Floating in the Ocean with a Life Jacket kind of Day...

drais25 · July 21

Hello friends, can I ask the question that some of us have?

Why is this so hard?!? All of it. The grief of watching your parent fade away. Six months ago, she couldn't recognize the banana from the apple. Three weeks ago, I started feeding her because she stopped initiating to start eating and she can't tell the difference of what she is eating. She has a restlessness to want to go to the bathroom even though she just went 2 minutes earlier.

She is so anxious and restless. It makes me anxious and restless. My brother, spouse, aunt, and cousin say "Ignore it".

Ignore it! Ignore her almost "abusing her cat" … she picks her up and puts her in the room. The cat yelps and I'm in the kitchen watching my mom grab the cat. Can't ignore that, a pet is about to be strangled from the way she's grabbing kitty.

Ignore it! Ignore her closing every door and getting up in the middle of eating to close doors.

Ignore it! Ignore her going to the bathroom by herself when you're in the kitchen cooking to accidentally grab a dirty wipe from the trash to wipe herself because she doesn't see toilet paper. Not too mention splash water all over the bathroom.

Ignore it! When she dips her hand in hot tea to wet her hair.

Ignore it! You buy her tea at the coffee shop, and she turns right around and chucks it in the trash.

Ignore it! ;) … I try, I say to myself - "As long as she is safe" … "As long as she doesn't kill the cat" … "Its okay, its only $4 for that tea" … Ignore it.

The hyper-vigilance wears you out. I'm worn out. I literally cannot sit down without another action that I have to stop or redirect. I've done it all. Redirect, hide cues, close doors myself, put the tea on another table, even put the portable table in front of her to prevent her from getting up to close doors and bother kitty.

I tell my people that "She wears me out" …. people who are not in this, have no clue what this does to a caregiver. I'm the primary caregiver. I have one other caregiver. I had two ( but one of them told me a couple days ago, that she is done, it wears her out) …ummmm no sh*t!

I'm not trying to complain or vent, I'm literally not functional. Mentally worn, agitated, resentful, hurt, grieving, sad, angered… you name it. My bandwidth for anything is so thin. Going on my phone and doomscrolling to check out is my go-to. I went from someone with a career in Medicine, having a practice with many patients…to now one patient who makes me impatient!

WHITE FLAG is up…

I love my mom, she's so sweet (now) but why does it have to be this way. WORST CONDITION EVER! I HATE THIS DISEASE! I said it. Hate this disease.

notequipped · July 21

I’m at that point, too. You’ve hit the nail on the head - the hyper vigilance is exhausting! One ear is always listening to what she’s doing. I’m mentally, physically and emotionally exhausted. My husband’s patience has worn thin as well.

Maybe it’s time to consider other options? Thank goodness for those professionals that have the patience to deal with this daily. I’m not one of them.

pamu · July 21

If you're like me, you can't ignore it. You can't put that extra pressure on yourself. That's just something else you "should" be doing and contributing to the stress. Unless they are helping with caregiving, the "just ignore it" crowd can zip it. I know from experience that finding trustworthy and dependable home care aides can be very difficult. Have you considered respite at a MC or nursing home for a couple of weeks so you can catch your breath?

SusanB-dil · July 21

Agreeing with pamu - MUST take a break.

Have you looked into adult daycare a day or a few a week? We called it the community center. We found a local one and it really wasn't that much per day. MIL is even past that, now, but do check it out. ASAP

Also agreeing - that those who aren't 'living it' do not understand.

drais25 · July 21

https://alzconnected.org/discussion/comment/277889#Comment_277889

Thank you so much, I think that’s part of the hypervigilance, you’re always thinking of options. I am getting respite care now, one of the caregivers. I had to sign her up with respite care so that we can give her more hours. I didn’t know that we could call memory care to get respite, I’ll start to explore that. That was a really good recommendation. My brother said that he would come this week, to give me a break. He lives out of the state. There is an adult daycare, that my mom was eligible for six months ago, but I think now it has changed, the person told me we have to reapply based on her condition. She may not be accepted. So hence, we haven’t pursued it, knowing that the social worker said that she’s not eligible.

pamu · July 21

If you haven't already, I would call your/her state's department of aging. They may have more resources and information regarding respite.

psg712 · July 22

So good that your brother can come even for a few days. He says he's giving you a break, so ... TAKE it. Meaning, show him her routine and then go. Out of sight where your mom can't call on you, available by phone to brother for questions but not to bail him out. This isn't cruelty. It's allowing him to give you the respite you need and also allowing him to see mom's needs and behaviors without you as a buffer. I hope it goes well.

I don't know how you feel about facility care. If you are open to it, it can allow you to visit as the caring family member rather than the stressed out caregiver who has 24/7 responsibility for every need. You will still be her go-to person, but you will have more balance in your life. And you will have a team to work with in her care.

sandwichone123 · July 22

I'm on the team saying ignore the ones telling you to ignore. They clearly do not have a clue.

I learned pretty quickly who gets it and will be helpful to talk to, and who doesn't. That group gets the "fine, fine" treatment. "How's Joe doing?" "He's fine—about the same." "Oh good." End of topic.

Floating in the Ocean with a Life Jacket kind of Day...

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