Every time I call my mom these days, she says “Hi, let me put your dad on.” She’s gone in a whisk and a clunk, and I’m on the phone with him.
I don’t know if she’s pissed and doesn’t want to talk to me,
or if she’s making me Dad’s babysitter while she uses the potty by herself for the first time all day,
or if this is some Cat’s In The Cradle bullshit scene because Dad’s falling apart so fast.
I’d ask her, but I can’t get two words in before whisk/clunk.
When I first started talking about my dad’s dementia, some kindhearted commenter said, it becomes the new normal. Yes. This. My dad doesn’t make sense anymore. I can hardly remember what he sounded like when he did. He says:
“Well, we went to the … place, you know?” (Uh huh, I say) “And we had to get.. the-the thing. But there was a dumb kid who didn’t understand I wanted to … I can’t remember the word, help me out here. So now we gotta go back to the other place, and it’s a hassle, you know?”
It’s like hearing a ghost, patchwork pieces of a hundred old conversations with all the specifics snipped out. It’s comforting and distressing, swirled together until those emotions lose their edges and blend into some feeling that is both, as impossible as that seems. Then frequently terrifying when I hang up the phone and process that I’ve had a twenty minute phone call with my dad, and technically, it was gibberish.
A few weeks ago, I went through this … thing, I dunno (whee, now it is I who am speaking gibberish) but this thing where I told my husband — if I inherit whatever my dad’s got, I want him to take no measures to prolong my life.
“O…..k,” my husband agrees, so reluctantly I suspect he’s lying to me.
“Not just the DNR-type stuff,” I insist. “I mean, blood pressure medication, diabetic stuff, anything. When I get where my dad is now, stop giving me any meds. Because by the time I get there, I’ll be too demented to remember it’s time.”
After I made him promise, I went to my husband’s mother, and then a close friend. I told them all what I’d told my husband to do to me, and that it was my strong wish for him to act accordingly. “So if I ever end up kicking it under somewhat suspicious circumstances, I’m telling you now – that’s how I wanted it, so support him, even if it looks like I got smothered by a pillow or something, OK?”
About two days later, I realized I’d just told my nearest and dearest not to raise a fuss if my husband kills me. Guess if he gets bored and wants and start over with some Mrs. Nahm 2.0, I’ve just signed, notarized, and approved my own death warrant. Even so, I can’t make myself take the words back. I do not want to be around when I get where my dad is now.
Then I realized I’m skating at the edge of wishing my father dead.
I’ve been there for a family member. It sucks.
I have no wisdom, only this: thinking about wishing this does not make you a bad person. There are no wrong emotions.
I have some stuff that helped me, but it is fairly me-specific and I hesitate to offer it as general advice; email me if you want to know. Generally, though… it is terrible. Eventually it will stabilize; eventually it will end. Courage.
Powerful post. I’m thinking of you as you sit with what seems like an enormously complex and heartbreaking crush of emotions.
My grandfather is 91 and was in great health until last year. He has now fallen several times, broke his hip last year, needs a pacemaker, and we think is developing dementia. He is incontinent. He was never a pleasant person, but he now getting downright mean.
It’s not that I wish him dead, but you do start to wonder what the point of continued existence is – it’s not living to me. I do know that I don’t want to be that old or live in that condition. Once I can’t really LIVE I see no point in hanging around. I think somewhere between 75 and 85 is long enough for me.
I have been trying to comprehend why my husband will not visit his mother, and this post is helping me do that. My mother in law is out of touch with reality. I don’t think hers is Alzheimers, it’s some other sort of dementia, but it is just as horrible.
I didn’t know my m-i-l for many years before she started this decline, but what I knew of her was that she was a fairly suspicious person with some touches of paranoia. Now that she is in the throes of this condition, it’s Ever-So-Much-More-So. There are constantly people trying to kill her, or doing medical experiments on her in her sleep. She has developed this distrust of Jews, which as far as anyone can tell, was never part of her before.
My husband is terrified that he will develop dementia, and every time he forgets something simple, it’s Evidence.
I’m sorry for what you’re going through. It’s a horrible situation. If you are skating on the edge of wishing your father dead, it’s only because it would be an end to his suffering.
I was thinking about you and your dad and your mom this morning as I considered what my therapist told me yesterday. She was urging me to have a sit down with my siblings … to schedule regular sit downs with them, like monthly … to make them as accountable for my parents as I am right now. And I thought, it is a good idea. But it does nothing to help with watching their descent, physically or emotionally… I am so sorry you and your family are living this hell.
parodie is right. Not only is there nothing wrong with you wishing it, your dad would wish it as well.
Has your mom considered calling hospice for help? They are great and most dementia patients are eligible.
Sending lots of supportive vibes your way.
You are thinking the right things. Do consider hospice — insurance pays for it — it is mainly people coming out to visit and help and call on for support. It is not a “death sentence” but intended to make the patient and family more comfortable. As for your future possible condition — it doesn’t much matter what you “told” people you want. You need to fill out an Advance Directive about what you don’t want done and designate your husband and secondary people as power of attorney or health care proxies to make the decisions. You can get the forms online — I’m not sure about your state, but often it needs to be witnessed (with the signatures) and notarized. You can revoke it at any time. Emergency Services coming to your home often won’t honor it, so you might also need to get a bracelet, when and if the time comes — but let’s hope you live to a butt-kicking old age!
http://ag.ca.gov/consumers/pdf/AHCDS1.pdf
I wish I had any words to soothe. Sending light and love to you.
The longer life goes on the more I realize that I know nothing, that my experiences and opinions are usually not very useful, and that the only real thing of value that I can offer is love, prayers and a helping hand.
I’m not there to help you in real life… but you have my love and my prayers.