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Found in some posts two years ago, that for us, who did caretaking process for years, putting Mom or Dad in NH does not relieve any stress. "Still there was no peace, constantly running, checking the phone for messages and jumping out of my skin when the phone did ring. ..." How to deal with that? I think for me was much easier when mom was at home and although I realize that in her now conditions (dementia, dysphagia, feeding tube) I cant take care of her at home, my stress is even worse. Hard to see here life miserable and can't make any decision to stop it. She has DNR, but nobody is telling me she is dying, it's just hard to see her in such conditions...unable to eat, not much walking (she was very active home, but after intubation and all that medical intervention, aspiration pneumonia), she's weak and not much understanding of whats happening, although knows me and kids....Days, month, years, who knows, my heart is just breaking apart. Tell your experiences, how you deal with that?

I do feel a little anticipation when the phone rings at night. But, I have become to trust the MC where my LO is and I believe that they will provide my LO the care she needs. I don't need to be in constant worry over that. And, I know that she is getting proper care. Plus, since she is now late stage dementia and declining, she is on Hospice and they are quite helpful. They are another set of eyes on her to make sure that she has everything that she needs and is not in pain.

I do make arrangements for when I am out of town for another family member to be notified if something happens. Now that she's on Hospice, it's expected that there will no longer be ER visits, but, we could get word that the time is near or that she has passed away. We've made arrangements for when that happens too, so, I now feel more resolved about things. There is still a certain amount of stress and I'm not sure if that will ever change.
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Your deep love and care are evident! Be grateful that you do care, but trust God to do the caring now. Our loved ones feel our prayers and our love. I am reading an incredible book, Caregivers as Confessors and Healers, OCAMPR, Eighth Day Institute. May God grant you peace!
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Hey Poetry, My sister and I finally had to give up 24/7 care of our Mom, and moved her to a memory care home this month. The transition has been tough on all three of us at alternate times, but we're working through it. I had a lot of assumptions about how this would go, one of them being an increased peace of mind as while we'd still be her constant companions, she'd be with professionals who were trained to handle the medical issues that were beyond us. I was wrong! Not about the professionals, but that my peace of mind has diminished, not increased! There have been several times in this past four weeks that we've both panicked in our hearts and brains and thought "I'm taking her home right now!" Our Mom is not yet at your Mom's stage, but we've dealt with the heartache of this transition by taking deep breaths, seeing where to adjust and improve our engagement with Mom, what to push the MC people on and what to take on ourselves instead, and lots, and lots, and LOTS OF WINE! Have you tried the wine, and a good girl bitch session? It's done wonders for my sister and I to split a bottle or two and cry/laugh our way through the heartache.

I've been chronicling our memory care transition on my blog: https://www.stumpedtowndementia.com/

If you have the time or inclination to read a post or two you might recognize your own reflection in our journey. I certainly recognize mine in yours.
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Well my Mama has been in Memory care for just under a month. She just got sent to a Geriatric Psych Hospital 2 days ago. Yesterday had to go to the care meeting. Had a short visit with her. This daughter had to kiss her and walk away. Straight out to the parking lot to have a good cry! Whew! This is so cotton pickin' hard. I seem to be on the road and giving up all days off more than when I had her at home. But she was doing nighttime wandering abd lots of other stuff for the last couple off years. But that's a whole other story lol!
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Poetry21 - Thanks for raising the question. I never thought about feeding tube when she did her DNR.  It was just let her breath and heart stop, no heroics.  It's something to consider.  No, she has not been in NH, so not my experience, though I did take a 3-day retreat with friends last month, and it was wonderful.. It was in the mountains of Maine where there was no cell reception.  If hubby or doc needed me for something major, they would have had to call the state police to come find me.  My heart goes out to all of you.
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Surprise, you are right as usual. Yes, I do have kids, and yes, I did exactly the same for my daughter, when she cried first 5 minutes in day care/school, I left and cried at the parking lot. Except that the guilt was somehow not as strong as now...When my dad was dying 15 years ago he was sure I will never leave her in NH, and I am feeling that I lied to him....although those 15 years that she was living with us were very hard for the whole family, she was always pessimistic, negative, and never let us live our lives, and last two years when her dementia starts were absolute hell, especially when my health this year gave me troubles(I was on chemo and radiation half a year). But yes, your advises are all correct, i wish I can write you more often, when I am crying...where are you living by the way? I am in NJ.
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If my mother ever agreed to go to an AL facility, I'm sure I would hear constant complaints from her. I've told my brothers that if she does end up somewhere, I do NOT want to be the contact person (even though I am the only local one).

She should be getting in-home help, but she refuses. And I refuse to do the things for her that she could hire out. (Folding sheets, putting them on her bed, cooking meals for her, etc.) She did hire a cleaning service, but they've just gone to once/month (their suggestion). So now she only gets her sheets changed once per month, I guess.

So why don't I go over and help her? Because she micromanages and obsessively controls every movement I make. I can't stand it. And the more you give these elders, the more they expect. I'm already her driver, and she is not happy that I've set firm boundaries on that.

She expected me to do a lot more than I am doing. And I resent that. We don't have a good relationship, and I do as little for her and am around her as little as possible. She doesn't think my time is worth anything, so why waste any of it on her?

I've told my brothers that the future scenario for her might be fall, then hospitalization, then rehab, then a facility. I will not be involved. And I'm not doing any after-care for her. Did that once; it won't happen again (my brothers can take care of that, even though they are out of state).

Many people are horrified at my attitude. But then they didn't suffer the emotional abuse that I did from my mother while growing up.
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Poetry, I don't know if you have children, but I want you to think about a 5 year old on his first day of school. Mama has always been there for him, including him in everything even though she knows she really needs some alone time with her husband. When she takes him into the class room, she has two choices, both which break her heart. She can put him in his seat, tell him to have a great day, kiss him, turn and leave, and close the door so she can't hear or see him any more. She can trust that the teacher will take care of it. Or let's look at the second mom, who hovers and is ready to give in and rescue the boy at the first distress.

What we don't see is that the first mom is faking it; she's scared that her baby is going to fail, or get hurt, or cry, and she won't be there. But she does not let anyone see that and she sets this boundary with herself and her baby. He must go to school. If she is upset, she will pull into a parking lot and cry for a minute, but that's it. Time to suck it up buttercup, and let the boy be independent and have his own life.

Your mom's brain is broken, and she is that child. She can handle being left with caregivers 24/7. She may cry and whine and hurt herself, but with medication, she will lose her anxiety and learn to enjoy her new school. It is tough to be the mom with limits, but we are now our parents' parents, and it is our job to do what is best for them, not what they want us to do. They have taught us to respect their wishes, but when those wishes are not good for either of us, then we must be strong and keep good boundaries. There's even a book called Boundaries by Townsend and Cloud that can help you learn how to do this. It would be good for your whole family.

Be the strong mom, cry in the parking lot if you need to, but give mom what she needs, not what she wants. Visiting once a week is fine! ((Hugs))
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thank you Surprise, yes, it is almost like you said, except that with my mom unfortunately, it was always difficult, after my father death, she completely become attached to me and me, feeling her loss, allow that, it was many almost 15 years ago, when she was in good health and I should be firm that time, but I was not and I allowed her completely in a life of my family, which almost ruined my marriage (almost, because my husband still with me, but i dont think that he forgives me for what I did, we never had even vacations together without her). So now, when she will hurt herself if she ll be home alone while I am at work (even if I will have home care aid for about 6 hours, she will not listen to anybody, she will do what she wants and the same will happen again(aspiration pneumonia as she should not be eating solid food, but she doesnt believe in that and does not remember now, what happen to her two months ago). She is Ok in the facility while I am not there, we did yesterday an experiment, my daughter went without me and she was fine, but when I am coming, she is angry, asking to come with me (sometimes even not saying "home" just where I am going), so may be I should try to visit not every day, otherwise I will go crazy too.
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I usually ignore such posts but for some reason Janlins hit a nerve. So while I’m a little late to the party- I’ll assume Janlin is still here - and I’d like to ask her a question.

In her final year my mother had pretty severe dementia. Sometimes mom knew who I was but that was less and less as time progressed. Mom was also completely bowel and bladder incontinent. As well, mom was wheelchair bound, could do nothing to assist in her bathing and grooming, at times she could minimally assist with her dressing and finally her dementia was robbing her of her ability to remember how to eat.

Next -

My son “Rainman” lives at home. He was 23 years old then. Rainman has severe autism and a bit of cerebral palsy. He functions at about a two year old level - with some added complications due to the autism. Rainman is completely non-verbal, wears Depends - although if you can get him to the toilet in time he’ll use it - but only with total assist. That means undoing his pants, pulling them down, helping him to sit - then the reverse when he’s finish - after of course, you do the wiping and cleaning, plus you had to stand there the whole time to make sure he hasn’t thrown a wash cloth into the toilet - or worse - his hands. Rainman hasn’t a clue as to how to shower himself but will stand there while I scrub away. He can minimally assist with dressing - which means he’ll put his arms up for a shirt or step into pants. When it comes to eating - Rainman can use a fork - only a fork - so I have to cut all his food. Add in that Rainman “pockets” food which means if your not watching he’ll stuff as much food into his mouth as possible. I haven’t had to Heimlich him in several years but it will always be an issue. Finally there are the fun little ticks that Rainmans autism brings.

Finally - it’s just me and my hubby. I’m a “stay at home mom” to care for our son. I had to quit a job I loved several years ago as I couldn’t find an after-school setting for him. Anyhoo- hubby works long shifts. We live in a home I love - we brought it about a year before my parents started to have “age-related decline”. The house is on the small side - two bedrooms on the main floor but a “bonus” room in the basement with a small 1/2 bath.

Ive had three (failed) back surgeries and am needing a forth. Back during my mother’s final year I had to have a radical hysterectomy. I knew I needed it - had been putting it off to look after my parents, but it hit a crisis point. Btw - daddy passed three years prior to my moms last year.

Okay - so now dear Janlin, I had to place my mother in a nursing home her final year. Mom had been AL with a part-time private caregiver- as long as mom didn’t out-live her funds. But even with the added care the AL asked mom to leave saying her needs were to great. So - the NH was a newer place on the small side - privately owned and the owners had their own mother there. It was definitely on the posh side and mom had her own room with her own furniture. I visited mom twice a week.

Janlin - what should I have done?
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Oh, Poetry! That does feel like a terrible choice doesn't it? The way I look at it is that if mthr were in her right mind, she'd say, "No, don't worry about me. I'll be fine (no matter where she is). Go out and live your life and have a good time! Look after the next generation so we all have a future. I'm glad to sit back and watch the next generation take over!" That's what I'd say anyway. :)

With dementia, the brain is broken and their thoughts are not logical. A memory care will help you out in that they are well trained on how to deal with broken brains and get them to do what needs to be done. They are your eyes and ears 24/7, and they allow you to enjoy your visits with her instead of worrying constantly.

Here's how I dealt with the facility stress: We - mom, workers, me - are all part of the same community, and they are simply assisting you in caring for mom. Of course you would pay friends for their time that they spent taking care of her, and the workers are simply friends you have not made yet. It will be ok with a great attitude from you and the right meds from the doc! Having a therapist help you will be great too. Finally, the book, Being Mortal from Atul Gawande is great for all these end of life issues.
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Harpcat, no she is not in hospice, she is actually better in terms her physical abilities but the main problem is dementia decline . And this is my main problem, if I bring her home, I should quit my job and sit with her 24/7.... otherwise the situation will repeat itself in a week. She doesn't listen to any of my words....
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It seems Poetry has left the site. I hope she comes back and responds. I would still like to ask if she has checked to see if her mom qualifies for hospice.
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gati, you are letting your mom make you feel selfish. That's her emotional blackmail switch that she put into your emotional wiriing as a child. Please set boundaries and see a therapist so that you have more strength to chose how you feel regaurdless of her emotional blackmail. It sounds to me that the F.O.G. is strong with this one! Fear, Obligation, and Guilt are the primary tools of emotional blackmail which is frankly child abuse.

There is a very good book to read about this subject. Emotional Blackmail: When the People in Your Life Use Fear, Obligation, and Guilt to Manipulate You
by Susan Forward
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My mom is in AL and there is still no peace. We even have a caregiver. But if it is not me running around getting all her favorite snacks and special toothpaste or whatever, I am an awful daughter. We started to have an argument about the caregiver taking her to get her hearing aides last night and I just shut it down. I am trying to work full time and do this too. If I need help once in a while that shouldn't be an issue. And it is not like my mom does not like the caregiver, I am just selfish for having her once in a while. At least that is the way my mom makes me feel is "selfish". We are lucky to be able to afford the help.
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Janlin, my views on the subject of home versus nursing care have evolved over the course of the time I have cared for my mom - in some way, shape, form since 2006. That's 12 years. Many personal sacrifices along the way. My point is, by the time people reach this site, they are probably well into caregiving, possibly on the verge of burning out, and faced with major going-forward decisions. Of course, being at home is always preferable to being in a facility or nursing home. But, sorry, one person cannot do it along for the long haul without going over the edge. That's why my view has evolved to setting boundaries early if possible on the amount of care you can physically, emotionally, and possibly financially give to keep the loved one in a home setting. Thanks to my efforts, my care, and her finances, my mom is still at home with me and an agency providing 24-hour care. That may have to change down the road. We all care and are just trying to do our best. There is no one "right" solution. I have learned not to judge but to support.
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Poetry,

If this continues to be an issue, please see a therapist and get on some anti-anxiety meds to help calm you down while you and the therapist talk things out about what is going on the inside.
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STOP STRESSING YOURSELF - I know that is easy to say but stop second guessing yourself - what is the worst that could happen? ... YOUR FAMILY TRIES TO FIND THE RIGHT OUTFIT FOR MOM TO WEAR TO YOUR FUNERAL!!! -

There are 168 hours in a week - assuming 7 hours a night = 49 hours then there is 119 hours you are available which is over 70% of time - make a plan with the facility she is in about when to call between 11:00 pm & 7:00 am in order to cover emergencies & even have a separate ring tone for them -

Then get some well deserved rest once you have your ducks in order because when you do this then you will get some peace of mind knowing that you have done as much as humanly possible - nobody can do more & stop feeling that you should because that is counter productive & could lead your own health issues - good luck
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Janlin, one other thing .... your words that no other disease besides mental illness takes everything you have to provide care..... absolutely not true! My husband passed away from cancer, melanoma, and let me tell you, it was extremely exhausting and difficult for him, for me, for each of our three young children, and for my parents , who were like another set of parents to him, and all of his 8 brothers and sisters who lived out of state.... all of us suffered, and I am positive that there are many, many others who feel the same about taking care of their loved ones at home. Mental illness must be horrible, but that does not mean that other illnesses are any less devastating.
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poetry:
I called my mother every day (sometimes more than once a day) for 5 years.
Rounded up that was 1,900 phone calls and the phone calls were never easy because my late mother spoke over me every time.
She lived in another state.
We tried to get her a different living situation than living alone.
None of them worked.
I had to leave my state and move to her state in with her.
The end of her life when she suffered a stroke at 94 years of age.
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Sometimes nursing home care is better for the patient and maybe even yourself, but it isn't easier, just different. I was caregiver to both my mom and dad. Dad required nursing home care for 2 1/2 years while mom still lived at home. Now, that was a LOT for me to manage. Three weeks after we laid dad to rest, mom ended up in the hospital, then rehab, then nursing home. I felt totally overwhelmed by her rapid decline and wondered if she would do better at home, but that move wasn't possible. Ultimately, I was totally exhausted by the intensity of the last eight years of helping mom and dad and thankful for the team of professionals who joined me in caring for them at various stages of their decline.
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I thought it would be so much easier on my mother if Grandma was in NH instead of home, but I was terribly wrong. My mother still spent all day with her but had the added stress of being away from home. Now it’s my turn. It was very hard at first when Mom went to AL. I wondered if I had made mistake. After time, she became more settled which of course made easier for me as well. Hope that’s true for you.
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My mom's in AL and I think the level of care is right for her. Although for what we pay they could be more attentive. I work full time (no other choice) and am single, the only child and I think this is our only choice. I hope to move her to a better facility this year that is somewhat more expensive, but she has LTC insurance for the next 3 years so I am using it. Unfortunately there is a waiting list for the better place.
I still have no peace as I find myself constantly driving over there to deliver all the little things she wants, I am paying bills, faxing in bills to the insurance company, managing complicated finances that I am not used to. I never had that kind of money. I find myself waking up in the middle of the night thinking of annuities.
By the way mom was in a rehab nursing home prior to this when she was still living far away and she fell and broke her ankle. She told me they put restraints on her, but I don't know whether to believe her or not as she was quite out of it at the time from post-anethesia dementia.
I have got her in a decent place now, but there are still worries. Just because you put them in AL doesn't mean all the responsibilities are taken care of.  I also am tied to my phone in case they call.
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Janlin, Why respite? Because there comes a time, when the caregiver is so depressed and unable to care properly, he/she needs to get away ... to have some time to remember that there is life out there beyond the 24/7 caregiving experience, to refresh and renew, and then to be able to return to "giving everything they have" back into caregiving. It is NOT selfish.... and it is NOT right for someone else to judge the person who needs respite.
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Poetry, I feel for you. I also agree that it feels easier when you are in control in your own surroundings.

When my mom was in respite care for 5 days at the end of April, it was supposed to be relaxing for me (I was babysitting my 2-year-old granddaughter). It was anything but relaxing -- not because o my granddaughter, but because of  Mom. I heard things from my brothers and sister as to what was going on at the nursing home. I would call to make sure the staff were doing what the they were supposed to be doing (they weren't). On my way home on day 4, I had a meltdown. I could not stop crying. Recently, the hospice nurse suggested doing another 5-day respite to help me out. I said, No thank you.

Right now, I am sitting in Mom's room (by myself) while she sleeps in her hospital bed, thinking that the end is not too far away for us... As upset as that makes me, I have to keep telling myself that she is not the person she used to be...

Peace to you.
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For 2 years I did everything I could to keep my mom out of memory care. It was a promise I made to her to live a life without being stigmatized as a crazy person. When she was in independent living, then assisted living I worried about her constantly. I was always very anxious about her quality of care. Always anxious about her mental decline. I was always worried.
Then the day came when I knew in my heart she needed to be moved to memory care. She started showing up for dinner without her pants on and the other ladies in AL were making fun of her and bullying her like a pack of wolves.
Now that she is in a small memory care unit, has friends that better understand her and has the one-on-one care she needs my constant worry is gone.
I think the anxiety stems from not knowing if they have the care they need and if you are making the right decisions for them. You can only do the best you can and find peace in your heart.
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Poetry21, your post struck a chord with me because I had this "revelation" just this morning!

Situation: 84yo mother still lives at home, has Alz, sister and I visit her 4x a week, take her to eat/shop. She has germ phobias and dietary issues that make care by others more trouble than it's worth. A support group sister and I go to is telling us we need to get her into a place. We're wrestling with which level of care. Home aide? She won't let anyone in the house. Extremely security conscious. Memory care? How do you take a person who has lived in her house for 45 years almost as a shut-in except for an enabling sister who did EVERYTHING for Mom (another issue...) to a place where she knows no one and no thing? I woke up realizing if we placed her somewhere, we would be trading one set of problems for another - and paying dearly for it from her estate. It's her money - not ours and we are well aware of that - but what's left of her happiness would NOT improve by being elsewhere. We are convinced she would die of depression within a few months.

We'll still have bills to pay, visits to do, excursions to take, laundry to do, greeting cards to buy (guess my mother is not the only one with a "thing" for birthday cards!), phones that ring.

Without writing a book here, Mom is better where she is until the disease progresses to a point she is no longer aware of who we are. Safer, happier (though still miserable). Sister and I will have no peace until she is gone, unless and until we resign ourselves to this. I just emailed sister this morning that our best hope is for mom to succumb to something quick - heart attack or stroke. Do I feel like a dirtbag for thinking that? Yes, but it's the truth. Part of peace is accepting uncomfortable truths.

So I think for now sister and I have no choice but to take no action, and that is a conscious choice. Leave mom where she is until the next phase of this disease.

I wish us both moments of peace. We will not have continued peace until she is at rest. Until then, we just have to live with this horrid reality because running away isn't a good option. If it were, I'd be in Switzerland by now.

Good luck to you. To all of us.
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Since pallative care is fairly new i havent had any experience but do you have any locally you can check into. It is not hospice. I think care is a level before hospice...but doesnt include rehab.
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Ive never heard of a hospital caring for Alzheimer patients...perhaps you meant nursing homes Janlin? Sorry you lost your mom and was someone who proudly cared for her in your own home.  Adult children place their loved ones in a care facility for a variety of reasons and none of those should be questioned by any of us here. My father is in a good LTC facility and is getting the care he needs by nurses and aides so I can be his daughter and overlook that care as well as all the other things I do for him that wally003 outlines in his response above. When the time comes I’ll involve hospice. And that is what I want to ask poetry21....do you have hospice for your mom? I agree that some lack of peace is due to our caring and our controlling natures. I think that is normal. Also for me, having been in the healthcare field for over 40 years, I probably have high expectations. You do have to decide what is worth worrying over and what is not. Anyone can "whine" here all they want, in my opinion.
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