Kitchen Woes - He cooked the coffee pot

ButterflyWings

Yep. DH rediscovered the stove today, and melted the handle clean off of the coffee pot. I now have a hardened mini-puddle of whatever the handle was made of, melted onto the stovetop and burner pan. And another chunk of the same material by the sink.

It is a wonder he didn't burn himself, or do something to blow us up. 

What happened?! DH has attempted several things since returning from respite, that he has not tried for a while. And I was reminded of the recent post from several trying to work from home while also caregiving. I had to pause that a short while back because he is truly like Dennis the Menace -- line of sight literally, anytime he is awake. Which could be any time.

So, I had an online interview today and scheduled it around our 1 hour wkly HHA visit, plus I set him up with a full breakfast tray to keep him happy and occupied while I started my meeting. Welp. He finished eating early, aide was late, and I was mid- interview when I saw him stroll by me, into the kitchen. Uh oh.

I do not let him into the kitchen or bathroom unaccompanied. Haven't for a long time. But it was almost like he realized I was occupied and seized the moment.  All caregivers know the feeling of thinking frantically in the back of your mind while observing and/or participating in another conversation or activity simultaneously. Would be interesting to know if my interviewer noticed anything on my face as I thought through "what the heck do I do right now?" While hoping for the best. Maybe he would just raid the fridge. Make a mess, but I'd be off the interview soon and could clean up after him.

Well, about 2 seconds later sure enough I hear..."click, click, click". He's turned the burner on (probably the first time in 2 years). Dang it. So I'm waiting intently for other sounds and smells like hopefully not escaping gas. Thinking I either won't get the job I need for us to get through the rest of the year, or its possible we could be blown up any minute and won't even need it.

WTH?! This is no way to live and way too exciting for me. Truly. I heard a cabinet close, but was answering another question and couldn't call out to him which wouldn't have helped anyway. Even when compliant or cooperative, he doesn't really follow instructions well. I have to gesture, guide, and actually do things with him. So, I couldn't take the split brain thing any longer and asked for a quick break to grab something.

I didn't lie, after muting the cam and mic, I rushed into the kitchen to grab my DH and in all of 3-4 minutes he had tried to reheat my morning coffee leftovers by putting the little pot on a burner, apparently pretty high, based on how quickly it melted everything but the glass pot itself. DH left the evidence there in remnants of what looked like cooling lava. He had somehow poured the hot coffee into a tall beverage glass (not a mug) and was trying to wrap a napkin around it as it was too hot to hold. 

It is a wonder he didn't really burn himself, or cause a worse problem for both of us. This is a 24/7 FULL-TIME job. Even other family caregivers have no idea what it is like to supervise a PWD LO. You can't do anything else safely, if they are like mine. So, I'm grateful it wasn't worse, but hoping I can get him back to pre-respite routine of leaving some things alone completely. Meanwhile, I'll be sleeping with one eye open again. And shadowing him as always. He can't be trusted alone. And...does Starbucks deliver?

Joydean

Oh my goodness! Butterfly wings, I don’t know how you survive. I think I remember correctly, weren’t you trying to get help from the VA? Did they not approve your getting some help? If anyone needs help you sure could. I hope things do settle down for you both. Prayers you get the job you were interviewing for. Hope tomorrow is a better safer day.

Quilting brings calm

I’m so glad that nothing worse happened.   I just don’t know how you do it by yourself  When my mom had her UTI that brought things to light, it was as if she was like this.  My spouse, sister  and I were exhausted taking care of her..  it’s what convinced me I couldn’t take care of her.

M1

OOh BW, my heart goes out to you. I never did hear about the respite stay, hope it was helpful for you? And I hope the interview pays off, literally and figuratively!

Gig Harbor

That is scary how quickly things can go wrong and become something serious. What has worked for me is to tell my husband in a stern voice to stay away from whatever he is messing with. He went into my bathroom today and opened the window and possibly peed on the floor. I told him that he had to use his own bathroom and to stay out of mine. I locked both my bedroom door and that bathroom door. He can’t figure out how to open them with a paper clip so he just walks away. The kitchen is a whole different story. I hope you are able to clean your stove and that you get the job.

Mint

I’m so sorry Butterfly.  One more thing to deal with.

toolbeltexpert

Bw it sure has too much excitement Taking care of a pwd. Your story reminded me of when I did that. I was in my 20's and worked 2nd shift,I had put on the tea kettle and yes it was a gas burner. I went I to a far part of the house and fell asleep.3 hrs later my dw comes home,smoke alarms blaring and me sound asleep and 2hrs late for work. That could have ended very badly. I had recently taken a caregiver course on zoom. Dummy me, it was at 5pm right when dw starts to sundown. Needless to say I had to change to the morning class. You have to be eyes on 24/7. I am hoping you get your job and dh returns to his base. I was wondering did they stop any meds,or start new ones?

Ed1937

BW, I'm sorry it's so hard to get anything done. Best of luck with the results of the interview.

ButterflyWings

Hi fellow heavy-lifters. That's surely what caregiving looks and feels like, whether your LO is at home or in care at AL or MC with our support (moral, financial, emotional, physical visits, etc.)

OK. I have been slow to respond because of trying to keep up with DH and all the many calls I've had to make to do that. Feels like I should have a bluetooth chip implanted somewhere on my person, with some magical way to hit the "hold and accept" or, "can't talk now; may I call you back" text replies managed via telepathy. 

Here are the updates - I'm sorry this will be long. My brain is not all that organized right now.

Joydean

• Yes, we were approved for HHA help via the VA more than 2 months ago, but... no caregiver to be seen. 
• So, after the kitchen issue, I bit the bullet and again made several calls to the VA and to the agency (who said they never got the authorization paperwork from the VA). Maybe.
• More calls and emails from me, request to send ME the paperwork as well, and they had an intake visit within 24 hours, followed by a CG at my door the next morning. Fast. 
• Great, except she was unannounced (we had no idea anyone was assigned) lol; not sure she was vaxxed (a deal-breaker for us which I had communicated in advance); 
• Nice lady but she talked a blue streak for 5 days (to me). I need to get out for med appointments and stay inside, catching up on deferred housework and ideally can resume some remote work in my field. Hence, we need a good companion + progression ready aide trained to deal with dementias - and focused on DH. Ideally.
• Aide also had a heart condition=issue with stairs (can't put the laundry in, sorry) and needed to elevate her feet (a lot); ideally wanted a bed-bound overnight end of life hospice client like her previous (deceased) one. Not so much a 6d AD client that needs redirection and is restless, impulsive wanderer. For sure he could outrun her.
• I don't blame any aide for wanting a good fit. Same here, but I'm working blind on that.
• On Day 5, I overheard heard her accept a new assignment that was like her previous schedule and the next day she was a No-Show. 
• Agency says they returned my call repeatedly and I did not answer. I asked what number? (It wasn't mine.) Yet their office to the clients' cell is the only way they will communicate. Their aides can only communicate through the office apparently. [Is that standard?]
• They are now texting me the first name of a new person supposedly to start next week. No other details about their suitability etc. I'm not feeling it. Cher, Sting, Beyonce, Liberace, Oprah, Sinatra, Tiger, Elon, Waylon... those people don't use last names. But we do know 'a lot' about them. At least basic info pertinent to their qualifications, history etc.
• I understand the need for anonymity and "one name only" for celebs. But I don't get that being the policy for a person who has access to my home, schedule, full name, address, lots of personal info for my family, and confidential medical details for my spouse...plus his life in their hands kinda...for 15 hours a week. With me having no direct contact from them if they will be late, or absent. Which happened, or I wouldn't be questioning their process.
• Summary: So it was more of a hindrance than a help this time. And we need to start over trying to acclimate DH and a new aide. Which I don't plan to do too many times. So... I've let the agency and VA know we can't do a revolving door and just hope someone sticks. Not with a late stage PWD that's prone to acting out if provoked or extra-stressed (aren't we all).

Sayra, Ed and All 

• Thanks so much for the prayers and commiseration. I know I'm preaching to the choir!  

Quilting 

• Yes, UTI is possible and I'm trying to get a lab + culture. He was in (the same) depends/brief for the 1st four (4!) days of respite until it overflowed. (Smoke coming out of my ears). Toileting prompting & help every 2 hrs as promised by MC did not happen. 
• For someone with a history of UTIs and a prior bad yeast infection, this is something I emphasized and they were all smiles and assurances at intake plus phone reports the first several days. 
• He was "doing great". Until I asked very specifically if they had helped him change his underpants and sponge-bathe as promised. "Oh, ummm, well...no. But we have now" (*After he had an accident at meal time end of Day 4. Wet himself "in public" and was reportedly sad about it...before they decided to be more involved.) PWDs are people who do have feelings and deserve to be treated with dignity. I know it is hard for a solo 24/7 CG, but at MC with the 3 shifts of multiple people that Medicare or families pay? Really?

M1

• I appreciate your encouragement and realize that you are managing the other side of my frustration, with the even harder task of troubleshooting and fixing from a distance. 
• My heart is heavy for you and your beloved though she does seem to be safe and treated with dignity and professionalism at this MC. I know how you miss her though. =( 
• Yes, I also have been slow to recap the respite stay...in part still researching and processing some things. (see above)
• Also, just running to keep up with DH who is not back to baseline since that MC stay. While spending any free moment trying to get VA and hospice, and household, and his health stuff in hand. You know.

ToolBeltE

• Speaking of the respite stay, Yes, your question is on point. They did mess up his meds  and have been pretty nonchalant aka dismissive about that. Pi$$es me off royally. So unnecessary. The aftermath for PWDs and families is not even on their radar.

Gig

• I too have had to use my stern teacher or mom words and tone for dangerous things. Not often, but for sure lately. I couldn't do that with a Zoom interviewer on hold that day, though. Why? DH's response is a crap shoot:
• It sometimes interrupts his tirade and F-bombs...and thankfully when it works, he may get pouty or quiet afterward - but he cuts it out. 
• Or, if he is in UTI-land (which I don't always get warning of), it can actually make him escalate or threaten to elope (and do it!). So, I am careful not escalate if possible after the scary times a while back, which I don't want to risk triggering.
• Anyway, it is clear he is about 3years old mentally, and at least he's consistent. 
• As you did, I have stepped up my safety-proofing game to the next level, and am pushing harder for the support we/he is entitled to (and need) at this point, to keep him safe...and me (partly) sane. 
•  
• Summary...So I have gotten little else done but phoning, emailing, documenting, advocating, while also doing the physical care and other needs for a DH on the edge right now. My headache is creeping back though not full-blown and I hope next week is better.

I am REALLY sorry about this stream of consciousness recap. And for being so slow to reply. Your support, good ideas, and caring friendship are such a blessing. So very thankful for you all and wishing you peace and recovery from this truly crazy rollercoaster we all are on. Also praying for comfort in the storm, for all PWDs. 

M1

BW I'm glad for the update, no worries about stream of consciousness.  How most of us operate.

I hope the in-home help comes together.  It's clearly not easy, none of it.  I had the same issues with not being able to find anyone vaccinated in our area, period.  Which I agree, is a deal-breaker.  I keep thinking that if I had just tried harder, maybe there would be an alternative and I could have kept her home.  But it's a fantasy.  Now I worry that she'll inevitably get covid in the MC, although they have been pretty lucky--reportedly no cases since November 2020.  Hard to believe, but that's what I was told.

It all just sucks right now, doesn't it?  Not just me I don't think.

Hang in, I do think of you all the time.

Joydean

 I sure hope and pray you can get a qualified caregiver come in! Sounds like all you got was a nightmare! I also hope you can get some much needed rest. Prayers for you and your DH! 

jmlarue

I've been paying close attention to your saga - particularly the current situation for the VA agreeing to provide an HHA. What exactly is the deal with VA? Do they actually contract with a particular home health agency in your area or are they simply the funding source and you have to find an agency that will accept VA payment?

I'm supposed to be meeting with the VA Caregiver Support social worker next week to begin the process of getting some in-home help. Initially, I was told that I could ask for an aide for DH as my respite caregiver OR for a chore-worker to assist me with housekeeping & meal prep to free me up to focus on caregiving. It doesn't sound to me like there are any personal care aides who are expected to do anything not directly associated with caregiving. Soooooo....if my DH is low maintenance (no toileting, bathing, feeding, transfers, etc.) the assigned home health aide is basically free to sit on their fat rear end playing games on their cell-phone and that's considered "aid & attendance." Sounds like the first aide assigned was exactly this. The very idea that she should expect to not climb stairs, not do laundry, and put her feet up frequently - all I can say is, "Not on my dime or the VA's dime." Did you have no choice? Was she the ONLY aide available to you?

I'm so sorry for you going through that experience. To just not show up - no notice - is a cardinal sin. It also tells me that the agency isn't worth spit. If this is the caliber of so-called "caregivers" I can look forward to, I'm afraid I'd have to take a hard pass.

What does anyone else here have to say? Is this typical behavior of agencies and home health aides out there?

sunshine5

Yes Starbucks, Panera deliver!