What do you do if you become a respite junkie? I count the days and hours till my next "prison break"!

GardenArtist, my bad--make that $12/minute not $2. And yes--undoubtedly, will have to steel myself and call them. In the meantime, judging by what others have said here, more frequent respite of short duration might help prevent frustration building up. So I won't wait so long in between, but do it on a regular basis. I'm already looking at Dec. 27 or Jan. 3. And I'm not going to take "No" for an answer on that "no one will work 2 hours in the morning" issue, either. If someone could help me get her up and dressed and out of here on time M-F, it would go a long way to relieving my stress. Thanks again, everyone!

Bridges, $120 for an elder care attorney is a real bargain. I would expect to pay over $300 for a skilled attorney with 10 or more years experience. But I believe they're worth it. Many people think attorneys just use stock forms to draft estate plans; not so; they include the knowledge they have from keeping up to date on statutes as well as case law, something lay people really can't do.

I don't know whether case law would apply to any aspect of your situation, but an elder care attorney with a good reputation and years of experience is worth his or her "salt".

I agree with Babalou; I think assumptions are being made that may or may not be true but are foreclosing opportunities that could be available to you.

If your mother is not "with it " enough" for AL, then she is probably ready for skilled nursing/NH care. Are you using her money for her care or your own? If you are spending down her money, she may qualify for Medicaid.

Most eldercare attorneys will give you a free 1/2 hour consult. I think you are making a lot of assumptions that may or not be true.

If you go by what the "gatekeepers" tell you, of course mom is not eligible for care. If you go in with your own information , you may find there is a different story. Just a thought.

Babalou, 1. Possibly but at $2 per minute I'm disinclined to speak to the eldercare atty until we get closer to the end of the line. 2. From the definition for ALFs that I found, "Communities typically offer dining, social activities and personal care services designed to meet the individual needs of each resident." But that will not cover someone being with Mom 24x7 in case she trots off to the bathroom every 20 minutes, nor will an ALF want to clean up the mess that results when someone does NOT go with her. The ALFs that friends of mine have dealt with basically want only the most "with it" seniors and as soon as they get at all needy try to oust them, especially once they find there is no $ for their adjoining Memory Care Units.

I think you need to talk to an Elder Care attorney to figure this out. Mom can't do her ADLS without cueing? Isn't that what assisted living does?

There are 3 posters here that I know of who live in NY. I'm going to PM them and ask if they have any information. Either of us could probably do more research, but these 3 that I know of have a lot of experience in the caregiving areas.

They're Babalou, Pam Stegma and NY DIL.

GardenArtist, that's how I understood all of it, too--that it must be an independent person and not the neurologist or attending physician. But if so what happens in the case of a true emergency, like the caregiver is in an auto accident or something? Makes no sense. I will make a point of following up with her doctors to find out more. Maybe PRIs are only for patients who do not have a physician to supply clinical documentation? Very confusing.

Bridges, I read a bit about the PRI process. I had never heard of it and wasn't aware of it. If I understand correctly, someone who wants to place an elder directly into a facility must go through this, the results of which are valid for only 90 days.

I assume that this is in lieu of being recommended by a physician to go to a facility?

I can see the validity to ensure that someone goes to a facility that's appropriate for the level of care needed, as that's not always obvious to the family. However, I think the family often know better than an outsider what the individual's skills and issues are.

It also would prevent someone from putting an elder in a facility because the family can't provide the care, if I understand the situation correctly, and that I think would be a real drawback because it would create a literal "no man's land" where help couldn't be obtained in a facility if someone doesn't meet the criteria.

I'm glad I don't live in NY and have to deal with that!

I identify with the comments about returning after respite. I went away for 3 days in September. It was a hassle to get caregivers etc. to take over for me but anyway..................coming home was really weird. On the 2 hr car trip back................I felt relieved from guilt at being away. I also felt anger at having to come back. But here's the weird thing......... upon arriving home, I felt comfortable because I could settle right back into my role as "recluse." This really bothers me. I've become a recluse and never dreamed that would happen to me.

As an only child I can relate. I hear the undertones in your comments. You want to do the right thing but your losing your mind! Anyone would. I have too. I sympathize with you because caregiving is the hardest job in the world. Then there's the guilt for getting angry and resentful towards a parent. Worst part...no real answers. Everyday, I think how easy my life would be if I just placed my mother in a long term care facility but I know it would literally kill her. She's been with me 12 years. I think you should save your funds and get away for an extended period of time. Totally disconnect. That's what I do. I leave for a week (partly work related but mostly respite) and get my life back...wooooohooooo!! Joy joy joy! Then I dread dread dread coming back. For me, now approaching 60, I try to stay healthy and strong so I can reclaim my life someday and enjoy it. In the meantime, I'll continue to care for my mother but if the day comes when she has a major setback that requires hospitalization and rehab, I will reconsider whether she comes home or to a long term care facility. I think there's a limit to what any sane human being can tolerate. This forum is such a great place to connect. We're not mean witches, maniacs or bitches we're just plain tired. Get away when you can for as long as you can because no one is promised tomorrow.

OMG your story sounds like mine!

Whenever I hear someone say "thank god it's friday" I cringe!
Noooo that means it's the weekend!!
What to do with Mom all weekend..

I was so happy to see that the Day Care was open until noon on Christmas Eve and it's a full day on New Years Eve.. But that extra day home means more stress for both of us..

If only she was a kid and would play with her Christmas presents all weekend! Lol

On Saturday's I try to take her out in the morning maybe the mall.. I bought a wheel chair for her so she doesn't have to walk.. We'll go to lunch or I've been known to bring it with me and eat there.. It helps me to get out of the house so I'm not looking at what needs to get done!

Whatever you need to do to kill time...

We're luckier here, bridges. If the doctors write that a patient needs care, then it is accepted. I wondered how it would be if your mother needed assisted living/memory care. Do you think she would be willing to go if you needed her to? Talking our parents into assisted living can be quite a challenge, but sometimes it can get too much for us. Four years is a long time when the disability takes so much of our life from us. I am glad she does well in daycare. That, I know, is a major relief for you.

Sorry for the jargon, GardenArtist. PRI stands for Patient Review Instrument. No longer can you just pick out a nursing home when the time comes. The state mandates that you have to verify that the person actually needs nursing home care. It's supposed to help match up the patient with the right kind of facilty. But if you need placement quickly--for example, if you are in a bad car accident and the person you are caring for has nowhere to go--it can be a hassle. I mean, who can afford to keep having them done over and over again so that the evaluation doesn't ever expire? Maybe I'm missing something here too and just getting scared over nothing? Here is an article on it: https://www.call-jane.com/senior-medical/patient-review-instrument.php

Bridges, whatever you do, don;t feel bad about wanting as much respite as you can get! You legitimately need it!!! It would not be normal if you didn't. I hope you can try again to sell the house and use the funds to get more support for both you and her. Honestly, I would opt for both regular short breaks, and periodic real vacations. I'll bet you are pretty low on both outdoors/sunshine and any kind of physical exercise, both of which could help un-depress you. Outings with Mom are great, but I would also bet given the limited things she can do, it is probably more of a treat for her than for you.

JessieBelle, is it even possible that she doesn't need pictures of you because you are there in person, versus just being totally taken for granted?

bridges, you have my full sympathy. It's not the big things, it is the little ones. My mother has vascular dementia and is very slow and confused. She has trouble hearing and understanding what I say. Much of my day is spent waiting for her to do something and hearing "Wha?" to everything I say. I imagine even Mother Teresa would get upset with saying everything three times all day every day.

I was going to go out this afternoon, but my mother decided to put up the Nativity scene. I cancelled my plans, because I knew there was a greater chance she would fall. That was disappointing.

One thing I don't like is what I'm becoming -- an irritable old woman. I try not to be. The problem is that patience has never been a strong point with me, so moving at the pace of a snail and saying things repeatedly is very hard for me. At first it was very good at teaching me patience, but now it seems more like it's teaching me how to hold up under torture... Well, it's really not that bad, but you probably know what I mean.

I try to take some respite time every day. As time wears on, it is not so refreshing anymore. What I think would work best for me is if I weren't so alone all the time in doing this.

Funny thing is that my mother was putting away family pictures when she was putting up the Nativity scene on the bookcase shelf. There were pictures of the sons and grandkids and even the spouses of the grandkids. There was none of me. And I thought wasn't it strange that the only person not in the pictures was the only one there for her. It would be so much better if we had strong family interactions and people about. I don't think I'd even need respite if there were people to share the load and revitalize each other.

I've read your post a few times but must be missing or misunderstanding something here. I'm not at all familiar with PRIs so I Googled it; it seems to be some kind of insurance.

Are you saying that your mother's insurance restricts or controls placement?

I would think she could manage well in Assisted Living. Would the PRI's prevent that?

I know you asked not about alternative living arrangements, so I'm trying to understand how the PRIs seem to be a controlling factor that also seem to have created a situation in which the only place your mother can live is with you. Perhaps I'm missing something?

Windyridge, I appreciate the input but my question was more about what works better in terms of giving respite--frequent short breaks, say 4 hours every 2 weeks? Or save up the respite $ to get 8 hours off once a month? Or really pull out all the stops and save up for a whole weekend away but wait several months for it (delayed gratification)?

Skilled nursing is not in play here. Mom is healthy as a horse--only her mind is going. She is still highly verbal, and charms the birds out of the trees. No one would ever issue the PRI needed in NY to place her. When she was in the hospital in March with pneumonia, on discharge they wouldn't even release her to a sub-acute facility--in NY, the mantra "I can't take care of her; I can't keep her safe" no longer works like it did 4 years ago when my father was alive. Nope--that hospital dumped her right back in my lap--weak as a kitten,disoriented, and incontinent, needing weeks of physical therapy, which meant she had to be homebound to qualify for Medicare to pay for it, which meant I had to pull her out of daycare and suffer at home with her 24x7 for nearly a month while they sent in an aide 2 x a week for 2-3 hours each time. (Fortunately, my boss and my boss's boss was sympathetic and allowed me to work from home, or I would have had to give up all but 1 weeks' vacation to care for her before the FMLA kicked in.)

Mom gradually regained her health and went back to daycare, where she is thriving and is their star pupil. They just love her to pieces there, and the director says that she is the least impaired of any of the clients there and is just a joy. Truthfully, Mom is NOT a difficult patient, just a maddeningly slow one who of course because of the dementia cannot follow instructions and so always has to be cued to do stuff. Basically, it is just the unending grind of day in, day out, never able to leave her home alone because she can't find the bathroom (although she's lived with me going on 7 years) and thinks she needs to pee every 20 minutes (she doesn't; there is nothing physically wrong with her plumbing, but if she starts the flow before or after she sits down, then there is a mess; if I am there to cue her, there is no mess to clean up). The Seroquel takes care of this overnight, but during waking hours before work, after work, and all day on weekends, she drives me up the wall with the constant trips to the bathroom. (Yet she can sit through car rides or 2-3 hour movies or restaurant outings without complaint.) This is not skilled nursing territory, this is home health aide territory, and whenever I do hire someone to come sit with her for 4-6 hours, she gets to tell some new person her life history and is so busy talking about herself she forgets her other "problems" and afterward tells me how nice that lady was. So maybe the problem is more with me, that after 4 years I have become a selfish witch, but I'm here to tell you, I'm reaching the end of my rope and looking for options. It's like a bad case of cabin fever, and I don't know how to handle it any more. But I am growing more and more angry and resentful, and I know I need an escape valve. The only thing I can think is to gradually increase home health care hours--hence the reason for my question.

I suppose if it gets really bad, I would have to hire 24x7 live-in here in my house (she lives in her own apartment in the downstairs part of our split-level). I have even thought of putting a reverse mortgage on her house (she still owns it ... it is shut up and winterized now, and still insured ... the market was so bad when she and Dad came to live with me that we couldn't sell it) and installing her back there with a 24x7 aide just to get time away from her. I feel like the oxygen is being sucked out of my lungs.

As an aside: I do see why PRIs are needed to prevent unscrupulous adult children from railroading healthy seniors, but it really makes it horrible for caregivers in NY. I asked the Alzheimer's Association, "What if my company wanted to send me to Brussels for a month? You mean I would have to get 'permission' via this PRI to place her, even though it is private pay?" and they told me yes. And they only last for so many days... I think it is 90 days, can't remember. But that would mean every time I needed to place her in a facility--if that were in fact the appropriate thing to do--I would have to pay $350 to have someone certify that she needed it. Is that crazy or what? Fortunately when I did have to go away in November, I was already using an agency for hourly respite, and they worked out a deal for me for the 5 days live-in care.

This is difficult but you probably know the answer. To avoid going down with the ship she needs to be in a skilled nursing care facility. Yea I know, oh the guilt, I could never do that, she would be so hurt, but if mom was still able to reason properly she would not expect you to sacrifice your life for her care. This could go on for many years.