Uncomfortable with my feelings toward my LO

you’re welcome. This disease sucks!! Anger at the terrible disease is understood. Someone posted about “anticipatory grief” that many of us caregivers go through. Maybe someone will remember who posted it and reply. It was very helpful for them.

4MY… 'Every single thing he says or does drives me crazy.' 'gets me so angry & sad…so I turn it inwards.' Wow. Do I ever relate to that. Two years ago, I got incessant weeping spells, but am much better now. I hope you can find ways to cope. Here's my story.

My DH has fluent ppa (aphasia), lots of words, but no intelligible communication and less and less rationality. Today, at 8:30am, he went out on the kitchen porch and hollered/sang a word salad for what seemed like an interminable time, probably just a quarter hour, as I tried to persuade him to come in the house. The neighbors all know that he has dementia, but it was still embarrassing. I know it's not my fault, but I try to keep him from bothering others. I took him out for his daily walk early, to get him off the porch. Yesterday we had a lovely picnic and walk overlooking the sound, and it was all so normal, until we came home and before I could get him to the bathroom, he peed off the front porch. The day before that, he poured a glass of water over my laptop keyboard. Amazingly, I reached it and dried it in time and it still works.

Now, in our fourth year, I have become pretty much able to avoid freaking out about his messy, objectionable, mildly dangerous, and totally bizarre behaviors. What really changed it all for me was when I realized that when I showed any irritation or even sadness, it amplified in his brain, and he became agitated, angry, even scary. My survival seems to depend on my being able to remember that he is not doing these things to annoy me, but because he is ill. So I project positive cheerfulness, almost constantly. I got a prescription for him to reduce agitation, but have not needed to use it. Instead, when he exhibits some new and bizarre behavior, I take a deep breath, calm myself down. I make up a song about it, dance a little, smile at him, and say to myself 'I'm glad I still have him.' It mostly works, since he has a short memory, and a selective one. He forgets everything, except the immediate emotional frame.

I had to relax about physical contact too. We hug and pat each other and hold hands, but never anything more. It's turned into sort of a kid/parent expression of affection.

I can't thank you all enough for normalising my DH's behaviour. Its so very hard listening to and watching the young man you married (45 years ago) turn into someone different. Aphasia complicates the relationship even more, our daughter, who is so very loving, has quietly commented why couldn't he have cancer, something that is normal. It sounds hard and sad but she is hurting too and she is so very caring. Retirement was never meant to be like this for me or my darling DM, friends are off on cruises, shopping, dinners even; DM's dinner often ends up on the floor which our new little puppy loves!

PS our puppy now 3 months old, a schnoodle, is a bundle of fun and a great distraction. He is a ray of sunshine every morning, so non judgemental and requires sooo much attention, but we now walk him along the beach walk and then it's my turn to chat to all the other puppy walkers. Socialising again I can't believe it. I'm still so exhausted by the constant demands and changes but it's so good to hear I am not alone. My heart goes out to everyone in this situation that non of us wanted.

@4MY❤️

I am so sorry you are dealing with all of this. First, kudos to you on shutting down internet access. I know first hand how hard that is to do.

Please stop judging yourself for what you feel. You feel what you feel. Full stop. There aren't good feelings or bad feelings or feelings that are "normal". Please don't assume others are coping better than you. They may have an easier PWD, more support, not care or just present a more serene facade despite their inner struggles.

You sound a bit detached from your DH. And, to my ear that makes perfect sense. When my dad was going through dementia, a dear friend's mom, Oma, was as well. Oma had been a wonderful mom, grandmother, family matriarch and friend. She was wise and sweet with a side of snarkiness reserved for those she deemed trustworthy. Even with dementia, she remained generally good natured and cooperative for which my friend was grateful especially when I shared tales of dad's shenanigans. What pained her, though, was that she felt detached from the woman living with her. She summed it up saying "The woman I care for is a nice enough little old lady, but she's not Oma".

Your husband, in his dementia, has become someone you probably would have avoided. This is tragic. I watched my own mom wrestle with similar feelings given my dad's behaviors. Dad wasn't on the internet, but he was just creepy talking about sexual topics including some self-reported exploits (pretty sure these were conflated) that would land him in jail. We mostly kept his world very small, limiting his outings to medical appointments for the duration.

Dad saw a geripsych and it was worth every penny. Despite that, the inappropriate sexual talk was not something meds were able to entirely extinguish. At the time this started, dad was undergoing ADT (prostate cancer) and had zero circulating testosterone and was taking a fairly high dose of Prozac. Adding Seroquel did tamp it down considerably in stages 5 and 6. By late stage 6, this behavior did seem to fade.

I'm glad you're investing in therapy for yourself. Please make sure it's a good fit. My mom's psychiatrist referred her to a therapist for talk therapy and it turned out to be more of a vent session than support and strategies to cope and protect her well-being. TBH, she got more bang from the psych and her in-person ALZ support group. My niece worked on unresolved issues with a therapist for 10 years without getting anywhere until she moved and tied up with a psychologist doing DBT. After a dozen sessions with him, she was in a better place. Medication helped them both as well.

HB

I am so sorry and I empathize so dang much. I'm so sad so much, but have had moments of respite that I think have saved me from going even deeper into despair. I'm with M1. Some time away from your DH could be helpful to you. I know it was for me when I was able to send my DW away for an entire 4 days with her sister to go visit the rest of her family. I hadn't realized how much I was going to enjoy having the house to myself for 4 days. After those 4 days, I realized that I'd nearly forgotten that we used to do things independently that gave us both a little time alone at home occasionally. Her out to dinner with a friend, even, gave me a couple of hours alone in my own home. Damn, I still miss that.

I came away from those 4 days a changed person. Like, remarkably changed. I stopped having so much of the internalized anger about my DW's behaviors. They come back some when it's been a long stretch of no break, but then I know to work hard at guilting her sister to come visit for a few days. I've gotten really good at that too. Lol.

And, if I had a neurologist trying to make my DW do a sleep study in Stage 5, that doctor would get an earful from me about how stupid that suggestion is for a person with dementia. Who gives a damn if my DW has sleep apnea at this point?

Anyway. Please hang in there. Please give yourself a break from the hard messages you're sending yourself. And please think about a way to give yourself some respite!

xoxo

There are so many wonderful people on this forum who can so eloquently describe how we’re all feeling - the sadness, frustration, anger, guilt, etc. It’s so validating. My DH and I always used to say that part of the reason we had a successful marriage was that we were not only in love, but we liked each other, we were best fiends. Now that this disease is in the picture, the love is still there but it’s sometimes very hard to still have the “like” part. These are normal feelings but hard to feel that and not feel guilty.

This was a pretty good short video from Careblazers about unspoken thoughts (that we CAN speak of in this forum!)

https://youtu.be/_SN6vNGZdpU?si=fs_Yj6uoawNqhXbI

thank you