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

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.

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.

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?

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.

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?

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

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.

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...

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.

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.

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!

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.

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.

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?

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.

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.

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.

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.

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!

$720 an hour? Are the hallowed halls of this law firm lined with original art? Is the air rarified with distinction? You must have a real blue blood, silk stockinged attorney.

I totally agree with short respites to recharge your batteries. Even if you can find 1/2 hour a day to just sit and contemplate life or listen to music it helps.

Good luck with your respite project!

After reading all of the posts here, I can identify with all of you on many levels. Mom, 93, has been completely bedridden in my home for 18 months now. I put off the respite the hospice offers for 5 days because I fear it will be too hard to start right back in if the routine is broken. I may take that respite after the holidays at some point though. I have someone come in to bathe Mom 3x a week and a nurse a couple of times, but it is really all on me. This lingering is so hard to watch as she wants to pass on and I am depressed. I go through each day somewhat robotically, one day at a time and thought I was getting through it ok. Then as though that was not enough, I developed a retinal detachment and had eye surgery and have a long recovery,and now my husband's heart problems that we thought we had conquered, have now returned. I am depressed, angry, and very resentful .I feel very defeated. I feel even more isolated now with my eye problem. We are only in our 50s and I was hoping to someday get my life back.
The one thing I have learned is that there are phases to this caregiving....the LO has physical and mental changes, hospital and ER phases, the rehab stints 3x in a nursing home and then at home phase which was the absolute worst as she had to be taken to doctors appointments in an expensive hired wheelchair van and just didn't want to rehab anymore, then came another hospital stay, rehab attempt and finally hospice. The hospice phase has been so much better, but it is the never ending day to day suffering and her wanting to pass on that is getting to me.
Bridges, I hope that at some point a PRI will be granted for your Mom, as hospice was finally granted to my Mom. I understand these safeguards, but they often create problems for people who really need them as everyone's situation is different and it seems that today's technology and laws don't allow for the individual human situation. I hope you get your chance for respite and a sympathetic doctor to grant the PRI.

I love adult daycare! I hate that they aren't open longer or on a Saturday here and there. My mil loves it and thrives as well. I had a nurse help me for respite care so I could start attending my kids activities or just have family time. But... My mil has gotten worse and I can no longer give her a shower etc... Too hard. So, we have help come in only from 630-830...toughest time with her. It's time for me to run my kids, or even to just fold laundry. It lessons the stress! I do this about 3 nights a week. I notice a difference in me. Hope this helps. Caregiving is hard, only the ones that go through it or have gone through it understand, others think it's a piece of cake.

I did not realize the damage that could be done from caregiver burnout. I have taken care of my terminally ill mother and now my father for over 10 years. So little respite and the toll has been devastating. I have had suicidal thoughts and have withdrawn from everything. I wish I would have found this website long ago, even if just to tack about it. What does not exist are these kind of services for the caretaker. Please, no matter what, take time off. The comment about becoming a recluse for Marialake really hit home. I am only now breaking out and it is difficult. Don't become comfortable with being a recluse.

For JessieBelle and others. My husband is 75 and has vascular dementia and I think the thing I hate the most is the waiting! And my nagging for him to hurry. His brain and bladder don't talk to each other very well. He has been in diapers for 4 years, but he often says he has to go but nothing is there.
In Indiana a living will has no clout when in comes to end of life issues. You need a POST form - Physians Order something or other. I did recently find out the MD has to sign something but don't know if one has to pay or not or if there is a time limit. He has a (to me anyway) fairly large TIA last Friday morning - his legs were affected. I realized that our POST forms haven't been signed, so have to get busy on that this week. I feel so lucky our daughter lives next door and we get along great. I don't know where we would be without her. I call this our assisted living. I know we could not be in a regular ALF because he needs so much care. And I cannot fathom trying to get him down to meals because of his slowness. I would certainly go crazy.
I love this forum - I learn SO much! Everybody who posts deserves a hug!

I would reverse mortgage her home and get her a 24/7 care team. At least help to bring her to daycare, and home and tuck her in bed. Family caregiving can take it's toll on your health as well, and if you don't take care of yourself you won't be around to even oversee hers.

Do you have anyone from church that might be able to come over to be with her while you go out! Maybe the senior center in your area has volunteers that could come? Is it possible to hire a nursing student like you would a babysitter from the local community college. Would your health insurance cover the cost for hiring help as something that your dr deemed necessary for you in order to get a break?

Live-in care is your only option.Do you know how many caregivers die before or shortly after their loved ones?? Mom will not get better. The care in a small group home or in a memory care facility is sufficient. You won't stop being responsible, you will still visit, take her out for lunch maybe, but you will reclaim your life. Hers can continue for 4-6 more years!!!!

I have to pay a weekend aide to get 24-48 hours off every week so I can go home to my house and take care of my responsibilities. It's either this, or put her in the nursing home, which will undoubtedly kill her. I still feel trapped even with the weekly respite.

Reading all these posts helps so much as I am 70, have severe sciatica and caring for my 73 year old husband with advanced Parkinson's and dementia. He is on hospice but I have very little other help and don't qualify for anything because we make over $900 in social security. No one seems to understand why we can't get VA benefits or some other but unless we give up whatever little we have saved in our 401 K (which I am dipping into now just to get some help) have no life insurance etc we are just stuck I have looked into a rehab facility and skilled nursing but they are over 3K a month which is more than we make. Don't own our house. He is so much a risk because he has just enough strength to get up out of bed or his wheel chair and falls several times a day. I have to have a neighbor or the fire department come and get him back in bed. I have two sons who would be willing to help financially but I just don't know where to start. I'm wondering if a home that takes in just a few would be cheaper and how I find them and if that is a good thing to do. Hospice is no help as they won't give me the 5 day respite saying that the skilled nursig facility says we are just trying to push our problems off on them. Thank you all for sharing. You get to feeling like you are the only one going through this and I do get such good advice and suggestions from reading. I pray for all of you to be blessed for what you do. Sorry this is so disjointed but I'm sure you get the point. I'm tired, depressed and feeling very hopeless right now.

You have my compassion, bridges. Four years is so long, I really can't imagine doing that. I have been taking care of my mother who has c.o.p.d. for one year. Only one year, and I relate to how you feel. She has recently (maybe due to oxygen lack) shown some dementia or slight psychosis. This has radically changed the picture, so even though she is getting around the house okay, I am reluctant to leave the house now. She can't go to daycare, so I am at home with her everyday. It starts to feel so surreal, because we are social creatures, and being one on one with a single ailing person becomes draining and tedious, even when you love them a lot. Its hard to give up this time in my life (age 57) when I myself am feeling some slowing down and want to enjoy some things before I am old. I love that my Mom's needs are really being met, and I take satisfaction in that. It sounds like for you that other family members are not available to help, but that would be ideal. Can a family memeber can come and look after her for even two hours while you get away? Probably not, as you did not mention it. Your post touched my heart, how honest you are. Of course, you are tired of it. I'm sorry I do not have any answers. I, myself, am challenged as my mother stubbornly will not allow caregivers in the house! That will have to change soon. I wish you the best.