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

Most difficult job I've ever had as well. You're right capearago, no getaway is ever long enough. Glad I didn't know what I was getting into when it started. I would have ran away forever.

It seems there comes a point where no getaway is long enough...This is the most draining job I've ever had. I am blessed to get 4 hours off every Saturday.

Additional info on PACE:

"Program of All-Inclusive Care for the Elderly (PACE) The Programs of All-Inclusive Care for the Elderly (PACE) provides comprehensive medical and social services to certain frail, community-dwelling elderly individuals, most of whom are dually eligible for Medicare and Medicaid benefits ."

(the URL for the medicare site is about two pages long, lol, so I'll just suggest a Google search for "medicare PACE" .. look for the Medicare.gov listing)

LC

Bridges .. the care provided by the Long Term Care is provided for under the auspices of Medicare's P.A.C.E. which provides **in home** care for those who want to remain at home, but need more care - similar to services provided by a facility. The actual level of care would be based on what type of facility she'd qualify for under your PRI program, except that the care is provided in the home. Hope that helps.

LadeeC

It seems to be the sad state of affairs that it's usually one person that gets the dirty work of caregiving. Sure, there can be some fun times when the patient is lucid.

I don't get a break, My sisters wont help, so its me every other day. Dad has Alzheimers stage 6m and my mom, well she is 80 and a little crazy, always in the way of everything I do. Always under my feet, but she means well. She talks excessive to my dad, repeating every command over and over confusing him more every day. Its heartbreaking to be around and see my sisters breaking their hearts by not wanting to help. I love my parents, but a day that I don't have to go down is a breather, but I find myself thinking about them and worrying about them, feeling guilty im not there. I call them everyday when i get home and when im not there. Just wish my sisters would see our father needs them, but that wish passed long ago.

All: I do pay for her care out of her money. Right now I'm using her Social Security and the small pension Dad left her. The daycare and extended hours at the daycare center (a really sweet aide stays an extra 2 hrs 3x a week) costs $348 a week. So after doctors and medicine and other things, there's not much money left for respite. That's why I say Assisted Living is not an option, and why I'm trying to patch together a combination of daycare and respite care until I can get her spent down. The advice on the part of several to take shorter, more frequent breaks makes a great deal of sense to me, and I am going to try it.

islanders5, do you mean 6:30-8:30 in the morning or at night? Do you have an agency send someone? They'll do it for fewer than 4 hours a day? That is exactly the sort of arrangement I would love--an hour or two in the morning before work--but everyone keeps saying "Impossible! Impossible!"

bls090, the congregation is small, and there are 2 other ladies who have dementia like my mother. It's really frightening how common it is. I read somewhere that by 2020, 1 in 4 people will have it. It's a real problem. I contacted the local college, which has a nursing program, thinking maybe someone interested in geriatric nursing might want some paid experience. But they referred me to the Financial Aid office, which basically said put an ad i the student newspaper. This would mean someone untested, untried, no clue if they do drugs or steal. I was unwilling to risk it, even if it means paying more. Insurance won't pay for it, not for her and not for me.

mscoulter, I can sympathize. I feel like if I put mine in a NH, she would go downhill quickly too. Which I guess goes to prove that I really must have her best interests at heart or I would just stick her in there and be free in short order. (Like you, I just can't have that on my conscience, as tempting as some days it might seem.)

niyah321oki, I am an only child and all of my cousins have already been through the mill with their own elderly parents' illnesses and deaths. They are unwilling to help. At first I was hurt but then I realized they are in survival mode and afraid of being sucked in again--compassion fatigue. We share that trapped feeling. I married for the first time in my late 40s and had lived with my folks up until my marriage. We all got along very well, and I was homesick when I moved away, but it passed, and gradually I got to relish my independence. It lasted only 6 1/2 years before my father got worse and my kind husband suggested moving back to my home town to help out the old folks. We both did this out of the best intentions and now here we are in our 60s and wanting to retire and really can't, we are working and really can't enjoy our money, we are on this care treadmill. I hope your mother will at some point accept a caregiver--it takes time to overcome our parents' objections. Sometimes it takes a doctor explaining that their adult daughter can get very sick unless she gets someone trained in caregiving to come in to help her from time to time, that she needs the break. Try it and see if it helps.

Salisbury (and whoever else mentioned the slowness)--yes! what is it! Why can they move so normally some times and at others it is like they are in ultra slow motion? I remember the old Tim Conway skits where he played the maddeningly slow old man, and nowadays I don't find those skits very funny.

ThereIsNoTry, I hear you. She wears Depends overnight as a precaution but 99% of the time is dry as a bone. The only times she's not is if I delay in getting there and she can't find her way to the bathroom alone. Hence, we have rigged up a motion detector alarm (kind of like a bed alarm in the hospital, but this one trips as soon as she sits up and swings her legs out of bed). The starting and stopping flow is new since Nov. 2014, and the doctors have looked into it, but can't find anything wrong. We think it's OCD type behavior, like skin picking or repetitive questions or perseveration. As long as someone is standing there, there are no accidents. She sometimes resents my being there, but usually tolerates it, though it's a point of friction between us.

Llamalover47, I have screamed too--more of a roar or a bellow perhaps than a scream--sometimes in the middle of the night, at the top of my lungs. It's a wonder the neighbors didn't call the police thinking there was a domestic dispute. Oddly enough, it hurt my throat but it felt better to get all that out. Honestly, sometimes I wonder if the men in the white coats won't take me out of here someday babbling incoherently. Others, I think that's ridiculous, that I can do this, just stay calm. The truth is probably somewhere in between LOL

LadydeeC and Jennifer2, is what you two are talking about the same thing? Managed Long Term Care and Medicaid Community Care? Or is one the first phase and the Medicaid the second? In any event, it's something along those lines that I see meeting her needs best once she gets spent down. I have tried to be thrifty with her money but I really didn't think she'd live this long, as she was very sick and burnt out from caring for my Dad for so many years.

hawaiihelp, I don't know if your arrangement is common in NY or not. But it's a fresh idea. I'll have to look into it! Thanks!

Everyone, whether I answered you personally by name or not, please know how much it means to me that you heard my cry for help. I don't feel so alone anymore! Thank you!!

I can really sympathize with everyone commenting. My mother was living with me for 3 years because she was not longer able to live on her own. Shortly after moving in with me she was no longer able to drive and she was diagnosed with Parkinson's. For over 2 years it was one doctor's appointment after another and constantly shopping for her and still she was never satisfied. She could not afford assisted living. I tried to get her to use the money she did have to relieve me and hire someone to take her out a few days a week and walk with her. Unfortunately she did not get along with anyone and always wanted me to do everything. Finally, I went with her to an eldercare attorney and they told us she could qualify for Medicaid "community care" (which is home care or assisted living) even though her income was a little too high. In NY state you can send your excess income to a "pooled trust" and they can pay bills on your behalf with that money. By doing this you can qualify for Medicaid. The next step was to find a place, this was a difficult step since they were all depressing. We finally found a place that was acceptable to her. She did not want to go, but I explained to her repeatedly that I would not be able to care for her when her condition worsened. My house was not even set up with a bedroom and full bath on the lower level where she would not have to go up and down stairs. This facility has many levels of care so as her condition worsens she can get the care she needs there without moving again. Yes, was very difficult and still is. She has had 2 hospital stays and is now in their rehab unit. However, I know there is no way I would be able to take care of her at my house with her current condition. The place is not perfect and I continue with my caregiving visiting her frequently which is even taking more of my time. I try to build a friendly relationship with her nurses since she is tough to deal with. Finally, by doing this I saved my own sanity, because even though I am still very much involved I can go home at night and know she is taken care of and I get a break.

I love your comment on the prison break! My cousin gave me an idea when I needed respite and that was to go out to my car and scream!

Aloha from Hawaii, Bridges. I am a live in caregiver. Here in the islands experienced caregivers live in for room and board. I am caring for a 90 year old dementia patient whose daughter is a working flight attendant. We work together to care for her mom, that way neither one of us becomes too stress out. My salary is my room and food. I have other outside income. Perhaps this type of arrangement might be of help to you.

Hello everyone!
I haven´t become a recluse yet, but my mom´s total manipulation & control (for over 30 yeARS) really angers me. My sisterM was almost a fulltime recluse for 8 months & she handled it with lots of compassion because my 80 year old parents lost their youngest (47yo) daughter 9 months ago & it has taken a TOLL on all of us!
Now that my sister M has been on her own for 3 weeks she has rediscovered PARADISE (my mom & dad are with my brother & I), but we will all return to my sisterM´s in 3 weeks & ALL HELL might break loose!
I also feel angry & frustrated (my parents have always been very difficult people & never got along - my father is quite demented now), but now they are also dependant on us AND want everything their way!
I truly understand & feel the guilt, but the reality is that many of these elders are living well into their ninetees, and by that time, we, the middle aged caretakers, will be done (if we live that long) & in need of care...that SUCKS!
So, I think we have to flush our guilt down the toilet & try to live what we have left; in my experience men have it much easier than women do, they don´t tend to be overburdenned by guilt & just seek outside care for their elders, or let the daughters handle it...I did say "in my experience", so please do not be offended if you are a man reading this.
Hugs to all & all the best,
Hope

to Jetcitygirl: the only way they can come after you (I think) is IF your name is on everything that your mother owns. they cannot collect money from you to pay for your mothers bills. they are her bills, not yours. Yes caregiving is a tiresome job, it plays on your health, your nerves, etc. my mother knows, but when the time came when she had enough, we had to put my father in a NH. (of course he fallen 2 times within 2 days and he no longer could be home). It sounds like you need some respite care. good luck

Ya I'm an only child too stuck caring for my mother. Only way out is death. Hers or mine. I'm fine with either . This careging crap is just that crap. Just because they give birth your forced to deal with all that goes along w it. You can't walk away I tried. The state still wants your contact so they can come after you when she dies. I think it would be funny if I went first. Stick it back to her. Lol

You might take a look at the Long Term Managed Care provided by NY State (funded by the federal PACE program). You'll probably have to jump through the PRI hoops (hopefully, with the support of the neurologist, etc) that determines that your mom's condition is right for the **right** long term care facility, and then do the spend down to be eligible for Medicaid services. Time to start the process is NOW. Please don't wait until you brain can barely function under the disfunctional situation of caring long term for your mom. It's brutal. ((hopefully, this stays: http://www.health.ny.gov/health_care/managed_care/mltc/index.htm))

Bridges, haven't read all the replies, but I suspect many are overlooking the obvious-to-me, the saying when to stop and start "the flow" DEMANDS full time care, I don't care if it's skilled nursing or just babysitting. This IS a health issue, doesn't take much science to perform, but without it, it becomes a health and safety issue (pee in inappropriate areas is dangerous). The issue is easily joked or made little but if explained appropriately should be a permanent part of her medical history, and not re-explained every time you need a PRI? That is a deal breaker, or uhoh, wait, they could recommend incontinence clothing, but even then, it has to come off or on at the right time!!!!! I will read the rest, be well.

why are you paying for the respite care, it should come from your mothers money, she is the one requiring care. And don't feel guilty. at least you are acknowledging that you just can't go on or you are being resentful. now is the time to check into a place that can take her, give her the care she needs, and this way you can visit when you can. not everyone is meant to be a caregiver for the long haul, some only part of the way. I wish you luck and hope you can find something that works out for both you and her.

My mom declined last year. SHe was hospitalized 3 times in 6 weeks. The last time she went to subacute rehab and we realized -after three months of taking care of her 24/7 that my siblings and I could not do it. She stayed at the facility where she went to subacute. She was not happy but fortunately my brothers and I were on the same page about her care. My only sister was not and is still resentful that we would not let her take mom to her house and hire aides. Mom's doctor felt she needed more care than that would provide. THe facility were she is treats her like a princess. Last month we thought she might have pneumonia. Within 4 hours they had a chest xray done (at the facility) gave her antibiotics and breathing treatments. fortunately she did not have pneumonia. They have found so many little things that they corrected with her meds, her diet, her activity level, etc.
We never could have kept up with all that if she were at home. I do know the guilt that you feel when you are involved in a decision like this. But in our case, it turned out to be the best decision. (Not that I don't feel guilty at times) I truly believe that if mom were not at this facility she would no longer be with us. Having the nursing care and ancillary care that she is receiving 24/7 has made a difference. She is safe and well taken care of.

Oh, my, yes it is all the little things that add up over time. I am an only child, too, and moved my mother in with me 2-1/2 years ago in order to stop the frequent trips to her house on a daily basis: insulin injection at night was a must, but lost cordelss phone or billfold, TV remote not working, medicine mix-ups along with a kitchen breaker that seemed to pop every other day, bills to supervise being paid so checks didn't bounce... How foolish I was in thinking having her in my house would be easier. It is and it isn't. We were closer in our relationship then than now, and the guilt that brings can be awful. So many layers of resentment, guilt, exhaustion. I was diagnosed with Rheumatoid Arthritis 25 years ago, was able to raise my kids, work as a Realtor and kept the disease at bay. In the two years my mother was here I fell apart. My only real respite has been a knee replacement (3 nights in the hospital & 5 in a rehab facility) followed by a hip replacement (2 nights away). Looking forward to next year and another knee replacement. Lol! Otherwise I reside in the living room, she watches TV in the family room and we interact at meals. I have researched adult day care in our area, and they are not close or hours don't work or too costly - and she won't go. I've asked if she would like a friend or companion to take her out, as it has been too hard for me to manage two walkers ( into the car, put one back in, park, get out, reverse proceedure) on outings these past 6 months - except for doctor visits! - and she absolutely refused. After all the surgeries I will be mobile and will be able to go places with her, so there is light at the end of that tunnel. But then my 'vacations' are over! I, too, have become reclusive, but I think it is because of my health issues as much as the caregiving, as Mother is fairly well able to function without much supervision yet. I plan on going back to volunteering again, which got me out for a few hours a week on my own before my health failed. But then I feel guilty about needing to escape and angry that I have to leave my house to have 'me time'. It is very difficult and I give all of you who have been doing this longer and dealing with tougher issues so much respect. In answer to the question: better to have one long or many shorter respite perods - I think it would be harder to even think about going back to the situation after being gone a long time. More and short would be my choice.

I identify with all of the above. My husband now moves so slowly sometimes that I wonder if he is having a stroke right in front of me. And my mother...ah, well, at 90, and she is in Assisted Livingand very happy. In fact, she doesn't really want to leave the building.

Put your mom into assisted living. This is not a static situation. It is getting worse, ergo your frustration, and it will continue to get worse. So, your feelings are sending you an important message. Move on with things. Just do it!!!!!!!!!!!!!

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.

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.

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.

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!!!!

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?

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.

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 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.

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.

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.

$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!