that is still "your person," and they're still in there whether you have access to them or not.   We have no way of knowing if dementia is simply the inability to communicate what we feel, but inside we can still process what we see if it seems we don't.  I can't tell you how many nightmares I had that my Grandma was screaming inside for us to hear her and why didn't we understand her when she spoke or grunted?  There's nothing that can definitively say that isn't the case.   So I have to operate under if that is indeed a possibility, and it is, then how would I feel seeing the Mr kiss, hug and hold this woman in our home?  So yeah, big thoughts swirling around and they are thoughts you should have as well because dementia can happen to you or your spouse and you need to have all of the conversations.

It can be easy to say "yes, be happy with someone else" but that needs to be defined as to what you mean by that to still honor your marriage.  If the time comes and depending on the capacity to understand what you are seeing, could you change your mind when it's too late to have the ability to say so?  I have a lot to process because of these articles, and we have a hard conversation in our future.  Thanks for listening.  💓

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