MC Facilities questions

charley0419

my kids driving me crazy to get plan if something happens to me, my wife is not in bad shape with Dementia other then short term and confused otherwise you wouldn’t know. Question kids ask can you be put on waiting list when it’s really not needed ????

harshedbuzz

@charley0419

I am the kid in this scenario, and I side with yours 100%.

Unless you are some sort of immortal from the Marvel Universe, you need a Plan B. Everybody does. I have a solid Plan B for my mom's care now. Things happen. You could be hit by a bus or have a debilitating fall. You could be one of the 1/3 of all caregivers who dies before their LO. Your wife could break a hip or have a stroke that propels her into late stage 6 by the end of the week. You need a solid plan B.

You typically include this sentiment "… short term and confused otherwise you wouldn’t know" in your posts. Given that your children have a strong sense of urgency around this issue, I suspect perhaps you have very loving eyes or don't realize the amount of scaffolding you do for your wife daily. If something happens to you, you will be asking them to scramble to put care into place for their mom while dealing with their own grief or setting up care for you.

When my mom was dithering on crafting a plan, I went behind her back and created one of my own. I had a SNF that was willing to take dad on-the-fly if mom died or became incapacitated where he would stay until I was able to transfer him to one of my top 3 MCFs. When it was time to place my dad; he was agitated and expressing murder-suicide ideation. Additionally, she was neglecting her own health needs— a choice that has impacted me greatly as the neglect means she can no longer drive. I had to have a CTJ with her threatening that if she wanted a say in where dad ended up, she couldn't leave it for me.

HB

eaglemom

Your kids are showing concern, for this I'd be happy. Maybe they are seeing something in your wife that you aren't seeing? But more to the point - they don't want you to not have a plan. This is because they don't want to have to make a plan for you. You might not like / agree with the plan they come up with. Therefore it comes back to you to make Plan B.

This bring me to realize that I need to refine my Plan B for my DH and myself. Ninety percent of our Plan B is still good, but there is one area I need to address. Just because you have a plan doesn't mean it can't change in time, just have something, that's the bottom line.

eagle

jfkoc

Tell your children that there are things that can be done ahead…some that can not.

Please have your Health Directive, Durable Power of Attorney, Trusts etc all in place.

Plan B placement too but keep in mind that these facilities change quality with the wind.

Quilting brings calm

are your children local or out of state? If you have a heart attack, a gallbladder attack or get hit by a drunk driver …. How long would your wife be in a hospital waiting room unattended? Who would make sure she got fed that day?

My step-dad didn’t have a plan either and he thought mom was ok. Until she wasn’t and we had to move them home on an emergency basis and find a place for them to live.

Develop a plan.

sandwichone123

https://alzconnected.org/discussion/70651/mc-facilities-questions

For many facilities you can be put on the waiting list and stay there indefinitely, just letting them know when you want the actual room. My general philosophy is that when someone is wondering about care, it's time to start taking the tour. Find out what's out there. As QBC says health problems happen, and it's best not to add the emergency of her care to any health emergency you may have. Would she be safe home alone for a couple of weeks until you get back from the hospital? If that's not a comfortable scenario, it's a good time to find a replacement.

SDianeL

I was advised to plan and didn’t. Last December I was diagnosed with aggressive cancer and had to find a facility quickly as I could no longer care for my DH and go through treatment. He had no other family able to care for him. I wish I had planned and got on a waiting list. The facility I selected only took him for 30 day respite to evaluate him. While undergoing treatment I did get him transferred to a VA facility but it was so stressful. I say your children are right.

H1235

I agree with the above. How long are the waiting lists in your area. My mil was on one for a year before she could get in. Your kids are worried and they probably have busy lives. If something happens to you they will have a lot on their hands to deal with. Dementia is pretty ugly! You may not be able to keep her at home as long as you hoped. You might be prepared for loss of memory, helping her get dressed etc., but are you prepared for physical aggression anger and delusions? It’s just hard to know what to expect with dementia. I assume you have seen an elder law attorney to make sure one of you children can take over a DPOA if needed. Remember they just want what is best for their mom and dad because they love you.

harshedbuzz

@charley0419

The other piece to this is that if your wife truly "showtimes" to a degree that she might seem OK in a rushed or urgent setting, her need for support might go unnoticed and unmet in the moment which could be disastrous. She might also be called upon to give medical background or medical decisions on your behalf.

TL;DR This is the one about liver failure in Leesburg for the old timers.

Dementia slammed into my life one morning over Presidents Weekend in 2016. This was almost 10 months before I would officially have a diagnosis for him. Mom and dad were in Florida for the winter. The previous couple of weeks my mom hadn't been feeling well. She'd been to see her PCP a couple of times and didn't seem to be perking up initially but seemed to be doing better. I called most days to check in and chat. If she didn't answer, I'd call dad's phone and talk to him. She reported vague symptoms— no energy or appetite. He said she was doing better and didn't answer because she was napping, at the pool with friends or at Publix— these were all plausible. A couple times he told me she was getting ready to divorce him and wasn't doing anything like cooking or cleaning. TBH, this was also plausible. This went on for about 3 weeks with me getting a hold of her several times where she'd report not having a great day.

Towards the end of this period, a couple days went by without answering or calling me back. I called the local non-emergency number and asked the police to do a wellness check. Dad answered the door and told them he wasn't wearing his hearing aids and didn't hear the phone and that mom was at the pool with her friends.

The next night I got a call from the social worker at the local hospital. Mom had been admitted in acute liver failure the night before and things were touch and go. Fortunately, they sized dad up as incompetent pretty quickly and called me. A neighbor had seen my parents at Publix and being an RN immediately noticed mom's jaundice. For comparison, she was the color of a school bus and dad never noticed. They'd gotten my number from a hospitalist how recognized mom from her PCP office which tracked me down as an emergency contact. I flew down immediately and went directly to the hospital. Dad was nowhere to be found. With care, mom was improving but she'd need to be hospitalized a week and have help in the home for another 3. I arranged to stay and got my niece to cover part of it.

After conferring with her care team, I drove back to my parents' house and found dad in the living room wearing nothing but a bath towel hosting his neighborhood's happy hour. During the time I spent there with dad it was clear to me he could be left alone for more than a few hours during the day. In the space of 15 minutes, I watched him get shocked trying to jump-start a car and then put a fork in a toaster.

HB

MN Chickadee

Your kids are wise to plan ahead. Things can turn on a dime with dementia. Their condition can change suddenly (illness like covid, flu, UTI can suddenly accelerate dementia symptoms.) My father also thought mom was just pleasantly confused and nowhere near needing care, and then suddenly the incontinence phase of Alzheimers arrived and he hit a brick wall. He went from "we are years out from needing a facility" to "I can't go on, we have to move her now" and it was quite shocking. The physical demands of an incontinent adult were wearing him down fast, and I suspect we would have lost him first if he had tried to continue her care at home. Because of his resistance to planning for care and me being the sole back up if something happened to him and I had small children and a career at the time, I had done it on my own. I had toured memory care facilities and gotten her on wait lists at a few so this helped when we hit our crisis point. Yes you can get on some lists long before she is ready for care. Facilities won't bat an eye at that. They will call you when a room opens up and you just say no we aren't ready yet and they will go down their list and call you again next time. Figuring out your top choices for facilities, touring them and having that plan B that is turn-key ready is truly a good use of time, and some day you or your children will be incredibly grateful for it. It's actually a very loving thing to do for your wife and children. It's not always fun to think about worst case scenarios, but having a plan so that she will have the care she needs in an emergency is a loving thing to do for her. Even when they are early in the disease, they would still be incredibly vulnerable if suddenly their spouse/caregiver were gone and you have to consider that in the planning.

housefinch

My mom (caregiver for my stepdad with dementia) broke her hip several years ago. We only learned this 24 hours later, right before surgery. My stepdad had none of our numbers, forgot to bring my mom’s phone to the hospital, and couldn’t manage the task of handling everything while my mom was incapacitated. My mom had to hire a private nurse for herself at home for $$$$$$ to survive after she was discharged home. My stepdad’s daughters had to drop everything and fly in for 2 weeks to care for him. Planning ahead is the kind and loving thing to do.

Stan2

I agree with your kids , you need a plan. It sounds like my situation is similar to yours. My wife is in pretty good shape other than short term memory and loss of problem solving abilities. I am her caregiver. My biggest concern is her care if something happens to me.

charley0419

https://alzconnected.org/discussion/70651/mc-facilities-questions

https://alzconnected.org/discussion/comment/223009#Comment_223009

I got a plan. I went to ElderCare in NJ and plan set