Sleep Deprivation and Other Strangeness

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Sleep Deprivation and Other Strangeness

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Been a while, not sure where to start. This could get long.

The last few days have seen a sudden downshift, reasons unclear. Falls, getting up every hour on the hour at night, not eating, forgetting how to drink out of a glass, spilled Kool Aid all over herself, the chair and the floors (I washed the chair coverings 3 times by noon Sunday! and there are still sticky spots on the floor) and tonight not sure what a cookie was or why she had one. The not eating and insufficient drinking no doubt has something to do with the wobbles and subsequent falls.

Fortunately the hourly getting up was only on Saturday but it made Sunday a living hell — I don't function well on too little sleep to the extent that while in college during tech week in the theatre which coincided with midterms, a friend started to sit at the same table with the boyfriend and me but asked if I had gotten any sleep. Was told no by the boyfriend and said friend left as did the other two who had been sitting with us. Some people get "hangry" I get the equivalent of lack of sleep plus anger. By noon on Saturday I wanted her the hell out of my house NOW.

ANYway....

Paperwork for the application for Medicaid has been sent in, acknowledgement received and today I got a call to confirm that we are applying for the Passport waiver for services in the home. I was informed that there will be a 5 year look back and the woman I spoke with is putting the list of what they need in tomorrow's mail.

I am meeting with our attorney to see what can be done to protect her insurance policy money for the final arrangements it was designed to cover. Oh and figuring out how to get TIAA to release the $1300 that they have - you see (for those just tuning in) the POA paperwork I sent them wasn't good enough because the seal wasn't raised. In Ohio notaries don't use those kind of stamps anymore, they use ink stamps. So now I have to get the attorney to provide a certified copy that has to be overnighted before I can call TIAA back to request the paperwork to release the funds.

We're down to less than $1k in savings and after Home Instead takes their $1900-ish money out tomorrow the checking account will be about the same. Not sure how we're going to pay for the next half of the month. The IRA money will have to be cashed out and put in the checking out, assuming I can get that done before the next automatic payment happens. Oh and still need to pay the latest round of medical bills and pay off her credit card, so most of that $6k in the IRA is already spoken for and NOT by Home Instead.

Still think it is criminal what they charge for in-home care considering how much the agency pays the caregivers. $20.50 an hour and really they don't do much, she's pretty low maintenance.

Feel as though I am fighting so hard to try to keep her safe and comfortable and getting nowhere. The community sneak preview of the new care facility down the street is on Feb 22nd. I finally ran into someone who could answer the "will you have Medicaid beds" question and they said yes they will in the skilled nursing care portion. At this point assisted living isn't going to cut it - she can't do anything for herself - dressing, meals, hygiene, none of it. Yet she doesn't need a bucket full of meds, no wound care, nothing you normally think of when you think "skilled" nursing. Memory care sure but not hospital bed type stuff.

I presume we will find out at the sneak peak what the target date for opening is -- and if they will take a Medicaid reservation/let me put her on the list. Plus forty-thousand other questions that I have... although I am flying blind and not really sure what questions to ask.

Hey! Wake up, not done here...

Just put her to bed at 9:00-ish — after putting her off for about 45 minutes — but for some reason she didn't want to put her PJs on, the same PJs she wears every night. Then once she got into bed she seemed afraid of something. I sat with her and asked yes/no questions but nothing seems wrong. She seemed to be concerned about when I was going to go to bed. So I told her I would check on her again before I went to bed and that seemed to calm her down.

It's odd. Since Friday night she's been concerned about what is outside more so than usual. Okay granted there was an event at the synagog across the street this weekend (both Saturday and Sunday) and that did unsettle her. Beginning to wonder if she's starting to see things. The fact that she can't talk anymore is really frustrating when she gets like this. The yes/no questions only partly work since she has to nod or shake her head and sometimes I don't think she understands the question. You have to ask things several different ways before something will click.

That's the sort of thing I worry about when considering a care facility. The doctors here have never heard of her type of dementia. How are the cna/stna staff supposed to understand her? She can't push a call button to go have someone help her to the bathroom. I tested that by giving her a bell to ring. Doesn't get it.

In the midst of all this the little birdies out there who have no real idea what we all go through keep telling me to "find the happy moments". Seriously? "Happy moments"? Have you SEEN my life? Have you met my mother in her current situation? Did you know her before and have you seen her lately? Where the bloody hell are we supposed to find "happy moments"? The cats don't even make her smile these days. Ever want to slap the crap out of those little birdies who don't visit, don't help out and yet can NOT stop dispensing "advice" on matters about which they have zero comprehension.

So much to worry about. Being a caregiver sucks.... in every possible way.

Oh yeah, and I've gained another 5 pounds.

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Lark

Cat, I hear you loud and clear and I am so sorry all of this comes fast and furious. It seems feast or famine when caregiving. I wonder if your mom is dehydrated which would definitely create many of the symptoms you describe and/or a UTI. My husband hallucinates when he has UTI's and his behavior gets bizarre. Not trying to be an armchair doctor by any definition. Just sharing a couple of things that create havoc in Robert. I cannot imagine having so much to try to handle by yourself. Lack of sleep is the pits and constant caregiving on an hour by hour basis is horrific. \r\nThe new facility that opened close to my house operated exactly as Denise was describing. They said they preferred a new patient be able to pay out of pocket for at least six months and then, if necessary, they would transition to medicaid. Robert is in a rehab/nursing home that takes medicare and medicaid without those conditions but he was already qualified for medicaid so I did not have to address the many issues you have on your plate. \r\nI appreciate your honest and vivid account of what is happening in your world. I relate and I need to hear what others are going through and what they are doing to cope.\r\nMy thoughts and prayers are with you and I so understand about what people say about the \"happy\" moments and not being there to help with the work and the burden you bear.\r\nIt is of small comfort in many ways but I want you to know you are loved and that I am praying for you and if I were near you I would help and you would help me and we would have some crazy stories to tell.

Denise

Hi Cat,\r\n\r\nIt does suck. \r\n\r\nJust a heads-up that many facilities that have Medicaid beds use those exclusively for residents who have paid down assets rather than new admissions.\r\n\r\nI'm wondering about your mom's eating and drinking. What happens when you give her something to eat or drink?